Lisa Marie McMaster

sigh...

2012-01-31T11:24:00.000-05:00

Lisa is doing very well and feeling pretty great. She is having some hearing loss that we need to get checked out and is on my never ending list of things to get done. She is scheduled today for appts and tomorrow for scans. She is happy, energetic and loving life.

I, on the other hand, am feeling frustrated and catch myself sighing a lot lately. I can't seem to get anything done. Today would be the perfect example. We knew Lisa was scheduled for scans this week. We did not know until last night when we got a call from anesthesia that she was scheduled for a bone marrow biopsy today. I called last night trying to get details only to be told she was on the schedule. I was a bit frustrated because that tacks on another 3 hrs to the schedule today and means Lisa has to be put under for a 10 min procedure today and then tomorrow will be expected to lay still for a 2.5+ hr procedure.

Frustrated, I was sending emails and making calls like crazy this morning to get it all re-arranged. Thankfully, I have the number straight to the head nuclear med tech. She was able to get the biopsy moved to tomorrow so they can sedate Lisa and have all the procedures done at one time making today a short day and tomorrow a long day (still better than two long days:)

You would think I would be thankful that I gained 3 hours of my day back, but instead I find myself sighing because things went from rushing to getting ready for the hospital to having a 7 year old standing there saying she's not going to school because she's ready for the hospital and wants to stay in her pajamas. Fine. But as I try and get my work done, this same 7 year old asked for (and got) a trip to Dunkin Donuts for a donut that she was supposed to eat quietly while I worked. The donut is still sitting right next to me as I sigh and salivate and the 7 year old is running around the house not interested in the donut anymore. We now have 45 minutes left until we go and the 7 year old has just bribed me out of a whole 10 cents if she gets her clothes and takes a shower. She is now crawling on the floor looking for her dropped money.

Donut not eaten, shower not done, minimal work accomplished. I'm trying really hard to get things done...but, sigh...it's just not happening today:)

Thank goodness the sun is shining and its a warm 49 degrees here in Michigan...I think maybe I've got spring fever:)

A hello from Lisa

2012-01-23T22:55:00.002-05:00

It's been a while since we've had any video of Lisa. She kept bugging me tonight while I was working on my computer so we decided to make a video.

We will be doing scans next week and if things are stable since 2 weeks ago, Lisa will be put on the new study. Because the study involves being injected with a virus, Lisa will not be able to go to school for 4 - 6 weeks. Lisa has been hanging out with "Momma Monkey" lately and prepping Momma Monkey to once again take her place in school. Momma Monkey is from the "There's a Monkey in my Chair program"" and provides Lisa and her classmates a way to stay connected.

Still keeping my fingers and toes crossed and hoping God grants us a miracle of a cure. I cannot imagine life without Lisa.

Miracle, one little bit at a time

2012-01-15T21:23:00.000-05:00

Last week went very well. The doctors said that scans showed the disease was less active in some areas!! This is great news considering all we have been conditioned to hope for is that the disease does not progress. Wonderful! Thank you God! We will take our miracle one little bit at a time.

There is a study opening up that doctors are hopeful will be beneficial to Lisa. It is the study that we talked about doing a year ago, but Lisa was still wearing a pull up at night. The study is currently being revised to add a chemo agent to it. The hope is that a spot will open this week and Lisa can be enrolled into the study. Of course, it comes down to timing. We need her to have disease, but not too much or too little. Her counts have to be in good shape along with general health, etc. She also needs to have scans that have been completed 2 weeks prior to her starting .

Based on all the timing issues of the study, the docs decided that two days of chemo would be all Lisa would get this last week. The hope is that this would be enough chemo to keep her disease from increasing, but not enough to knock her counts down too low. So far, so good. She's been happy and playful all week and weekend. If she gets on study, she'll have to repeat the scans she just did to be within the two week time frame and then will start on the study the first week of February.

We will know about study spot by end of this week....fingers crossed....God has already shown his power by showing improvement on the scans...hoping he chooses to bless us with THE miracle and removes all the cancer from her body this year:)

Scans look better

2012-01-08T23:11:00.002-05:00

That is the message we got from Lisa's nurse last week. We will find out what exactly "better" means at Lisa's appointment on Tuesday. To hear those words definitely buoys our spirits and makes me give thanks to God for listening to my prayers. Since the 1st of the year, my prayers have been quite repetitive and went something like this.."I just want the miracle, I just want Lisa's cancer to go away...no explanations, no reasons necessary....just that it is gone from her body...and we can put these past three years behind us"

When I think about the close call Lisa had in October and hear about other cancer patients who have lost the fight, I know we are truly blessed and that God has been watching over Lisa. She is such a wonderful child, I just wish she did not have such a huge cross to carry. I cannot imagine life without her, so I will continue my mantra and prayers to God and ask for the miracle of a cure.

Please continue to pray for Lisa as we find out what treatment options are available to her and that which ever treatment we choose is not too harsh on her body.

Hope everyone has a great week as we settle back into our post-holiday routines!

The Year In The Review

2012-01-01T11:41:00.003-05:00

In January Lisa began the year on a sour note with scans showing the disease had spread and chemo needed to begin right away. She ended the month dancing to a different tune in her first ballet class and a trip to Muskegon with her sibs for a weekend winter camp.

February began with more chemo and getting admitted to MOTT a couple times due to flu and dehydration. She had a rough week or two but scans later in the month indicated a slight decrease of the disease. She also began loosing her hair again.

March came and went quickly with a couple rounds of chemo that Lisa sailed right through with little side effects.

April scans brought good news that that the chemo was still working and we celebrated the news with a trip to Frankenmuth, where the seed of the second BLAST fundraiser germinated.

It was May and we were off to chemo again. Lisa endured another hair cut and became a star at a fashion show.

June began with with one BLAST and ended with a slew of other blasts.

July was quiet but Lisa did start a new chemo regimen.

In August Lisa was able to begin participating in a new study but by mid-month we received news that the disease was again progressing. We did manage to make it to N.C. for our vacation though. On the 31st we celebrated Lisa's 7th birthday.

September came and went with little news but by the end of the month we were holding our breadth for the next round of scan results.

In October Linda reentered the workforce, but Lisa's scans show the cancer was nearly out of control. After a miserable couple weeks we discovered Lisa had a medium sized tumor in brain that needed to be addressed immediately. Another hair cut, another operation, and another recovery. What a warrior!

November came and went with 12 sessions of radiation.

December found us drained but we rallied and had a great month filled with family and friends and holiday parties and a couple trips to the new MOTT. We're thankful to so many that have helped us through the year.

2012 begins with a week off for the kids and I (Mike). I'm not sure yet what we're doing this week but I'm not sitting around the house for the next nine days. I'll probably load the car with a few of the kids and head north. The second week of January is a scan week for Lisa who as I'm typing this is hopping around the family room looking and feeling "awesome". Let's pray and hope and make 2012 a great year.

Thank you so much everyone.

Lisa's Home

2011-12-16T10:27:00.001-05:00

Lisa's home...yay!!! And she received a message from santa...here's the link:

Santa is watching

The Hospital Is New, But The Routine Is Familiar

2011-12-13T21:55:00.003-05:00

I woke at 6:00AM and heard Maranda downstairs getting ready for school. She's always the last kid to bed but the first to get up at 5:30AM. She's a great, they all are. Each in their own way of course. Today I'm on schedule. I get myself ready and then wake Tom on my way downstairs while Chrissy is already moving. She's learned to get herself up and ready on her own this year. I grab some coffee and my things and I'm out the door by 7:45.

I enjoy getting to work when it's still quiet. There are few of us that actually know where the light switches are and which ones turn on what. Arriving early also gives me a chance to check on things and get my day planned. Today however is one of those days that just isn't going to go as planned.

You recall that Lisa had chemo last week? Well, we're in that five to ten days out when the kids really begin to feel the effects. Low blood platelets, low white blood cells and low ANC are threats as are virus and infections. One sure sign of trouble is fever. Any fever over 100.5 is a concern and protocol dictates the routine going forward once you hit that number. Aside from being more sleepy than usual, Lisa's been well until Monday night when she mentioned a little sore throat. This morning it was still there so Linda elected to keep her home. By 10:30 she had a fever of 101.

Don't think about the drive out to Ann Arbor, the car knows the way better than we do. Don't think about the next few days of being cooped up in a hospital room with pumps and monitors beeping regularly Lisa actually likes it there. Don't think about Maranda's bowling meet you're going to miss, or Tom and Chrissy's appointment missed. Just call the alternate to pickup and drop off Maranda, cancel Tom and Chrissy's appointment, and oh yeah get home because Linda left the electrician home alone working on a laundry list of fixes.

I arrived home about 3:30. Tom and Chrissy were already working on their afternoon snack. Today the snack is a fruit smoothly. Sounds great. Sounds healthy but what these kids could use is a cheeseburger and a malt or something that will put a couple pounds on them. Both of then need to jump around in the shower just to get wet they're so skinny, anyway I'm digressing again. The electrician is still at the house too. He started at 9:30 AM and he won't finish until 6:30. oy

Tonight I'm going to relieve Linda at the hospital. She's still getting settled in her new job and I have the time available so I'll take the time off. This trip to Mott is probably going to use a couple days worth of PTO. Before I leave for the hospital I'm able to throw together an awesome spaghetti dinner. Pasta is always a crowd-pleaser with my kids. Add a roll or garlic bread and I'm a hero chef. At 7:30 I exit the house with an overnight bag (2 nights worth) and two bags for Lisa filled with extra clothes, toys, snacks, and her mobile IV pump.

I arrive at Mott about 8:15 and make my way up to the room. The new Mott. Nice size rooms with private bathroom, large tv, and a chair/futon that actually unfolds into a flat bed... for me! I've spent months at the old Mott and longed for something like this. We always brought a portable cot with an air mattress but lugging it around was a pain and any movement on it when sleeping brought out a noise that could wake the people in the next room. (The sedated patient in the next room.)

Well, Lisa's sleeping now and she never did register a temperature once she and Linda arrived in the ER or in the room but protocol dictates the routine, so here we are for the next 48 hours. My battery is registering 17 minutes left so I need to conclude this post. As I stated, the hospital may be new, but the routine is familiar. While the circumstances for our being here are less than ideal, the facilities are state of the art and the Mott staff are the best I could possibly imagine.

Thanks again for tuning in.
Mike

A Day Like Any Other

2011-12-09T10:43:00.006-05:00

Lisa finished up the last of her chemo for the year yesterday. As you can see in the photo she makes good use of her infusion time. The new Mott is nice. We're still working out the kinks, it's only been open for a week so far, and finding our way around but I enjoy being able to look out the window during Lisa's treatments.

Yesterday as I looked out at the people and traffic I pondered what the other kids at her school are doing about that time of day [3:15 PM]. They're probably arriving home or getting off the bus about then and having a snack or playing. I remember those days with each of the older kids. The "normal" grind of the day was so much different then.

Yesterday Lisa woke up with the other kids. She got ready for school, minus the lunch, ate breakfast and went off to the bus with mom. As lunch time came around I stopped in and picked her up for her afternoon appointments. The chicken selects and fries from McDonald's, her current favorite, are already in the car when she gets there. The smell of them is intoxicating. We hook her up to her IV pump in the car to get a head start on the infusion and she digs into the meal. Half way to UofM she's full and hands the bag to me to cleanup the crumbs as she dozes off.

We arrive at the hospital, wiggle through the parking structure, park and walk across to the new Mott. We grab a wheelchair and pile on the IV pump(s), the laptop, the Mott bag with extra clothes and a toy or two, and head for the elevators. We exit the 7th floor and make our way to the pediatric infusion area. After the blood pressure and temperature check we get seated in our chair. We're still learning the new TV and game features but Lisa's tired so she turns on something as mind-numbing as Phineas and Ferb and is lulled into sleep.

After I pry myself away from the TV I fire up the computer check email and try to get some work done. I can hear some of the other kids in the area. Today one of the little patients is struggling through a coughing fit and so Respiratory Therapy is called up to assist. He's quieted and made comfortable with the help of Albuterol. A little ways away I hear a baby making "lal lal lal" sounds as he discovers he can make new sounds by moving his tongue around. A delightful sound that makes everyone including myself smile and laugh.

Where am I going with this dialogue? No place in particular I was merely struck by how different individual routines are based on circumstances. It was a good day. Lisa was comfortable, the view was decent, and we're not scheduled back at Mott until January.

What can I do to make the most of this Christmas, I wonder. I don't have any grand plans this year so it'll have to be something spontaneous. I can't wait to see what it is.
Cheers all. Thanks for tuning in.
Mike

2011-12-05T07:21:00.001-05:00

Once again, sorry for so few posts. I wish I could say it's because "no news is good news" but it's really more like "what the heck can I say".

Oct gave us a scare,  Lisa rallied and given the situation is doing remarkbly well. She has been complaining about headaches more and more which is a big concern. People who have seen her have remarked how different she looks. She is still quite "bloated" looking from the steroids. She is scheduled this week for an MRI of the spine because that is where they think the neuroblastoma cells will show up next. I've asked that they include her brain in the scan because of the headaches she has been having. There is really no next step out there for her. If the MRI shows activitiy in her spine we will have to give her more radiation. If MRI shows activity in the brain, this could be problematic. My understanding is they can only radiate an area of the body once, so if the activity in the brain is the same spot as last time then radiation will not be an option. As for the cancer in the rest of her body, the only thing we can do right now is more chemo which she starts Tuesday.

I don't know if it's the time of year or having a new job or having 3 other kids but I'm finding myself very worn out. Being a control freak, I just want a plan. I want someone to tell me do a,b,c and that will make life "normal". I know, it doesn't work that way.  So, hence the quiet blog...I prefer to put my head in the sand and just push forward.

On a positive note, we have been keeping busy and able to go to a Christmas Tree Walk and Henry Ford Museum compliments of a new organization called Courageous Kids. If you are looking for a good cause to donate to this Christmas, you should check them out at Courageous Kids.   Any money you donated will be matched by David A. Brandon Foundation as referenced below.

This fall, Courageous Kids was presented with a generous
match grant offer from the David A. Brandon Foundation. The Brandon Foundation
will match dollar for dollar all monies donated until December 31, 2011.(David
Brandon is the athletic director of the University of Michigan and a generous
financial supporter of the University of Michigan Health Care System)

We are NOT ASKING our Courageous Kids families for
donations. We are very dedicated to the concept of presenting free events and activities
to our Courageous Kids and their families. The sacrifices that all of you are
making, and the challenges you face daily, is why this organization exists.

If, however, you may be lucky enough to have contacts in the
community, friends or extended family in the community who you think might be
interested in making a fully tax deductible donation to Courageous Kids, before
the end of the year...that gift would be greatly appreciated. We would like to
take full opportunity of this generous match grant offer from the Brandon’s and
thought our families might be willing to spread the word.

Blessings!

Have a wonderful day!

HAPPY THANKSGIVING

2011-11-24T12:42:00.001-05:00

Sorry for so few posts lately. I find it difficult to blog because trying to stay in the moment uses all my energy and when I blog I find myself whirling with "what-ifs". While Lisa looks great and is doing remarkably well given our scare a few weeks ago, I feel like I'm holding my breath and am just waiting for the other shoe to drop. Docs were able to determine that the radiation seems to have shrunk the tumor in her brain but they would like to see an MRI of her spine in 2 weeks when she does all of her other scans. Sooooo....it's not so much what the docs have said that makes me uneasy, it's what's not being said and the "looking" and "waiting".

How dreary of a post....this is why I haven't blogged lately! Switching modes....HAPPY THANKSGIVING!!

When I woke this morning I started thinking about what I'm thankful for:

a wonderful husband,
4 kids who today are all happy, laughing and not in the hospital,
great family and friends
food, clothes and a more then 1 roof for over our heads

Today is a day of thanks and no plans. We are spending it at the lakehouse watching football, eating lots of food, and enjoying our family.

Hope you all have a wonderful turkey day as you count your blessings.

Gobble! Gobble!

Radiation is complete!

2011-11-05T09:41:00.010-04:00

After a relatively quick 12 radiation sessions Lisa is home and enjoying the fall weekend without looming treatments next week. The only appointment she has next week is a checkup on Tuesday. She seems to be feeling "fine" and eating plenty. I even suspect a little growth spurt as a few articles of clothing seem to be getting smaller. That could be a result of dads great cooking too. He is the "best cook in the whole wide world" as Lisa so often tells him. (Hey, it's her little world so let's just go with it.)

The folks at the Radiation Oncology department and the Child Life Specialist at UofM are awesome. Lisa left after her last treatment with balloons, a big unicorn pillow pet, shirt, blanket, and more and she was very happy about that. Thank you! She said she wants to go back on Saturday and give them a thank you card for being so nice, but we'll probably just wait until Tuesday to drop that off.

Another shout out to the Klenczar family that passed on a little singing duck to Lisa that they thought she would like. She did love it and very much! I should let you know that that little ducky has been singing and flapping it's wings since it came to stay with us. Thank you! So many wonderful "perfect strangers" make this whole ordeal just a little more bearable.

This weekend marks the open house of the Mott Children's Hospital in Ann Arbor. It's a beautiful new building with all kinds of fancy schmancy cutting edge technology but as always it's the people that seem to make it shine. In my opinion, anyone that works at a children's hospital are truly cut from precious cloth. Thank you for what you do. The fact that Lisa is still here with us is in large part to your great care.

Here's a few pictures of Lisa that I hope will brighten your day. Thanks all!

Happy Halloween

2011-10-31T23:45:00.001-04:00

Chrissy, the eskimo, Thomas, the black reaper, Maranda, the baby, Lisa, the mouse

Happy Halloween....hope everyone got lots of goodies! Lisa sure did. As usual, she digs down and finds her super energy to hit all the houses with lights on from 6;30 - 8:00. She went as a mouse this year, but perhaps an energizer bunny costume is in her future!

She certainly is an inspiration. She just has so much energy and love of life. Radiation doctor said that Friday will be her last session. We're not quite sure what happened to her needing it for 6 weeks so I will be following up with her primary oncologist soon. While her head pain is much less, she still complains a bit about it, as well as, leg pains pretty frequently. If she is done with radiation then we will have to push for them to start chemo drugs again. Sadly, this is not a cancer that can currently be cured; it is one that keeps us on our toes looking and praying for ways to get the most time with this wonderful child.

Have a great night! Keep the faith and live every day to the fullest:)

Loving Life

2011-10-26T15:18:00.001-04:00

Lisa is feeling much better. She started radiation last week and continued this week. She is feeling so much better that she actually went to school for an hour yesterday. You go girl!

She spent the weekend loving life and with her loved ones this weekend:

Ice Cream...that's what she wanted for breakfast!

