Last night was yet another successful night.  In fact, Melanie says that he practically slept through the night despite the intrusions.  I’m not sure if it is Melanie or not, but it seems both boys sleep through the night and late for her, but not for me.  My explanation is that I am so much fun they can’t wait to wake up and start playing.

The doctor came in today and said all the right things.  Cutler is responding well to the chemo and his system is reacting accordingly.  The white cell count is on a steady decline, but more importantly the bad white cells are also rapidly on their way down.  All of the bumps and rash have disappeared and he remains in incredible spirits.  His blood count and platelets are still low, but that’s what blood banks are for and we are making a steady exercise of withdrawal. 

Cutler has lost a bit of weight, but nothing that is causing the doctor concern as he continues to drink from the bottle and has actually increased his appetite a bit.  He is almost back to his prediagnosis eating habits.

Get up already daddy...

The only thing better than waking up to this, would be waking up to this at home with Mason and Melanie by my side.  Last night was another great night for Cutler.  No oxygen required at any time, not even during or after the chemo treatments.  I was even able to sleep surprisingly well, minus the random play time when Cutler woke up and wanted to play around 4 am.  If it weren’t for the medicine and monitoring, I believe he would be back to happily sleeping through the night. 

The only negatives that we are experiencing right now are bouts of vomiting as part of his first feeding immediately after a chemo treatment.  But not to worry, once he if finished he is back to a big smile and fortunately he doesn’t eat real food yet so it is an easy clean up…and if it wasn’t the easy button (nurse call button) is very close by.

After one night in the ICU, we are back in our “old” room.  Cutler is doing very well today…smiling and laughing.  Sometimes it’s hard to believe he is as sick as he is.  But we know things will get worse before they get better.

Thank you for all of your kind words of encouragement, thoughts, calls and prayers…we feel the love and prayers of everyone who is cheering on Cutler to beat this awful disease!

Melanie

No more smiles...for the camera

Cutler had a pretty decent night of sleep, which is amazing considering the number of times they come in throughout the night to administer medicine, take blood, shoot chest x-ray, take vitals, and put the darn pulsox monitor back on.  This is Cutler’s favorite activity of late, kicking the pulsox monitor off, which sets off the alarm and then wakes me until I either get up and put it back on or the nurse does.  I seriously think he is doing it on purpose for entertainment purposes, but if it makes him happy he can kick all night.

This morning he was a bit groggy and we had some distasteful reactions to the chemo, but starting around 9:30 he turned back into the lively and happy Cutler.  You should have seen his eyes light up when Melanie came into the room.  He really does continue to amaze me with his resiliency.  And to further my point on the pulsox monitor, he has kicked it off four times in the five minutes I have tried to sit down and write this. 

So the good news is that it looks like Cutler is going to be on the move again.  The PICU doctor told us this morning that he is looking good, perhaps even better than yesterday morning and doesn’t see any reason to keep him down here.  He explained that yesterday he was fully expecting to have to escalate meds and treatments for his congestion and breathing, but he didn’t have to do a thing and doesn’t expect that, for now, he will have to do anything further so he is releasing us back into the capable hands of the oncology floor.  Waiting for the oncologist to provide us the same info and determine if it will be to the transplant floor for constant monitoring or back to our old room.  We are hoping for the old room so that we can eat in the room again and so that Mason can see him again.  Don’t worry, we will leave a forwarding address with either decision.  Until then we will just sit tight and continue to play and hopefully sleep again sometime soon.

Intensive care can be a good thing for some people

Overnight was a bit rough for Cutler as his battle with congestion continued and eventually lead to the addition of oxygen to his repertoire.  The congestion is a result of an ongoing battle against infection as well as the dieing white cells (a result of chemo).  Because of the congestion he simply wasn’t getting enough oxygen in his blood, but adding oxygen has helped him in this manner.

However, because of his declining ability to fight off infection he has been moved to the pediatric intensive care unit.  For some reason this has lifted his spirits.  Prior to the move Cutler was in a nondescript mood until the ride to the PICU.  It was like a switch that turned on and he started to smile and by the time we were situated in the new room he was fool of smiles, laughs, and wanting to play.  All of the nurses are quick to point out that if it weren’t for the blood work, they wouldn’t believe he is sick.  This makes us feel that much better about his strength and ability to win this fight.

