Ironically enough, on the celebration day of the Great MLK, Cutler pronounced to the doctor this morning that he has a dream and that dream is to be free from his room if only for a few minutes at a time.  Dr. Lenarsky was so moved by Cutler’s speech that he could find no way to say no and so today began another milestone…the ability to socialize Cutler with the halls of the transplant floor. 

Ok, so it was actually me that asked the doctor and he surprisingly said sure and it wasn’t a minute later Cutler and I were roaming the floor.  The reason I say surprisingly is that his WBC dropped to 2000 today after going another day without the neupogen.  The doctor does say that this is fully what he expects and it will just be a game of giving neupogen every couple of days until he is able to generate it on his own.  The picture above is from the kitchen on the floor and outside there is a bunch of construction going on and Cutler was very enthralled with watching the machines and cars moving around.

Cutler was given two more surprises this evening, the first being that Aunt Ellen was able to come stay and visit with him for a few hours while Melanie, Mason, and I got to enjoy a dinner together.  The second surprise that Cutler received was seeing his big brother peaking into his door window.  Although he is allowed to roam the floor when no patients are out, he is not able to see Mason close up just yet, but Cutler didn’t seem to mind.  An instant smile sprung to his mouth and he quickly showed Mason his new trick of waving hi.  The played peekaboo a bit and judging by Mason’s laughter, I am not sure which one enjoyed it more.  It really was a heart lifting moment to see how much Cutler still knows his big brother and to see how much Mason really enjoys entertaining his baby brother.  Can’t wait to get them both together at home again.

Saturday started out with a bang!  Cutler’s WBC count was 9900 (guess that dose of neupogen did the trick!).  Mason had fun playing soccer and then he and I went to the Stars game.  Boy did we get our money’s worth – the Stars won in double overtime and we stayed for the whole game.  It was a lot of fun to hang with Mason and see first-hand how much he enjoyed the game.  I think he was disappointed there were no fights; such a boy :).  My night with Cutler was relatively uneventful. 

My Sunday morning, however, was very exciting…I woke to find Cutler in bed playing WITHOUT any IVs hooked up!  Praise God!  They now have him receiving TPN at night so he has a huge chunk of the day untethered so we hope to get him down on the mat and rolling over and perhaps even crawling?!  We’ll see, no pressure.  He continues to eat baby food by either spoon or pacifier, and so far will only take formula via syringe.  We’ve brought some of the Dr. Brown bottles to see if that will entice him.  His count today is 4400 – so it dropped but that was expected since he hasn’t had neupogen. There’s no plan to give him neupogen, blood or platelets today, and he’s taking all meds orally.  He keeps this up and we’ll be home by the end of the month.

Below are a few pictures from Sunday morning…the first is his belly laugh and the second shows him in his exersaucer without any IV tubes.  I’m also attaching a video from Sunday morning so you can see how happy and playful he is today.

Yesterday was the first day without neupogen and as the doctor predicted, there was a drop in WBC.  His count dropped all the way down to 1900 and his ANC dropped below 1000.  The drop was expected, but I am not sure that it was expected to drop that much, but Dr. Lenarsky does not seem to be concerned.  Cutler was given another dose of neupogen today to help kick start him again and this will probably be a game we play for the next week until he can hold his own. 

Some good news from today is that Cutler is now eating almost solely from the spoon and is taking quite a bit of formula via the syringe.  Melanie did get him to drink a very minimal amount from the bottle, but he quickly vomited as part of his gag reflex to the bottle.  It is the strangest thing, but again everyone here assures us that he will drink when it is time.  He also is now taking two medicines orally and is having no issues with this at all!

Cutler has now started to wave hi and bye when prodded.  He really gets a kick out of waving his hands when you wave to him.  He was really going at it tonight and then naturally when I tried to film him he got a bit shy/distracted by the camera.  Watch his hands closely and you will see his wave. 

Tomorrow is another fun and busy Saturday for us starting with Mason’s soccer game at 10 am and then Melanie and Mason will be enjoying a Stars hockey game tomorrow afternoon together.  It’s time for them to have some good sports bonding time together.  I just hope he doesn’t try to hockey fight with her at the game.  🙂

I hate to start a post like this, but I am shocked at the hatred generated by my last post introducing the newest Cubs fan.  See the picture below, how could you want to break up such love between a father and a son?

In a few months you can fully expect to see both of my boys in full Cubs gear.  And we don’t care how much we lose, although it does cause pain year after year after year.  Cubs nation can hang their head high knowing that they didn’t win anything with a cheater like Mark McGuire on their team.  And before you bring up the Sosa thing, just remember that we didn’t win anything with him either.  🙂

Disclaimer:  This was all said with tongue in cheek.  I am used to my family badgering away.  I let them have their moments, because when Hell freezes over we will be the ones waving the pennant!

