No hospital today

Looks like the little man's counts were not quite high enough to begin the next round so he is on his way home for the weekend.  Looking at maybe Monday or Wednesday of next week to try again.

12/29

Matthew is off to a scheduled visit to CMH tomorrow morning for a bone marrow biopsy and the standard blood tests.  If his counts are up, he will be admitted and we will start the 2nd round of chemotherapy.  If his counts are lower than expected, he will come back home and wait a few more days for his blood to further recover.  We should know by noon tomorrow.  

We heart Neutrophils

Matthew is home again after an 8 day holiday filled stay at Children's Memorial Hospital.  His Neutrophil count was nearly 300 which is not as high as the 500 they would like to see but is higher than the 60-90 he has been measuring for the past few days.  The upward trend was encouraging so we were given the release and it is great to have everyone at home.  Claire summed it up best when she saw her 'little brudder', hugged him (not too tightly), and whispered to herself "this is the greatest present ever".

Merry Christmas!

Merry Christmas / Happy Holidays from all of us.

Matthew took this one.

Claire's bone marrow test results

We just found out today that Claire's bone marrow is not a match to Matthew so she will not be able to be a bone marrow donor in the event that a bone marrow transplant is necessary.  It could still be possible that the chemotherapy does the job and a BMT (bone marrow transplant, not to be confused with BLT) would not be necessary.

In better news, Matthew is feeling well and in very good spirits.  His neutrophil counts started coming up today (they are at 79) but still not high enough (approx 500) to go home.

Update on Claire's bone marrow test

We are still waiting on the results of Claire's bone marrow test.  The test generally takes 4-5 business days but can take up to 2 weeks.  Stay tuned.

12/22

The little fatness (although getting skinnier) is doing very well this morning.  He slept great last night after not napping for a minute the entire day yesterday.  His roommate Armando (16 yr old) and he are having a good time.  I think Armando is teaching Matthew how to play Call of Duty on the PS3. 

Matthew's PICC line was giving us some problems over the past few days.  Medicine would go in but we could not get anything (blood) out.  The doctors put a few different medicines in his line yesterday to try to dislodge whatever was happening and we didn't have any success until this morning when they were able to successfully draw blood from his line.

His ANC (absolute neutrophil count) is still zero.  It needs to start coming back up before they will let him leave so it is looking like Santa will be delivering his presents to Children's Memorial this year.  Not that big of a deal seeing that he is in the best place for him to get better. 

Team Matthew Gear is here!

Many thanks to Jennifer Rosenbaum for putting together the 'Team Matthew' gear website.  Click on the link in the 'Links' section on the right side of this page.  There are some coupons floating around the internet that you may be able to find.  Here are some examples to try.
        Code ($5 off a purchase of $20): HOLIDAYSURV2
        Code (10% off any purchase): GIVEZAZZLE09
        Code (10% off t-shirts): 10OFFTSHIRTS

12/21

Sorry for the extended break since my last post.  I have taken the past week or so to catch up on some much needed sleep.  It has been nice having the family together and Matthew's time at home has been great.  On Saturday, however, we ended up back at Children's Memorial due to Matthew having a fever.  We kind of knew something was not right when he asked to go 'night night' at 4:30.  His fever was 102.6 so we brought him in on the recommendation of the doctor. 

In the ER, the nurses, who continue to be incredible to us, gave Matthew tylenol and within about 10 seconds he was throwing up all of the front of himself and me.  The poor little guy was really out of it.  They gave us a room in the ER and hooked Matthew up to an IV and within an hour or so, he was feeling much better.  We did end up being admitted and ended up on 4west (the oncology/hematology floor at chh) at abou t 11:30.  Little man's fever was very stubborn that night and he was tossing and turning for most of it. 

On Sunday, we was fairly tired and restless from being up most of the night before.  We took a couple of good naps which made a good difference.  On Sunday everning, he did spike another fever of 101.6 but that subsided overnight and this morning his fever had gone down. 

We should have the results of some of his blood tests today to determine if there is a bacterial infection causing the fever or if it is something else.  We should also know over the next couple of days the results of Claire's compatability test to determine if she is a bone marrow match.  If she is a match or if there is a match on the bone marrow registry, Matthew will have a bone marrow transplant. 

It is weird to think that Christmas is this week.  we are still very unsure if we are going to be home or not and are prepared with a series of backup plans with whatever happens.  Continued thanks to all of those who have reached out with support for Matthew and our family.  It is very difficult to put into words how it makes Nicole and I feel knowing that there are special people who selflessly care for us. 

Matthew is home!

It has been a very long 2 weeks. It is a long way from over but we are happy to all be together.

Thank you to everyone.

