After a few nights home with a cold, I am back at the hospital with Cutler.  Today was a very good day.  It started off with Cutler EATING some baby food for Aaron!!  This is huge, as we hope it is an indicator that his WBC should be increasing beyond the current 200!  He truly is acting as if he’s feeling very good.  He even ate applesauce for me this evening…however, he did spit up some mucus not too long after.  But hey, he’s at least interested in eating, which we’re told is half the battle.

We wish all  of you a safe NYE and an even better 2010!  We KNOW that 2010 will be an awesome year for Team Fricke, with Cutler coming home soon, cured of cancer and no permanent physical or developmental issues.  God continues to bless us with wonderful family and friends…we couldn’t have gotten this far in our journey without you!  Happy New Year!

This morning the doctor came in and was very pleased at the blood work.  The white cell count was at 200 and the ANC was around 156.  I was a bit surprised at his exuberance as Cutler had a count of 200 about 10 days ago and asked if he was being positive to make up for making Melanie cry yesterday.  🙂  He said that he does think this is a sign that the graft is starting to work and we should see further growth over the next week.  Personally, I am holding off a bit as a skeptic considering we have had these counts before, but I am being a positive skeptic and patiently waiting.  Thank you to everyone for their continued comments, thoughts, and most importantly the prayers.

As for Cutler’s other progress, he continues to shine more and more every day.  He has also become more and more mischievous as the days progress.  He woke with a huge smile at 6:30 and I couldn’t just make him lie in his bed and so we played and played and played until Grammy got here to sit with him for the day.  His personality just continues to shine and he is really charming the nurses here as much as he did on the 6th floor.  One of his Christmas presents is a basketball hoop and so we have been working on his game…unfortunately he prefers to hang on the rim.

Still no white cells and we are now seeing how overly optimistic the thought of him coming home the first week of January was.  That is definitely no longer in our future, unless some miracle happens overnight.  The doctors are trying to mask it the best they can, but you can see that they were expecting to see something by now. 

They do say not to worry, that every baby is different and that we shouldn’t start to worry until we get to day 42 or higher.  Dr Goldman did increase the neupogen to twice a day from once a day in the hopes that it will help the stem cells grow quicker.  Some good things to mention are that Dr Weinthal did see some white cells under the microscope a week ago, so we know there is something.  It is possible that any white cells he is generating are going straight to fighting any potential infections as well as helping him recover from the extreme chemo required for the transplant.

Cutler still is not eating and showing zero interest in the bottle.  I did manage to get him to keep it in his mouth for about 30 seconds, but did not try to drink at all.  In fact, he started to gag and he immediately starts to spit when you put the bottle in front of his mouth just like he would when the medicine would come.  They assure us that it will change when the white cells return.

I know that we have been preaching patience, but sometimes it is extremely difficult to “practice what we preach” and I think it is finally starting to get to us.  However, that being said, we will push on knowing that the white cells will come when they are ready and that Cutler will win this fight.

Here is a  video of Cutler taken this afternoon, playing with a new toy (from Aunt Becky, I believe).  He seems to be feeling pretty good today, aside from vomiting a couple of times.  His platelets still haven’t begun to increase just yet, but that will happen soon!  We’ve begun trying to feed him a bottle every day but he has yet to eat.  Again, the increase in white blood cells will “trigger” the desire to eat, so we know that will come in time.  As we’ve mentioned throughout this ordeal, patience is key.  So in addition to praying for Cutler’s full recovery, we could certainly use extra prayers for patience.  God is Great and we continue to pray He lays His healing hands on Cutler and restore him to full health.

Aaron and I have both mentioned the new IV pumps.  I’m attaching a picture so you can see just how large, confusing and intimidating they can be.  I stress large because this room is not big to begin with, and with this behemoth to push around, you can only imagine the daily frustration, especially when they beep non stop!!

And here’s one more of Cutler today.

Bad angle, he doesn’t really have that many chins!

