Sunday was a good day for Cutler; as you can see from the picture above.  Dr. Lenarsky continues to be pleased with Cutler’s progress.  As Aaron mentioned, it has been a few days since we’ve had to push the pain medicine button, so they may start to ween him off completely.  Hopefully, in a few days Cutler will again be interested in eating.  I think right now he still has pain in his throat so the idea of suckling just isn’t appealing.  When he cries or “talks”, his voice is very hoarse.

Mason and Aaron put together a gingerbread house tonight…hopefully we’ll see pictures tomorrow!  Here’s another picture of Cutler, reaching to get his mommy 🙂

Thanks for your continued prayers and dedication to the blog.  Additional prayers would be greatly appreciated this week as we plan to celebrate Christmas, Cutler’s first, with him at the hospital.  I would by lying if I denied being sad, as I want more than anything to be together as a family.  But I know God has bigger plans for us once Cutler is 100% healthy, I just need to be patient.

Right now I need sleep, and Cutler is showing no sign of falling asleep!

Another great day for Cutler as he woke again full of laughter and play.  I don’t want to sound like a broken record, but it seems like every day another piece of the old Cutler is restored.  This morning he started to rediscover his voice again as he sang away while playing.  He is also starting to make it longer in between naps and at times is starting to show his mischievous side as he sometimes tries to destroy everything in his path.  We were blessed with the fact that Mason was always a very well-behaved baby that never tried to get into places he didn’t belong.  I have a feeling that we are now blessed with a baby, that once home and crawling, will be trying to get into everything he shouldn’t…and I can’t wait for it to happen.  He is definitely a head strong baby that is constantly looking out for what is coming up next and what is within his reach.

Back to his recovery, this morning his platelets jumped to 34K!  Quite an odd increase considering he was at 2K the day before.  You could tell that the platelets were already hard at work as a lot of bruising was starting to fade including the blood blister on his tongue which appears to have disappeared.  Dr. Lenarsky did say that they will probably drop again tomorrow and that the sudden increase is a bit of a phenomenon that you rarely see.  He also mentioned that while we don’t see an increase in his white cells via the blood tests, the fact that he is feeling so much better is a good sign that they are possibly being generated.  He said that you usually see the recovery in the patient before the blood work, so hopefully this is a good tell tail that the sails are hoisted correctly.  As we have now gone at least 48 hours without having to press the magic button for increased pain medicine we will start to ween him off the pain meds while continuing the same for the steroids.  As the steroids do often mask the fever, there is still a chance that his fever will return, so it is a wait and see now as we continue to decrease the amounts over the next couple of days.  For now, all looks well and it is still a wait, pray, and see game.

Just a friendly shout out to my incredibly beautiful and loving wife, happy 31st birthday!  Ok, I am jumping the gun as it isn’t until tomorrow, but I figure it is late enough for me to post this knowing she probably won’t read it until the morning.  🙂

Awhile back I asked that everyone keep a friend’s daughter in your prayers and your thoughts and prayers have definitely come through.  Below is an update provided by Jason…

Hello,

As you see by the picture, our family is where it belongs…All together and at home.

Samantha got home from the hospital on October 27th, and we have been able to get things to as normal as they are going to be until her kidney transplant.  She has to get to 22 pounds before she is eligible for a transplant, and this is show she can actually receive an adult kidney and will increase her chances for survival.

Therefore, we have to plug her into a peritoneal dialysis machine on a nightly basis that performs her peeing function until she gets her kidney.  It is actually humorous, because UPS has to make so many deliveries to our house, you would swear we are running a business out of our garage, but it is just the supplies.

Samantha is also on several medications that help regulate her body.  Currently, she is getting a sodium injection and a calcium injection.  This is on top of her normal epogen, phenalbarbital and some medication for her thyroid gland.

However, going back to the beginning, Samantha has been home and is progressing wonderfully.  We are very happy to be together as a family.  As always, I want to thank everyone for all the thoughts and prayers.

Jason

After a bit of a rough night sleepwise for both Cutler and myself, he finally woke around 8:30 am with a huge smile and was ready to play.  Every day I see more and more of the old Cutler.  Everything is still looking good with Cutler, but his platelets were very low and so he received another round today and will likely get more blood tomorrow.  I tried to con the good doctor into guessing a potential date to head home, but he wouldn’t bite and said that he normally won’t tell you a date until you are walking to the car.  That is how fickle this process can be and so we will continue to take it one day at a time and be happy for the days that he is feeling good and try to minimize the days he is feeling bad.  The longer he goes with low platelets the more bruises I am starting to see and I need to do a better job of documenting them because it is quite frightening to see.  Right now, for instance, the entire top 1/3 of his right ear is black.  He also has multiple little “pin” bruises on his face and even has a blood blister on his tongue that developed today.  They don’t seem to bother him, but it is rather gruesome looking and I think I will need to have photos for when his girlfriends come over later in life.  It will be up to him to be either embarrassed or use it to his advantage.  🙂

Unfortunately Mason’s soccer game was rescheduled and we weren’t aware so we missed the game this morning.  So no photos of Mason avoiding falling on purpose.  Actually we have a deal now where if he doesn’t fall on purpose he gets to pick out a snack from the indoor facility.  Last week near the end of the game he was tripped and the first thing he said to me when he came over to the bench was that he didn’t fall, he was pushed.  He wanted to make sure to get that snack. 

