Nov 9th - Nov 25th - Well the past few weeks have been very challenging to say the least and filled with both good and bad news.

The bad news; His sore throat and mouth sores were much, much worse than anyone had expected and he also developed a condition called VOD (veno occlusive disease). VOD is where some small veins in the liver become obstructed and cause fluid buildup. So on the 18th he had drains put into his lungs and abdomen. He still has these drains and will probably have them for a little while longer. The fluid buildup has caused some pretty significant abdominal pain and has rendered him bedridden. He is on a slow drip of pain medication (dilaudid) and has a pain button to press for on demand pain relief.

The good news: The new marrow seems to be taking hold and he is now considered engrafted as of the Nov 21st. YAY!!! His blood counts have all been very good and he probably would have been leaving the hospital (but staying in Boston for a few more months) this week had it not been for the VOD.

The doctors are monitoring his VOD very closely, as it is potentially very dangerous. There are elements within his blood tests that tell them how the condition is doing. As of today (the 25th) it looks as if these values have peaked at their highs and we have even begun to see a slight decrease in these numbers. This is what we want to see. I would guess that it will take weeks if not a month or more to completely resolve this issue, but we are hoping that the worst is behind us!

Thanks again to all for your thoughts and prayers!!!

Denise and Cole

Chris and Cole

Cole resting

Oct 27th - Nov 8th - On Mon the 27th, Cole has his Hickman line surgically implanted and we are then admitted to transplant floor for the remainder of the transplant process. If all goes well, we expect to be in the hospital for about 5 weeks. On Tues the 28th, Cole begins twice a day TBI (Total Body Irradiation). This continues until Friday afternoon. He handles this process like a trooper and is ready to trick or treat in the hospital. It is actually a reverse trick-or-treat. This means that anyone entering his room needs to bring him candy and he got plenty. The day before Halloween brought a visit to our floor from a rookie Red Sox pitcher named Drake Britton. He was dressed as Superman and visited and took pictures with all the kids in the transplant wing.

On Saturday and Sunday Cole received Cyclophosphamide, a chemo drug used to wipe out the remainder of his immune system in preparation for the transplant. On Sunday, his brother Michael arrives in Boston and enjoys the remainder of the day with him. Our good friends Art and Renee also came up Sunday and spent the night with us. On Monday, Denise's sister Michelle, husband Steve and son Bryce came for an overnight visit. Thank you all for the support. It was great to have you all here with us.

Around 1:30pm, Michael is brought into the OR for the bone marrow harvest. He is done and in his own room recuperating a few hours later. They take about 400cc of marrow, about 5% of his total marrow. Around 8:30pm, the marrow is ready to be infused into Cole. Michael is brought up to Cole's room and was able to press the start button to begin the infusion. What an amazing moment! Michael is then brought back down to his own room to rest.

Within a coupe of days Michael is feeling like himself again and on Saturday the 8th, he will return to Florida. The rest of the week went well. Cole was feeling great until about Thursday. This is when his throat began to hurt and he began to develop mouth sores. This is expected and is due to the chemo and radiation. Once his white cells begin to recover, then this pain will reside. In the meantime, pain management is all you can do. We expect this will take a week to 10 days to resolve itself. We were warned that the 6th - 14th are typically the most difficult. Cole is fully aware of all and is being his typical trooper self. This kid continues to amaze us!

Thanks again for all of your thoughts and prayers!

Cole in his transplant room

Brotherly love!!!

Cole in our home made Bat Mobile

Cole with Red Sox pitcher Drake Britton

Mike getting ready for his procedure

Mike starting Cole's bone marrow infusion

Mike, Cole and cousin Bryce 

Mike and Cole goofing around