It's cold up here!!!

April 12^th – We arrived in Boston over this past weekend and its pretty cold!!! On Sunday night we were treated to a Bruins Game. Cole watched the game from a luxury box, fist bumped the players between periods and met Bruins Player Brian Gionta after the game. Brian spoke with Cole and presented him with his game used stick which he had signed for Cole. It was an incredible night.

On Mon the 9^th, we went in to the Jimmy Fund Clinic at Boston Children’s Hospital for some basic tests and we also met with his Oncology and Immunotherapy lead doctors. The lead doctors again reviewed his medical history, discussed the plan of action going forward and also had some treatment paperwork for me to sign. After that we had some tests scheduled for later in the day, so we made a quick lunch trip to the Faneuil Hall Marketplace to get some of Cole’s favorite Clam Chowda and my favorite lobster role.

We had Tuesday off, so we made a visit to the New England Aquarium and after a trip to the North End for some Italian food followed by a visit to Modern Pastry for some dessert.

The plan called for Cole to come in for more tests on Wednesday during the day and then get admitted into the hospital. On Thursday we would start a 4 day regimen of pre-treatment chemo, then 2 days rest and then get his CAR-T cells. If all goes as planned, he will get his cells on Wed, April 18^th. So far we are on schedule.

Will send another update as things progress.

Cole and his chowda

Cole with Brian Gionta

Cole and I at the New England Aquarium

On Our Way North

April 7^th – It has been a rough couple of weeks. After being released from the hospital for a bacterial infection, Cole was home for just 3 short days before we were back in the Hospital again. This time his left arm had swelled up, so we rushed him back to the hospital to find that he had a blot clot. He was again admitted to the Hospital and put on a blood thinner. While in the hospital he began to experience Neuropathy (pain in his joints) and cramping in his arm/hands. He had never experienced this before and it was quite painful. For a few days it took everything he had just to get up and take a few steps. As a parent, these are some of the most trying times.  Our situation was far from my hoping that we would be able to enjoy a few weeks of quality time together before returning to Boston. This also delayed our trip back to Boston by a handful of days.

On Wed, April 4^th the pain began to subside and Cole was able to start physically therapy. On Thursday evening we were able to bring him home. Cole was again in the comforts of his own home and of course we treated him to some of his favorite foods! Cole continues to amaze me with his ability to rebound from such things and still manages to stay positive through it all. Those of you who know him understand exactly what I am talking about.

During our stay at the hospital, we received his labs back that tell us the current status of his Leukemia. The tests show that the Leukemia in his CNS and Bone Marrow are nearly non-existent.  The CNS tests show there is no measurable amount and the marrow shows 0.04%. While this is good news, we also know that left untreated that it would rapidly return. Nonetheless this is good news for the remainder of his treatment, as we are told that the less Leukemia in his body when receiving his cells back the better.

Sat, April 7^th, Cole is heading to Boston tonight. On Monday he is scheduled for some additional tests at Boston Children’s Hospital and then receives chemo for the remainder of the week in preparation to receive back his CAR-T modified cells. If all goes as planned, he should be getting his cells infused on Monday, April 16^th. As I’ve stated before, this is when the magic happens. These CAR-T cells are Cole’s own T-Cells that were modified in a lab at Novartus to kill off the Leukemia cells in his body. This process is called immunotherapy, a new and innovative approach to cancer care that has shown great promise for patients who typically wouldn’t have any good option remaining. Cole will be about the 250^th kid in the world to receive this particular treatment.

While we are very happy that this immunotherapy option is available to Cole, we are obviously very scared for him/us. We have great confidence in our medical teams both locally as St Marys/Palm Beach Children’s Hospital and Boston Children’s Hospital/Dana Farber Cancer Institute; however our greatest comfort lies in this incredibly strong young man who has conquered too many battles already in his short life. He has endured more than any child, or adult for that matter, should ever have to and has come out on top with a smile that lights up the room. He has fought too long and too hard for us to believe that anything but success is not an option. So off we go to battle and conquer this horrible illness once more!

I would be remiss if I did not thank all of you who have been right there by our/Cole’s side with thoughts, prayers, supports and so many random acts of kindness! We are all Cole Strong!!!

#ColeStrong, #LittleWarrior, #Immunotherapy, #StMarysHospital, #PalmBeachChildrensHospital, #BostonChildrensHospital, #DanaFarber, #Novartis

 ColeMalone.org

Almost ready for his procedure

Brotherly love

Cole enjoying his favorite breakfast - 

Banana Nutella Crepe

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!