The upside to missing the game is that I could go home and get a nap in before heading to the hockey game.  Mason did go to an NHL game last year, but it was in a suite with several of our neighbors and their kids so I feared that his expectations of watching the game would be too high and today would be a disappointment.  Fortunately he was very excited to go to the game regardless of where we were sitting and was very in to following the game and asking a ton of “why” questions as the game progressed.  The game was very close and I think the electricity of the crowd helped keep him keep interested.  We made it through the entire game without him asking to walk around.  He even got to see a pretty good fight early in the game and then proceeded to ask me when they were going to fight again.  I think this may have been his favorite part of the game.  The only downside is that during the game I showed him how to “hockey” fight (e.g. pull the other guy’s shirt over his head and then pound away) and so for quite a bit of the third period he kept trying to do this to me.  I promised him if he stopped, he could get me tomorrow at home.  I am hoping that he doesn’t try this on any of his friends as it will be difficult to explain.  Below is a picture of the enforcer ready to drop the gloves.

After the game we went and got some ice cream and then finished off the day with a trip to the hospital where Mason was able to look in through the window on the door to see Cutler.  He really does miss his brother and judging by the smile on Cutler’s face he misses his big brother as well.  However, after about two minutes, Mason quickly announced that he was done and it was time to go.

Not much new to report.  Cutler continues to please the doctors with his progress.  Thanks to the steroids his mucisitis seems to have cut back.  He still has a lot of slobber/mucus, but is not choking and vomiting it the way he was before.  The doctors do plan on tapering him off the steroids over the next few days and potentially the pain meds as well.  He isn’t on a high dose of the pain meds as it is, so it will be a quick road off of them.  His blood tests have shown 200 white cells the past two days, but this is virtually zero and could possibly drop to zero again without concerning the doctors.  Dr Lenarski did mention that this could be a sign that the transplanted cells are starting to grow, but we still won’t know more for another week or two.

Tonight when I got here he was in a great mood and showed a lot of the old playful Cutler from pre chemo times, but does tire quicker than before.  This doesn’t alarm us at all considering all of the medicine he takes and the fact that he isn’t eating.  I am sure the TPN bag gives him the necessary nutrients, but probably doesn’t give him the energy that his bottles used to.  The one thing new that he has started to do is give a really good strong hug.  I am not sure if it is what he intends to do, but he is quick to grab on and lay his head on my shoulder and just squeeze.  For now I will believe that he knows he is giving his dad a bear hug.

Big day tomorrow for Mason and I as he has his second indoor soccer game of the season and then we have a Stars game at 2 and then back to the hospital for me.  Plan on bringing Mason up here with me so that he can see Cutler through the window.  We haven’t told him yet, but I am looking forward to the excitement and unfortunately the disappointment when he sees that there isn’t a play room like there was in the other building.  🙂 

By the way, here is a link to Lucas’s web site for updates.  He is Cutler’s “cancer twin”.  He has been through a much rougher road than Cutler, but it looks like the transplant was a success as they did a test on the blood and his new cells are from the transplanted cells and he is leukemia free.  His biggest obstacle to get home now is starting to eat again.  Please continue to keep him in your prayers.

http://www.caringbridge.org/visit/lucasgebert

Was just looking through photos from my mother’s camera and stumbled upon this one.  Cutler is ready to start his modeling career.  🙂

Yesterday was quite the fun and busy day for Mason.  In the morning Mason and Melanie met Santa for breakfast as I was training the newest employee at the hospital…Grammy.  Once I got home and showered up, Mason was already revved up and ready to go.  At the Northpark Mall there is a Santa that has been there for the past 15 years and has had quite the following.  We got there around 11 am and received number 165.  Imagine my dismay as I looked at the number “now serving” screen that was set at 18.  The line manager told me to come back around 3 pm and our number should be ready. 

At that point I was thinking there was no way to waste four hours with a four-year old in the mall and so the picture wouldn’t happen.  So we wandered away and found a small orchestra playing away and Mason was more than happy to stand and watch for an endless amount of time.  In fact, it was me that was ready to go and find something to eat.  On our way to the food court we stumbled upon the movie theater and decided a lunch of popcorn and pizza at the movies was in order so we sat down and enjoyed the Princess and the Frog.  Pretty cute movie with great jazz music, that Mason was quick to dance to…I think he definitely got the desire to dance from his mom…at least dancing sober that is.