Team Matthew

The special things being done for Matthew are almost too numerous to mention.  From cupcakes to trucks, tractors and books given to him to the incredible love shown to Claire as well, it is difficult to describe how much this means to Nicole and I.  Recently, our good friends Jennifer and Katherine ran in the Rudolph Ramble 8k, a race to benefit Children's Memorial Hospital in Chicago.  Aside from nearly winning the race, they had t-shirts printed with "Team Matthew" and a picture of the little man with his signature mohawk and cute smile.  Jennifer and Katherine wore the shirts during the race and also had several others made for Nicole, Claire, and I, and also for the members of their families.  Matthew has his own 'Captain' shirt. 

Nicole and I received some training on how to care for Matthew's PICC line.  Nicole is way better at this than me and the nurse was not amused at my comment that I would be training Claire on how to flush his line.  He needs his line flushed daily to prevent blocking from occuring.  Last night Matthew received platelettes and had a little bit of an allergic reaction to them.  He threw up a little bit in the middle of the night and woke up with what looked like little black eyes and a rash on his legs. We are still hoping to go home in the next few days, even if it is only for a little while. 

12/14

Have some good news and bad news.  Which do you want first?  The good news?  Ok, good choice.  Today is Matthew's last day of chemo for the first 10 day round.  You can tell he is starting to feel very tired and is losing a lot of his energy.  He still likes his walks but now he likes to be carried for a good portion of them.  He does ask to get down to wash his hands in the drinking fountain.

Now for the bad news.  We were originally scheduled to go home today but it looks like we will be guests of CMH for a few more days.  On Saturday, Matthew spiked a fever of about 101.9.  This could have been caused by 2 things.  One of the side affects from one of the chemo drugs is fever.  The other possibility is an infection caused by bacteria.  He had blood cultures taken to determine if any bacteria was present.  Yesterday, Sunday, Matthew had another fever of 102.7.  He was started on a general antibiotic.  We learned last night that there was something growing in Matthew's blood cultures which indicates the presence of bacteria.  Once the type of bacteria is determined, we will switch from a general antibiotic to one more specific to better target this type of infection. 

I hope everyone had a great weekend.  Nicole and I want to continue to thank everyone for their support and care over the past 2 weeks.  We have been deeply moved by all of the prayers and well-wishes for Matthew. 

Stay tuned for some photos of official gear from 'Team Matthew'.

You mean he is gonna look like daddy?

So we have begun talking with Claire about Matthew and explaining his sickness and what she can expect.  Needless to say, she has countless questions and misses her brother terribly.  Today she is going to be tested to determine if she will be a bone marrow match for Matthew when it comes time for a bone marrow transplant.  The results of that test generally takes 4 or 5 business days.  In a discussion last night, Nicole told Claire about Matthew's PIC line and how he was going to lose all of his hair.  To which Claire responded, "You mean he is gonna look like daddy?"

12/10

Packy is doing well and continues to amaze me.  He had a blood transfusion today due to his counts being low.  Today is the coldest day we have had since February, yet Matthew insists on walking around shirtless.  Here are a few photos we have taken so far with one of Claire. 

12/8

I took this picture this morning shortly after Matthew woke up.  He was definitely in a good mood until the nurses came in and informed him it was time to change his lines. 

I had called down to order him some food and the food service folks told me that cottage cheese was not available on his special diet.  after informing the doctor of this, there is now an official doctor's order stating that 'the patient can eat as much cottage cheese as he wants.' 

12/7

The little man is finally asleep.   He probably got worn out putting his PIC line in his ear and using it as a telephone saying 'Hello?  Hello?'  Matthew is feeling well and is acting eerily similar to his old self.  Nicole was with him for most of the day and I heard about the many walks he took.   After dinner he got a little sponge bath.  I was on the fence about whether I was going to go ahead with the sponge bath but a botched diaper change (the bad kind) on my part made that decision much easier.  I am very glad he is not in any pain at this point.  I know that may change quickly.

Nicole met with some of the volunteers from social services to discuss how we can address Matthew's illness with Claire.  They gave us a doll with a PIC line in it, a Charlie Brown video, and some other lit for us to read to help us talk to Claire.  She is so curious and smart, I know she must have a ton of questions.  I have only seen her a couple of times in the past few days.  I sure miss Claire.

Please keep hoping.

12/6

Sorry for the fuzziness of the photo.  This was taken after one of our walks this morning.  I would like to draw your attention to the yellow booties that Matthew despises and tears off immediately after his walk, but he loves the walks.  Much of the floor today was empty and we were able to get up to full speed on some of the longer hallways.  The walking pain that he has been feeling for the past few weeks seems to be gone.  We are told this is probably because the infection causing the discomfort has been removed by the chemotherapy.

Matthew continues to approach each day with great energy and determination.  He amazes me with his courage as he wakes up in strange places surrounded by strange people with cold stethoscopes and rubber gloves touching him and he acts as if he as seen it all before.

