Miracle, one little bit at a time

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

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

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

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

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

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

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!