Enjoy Sunday weather on the lake before we put boat away for the year.

Grandma Y and Lisa

Bald is beautiful

Plane ride up to see Grandma Mac

She is home!!

2011-10-22T09:05:00.001-04:00

Wow...I cannot believe all that has transpired in under a week.

Lisa seems to be feeling a lot better. She came home last night and was up and talking and playing for HOURS! Last Sunday and Monday, I think she averaged one hour of awake time for the whole day. She is feisty and teasing Mike and I every chance she gets.

Mike has been wonderful!!! Lisa kicked him out of his spot in the bed last night and he still came up to check her pump 3 times in the middle of the night while I just lay there sleeping.

Uncle Al is taking the older kids up North to see Grandma Mac this morning which means Mike and I won't be outnumbered and we can relax a bit. Lisa made sure each of her sibs lavished her with hugs and love. Chrissy apparently was the last one and Lisa told her "hey, you walked right by me...aren't you going to give me my hug?!"

A big thanks goes out to the "Rainbow Lady" and Central Middle school. Rainbow Lady sent over a hand made quilt for Lisa and it was waiting for her when she got home. Later in the evening last night, one of the teachers from CMS stopped by our house to deliver an envelope of gift cards.

These gifts and the support and prayers we get from our readers, our family and friends, our community are what help us to stay strong and know we are not alone. We all know it takes a village to raise a child....and YOU are our village.

Thank You so much! Today is a gorgeous fall day in Michigan...make the most of it. Go out and life life to the fullest!

WOW---Please Pray---FOR THANKS!!!

2011-10-21T08:01:00.005-04:00

Thank you to all of our followers who have offered up prayer and support. Neurosurgeon saw Lisa this morning and told Mike she will most likely go home TODAY!!!!! While the docs are good, and Lisa a fighter, this does seem to be God's way of reminding us that HE is GREAT!!!
((I am so happy...crap...now I cry!!!! Really...a whole 10 minutes of tears in the last week and now the floodgates open....seriously...get a grip woman:))
Reports from Matt, aka "the Godfather" and Mike say that Lisa did really well yesterday. She had her "mask" made for radiology at 7am and was a champ about it. Later, she got her first dose of radiation and had no problems. When she called me last night at 10:30pm, her perky little voice said "Hi Mommy" (more tears) and when I asked her about the mask and radiation...she said "I just slept thru it:)"

Plan is that she will get radiation today and then M-F for the next 6 weeks. My guess is that she will get her dose today and then be discharged. Fingers crossed. Knowing that she had brain surgery on Wed and they are considering letting her go home today....wow!!

Special kudos goes out to PCEP. With 6000 plus students they are still able to hit home on a personal level. I got a call from the Canton HS Asst Principal yesterday. He was calling to let us know that one of Maranda's teachers had sent him information regarding Lisa and that the school was thinking of us and was available to help and provide services in any way they could.

I was also touched when our priest from St John Neumann sent me an email saying that he had heard "the latest going on with Lisa, know that my prayers and all of St. John Neumann are with Lisa and the entire family, PLEASE let me know if there is anything else from you need I will drop anything"

Got to thank the Godfather for taking off work to be with us on Wednesday and staying with Lisa on Thursday so Mike and I could work. Sam and Maureen who joined us at the hospital to help us pass the time on Wednesday get a big warm HUG along with: Lisa G. who dropped what she was doing to run to the store and get groceries we needed; Kim, Chrissy's GS leader, who sent an email with a plan of action to get her to the play last night; Laura who along with many others got my frantic text and was first to respond saying she could take the kids overnight Tues; Mary and Alan who also keep track of our kids so they get where they need to be. I'm sure I'm forgetting someone....sorry if it's you. I'm just so thankful right now! My mind is a whir. People always say that they couldn't do what we do...well, yes you could. Some of you are already doing it WITH us, and all of us would do what we have to do. That being said, I wish this on NO ONE and ask God to bless each and every one of you.

Please send up a special prayer of thanks to God. We've been keeping Him pretty busy and He has granted us more time with Lisa. Healthy, feel good time. How much time, I don't know, but as someone reminded me, none of us have our date of expiration stamped on our foot. Nobody really knows how much time they have. Lisa is a fighter and none of us are ready to give up!

Have a GREAT day and remember to live each moment to the fullest:)

Safe and Sound---Yeah!

2011-10-19T18:15:00.000-04:00

Lisa is out of surgery and is safe and sound. She looks really good and seems comfortable. Once the anesthesia wore off she started eating sour patch worms, compliments of Aunt Sam, and potato chips compliments of her nurse. She may not be nauseous, but I am!

Prior to surgery, she requested that per tradition, Uncle Matt shave her head. Here are some pics:

Neurologist just stopped in and took a look at Lisa and said she said is doing better than any patients he has done this surgery on especially considering what he saw on the scans....you go girl!!! Yeah

THANK YOU THANK YOU THANK YOU FOR ALL THE WELL WISHES AND PRAYERS!!

We'll take option 2

2011-10-19T13:57:00.000-04:00

So after looking closer at additional scans and talking to all the doc teams we've decided that best place of action would be to drain the fluid using an endoscopic third ventriculostomy procedure which involves creating an opening in the third ventricle so that the fluid will hopefully be redirected thru that and then absorbed by the body and relieve the pressure in her brain. They are also putting in a rickam reservoir which is similar to a port where additional fluid can collect and can be easily drained if needed. This will be another magic "button" in Lisa's body.

Because of her being a chemo kid this was the least intrusive, least exposure to infection than option 3. Option 1 was ruled out, well, because we just aren't ready to go there yet. We've got a fighter and we are ready to fight. She was taken into surgery at about 12:30 and should be out by 3:30. Mike and I are feeling pretty good about things and are sitting in the cafeteria with Mike's sister, Maureen, my sister, Sam, and the "godfather" Matt.

It just seems like everything is going to be fine. How can it not be? Lisa is such a good kid, I can't fathom her leaving us now or anytime soon. Sadly, though, the leaving is what is the unsaid message. Time is of the essence...docs are encouraging us to make the most of the time because it's running out. That's what they say....which of course, we could say that about any of our lives....so we are hopeful that Lisa sails out of this and continues to beat the odds. We know she has done it before, and really how do the docs know when any of our time is up?

To do or not to do--brain surgery

2011-10-18T20:17:00.002-04:00

thank you to all who have responded to the post requesting prayers..keep it coming

it is nearly 8 pm and Lisa, Mike and I are here waiting for a room in the Intensive Care unit so we can begin getting her ready for next steps

Docs have given us three choices to treat the cyst/neuroblastoma tumor in her brain:

1) Do nothing except provide stronger meds which will help control the pain and most likely would have her sleeping for most of her days

2) Do surgery and place a shunt in her brain followed by rounds of radiation. The shunt would divert the fluid and hopefully relieve pressure so that she can function "almost" normally. There is some concern re:placement and size of tumor that leaving it could cause her to have some issues with balance, emotions, etc.

3) Do brain surgery followed by radiation. The brain surgery would involve removing as much of the primary tumor as possible. Because of the stage of her disease, this is not even considered a cure. It's considered palliative care because there are so many other sites where the cancer is present.

While number 1 seems a terrible choice, part of me wonders if perhaps it makes sense. Given the nature of neuroblastoma, are we just putting off the inevitable? How much more can Lisa really endure? Is this a chance to let her go with less trauma to her body?

Number 2 and Number 3 both have pros and cons. We need more info to make best decision. Some of that info should come once we get an MRI done and can determine if the cancer has spread to her spine, as well as, her brain. Also, we need to hear from the surgeons, oncologist and radiologist what the quality of life, timeline and risks are most likely to be for all the options.

Please, please, continue to pray and even beg for a miracle.

Thru most of the day, Lisa has slept. The time she is awake she seems comfortable and still manages to smile and tease. She really is a fighter.

A big kudos to all the docs and nurses. All the different teams have done a great job of checking in, sharing information and working as a team. Send extra prayers for all of our doctors that they are able to use their knowledge, skills and have steady hands in helping Lisa.

eek!! omg!! PRAY, PRAY, PRAY

2011-10-18T15:35:00.002-04:00

After watching Lisa alternate between sleeping and suffering with severe head pain and occasionally throwing up yesterday evening and night, I couldn't take it anymore. I had arranged to work from home today and after an email an phone call to our nurse decided best course of action to take is bring her to ER.

I got her here at 12:30 and we finally have CT scan results back. ER doc said premilinary report says:

" there is an area in the back of her brain that has a cyst with something (possibly blood) surrounding it, the cyst could be obstructing and holding cerebral spinal fluid....is definitely something there, not sure what it is...have contacted neurology to investigate further...technical term hydrocephalus ventricle"

PLEASE SEND UP EXTRA PRAYERS....this doesn't sound good..if suspisions are correct, my quick internet search leads me to believe there will be surgery and a shunt involved in very near future.....please let their be an easy fix so we can get on with living our lives!

Better but not Great

2011-10-17T07:47:00.000-04:00

Lisa is home and doing better, but not great. She still has a lot of headaches that are keeping her down. Her appetite and energy are low and she is still having occasional nausea. Her counts are low which means we will be keeping her home from school. Mike and I are talking with docs to try and get the headaches under control. We are also trying to figure out how to make an educated decision about whether or not to put her through a second round of this chemo regimen. The effects have been so bad they have really impacted her quality of life. If only we knew if the drugs were beating up the cancer as much as they are beating up Lisa.

Praying we get guidance and Lisa bounces back.

Lisa's Back Home

2011-10-15T10:34:00.000-04:00

First words ot of Lisa's mouth today...

Lisa: Today is gonig to be a big day.

Dad: Why?

Lisa: Michigan! Go Blue!

Sorry MSU. We cheer for you in other games,but not against UofM...they have given us a tremendous gift, time.

Yeah!!! We came home last night!

2011-10-15T09:50:00.000-04:00

Lisa looked a lot better when I got there on Thursday to take over for Mike. Friday morning at 9:00, when the doctors rounded our head doc basically said that with her being fever free for past 24 hrs and last two cultures being negative we could go home with an oral antibiotic and fluids and if third culture came back positive or if problems arose, we were only 25 minutes from hospital and we could bring her back.

Okay...apparently our nurse and the new resident need to get out the "frequent flier patient book". What that meant to me was run the last courses of intravenous antibiotics and get these folks on the road. At 1:00 when I inquired about discharge, the nurse quoted me the "48 hr and 3 clear cultures" protocol. Ummmm, I know the protocol, but also know the doc said we could go home and come back if culture is positive, so let's get things moving and get us out of here. Nurse said she'd ask the doc. At 3:00, I pushed again. Nurse quoted protocol. Really?? Go find the doc, we already picked up the meds he prescribed and he wouldn't have prescribed those for home if we were staying. At 5:00, I was getting a bit miffed. Besides the fact that we had been here ALL day, we now had a new roommate who was very medicated and sleepy and snoring VERY loudly. Lisa kept demanding that I make her get out of OUR room. I kept explaining it wasn't our room and we had to share. When our roommate spiked a temperature of 103 and infectious control was brought in, my "aggravated levels" shot thru the roof. Are you kidding me? The reason they have Lisa in the hospital is because she has no white blood cells and is at risk for picking up infection. Now we are sharing a room with a kid they have no idea what is wrong with her and are trying to determine what she may have that is causing her high temps and neck pain! I told the other patient's nurse to find me our doctor. She said she would let our nurse know. Meanwhile an aid came in to check on Lisa and I told her I wanted to see the doc. Minutes later I had a report from all 3 that doc was on the way. When our newby resident appeared at 6:00, she was apologetic about being awol for so long and said that our regular doc was gone and that the attending doctor did not want to sign off on discharge papers until the third culture came back sometime after 9:00. I looked at her and repeated what our regular doc had said that morning, she agreed that is what she understood him to say. I then told her that she could tell the attending that we were leaving with or without discharge papers. The resident nodded in agreement and understanding and said she would "quietly" go put thru the paperwork. I started packing up the bags, told the nurse I was taking them out to the car. She worked with Lisa on disconnecting her from the pumps and doing final flushes and we were out the door by 7:15 and headed home.

Lisa went in the house all smiles and hug, we never got a call about a "positive" culture, and now we are eagerly awaiting the start of the big game in a few hours! The lesson here...always stay on top of things and be an advocate for your child's health. You do know them best!

Have a wonderful weekend, live life fully, and of course, GO BLUE!

Another night at Motts

2011-10-13T00:03:00.000-04:00

Lisa is still in Motts. Her counts have plummeted to below one meaning she has no way to fight off any infection. Per protocol, they started running antibiotics yesterday. She will have to stay on these and most likely will remain inpatient until she is fever free for 48 hours and/or her counts starts to improve.  She looks a lot better than she did last night and is awake and moving around. She apparently slept most of the day which could explain why she keeps telling me "I can't keep still" as the hour approaches midnight.

I spoke with my manager today and let her know what was going on. She was very gracious and understanding and told me to do what I needed to do. They would work with me and my needs. I assured her that I would not let them down and that they could still depend on me to get the job done.  The ability to work remotely while Lisa is in the hospital has made things much more bearable and doable and I'm not feeling so much mom guilt. I'm also relieved that Mike will get more of a break and won't keel over from a heart attack!

Thank you to everyone who has answered my calls for help.  I now have a back up schedule in place for when Lisa is at home and many of you have offered to help out with whatever we need. While it seems like we have things under control right now, you just never know what the future holds, and we may need to take you up on your offers!

Please continue to pray, we are not ready to give in, give up or give Lisa back!

Lisa was admitted to hospital tonight

2011-10-12T23:30:00.001-04:00

This morning Lisa was very tired and I had a hard time getting her moving. Once I got her up, she didn't look good and kept laying back down. I had a bad feeling and started calling around for care. Luckily, our good friend Bonnie was there to save the day and agreed to watch Lisa. Just before I packed Lisa in the car, she threw up and walked like she was dizzy. I hurriedly took her temperature, expecting a fever. It was normal and I took her to Bonnie's and swallowed the guilt of leaving my daughter who was sick with a friend whom I hated to drag into this emotional position.

Mike picked Lisa up around 3:00 and texted me that she had a sore throat. I texted him back to keep an eye on her temperature because the chemo she had last week would most likely impact her counts and put her at a bigger risk for fever/infection. Sure enough at 5:00, her temp spiked. It came down for a little bit. I got home from work at 6:30. Lisa looked like hell. She was so pale and lay prone on the couch. Mike took her temp...it was 101.6. Mike packed his bag. Maranda and I traded barf buckets as Lisa began to throw up. It was so sad. She was so tired, she could barely lift her head. I was so concerned I was going to drive to the hospital with them, but Lisa's spirit shone thru as she told me she was okay and I could stay home;(

Mike and Lisa headed off to the hospital and the rest of us had a good cry; it's so hard seeing Lisa like this. Lisa was admitted to the hospital, per protocol...once a chemo kid spikes a temp, they are started on antibiotics and admitted for the night. It has been very stressful in our household. I started my new job this week and while I am thoroughly enjoying it, the timing couldn't be worse. I'm wracked with fear and guilt as Mike juggles his schedule to take care of the household, as well as, be point person for taking Lisa to the hospital.

Please pray that Lisa perks back up and the doctors can help us find a better solution that is not so tough on Lisa's system. We are not ready for this fight to be over!

Lisa is home..thanks for all the prayers

2011-10-09T22:50:00.001-04:00

Lisa received hydration at the hospital and returned home with Mike and was asking for steak. Big smile and giggles. I can rest easy tonight and have great hope that tomorrow will go smoothly. Thanks for all the prayers...keep them coming!

poor girl

2011-10-09T16:40:00.002-04:00

It has been one heck of a week and I am starting to feel the stress.....two lockdowns at Maranda's high school (the student has now turned themself in)....fri night, my uncle, who was at frankenmuth with his entire family, had what could have been a "fatal arrhythmia" (it was thwarted by his daughters who were there at the time he passed out--one called 911, while the other, a nurse, administered CPR---) he is still in the hospital at Saginaw as they try and figure out what happened....and the chemo Lisa has been on has been making her throw up every day with it escalating yesterday when she ended up throwing up almost every 2 hours, sleeping most of the day and not eating or drinking.

For most of the week, Lisa rallied and managed to get up, throw up, go to school for the first part of the day, go to the hospital, throw up, get chemo, take a nap, come home, eat, go to bed and start all over again.

This is the first time that Mike and I can remember that she has ever cried when throwing up. She has complained of a lot of head pain and we can't tell if it's the pain making her throw up or the throwing up is causing the pain. We are working diligently to try and get her meds right to control her symptoms.

We are scheduled tomorrow for blood draw and Mike will be following up with doctor. Being the seasoned chemo parents, we did not like the way Lisa look today so Mike took her to ER for hydration. We are hoping that perks her up and allows her to come home and start eating.

My new job starts tomorrow and I'm plagued with anxiety. While one part of me knows this is a great opportunity, my mom side just wants to sit, hold Lisa, and cry. That being said, I realize that wouldn't really help the situation and that I've pushed all my family, including Lisa, to get up and face each new day and go on with life because it's all we got. Shouldn't I hold myself to the same standards? Would staying home make any difference except give me time to lick my wounds? I'm not sure. Staying home makes managing Lisa's care much easier and perhaps eases the stress for the rest of the family, but when we are faced with frequent admits the stress will rise no matter who is with her and work/school is what gives us our sense of "normalcy"; a place to go where we can forget about the cancer for a while and feel like we are being productive.

I am keeping my fingers crossed, trying to slow my thoughts and heart rate as I prepare for my new adventure. I pray that Lisa has not come to the end of the line and I read and look at every option that is out there for the next direction to go. I pray God gives us guidance and helps provide answers on how best to care for her along with our other three children who surely are impacted by this evil cancer.

Despite all the stress, we did get a chance Friday to have a wonderful bonfire at the lake with our friends the Grendsya's and enjoyed some time on the boat yesterday. Hope everyone else had a chance to enjoy the great weather here in Michigan.
Please send up some extra prayers this week for all of us. Also, if anyone knows someone who is looking for work, we are considering hiring someone to help out with taking kids to sports, school events and even possibly stay with Lisa at the hospital some days if she is admitted. We wouldn't be able to pay very much, but we will do the best we can.

Thanks!

It never gets easier

2011-10-03T23:28:00.001-04:00

Thursday I was very excited to get a job offer for a corporate training position with a company in Southfield. My joy was short lived when I later found out that Lisa's scans had come back showing "multiple new foci of MIBG uptake mainly in the skull, thoracic spine, lumbar spine, left pelvis and bilateral femurs" . This basically translates to: the cancer has grown in most of her "bony" parts including her skull (which I was expecting because she has been complaining of headaches very frequently).