We did have a nice nap today.  Matthew and I turned on the Bears game at noon and he was asleep before the Bears first turnover, or, in about a minute and a half for those of you lucky enough not to have watched.  The chemotherapy continues to be administered on schedule.  His blood counts are coming down as expected.  The nausea that Matthew was feeling a couple of days ago seems to be under control with the help of medicine that Matthew now receives regularly.  He is still not eating a ton but the donuts and cookies that he does eat brings a contagious smile to his face.

The little dude is no longer in isolation so now has a new roommate after he changed rooms.  Her name is Eunice and she is 14 months old and is nearly as cute as he is.

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them.  When you think about it, what other choice is there but to hope?  We have two options, medically and emotionally:  give up, or fight like hell. 

~Lance Armstrong

packy update

The first round of chemo is done and we are on to the second dosage.  Matthew (he is also referred to by many other names such as but not limited to, "packy", "Mdogg", "mj",  "little dude")  is hanging in there with incredible fortitude.  


He did get sick last night and threw up most of his cottage cheese.  Since then he has been given medicine for his nausea and he kept down today's helping of cottage cheese.  He loves cottage cheese.  He woke up this morning in quite the cranky mood.  When the regular doses of Tylenol and Ibuprofen were not doing the trick, he was given a small dose of morphine and that agreed with him very well.  


Aside from the cottage cheese and occasional fistful of teddy grahams, he is not eating too much.  We received a very nice gift of cupcakes and, with the precision of a talented surgeon, he removed and discarded the cake part of the cupcake leaving only frosting for him to smear on his face.  


He went for a walk around his floor of the hospital and did great. After being in a bed for the past three days, he must have felt great to get out and about.  He felt comfortable enough to make the trip in only his diaper and little yellow booties.  He also made sure to stop by the nurses station so they all could noticed him.  He has so many wires hooked up to him and they are driving him nuts.  Currently there are 7 wires or tubes connected to him in some fashion.  He love to play with his trucks and tractors which distracts him for short periods,  


The support continues to be incredible and Nicole and I are touched deeply by the thoughts and well wishes.  Keep praying and hoping.  

Worst fears confirmed

Our worst fears were realized this afternoon when we received the confirmed diagnosis of AML (acute myeloid leukemia)  for Matthew.  I think Nicole and I had prepared ourselves for this but were holding out hope that maybe there was something in the last test that would point somewhere else.   Matthew did great when they put in his PIC line and even during his spinal tap.  The sedatives did their magic but he still managed to make some cute faces at the nurses.

Matthew will be part of a study that is aimed at developing a new drug for treating leukemia.  This drug is designed to work specifically on the chromosome (11) that is affecting Mdogg.  

So what's next?  Beginning tonight, Matthew will have 10 days of intense chemotherapy.  When that is complete, he will be able to go home for a month or so while his blood counts come back up.  At this time, he will return to Children's Memorial (cmh) and have 8 more days of chemo.  Assuming no problems, he will return home for another month and then back to CMH for 5 more days of chemo.  At this point, there are a couple of different things that could happen, including a likely bone marrow transplant.  

CMH has been great.  We feel very fortunate that we are being cared for by the doctors and nurses there.  Matthew, although tired and rightfully cranky, is in pretty good spirits and enjoys being naked all the time.  He also learned a new word...'doctor'  and likes playing with the mechanical bed.

Thank you for all of the thoughts/prayers/and well wishes.  

Matthew's status 12/04/2009

Not sure how this blog will work out but thought it might be a good thing to try as there are many concerned and caring people thinking about Matthew.  I wanted to update everyone on where we are with Matthew's status. 

For a brief background...Matthew was admitted to Children's Memorial Hospital in Chicago on Tuesday.  He had a strange rash on his leg and when a blood test was done, there were some oddities that were shown. 

As of now, we are waiting to hear from the doctors regarding the final test of Matthew's bone marrow biopsy.  The first 2 tests were inconclusive, meaning, they could not tell absolutely that leukemia was present.  This last test should be conclusive.  Needless to say, the not knowing has been very trying. 

Last night, I asked one of the dr's if she was a betting woman.  She said no.  I asked if she was, where would she put her money.  They said that she believes it is AML (Acute myeloid leukemia) but she cannot say for certain and they cannot really say anything unless they know absolutely.  

The bone marrow biopsy typically takes about 2 days and it was started on Wednesday afternoon so we should know at sometime today. 

Matthew is doing well and from all indications is pretty comfortable.  He had a bath last night which he did not enjoy very much.  He liked playing with his new tractor and was fascinated by putting his cookie in the back of the truck and removing it over and over. 

Please keep praying with and for us and hoping for the best.