And a fresh attitude to fight comes along with it.  Today has been an up and down day for Cutler as we try to get his stomach adjusted to having food in it.  From what I understand, the objective is to have the pump up to 50 ml per hour before he can head home and we can’t get to 20 ml per hour without him vomiting. 

So far he has had three big vomiting sessions today and leading up to the vomit, he is in tremendous pain crying out like I have rarely seen from him.  However once he vomits, he is usually happy go lucky and the pain is gone.  After the last episode, we turned the pump down to 10 ml per hour and at midnight, when he gets more medicine to help with the nausea, they will bump it up to 15 ml and then we will keep increasing by 5 ml every four hours to see how he goes. 

Based on today, I find it highly unlikely that he will get home tomorrow, but that’s alright as we want him home only when he is ready to come home.  Dr. Ghisoli is doing everything he can to get him home, but I did warn him that once he gets home the house calls (reminder: he lives right around the corner from us) will soon start and he said that as long as there is beer we should be good.  🙂  Now that’s a health plan the congress should look into passing.

By the way, thank you to everyone for their thoughts, prayers, comments, and reaching out to me.  I would like to be as positive as possible at all times,  but I also want this blog to truly represent what we are experiencing so that we can use it against Cutler when he starts to give us grief in his teens.  🙂

Cutler spent today still recovering from the surgery.  He slept the majority of the night and woke up in a decent mood, but did require some pain meds throughout the day.  His stomach is a bit swollen still and so it makes it uncomfortable for him to sit up, so the majority of his day is either lying on his back in the bed or being held for comfort.  He did however spend a bit of time in his bouncy seat, which he seemed to enjoy.  His playful spirit is still definitely there, especially when the pain meds are in full effect.  🙂

We have started the feeding process via the tube tonight starting with pedialyte and around 3 am will switch to formula.  While pushing those, they are still pushing the TPN and the goal is to work our way off the tpn as we increase the formula via the tube.  Yesterday the doctor thought that Friday was still a good goal, but I just have the feeling with the amount of progress we need to make between now and then, it probably won’t happen.  Then again, my optimism has been squashed a bit lately and so perhaps I am just trying to avoid being disappointed.

Speaking of optimism issues, we finally got the results back on the test to determine where the cells are being generated and it was a bit disappointing.  It is currently 70% from the donor marrow and 30% from the original marrow.  While it isn’t necessarily a bad thing, the doctors would have prefered to see something closer to 90/10.  Let me be clear, this was not a test of whether or not the leukemia has resurfaced.  The doctors are still pleased with how well Cutler is doing and they did say that the percentages could still change in favor of the donor.  It was also mentioned that this test is normally done around day 100, so it might have been a bit premature.  The next step is to, in a few weeks, perform some more molecular tests to determine if the mll is still around.

I’ll be very honest here and let you all know that I didn’t take this news well and am still working through it.  This was very disappointing to hear after feeling like we were well on our way down easy street.  While the news isn’t necessarily bad and as mentioned above, I am just tired of being knocked down every time it seems like everything is going good.  I don’t want to complain and be negative, so our only choice is to pick ourselves back up and continue to push on with the fight.  All I need to do is look into the eyes of our beautiful baby boy and the determination that exists within his heart pushes me back into the fighting mood.  Please everyone continue to pray for our baby Cutler to continue the fight and for God to continue to heal as we obviously still have a very long road ahead of us.  Getting him home on Friday, Saturday, or whenever it will be, is just another milestone of many still to surpass and this news has quickly reminded me of this.

The surgery for the gtube started a bit late, but was a success.  Aside from a large amount of pain for Cutler, everything has gone well.  Because of his growing tolerance to the anesthesia medicine and pain killers, Cutler has pretty much been asleep the entire day since the surgery.  For quite a few hours he would cry out in pain every few minutes, but that has subsided and he is resting comfortably in his bed.  His WBC dropped to 1400 today, but his ANC is still over 1300 so the doctor is still happy with where we are and they still think that barring any setbacks we should be able to get him home by Friday.  Thank you everyone for your continued prayers and support.

I think I figured out why he isn’t in any hurry to drink…I think he is enjoying the spoiled a life a bit too much.  The picture above is an example of how he is kicking me out of the recliner in his room.  🙂  I’ve been praying that Cutler would magically start drinking from the bottle and then the tube wouldn’t be required, but we are quickly running out of time. 

The feeding tube will be put in at 11:30 tomorrow morning and then hopefully we will be home by Friday, just in time to snuggle together as the weather starts to turn cold again.  Of course that all depends on how well things go with the tube and then the recovery.  I know it is a very quick and minor surgery, but I am still very nervous.  But whatever it takes to get him home.

