Homeward bound!!!

June 24th - Our warrior Cole was discharged from the hospital this afternoon!!! This past Monday he first showed signs of recovery and he continued to improve each and every day. To celebrate his release, Cole wanted to go to Outback Steakhouse. So of course we obliged! Somewhere around July 7th he will be tested to see if the CAR-T immunotherapy did its job. In the meantime he will stay in Boston for a while longer and have periodic clinic visits.

July 9th - We just got the fantastic news that Cole’s immunotherapy treatment has worked and his cancer is again gone!!! Of course we still have challenges ahead, but this is the news we have been waiting to hear. Next we will meet with his medical team Thursday for further details and how we proceed from here. Thank you all for supporting this amazingly strong kid on his latest journey!!!

July 12th - It’s official, Cole’s doctor (Dr Margosian) says that he can return home to Florida after another successful battle. We have a 10pm flight from Boston on Friday night. Cant wait to be home and see all of our Florida friends!!! We could not have done it without all of your support!!! Thank you all from the bottom of our heart!!!

I also wanted to thank my employer (The Jewish Federation of Palm Beach County) for allowing me all the time I needed to care for my son. It is an incredible place to work and they truly do a world of good with the money they raise, expertise they bring and services they provide to our community. Thank you to all of my coworkers for being there by our side through all of this and for caring so much!!!

My wife Denise would also like to thank her employer (The Village of North Palm Beach) and coworkers for being so supportive.

To all our friends in the West Boynton baseball and flag football community; you have aways been there for us in a big way. Thank you, thank you, thank you. See you at the fields soon!

ColeStrong over and out!!!

A wild ride

June 20^th – On Thursday June 7^th, Cole received his CAR-T immunotherapy cells around 1:15 in the afternoon. We were surprised how little (only 11 cc’s) this bag of cells was and how quickly (15-20 mins) they were infused. We are very excited that this day had come, but also incredibly nervous and scared of what was ahead for him and us.

Thurs/Fri/Sat/Sun came and went and Cole was his normal self. His cousin and aunt were here and we all really enjoyed their company. On Monday morning, Cole began to fever. By evening his fever went very high (104) and his blood pressure was low. These were expected side effects; nonetheless they earned him a trip to the ICU. On Tuesday evening, Cole developed a right side facial palsy (weakness and droop). So Cole had a 1am MRI to see what was going on. We were frightened that he had another brain bleed or that his existing bleed had expanded. It was a long night awaiting results, but when they came in the results were good. No new bleed and his existing bleed was continuing to heal nicely. Thank god!!! However we don’t have an answer for the facial palsy. His doctors think it could possibly be a side effect of his treatment and hopefully temporary.

On Tuesday and Wednesday, Cole’s normally bubbly personality was gone. He became very agitated and demanding. He also began having severe neck/shoulder pain and pains (Neuropathy) throughout his body. He was put on some pain killers and has a pain button to push for on demand pain relief. On Thursday, Cole became incoherent, mostly sleeping and didn’t leave his bed as he was very weak.  He was in a state of delirium, periodically saying random things but mostly just screaming or grunting. Cole’s condition continued this way through Sunday the 17^th. Even though we were expecting this, it is quite another thing to live through. It was both terrifying and heartbreaking to watch. By Thursday, Cole’s fever had begun to break and his BP has stabilized. He was transferred out of the ICU and back to the Oncology floor on Saturday the 16^th.

On Monday (18^th) morning, I got a text from my wife saying that Cole said a few words. When I arrived at his hospital room a little later, Cole looked right at me. I told him that I missed him and he told me that I missed you too dad. My heart melted. I felt like a pallet of bricks was removed from my shoulders. Cole continued to become more lucid as the day and night went on. Tuesday and Wednesday continued to show improvement. Cole’s personality was back too. He was weaned off of the pain meds, as the pain he was previously experiencing was gone. Each day he gets stronger. Today, Wednesday, he began to walk a little. In the midafternoon, we got a visit from the Patriots 2 first round draft choices, Isaiah Wynn and Sony Michel. They took some pictures with Cole and Michael and presented Cole with a signed football.

We know Cole’s journey is far from over, but we feel good that he is beginning to heal and for now that is a huge relief. This week has been incredibly difficult to live through, but our medical team feels strongly that these side effects tell us that the CAR-T is doing its job and that gives us some peace.

