Cole's Journey: May 2018

Wednesday, May 23, 2018

Start me up

May 23^rd – On Monday the 14^th Cole had an MRI with contrast. Later in the week we got the results and they were good. His bleed is healing nicely. This past Monday (21^st) we met with his team of doctors and discussed the plan forward. They are ready to start his CAR-T treatment again soon! Of course we are happy to hear this news; but we are also very scared at the same time. This treatment is still very new and far from perfect. But we will continue to pray and keep positive thoughts.

The CAR-T treatment includes 4 days of pre-treatment chemo and then at least 2 days of rest before they will infuse his CAR-T modified cells. The pre-treatment chemo is tentatively scheduled to start next Wed (30^th) and then if all goes well he would receive his CAR-T cells on Tues (5^th) or Wed (6^th). After the CAR-T infusion he stays in the hospital and is then watched for around 30 days, of which the first 10 days or so are the most critical.

In the meantime Cole has been enjoying Boston. Walking where we can and Uber-ing for the rest. In general he has still been feeling well. One of his favorite activities has been going to a local park and hitting whiffle balls. He has gotten to see the Red Sox on several occasions and found several restaurants that he really likes. As long as he is feeling well, we have been trying to get him out and about the city. Trying to keep his mind busy and give him a few smiles along the way. If you know Cole, the smiles generally come pretty easy! I know both my wife and I have really enjoyed this individual quality time with him.

We will be bringing his brother and sister up soon after school ends as well. This should make him and them feel better. It will also be good to have us all there during this most critical time for Cole.

Thank you all for your continued support!!!

Harvard Cole at the Cheesecake Factory

Cole hitting some whiffle balls

Wednesday, May 9, 2018

Holding pattern

May 9^th – It has been about 3 weeks since I last posted an update. We have basically been in a holding pattern with his CAR-T immunotherapy plan until his sub-dermal head bleed heals, however he has continued to receive chemo in an effort to keep his Leukemia at bay until we are prepared to move forward with CAR-T. The good news is that his blood counts look good and his Leukemia is nearly immeasurable.

In general Cole has mostly been feeling pretty well and the issues caused initially by the bleed have subsided. He definitely has his down days as well and often has to use his wheelchair to get around. The continued chemo has taken a toll, but he is staying strong and positive.

On his good days we try to keep him busy and have some fun. He was able to go to a couple Red Sox games and even meet some players. This was great fun for him and us. My good friend Ed Esgro was in town and he came to visit us. We enjoyed a fun dinner together at a place called Dick’s Last Resort where the waiters basically make fun of you and treat you badly. LOL, was interesting! We also took a weekend trip to see my Brother and his family in Cape Cod where we were treated to a tour of the area and of course enjoyed some great seafood. Cole was feeling so well this weekend that we even hit some golf balls at a local range.

This week Cole saw the Neurology team and his Oncologist. They both agree that he is doing well and the next step should be a get another MRI to see where we are at with his bleed. This will guide them on how soon we can resume the CAR-T treatment process. We didn’t get a time for the MRI yet, but I would anticipate within a week. So at this point, I would guess our best case scenario is that we are at least 2-3 weeks from resuming his CAR-T treatment plan.

Denise and I have been splitting time here in Boston with Cole and at home with our other 2 children. This is very difficult, as we both want to be in both places. But this is something we have done before and we will do again, as any parent would.

We would like to thank all that sent cards and gifts. I would guess that Cole has received over 100 cards with amazingly thoughtful and inspiring messages. Your support has been nothing short of amazing!!! Thank you!

Cole and Chris at the Nobska Lighthouse

Cole with my brother Tony and wife Liz

Chris, Cole and Ed

Cole doing the hula

Cole hitting some golf balls

Cole with a special card from soldiers

About Cole

Cole was born in September of 2004. He was one of two beautiful boys that entered our life that day. Yes he is a twin. Fast forward to a few weeks before his 2nd birthday and he and his brother Michael were at the doctors for their 2 year old check up and all looked good until the doctor said go get your finger poked (CBC blood test) and then you boys are out of here. Unfortunately Cole's counts came back unusual and the next thing we know we are at a local oncologists office and then admitted to the hospital where further testing showed that he had Pre-B ALL Leukemia. At the time we had no idea what this meant. However, soon after we became more educated on the subject of childhood cancers. We found out that this form of cancer had about an 80% chance of cure with 3 1/2 years of chemotherapy treatment. Cole finished his treatments like a trooper and our family got our lives back. Cole was able to attend school from pre-k on to just finishing 3rd grade. Along the way he and his brother started playing recreational baseball, soccer and flag football. The last 3 years they both have been playing travel baseball and Cole has been very healthy and cancer free. Now, nearly 5 years since Cole's last chemo treatment, we enter another Leukemia adventure with Cole, as a routine eye exam for the kids showed that Cole's optic nerve was swollen. The doctor told us that something must be pressing on or causing pressure on the optic nerve and because of his history we immediately did further testing that confirmed that his Leukemia did indeed return. I am writing this blog to try to keep all that are interested up to date with the latest regarding our beautiful boy. Thank you all for caring and please keep us in your thoughts and prayers!