So last night went a lot better than I expected.  Cutler went down around 8:30 and didn’t wake until 3 am and then went back to bed after a quick 2 ounces of formula only to be rudely awaken by the lab tech at 4 am ready to draw some blood.  Because of his size he required to do a finger prick instead of the heel and he did surprisingly well.  He cried for maybe a minute and then sat and watched as she squeezed more and more blood from his finger.  He was back asleep by 5 am and then we slept until almost 9 am.

Unfortunately it was determined that his central line was no longer in place and so around 2:30 this afternoon he was put under and they went in and installed a brand new line.  So now he has a brand new hole in his chest as the one from the last line could not be reused.  He went through the surgery like a champ and has been asleep since I put him down around 4:30 pm.  Hopefully that doesn’t affect Melanie’s night.  The bonus from the surgery is that we got the cute surgery gown.  Below are two pictures.  The one with the mask is not our attempt at being like Michael Jackson, but was in the elevator on the way to surgery and the second one is of us hanging out in the preop isolation room waiting for the surgery.

Apparently Mason was a bit jealous of all of the attention that Cutler was getting for having another surgery and so he decided it was time to fall in the gym and cut his head open.  I was on the way home from the long day at the hospital looking forward to a nice relaxing boys night at home when I got the call from the school.  Fortunately Melanie was already on her way to pick him up and so we met at the urgent care center.  Kind of funny that when the doctor walks in he looks at me and says aren’t you the one I stapled up last year.  Ironic that we got the same doc that took care of me from my garage accident.  Anyway, Mason is doing fine.  No stitches or staples required, just the miracle of glue.  He has a nice bump and gash, but other than that is doing great.  I suppose him and Cutler can compare scars that happened on the same day.

Tomorrow is the actual transplant process, which is just a stem cell infusion via the central line.  It will last up to an hour.  Not sure what time it will occur, but most likely around noon.  It’s hard to believe that it is already here and a bit frightening as this is the most susceptible he will be.  His white blood cell count is virtually zero and so we face the chance of infection as well as the chance of graft verse host disease.  Although we have close to a perfect match thanks to donated cord blood, we still have a tough road ahead with possible rejection, infection, etc.  Please continue to keep Cutler in your thoughts and prayers!   It should take about three weeks before we see any new cells growing from the new stem cells, so there is potential for a glorious Christmas present.

Cutler awoke this morning ready to get the day moving fast.  He started in a huge fit until I finally realized he might be hungry and he drank 2 ounces for the first time in a few days and actually proceeded to do this another two times before noon. 

After finishing his first bottle he proceeded to play a lot at his piano bench.  He loves making music and dancing away in his chair.  By the way, dancing for him is shaking his head back and forth in the no fashion.

Dr Ghisoli then made an appearance and said that Culter was looking and sounding much better than he did a few days ago which was very good to hear.  He did find quite a few ulcers/sores in his mouth and explained that his entire ingestive track would look the same and so now it is more amazing to me that Cutler felt like drinking even an ounce of milk.  As a quick side story, grandma was out stalking walking the dog passed Dr Ghisoli’s house and waited for him to appear happened upon him out front.  Such a friendly man despite grandma’s stalking that hopefully we can share a few neighborhood beers with once this is all said and done.  And who knows, Mason could add another girlfriend to his stable as he has a four-year old girl as well.  Below is a picture of our friendly neighborhood oncologist and Cutler from today.

A little later Grandma showed up to relieve me and along with her in the car was Cutler’s swing from home.  His reaction was amazing upon first site of the swing being brought in.  He literally sat up and started to reach out for it.  He was so happy when I put him in it that a smile instantly appeared from beyond the pacifier.  I was almost jealous of the reunion compared to the lack of reaction I got yesterday.  🙂

Unfortunately the day was not all warm fuzzies as it looks like Cutler will quite possibly need to have a new central line put in, which does require surgery.  For the first time they could not draw blood which caused them to fear that the lines are no longer connected and so after a couple of tries to loosen any potential blockage they had to run some dye through and then via xray they were able to determine that they lines were still attached, but just barely.  It was enough to run the final dosage of chemo this evening, but will likely need to be replaced.  Because they cannot draw blood via the lines, Cutler will have the joy of being awoken around 4:30 am with a heel prick to draw blood.  Fortunately for now he is getting some well needed rest, but it is sounding like it is going to be another long and adventurous night.  Will know more about a new line tomorrow.

On the good side, Cutler did get to spend some quality play time with Melanie as well.

Mason came home singing his song that his class will be singing at the holiday celebration.  He agreed to share a sneak preview with us…and you.

…and it feels so good to be back up here and hold Cutler.  Even better was being able to play with him for about two hours.  He was asleep when I first got here and so I held him for about 30 minutes and then all of a sudden he sat up and was ready to play.  At first I thought he just wanted to sit up, but he kept looking across the room at his new musical play bench with mirror and so we went over and he just started smiling and playing away.  He also enjoyed watching videos and pictures of Mason.