At the doctor appointment today, the decision was made to put her on the chemo drugs Cytoxan and topotecan. These were the very first agents she ever received. The docs are trying to hit her hard with the strongest drugs they have. Rereading the blog entries from the first chemo, I realize that even though we've been doing this for three years, it never gets easier. I still have all the anger, fear, queasiness, apprehension that I did that first time. I struggle with the best way to move forward yet still stay in the moment. I feel paralyzed with indecision and no control as "what-ifs" circle through my brain.

Given Lisa's situation, Mike and I have discussed in detail whether or not I should take the job offer. We've both decided that it is the wise thing to do at this time. We are hopeful Lisa has a good response to the drugs and continues to fight for numerous years which means we cannot put our lives on hold and "wait" for the inevitable. We must live each day to the fullest and make the most out of our lives. While the chemo regimen Lisa will be on is very rigorous, we are hoping that things will work out and that Mike will be able to adjust his work schedule to take Lisa to daily chemo treatments every third week. We are also hoping to find some people to help out in the weeks in-between when her counts drop and she is not feeling well enough to go to school.

I feel a great sense of guilt not being there for her every day she is getting chemo or if she is ill, but as my mother always told me "cross that bridge when you get to it". At this point in time, we have no idea how Lisa is going to react to the drugs this time around....she could have no side effects and be bouncing off to school like she usually does making this whole dialogue of how to juggle schedules a whole waste of time. If she does get sick, we will deal with it and as Mike says "Allah will provide"....God will guide us and give us the resources we need.

If Lisa's scan results weren't enough to remind me that each day, each moment is important, then the "lock down" at Maranda's high school campus certainly drove the message home. Nothing like yelling "love you" to your kid from your bed as she leaves the house to get to the bus stop and then find out two hours later that she has been in her first class the whole time because a note was found that stated a "threat of student retaliation.” After driving by the school, calling the school and texting various other parents and Maranda's friends, we finally got word that kids were in classrooms and being dismissed to the buses which would transport them home. By noon, I had Maranda and two of her friends at my house. While they were all very matter of fact about what happened and laughing about the rumours of shark in the pool, deers in the hall, bombs, etc I was still freaking out. Mike, trying to be helpful, gave me a statistical analogy of Maranda being 1 in 6000 kids so it was a slim chance that she'd be the one who was a victim if there was any danger. Are you freaking kidding me?! For the past 3 years, we've been the statsitic; of course if it was going to happen to anyone she would be a good bet!

So...it was a very long, eventful day. One that has exhausted me but not taken any of my loved ones from me. What more could one want? Tomorrow is another day, one that I will face with hope and vigor as I attempt to live every moment of it! Pray, Pray, Pray!

Scan Week this week

2011-09-26T07:38:00.001-04:00

Sorry for such limited posts this month. Between back to school and my Gold Ribbon campaign I slacked off on the writing. Things have been going well. Everyone is finally adjusted to the new school routine and as the weather begins to get a bit cooler I'm already starting to think about counting down to spring:)

Lisa goes for scans this week. I my crossing my toes, fingers, legs...anything I can that we see no new growth since last scans. She looks so good and this new study of 10 pills a day is soooooooo easy. I pray and pray and pray it's working because it makes this cancer so much more bearable, yet, my cynical side seriously doubts how 10 little pills a day could do the trick. We will see know soon enough and I'll be holding my breath until Friday when they can give us results.

Life does go on regardless of cancer and we have pics to prove it:)

Maranda at her first homecoming for Canton HS; next week she goes to her second homecoming. That's the glory of going to "the Park" where there are 3 highschools and 3 homecoming dances you can attend! She goes to another one next week!

While Maranda was out on the town, we were enjoying the cider mill!

Don't worry Tommy and Chrissy were with us at the Cider Mill, somehow they escaped the camera!

As always, keep praying and live life to the fullest!

THE GOLD RIBBON...What's the big deal?

2011-09-15T08:12:00.000-04:00

We are half way through September and in 15 days you will be plagued by a sea of pink as breast cancer awareness takes the stage in October. I try to figure out what the big deal is and find that I can't quite articulate my point. So, borrowing from a multitude of parents who have posted on various sites below is the "deal":

We are seeking to bring the same awareness to Childhood Cancer as the Breast Cancer Foundations has done for their particular cancer. We want Gold to be as well known as Pink. We want a HUGE Gold Ribbon hanging in front of the White House during the Month of September. We want to see gold bats used by the Major League Baseball players used in their game's. We want to see Gold footballs used by the National Football League, as well as the Gold ribbon on their helmet's, shoes, uniform, and goal post's? We want EVERY TV news channel to mention childhood cancer awareness month EVERY DAY in September. We want money donated left and right to childhood cancer so that children can go thru treatment in a matter of months....knowing just what meds have the best chance of working on their type of cancer.....just like Breast cancer warriors.

Many children are subjected to numerous different chemo treatments because there is not enough research/money/funding to know what will really work. Most chemos were not actually designed for childhood cancer, they are things that have worked with different adult cancers. Kids don't have awareness, research money or the drugs they need. There hasn't been a new drug for any of the ped cancers in over 20 years.....WOW....would people be ok if that were the case for breast cancer?? Of course not, and we shouldn't be ok with our kids being left out..and we are not, we are standing up and saying SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!! GO GOLD!

Happy 14th Birthday to Maranda!

2011-09-12T00:03:00.000-04:00

Maranda turned 14 today! This had to be one of the least eventful birthdays ever, but she seemed pretty happy. Her one present was a laptop (of course that present counts for her birthday, Christmas, and Easter!) We had a nice dinner out and cake and ice cream at home.

The past week has been filled with celebrating birthdays, starting school and starting Lisa on a new study. So far so good, all things going smoothly. All the kids seem happy with their teachers and classes, Lisa is excited to be in first grade (although she spent two of the afternoons sleeping on a cot they set up for her in a side room!). We will be keeping our fingers crossed that the study she is now on keeps the cancer from progressing. It is one of the easiest ones ever!! She takes 5 pills twice a day. That's it....things could be so easy if this works...let's hope these pills can do the job of beating the beast.

School pics and bday pics coming soon!

Don't forget to keep your gold on... September is Childhood Cancer Awareness Month! A special kudos to Christine Progar....she wrote:

"I thought I would let you know that your blog post on Childhood Cancer Awareness month inspired me. I asked the principal of our school in Romulus, MI to support childhood cancer with our monthly jeans day. Know that Metro Charter Academy is going to donate part of the funds raised this Friday, 9/16 to the Children's Cancer Research Fund. Thank you for all you do for Lisa and other children with cancer. God bless, Christine Progar"

THANK YOU CHRISTINE!!! Great idea. What does everyone think? Are their similar opportunities that you could do at your school or workplace to help raise awareness that September in Childhood Cancer Awareness month...their ribbon is gold...and money is needed for research to find cures for Childhood Cancers!

Birthday - Continued

2011-09-07T07:55:00.003-04:00

We celebrated Lisa and Maranda's birthday last weekend on Saturday at the lake with a few folks that stopped by. OK most of you were there because the place was packed! It was a great day and the weather cooperated until the evening when the wind and rain chased everyone inside.

Sunday the kids and I went off to the Saline Community Fair. Animals, rides, and a smash-up-derby mud racing made it a hit. The photo is of Lisa and one of her BFFs enjoying one of the many rides.

Lisa's scans from last week were "stable" from her previous set and her bone marrows were negative. [Yeah!] Her lab work was improved enough to start treatment so she began treatment after school on Tuesday, 9/6. For the next few weeks she'll have only one appointment each week for infusion and after that labs and scans to determine the effect.

Keep sending her your very best. -Mike

Happy Birthday!

2011-09-02T22:11:00.001-04:00

Lisa turned 7 on Wednesday. I found my self wavering between gratefulness and anger. Gratefulness that she has doubled the time doctors originally predicted she had to live and anger that she has had to fight so hard for that time. Then I find myself thinking, thist is the life lesson I am supposed to be learning... to appreciate and be grateful for each and everyday. How many birthdays do I truly appreciate? How many times do I actually think about the year that went by and what the person accomplished or lived thru, or how they grew, or appreciate that they still have a decent quality of life? Probably not enough. With Lisa, it's easy to always count the blessings; but with myself or my other kids, siblings, parents, friends, I often take for granted that they have got another day, week, year under their belt...that they have grown, and that they still have a very high quality of life. I was having a conversation with my dad the other day regarding how he did in the city senior Olympics this year. He was lamenting that he only took one medal this year...it was bronze....prior years he's always gotten at least three medals with at least one of them being gold. I snickered as I realized that next year he would move up to a new age group and there are so few people that compete at that age he would get a medal because he's the only one that shows up! It struck me....I often fight so hard for the "gold" or to be the best, when will I realize that "just showing up may be good enough".

Enough of my philosophizing. Lisa had a great birthday and it was made special by many people. She was scheduled for a day of exams at the hospital. There was a major complication...there was a flood of all things in the basement of Motts which caused all of the scanners to go down. Our awesome techs let nothing stand in their way and moved Lisa to the adult side so that she could get her scan done. They also pulled strings and used all their powers to keep things moving along on time so that she could get out and enjoy her birthday party that evening. Each department Lisa met with provided her with presents for her special day. She came out of sedation quite quickly this time and mutter to me "Let's go". When I got her to the car she groggily informed me that she didn't even yell at me or act grumpy waking up this time. I asked her what was up with that and she said "Chuck E. Cheese". Hmmm...does this mean I need to go to Chuck E Cheese if I want to avoid the wrath of the waking Lisa...ughh!

We headed home and I was hoping that Lisa would get a little nap in before her party. No such luck, she was groggy, but ready to go. We had a wonderful surprise when friends brought by a present for Lisa. I had posted that I was looking for a "used" DS for her. They said they had one and brought it over nicely gift wrapped. When Lisa opened it, I noticed it was in a brand new box. Their response..."it will be "used" in a few minutes". I would love to argue the point or reimburse them, but I'm pretty sure they're not going to let me! THANK YOU for your generosity!!

Lisa had a great time at Chuck E Cheese. She had five friends join us and no one could have guessed what Lisa had been thru that day. She got her picture with the mouse, ran and climbed on the equipment, and used all her tokens. She had a wonderful time and kept on going even after the last friend had left. We finally went home at 9:30 and she succumbed to the pain from her bone marrow biopsy, asked for a pain pill and headed to bed.

She was up early the next morning and ready to go back to the hospital. We completed all the tests including repeat bloodwoork and EKG.

Today we received word that finally all the tests came back good enough to start her on the newest antibody study. So, next week, after her first day in first grade, she will head to the hospital for the new study. She truly is a warrior.

Tomorrow, Saturday, we are having a big party at the lake. Any of you in the area who are interested in coming, give us a call. We will be celebrating Labor Day, end of summer, life and fully appreciating Lisa, Mike and Maranda's birthdays!

HAPPY BIRTHDAY GUYS....I PRAY THERE ARE MANY MORE AND THAT EACH DAY IS LIVED TO THE FULLEST!

Get your GOLD on!

2011-08-29T02:30:00.001-04:00

As we quickly approach the beginning of September, I want to remind everyone that September is Childhood Cancer Awareness Month. Since my visit to St Jude last year, I've been on a mission to make sure that the month of September is plastered in GOLD. Why you may ask? Because GOLD is the ribbon color for Childhood Cancer and last September, on my first trip down to St Jude, one of the biggest childhood cancer hospitals in the U.S., I did not see one gold ribbon, shirt or anything that indicated that anyone knew it was Childhood Cancer Awareness month or that they even had a ribbon color!

Not surprisingly, the next month, October, everything was bathed in pink to show support and promote breast cancer awareness. Even the flight attendants on the plane were wearing jeans if they had on pink shirts! Everyone seems to know that October is Breast Cancer Awareness month, and if you don't know the color pink everywhere cues you into the fact that something is going on. Heck, even U of M had a pink ribbon painted on their football!

My goal , as the website Gold: The New Pink explains,"is not to take away from the efforts that have been made to advance the cause of breast cancer awareness or to suggest that breast cancer awareness is not as important, but rather to elevate the cause of childhood cancer to equal stature. So much more funding is given to adult cancers than for childhood cancer. The parents of children stricken by cancer want to level the playing field."

Do you know that:

The National Cancer Institues' federal budget was over $3 billion dollars. Breast cancer received more than 20% for funding, while all the major groups of childhood cancers received less than 3%.

The American Cancer Society put more than 11% of their funding towards Breast cancer which was identified in the "Society Priority Areas of Research", and Childhood Cancer which was listed in "Other Research Areas" again received less than 3% of the money.

In the past 20 years the FDA has initially approved only one drug for any childhood cancer • 1/2 of all chemotherapies used for children’s cancers are over 25 years old. • Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. • However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.

Again, the website Gold: The New Pink explains it well: "As a society, we like to say that “children are our future.” If we truly believe children are our future; why do we sit idly by while more than 12,000 children in the United States are ravaged by this disease each year, and approximately 3,000 die from it each year? Worldwide, 80,000 to 100,000 children die from a form of childhood cancer every year. EVERY YEAR! If we truly believed that children were our future, and our future was being threatened by this evil, would we not do something? We commit billions of dollars each year to protecting our country, and yet do so little to protect the generation to come from a disease that comes silently and kills so many."

So...I'm seeking to do my best to build awareness that CHILDREN GET CANCER TOO and they need funding, research, new treatments,new protocols!! All this comes first by making people aware and with that awareness comes action and funding.

Here's what I ask of you...three things....

1). Spread the word!! September, the month that many kids go back to school, is also the month to remember the many children who are fighting cancer.

2). Get your GOLD on! Wear something gold! The ribbon color for Childhood Cancer is GOLD because gold is a precious metal and the color symbolizes our precious children. Let's bathe the world in GOLD in September; you can switch to pink for October!

3). Continue to pray....many childhood cancer warriors are fighting a battle with few weapons...there are not currently cures for their disease so each day is truly a gift and your prayers buoy the children and their families along.

Have a wonderful Monday and for those of you who need some GOLD to wear, feel free to check out our BLASTnb website where we still have t-shirts and other BLAST items for sale.

We returned home on Wednesday

2011-08-26T02:42:00.000-04:00

We had a wonderful vacation on our beloved Topsail Island, NC. As always, I found the vacation far too short. Original plan had been for two weeks, then it was cut down to one week so we could return for Lisa's treatment, then it was bumped to 10 days to allow us a few extra days of vacation while still qualifying Lisa for a new study. Unfortunately, when we had her blood tested down in NC, her counts were not high enough to qualify her for a spot in the study and our U of M team had to let that spot go. The good part is that meant we could stay for a whole two weeks; the bad part meant more time goes by without Lisa's cancer being treated.

We opted to come home on Wednesday because Maranda wanted to be home "with her family" when she went for her high school orientation. While a small and simple request, it really reminded me how much we arrange our schedules around friggin cancer but downplay or overlook other important life moments. While leaving Topsail is never easy for me to do, knowing that Maranda is getting ready to embark on the great adventure of high school made it much easier to pack up. That and the fact that Irene was coming and I had already enjoyed 10 fabulous days at the beach and didn't need to end it with the frantic evacuation that will take place tomorrow.

So, we are home. The kids "hung out" with their friends today and I did absolutely nothing. I find I am once again suffering from Topsailitis and having trouble getting into the swing of things and actually having to "do" anything besides sit and read. I know the moment will be short lived. I've already started filling out the dreaded school forms AND trying to get a mental hold on next steps for Lisa. They've rescheduled her for scans next week so they can try and qualify her for one of the three remaining spots in the new study. While this sounds promising, my mind whirs with questions. Such as, shouldn't we have blood work done first to make sure her counts have improved? Can we sneak in a round of chemo before the study to try and beat back the disease before putting her on new study? What will we do if these scans show an increase in growth? It's only been three weeks, but Lisa has been more tired and having more aches and pains and this always makes me worry.

I'm sure my Topsailitis symptoms will subside and soon I will be at running top speed again. I only hope I can find a few remnants of sand in my shoes to remind me to stay focused on living each day fully and appreciating each step on the path of life..whether it be a big or small moment!

Cancer does not take a vacation

2011-08-17T00:13:00.000-04:00

As some of you already know, Lisa's scans came back with more disease. While the news is disappointing, I've become so used to expecting the unexpected that it really didn't shock me much. I would have loved to hear good results, but when our nurse delivered the news I found myself shifting into the "where do we go next?" mode without even a tear or need for a drink!

Lisa's medical team deserves a high five for all their efforts. They knew that we were getting ready to go for a 2 week vacation to paradise and we knew that depending on her scans the vacation might have to be cut down to one week. Once they saw the scan results last Thursday they called us immediately and asked that we bring Lisa in the next day so they could examine her. We already knew we were going to abandon the previous study and the team had been diligently working to reserve a spot in the next study. By having us come in Friday they could start the paperwork and tests needed to clear Lisa for the new study. They massaged schedules, double-checked timelines and made arrangements to have a blood draw done in North Carolina so that we could spend 10 days on vacation and bring Lisa back in time to start the study on Wed 8/24. It's not the 14 days that we planned, but it's better than 7 and only possible because of our UofM team's efforts!

So, I sit here typing this in the quiet of our beach house. Everyone has gone to sleep. We have a big crowd here and it is positively wonderful. The days have been spent sitting in the sun, swimming, walking the beach, reading books, gabbing, eating and having the occasional ;) drink! There is no clock, no schedule, no demands. The kids are "hanging" doing what they like to do and so are the adults. That friggin disease cancer may not take a vacation, but we will!

Hope all of you are enjoying the last weeks of summer and taking time to live life fully!

Scan week this week

2011-08-09T22:13:00.001-04:00

Summer is flying fast. We are doing our best to get the most out of it. Last week, the older kids went to camp and Lisa, Mike and I spent the day at the lake on Monday. On Tuesday, Lisa and I went to Greenfield Village with some friends and the first thing the group wanted to do was the carousel....as Lisa waited in line watching it go round an round she either made herself nausea or her chemo kicked in. I managed to get her off to the side before she threw up the red kool-aid and potato chips she had for breakfast . She sat on the grass while I went to the bathroom to clean her shoes and bring back paper towels. By the time I was back she asked me if i thought the other kids would go again when they got off the ride, because she felt better and was now ready!! Needless to say, I said no and watched over her closely for the next 3 hours as we battled the heat and she skipped around the place...the kid is a trooper. Wednesday, Lisa and I went to Jungle Java and she spent a good few hours running around with her friend and her baby cousin MacKenzie. Thursday was doctor day. Friday, we headed up north to the campgrounds near Michigan Adventure. Lisa was very excited knowing that there was only one more day until she saw her siblings. On Saturday, we picked them up from camp (they were not very excited to see us...the LOVE camp and wanted to take the bus home with their new friends). We spent the afternoon dipping our toes into cold Lake Michigan and swimming in the warmer, adjacent Duck Lake. That evening we had a bonfire and Sunday morning we were joined by another McMaster clan to hit up Michigan Adventure. The kids all had a great time and Lisa even tried out a roller coaster! (You can see some pics on facebook) We closed the park and headed back to camp. On Monday, we packed up camp and spent the afternoon leisurely tubing down the White River in Muskegon. We returned home last night and today began first day of scan week. Today, Lisa only needed an exam and injection. Tomorrow will be the long day...she will have anesthesia and then have an MIBG scan, CAT scan, and bone marrow biopsy. Thursday is just MIBG scan.

