Jan 19th - Feb 16th - It is now now day 105 (105 days since his transplant) and Cole is continuing to improve. He was released from the hospital on Jan 24th and has been staying in our Boston apartment. His battle with VOD (veno occlusive disease) has now largely resolved and we are hoping to get a release date to return home to Florida within the next 2 weeks. He will continue to go to clinic for checkups here at The Jimmy Fund Clinic until we return home and then we will have regular checkups at St Mary's in West Palm Beach. We will periodically need to bring him back to Boston, however we have not been given that plan as of yet. 

Cole's battle is far from over, however all is looking good so far. He is beginning to regain his strength, however his appetite is still lagging far behind. When he returns to Florida he will need to stay in isolation for a few months since the transplant wiped out all of his immunizations and his immune system needs to rebuild. We should be able to re-immunize him after about 6 months.

Cole wanted to see some snow and we certainly did get some! This winter has caused us some challenges and we welcome our return to the sunshine state. 

We are so very glad we chose to come to Boston for his treatment. The hospital staff was amazing! Some of them went so far above and beyond their jobs. There are no words that can say how appreciative we are of them and we hope that we can stay in contact with some of them into the future. Cole definitely felt the love by all. Cole sat in a chair in the hall so frequently that he was deemed Mayor of the floor :)

Again thank you to all for all your support,thoughts and prayers through this long and trying journey!

Cole leaving the hospital

Cole near a snow bank

Snow against the 1st floor of our building

Showing his Viper Baseball pride!

Cole chilling in our apartment

Ready to go home already!

Dec 14th - Jan 18th - It is now now day 75 (75 days since his transplant) and things are looking up. Cole has continued to battle VOD (veno occlusive disease) since November, however the last week or so has shown great improvement. Cole now has all of his drain tubes removed and is having all his remaining medications changed to oral in preparation for his release from the hospital. If all continues to go well, he may get released from the hospital at the end of this week. We will still need to remain in Boston for a while longer and bring him into clinic 2 or 3 times a week, but his release from the hospital would be welcome news.

His oncology numbers continue to look good as well. This is a good sign that the transplant is working. Hopefully if all continues to go well, we will be able to return Cole to Florida by the end of February.

Thank you to all for all the thoughts and prayers through this long and trying process!

Cole and Denise in front of his room

Nov 25th - Dec 14th - Cole has been battling VOD (veno occlusive disease) which is a side effect of all the chemo he has received for about a month now. Currently his blood counts are showing that the VOD has greatly reduced, however it has not translated to Cole feeling any better until the last couple of days. His abdominal drain is still in place, however he was able to have his chest tubes removed about a week and a half ago. 

The last 2 days have been encouraging, as Cole has wanted to leave his room (in a wheel chair) to go to the resource room on the floor or to simply pace the hallways. This is the first time in a long time that he has wanted to leave his bed. This is an encouraging sign, however we are clearly not out of the woods yet as he is still retaining abdominal fluids. VOD is a slow disease to cure and we need to continue to be patient with it. We were hoping that we would have Cole out of the hospital before the holidays, but it is now looking like that will not happen. Hopefully he will be past most all of the VOD over the next few weeks. 

We are now at day +42 from his Bone Marrow Transplant. His Oncology Blood Count numbers all look solid and have seen continual improvement. This is very good news! Day +100 is when doctors give your their full assessment and generally allow you to return home. Day +100 falls in mid-February for Cole. 

Thankfully we will be bringing the kids up for the winter break and we will have the entire family together to enjoy the holidays. The kids are hoping for a lot of snow :)

Thank you all for your continued support. It is so very meaningful to our entire family! 

Cole painting a Christmas tree

Cole and Dad selfie

Cole, Mom, Santa and an Elf

Cole in front of the hospital Christmas tree

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

Sun, Oct 2nd - Sun, Oct 26th - Cole received his last dose of Depocyt Chemotherapy and his CNS and bone marrow were again tested. Thankfully both are still clear! The remainder of the month was full of testing in preparation for a bone marrow transplant that is scheduled to take place on Nov 3rd.

In general Cole has been feeling very well. When his counts have been up, he has been able to have some fun. We did the Fenway Park tour, he again went to Faneuil Hall and went to a New England Patriots game!

His brother Michael and sister Madisen took a long weekend to visit Cole as well. I hadn't heard Cole laugh so much in many months. It was very heartwarming to see then together again.

Last week Cole received Cranial radiation because the doctors want to make sure to rid him of any un-measurable remaining Leukemic cells in his CNS.

This coming week he will have a Hickman line installed on Monday. Then he will receive TBI (Total Body Irradiation) Tuesday - Friday. Saturday and Sunday he will will receive Cyclosporine. This is to basically kill off his immune system and prepare him for the transplant.

His brother Michael (the Bone Marrow donor) will fly up on the weekend before the transplant and on Monday will donate his marrow. Michael will probably only need to be in the hospital for a day or two, but we need to be prepared for him to be in for up to a week. So he will probably stay the week no matter what.

Once the transplant takes place, Cole will need to be in Boston for about 100 days. The first month or so in the hospital and the next 2 months he needs to be nearby.

We are obviously not out of the woods yet and are still rightfully nervous about this process. I am sure sure we will be feeling better about things once we are about 3 weeks into the transplant process.

We are so very thankful for all who have been helping us though this journey and for all the thoughts and prayers!

Cole at the hospital

Cole and Denise at the park

Michael, Cole and Madisen at Fenway Park

Denise and Cole at the Patriots game

Cole with the Patriots Cheerleaders

Fri, Sept 19th - Wed, Oct 1st - Before I get into the last couple of weeks, I wanted to let all know that we got word on Wednesday, Oct 1st that there is no sign of Leukemia cells remaining in Cole's CNS. This clears the way for a bone marrow transplant for sometime within a month or so. This is the news that we have been waiting for!!! 

Now for the last few weeks: We are now settled in at our friends house and getting used to our new surroundings. They have a beautiful 90 or so year old home in a very nice Brookline neighborhood. It is just a short walk to the local Shaws/Star grocery store and a number of local restaurants. 

We have appointments on Mon & Tues at the doctors to check his blood counts and other. On Wed the 24th Denise returned home. Before she flew out, we all went to Faneuil Hall/Quincy Market for some lobster rolls, clam chowder and other great food. Then we took a walk over to the North End for some goodies from Mike's Pastry and Modern Pastry. 

Denise returned home and our kids are back to their normal routines. Meanwhile, Cole and I are exploring the local Brookline neighborhood. We really like this one restaurant called The Publick House and ultimately wind up going their 4 or 5 times. They love Cole there and offer him a job, LOL. The last time we were their, they made a special order Root Beer Float for him. This was very cool, as they actually went across the street to get the ice cream for it.

We are really enjoying our time in Brookline and getting to know Fern and Jack the owners of the house where we are staying. It have been a pleasure staying there, however it has been 2 weeks and we need to secure our own apartment. The rental market is tight in the area near the hospital, but ultimately wind up finding a nice one bedroom apartment that is just under a 1/2 mile from the hospital. It also happens to be about 2-3 block from Fenway park, so there is plenty of life around here.

We moved in Wed, Oct 1st and shortly after we arrived, we received the great news about Cole from his doctors. After doing the happy dance and notifying many. Cole and I went out for a nice dinner!

Stay tuned as our adventure continues!

Cole after being notified that his CNS is free from Leukemic cells 

Cole with me and his cousins Nick and Jeff

Cole gets cool Johnny Damon gifts

Cole enjoying a root beer float

Cole and I celebrating the great news