1/27/2010

Monday was Nicole's birthday and it was great having everyone together at home.  Lacking the ability to really go anywhere, we had a great time sticking around the house. Claire and Matthew decorated the house (and each other) with streamers and Claire made a delicious chocolate cake.

On Sunday, Claire and I joined Claire's friends Elise and Julia and their dad's, Adam and Brian, and went to a local performance of Willy Wonka and the Chocolate Factory.  For being a long show, the girls did great (the dad's survived with only minor injuries) and everyone had a great time.  Below is a collage I put together using the extent of my collage creating abilities (Picasa3).

Matthew is off to his regularly scheduled appointment at the CMH clinic this morning where he will get his blood tested.  If his counts are high enough, they may even keep him to start his next round although we don't expect that to be the case. (updated 6:54 pm.  Matthew is home.  Will probably return for his next round next Monday or Wednesday)

Heading home!

Still has the flu and is on the meds but duder is doing great and is getting released today.  It means having to wear pants (and a shirt for that matter) but its a small price to pay for the opportunity to go home and bodyslam his big sister, Claire.

and we're back.

Matthew was re-admitted to Children's Memorial Hospital last night with a 102 fever and a positive flu test.  Started Theraflu this afternoon.   Below are a few photos of Claire and Matthew jumping in their blow up jumping thing.

Thank you...continued

How far that little candle throws his beams!  So shines a good deed in a weary world.
                  ~ William Shakespeare and then later perhaps by Willy Wonka

Nicole and I wanted to continue to thank everyone for their gifts which have taken on many forms.  Whether it be cooking, cleaning, or caring, the thoughtfulness of our friends and family has been overwhelming and greatly appreciated.  Thank you.    

1/13/10

Matthew received some very good news yesterday that the diseased chromosomes causing the leukemia were gone.  The leukemia cells that remain are likely remains from before the chemotherapy and evidence indicates that no new leukemia cells are being created.  This is awesome news and further indication that the treatment is working.  The plan remains the same to finish this round of chemo and then have 1 more round, followed by either a bone marrow transplant or 2 additional rounds. Matthew is scheduled to go home tomorrow and cannot wait to see his big sister, Claire. 

As good as this news is, we are even more saddened to learn that one of Matthew's floor mates is losing his battle and likely will not make it through the night.  Nicole and I got to know his mom, as we have many of the other parents.  We are thinking of the little guy and his entire family tonight.

Bone marrow drive - February 14th and March 14th

As many of you know, Matthew may need a bone marrow transplant during the course of his treatment.  As there are no family members who are a suitable match,  the national bone marrow registry will be searched in the case that a bone marrow transplant is needed.  Typically, after the third round of chemotherapy is when determination is made whether a transplant is done or additional chemotherapy is needed.

To benefit Matthew and many others who are in need of a bone marrow transplant, a bone marrow drive has been organized in Naperville on Sunday, February 14th and Sunday, March 14th at St. Thomas the Apostle Church in Naperville from 8:30am to 1pm.  Additional information can be found here. The testing process is simple, painless and generally takes 5-10 minutes.  Here is a link to some FAQ regarding being a donor and what is generally involved in being a bone marrow donor.

If you are not local to Naperville, you can still register to be on the bone marrow registry by going to http://www.marrow.org/ and signing up for a registration kit through the mail.

Matthew....putting the 'Cute' in Acute Myeloid Leukemia

Leukemia humor is kind of a mixed bag.  Anyhow...the mini monster pulled his PICC line out last night which I think was destined to happen.  He has been pretty good about not pulling on it and such but last night he was destined to make it happen.  It is stiched into his arm, like with actual stiches, and he pulled out one of those and the rest was easy.  It stayed in far enough to finish the dose of Chemo he was getting but this morning, we made the trip down to radiology for a new one.  He was sedated for that procedure but the sedation did not last nearly long enough for my liking.  By all indications he is feeling great and is cruising the hallways (albeit pantless) today. His roommate is a little girl, 10 Years old, with bone cancer.  She had a couple of bones in her leg removed and replaced with steel rods.  Needless to say, she is in a great deal of pain and is also quite homesick.  It is difficult not to get angry at life while watching some of the illness-caused challenges many of the children on 4 West have doing the simplest of tasks.

We do have some very good news to report.  The results of the bone marrow biopsy are back and AML is present on less than 3% of the marrow cells.  Anything less than 5% is considered success and a great step.  This means that the chemo is working and is doing what it is supposed to do.  It is a great sign.   

Round 2

The second round of Matthew's chemo treatment starts today.  This round lasts for 8 days followed by a couple of weeks of rest.  He will start out this morning with a bone marrow biopsy to determine if he is in remission or not.  Irregardless, the chemo will proceed as planned.  His counts were still not quite as high as the doctors would have preferred.  We are looking to the bone marrow biopsy to potentially tell us why or if there is any additional cause for concern (as if we could possibly get 'more concerned' than we already are).

A spoonful of sugar....

Matthew is still home and doing great.  He has discovered these fruit chew things that he calls 'chewies'.  When he gets a craving for chewies, he will not rest, or stop saying the word 'chewies' till he gets a package or 3. We even got outside for a few minutes a couple of days ago when the temperature was still in the double digits.

Matthew is on 3 different medicines that he takes daily.  2 of them taste pretty good.  The third is not so good and is very gritty.  Nicole has been very creative about how to hide and disguise it so he does not spit it all over himself.  From maple syrup to smoothies, to strawberry milk, we have had moderate success.  There is really no risk of him figuring it out since we have Claire contributing to the plan.  Recently, she gave him his milk (it had his medicine in it) and said "Here you go little packy.  This is just Milk.  Plain old milk.  You don't have to worry about there being medicine in here 'cause there isn't.  It's just milk.  You're probably glad there is no medicine in here and it is just milk.  So, here it is, your milk, without medicine."  

Claire reading to Matthew while he eats chewies.