So by the time the movie was out it was around 2:30 and we headed back to Santa to find that they were only up to number 88.  This Santa is one popular dude.  Anyway, after hanging around and chatting up the line manager we some how finagled our way into the line and by 3:00, we had our picture with Santa.  No flirting required on my part and no need to pull the “cancer card” either.  Just pure goodness of the line manager.  The holiday seasons are alive and well!

The rest of the day was spent building a couple of lego guys at the lego store, buying some new shirts and sweaters for Mason and then just wandering aimlessly as two guys are known to do.  It was a great time to spend all of this time with Mason and the only thing that would have made it better is if baby brother was there to slow us down.  Definitely next year!

Today was Grammy’s first day on the job here on the 12th floor, and as you can see from the photo, she and Cutler had a great time!  Thanks again to my stepmom, Barbara, who willingly stepped up to help us out when Aaron’s mom had to go home unexpectedly.  I will let Aaron post tomorrow about his mom’s back.  Cutler had another good day, although he isn’t quite 100% just yet.  The doctors are pleased with his progress thus far, and we’re thankful everything Cutler is experiencing was fully expected – no surprises!  No discussion of when he might come home…perhaps we’ll get the nerve up to ask in a week or so. 

No fever and little pain, he prefers someone to hold him and read him books rather than play.  I imagine that will change in another couple of days.  Aaron and Mason had a special day which Aaron will tell everyone about as well as post a picture of Mason on Santa’s lap.  Right now Cutler is sleeping peacefully and I am hopeful for a good night’s sleep? 

Thanks for the continued prayers and comments on the blog.  This gives us the encouragement to type at night when we’d rather be resting or sleeping!  Please pray for Lucas Gebert, Cutler’s cancer twin (same type of AML, Lucas is a few months older than Cutler), that his appetite increases and he maintains good health so he can go home for Christmas.

Not even Dr Lenarski.  Cutler is either extremely inquisitive or just untrustworthy of any doctor or nurse as he will not turn his away when one is in the room.  Thus the photo above from this morning.  Actually he likes everyone, but does keep a close eye on them, especially when they have a fun stethoscope to play with.

Last night was a bit of a rough night, but not for Cutler.  At 3 am, Cutler woke up as happy as a peach and ready to play.  Fortunately I was able to get him back to sleep a bit later, but these fun new IV pumps that they have installed keep me up all night with constant alarms going off and unfortunately if I don’t get up and call for the nurse, they would just wake Cutler.  However, Cutler did manage to sleep through the alarms until a little after 8am and once again was ready to play. 

He has now gone 24 hours without a fever and today is the most energetic I have seen him in quite some time.  Dr. Lenarski, the Godfather of Pediatric Transplants (I named him that), says that it could be in part due to the steroids they are giving him, but we can’t keep him on the steroids as it is too much to ask the body to keep processing along with all of the other medicines.  The steroids were an effort to help him get over this little hump and then we will see where we go.  He also said that we could probably expect to see his fever return as the steroids are slowly withdrawn.  As for pain, Cutler is doing quite well.  He does still have the constant drip, but we haven’t had to press the button to add more too often.  He has started to get purple dots on his face that you may notice the pictures below and this is due to his low platelets level.  They are pretty much like a bruise, but should disappear as his platelets start to elevate.

That’s it for now.  Tomorrow is Grammy’s first day on the job and we are hoping that she performs to a satisfactory level so that we don’t have to fire yet another grandma from hospital duty.  A little secret, my mom actually isn’t have back issues, but was actually sent home by Melanie because she wasn’t cooking dinner enough.  Just kidding, it was actually a request by Dr. Ghisoli as he was growing concerned about her tendency to stalk by his house.  It was either her go home or a restraining order put in place.  Ok, seriously, just kidding, mom is now home afer a long car ride home and has her first appointment to figure out what needs to be done tomorrow at 2pm.

Tomorrow is also a breakfast with Santa for Mason and then I am helping him skip school for a special day trying to get a photo with the mall Santa and then lunch and a movie for the boys.  Looking forward to hitting the bars with him afterwards.  He is a real ladies man.

Here are a few photos from this morning with Cutler:

This last one is my favorite.  All bruised and smiley.   I think he has a future as a hockey player.

We got a bill from the insurance company the other day stating that we had to pay the extra amount for the private room since they did not agree to a private room.  So despite the fact that there are only private rooms in a transplant unit due to the low to no immune system required for a transplant, we now must go through the appeal process.  It’s a good thing Melanie handles these things, becaue I do not do well with stupidity and would quickly lose my cool.  I will save you all from my soap box and start working on the update of the day for Cutler…it’s a good one.