Last night was very cold as the room’s heater turned into an AC and quickly turned the room into an ice box.  Fortunately Cutler slept through all of it while they fixed it.  What you don’t see in the picture above are the three blankets underneath the one on top.  It was finally fixed around 11 pm, but is now malfunctioning yet again.  If it isn’t fixed within the next hour, we are changing rooms and I don’t care who they have to displace in order to do so.  Can’t afford to expose Cutler to this type of atmosphere.

Despite the cold, Cutler’s white cells continue to grow.  This morning his WBC is at 1500 and his ANC is at a whopping 1050.  Another day or two of this and the masks will be gone.  Once the WBC gets up above 2000 for an extended period of time, they will look to decrease the neutrogen meds to see if he can maintain the  growth of the cells.  So while we are feeling good about the growth, we still have more goals ahead of us.

Cutler has now decided that it is fun to stick his tongue out.  Not sure why as I don’t recall this being a big thing with Mason, but Cutler really enjoys it and if it weren’t for the smile that follows I would think he actually means it. 

It’s also a great increase for a WBC.  Cutler’s WBC jumped from 800 to 1200 overnight.  The ANC is also holding steady in the mid 600’s.

Cutler’s eating continues to struggle and so yesterday an occupational therapist was brought in and provided a list of activities to do to help stimulate the feeding effort.  One of those is to dip the pacifier into the food and he ate quite a bit of apple sauce this way.  However the effort to get him to drink from the bottle is still not going well, but it is something we will continue to push on.  We are working on pushing some formula, using a syringe, into his mouth when he is working away at the pacifier.  The first attempt resulted in a massive gagging reflex, very similar to when we try the bottle.  There is something about the taste that he just has a bad reaction to, but hopefully that will change as the WBC continues to increase and his taste buds return.

Nothing new today, Cutler’s WBC is 800 again, although his ANC increased a bit.  Aaron had a bad night last night – Cutler was up for a number of hours just wanting to hang out and play.  3 a.m. is not a good time for your baby to be playful!  I hope I have better luck tonight 🙂  Aunt Ellen stopped by the hospital this evening and “played” with Cutler through the window of his door.  He was very excited and she just cried! 

Can’t let today go by without thanking Adam for coming over and changing the flat on my car so my mom could get down to the hospital and provide much needed relief to my extremely exhausted hubby.  Thanks Adam!

Also, we finalized the plans for my cousin’s daughter, Kobi, to come down from Wyoming and “nanny” Cutler when he is discharged from the hospital.  Kobi recently graduated from the University of Wyoming – Go Cowboys! – and has agreed to live with us for at least 6 months.  Hush, you’ll scare her away!  Seriously, this is a God thing as we need someone so we can focus on work, and she needs money!  We look forward to adding a new family member to our household.  Now, all we need is Cutler’s WBC to increase and for him to start eating…  I hope to report higher WBC counts tomorrow.

I woke up this morning to a happy and smiling baby!

The best news is his WBC is 800 and his ANC is 560!  Great progress overnight.  Will ask the doctor this morning what the WBC and ANC levels need to be, consistently, in order to go home.  We continue to offer Cutler bottles of formula or pedialyte in the hopes he starts to take one or the other…so far no luck.  Will try more baby food today, as he seems at least interested in eating that most days.

More thanks to my mom Betty and step-mom Barbara who come to the hospital to hang with Cutler!  I don’t know how families do this if they didn’t have someone to give them a break.  Aunt Pat comes back into rotation on Sunday, gone but not forgotten since before Thanksgiving, to allow Barbara to make  her trip to NY to visit her “other” grandson, Mikus.

First things first, Cutler’s WBC was 500 today, another increase of 100 from the previous day.  He ANC jumped to 400 from 200, so we are definitely making progress.  The ANC is a measure of his ability to fight off bacterial infection and I am sure the nurses are really watching this number rise as the sooner it gets up and stays up they can start to remove their masks.  Then we will really know what they look like.  🙂

Cutler had a surprise visitor this morning from his cancer twin, Lucas.  Lucas is doing so well that he was out and about cruising the halls of the transplant unit on a scooter.  They were able to see each other for the first time through the door and celebrated their unity by slapping on the glass.  It was really nice to see Cutler interact with another baby and can’t wait for him to be in the same room with some.

