Charlie Capalbo - Be Strong!
Charlie has leukemic cells in his spinal fluid which requires an aggressive attack of intense chemotherapy and a bone marrow transplant. The chemotherapy will take 2 months and is intended to get him back into full remission as quickly as possible. Once fully in remission, he will undergo radiation on his spine and brain for extra protection. Then the bone marrow transplant prep will begin.
For his specialized treatment, Charlie has just entered Boston’s Dana-Farber Cancer Institute, where he and his parents will live for approximately 6 months. Unfortunately, this will be extremely difficult for them financially given the extraordinary costs and major impact on their income.
Please share this message on social media and pass it along to your family and friends to increase the support for Charlie and his family.
Thank you for your previous and ongoing support!
For more information: firstname.lastname@example.org or 203-521-1778
Charlie Capalbo is a close family friend who was diagnosed with cancer near his heart and lungs in March 2017. He is a wonderful young man who had just completed a great season as the goalie for the Fairfield, CT high school hockey team.
His official diagnosis is Non-Hodgkin's lymphoblastic lymphoma T cell Stage 3. At that time, it was not in his spinal fluid (brain) or bone marrow. While Charlie was facing an extremely long and difficult course of treatment, it was treatable and it is more importantly curable. The original treatment plan was 32 months of chemotherapy. Initially, it was daily for a week, then 2 times a week for 8 1/2 months, and then once a week for year and a half.
Despite many extremely difficult side effects and setbacks, Charlie battled through it all and made enormous progress. He had just started at Fairfield University and was living on campus. College is now on hold as he begins his next battle.
If there’s one thing you’ve probably noticed in this update, along with all of the updates my mom and my aunts Becky and Lisa have posted over the last two years, it's the constant theme of “we deal with really hard things” mixed with “wow, we are really lucky because it could be so much worse”. A great friend sent us an article written by Mary Beth Collins on The Coalition Against Childhood Cancer (CAC2) website that summed it all up perfectly. Below are some excerpts from it that really hit home:
There are ongoing challenges of survivorship. There is real heartache, real worry, real exhaustion in the day-to-day living of post-treatment. I suspect many are at a loss to what to say to that reality. I also suspect many family members and friends have an emotional need for the fight to be over, already so exhausted from months or years of worry from the unstable nature of childhood cancer living.
A survivor commented on the duality of gratitude and the challenge of lifelong side effects as simply as I’ve ever heard it: “I often say ‘the good news is I’m a childhood cancer survivor; the bad news is I’m a childhood cancer survivor.’ Grateful to still be here, but it’s sure not been an easy journey.” When we listen to our childhood cancer survivors, we learn. The gratitude is real. But so too is the challenge.
As always, I am grateful to the many of you that care…that reach out, that help and that ask how I/we are doing. I am constantly touched by the generosity of our family, friends, neighbors and community. Thank you for helping us through – I hope you all are having a good summer!
2 parts due to posting size limitations.
So many of you have been messaging and asking me and my parents for an update so here it is…
The number one question seems to be “Why is Charlie in a sling?”
Great question and I wish I had a great story! I fell in the shower on Father’s Day, which made for an eventful early morning, as I had locked the bathroom door on autopilot while everyone was sleeping and I was unable to move from the fall. An EMT visit, a slightly broken bathroom door, a small cut on my foot, and a dislocated shoulder served as solid reminders for me to slow down and not forget what I’ve been through, and that I’m still more fragile than I’d like to admit. I was really lucky to have been able to protect my head during the fall. Honestly, several days before that I fell in my kitchen while standing completely still and chatting with my mom. My knee and/or ankle just gave out and I went down with no warning. Fortunately, no injury on that one…just that constant reminder from my body that it’s been through a lot and will take a lot of time to recover.
Although I’ve weaned off of many meds, by normal standards I’m still on A LOT of meds. My dad can often be found in our kitchen with his gloves on, spreadsheet in hand, preparing all of my daily scheduled meds and putting them into separate little dishes. My mom, dad and Will are all in charge of making sure I take them at the right times.
