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