Lucas was doing so well, it was decided that the halls weren’t enough and so he was sent home today!  We are so happy for Lucas and his family as they have been in the hospital since July 10th, with no return home.  While both Cutler and Lucas have the same type of leukemia, Lucas has had a much tougher battle with other complications along the way and so they haven’t been able to bring him home like we have, so tonight is the first night in almost seven months that they will all be home together.  We wish them the best of luck and pray for their continued recovery and thank Lucas for setting the path for us to follow.  Hopefully we are only a few weeks behind them.

From another great weekend with Mason, was Cutler.

Mason is now playing in an indoor soccer league for ages three to five and his first two games showed incredible improvement from the outdoor season.  He was more involved in the game, hustled more, stopped falling down on purpose, etc.  So we started off our weekend on Saturday morning for Melanie to get to experience this for the first time.  Not sure what happened, but he completely reverted back to his old self, minus the falling part.  That has remained resolved thanks to the requirement of no falling in order to get a snack from the snack machines afterwards.  I think it might have to do with the girl on the other team that stood about 5’4″ and weighed close to 200 lbs, but Mason lost all desire to mix it up.  Regardless, he still had fun and that is what counts.  As I tell him after every game when he asks if he won…”Did you have fun?  That’s all you need to worry about.”  Mason’s quick response is…”Oh yeah, we won!”.

From there we had a great family day for the three of us tearing up the garage and taking down the Christmas decorations.  Mason was very helpful by grabbing the broom and helping push the dirt around in the garage before seeing his friends running around.  Next thing you know he was the responsibility of Miles, our neighbor.  Regardless, it was so nice to have Melanie there helping me with the chores and watching Mason playing across the street with the many different neighborhood kids.  I can not wait until Cutler is home and running around right behind Mason doing his best to keep up.

After not completing the garage reorg, Mason and I decided it was time to head to the Hobbs’ household for drinks.  Red wine for me and milk for Mason.  Mason had a blast playing with the Hobbs boys and not once was there a cry from upstairs as they all played together.  I must mention that there were no cries to be heard, because we were outside on the back patio watching football, but still no cries to be heard.

This morning started off a little rocky with a tired and cranky (milk hangover I think) Mason, but a quick trip to church resolved all.  After an inspirational message and Mason’s time in children’s church we were again ready to capture the world together.  It could also have to do with the constant threat that if he didn’t improve his attitude, he wouldn’t be going to Disney Rocking Live.  Of course we could never deny him that pleasure, so off we went to cap off a great weekend.  Here is a photo of my beautiful wife and son rocking it Disney style…

The only thing missing to make this a perfect weekend, is sleeping in his hospital crib, right next to me.  Cutler, your big brother is patiently waiting to push your limits when you get home.

Here is another attempt at the actual video of the kids singing, from the New Year’s Eve post of Cutler’s inspiring of song, rather than just the audio.  It’s odd that the video worked on my home computer, but not on this site.  So we will see if this format works.  If it does, blame the first snafu on Joe Hopkins.  If it doesn’t, blame the first and second snafus on Joe Hopkins.

I was just looking through some of the photos taken over the past few days and came across these two photos that are a perfect example of the danger of taking multiple pictures within milliseconds of each other.  🙂 

Cute

Notso

Before anyone starts calling CPS, I swear the pain meds are for his pain.

Good news first…white cell count was up to 400 this morning.

Bad news…none!  🙂

Cutler is still having the occasional pains that require pain meds, but in a sick way it is a good thing that he is experiencing the pain as the staff believes this is a sign of the new marrow starting to work and the white cells are further proof.  It isn’t that often that he needs it, but there are definitely times that it is required.

The doctors have stopped one of the antibiotics he has been on and as the cells continue to grow we will be stopping the celsep, which is one of two meds to help fight off GVHD (graft versus host disease).  Over the next several weeks is when the GVHD could start to hit.  As the wise old Dr. Goldman tells me, there is no GVHD without the G.  So now that the grafting appears to be working, we start moving into the GVHD territory.  Just another milestone that Cutler will work through in his continued battle over this nasty cancer.

Cutler is continuing to enjoy eating the different baby foods that we bring him, but still no interest in the bottle.  He even likes to drink fruit smoothies from the straw, but I have now been told that it isn’t a good idea so we will stick to baby food for now.  He also continues to play hard the majority of the day, but usually by the evening the picture below represents his favorite activity.