Friday, December 16, 2011

Lisa's Home

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

Santa is watching

Tuesday, December 13, 2011

The Hospital Is New, But The Routine Is Familiar

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

Friday, December 9, 2011

A Day Like Any Other



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

Monday, December 5, 2011

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!

Thursday, November 24, 2011

HAPPY THANKSGIVING

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!

Saturday, November 5, 2011

Radiation is complete!




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!

Monday, October 31, 2011

Happy Halloween

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:)

Wednesday, October 26, 2011

Loving Life

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

Saturday, October 22, 2011

She is home!!

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!

Friday, October 21, 2011

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




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:)

Wednesday, October 19, 2011

Safe and Sound---Yeah!

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

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?

Tuesday, October 18, 2011

To do or not to do--brain surgery

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

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!

Monday, October 17, 2011

Better but not Great

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.

Saturday, October 15, 2011

Lisa's Back Home



video

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!

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!

Thursday, October 13, 2011

Another night at Motts

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!

Wednesday, October 12, 2011

Lisa was admitted to hospital tonight

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!

Sunday, October 9, 2011

Lisa is home..thanks for all the prayers

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

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!

Monday, October 3, 2011

It never gets easier

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!

Monday, September 26, 2011

Scan Week this week


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!

Thursday, September 15, 2011

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

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!

Monday, September 12, 2011

Happy 14th Birthday to Maranda!

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!

Wednesday, September 7, 2011

Birthday - Continued


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

Friday, September 2, 2011

Happy Birthday!

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!

Monday, August 29, 2011

Get your GOLD on!

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.



Friday, August 26, 2011

We returned home on Wednesday



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!

Wednesday, August 17, 2011

Cancer does not take a vacation

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!

Tuesday, August 9, 2011

Scan week this week

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!

Wednesday, August 3, 2011

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'!

Tuesday, July 12, 2011

Things are going well

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!!

Thursday, June 30, 2011

arghhhhhhh.....

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.


Tuesday, June 14, 2011

BLAST...still waiting for final results

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/