The aggressive chemo continues and the output is proving it as we have full diaper after full diaper…which is a very good thing.  From what I have learned, this is the best way for the dead cells as well as the chemicals to exit the system.  The swollenness (I realize that isn’t a word, but can’t think of a better description) has reduced dramatically and he once again is our happy little man.  When he was born Mason insisted his name was Cutler Superbaby Fricke and so far, despite being early, he is yet to disappoint such an anointment.

Cutler showing his game face

So we heard from the doctor today around noon and first and foremost I must tell you that if anyone was to have the misfortune to experience this they would be lucky to have a doctor such as the one we are blessed with.  Dr Joel Weinthal has been incredible all weekend long and has the ability to make me feel more confident with each meeting.

Now onto the news.  Cutler has been diagnosed with Infantile Acute Mylocytic Leukemia, which is very rare for infants.  According to the doctor there are roughly only 900 cases per year of this particular type of AML and so Cutler continues to prove that he is indeed a unique and special baby.

The nurse has now begun administering the chemotherapy.  Because the objective of chemotherapy is to destroy all white cells in the system in an effort to eliminate the bad ones, the biggest concern right now is infection.  And so he was moved into a new room with a special air filtration in place.  Because of the concern for infection he will be in the hospital for at least a month before maybe getting to get go home for a few days before coming back in and starting round two. 

The doctor estimates that after three rounds we can begin to look at bone marrow transplants.  Many people have brought up the potential of being a donor and we appreciate this very much, but from what I understand so far is that the marrow would more than likely have to come from Mason.  Mason has a 1 in 4 chance of being a match.  If Mason isn’t a match, he is extremely confident that he can find a cord blood match.  But that is further down the road and so more information on that is to come.

As for Cutler, as you can see from the picture above, he is still in good spirits.  Around 4:30 this morning he appeared to have lost the effect of all of the anesthesia and returned to his jovial self and decided to talk and play with me for about an hour before finally falling back asleep.  He is rather swollen, but this is from being sick as well as being pumped full of liquids.  Again, despite all of this he is still very talkative and quick to flash his trademark smile.

Thanks again to everyone for your thoughts and prayers.  More updates to come…

Resting after a long day

I hate to start off the family blog like this, but here goes.  As many of you know by now, Cutler has been hospitalized with Leukemia.  It all started yesterday morning (Friday 9/11 of all dates) at Mason’s four year old check up.  About a week ago we noticed several bruise like bumps on Cutler’s back and then on Thursday noticed they had spread to his scalp and stomach so we figured we would bring him along to Mason’s appointment and get a two for one.  The doctor originally thought they were some form of hemangioma, which she considered was not a big deal, but to be safe sent us immediately to the oncologist.

At the oncologist appointment, he immediately said that it didn’t look like hemangioma to him but wanted to take some blood tests to be safe.  He didn’t think that it was anything life threatening and just recommended that we see a dermatologist next week.  Well about five minutes from home I get a call that we need to come back to discus the blood results.  We arrived back around 3:30 and were immediately admitted into the hospital and the fun for Cutler began.

Fast forward to this morning, Cutler was put under anesthesia for a bone marrow biopsy and a spinal tap to help determine what we were dealing with and the doctor mentioned that over the next day or two he would like to get a central line put in.  Well about 15 minutes after coming out from the biopsy the surgeon happened to be there and ready to put in the central line and so back Cutler went under anesthesia.  Needless to say, it’s been a long day and as you can see from the picture above, Cutler is resting well…until they have to wake him to weigh him any minute now.  🙂

The doctor did come talk to us, but he is waiting for more results to come back.  What he did have to tell us is that from the biopsy he sees that 60% of the marrow is bad cells, so it is definitely leukemia.  The spinal tap did reveal that the bad cells were present in the spinal fluid as well, but he expects to eliminate that issue within a few days of treatment.  The doctor expects to have the final plan of attack in place tomorrow at which time we will learn a lot more.  Until then Cutler is catching up with some blood transfusions and did receive his first bit of chemotherapy as part of the spinal tap procedure.

Mason is doing very well.  Last night he and I had a great time together racing go carts and trashing a pizza buffet at Amazing Jake’s and today he had a blast reaping havoc with the Hobbs’ boys.  He is now having movie night at home with mom, the grandmas, and Aunt Pat.

I would like to thank each and every one of you for your thoughts and prayers.  It means a tremendous amount to the team.  We only wish we had enough time to respond individually to each and every one of you.  Please accept this blog as that effort for now.  We recognize that this is going to be a very long fight, but Cutler is very strong and with God on our side we will win this fight!