Dr. Weinthal was pleased that Cutler’s WBC was 2100 today, despite not having neupogen for some time now.  The plan is for the feeding tube to be inserted on Tuesday at 11:30, with the possibility of coming home on Friday.  Unfortunately, Cutler still is refusing to drink from the bottle no matter what we entice him with!  We’ve tried formula, apple juice, banana yogurt juice, chocolate and strawberry Pediasure…you name it, we’ve tried.  We’ve also exhausted every type of bottle, nipple, sippy cup, etc.  I’m telling you, he is refusing to cooperate!  Stubborn, just like his daddy.

Attached is a video of Cutler’s newest trick.

And yes, I strapped the booster seat to the chair!

And although we said goodbye to Nana yesterday, we welcome Grammy back from NY!

I’m tired and lacking wit, but I do have some updates for everyone.  First of all, Cutler’s WBC dropped to 2000 today, but the doctor is comfortable with this level and is not concerned.  Cutler continues to avoid drinking from the bottle, so we have made the decision to go with the G-tube or feeding tube.  After talking with the doctor some more today it just seems like the best choice especially since it should help stimulate his hunger and hopefully lead to Cutler hitting the bottle sooner.  The surgery is scheduled for Tuesday morning and if all goes well he could be home by Friday.  But before getting too excited, I must quote the great godfather of pediatric marrow transplants, Dr. Lenarsky, “I will tell you when he is going home when he is in the car”.  Many things could happen between now and then, but all things are looking good for now.

I would like to ask for a special prayer request for my Aunt Linda, a.k.a. the Comment Hog.  Despite being an avid walker, she somehow forgot to lift her foot today while walking and took a pretty bad fall that left her with a fractured shoulder that will require surgery on Monday.  After spending all day in the ER, they sent her home this evening in a sling and with pain killers until Monday when they will do the surgery as an outpatient procedure.  I believe that he also has a crack in her sinus cavity, but my dad wasn’t completely sure on this.

And a special “see you later” to Nana as she boarded a plane this afternoon back to Lake Charles after spending nearly two months with us to help take care of Papa Herman for a bit.  I say see you later, because it will never be good bye no matter how many shirts you might shrink.  🙂

The board says day 45, but I think that was from yesterday, but my math says day 47.  I really don’t have a clue anymore, but what I do know is that his WBC shot back up to 11,000 and his ANC is over 10,000.  And all of that was from one little dose of neupogen.  A much smaller dose, in fact, than the one that helped shoot him up to 9,000 a few days ago. 

Today Dr. Weinthal talked like that might be his last dose, but we will have to still see how things go.  He also mentioned that they will be sending some blood off for the test that will determine how much of the cells are being generated from the new marrow compared to the old marrow.  We should get the results back on Friday and this is another hold your breath and prayer moment for us as we want the new marrow to be generating everything if possible.

Dr. Weinthal also expressed a bit of concern that while Cutler is eating a lot of baby food, he still isn’t drinking from the bottle.  He is concerned that most of the nutrients that he needs will come from the formula, but he did talk of using TPN at home, so that leads us to believe that we could be rather close to getting home.  PLUS, this evening I actually got Cutler to drink a bit from the bottle.  It was a tiny bit and he spit out more than he swallowed, but it was a huge step for him to just keep the bottle in his mouth.  In fact, he wanted to keep putting it back on his own.  It’s almost as if he has forgotten how to drink out of a bottle, as he takes his meds and formula just fine from a syringe.  Hopefully some work with the occupational therapist tomorrow will help us get past that quickly.

Otherwise everything is great.  When I got here this evening, Cutler and Nana were hanging out in the kitchen watching the cars drive by.  This appears to be one of his favorite activities, along with watching cartoons now.  He will sit there and just start laughing away.  The video below is from this morning as he sat in Nana’s lap and watched Dinosaur Train. 

Since I am on a rambling pace, I do want to mention how his personality continues to evolve almost daily.  I remember Mason’s evolving over time, but perhaps it is the situation we are faced with Cutler in that I notice something new almost daily.  Like Mason, he really is an extremely happy and friendly baby, but he is also starting to show a very mischievous side.  Tonight while we were rocking he would just grab my moustache and pull as hard as he could and then just smile and start laughing.  I think he gets this from Melanie.  Below is a video from my phone (excuse the layout) after I finally got him to quit ripping away at my face.

Oh, and Cutler also had two more teeth cut today.  Unfortunately one of them was bleeding quite a bit, so he was given some clotting medicine which seemed to help until about 7:30 tonight when he started to bleed again.  He is now getting platelets while he sleeps, since his count was low, and hopefully this should resolve everything by morning.

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.  🙂