Cutler is still in the hospital and still having issues keeping down the formula, but having no issues spending time with his big brother.  Today we got permission to bring Mason up here and so we had a family pizza night together in our tiny little room.  When I first told Mason after church today that he could go in the room to see Cutler I thought I had seen the biggest smile I had ever seen…that is until I saw the smiles on both of them when Mason walked into the room.  Cutler lit up like I have never seen before and would not take his eyes or hands off of Mason.  Everything Mason did, would make Cutler laugh…even him coughing. 

He hasn’t had the best past couple of days as we are constantly trying to increase the dosage of the formula and every time we think we are taking steps forward he ends up vomiting.  We need to be at 90ml per hour, I think I originally said 60, but as it turns out I heard wrong.  The highest we have been is up to 30 and we are currently running at only 20 to see how he does with a new formula that is supposed to be easier to digest.  Based on our issues, it doesn’t look like he will be home tomorrow, but we are hoping for Tuesday as Melanie is flying out on Wednesday for a work trip to New York until Friday, but we will take him coming home any time we can get it.

I am hoping that Mason’s visit may have lifted Cutler’s spirits so that he will start to tolerate everything much better.  As you will see in the videos below, even the nurses got a kick out of seeing the two of them together and they all commented on how much of a lift it appeared to give Cutler.  It’s amazing how much he looks up to his big brother and how loving and calm Mason is with him in return.  Mason was even sad when he was leaving, so I am thinking we may just bring him up here every day after school to help keep Cutler laughing and in good spirits.

Here are a few videos from the visit as well as some photos.

Over the past several months I have been amazed how much everyone, including strangers to Melanie and I, have reached out and offered/provided support to us in many different ways.  We continue to get asked what we need or what can be done to help out, well here is a way:

A colleague of Melanie’s from Frito Lay, Ginger Rogers, has joined up with Team In Training for the 2nd time, and is training to participate in the Rock & Roll San Diego Marathon this June.  For those that aren’t aware, Team In Training raises funds to help stop leukemia, lymphoma, Hodgkin lymphoma and myeloma from taking more lives. Ginger has graciously offered to run the marathon in honor of Cutler.

Please check out her website at http://pages.teamintraining.org/ntx/rnr10/gingerrogers if you would like to learn more about how you could donate to her efforts or just to check in often and track her progress.

We are working with Ginger to become as involved as possible and to help support the team by including Cutler in the Honored Heroes program that we are still learning more about.  Naturally we will provide updates on that as we learn more, but please check out Ginger’s efforts and support her effort to raise money and awareness in any way possible.

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.