Bumps in the road

March 21^st – After our amazing celebration with the West Boynton Little League on 3/10, Cole had a pretty good couple of weeks. He was handling his twice a week chemo treatments like a trooper! However over the last week or so, we could tell that it was beginning to wear on him.

Last Friday (3/16) when Cole went to clinic for his chemo treatment they discovered that he had a fever. This required him to be admitted to the hospital after his treatment, as they needed to find the source of the fever and address it. On Sunday it was determined that he had a bacterial infection and they began to treat it with specific antibiotics.

The antibiotics have now done their job, however the infection and his chemo treatments have reduced his immune system counts to near zero. This means that he needs to remain in the hospital until his counts recover.

We also recently received word that his modified t-cells (CAR-T immunotherapy cells) will be back to Boston on March 29^th. When he gets these super cells is when the real magic happens! We don’t have a schedule to return to Boston just yet as we need his counts to recover before we can go. Hopefully his counts will recover by mid next week. If so, we will then do additional diagnostic tests locally on Friday (3/30). The results will take a day or two and then maybe to Boston sometime during the first week of April.

Today he had an MRI and MRA that were requested by his Boston doctors in preparation for his return trip to Boston. He is also still scheduled to receive a chemo treatment this Friday. In general Cole is doing ok. He is pretty tired and his appetite is not what it typically is. But each day gets a little better. He is allowed to have “very healthy” visitors and has had a few friends visit, however we want to keep this to a minimum for now.

I will continue to send these updates as we continue on his latest journey. Thanks to all of you who have been helping us so much with your thoughts, prayers, meals, rides, watching kids, raising money and so much more! You are all ColeStrong!!! We feel very blessed to have you all in our lives!!!

#ColeStrong, #LittleWarrior, #immunotherapy, #StMarysHospital, #BostonChildrensHospital, #DanaFarber

ColeMalone.org

Me and Cole at the Boynton inlet

Cole with his buds Matt & Jay

Madi, Cole,Denise and Mike

The Immunotherapy Journey Begins

March 4th - What an incredible week. It started with us flying to Boston last Sunday (2/25) morning to start Cole’s Immunotherapy journey and our other kids going to our good friends houses. On Monday morning we had several appointments at Boston Children’s Hospital and the Jimmy Fund Clinic at Dana Farber. We met with Cole’s Lead Oncologist and a few of the other Oncologists that were part of Cole’s previous battle and that will be part of Cole’s team again. We went over the long term plan for Cole in more detail and discussed what the next few days would be like. It’s difficult to express how we feel about these amazing people, but I can tell you that it reminded us why we chose to return to Boston for Cole’s latest treatment.

Monday night was very nice and Cole was feeling good. He wanted some clam chowder or chowda as they say in Boston. So we went to the Faneuil Hall Marketplace. Our good friends Art and Renee from New Hampshire drove down to meet us there. We enjoyed a nice dinner and of course Cole got his chowda. It was a fun evening, but we knew the next few days would be tough.

On Tuesday, Cole went in for minor surgery to have a port installed and a line for his Pheresis (process to harvest the cells they need for his treatment). He was then admitted to his room at the hospital for the night.

On Wednesday mid-morning they connected Cole to the Pheresis machine. Around 5 hours later they were done. Now we needed to wait 2-3 hours for tests to come back that would tell us if they got the cells they needed. Later in the evening we got word that the process was successful and we would be leaving the hospital after they removed the temporary Pheresis line. Now the cells will be shipped off to Novartis for processing. These cells should be returned to Boston in about 4-5 weeks. Finally around 10pm Wednesday night we left the hospital and headed back to the Boston House (formerly the Boston Ronald McDonald House). We had a 6am flight, so it was an early night.

We arrived at Logan airport Thursday morning to find out that our flight arrangements were screwed up, but our friends at JetBlue quickly resolved the issue and we arrived home around 11am. We were all mentally and physically exhausted.

On Friday, Cole’s new chemo plan started. So it was off to St Mary’s hospital to be seen by our local Oncology office and then to the outpatient center for his Chemo. We got home around 5pm and Cole was feeling pretty good. Later that evening he wanted to go over to our friends for a bit, so we did. This kid is nothing short of amazing.

Saturday was opening day for our local little league. This is always a fun day as around 1,000 people from our baseball community are there to celebrate the start of the season with a parade of teams and plenty of fun for the kids. But this day was extra special for two additional reasons; 1) They celebrated our 12 Year old all-star team winning the state of Florida title last summer (this team had Cole’s brother Michael on it) and 2) They honored Cole. They asked me to say a few words and then Cole threw out the first pitch. We also found out that Cole’s team would be named “Team Cole Strong” and the jerseys are super cool looking! In addition, every jersey for every age group will have a sleeve patch that says Cole Strong 28, in honor of Cole. This was incredibly meaningful to us and very thoughtful of everyone involved.

During this week there were so many acts of kindness directed our way that I am afraid to name them, as I may forget some. So we will simply say thank you to all. We could not do this without you all by our sides!!!

Cole having his chowda

Art and Renee visit us

The Pheresis begins

Cole pilots us home safely to Florida

Me and the boys and the State Championship plaque

that will forever be hung at West Boynton Park

Cole and his buddy CJ