Was just looking through some old videos and here is one of Mason showing some of his original moves at the Turkey Trot 2008 with his best buddy, his cousin Hunter.

And here is one of Mason’s guitar prowess…

And finally one more where Mason shows how to get the groove on with the Doyle girls back before he was two on a vacation to the beach…

Looks like the video processing for wordpress is starting to work again, so below are a few more videos of Cutler.  One is him wishing everyone a very Merry Christmas…interrupted by a diaper change.  The other is Cutler enjoying his piano and flashing his trademark smile.  By the way, these may take awhile to show, as I am still not sure how long wordpress will take to process them.

So Christmas has now come and gone and it was as difficult if not more difficult than expected.  I am sure it was much more difficult on us than Cutler, but very difficult just the same.  Melanie and I were both able to spend the majority of Christmas Eve with Mason with Melanie sleeping at the hospital and having to miss Santa’s presents for Mason on Sunday morning.  We were however able to spend the majority of the day with Mason together as well which was very nice. 

Despite being surrounded by family, it was a bit depressing not having the entire family together and so it truly didn’t feel like Christmas to me.  But at least Mason had a very good time, although I can start to see how much he is really missing having his baby brother at home and a bit more of a normal situation.  I think he would gladly give up sleeping with mommy and daddy on our alternate nights just to have Cutler at home.  However, Mason was very pleased with his gifts including some roller skates which he is determined to skate outside with just like his good friend Avery.  No matter how hard I try to get him to practice inside on the carpet, where the falls are a bit easier, he constantly insists he is ready.  So I did take him out and I am surprised his elbow isn’t out of socket with all of the falls and catches by me.

Cutler also received some presents that Melanie brought to the hospital for him to unwrap.  Unfortunately I didn’t get to see how much he enjoyed the sound of the paper, I can attest to his love for the toys as he is still playing very hard whenever he is feeling good.  Here are a few of the photos…

Now on to the current update for Cutler.  First of all, I apologize for taking a few days off, but every now and then we need to enjoy the holidays as well.  🙂  Cutler is still doing fairly well and the doctors are very pleased with his progress.  He is completely off pain meds and steroids as well as one antibiotic.  Unfortunately it appears that he is experiencing some pain and his having trouble sleeping through the night…at least as of last night he was.  He is also sneezing and coughing a lot, which I believe is still a bit of mucisitis residing that was successfully masked by the steroids.  Today he even had one of his vomit/spit up moments, which the nurse believes was clotting left over from the major mucisitis. 

We are hoping that the pain is a sign of the bone marrow starting to grow as they often see pain from the patients prior to the white cells returning, which the doctors think should happen within the next five days.  After the great increase of platelets a few days ago, it did drop down to 7K today and so he had another transfusion, so hopefully we will see another big increase tomorrow.  Dr. Weinthal did say that he expects to do transplants twice a week until the marrow is fully grafted and grown, so this is not a concern right now.

Cutler is still not eating, or for that matter even showing any interest in the bottle aside from using it as a toy.  In fact, when the nipple is put close to his mouth he has a gag reaction where he starts salivating and spitting almost immediately.  Dr. Weinthal did say that it should all change once the white cells are back up. 

So, to summarize at a high level, we are simply waiting for the white cells to come back.  This is a long waiting game and perhaps we were premature with our optimism a few days ago but I still believe we are progressing along nicely.  Most of the nurses have even commented that his behavior is ahead of schedule for what they see in most babies so it is refreshing to hear this, but again it is just a waiting game and patience is the key here.  We do not want to rush nature.

Below are a few more pictures from Christmas.  And the photo of Melanie and I in front of the tree, is from church.  We couldn’t fit a tree like that in our house without cutting a hole in the ceiling.

This picture is of Mason and his Zhu Zhu hamster.  Apparently they are big item to find this year that only Melanie knew was a big item as she stumbled upon it at the store.  Mason’s reaction was classic, in that he apparently missed the commercials on it and just kind of looked at it and moved on until we made him pose for a picture, but he has played with it quite a bit since.