We, of course, our hoping for stable or improved scans. Unless there is an enormous decrease in Lisa's disease, we have already decided that we will be pulling her off the most recent chemo study she has been on. While the side effects haven't been too horrific, it doesn't make sense to keep putting her thru them when there are other drugs that could work to keep the cancer at bay without making her feel lousy for a week at a time. Lisa's doc has already indicated there is another study that looks very promising that they want to put her on and they are working diligently to get her into it. We won't know until next week whether or not she has a spot. This means we may need to cut our vacation to Topsail short......ughhhhhhh!!! But we will do what we need to do.

That being said, please keep fingers crossed and prayers going that Lisa's scans come back with good results. And while you are sending up your prayers, please add a few extra prayers....one of thanks for my Mom whose doc says her cancer appears to be responding to treatment....one of strength for neuroblastoma warrior, Deshawn, whose road is coming to an end....one of guidance for Bridget whose scans have come back with more cancer and the docs and family are trying to determine next best steps.

Hope everyone is enjoying summer and living each day fully!

2011-08-03T08:30:00.002-04:00

Hello everyone and thanks for checking in. Mike here at the controls for a change. It's been a while since we've updated the blog and only the second time since the fundraiser so it's way overdue. We've been keeping busy with plans taking us places every week and those excursions have been a wonderful distraction.

Lisa is currently on a new study that is testing the toxicity levels of a new oral chemo drug. That is to say that the chemo is an old flavor but just in a new pill form. Since beginning this study she tends to throw up on the chemo days about once daily but that stops when the chemo stops. Other than that the side effects included mouth sores after the first regimen and she's prone to get tired more quickly. [longer naps] Alternating with the naps is Lisa on high speed.

Prior to the study Lisa's been doing chemo about every third week since January with very little side effects and steady progress against the disease so we were somewhat reluctant to make any change but this study requires, as do most, some amount of cancer so as to judge it's effectiveness. This study also doesn't effect her eligibility to enroll in others that we may elect to participate in later.

Lisa is scheduled for scans next week so keep your fingers crossed and your Crosses handy. Send her your best mojo, healing thoughts, and prayers. She continues to be the same happy bubbly little girl that you saw the last time you met her. I'm convinced that all the positive energy and her state of mind [happy - care free] plays a significant roll in her ability to stave off the disease.

Thanks again for checking in and I hope you and your families are enjoying a happy healthy summer.

Slainte'!

Things are going well

2011-07-12T23:42:00.000-04:00

Lisa is doing well and we are doing our best to enjoy summer. We kicked off summer vacation by spending the first two weeks at the lake house. While we were there, Lisa started a new chemo regimen. It is not one of my favorites. The last three mornings she was on the chemo meds, I was woken up by her climbing into bed next to me with her barf bucket. It apparently bothered me more than it did her because once she was done being sick, she handed me the bucket and the first day went back to sleep, the second day she handed me the bucket and went off to resume playing cards with her cousins, and the third day she put her suit on to go swimming in the lake. We think we can get the nausea under control with meds, but I can't help but question if this really is a better regimen than the original one. I struggle knowing we have to give her more nausea meds so she can tolerate this treatment. It just seems like we are cramming more and more meds into her system when it may not be necessary, especially knowing that on the original ones she rarely got sick.

The timing of the new chemo meds is also a pain in the butt. The original regimen had us going to the hospital every third week for 5 days with blood draws every Monday in between. This regimen has us going in on Thursday for chemo infusion, then the next 4 days we do the chemo pills at home and need to assure they are administered at the same time each day and the dosing is done one hour apart. We return the next Monday for a blood draw and then one week later on Thursday for another chemo infusion. We then do blood draws the following Mon and Th. So while we technically spend less time at the hospital, it sure doesn't feel that way because we have to go back twice every week....grrrr.

This is a new study and one that they hope will have an impact on neuroblastoma so our plan is to try another cycle and then have scans done. Depending on what scans show will help us decide which regimen we want to continue with. If the new chemo regimen shows that the cancer has decreased greatly than we will stick with it and try to settle into the new routine. If scans are status quo, then we will go back to the original treatment that causes her less upset and is easier to remember and schedule around!

Yesterday after the big storm (the one that ravaged the subdivision just on the other side of Joy Rd from us, but thankfully only flipped over our recycle bin) was over we went bowling and to the movies. Today we went to the water park for the whole day, followed by dinner at a restaurant, and then a rented movie to enjoy at home. Everyone should sleep well tonight!

That's it for now....we continue to try to live each day to the fullest and make the best of it just as Lisa does; she leads the pack with her energy and enthusiasm!!

arghhhhhhh.....

2011-06-30T20:03:00.001-04:00

honestly, that's all I feel like writing. Things have been a bit chaotic since BLAST.   While Lisa has been doing quite well given her "disease" it seems like life is getting bumpy again.

I've struggled again and again to figure out what I want to write and just find that I am, once again, devoid of emotion and brain functionality. So here is a quick list of what has popped up in the past three weeks:

3 weeks ago, right after BLAST I found out that the tiredness that had been plaguing my mother was due to small cell lung cancer that has spread to her liver.  Prognosis is 3 mos with out treatment, at least 6 mos with treatment. Her chemo started this week.

2 weeks ago, we found out that Lisa did not get a spot in "virus" study (which is probably for the best because she would have had to been isolated for a good part of the study and that is no fun during summer!)

Last week, while Lisa was getting her scans, Maranda finally got to see her orthopaedic doctor to discuss her sore foot and back. The doctor recommend she have a bone scan done (something that had I been more on my game I would have insisted she get it done the next day side-by-side with Lisa, but alas, I scheduled it for this week). Doc also recommended that Maranda start physical therapy for her back.

Today was a triple whammy of excitement. Lisa started on her new chemo regimen which includes two agents she takes orally and one that is given thru IV. She is one of the first kids to be on this study at U of M so there was a lot of double-checking and coordination of time, drugs, etc. As I went to pick up the oral drugs there was a snafu at the pharmacy that set us back an hour. I put that hour to good use as I ran Maranda over to the bone scan to get her started.

The scans ended with surprising news to me, while Maranda has been insisting for weeks now that her foot hurt so bad she thought it was broken, I totally expected nothing to come of the scans. Would my life ever be so predictable? Maranda has a stress fracture in her foot. So for sure there will be at least one more doc visit for her with the ortho to figure out how to treat it.

And the final moment of excitement, Mike who found out a while ago that he has an under active thyroid had a follow-up appt with an endocrinologist today to determine the extent of the problem. Turns out he has Hashimoto's Disease....yeah, no, that's not a joke. I googled it. It really is a true disease;  it affects your thyroid and basically your immune system attacks your thyroid gland. Seems pretty minor given diseases and looks like it can be kept under control with meds.

Hmm..sooo....it doesn't seem so bad when it's typed out in list form. Guess it's just life challenging us...again!

On a good note....Chrissy turned 12 last week on June 20 and she enjoyed celebrating with the girlscouts.

BLAST...still waiting for final results

2011-06-14T00:21:00.002-04:00

Event went very smoothly. We had less people this year....closer to 200 kids instead of the 300 that we had last year. Rick, our neighbor, came on board this year as our "accountant" and is still counting the money from the event. I'm guessing/hoping that after we cover our expenses we should have between $5000 - $6000 to donate. We are still taking online donations via website and have the BLAST paraphernalia available for sale there as well. Hopefully that will boost the number a little bit.

Everyone seemed to have a good time and different people like different things...Mark Rosenthal and Animal Magic was great and had some of the girls getting ready to make a run for it when he pulled out the tarantula. Matt--the Godfather-- was a hit with "Aqua Blast" and I did indeed get "Blasted" for $100 raised by the crowd (jury is still out who put up money first my brother or my mother-in-law!).   The Mott's staff who made an appearance proved that our nurses and doctors are now part of our family as each one came by to say hi and offer a helping hand. Nurse Martha arranged for her niece to bring some sheep, chickens and a rabbit so we could have a small petting farm. Terri and Leslie arrived with princesses to help Lisa have a "BLAST". Dr. Yanik and his wife, nurse Mari Beth, showed up with some teenagers and were put to work. Nurse Rhonda had fun setting the first record for one of the Minute-to-Winute games. Hulsing, Lisa's school, also provided tons of support. One of her teachers from last year, Mrs. Riedl, was instrumental in helping me decide to do BLAST again this year and took on the role of volunteer coordinator. Many of the Hulsing teachers were there volunteering and helping out. Becky, a Hulsing Mom, solicited baked goods from other Hulsing parents and had bake sale at the event raising nearly $450 Saturday. Two familes really overwhelmed me with their unsolicited kindness and support, The Millen family showed up on my door step, literally, and showed me window art they had created in the shape of gold ribbons. They then customized some for BLAST and donated them for us to sell. Mark Freeland sent an email offering to build customized glider kits that we could sell to raise funds. People are amazing!

Speaking of amazing...Chef John is one of the most generous, amazing people I've ever met. For a second year, he has stepped up and with Chef's Against Cancer provided AND cooked all the food for BLAST. Not only does he provide the food, he brings along volunteers including his wife and one of his cousin's, Jane, who do a fantastic job of helping setup and serve the food.   Rave reviews were given to the raffle room once again...coordinated and run by my sister-in-law, Mary, it was amazing. Lisa and Bonnie, my right-hand and left-hand girls, were by my side from day one and were stealth-like in getting the work done, seems like I would barely get my words out and they would have things done without even blinking an eye. They both did a great job in helping out and were jack of all trades from getting raffles, setting up funfair, organizing the crafts and attempting to keep me sane and focused! My good friend and late-night soul mate, Candy, worked with me until 3:30 am Saturday morning to finish setting up and organizing for the event. Sue and Sarah were behind the scenes workers making phone calls and raffle pickups. Mike was pivotal in helping with all the setup and getting support from the airport and EAA. The kids and their friends were tolerant of the stress brought on by planning this event and helped create games, signs and managed the sucker sales which help fund the event. Sisters, brothers, cousins, friends, volunteers from the community were all an integral part in making BLAST a success and I can't thank you enough!!!!!!

I was happy to see that we had a few of our "cancer warriors" attend and as I watched those children have fun at the event, the reason I do BLAST crystallized. I do it, because there is strength in numbers. I do it because knowledge is power and the more people we can educate on what it is like to live with cancer, the more people we have working to help find a cure. I do it to help build support and awareness so cancer warriors and their families don't feel like they have to walk alone. Many people are willing to lend a hand, give a shoulder to cry on and share stories of their own experiences in order to provide support and offer hope.   I was reminded, once again, how blessed we are. Many, many people stepped up to help with this event and did their share with a smile on their face and love in their heart. I may have organized this, but couldn't have done it without all their help. I am grateful to everyone and know that BLAST definitely had an impact on me.

Please keep hoping, praying and living!!!

PS and buying and donating!!! The BLAST store is open and selling items and taking donations! http://www.blastnb.com/

One more day until BLAST

2011-06-10T08:04:00.000-04:00

We are busy, busy, but very excited! Tomorrow is going to be a great day!!!!

Mark Rosenthal is bringing his animal magic to entertain everyone. There will be lots of games for the kids to play. We will have karaoke, princesses and lots of raffles including a signed Kid Rock t-shirt, premium Tiger Games package and Motor City Casino Hotel package. Be sure to check out the BLAST website for all the details. For those of you not able to attend this year, we do have an online donation button and online store on our website if you would like to participate that way!

For any FaceBook readers, please join us in promoting the event by changing your FaceBook profile picture to our flier for the next 24 hours. How cool would it be to see the flier on everyone's profile scrolling down the page. Here are the directions: Click on the picture of flier; it will open to full size. Scroll down and click "tag this photo" in left hand corner. Click on the photo to start tagging and add your name.
Once you are done with that, go back to your wall photos, find the picture now located in your photos. Click on the picture, it will open to full size; and crop it so that the entire picture is selected. Click "done cropping". Your facebook profile should update to the flier!

Thanks!!

Hope to see you at BLAST tomorrow!

BLAST....we made it on the tv news listing!

2011-06-08T09:49:00.000-04:00

Yesterday was Lisa's "graduation" from kindergarten. As soon as she got off the stage, she demanded the ice cream I had promised she could have after graduation. Mike and I opted to go out for breakfast.

Princess Lisa was not to be derailed. She joined Lisa G and I as we went into downtown Plymouth to pick up a few last items for BLAST. She made sure to point out Dairy Go Round on the way. I said "Later". After each stop Princess Lisa asked for ice cream. After each stop, I said later (somewhere in my mind I thought maybe she would forget...yeah...who was I kidding?!) As we drove out of downtown Plymouth, she was again pointed out her favorite place...Dairy Go Round. Again, I said "Later, after your blood draw" In my mind, I was really hoping she would forget. It was hot, I had tons of things to do, and I was not feeling well. Once blood draw was done, Princess Lisa yelled the battle cry "ICE CREAM". Ok. I know when I'm defeated. I gave Lisa G a look, tried to figure out if there was an ice cream place on the way home and finally, recalling the kindergarten teacher's "oatmeal kisses" poem and it's message that kids grow up before you know it I decided we would just go back to the Dairy Go Round.

As I placed my order for ice cream, Lisa G gave me a nudge and handed me the fundraising flier. I believe I gave her the deer in headlights look as I pushed the papers back at her and frantically shook my head...I could not do it, I could not ask for one more raffle...my brain was dead. As Lisa G, looked at me stunned, I walked away to the table with my ice cream.

As I went to take my first bite, I realized I had forgotten to pay! (told you, brain dead!). I went up to pay for the ice cream and heard Lisa G. asking for a donation for BLAST...you go girl! I also overheard a gentleman in line talking to a young lady about taking his picture in front of the Dairy Go Round sign for WWJ.

As the Lisas and I enjoyed our ice cream we watched the gentleman pose in front of the sign and get his picture taken. He sat down at the table next to us and Lisa G. said “Hey, I think he's on TV”. We took a closer look and recognized that it was Randy Bhirdo, traffic reporter for First Forecast Mornings on CBSDetroit. Well, apparently I wasn't brain dead, only in a short brain coma. I asked him what the picture was for and he said that he and his co-anchors were doing a little piece on their favorite ice cream. Randy, having lived in Plymouth for a long-time, favorite ice cream place is Dairy Go Round....just like Princess Lisa. You can see where this is going...I know...shameless....but I did it. I pointed out Lisa and told Randy we were doing a fundraiser this weekend to raise money for kids with cancer. Would he be willing to promote it on the air. He said absolutely. I provide him a flier and the information.

This morning, BLAST appeared on Randy's List of Things around Town along with the other things like the Tiger's game and Downtown Farmington Founders Festival. It was pretty exciting to see BLAST up on the tv screen with these other big events!! It's supposed to be on tomorrow and Friday as well for those of you who watch the early morning news. He did give it a little plug and invited people out. It was very odd how timing is everything and how all the stars aligned and we ended up being in the right ice cream place at the right time. Now, if we could just get Lori Pinson, the meteorologist from the show, to order good weather! Not too hot and no rain for the weekend!

Ok...enough blathering...I've got work to do...lots of it, and with only half a brain! Only 3 more days! Hope to see you at BLAST this weekend!

7 more days until BLAST

2011-06-03T08:11:00.000-04:00

Are YOU coming?????? There is something to do for everyone!

We have Mark Rosenthal & Animal Magic coming to do a performance. We have singing sisters performing! We have a firetruck, ambulance and princesses coming! We have a bouncy house, we have all kinds of games and foods. There will be Pampered Chef products, Rice Writing Jewelery, Face Flair, Cookie Lee Jewelry, Fudge for sale. Wonderful raffle items donated by very generous businesses in Plymouth and Canton. There's even rumour of a "flash mob" coming....if you don't know what that is, you should come find out.

Lots of people are coming...it's going to be a great day! Are you coming???

Get the details at www.BLASTnb.com!

Happy Birthday Tom

2011-05-28T11:26:00.000-04:00

Looks like this post did not go live last week...sorry if anyone somehow sees this twice!

Busy weekend!! Tom turned 13 on Saturday 5/21....now we have 2 teenagers in the house.....eeekkkkk!!!!

Lisa premiered in her first fashion show. It was held at Hillsdale Furniture in Bloomfiled Hills and was a charity event to raise money for her Kids Kicking Cancer group. She was the absolute prima donna!! When we first arrived she clung to me and played the shy act, wouldn't talk or look around at anyone. When it was time to do rehearsal she was in a panic and clinging to me.   The models were lined up and ready to practice. They were waiting on one woman...Tika...a model who does shows in Detroit, New York and Chicago. Tika was supposed to be Lisa's escort. Because she was late, they were switching up who was going to escort Lisa. The commotion got Lisa's attention and she started coming out of her shell. Just as the first model stepped on the runway, Tika appeared. She dropped her bags, stepped into place in line. I put Lisa's hand in Tika's and told Tika "just take her". Lisa did her practice run with no problems.

When practice was done, all the girls went to have makeup and hair done. As all the 6ft long leg ladies headed off to various tents that had been set up in the storeroom, the little girls were escorted to their tent to have their hair and makeup done. Lisa grabbed some chips on the way and once she started munching, she started having more fun. Her hair took no time at all to do;) and she was a pro at sitting to have makeup done. Her main goal was to get into the dress she had picked out the day before and was allowed to keep if she did the fashion show. Once her makeup was done, she put on her new dress, leggings, shoes and headband and a diva emerged. I have no idea where she learned this, but she skipped back to the professional camera man and started striking model poses. Once pictures were done, she carefully ate more snacks as we waited for all the girls to get ready. Lisa was happy and excited. As the countdown to showtime began, she got more and more animated and was dancing around to the music. The start time got pushed back 1/2 hour because the girls weren't ready. It got pushed back a second time 15 minutes because all but one model was lined up and ready to go. Tika. Lisa, the young diva, stomped her foot, rolled her eyes and said "Tika's late again?! Come on! Everyone is waiting!" I found this quite humorous. Seemed like they paired up the two diva's in the show!!

