Thanks to a couple of friends we learned that it might not be as easy to just head down to a local Carter bloodcare center and give them Cutler’s name and date of birth.  So, today we reached out to Carter and created a sponsor account.  So now, if you happen to stop by or donate blood at any Carter site or sponsored blood drive you can just give them this sponsor #:  SPON 048570.  Also, we are under the belief that now that we have set up the account you should be able to just give them Cutler’s name and they will be able to track it down.

While setting up the account, the rep at Carter did happen to mention that there were several donations already in his name waiting for the account to be opened so Cutler asked that I post the video above to help him thank everyone for their donations, but also to thank everyone that follows the updates and supports us with their thoughts and prayers.  We have heard from many many many people from all over, people we know, and people we don’t know and one of the main things we have learned from this whole experience is that there is a ton of good in this world and that even a mention of “hey, we are thinking of you” goes a tremendously long way to support our spirits.  So thanks again to everyone for their thoughts and prayers.  We are completely overwhelmed with the support we have and continue to receive.

Morning y'all

So it would appear that Cutler now thinks that the 4am medicine call is also the time to wake up and start playing.  He slept quite well throughout the night, even including the wonderful force feeding of ambigel.  This medicine usually irritates him so much that he won’t back to sleep, but this morning it was not an issue.  However, come 4am when they started the chemo he was more than happy to get up and talk and play (see above photo) and even eat.  Should be fun to break him of this habit once he gets back home.

Got to meet the fourth and final doctor from the practice today as he came in for a visit earlier than any other doctor so far.  He actually was in the room by 8:15 and he had the usual good news.  But even better is that Cutler’s blast count is not detectable.  Blast cells would be the immature bad white cells, so that is a very good thing.  His white cell count continues to drop, which is customary for the chemo treatment and his blood count hovered near the same as yesterday.  Platelets dropped almost in half, but the doctor is not concerned.

Cutler is scheduled to undergo another spinal tap tomorrow morning.  This will hopefully be the last one for a bit as the previous tap showed that for all intents and purposes the leukemia was no longer present in the spinal fluid.  So this tap is to draw fluid one more time to validate as well as shoot just a bit more chemo in for good measure.  Not sure if we have mentioned before, but all of the bumps/lesions on Cutler do appear to be gone, yet another sign of the chemo working away.

Dyanmic Duo

Unfortunately this photo is not from the hospital, but today has been a long day and so I haven’t had time to take any good pictures to post.  First of all, it was more of a long day for dad than for Cutler.  Cutler had another uneventful day and even woke without a swollen eye despite his mother staying with him last night.  The doctor is still happy with the way Cutler is reacting to the medicine and in fact his platelets were in the 60’s, the highest they have been, and the target is 75 so Cutler is continuing to prove that he is a tough little fighter.  It’s Cutler’s toughness that helps both Melanie and I draw our own strength.

So other than Cutler’s continuing improvement, not much else is going on.  I did start back at work today and it was a bit more difficult getting moving than I had expected, but once I got back it was actually good to focus on work as a break from reality.  At first it was harder to actually talk to people about what is going on instead of just typing about it in the blog, but after talking to several people it became easier and the “speech” was a lot easier to work through.  Unfortunately, because I was at work, I missed the visit from the doctor who also provided a road map to help us understand further the days expected for treatment, rounds of chemo, and eventually the transplant.  I do have the paperwork, but haven’t had a chance to review but from what Melanie explained to me we are probably looking at Christmas in the hospital.  Perhaps Santa will be gracious enough to visit with a successful transplant.  Once I get a chance to look it over in more detail I will definitely put together a quick post about it.

A funny story about our doctor that just slipped into my head is his accent.  Well to be clear, the Oncology group here has four doctors and they rotate weeks with us while the other three work in the office.  The doctor that we have had for the past week is Dr Ghisoli and I am sure that I completely butchered the spelling, so my apologies if you are reading this.  As it turns out, he just moved into our neighborhood just around the corner from our house and was kind enough to throw out his address.  I have already done several walkbys and am confident we can make it there in under two minutes and probably under one minute in case of emergency.  Anyway, our good doctor is originally from Italy and then I believe he grew up in Venezuela.  He has this wonderful accent that every time he discusses the blood results I picture dracula.  I swear he sounds just like him every time he says blood and it is so hard to keep a straight face.  Probably funnier to me, but if you are ever here visiting and he comes in I will be sure to work the word blood into the conversation.  🙂

Last night was a bit of a rough night for Melanie.  Cutler woke several times throughout the night crying out and this is rather unusual for him as he has always been a sound sleeper.  Then when he finally woke for the morning, Melanie “noticed” the swollen right eye.  She swears that she didn’t have anything to do with it, so we will just go with the story that it must be the way he slept on it.  But fear not, the swelling is gone.

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.