He still isn’t taking bottles, but that’s alright as it will give him less to cause vomiting.  Another day of chemo to go and then hopefully Wednesday will be a good solid day of rest for him before the transplant on Thursday.  Unfortunately I have no pictures or videos of tonight as Cutler would stop playing and just stare at the camera every time I tried to get something good.  Perhaps tomorrow.

Mason has now started to appreciate the Wii.  Fortunately he likes to play the games that at least require a little physical exertion.  The one his playing in this video is a bike race.  Doesn’t matter where he finishes, he is always a winner in his mind and my heart.

The chemo is definitely taking its impact on Cutler now.  He is no longer interested in bottles and is wanting to do nothing but be held.  Last night he had to be put on oxygen as his pulsox dropped into the 80’s, but as of this morning he was back to normal and so the oxygen was removed.  Prior to Melanie leaving, Cutler did have a fever of 102, but the doctor is undecided if it is a side effect from his anti rejection medicine or if it is an actual virus so he is going to have the antibiotics started to be safe just in case it isn’t the side effect.  Fortunately I get to spend the night with him and will be up there around 4pm and am very excited to hold and comfort him all that I can.  Will hope to get something new posted this evening after I spend a bit of time with him.

After going back and forth on showing the impacts of the chemo, it looks like it is finally settling in.  Yesterday Cutler began the vomiting and has shown very little interest to drinking from a bottle.  Despite this, Cutler is still showing some desire to play, but is spending the majority of his time being held and loving every bit of it.  Unfortunately I am still barred from the hospital, but am feeling much better and my 72 hours is up tomorrow.  I can’t wait to get up there tomorrow and just hold him close.  Fortunately Dr. Goldman was there to give him some play time with a man and the goatee…Cutler loves to reach up and feel the hair on my chin.

Hopefully Grandma will be bring back some good pictures and a positive update from today and I will have a post out later tonight.

So it would appear that the chemo is impacting Cutler as much as we thought.  Perhaps it was just his four to five teeth coming in, but today was a much better day for him.  Unfortunately I didn’t have the joy of spending time with him as I was just put on antibiotics today and am waiting for whomever is at the hospital tomorrow when the doctor gets in to discuss when I can return based on my medicine.  However, reports back from the front are that Cutler was quite playful and still has a bit of an appetite.  He did receive an early Christmas present from Grandma and Papa which is helping satisfy two of his favorite activities…music and admiring his beauty.  Below are some pictures taken by Melanie.

I hope that this finds everyone doing well and fully fed and ready bed after a long Thanksgiving day.  Ours was about what you would expect with having Cutler in the hospital.  Thanks to Fellowship Church for providing the turkey and sides.  Unfortunately I fell sick yesterday with a cold and so yesterday was the last time I have gotten to see Cutler.  So instead today I helped the neighbors fry some turkeys and Mason and I went for a bike ride and then after a late turkey lunch we fell asleep on the floor watching Land Before Time.  Yes, I could not even watch football today so this did not feel like Thanksgiving at all to me.  🙂

As for Cutler, it is looking like the chemo is starting to make its impact on him.  This morning he was his usual playful self, but as the day progressed he lost interest in playing and eating and became increasingly fussy.  His naps have even become less in time and frequency.  This round of chemo is much stronger than either of the two he has experienced to date, so it is no surprise that he is beginning to feel it.  The picture from above is from yesterday morning.  I am currently overdoing it on vitamin C and cold medicine so that I can hopefully get back to the hospital and spend some time with my baby boy as well as do my part up there to help give Melanie and the grandmas some much needed rest.

On this day of thanks I would like to thank everyone for their continued support.  I thank God every day for providing such an incredible support group from our family to our friends and to those that only know us via the blog.  Without knowing we have such a strong network of prayer and people willing to do anything asked is what helps give us strength.  An extra special thanks to all of our family that has been staying with us and helping out in the hospital as well as the family that is here locally with us and always willing to pitch in and help out.  I also am extremely thankful for having such an incredible wife and a four-year old that is being patient and strong beyond his years and most importantly for giving us a baby with the heart, courage, and fight of a lion.

Happy Thanksgiving to Everyone!

Yesterday was a day of rest, meaning no meds and so Cutler slept through the night with no issues for Melanie.  Fortunately they have put a bed in the room for us, so Melanie was able to get some decent sleep as well.  This morning they started chemo and as expected Cutler is showing no ill effects yet.  That shouldn’t start for another few days. 

What he is showing instead is an over energetic engine.  Maybe it is because we are cooped up in a small room, but he seems much more energetic and harder to wrangle than Mason ever was.  It’s a constant wrestling match with him to keep him out of everything he shouldn’t be getting into and changing a diaper is an amazing exercise of battle of wills.  Fortunately I am currently winning, but I am sure he will surpass me before you know it.

But don’t get me wrong, I am not complaining.  While it can get frustrating, it is hard to get mad at such a great smile and it is actually refreshing to see how much of a fight he has in him to help him beat this.