Things went off very well. Lisa was amazing! Once Tika appeared in the line, Lisa shooed me away and told me to go up front and take pictures. I was so proud of how well Lisa handled that stage. Apparently she does not know what "nervous" means.   That girl walked the runway and looked awesome.

Once the show was done, the little diva appeared, said she was ready to go home NOW and refused to take any group photos or pics.   As we walked into the showroom to find Aunt Sam and cousin Jacob, Lisa spied the vibrating recliners and jumped into one, put her feet up and started relaxing. I used this opportunity to go grab food. Lisa ate a few chicken fingers, got her second wind, and proceeded to check out the other food offerings and color at a table. Many people came by to tell her she did a great job. For each of them, she would look up from her coloring, flash a big smile and say thank you.

Don't know where she learned all this, apparently she's a natural! (more pics and videos to come!)

Keep up the praying! We had another set of scans done and her body is still responding to the chemo drugs and shrinking some of the cancer. This is the best we can hope for and it buys us time. They had Lisa scheduled to do a new study that involves being injected with the Seneca Valley Virus which most likely will have no side effect accept for flu symptoms but the belief that the virus makes the neuroblastoma cells die. We've asked them to hold off until after school gets out because Lisa should not be in public places. They do not believe the virus would be harmful to "healthy" people, but I don't think they want to chance a Seneca Valley outbreak in Canton, MI if we expose her to the masses at the fundraiser.

So, for now, life is good. Lisa is happy, smiling and full of energy. She is excited about her beat cancer party ---- BLAST. All of you readers leave us a blog comment or FB like to let Lisa know you are excited too and keep spreading the word.

BLAST 2011---Volunteer

2011-05-19T07:23:00.001-04:00

We have our volunteer link setup. For those of you who can help on June 11, please sign up by clicking HERE and entering your email address so a personal invitation can be sent to you.

We have some great raffles including Detroit Tiger Tickets, Ann Arbor Hands on Museum, Movie tickets AND we have a special guest coming to put on a wonderful show! Mark Rosenthal, Nickelodeon's 2010 Entertainer of The Year, will be doing one of his "Animal Magic" shows at BLAST.

Please be sure to spread the word!! If you are a facebook user search for Love You Lisa page. Click on the events link and let us know if you will be attending. You can also share the event to all of your facebook friends!

Summer "Do"

2011-05-17T22:38:00.010-04:00

Well, it's that time of year again. The chemo has taken its toll on Lisa's curls and with a whopping two days of warm weather last week she asked for her summer haircut. Hard to believe this will be the third summer in a row she starts with a bald head. Funny how it has worked out like that. I'd rather have my baldy baby around then no baby at all! Overall, she is happy and healthy.

She was scheduled for all of her scans this week because she is eligible for a study that will be opening up. The study would involve injecting her with a virus that has been shown to cause tumors to shrink at a steady rate. The fact that she would be injected with a virus made me ask about how contagious she would be considered and if she would be allowed in public. After checking in with the doctor, we realized that she would not be able to go to school or attend the BLAST fundraiser if she started this trial. The docs made the decision to push off the trial for a few weeks (I think) so that she can attend BLAST and also finish the school year (I hope). Because of the decision to push off treatment, they've cancelled most of her testing this week. She will still be doing the MIBG because she was already injected with the radioactive dye. This test tends to give us the best indicators as to the progress of her disease so it will give us an idea of whether or not the chemo is still working. Once we have that information, we will again find ourselves having to make some decisions as to how best to proceed with her treatment. As always, we ask that everyone please pray that we make wise decisions that will continue to allow Lisa live a high quality life.

BEST Mother's Day ever

2011-05-09T08:13:00.000-04:00

Yesterday was the best Mother's day ever...I think it even rocked more than my birthday.

Mike had taken the kids to the Lakehouse Saturday night and brought them home Sunday morning. I had just decided to take on the day at a luxurious 10:30 am when Lisa burst into the bedroom yelling "Happy Mothers" day. Maranda followed with a tray of food that she cooked for breakfast. Lisa gave me a big hug and a kiss and then with her exuberant voice announced "oh no, I'm not giving you my present because then I have to do chores!!" and ran from the room. Her present (which I received after dinner) was a card she made in school that included little paper flowers that listed 3 different chores she would do...LOL.

When I finally made my way to the kitchen there were my special pancakes made by Chrissy with help from Thomas. Once all food was consumed, the kids hung out at the house and gave me a helping hand whenever I needed. We spent part of the afternoon launching screaming balloons and then chasing them down and getting them out of the trees. A nice nap came after all the activity. We then went to the evening mass and had a wonderful steak dinner cooked by Mike followed by a bumpy cake from Sanders for dessert and a present of my favorite gum and coffee drink.

Wow...it really was awesome. I was just telling someone how Mother's day is traditionally pretty non eventful around here. It was nice to be proven wrong.

Now, it's a return to the real world. Time to hit the road today and hang fliers for BLAST and get some raffle items. Anyone want to join me;)

BLAST 2011 --- June 11---WIN 10 FREE raffle tickets

2011-05-06T23:59:00.012-04:00

If you haven't already, please mark your calendars for June 11 and spread the word. Our fundraiser is fast approaching.

Click on flier to enlarge and print!

If you live in Michigan, you could win 10 free raffle tickets to use the day of the event. Just print off the flier (in color if you can) and ask if you can post it at your work, church, gym, favorite restaurant, wherever!!! Then email info@blastnb.com a compiled list of all the places you put the flier. The person who puts up the most fliers by Saturday, May 21,will win 10 free raffle tickets to use the day of the event!!

If you don't like to hang fliers, perhaps you own a business, know someone who does or have access to a great raffle item. For every raffle item you provide, you can win 5 free raffle tickets (you don't even have to use them on your own raffle item!).

I know everyone reading this has it in them to help...make one phone call, send one email, ask some one if you can hang a flier or if they can provide a raffle item...it's easier than you think and will help us to raise funds to BLAST cancer.

ALL the money we raise, less our event expenses, is donated directly to UofM Mott's Children's hospital for childhood cancer research and to Rainbow Connection, a Michigan organization that grants wishes to children with terminal illness. And, as many of us rev up to do the ACS walks in May, check out this information. You will be shocked at how little funding goes to research for Childhood Cancer.

Chemo week

2011-05-02T22:43:00.001-04:00

It's week 3 and off to chemo again. Today was pretty crowded with kids and we ran into one of our neuroblastoma buddies, Jonah. He is doing well and his response to treatment helps buoy us along. We also were able to visit Hunter, the fourth grader at Lisa's school, and she was hopefully getting sent home today.

It is very eye opening to watch all these kids just take cancer in stride. It is what it is and it is part of them, part of their daily life, it's normal to them.

How strong they all are. How wise. They get that today is the day you should be focusing on....what your doing every minute, every second is what's important, not what's going to happen, when or why.

Hoping that I am learning from all these wonderful teachers and finally getting how to live each day fully!

BLAST Childhood Cancer planning is in full swing and will be June 11 from 12-6. Mark your calendars and if you have any good raffle items or know of any vendors who want to set up a tent, email info@blastnb.com. Thanks!

Happy Easter

2011-04-24T21:25:00.000-04:00

Hope everyone had a wonderful Easter. The last few weeks have gone very well. Lisa is handling her every third week of chemo very well. She seems to tire easily, but with a daily 2 hour nap is pretty happy and full of energy.

The last week was Easter Break for the kids and we enjoyed some movies, going bowling, and an overnight trip to Frankenmuth with our good friends the Grendysas.

The last two days have been filled with family, fun, food and lots of Easter eggs. We had a great time and enjoyed being outdoors for a few hours each day.

Mike and I have decided we are going to do another fundraiser this year. Last years event focused on raising awareness about Neuroblastoma and we raised $21,0000. BLAST 2011 will focus on raising awareness about childhood cancer and the need for research. The event will be June 11 from 12-6. We will have food, a funfair, vendors and raffles. Please mark your calendar and spread the word.

The event is only 6 weeks away! We can definitely use help again in arranging this event. If you have any good raffle items or are able to volunteer your time please let us know asap by emailing info@blastnb.com.

It takes a village to raise a child. Hopefully our village can also help us to BLAST childhood cancer.

Keep praying and keep living every day to its fullest!

YEAHHHHHHHHHH!!!!!!!!!!!!!!!!!! Continued Interval Response to Therapy

2011-04-08T15:04:00.000-04:00

Scan results are in....Continued Interval Response to Therapy (this means they are seeing less cancer than last scans and Lisa is responding to chemo) ...need I say more????

Scans this week

2011-04-06T07:01:00.000-04:00

Sorry for the lapse in writing, we've been a bit busy with life this past week.

Lisa went for her bloodwork and CT scan yesterday. Today is day one of the 2day MIBG scan. Not sure if it's because Lisa has been doing so well or just a feeling of complacency from doing all of this for so long, but up until yesterday I was feeling pretty positive and I wasn't anxious about the tests. .

However, as we strolled around the hospital yesterday, the sinking feeling in the pit of my stomach began to grow and a little bit of panic set in with a whole bunch of what-ifs. While Lisa has been doing extremely well, she has begun to come down with a cold and as yesterday wore on she was becoming progressively more pale. When they took her vitals, they looked up in surprise when her temperature registered 99.9. I told them take it again, they did and it was 98.6....I told them write that one down and we quickly exited before they did the standard 3rd try. We found out later that her counts are good, so I'm hoping the first temperature reading was just a fluke.

The what-ifs have mounted because Lisa tripped the other day and is continuing to have pain 2 days later. No one saw her trip and she didn't say anything until a day later. Buttttttt, since then she has been having a LOT of pain...tear-induced, face squinching, irritable, give me a pain pill now pain. Normally this would probably slip thru my radar and I wouldn't pay much attention to it; however, this last week we received sad news from Lisa's school. A fourth grader had fallen on the playground and while she seemed okay, she continued to have pain and it got so bad in the evening that her parents took her to ER for x-rays. The results had them travelling immediately to UM/Motts because it was discovered that she had bone cancer in her leg. This child and her family have jumped to the top of mu prayer list and have made me more cognizant about Lisa's ankle pain. It is pretty extreme and there is no visible sign of injury which makes me wonder if those evil little cancer cells have taken over her ankle.

I hope and pray that I am wrong and it's just from the fall that no one saw, but even as I type this my heart speeds up as I again wonder "what if" and direct every curse word I know (which is a lot) at those f-ing cancer cells. The anger wells up in me...I'm so mad at that damn cancer and what Lisa has endured. The scans better come back good and the chemo had better be working or I'm going to be very unhappy and everyone knows if Momma ain't happy, nobody is happy! Arrrrghhhh!

So for the sake of everyone else, I hope scans are good. I will keep reminding myself to breath and think positive thoughts.

As always, keep praying and offer up an extra one for our 4th grade school buddy!

Popsicle Party

2011-03-28T23:03:00.002-04:00

Yeah.....once again, Lisa sailed thru chemo last week. While she gets a little more tired than usual, it doesn't stop her from having a Popsicle party with her Motts' buddies!

So far so good, no bad side effects this week. She goes for scans next week which again will let us know if the chemo is stopping the cancer from progressing. It is the best we can hope for at this point.

Happy Spring!

2011-03-21T07:57:00.000-04:00

Things have going very well. Lisa sailed thru the last chemo round without a hitch. The weather here in Michigan has been warming up and we've been able to wear our lighter jackets a few times in the last week. Lisa loves being outside and going for walks. Only problem is the spring weather seems to bring on spring colds. Lisa is sniffling and coughing since Friday. While normally not something to be alarmed about, it always makes me nervous when she enters a chemo week with her immunity down. We start another round of chemo today and I'm hoping the cold doesn't throw her off track!

Keep your fingers crossed and send up a few extra prayers that she sails thru chemo this week!

Happy Spring...yeah!

See the PSA of Lisa with Gerard Butler on YouTube

2011-03-16T21:38:00.000-04:00

Lisa has been doing awesome. She sailed thru her last chemo without a hitch. She continues to go to school for 1/2 day of kindergarten and then returns home to run laps around the house, boss everyone around and then take a 2 hour nap in the late afternoon. She's even started kicking a soccer ball which may not seem like much, but it's tremendous giving the instability and pain she's always had in her legs!

We received news today that the Public Service Announcement that her Kids Kicking Cancer class did with Gerard Butler was finally posted on YouTube. We are hoping soon that it hits the public television stations...how exciting!!

You can view the video here: http://www.youtube.com/user/rabgkkc#p/a/u/1/iqoAGDvyr6Y

Keep praying and keep living every day to its fullest!

Lisa is doing great

2011-03-09T10:30:00.000-05:00

Well....Lisa seems to have sailed right through the chemo last week and we are mid-way thru the "week after" and she still looks good, feels good and is running around. I'm starting to think chemo is laced with caffeine!

Her limited side effects from the chemo this time give us hope that she can continue on the drugs for a while and that last month was just a fluke caused by some virus. At this point, all we really have are these drugs because she is responding and the studies that are available are just that...studies. There is no known success rate and putting her into one of the studies would mean she would have to discontinue the chemo. Doc's feeling at this time is that this chemo combination has been effective in the past and scans show that at this point the chemo is keeping cancer at bay so it's in her best interest to keep her on it. In other words, if it ain't broke don't fix it...unless something comes along that we know will work better or her body starts shutting down from the toxicity level of the chemo we stick with it.

So...while it's not the miracle of a cure or all cancer is gone...it gives us the one thing many of us wish we had...more time. She has been fighting for nearly 3 years now, almost double the 18 mos they originally predicted. I continue to pray that she will just keep going and going like the energizer bunny she appears to be. She is so remarkable in her wisdom and attitude for such a young age, I can't imagine her succumbing to this horrible disease. So I continue to pray, keep my fingers crossed and remind myself to breath and be thankful for each day...it truly is a gift.

Hair is falling out...again

2011-02-28T10:10:00.000-05:00

Lisa hair has started to fall out. Besides being a nuisance because it shows up everywhere...on pillows, shirts, floor, your mouth.....it's depressing. It's another physical reminder that this kid is sick. It's a total bummer and while you would think we would be used to it by now, the shock still runs thru me as my gut reaction in HOW will we do this? I know, the answer is...we just will, because we have to and we've done it before, but still the initial reaction takes my breath away and brings tears to my eyes. Lisa is fine with it....when asked is she wants a wig, she says no, just hats and tattoos on her head.

Other than the hair loss, Lisa had a great week last week. The kids and Mike were all home on winter break. The kids and I kept things pretty low key while Mike worked like a madman painting and updating bathrooms and other things around the house. I think it was his version of therapy....he could take something, fix it, make it better, he could control the outcome....something cancer has robbed us of.

Lisa's week consisted of eating, playing and goofing around. With a lot of mom willpower, she even went to her last ballet class. (That means her third for those who were counting). She did a great job even though she was having pain. She managed to even have fun and was very excited about getting a sucker at the end....ahhhh, the life lessons we learn from 6 year olds!

Unfortunately Lisa started off today by throwing up....she's fine now...eating breakfast and wanting to go to school. We think it was just congestion. She is scheduled to start chemo this week. We meet with doctor this afternoon to see if it's a go. Mike and I are on the fence how we feel about this. Without the chemo, her days are numbered. With the chemo, if she reacts the same way she did last time, her days are numbered and they are spent in bed with her feeling like she's dead.

I've come to realize we really do need a miracle to save her. Not a cure, but a good ole fashion water-to-wine, fish multiplying, laying of hands miracle. Interestingly enough the sermon at mass this weekend was "don't worry". Worry takes more energy than dealing with the problem one step at a time. So, we will face today, this week, this month, one step at a time. And, BELIEVE, BELIEVE, BELIEVE that God is watching over us and will choose to heal Lisa with a miracle.

Happy Birthday to Me!!!!!! Scan results in!!

2011-02-21T15:33:00.000-05:00

YEAH!!!! I've only wished on one birthday candle today and already got good news. Scans show:

MIBG results: Findings are consistent with interval response to treatment with residual MIBG avid widespread osseous metastasis.

CT scan chest, abdomen, and pelvis results: 1. Stable postsurgical changes/soft tissue in the retroperitoneum and enlarged left inguinal and iliac lymph nodes. No interval progression of disease.

2. Stable diffuse osseous metastatic disease.

In English...this means, that yes, Lisa still has lots of cancer, BUTTTTTTT the cancer in her bone is reduced including the skull bone on the left, spine, sternum, ribs, and pelvic bone AND there was no progression shown on CT Scan, in fact some of the lymph nodes are smaller. This means cancer did respond to the chemo and has shrunk in some areas and not progressed any since last scans in January. It's a small win, but we will take it!!! Best birthday news EVER!!!!!!!!!!!!!!!!

Still Waiting for Scan Results

2011-02-20T22:49:00.000-05:00

Lisa has been improving a bit each day and seems almost back to her old cheerful eating self again. She is still getting IV fluids at night because her potassium levels were low when she was checked last week. She still has quite the annoying cough, but then again, so does Chrissy. I think both of them must have had the same bug....Chrissy has been nauseous for the past two weeks, coughing and very tired. It gives us hope that Lisa's problems could have been bug-based and not all cancer/chemo related.

Lisa finished all her scans last week and we are anxiously awaiting a call from the doctor tomorrow. The doctor opted to push chemo out for another week so Lisa could have this upcoming week to build up her strength. It also gives us a chance to review the scans to see if the cancer has progressed and have a better idea of whether or not we should continue with this chemo regimen.

The kids are off from school this week and we don't have anything special planned. With Lisa and Chrissy being sick the past couple of weeks, we're a bit reluctant to expose them to any big crowds. Mike and I have been keeping busy painting and updating the house. It gives us something to do and keeps both our hands and minds busy.

We finally got some good news!!! Maranda saw both her orthopedic doctor and neurosurgeon because of some neck pain she had been having. Based on scans and exams, they see NOTHING wrong with her. The neck pain and popping she gets comes from a way she is manipulating her neck. Both docs have said "just stop doing that" it was so wonderful to here those words...what an easy fix....it's nothing, no worries, we walked out of their and it felt like a weight had been lifted!

Now, if Lisa's docs could just give us good news!! We are anxiously waiting for Lisa's scan results....I've had my fingers, toes, legs, everything crossed and have been praying, praying, praying for good news on the scan. We'll let you know when we know!

