No Pain Like Your Child’s Pain

Unfortunately Cutler is still in a lot of pain from the mucisitis and cried out several times throughout the night to let me know.  On top of that pain, he is also having to endure the pain of having his dressing changed multiple times since yesterday as the blood is still not clotting.  They say that his platelets are alright, but he will be receiving more soon and he was also provided with a medicine called amicar that should help in the clotting process.  With the most recent dressing change they have applied some more surgiseal and gauze with pressure prior to applying the covering so we are hoping that with the pressure and new gauze it will finally clot.

Just watching him go through the pain he is makes me realize that there is no pain as great as that of your children.  It breaks my heart every time to watch him go through the dressing change especially when they clean the area and you can tell the alcohol wipes are burning him.  But amazingly enough, Cutler quickly recovers and reminds me that pain is only temporary.  Regardless, we are waiting on a pump to have a fentanyl drip set up so that we will have control, with the friendly button, on how often he receives the relief.  Below is a picture of Cutler showing his strength not ten minutes after one of his dressing changes.

The Transplant (Updated)

Sorry for taking so long to get the update to yesterday’s version, but I was without the photos until now.  The transplant went smoothly and so far Cutler is showing zero side effects.  We were told we could expect to experience some chills and/or fever, but so far it is looking good.  He is having some pain issues with the sores in his mouth, but this is from the chemo that he had to endure leading up to the transplant. 

Also, as he had to have a new central line put in, we are experiencing some excessive bleeding from the site and have had to change the dressings twice today.  When I came in this evening it looked like it was still bleeding, but they nurses assured me that what I was seeing is the clotting in action.  Apparently they applied a type of wrap that helps create a fiber sheethe to encourage the clotting and effectively create an artificial scab.  Because his platelets are so low, he received a transfusion today, he needs help getting the bleeding to stop.  I am praying that tomorrow morning when we wake it will be all clotted up and we can focus on the other major tasks at hand, like avoiding an infection.

The transplant itself, was rather anticlimatic.  It was pretty much a blood transfusion as you can see from the pictures below.  Not even a doctor to be seen for the process.  It was just mom, dad, Cutler, and the amazing nurse Cari.  It lasted maybe a bit more than an hour and Cutler slept through the majority of it.

Now everything is in the hands of God as we tread across some pretty thin ice in waiting to see if the stem cells are accepted and begin to work.  In the interim Cutler has zero ability to fight off infections as well as experiencing graft verse host disease (gvhd).  He is taking medicine to help his lack of immune system as well as to deter the gvhd.  We should hopefully see some productivity from the new cells within three weeks time.  Would make for an incredible Christmas present to know that they are indeed working and to see some progress with his white cells.

Below are just some random pictures from the transfusion, including Cari modeling the latest in cord blood.  Thank you again for everyone’s continued thoughts and prayers.  Cutler is strong and God is great!  With the two of them combined and everyone’s continued support we will beat this for good!

The Transplant

The transplant is now under way and as you can see from the photos it is rather anticlimatic. It is much like a blood transfusion and the stem cells are like homing pigeons, but cleaner. They just simply know where to go. Cutler is so excited that after giving the thumbs up he went to sleep. 🙂 Will post more later when I can get to the computer. Thank you everyone for your continued support and prayers!

Day Of Rest, Not So Much

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.

Final Day of Chemo

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.