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 

Round 3

Feb 22nd - We now have a plan. Cole will be going to Boston Children's Hospital/Dana Farber Cancer Institute to receive a CAR-T immunotherapy treatment called Kymriah to treat his Leukemia. This process involves taking Cole's own T-Cells and having them modified in a lab to become Leukemic cell killing warriors. We will be flying up this weekend and will start meeting with doctors and doing some prep on Mon and Tues. On Wednesday they will harvest Cole's T-Cells and ship them off to the lab at Novartis for processing. We will return home while the cells are being processed. The cell processing takes approximately 4-6 weeks. During this time, Cole will continue to receive Chemotherapy locally at St Mary's in order to reduce his Leukemia cell counts and to prepare him to receive his modified T-Cells back. Once his cells are returned to Boston, we will return as well and Cole will have his modified cells transfused back into him. We will need to stay in Boston with him for observation and testing for 4-6 weeks after the transfusion. If all goes as planned, these new cell will kill off the bad cells and hopefully he will again be cancer free!

In the meantime Cole has had 3 spinal chemo treatments locally, with a 4th coming tomorrow. The treatments are outpatient, so he can be home. In general he feels pretty well, however the chemo is wearing on him a bit and understandably is feeling a little tired. He has been able to get out some and was able to see his flag football team play its last couple of games. I am sure he would have rather been playing, nonetheless it was good for him to get out of the house.

Many of you have asked me how we knew his cancer had returned. On Friday, Feb 9th we received a call from Cole's school saying that he wasn't feeling well and was in the nurse s office. When we arrived at the school they said he was now showing signs of a stroke and they had called 911. He was rushed to St Mary's hospital and he had an MRI and we were told that he had a stroke. They then wanted to do an Angiogram and an MRI with contrast. The neurologist did not see a clot, but again was convinced Cole had a stroke. When Cole awoke from his anesthesia he was no longer showing signs of a stroke, however he was admitted to the PICU. His blood test showed no cancer. The next morning we did a Lumber Puncture and it was determined that his Leukemia had returned in his CNS (Central Nervous System). After this test, the doctors now felt that the pressure from his CNS relapse had caused a seizure and not a stroke. On Monday they tested his bone marrow and thankfully that showed clean.

Again, thank you all for your support! I will try to keep you updated throughout Cole's journey in conquering his Leukemia once and for all!!!

Cole relaxing

Cole with his brother and friends

We are again heartbroken to find out the our son Cole's Leukemia has returned. This will be the third time that he has battled this terrible illness. He has already endured many years of chemotherapy and has previously had a bone marrow transplant.  This time we will be trying a newly approved treatment called immunotherapy. Currently we are being treated at St Mary's Children's Hospital in West Palm Beach, FL getting some chemo for his current situation and then our plans are to either go to Boston or Philadelphia for the immunotherapy treatments. I will post more photos and info as we move further along. Please keep us in your thoughts and prayers as we prepare to battle this illness one more time!

Thank you,
The Malone's

Feb 17th - It is official, Cole is returning home to Florida on Sat, Feb 28th. Generally he is feeling pretty well, getting stronger and incredibly excited to be going home, as are we. We have been in Boston with him since July and count our blessings every day that we made the decision to bring him to Boston Children's Hospital. 

Their are way to many people to thank individually, so for now we will simply thank you so very much to all who supported us through this crazy journey. Without your thoughts, your prayers, your kind words and assistance with our other 2 children, this would not have been possible for us. Your donations allowed us to fly back and forth countless times, have an apartment near the hospital and other important resources and allowed us to provide Cole with everything necessary to get him both physically and mentally well. 

Cole's battle is far from over, however he is definitely heading in the right direction!

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