Thursday Update

2011-02-10T22:13:00.002-05:00

Mike here at the controls:
Lisa perked up a bit Wednesday and began eating pretzel rods and Frito Cheddar Cheese Dip. (Hey at that point we'd let her eat the sheets if it meant getting something in her.) She also began drinking more water which was probably the result of eating the salty pretzels.
Lisa was discharged Thursday at about 6PM and I took her to the cottage because Christina, our 11 year old, came down with a temperature of 99.5 on Wednesday and 101.5 on Thursday. I couldn't take Lisa home with a bug in the air. So here we are for the next couple days.
Lisa was sent home with with her port accessed and HomeMed delivered a weeks worth of IV treatments. We'll run these during the night to keep her hydrated.
She's sleeping a lot and mentions more and more that her legs or something is sore. Lisa doesn't complain. It's more of an observation of hers when something hurts. It's an ominous thought that I have at those moments that things aren't going quite as planned.
Next week will be a "scan week" and we'll know how well Lisa is doing on the inside. Barring any bumps along the way we'll be holding our breath until afterward and won't update the blog.
Say a prayer, light a candle, work the beads, whatever you got she needs it now. Thanks for sending any positive thoughts you can spare.

Reporting from Motts floor 7---dehydration update

2011-02-09T12:14:00.000-05:00

As I suspected yesterday, once I gave Lisa's nurse the update, she told me we needed to bring Lisa into ER to get her evaluated for dehydration. It was nearly 5:00 when we got the news. I'm pretty sick of being at the hospital, and while Mike is to, he gallantly sucked it up and brought her in around 6:00 pm. I took the opportunity to get out of the house for a bit and ran some errands with the other kids.

Mike kept me posted via text. At 8:15 pm, he wrote, "In ER, IV started, doc thinks it's what we thought...dehydration...might be admitted though. We'll see." One hour later he texted, "and we're staying. Labs came back and indicated she lost "a lot"of fluid...they are getting room ready" A lot of fluid translated to 4lbs in 4 days...that's a lot for a kid who only weighs 45 lbs!

I came up to the ER at 10:30 so Mike could go home and go into the office today. We were finally moved into our room around 11:30. Lisa seemed a little perkier, but then her diarrhea took over. Seems like whatever fluid they are pumping in, poor girl is pumping out....I changed at least 6 diapers in under 2.5 hours. Most of the night involved an hourly diaper change. She is awake this morning, but very uncomfortable and is whimpering quite a bit.

I'm waiting for the doc to make rounds. While I was anxious to get her released this weekend, I'm very reluctant to let them send her home too quickly now. Until they can get her stomach under control, I don't think we can take her home. She is drinking a bit and ate a pretzel last night, but it is not enough to sustain her and while stopping hydration might help stop other things, it will only most likely causes her to be dehydrated again. Hopefully the doctor will have some suggestions of how to get her back on track and get her bowels and cough (which we found out is RVS) under control.

Quick update....doc says some of diarrhea could be side effect of the chemo. While normally not an issue for Lisa, combine it with what was most likely flu in the beginning he thinks the combination of everything going on is just taking its toll. They are adjusting her fluids and potassium to keep her on the upswing. She has been up now for a few hours watching tv, eating pretzels (yeah!) and offering up few smiles now and then. Once her pain meds kicked in for her leg pains, she actually told me I was pretty as a princess;) Wonder what she wants?

Thanks for reading and praying!

Tuesday Evening Update

2011-02-08T21:55:00.002-05:00

Mike here: We decided to take Lisa to the ER this afternoon. She just wasn't getting any better. ER doctors pretty much confirmed what we were thinking which was that she had gotten pretty dehydrated throughout the weekend. The chemo, maybe a dose of the flu, and RSV took a toll. We expect she'll be back to herself after hydrating here for a day or so. She's starting to act a little better already and it's about 10:20 PM.

Princess Lisa is Still Sick

2011-02-08T11:16:00.000-05:00

Lisa has not eaten since last Thursday. She has been throwing up almost every day since and in the last two days has been having diarrhea.  We have force fed her maybe a handful of food over the past 4 days and she continues to drink water. Besides the stomach problems, she still has aches, pains and a horrific cough. It reminds me of the cough she had pre-cancer that never seemed to go away despite numerous trips to the doctor, lots of different meds and breathing treatments.  Docs finally labeled it as chronic asthma because they didn't know what else to call it.  When she was diagnosed with cancer, the cough disappeared and became a non-issue. Mike and I joke that maybe her cancer is gone and the asthma is back. That would be awesome!

Her aches have kept her bedridden for most of the past 4 days. Once in a while she wanders down to the living room where she will  lay on the couch until she regains some strength to go back up the stairs to bed.. Every once in a while, she leaves the room just to lay on the floor in the bathroom or hallway. Not sure what that's all about...she says it's cozy.

I'm very anxious and my mind is in a constant whirl wondering if this is the beginning of the end. I've heard the stories from other cancer mom's whose kids have died. Lots of times it wasn't the cancer that did them in...it was pneumonia, infection, flu bug...something their weak, compromised immune system didn't have the strength to fight off.   So, I sit here immobilized by fear looking for any sign she's getting better and putting off calling the doctor. I'm not sure what they can do for her that is different then what we are doing at home.  At the hospital, she misses her siblings, we don't have the comforts of home, she is exposed to many other germs, we have to wait to get her meds that we have readily available at home, and there are the mandatory vital checks that wake her up. It sounds weak, I know. I guess I'm scared of what they might find or say and know that I'm not ready to hear some of it. I'm not ready to let her go or give up.

So, I sit here and watch the clock. Noon is my cutoff time. If she's not eating and perking up by then, I have promised myself I will call the doctor and apprise them of the situation. Really hoping she does better in the next hour and already questioning whether one slice of cucumber counts as eating and gets me off the hook for making a call at noon.

As always, please pray!!

They are home!

2011-02-05T20:31:00.000-05:00

Linda and Lisa came home today. Most likely just a flew bug. We are keeping a close eye in Lisa.

Thanks for the prayers, keep them coming.

And, we're getting a room

2011-02-04T20:45:00.000-05:00

After spending 5 hours in ER where Lisa spent most of her time sleeping while they ran fluids and checked her blood counts the ER doctor strongly recommended she be admitted. I advocated against it reasoning that her blood counts were good and we would get better rest at home and wouldn't be interrupted ever hour for blood pressure and temp numbers. After 45 minutes of talking with various nurses, docs and Mike the ER doctor agreed to discharge her and send her up to the 7th floor for chemo. They could then make a decision regarding her staying or going home.

As luck would have it, we got one of the nurses we knew from our past stays. As I was pleading my case, Lisa threw up, her nose started to bleed and she stated she wanted to stay at the hospital. The nurse looked at me and I succumbed. Lisa had spoken.

We finally got into our room around 8:00 and Lisa continues to rest. Any time we move her she throws up. Her temp is staying at 100.4 so we need to keep a close eye on her. Hopefully she will bounce back quickly and this is just a bug and not a sign of things to come.

Have a restful night and keep sending prayers.

Extra prayer needed....Lisa spiked a fever and may need to be admitted

2011-02-04T14:58:00.001-05:00

I guess cancer is a little bit like the mailman....neither wind, nor rain, nor sleet, nor snow can stop chemo. Wednesday when most people enjoyed a snow day thanks to the weather, Mike and Lisa had to head to the hospital for chemo.

She seemed to be handling the chemo well, but had started getting a cold earlier in the week. That has now morphed into flu like symptoms with vomiting, aches, pains, cough and high fever. Unlike other kids fighting the flu we can't just keep her home in bed. As soon as her temp spikes, we have to bring her to the ER to get her examined. It most likely means an overnight stay at Mott's 7th Floor. I'm still hoping they will release her, but as the hours tick by, it's not looking promising. So while neither wind, nor rain, nor sleet, nor snow stopped her chemo this week, a flu bug may delay it. Total bummer.

I so miss the days when giving Tylenol, liquids and bed rest on a frequent basis was how we dealt with a bug. Send up an extra prayer that Lisa fights this and is able to regain her strength and ability to beat cancer.

EEK! After I posted this message, I stepped out in the hall to get a drink. There are kids EVERYWHERE in chairs and stretchers...looks like the bubonic plaque. I back in the room with Lisa where she is sleeping peacefully and I'm sealing up the door!!!

Chemo Week again

2011-02-01T16:01:00.000-05:00

How time flies.  Lisa is already back in for chemo this week. After this round, Lisa will have scans done the week of Feb 14 to see if cancer is responding to the regime. I hope and pray it is, because if it isn't, our options are very limited.

On a good note, we all had a wonderful weekend. All the kids went to Special Days camp Fri, Sat, and Sunday. They loved it and all came home tired but full of stories about what they did. The only complaint they had was it was too short. Maranda was glum all day yesterday and kept repeating how much she missed camp.....go figure, the kid that used to be terrified to go to camp and would get homesick is now "campsick". Everyone but Lisa is already counting the days until summer camp which is for a whole week. Lisa says she doesn't want to go for that long and was upset that her counselors kept bugging her about going;)

As for Mike and I we want to shout out a huge THANK YOU to CHEF JOHN at MotorCity casino.   Chef John, Don and their boss LUCIO provided all of our food for our Blast Fundraiser last June. They were integral to its success and once it was over, they invited us to visit them at the Casino. Seven months later, with the kids away at camp, we called Chef John and let him know we were going to be at the Casino.  Chef John immediately set about making arrangements for a room for us and worked with Lucio to get us into the 4 star restaurant Iridescence. Chef John instructed us to park in valet and call him when we arrived. He met us at the valet, guided us to the front desk, got us checked-in and made sure we had everything we needed. The room was beautiful and we went off to the casino to play the machines for a few hours.  Our dining experience was fantastic and we were flattered that Lucio made the time to come check on us and say hello. Even Don found the time to come up and say hello. It was wonderful...everything...the room, the food, the casino. Even though we were still close to home, it the perfect escape for the weekend. I cannot stop smiling when I think how Chef John and his associates went out of their way to provide us a little Rest and Relaxation...people I didn't even know a year ago being so generous and giving....it is these acts of kindness that make our world a better place and help us to tolerate such a difficult situation.

So, again, thank you, thank you, thank you to Chef John.   For a short period, we were carefree and worry free and able to have a wonderful time. We couldn't have done it without you!

As always, thank you to all of our readers whose comments, post and prayers keep us going and help us to find the good in life.

Keep praying and living life fully!

The Ballerina

2011-01-26T21:18:00.000-05:00

Lisa has been asking and asking to do ballet for some time now. During Christmas shopping time, she marched up to me holding a leotard and tutu and said "Buy this for me so I can take ballet class." I didn't buy the outfit (the princess already owns plenty) but I did promise to sign her up. Maranda played a big part in this initiative. Maranda has wanted to take hiphop for sometime and she did the legwork and found out the times and days for a ballet class for Lisa and a hiphop class for herself. The classes are only for 5 weeks which seems the perfect amount of time to figure out if they like the classes or not.

Lisa started yesterday. She was so excited; she told everyone that she was going to ballet class. When she got home from school she immediately changed into her leotard. She was a bit perplexed when I told her she had to wait until after the big kids got home because the class didn't start until after that. She managed to keep herself busy and took a nap waiting for her sibs to come home. As soon as the door opened, Lisa bounded down the stairs shrieking "Mom, Mom, let's go, let's go, we have to go....they're home it's time for ballet!!!" Needless to say, she was not happy to find out she had to wait until after dinner for the class to start.

Finally, the hour arrived. On the way over, she asked if I would be in the class with her. I told her I had to wait outside. She seemed a little worried, but I assured her she would be fine, she was a big girl and it was just like going to school. We got to the studio and she sat patiently waiting for her class to start.

When they opened the door, she jumped up and went right over to the room. She handed the teacher a card she had made and entered the room all smiles.

I watched the door close and then proceeded to pop outside every few minutes to peak thru the blinds to see how Lisa was doing...yes, I'm THAT parent. It was a wonderful moment and my heart was warmed by joy. I kept whispering to myself, "she's doing it, she's doing it". I know to most mothers of a 6 year old this may not seem like such a huge accomplishment. Butttttt.....I found myself thinking back to the dance classes Lisa took when she was a toddler. She was always developmentally behind the other kids. She couldn't balance, couldn't climb, couldn't hang, couldn't walk on tiptoe....she would make an attempt, but mostly just walked thru the steps while the other kids jumped, twirled, and spun around. So, to stand there and look through the window and see her point her foot, her raise on her tiptoes, twirl, do what everyone else was doing....it was wonderful.

This dancing ballerina may not have picture perfect moves, but she does have picture perfect spirit. This is the child that two months ago had so much pain she couldn't put pressure on her feet or wash her hands, this is a child who has scans lighting up all over with cancer, this is a child who is frequently taking pain pills for the aches in her legs and back. All these things going on, and yet there she stood proud, smiling, happy to be a ballerina. It was awesome!

Unfortunately, Maranda did not have the same awesome experience. When we arrived for her class, we found out that she was the only one who had signed up so unless they got more students they would be cancelling the course;( She's managed to arrange for her cousins to sign up for the class so hopefully next week she too can start dancing.

Until then, here's a little clip of the ballerina!

2011-01-21T00:07:00.000-05:00

Lisa is doing very well. She enjoyed MLK day off and the extra snow day our schools had. We started her nausea pills last week with chemo and she has had no "upsets". She is starting to complain about pain more and is taking those pills more frequently. Most of her complaints are about her legs and back. She is a very wise soul and seems to know when she needs to rest and when she needs to play. Often she'll disappear up into our bedroom and make herself cozy watching tv until she catches her second wind.

I feel like I'm holding my breath and constantly saying prayers. I'm still in denial regarding the severity of her scans. I'm hoping her cancer has not built up a tolerance for the chemo drugs and that the next set of scans show that the chemo is doing its thing. We are basically on a 3 wk rotation...chemo is week one, there is 2 weeks off and then chemo again. Lisa will do the next round of chemo the first week of Feb and scans will be done the week of Feb 14. For now, I'm trying to stay focused on how damn happy she is and follow suit. We are all keeping busy and trying to "live" our lives and not let cancer take the lead role.

Please offer up some extra prayers for Maranda. While the follow-up appts from her surgery have gone well, they've not involved much more than the ortho doctor talking to her and looking her over. In the past two months, Maranda has been having a lot of neck discomfort so she has to have a MRI done this Saturday and then follow-up with the neurosurgeon to make sure their are not other issues. Fingers,arms, legs and toes are crossed!!!!!

Thomas and Chrissy manage to hang on and not get lost in the shuffle of craziness. Chrissy is actually off at 6th grade camp and returning tomorrow. All the kids are counting the days until next weekend when they will all go to the Special Days Winter Camp. It's for kids who have cancer or are sibs of someone with cancer. This will be their second winter camp and hopefully Lisa's health will hold and she to will attend.

I'll end this post by sharing one of Lisa's "wise" statements. The other day at dinner, we were discussing the amount of calories in bread and butter. I was explaining to Tom that I needed to be careful how much bread I ate because of the calories, but that he did not have be as careful because he is underweight, more active, and growing....all of which means he burns more calories. I went onto explain that because I weigh more than I should for my height, I need to be more careful about what I eat and make sure I exercise. Lisa came up with another, much easier solution....she chimed in "you just need to grow taller!"

As always keep praying and keep living!

So how does Lisa do what she does?!

2011-01-13T19:51:00.000-05:00

She has a tea party, with her nurses, during chemo with the tea set we made the other day during treatment!

Now that's making lemonade, uh, I mean tea, out of lemons!

3rd day of chemo

2011-01-12T15:19:00.000-05:00

We are in our third day of chemo and Lisa, as usual, is holding strong. She seems a little more tired and short on patience, but who wouldn't? Lord knows I'm tuckered out.

I want to thank all of you who are reading for all your kind thoughts and prayers. A special shout out to Lisa G, Bill and Sue who joined Mike and I for drinks on Monday and let us ignore reality and just hang out. It is all of you readers and supporters (and drinkers) that help get us thru. I read every single response, post and email Tuesday morning. I took as much strength as I could from your comments and prayers and used those, denial, and the mundane task of cleaning house to get thru yesterday. Thank you, thank you, thank you to all of you who continue to read and provide support....YOU are how I get thru, YOU are how I know I'm not alone, YOU are how I know if I crumble, someone will be there to glue, tape, stick back the pieces and help me take the next steps.

People often say that they don't know how we do what we do. Well, the truth is, you do. Whether it's cancer, teenagers, losing a job, in-laws, annoying neighbors, whatever the cross is, you do what you have to do. Simple as that. We take it one day at a time; babysteps; one foot in front of the other... that's what gets us thru, that's how YOU would do what we do. Really what choice is there?

So, right now what am I'm doing? I'm drawing on every single comment for strength, trying to believe in prayer, and looking to find myself in all of this mess. I'm hoping that Lisa continues to be able to fight and am trying to hold the rest of the family together before we spontaneously combust. Because while all the focus is on Lisa, I can't help but wonder the impact this is having on Mike and my long-term health and on Maranda, Thomas and Christina's emotional health. Lisa has needed and gotten the most attention, while the others, for 3 yrs, have been short-changed. Obviously, it's understandable and for good reason, but the truth is this cannot be easy on 3 developing teenagers. It seems like as much as Mike and I try to dig out, we are only going to get deeper in the hole for a while and face a lot of cleanup. It is overwhelming and that is where I jump back to babysteps...doing a little bit each day and trying to find good in each day and hope for the future.

Again, all I can do is take small steps and try to make lemonade out of lemons. The best way I personally do this is to avoid staying at home idle why Lisa is living life and going to school. So, on that note, I'm trying to cross off a few things on my bucket list. One, I'm setting out to start an organizing business. I've always wanted to be a professional organizer and with my mornings free and my mind full, this seems like a good way to divert my attentions and help others while bringing in a little income. Two, I am looking for someone to help me find out if I should pursue the idea of getting the blog published as a book...something numerous people have told me to do. Third, I'm looking into forming a neuroblastoma support group and possibly doing another fundraiser.

I know lofty ambitions given what we are going thru. But honestly, I need other things to focus on or I will shrivel up into a ball and may never resurface. Feeling sorry for myself, asking "what if", and searching for cures and treatments that don't exist is just non-productive, depressing and makes me want to throw in the towel.

So, hence the bucket list. If you know of anyone that needs help getting their house in order or letting go of clutter, anyone who is knowledgeable about getting published, anyone who is interested in fundraising or who knows someone with neuroblastoma send them my way! I can use all the help I can get in achieving my bucket list and staying positive.