On to Cutler…

WBC was up to 5200 and the ANC was over 3000.  The doctor has stopped the neupogen for now and said that we should fully expect the WBC to drop at first and if it is slow to go back up they will use the neupogen as a kick-start.  Still the same in terms of eating, but they are stepping up the effort to give the medicine orally.

Another good increase for Cutler.  His WBC was 4100 and ACN was 3034.  Doctors have stopped the lipids with hopes it would help get him hungry and starting to eat, which appears to be work for the baby food, but he is still showing no interest the bottle.  The doctors have also started to change some of the medicine to oral, which he seems to be open to which is great news for now.  It’s looking like eating from the bottle will most likely be the long pole in this process, but I believe that he will start when he is ready.

These numbers keep getting better and better!  Today we hit 3200 for WBC and ANC was 2208!  In addition to that, he took formula for me via syringe and ate some baby food this evening.  The doctors continue to assure us that he WILL start to eat as his numbers increase.  So we just need to be patient.

Last night was quite eventful – I woke at midnight to a constant and loud noise in the room.  Apparently the ventilation system was over-filtering and we were literally suctioned into the room!  Needless to say, sleep was elusive until 4:30ish.  The system wasn’t repaired during the day…much to Grammy’s frustration…so Cutler and I are waiting to be moved to a different room, just for overnight.  They will repair the ventilation in our room tomorrow morning, then we can move back.  I pray that Cutler and I both get a good night’s sleep tonight.

Above are a few pictures from today.  You can see Cutler is a happy boy, as usual.  He wasn’t so sure about the hat after he had it on for a few minutes!  And we used Mason’s window chalk to decorate his windows.  I will have to assure Nancy and Maggie, the cleaning ladies, that I will remove chalk when we are discharged 🙂

Thanks for the continued prayer…we’re getting close to getting out of here and resuming a somewhat normal life.  God is great to the Fricke Four!

You want good news?  You can’t handle the good news! 

This morning we received some great news as his WBC is 2600!  That’s right, a 900 point increase.  And to make things even better, his ANC was 2000!  The plan is to give one more dose of neupogen and then watch the count to see if he can grow the cells without the stimulant.  If so, we have met criteria 1 of 3 to get discharged.

The second criteria is to eat so that we can be free of the TPN.  So far he is all over the map with this effort.  Some days he eats the baby food and some days he doesn’t have too much interest.  Today happened to be one of the days that he had no interest, but we were however able to get him to take some formula via a syringe.  So hopefully over the next few days we can work this up to actually drinking from the bottle and perhaps with the less medicine he takes, this will start to happen along with the increase in the white cells.

The third and last criteria is to take medicine orally and today was the first of the efforts and it was successful.  Granted it was only Tylenol, but still very good news that he was willing to take some medicine orally as this has also been a huge issue in the past.

I don’t want to set expectations and be too optimistic, but as long as he starts to eat I think he could realistically be home within two weeks.  Our fingers are crossed and prayers in full force for the continued improvement.  We had a great day with Mason, home sick from school, playing and actually watching a movie in bed with Melanie as well.  The only things missing were Cutler and pizza.

We are up to 1700 today!  The doctors will now allow visitors…Aunt Ellen and Cousin Austin wasted no time getting up here!  Cutler was pretty chill today, he played a little but not like usual.  Perhaps that’s because he kept Daddy up last night!  He did eat some baby food and took a tiny amount of formula for Grammy.

Will post pictures tomorrow, along, I hope, with an even higher WBC number.

Ditto to Aaron’s earlier post!  The pictures above are from Friday night.  Developmentally, he is starting to roll over more now (he was doing this before going into the hospital for his transplant…one step forward, two steps back), despite being tethered to the IV pole.  We feel certain that once he is off the IV, he will catch up to all his other buddies and cousin and be crawling…or perhaps he’ll skip crawling and just start walking!

Mason had another indoor soccer game today.  He did a pretty good job defending the goal and he tried to get his foot on the ball, along with the other 7 kids on the field!  Safe travel to Aunt Pat who flies in tomorrow afternoon for another visit.  Mason is very excited that she is coming here just to see him 🙂 

Thanks for the continued prayer; we feel it!

I have lost track of what day it is in this process and the lights are off so I can’t see the board to remind me.  Regardless, another day another increase in the WBC and the ANC.  The WBC is up to 1600 this morning and not sure what the ANC is, but it was high enough that the staff no longer has to wear masks and this seems to be confusing Cutler.  I think he actually misses seeing the masks as it was entertainment for him.  Either way, this is a big milestone for us and now that the WBC has continued to improve the doctors have reduced the neupogen to one serving per day to see if he can continue to produce without as much catalyst.  Still no progress on drinking from a bottle, but he does like the baby food…unfortunately he requires us to use his pacifier as a spoon.

Oh and an update on the broken furnace, it was fixed again, but they decided to go ahead and move us to another room yesterday.  The room is a bit larger, but more importantly the furnace works consistently and the door is rather quiet.  The nurses are now able to slip in like a ninja in the night.