Merry Christmas everyone!

I have heard from several different people that the videos are gone and it looks like there is an issue with wordpress.  I am working with them, so please be patient.  Being patient is the same thing I am trying to teach Mason right now, but I am failing miserably as he is calling for me to go play baseball on the Wii.  So a Cutler update will have to wait for a bit.  🙂

This morning Dr. Weinthal was very excited to see that after his platelet transfusion from yesterday, Cutler’s platelet count was up around 90K.  We had a huge spike to 34K a few days ago, but to spike to 90K was absolutely amazingly good news.  Also, yesterday Dr Weinthal mentioned that he looked at the blood work that contained a few white cells and so far all of the cells look to be good cells.  It’s hard to not get excited with all of this good news, but we need to be sure to stay grounded as his immune system is still very limited.  That being said, there is a potential that Cutler could be home the first week of January if he keeps going at this pace.  The plan is to now have Cutler off pain meds and steroids by the weekend and start to eliminate the many number of antibiotics he is on.  He has already stopped one of them as of today.  Also, by next week there will probably be an effort to get Cutler taking his meds orally.  This should be interesting and completely non pain free…for us.  🙂

Here is a video from this morning as Melanie and Cutler were playing peek-a-boo.

Cutler had his transplant 19 days ago and as you can see from the video, he’s is doing wonderfully!  Before the transplant the doctors told us we would be in the hospital for 30-60 days, so we still have a way to go.  Once Cutler’s white blood cell count increases, we’ll have to get him off of the TPN and interested in eating again.  He has to be able to eat and take medicine orally before he can go home.  Since he has the tendancy to hit every milestone without a problem, we anticipate he conquers food and meds!

Can’t remember if we’ve mentioned being assigned PICU (pediatric ICU) nurses at night.  Well, we’ve been assigned a few and let’s just say, we haven’t had the best experiences.  Although these nurses are qualified, no doubt, there’s just something missing when they come to the Bone Marrow Unit.  A few nights ago I had an issue because the nurse didn’t seem to know how to operate the IV pumps without needing another nurse to come into the room for assistance.  Needless to say, that did not invoke much confidence!  I spoke to the Unit Supervisor and kindly requested that we NOT be assigned a PICU nurse when they are short-staffed.  He committed to doing his best.  Wellllll, 3 nights later, last night, Aaron had a PICU nurse.  He gave her the benefit of the doubt once the charge nurse introduced them and gave the ground rules.  An alarm went off at 3 a.m. (no big deal, happens throughout the night) but when Aaron checked on Cutler, he was “swimming in his own urine”!  Aaron had the charge nurse come in and they had to change the little guy’s clothes.  The PICU nurse said she changed it at 2 a.m., which seems impossible that he would be so wet just an hour later.  Anyhow, she apologized and was taken off Cutler’s assignment for the remainder of the night.  Tonight, I have Miriam, who was the charge nurse last night.  We’re hopefully that that was our last PICU nurse as they just don’t seem to click with us!  And I would say my hubby is home in bed catching up from last night, but he is at the Mavs game.  A well-deserved night off.

I had a great birthday yesterday, as great as turning 30 can be 🙂  Aaron and I had a yummy sushi lunch then a little shopping.  My mom took me, Mason, Ellen, Austin and Rick to dinner at Patrizio’s.  Another wonderful meal.  Yes, I need to get back to the gym after all this eating!

As I mentioned above, Cutler is doing great.  His energy level increases so much every day.  We played on his mat with toys for a good 2 hours, before I finally got him to sleep by rocking him in my arms…can you say heaven?!  I pray he continues to improve despite the reduction of pain meds and steroids – no setbacks, please.  Each day the doctor tells us basically the same thing – they are very pleased with Cutler!  I’ll take the status quo any day.