Thank you all again for all of your support and being part of team ColeStrong!!! 

Cole resting

His CAR-T cells are ready for infusion

Part of the team

Cole Strong!

Mike, Cole and Cousin Bryce

Mike, Cole and Madi

Cole, Mike and the Patriots Rookies

The Family

Here we go

Jun 6th - Everything has gone as planned for Cole over the last 2 weeks. On Wednesday the 30th, he had a PIC line installed and was admitted to the hospital for the remainder of his treatment. On Thursday we did some further testing and on Friday he started his 4 days of pretreatment chemo. On Saturday Cole was given a Karate lesson in his room from an instructor from The Heroes Circle. The Heroes Circle (kidskickingcancer.org) teaches meditation, breathing and movement techniques found in the martial arts to empower children beyond the pain and trauma of childhood disease. He really enjoyed that! Also over the weekend, Cole was visited by his cousins Kristen and Jeff and we enjoyed some competitive card games! He really enjoyed the company.  On Monday the 4th his pretreatment chemo was complete and he is doing very well. On Tuesday the remainder of the family arrived and he was very excited to see his Mom, Sister and Brother. Some arts & crafts projects and some competitive PlayStation gaming against his brother brought lots of smiles to his face.

Tomorrow, Thursday the 7th, is the big day. Cole is tentatively scheduled to get his CAR-T immunotherapy cells between 1-2pm. The process of getting his CAR-T cells is basically a 15 or so minute infusion and then it’s basically a waiting game. He will be closely monitored in the hospital for possible side effects from the cells over the next 30 days or so, with the first 2 weeks being the most critical.

We are thankful that this new treatment is available and are hopeful that it will cure Cole once and for all. Thank you all again for all your thoughts, prayers and continued support!!!

#ColeStrong, ColeMalone.org

Michael, Cole and Madisen

Cole in front of his hospital room

Cole in his room

Me, Cole and his cousins Jeff and Kristen

Cole doing karate

Cole doing karate

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

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

More hurdles

April 17^th – Last Thursday (4/12) Cole started his pre-treatment chemo during the day and then at 7pm something went wrong. Cole started having problems forming his words and it was difficult to understand him. This lasted for a little over an hour. An MRI with contract was ordered and by 10pm we knew Cole had suffered a sub-dermal bleed next to his brain. They believe that the bleed was putting pressure on his brain and causing the speech issues. The doctors immediately stopped his blood thinners and pre-treatment chemo’s. The next day the speech issue returned and stayed. Subsequent images were taken and thankfully the bleed had not increased. We do not know for certain the cause of the bleed, but they suspect the blood thinner along with prior conditioning. This made for a couple of very anxious and nerve racking days, as we were not sure if this would require very risky surgery. Thankfully it looks as if we have avoided surgery for now.

The big picture for his Leukemia is now cloudy, as he cannot get his CAR-T immunotherapy cells until the bleed heals and we do not yet know how long this will take. So in the meantime he will receive chemotherapy to keep his Leukem 

ia at bay until such a time that we can again attempt to receive his CAR-T cells. We are told that the CAR-T cells are good for about 9 months.

In addition we need to deal with his blood clot that formed while we were still in WPB and he cannot be on blood thinners. So they have decided to remove his port, as the clot is where the port connects to his vein. Hopefully this will resolve the clot issue. He is scheduled to have it removed on Thursday. If all goes well, we will receive future treatments on an outpatient basis until the bleed resolves.

Will continue to keep you all updated as we move forward. Please note, our new mailing address for sending cards will be:

The Boston House
c/o: Cole Malone
229 Kent St
Brookline, MA 02446

#Minions, #ColeStrong

Chris, Cole and Denise

Cole in his room

Minion Cole

Setback

Apr 13th - Shortly after my blog post last night, Cole suffered a medical setback and our plan for his CAR-T immunotherapy next week is now off.  We will be continuing to test / monitor him until his doctors formulate a new plan for him. Please continue to pray for him!

Many of you have asked what you can do. At this point I would simply ask that you to mail him a card. He loves to open them and read the nice messages.

His mailing address is:
Boston Children's Hospital
c/o: Cole Malone / Room 611
300 Longwood Ave, Boston, MA 02115

Cole gets a late night MRI

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