Thanks for reading, praying and sending support. Keep up the good work, we truly appreciate it!!!

deny--deny--deny

2011-01-10T18:33:00.001-05:00

that is all my brain is saying right now....scans were lit up, a lot, not good....doctor and nurse seemed pretty somber delivering news to me....might have been my perspective...i heard the words but have not processed nor accepted them yet.....

lisa started round of chemo today and will do chemo every three weeks until????????????????

i'll be at Chilis on ford rd in canton at 8:30 tonight with Mike for a BIGGGGGGGG drink....call either of our cells if you would like to join us....misery enjoys company and may need a ride home;(

Chemo Week - 01/10/11

2011-01-10T08:49:00.003-05:00

Mike here again -
After last weeks scans, Lisa's doctor called and wanted her in for chemo this week rather than next. We're not sure exactly how to interpret that yet but there are a few theories.

1) The scans might show the disease progressing and she needs chemo sooner than later.
2) There's a chance of her getting into a study in a couple weeks and she needs to be a couple weeks out from chemo to be eligible.
3) Pfizer is running a special on cisplatin and vincristine this week.

Ok that last one just came to me. Thank God I still have my sense of humor. [Regardless of how twisted] I'm hoping it's #2. We'll know later today.

Lisa continues to be energetic and active so your prayers, energy, and mojo continue to do their magic. Thank you!

Scans This Week

2011-01-06T10:39:00.005-05:00

Mike here on the blog today:
Lisa is getting a routine set of CT and MIBG scans this week along with blood work. Today being the last day. Send her your best. By all outward appearances she's been feeling good lately. Since her first trip to St. Jude she seems to be feeling better and better all the time. At least to me she does. Christmas and New Years flew by, didn't it. It was great to be home with all of the kids and having a great time. I hope yours was as blessed as ours was.

The picture I've included is a snapshot of her at Christmas with a carboard Cinderella that she received.

Winter Fun

2010-12-29T23:25:00.000-05:00

I'm definitely not one who enjoys winter. I begin counting the days until Spring right after our first snow (80 days to go!). But today....today, I really enjoyed our Michigan winter. We are out at the lake house. I arrived yesterday and marveled at how much brighter and upbeat it felt here vs "back home" a whole 25 minutes away. The difference I think comes from all the natural light streaming through the windows, the bright sun reflecting off the snow, AND people outside having fun!

Most of the time in Canton "suburbia world" I find myself hunkering down and staying inside. It's not very bright and the only people I see outside are the occasional dog walker and drivers of cars slipping and sloshing down the street. Here, even when I'm inside, I feel energized looking out and people watching.

Surprisingly, it was Maranda who was asking to come out to the lake house during Christmas break. The kids really enjoy it! Even though it's cold, they bundle up and spend the day ice skating on the lake, watching the ice fisherman, and people 4 wheeling across the ice.

I spent most of today cleaning the kitchen, and enjoying the fantastic view. It was great to see the kids spend HOURS outside today! At about 4:00 Mike and I were able to join them. We laced up the skates and got out in the fresh air. It was so much fun!!! Lisa doesn't ice skate yet, but she has fun pulling us around being the train leader! Mike and Maranda practiced their "figure" skating.

We'll be on the ice tomorrow, If anyone wants to come out and join us, grab your skates and hot chocolate and give us a call!

For all of you who have been praying for our friend Bridget...thank you, thank you, thank you. The prayers are helping. She is 10 years old and has been stumping doctors for almost 2 years. Her cancer is in the brain and there is no real name for what it is or how to treat it. Neurosurgeons have expressed dismay in the past seeing Bridget walking and talking when everything on her scans have led them to believe she would be bedridden and not functioning. Her doctors have even pointed to heaven as the only way to explain how she continues to improve. Her mom posted today: "Bridget spent the night in the step-down ICU and will be fully released from the ICU and moved into a regular hospital room this afternoon.....Bridget's cancer remains an enigma, with little/no case history to guide the doctors on how to best treat it. Plus, it's quite advanced, so it's impossible to project how this will all play out. We remain confident and trusting in God's plan for this little girl, and continue praying that God show us the decisions to make at each step along the way."

Please continue to pray for Lisa, her cancer buddies, and all the other cancer warriors!

Have a great day and remember only 80 days until spring!

Make that two teeth!

2010-12-26T21:30:00.000-05:00

Last night after I posted and Lisa had gone to bed, both she and Maranda reappeared giggling. Apparently Lisa decided one tooth was not enough to give to the tooth fairy and she worked and wiggled a second tooth out. She went to bed satisfied that the tooth fairy would be very pleased with getting two teeth at one house.

Today we got together with Mike's siblings and Mom to celebrate Christmas. Lisa was all smiles even with her gaping hole!

Hope everyone is enjoying their holidays. I feel so blessed to have my children all here and healthy at home with us. Please send up a prayer for our friend Bridgette who has been in the hospital since 12/20. She is fighting to hang on and she and her family celebrated Christmas together around her bed in the ICU. She too is a cancer warrior who also needs a miracle.

Keep praying, keep hoping!

Tooth Fairy coming tonight

2010-12-25T19:45:00.000-05:00

Lisa manages to keep the excitement going. She pulled out a tooth today. Looks like the tooth fairy has to come tonight....good thing she didn't have to make the flight last night, I'm pretty sure she was helping out Santa!

As I'm typing this, Lisa just asked "What holiday comes next?" She's ready!

Happy Holidays!

One more day until Christmas!!!

2010-12-24T15:14:00.000-05:00

I'm sure it comes as no surprise to anyone that Lisa and the rest of the kids are completely ready for Christmas and me, not so much! Are you sure it's tommorrow? I need about two more weeks. I cannot tell you where the time has gone or what I've been doing, but it is going to pass me by before I'm ready. Hopefully all my friends and family whom I normally send Christmas cards to are reading the blog, cause I don't think I'm going to get Christmas cards out this year! We did get some things accomplished in the past few weeks...mostly at Lisa's insistence!

We saw Santa at the Mall

We made cookies...to see who was really behind the cookie making, click this link to see the video.

Lisa picked out Christmas Gifts

We went to the McMaster Family Party

The tree got decorated (thanks to Lisa, Chrissy and Thomas)

Presents were wrapped

And now, we run around doing last minute things as the minutes count down. We got church and the Yesh party tonight. Merry Christmas!!

Christmas is coming

2010-12-13T00:10:00.000-05:00

Lisa has been doing very well. She only got sick after chemo one time this week. We are still working on her appetite; she lost another pound this week. Hopefully with all the holiday fun and festivities coming up we can get her eating and over-indulging like the rest of us!

We spent close to two hours in the car to go to the Kids Kicking Cancer Christmas party. Santa, Rudolph, Mickey and Minnie were there. The kids enjoyed food, dancing, arts and crafts. Every family got a big family bag of gifts. Lisa enjoyed herself and everyone had a good time despite the long drive and snowy roads.

I cannot believe it's 2 weeks to Christmas. The only person I've bought gifts for is Maranda and that's because she is a shopaholic and constantly picking things out for me to pay for which I put into a "presents" pile at home. Lisa is actually a little tough to buy for....she has almost every baby imaginable and with three older kids, we are well-stocked on pet shop, polly pocket, barbies, craft kits and almost every board game. Ugh....what to buy, what to buy!?

If all continues to go well, Lisa will only have blood draws one day a week for the rest of December. Scans are scheduled for January and if no study opens, she will have another round of chemo. We count our blessings and are so glad that Lisa will get to spend another Christmas at home.

Please offer up prayers for some of our Mott's buddies (Bridgette, Cody and JD) who have been in the hospital and hoping to be home for Christmas!

Chemo Day 3....Lisa's hanging in

2010-12-08T23:26:00.000-05:00

It's only Wed and it feels like the longest week ever. Lisa started her chemo this week. She goes to school in the morning, comes home, eats a quick lunch and then we go to the hospital.

Monday, Lisa was grumpy, but she handled the chemo well. Tuesday she was on her chemo high, in great spirits and practically skipped into school. She was in great spirits when we went to the hospital, but the chemo yesterday afternoon knocked her for a loop and she got sick last night. Her appetite was shot and she didn't eat much for most of the day today. She handled today's chemo better (we made sure to give her double doses of nausea medicine) and with frequent rest breaks and naps she had a bit of an appetite tonight at dinner.

Two more days of chemo and then we will just do lab draws until January. We'll have scans done in January and hopefully a study will open up that Lisa qualifies for...otherwise we will continue with chemo.

She's a trooper; keep praying that God continues to give all of us strength.

Round of Chemo coming up

2010-12-05T23:57:00.000-05:00

We had a good weekend. Got the Christmas tree and decorations up. Lisa has been feeling very well and we are hoping that she handles the chemo well. Have to take a look back at the notes and refresh our memories to try and remember how she reacted to these drugs. It's been almost 7 mos since she had any chemo drugs and while we should know the drill it's still a bit nerve racking. Hopefully this week will go by quickly, she will continue to feel well, and new options will become available to help keep the cancer at bay.

Keep praying!

Happy Belated Thanksgiving

2010-11-29T22:53:00.000-05:00

Sorry for the lack of updates!. Many people have told me that when we don't update the blog they know everything in fine, because no news is good news. While that is normally the case, I feel a but guilty that the blog has become something of bad news tabloid instead of a sharing of ALL our experiences. As tough as these last 2.5 years have been, there have been some great times, as well as, "normal" times that balance out the bad. I hope to share more of the great with everyone so that a sense of dread does not overwhelm everyone anytime an update goes out!

So, here's some great and normal news. We had a wonderful Thanksgiving. It was nothing out of the ordinary, it was one spent with family instead of in a hospital room. We were doubly blessed because we got to do one Thanksgiving dinner with my family on Thanksgiving day and another Thanksgiving dinner with Mike's family on Saturday. We really enjoyed spending time with both sides of the family.

Mike's family was surprised when his brother Brian appeared in the house unannounced. He and his family had traveled from Alabama this year to be be with everyone. All the kids were thrilled, they have missed their cousins quite a bit. It is so wonderful to see this next generation come together, hang out, go swimming, watch movies, play games, even though their ages span from 10-16. It's also amazing to see how how these "kids" are growing up into "people" who you can actually converse with and share jokes, memories and stories with.

Thanksgiving is a time where we can really take a look and count our blessings. I sometimes struggle with this, but this year I was able to come up with a few things. I am blessed:
-To have a wonderful husband and 4 beautiful, funny, intelligent children
-To have both my parents and my mother-in-law with us and in good health
-To have so many people who love and support me
-To have my own health
-To have a safe, comfortable place to call home
-To have a chance to make a difference with my life

I'm sure I could come up with more, but those are the ones that came to me immediately.

By Wednesday of this week, we will have a better idea of what next steps will be for Lisa. As of today, the doctor thinks we may have her do a "maintenance" chemo next week until we can find a study to put her on.

As always, keep praying, count your blessings and know how loved you are!

The options

2010-11-21T01:13:00.000-05:00

Sorry to keep everyone waiting for news after our doctor appt this week. I was at the hospital both Thursday and Friday for quite a while visiting/helping two different friends whose children were in for care. It was kind of nice being able to focus on someone else's problems for a bit.

On Wednesday, the doctor listed out seven options for us. None of them are a "cure". They are all "trial" drugs/therapies. They are still in test phase to determine how they impact neuroblastoma cells...do they slow the growth, stop the growth or do nothing....all of the options are things to "try" vs doing nothing at all.

The number one option---Senecca Valley Virus--seemed like the way to go and we were told there would be a trial opening in two weeks. Unfortunately, because Lisa is not toilet trained at night and has been having incontinence issues since the antibody therapy she is not eligible for this study. Crazy...who would think our decision to focus on fighting cancer instead of toilet training at night would bite us in the butt!!It was pretty disappointing to hear that she couldn't participate in this study. We've heard good things about it and we want to try everything and anything to beat this miserable disease.

The next option--ALK inhibitor---is most likely the one we will try next. Again, the success of this therapy is limited and not known to cure but hopefully could slow the cancer down until a cure is found. The waiting for a spot to open is nerve wracking because of the waiting, we don't want to give the cancer a chance to take over.

Lisa so far, looks great and seems to recover more and more each day from the antibody effects. I continue to reach out to some of the neuroblastoma support groups and doctors to see if there is anything else we might be doing. We are in good hands at U of M and we are very happy with our care. We continue to read and be on the lookout everyday for the miracle, the thing that will make this cancer a thing of the past. And of course, we continue to pray!

Bittersweet News

2010-11-14T00:36:00.000-05:00

We are home! We flew home yesterday with Lisa looking good and feeling good....that is the good news. We came home early because Lisa is not responding to the treatment...her cancer has grown...that is the bad news.

While this was one of the most enjoyable times we had at St Judes with lots of activities to particpate in, our visit was short because of Lisa's scan results. Scans this month compared to last month show multiple spots in both her right and left leg and parts of her groin area. This is not news we wanted to hear. When the doctor told me, I basically put up my "wall", shut off my feelings, and proceeded to book a flight home. It's still too fresh and painful to talk or think about so I'm basically in the "feel nothing, think nothing and pretend none of this is happening mode". Mike and I will be meeting with our U of M docs soon to determine next steps; options are few and very limited.

Lisa knows her cancer is "winning" but is glad to be home and willing and able to fight back. There is still room for miracles. As we rev up for the holiday seasons the one word that is constant in my mind is Believe. Believe, Believe, Believe.
Please keep praying....and keep Lisa on the prayers lists...she (and all the other little cancer warriors) need a miracle.

Lisa turned Matt Lauer into a frog

2010-11-11T08:00:00.000-05:00

Today was the big pajama party at St Jude. The one that the Today show and Marla Thomas were supposedly filming for viewing over the Thanksgiving week. While most of the day things were pretty quiet, Lisa and I did run into a camera crew who was touring the building after one of her appointments. Lisa had just received a "magic" wand as her prize for doing a good job and as we were cruising by the camera crew she said "abracadabra..I turn you into a frog" and pointed the wand at the last guy. The rest of the crew all laughed and smiled and pointed at their buddy. Lisa and I proceeded to the cafeteria and I told her she really should have turned the guy back to a human because he was there working and she couldn't just turn everyone she saw into a frog. She agreed to limit the use of her power.

As we circled the hospital again a while later, we ran into the same crew again and the "frog guy" ribbited at us. Lisa graciously turned him back into a man. The crew laughed and as we reached the end of the hall, there was Matt Lauer all by himself waiting for the crew. I knew they were busy and didn't want to interrupt him so I wheeled Lisa on by. We got a few steps past and I stopped and told Lisa "If there's anyone you should turn into a frog, it's that man." Lisa twirled her wand, said the magic words and turned Matt Lauer into a frog. He saw her do it and came over to ask what she said and than begged her to please not turn him into a frog...she quickly turned him back into a man. He asked her name, shook her hand and told her it was nice to meet her. As he walked away, it occurred to me that I'd just missed a Kodak moment. I figured we would catch him later at the pajama party.

A short time later we passed Marlo Thomas in the hall. I walked right by her as she blended right in with all the other business women standing around her, but then I heard her voice and realized I could have reached out and touched her. Once again, I opted not to disturb her and wait for the Kodak moment later at the pajama party.

Unfortunately, the Kodak moment never came. While Lisa was in her last appointment for the day, they kicked off the pj party and Marlo and Matt made their appearances in their pjs and then they were gone. While I was disappointed, Lisa was quite satisfied with the dancing, arts and crafts, and cookies that were offered.

Lisa and her St Jude Child Life Specialist at PJ party

It was a really fun time and we followed it up with a BINGO game at our hotel where Lisa won numerous prizes leaving me wondering how the heck we would get everything home.

It really has been a fun week, one that has been full of activities that have made the days special. It really showcased what St. Jude is famous for...being the number one pediatric cancer hospital in the world. A place that is seeking cures to assure, as Danny Thomas' said, that “no child should die in the dawn of life”; a place that is making sure that these little cancer warriors are blessed with special moments as they fight for their lives.

Time Flies and so do we!

2010-11-09T20:13:00.000-05:00

Not sure how it happened but the two weeks we were home flew by (sorry for so few posts) and we are back at St Jude. We got in last night and started appointments this afternoon. Lisa and I are both exhausted and I"m not sure why...the time change in MI and the time difference here should put us right back on track, but for some reason we are out of whack.

Both Lisa and I are cranky and very reluctant to be here. Last night when we checked into our room, Lisa took one look and said she wanted a different one; apparently now that we are frequent visitors to St Jude we've been down-graded to the regular room instead of the suite. When I asked why, I was told the suites are only for the new patients. Wow, talk about bait and switch...it's like they are trying to impress you the first time you're here, but after they got you, they know they'll keep you coming back. I would have rather just had the regular room to start with so I wouldn't know what I was missing! I rearranged the room a bit so Lisa could have a place to play and we've settled in.

We were able to participate in a fun activity today. The National Auctioneers Association (NAA)was here today and took some time to teach the kids some tricks of the trade and then they had an auction with toys for the kids to bid. The NAA provided all the toys and gave each child an auction paddle that they used to do their bidding (no money was involved just lots of paddle waving and fast talking). All the child had to do was wave his paddle when they saw the toy they wanted. I'm sure you all know what Lisa set her eyes on...yes, a baby doll...the only one at Target we don't have...the one that goes in the bath. It was very fun and she was a happy girl.

Rumour has it that Thursday night there will be a pajama party in the cafeteria and that Marlo Thomas and the Today show may be present. While I'm excited about the possibility of meeting "that girl!" I'm not excited about the hubbabaloo that comes with the tv crews and possible filming. Oh well, that's the price we pay for being at such a famous hospital!

Hanging in there

2010-10-29T00:18:00.000-04:00

Lisa has been doing remarkably well this week. She has been to school every day. Docs assume she may be doing so much better this time because her body is getting used to antibody...I think it's the painkillers.

We left the hospital after the first antibody treatment with no pain control. This time we were wise....she takes pain meds every 4-6 hours and we are able to keep her comfortable and functioning.

I just finished reading my emails and realized we are already due back to St Jude the week after next...man, time flies.

A new week...at home;)

2010-10-25T00:11:00.000-04:00

Yeah...we are home, again. We got home Friday at around 5:30 and then proceeded to go North to visit Mike's mom. Lisa was so excited about seeing Grandma Mac. We had a nice time just hanging out and Lisa's pain seems to be less this second round of antibody. She is only taking pain killers 2-3x's a day and is up and about and playing...yeah!
She'll have appts at U of M twice a week until we go back down to St Jude's. If her scans continue to show her disease is stable she will be eligible for two more rounds of antibody. No real way of knowing if this treatment is working or how much time we are buying her, but if she is able to bounce back and not continue to have pain, we are willing to continue the treatment.

Lisa has looked so good the last two days that the plan is to send her to school tomorrow. Of course, when she heard this, she said she couldn't go because it would hurt her neck! They learn fast, don't they!

Glad to be home!!

Course 2, Day 4 much smoother....and this course is complete

2010-10-20T14:30:00.000-04:00

Course 2 Day 4 went very smoothly. Lisa was very restful and calm when it was started. Have no idea if it was from all the meds in her system the day before, because it was later in the day when we started, if it was the change in pain killer or skipping the premed antivan, but I was very happy that she was feeling little pain. We sailed past the 15 minute and 30 minute marks with no problems and at the two hour mark she asked to do a craft. What an incredible change from one day to the next. She breezed thru all four hours getting pain meds when needed and sleeping on and off. It would be nice to know what the magic formula is but it continues to change which each dose which is what makes this so hard to do.

Lisa just stared at me as I did the "we made it past 2 hours happy dance"

Last night went pretty smoothly and we were able to keep her pain under control. She did throw up once, but after that was fine. She slept pretty well and did not even wake to the crazy fire alarm that went off at 6:30 am for a drill. The staff is soooooooo lucky they were all behind the fire safe doors and I was exhausted because I'm not quite sure what I would have done to someone if I had got my hands on them;)

We are waiting to be released from inpatient. For some unknown reason, Lisa's platelets fell and she needs to have a transfusion before they will sign us out. From here it's back to the Grizzly house for the night, a day of rest tomorrow and then labs on Friday. If everything goes well we will hopefully be flying out Friday.....keeping fingers, legs, toes and eyes crossed that we can get out on Friday and don't have to wait for a flight on Saturday.

Next steps will be to follow up with more labs on Monday with docs at home and determine if we will be doing this again for course 3 in a few weeks.

Course 2, day 3---long day...should we continue

2010-10-18T23:53:00.000-04:00

Lisa's various reactions to the meds and the treatment she is receiving kept me up last night as I researched and questioned whether we are doing the right thing. She is in so much discomfort and basically living her days in a sedated world that I'm having a hard time reconciling this with giving her a good quality of life. I had made up my mind to ask doc today if they could cut antibody dose back this morning because perhaps it is just too toxic for Lisa.

Why I toyed with how to phrase the question, one of the docs came in this morning a proposed a more structured way to administer the pain drugs with the hope of keeping Lisa more comfortable thru the day. I agreed as my mind did the tug of war of the benefits of continuing vs giving up. If we can control her pain then giving her the antibody makes sense because it could give her a longer life, on the flip side, her quality of life is being compromised and so far she has already given up 6 weeks of life to this study. Also, the effectiveness of the antibody is not known yet.  I have gotten different statistics from different people re: how much time this buys kids. One person reported his daughter did well with this antibody over one year ago, another person reported that she knew that 6 of the first 12 patients in this study passed away within 18 mos of completing it.

I agreed with the doctor to continue and give it one more shot with the hopes Lisa would sail thru the day. In my mind I told myself I would not allow them to give her the antibody until she was not sedated and sleeping. We began premeds at 9:30. After giving her tylenol, 2 antihistamines, anti-anxiety and morphine, Lisa was still wide eyed and agitated. The nurse honored my decision not to continue with the antibody until we had Lisa sleeping. We gave her a second dose of morphine...still nothing...except she got a bit more agitated and insisted she wanted to get out of bed and eat. She tried getting out of bed but could barely stand up with all the meds in her...somehow she managed to grab her box of cocoa puffs from the table next to her bed and start eating. Really? The girl is supposed hopped up on pain meds and she wants to eat? After she finished with this distraction she kept asking for an owl I promised to get her from the gift shop once she went to sleep. She would close her eyes for 5 minutes and then open them and tell me she had gone to sleep and wanted her owl. We continued this game until about 1:00 when her regular doctor came to check on her. We discussed our options and she decided the next best thing to do would be to change Lisa's pain med, to see if we could get a better response than with the morphine. Lisa was highly agitated at this time and the doctor and I agreed that we before starting up again, we should take a little break and give the drugs a chance to wear off. I took Lisa her for a walk outside in her wheelchair and we went to the gift shop to get the owl. I was certain the fresh air and sunshine would knock her out. Hahahahahahahahahahahahahahaha. Oh, she closed her eyes once or twice, but this girl is stubborn. Even after she got the owl, she still wasn't going to sleep.

Once we returned to the room it was close to 2:00. Had I let them start the antibody on time today we would be finishing up at this point.   I wonder what I had gained with the approach I took....for all the agitation and frustration we went thru we could have just put her on the antibody and dealt with the same amount of screaming and been done with the treatment! How was I to know that Lisa was going to be so sleep resistant??

We had to start all the drugs over. We were certain with all the screaming she had done and another round of drugs, Lisa would just collapse in exhaustion. We got all the drugs going again and at 3:00 when we were ready to run the antibody, Lisa was still awake. Admitting defeat I told the nurse to just go ahead and run it, at this point could it get any worse?  Sooner or later Lisa would have to tire out, Lord knows I was exhausted. It took the drugs, a bit of force, and a bit of being the "No" mom repeating over and over again "No, you can't get out of bed" "No, you can't take your tubes out" "No, you can't go to McDonald", "No, you can't go for a walk" before Lisa finally fell asleep at 4:15. Her body was already so agitated and tired from the rest of the morning that when the antibody started running her stats barely changed and we didn't notice a big change in attitude, cause really how much more cranky can one get?

She slept until about 7:00, but every time a nurse came in to take her vitals she fussed and screamed. She has been resting most of the evening but is easily agitated. We have one more day to get her thru this course and then hopefully we will be cleared to come home this Friday. I hate wishing days to go by quickly especially knowing our days are numbered, but I honestly cannot wait for tomorrow night to be over.

I pray and pray that tomorrow will be an easy day and that once all the pain meds where off Lisa feels good and can go back to walking and eating and smiling and not have to rebuild up her strength like after course 1.

Long day...day 2, dose 2 of antibody HU14.18

2010-10-17T17:00:00.001-04:00

Unfortunately, today did not go well. Lisa had lots of pain. She was sedated, but not asleep when the antibody began to run at 9:30am. At the 15 minute mark she was restless and uncomfortable; and, once again, this pivotal time set the pace for the rest of the treatment. Her vitals went crazy and she started fussing. We got the oxygen going and she settled down a little bit but was obviously in pain. As the time ticked by, the pain got worse...at the one hour mark she was crazy with pain and they gave her a second dose of morphine. Hour two was filled with lots of screaming and tears and I tried to wrap my brain around how much pain she must be in that she was still bolting upright even after the second does of morphine had kicked in. Hour three was a bit better and she seemed to get a bit of rest in between her waves of pain. The fourth hour was excruciating to watch (and I'm sure to feel). Lisa was inconsolable and I was mentally sending up prayer after prayer to God and every saint I could think of and sending Mike a "get plane ticket, come now" thoughts. Towards the end of the fourth hour, the rash that appeared yesterday, reappeared with a vengeance. Instead of just dots, she also had the color pink traveling up her body; just looking at her made me itch. Poor thing; she was miserable as she scratched and cried. The doc on call prescribed Zantac (say what?! it's normally used for reflux but apparently has great antihistamine blockers....who knew?) and it helped calm the rash down, but not the pain. She continued to be in and out of pain for the next two hours even though the antibody had finished infusing. At about 3:15, she finally drifted off to sleep and continues to sleep almost two hours later. Thank God.

She has two more days of antibody for this round and if it's going to be like today, it will be very tough for us to get through. I can't imagine the strain this puts on the rest of her body...heart, lungs, etc. It's a very big shock to her system. I pray that the time we put into this is worth it and improves not only her quality of life, but her quantity.

Please continue to pray...the days are long when a child is in pain and you can do nothing to help them.

Power of Prayer

2010-10-16T18:08:00.000-04:00

It is nearly 6:00 here today and so far so good. Once the first hour was over, Lisa remained stable for the rest of the day. She gets pain meds every four hours and this seems to be keeping her comfortable. At 4:00, she sat up, asked for water, told me she felt fine and went back to sleep.

I pray and hope we continue on this peaceful path. She is a wonderful little girl and truly a fighter. I continue to cross fingers, toes and legs and pray constantly that the next few days and recovery at home go smoothly and her pain dissolves and her cancer retreats.

Thank you all for praying!

1 hour into second antibody course...things now peaceful

2010-10-16T12:15:00.000-04:00

Thanks to all of you out there throwing prayers our way. They are working. Lisa was infused at 10:06 this morning. She was doped up on morphine and ativan when it started running. At the 15 minute mark she started coughing, I noticed her face looked mottled and splotchy. I called for the nurse...the next 10 minutes raised by as her her heart rate jumped, her oxygen fell. She was hooked up to oxygen and things started to settle down. She "slept" thru it all. At the 1/2 hour mark she was still zoned on the drugs and her stats stabilized. At the one hour mark, she continues to "rest" and does not seem to be feeling discomfort...yeah!! I hope it continues to go this smoothly. Please, please, please God let her feel peaceful and pain free.

10:06 am...second antibody course started..please pray

2010-10-16T10:06:00.000-04:00

They just started infusing antibody...next 1/2 hour will be telling on how Lisa will handle this...please pray for strength and comfort

THIS is the St Jude everyone raves about

2010-10-15T22:00:00.000-04:00

All of Lisa's scans and test have come back showing her disease has not gotten worse which is great news. It also means we can continue with antibody round 2. Given all the pain Lisa was having, the doctor actually seemed a bit surprised that Lisa's disease remains stable; the last patient to go thru this dosage of antibody had progression of disease so he was dropped from study.

Lisa continues to have pain specifically in her hands an feet. Having an extra week has helped and she is doing better and even managed to be pleasant for a good part of the week, but the pain is still there. It is with much apprehension that we enter round two of this antibody. Neither the doctor nor the neurologist we saw for pain could say whether this next dose would be as bad as round 1 or if the nerves were already so frazzled that the pain would be less. They also could not guarantee that it would not cause long-term nerve damage. Based on prior patients, the doctor "thinks" that the symptoms should be less this time. Becasue Lisa has shown improvement this week, she also "thinks" that there won't be long-term nerve damage...but there are no guarantees.

Lisa is the first patient at this dose level to have the amount of pain she did for the length of time she did; because of this, six more slots will be added to study using this antibody level to document other patients' reactions.

So, after spending a week milling around Memphis, we were admitted as inpatients tonight in preparation for the antibody tomorrow morning. Finally, I have found the St Judes everyone raves about. We are in their new building and on the floor where bone marrow transplant is done. It is NICE. All the patient rooms are single rooms with their own bathrooms. They have the normal hospital bed, tv with dvd along with PLEASANT staff, big windows, a couch bed, lazy boy chair, built in cabinets and a door that leads right into a parents room. The parents room has its own couch bed (they offered to move a FULL size futon in if I chose), lazy boy chair, table, side table, built in closet, computer desk, tv with working remote and dvd player AND its own bathroom including shower. It's heaven! I know, easy to please! I really hope Motts new hospital includes these type of accomodations. You would think that they took the best of the best when building the new hospital and the features here at St Jude's building are very nice and make a hard situation much easier...THIS is the St Jude everyone raves about!

Please send up a few extra prayers the next few days that Lisa's pain in manageable and that she is able to stay strong and continue forward.

Fun in Memphis

2010-10-12T23:29:00.014-04:00

Well...thanks to Aunt Julie and cousins Mitch and Alyssa we survived the weekend and had LOTS of fun. Lisa did really well on Saturday and required no pain meds at all, she even ate 3 meals. Her cousins kept her busy and laughing and it was wonderful to see her feeling so well. The doctor had asked that I try to get her off the pain killers and this was a great first step.

Sunday she did pretty good, but started to fade towards the evening. That night she was pretty agitated and required pain meds twice. Monday she was a bit groggy and was doing fine until her physical therapy appt. She was not cooperative at all. We even tried to have Mitchell and Alyssa coerce her into participating, but it was a no go. Once the therapy session was over, Aunt Julie and the kids headed home and Lisa took her pain meds and slept for 4 hours. She was feeling better afterwards and we took a shuttle ride to Walgreens for some items.

Today, I caved and gave her her pain killer at 10:30 in the morning. She was miserable and after the one clinic told us we had to reschedule our appt because we signed in 10 mins. late (yah, like we don't sit around waiting on them all the time!) I couldn't take any more aggravation. I gave her the meds. They kicked in and she was FINALLY in good spirits and cooperative with the head doctor here. The doctor was so pleased she said that if Lisa looks this good on Thursday we will most likely go ahead with the antibody on Saturday. I made sure to tell her that it was drug induced happiness and she seemed to be okay with that. The thinking is that Lisa's nerves are already on alert so the second antibody shouldn't be as shocking to her system. There still is some concern about her bowels....even though she has been taking laxatives the last 4 days, nothing has "happened" down there since we got to St Jude over a week ago. So far she isn't having any symptoms, but they are still keep an eye out for a bowel obstruction.

Holding my breath and saying lots of prayers that this is all worth it and she will bounce back!

Here's a little video we put together of our adventures in Memphis this weekend.

St Jude...be here a little longer...possibly

2010-10-08T00:26:00.000-04:00

It's been a bit of a trying week. Lisa has been hit and miss with her moods, generally most of her meanness is directed at the doctor, poor woman. Lisa is really trying and even told of the few of the workers they are her friends which is wonderful to see, however, by the time she sees the doctor she's usually tired and uncooperative. Not sure why, but it could be the long wait for the doctor and the timing of the appt which is usually at the end of a pretty full day of tests.

I had a few anxious moments this week with test results, but so far everything has come back as stable disease. There was some concern about the cat scan because Lisa's bowel is dilated...surgeons were cconsulted and because she is asymptomatic, they feel that at this time there is nothing to be concerned about. They have given me a list of symptoms to look out for which would indicate that she has an obstruction in her bowel. Her MIBG scan showed something questionable on back part of her left leg, so they rescanned her legs today. Radiology doctor who read the scans concluded that it is not neuroblastoma again supporting the finding that she has stable disease.
Her doctor here is worried about her gait and difficulty walking. The doctor has scheduled an MRI of the spine and brain for next Wed. We are holding off on antibody until MRI is done and hoping that the extra time will get Lisa back to full strength and sleeping, walking and pain free before starting second round of antibody.

This means we get the weekend off from appts, but we will still be here at St Jude. Thankfully, my sister-in-law Julie, who lives in Alabama, had already planned to come visit with her kids and keep us company for a few days. While they won't be able to help us in ICU, they should be the perfect antidote for Lisa's aches and pains and hopefully get her feeling better. She is so excited to see her cousins Mitchell and Alyssa. We're hoping to finally make it to the zoo! Although with it still being in the 90s, I'm not sure what animals will be out.

If MRI does not show anything concerning and we proceed with the next round of antibody we will be tacking on some extra days to our visit here. Original return date was Oct 15...if we do the study, we most likely won't be returning home until. after Oct 19.

On another note, we would like to thank everyone who participated in the auction for the Michigan vs Michigan state tickets. The winner of the auction was Ryan Tobin with a final bid of $310. The money has been given to C.S. Mott Children’s Hospital/University of Michigan. Congratulations Ryan...you better be cheering for the Wolverines!!! GO BLUE!

Back at St Jude

2010-10-05T23:52:00.000-04:00

Well, we flew back to Memphis today. Things went off without a hitch until we tried checking into the Grizzly Hotel at St Jude. They were overbooked so they sent us off campus to the Crowne Plaza. It's still all paid for by St Jude and they provide a shuttle, it's just very inconvenient getting back and forth, it's not very kid friendly, the beds are lumpy, the room not so clean, it's noisy and you it smells a bit funny (could be the exhaust from the freeway). But we'll make do.

We also had some difficulty getting a prescription filled which kept us hanging around campus for an extra hour. Waiting in the pharmacy we met another family whose little boy is in remission from neuroblastoma. He's younger than Lisa and was eligible to receive both MIBG and antibody treatment as part of his initial protocol. The mother did say he had some residual pain from his antibody treatment, but nothing as long as what Lisa has experienced. We have scans tomorrow and Thursday and don't meet with the doctor until Friday; it will be interesting to hear what she has to say about Lisa's pain.

Surprisingly, once we got to the hospital, Lisa perked up. She was actually "hopping" on some circles and counting them while we waited for the prescription. Not sure if it was the visit from Grandma this afternoon, the hospital air, or all the prayers being offered up but it was a wonderful change of pace and we had a very enjoyable evening which we finished up with eating pizza in bed!

Keep praying, keep hoping, keep believing!

Online Auction---Bid on Michigan vs Michigan State tickets

2010-10-01T23:25:00.000-04:00

Lisa continues to be the trooper. She went to school today and went home with Ms. Lisa after...as usual, she ate a big lunch with her buddy (Ms. Lisa must have a secret recipe for mac and cheese!) and they played and enjoyed each other's company. She still is taking pretty long naps in the afternoon and is frequently experiencing pain in her legs and hands. Her doctors at Motts are pretty convinced it is from nerve pain which is a side-effect of the antibody she received. She is scheduled for scans starting Wed at St Jude and these should let us know if the cancer is stable or growing. We are giving her pain meds on a regular schedule to make her more comfortable and help her sleep thru the night.

In our efforts to do something we have control over, something positive, we are having an online auction!!! Up for bid are 2 Tickets in Section 37, Row 75, Seats 1 & 2 to the BIG GAME in Ann Arbor, MI on October 9, 2010 between University of Michigan Wolverines and Michigan State Spartans. These are GREAT seats in the end-zone. Included in the auction is an autographed football signed by University of Michigan football stars Brian Griese, Charles Woodson and Steve Hutchinson.

To bid, click here. (You will need to login with your facebook account or setup a free GiftBerry account to take part in the auction.). The highest bid wins and the funds will be donated to C.S. Mott Children's Hospital for research relating to neuroblastoma, a pediatric cancer of the central nervous system.

Be sure to pass on the link for the auction to any family or friends you think may be interested.

Thanks!

Perhaps a Sign

2010-09-30T00:24:00.000-04:00

This was on the CBS Evening News tonight....it's the same antibody Lisa is getting, they appear to have a few other drugs mixed in and are using it for newly diagnosed neuroblastoma patients.

Treating Neuroblastoma - CBS.com

You can read a similar article at http://www.sys-con.com/node/1552341 Perhaps this is a sign from God I've been looking for that we should continue with this treatment...good timing don't ya think!

Lisa had her official first whole day of school today...she made it for the entire 4.5 hours of kindergarten. We did set up a little rest area with a bean bag chair, blanket and mp3 player. The teacher said Lisa went there once, rested for a little while and then popped back up and went to the math table. When they went out for recess, the teacher asked her if she wanted to sit and play with sidewalk chalk. Lisa said no and with her gimpy little gait headed off towards the playground structure!! You go girl!