My appetite is still not exactly normal or consistent. I often rely on THC pills to boost the appetite so I can continue to gain weight and to help with consistent sleep. Getting my medical card was certainly not easy, as my MA doctors can’t issue cards across state lines, and my Yale doctors weren’t as involved anymore (to be able to issue for me in CT). One of my awesome doctors at Yale stepped up to help and I see her now in CT also and I’m so grateful that she was willing to help with the process. Driving to Boston to pick up my THC products was getting to be really difficult, since we aren’t there as often anymore (this is a good thing) and having them has helped me to gain 20 lbs in just 4 weeks!
My low bacteria dietl is still in place and will be for at least a full year. This isn’t the end of the world but makes for constant need to think and plan ahead, especially when leaving the house for pretty much anything -- do I have my meds, masks, gloves, anti-bacterial wipes, purified bottled water, approved food, and even my own specially made ice cubes in a Yeti tumbler (if I’ll be out for the day)? Things you would think would become routine but somehow they still require extra thought, which my parents and Will often handle for me. For example, if the weather is nice I can attend an outdoor event, but I can’t eat or drink anything there so we have to plan ahead!
Neuropathy is still an issue – it effects my feet, my legs, my hands, my mouth and lips, but most days I am able to push it out of my mind. I tend to be more aware of it on the days when other things are bothering me. Although I am mentally prepared to have some degree of it for life, it would be nice if it went away, and I must say that literally just this week I noticed some improvement in my feet. Crossing fingers that this trend continues!
One of the most frustrating side effects for me is one that we rarely talk about – the cognitive decline -- chemo induced ADHD (chemo brain/fog). It’s difficult to function with these side effects and sometimes I worry (and I know my parents do too) about how I’ll manage at school if these don’t improve significantly before I go back. It’s frustrating for me and for my whole family that I can’t remember important things, I often can’t stay on task, and sometimes I forget what I’m saying mid-sentence.
I recently learned from my transplant doctors that I won’t be able to go back to school in September, which was pretty disappointing. Of course I’m grateful to be able to go back in January – although I’ll have to live without a roommate and with some special accommodations, but I’m okay with that and I just can’t wait to go back!
My brother Will on the other hand will go to Roger Williams in RI in August. I never thought my younger brother would go off to college before me, but I’m really happy for him as he is ready to go away and find some normalcy there. He’s had a really tough few years and managing all of that at 18 has not been easy for him. I’m excited for him to have the opportunity to go!
We’ve had some really nice weather lately so I’ve been able to visit with friends outside on the patio. Many of my friends are away for the summer (or much of it) for internships and/or experience trips to Europe, plus family vacations. The friends that are around are working but are great to come by regularly on their days off and are helping me to pass the “isolation” time. It’s not lost on me how lucky I am to have awesome friends and to have had my transplant in February, as I know that some kids are just coming home to their isolation in winter months and that must be SO MUCH HARDER.
Probably the best news on the horizon is that MY PORT IS COMING OUT on July 10th! This is so significant because it’s been implanted in my chest, right over my heart since March 17th, 2017. It has been a constant source of anxiety (and sometimes pain) for such a long time, and yet it has been a life saver and the direct carrier for countless chemo infusions, pain meds, blood and platelet transfusions, etc. and when your doctor tells you they are ready to remove it, that it something to celebrate (my mom is knocking on wood reading this I’m sure)!
A great day for me might be considered a terrible day for most other 21 year olds. I battle many ongoing side effects of chemo and radiation but it’s all relative – because I’ve experienced so much worse in the last 2+ years, my perspective allows me to be content with just the basics of life. Of course I look forward to the day where I feel even closer to “normal”, but I’ll always carry with me the reminders of being a survivor.
End of part 1
Two and a half weeks ago we moved from Boston Children’s Hospital to Spaulding Rehab Hospital in Charlestown. It was hard to say goodbye to all of my nurses, doctors and other care providers but it was exciting to move to the next step in recovery.
Many of you probably saw the video of me walking out of my transplant isolation room at BCH through the bubble parade in the hallway to transfer to Spaulding…I worked really hard with my PT and OT providers at BCH for months to be able to walk that stretch.
My room at Spaulding is unreal and it has amazing views of the Boston Harbor which makes getting up early for 3 hours of therapy sessions a little easier.
On my first day here I was asked at least 5 times what my goals are while here. The first time I said I just wanted to be able to walk again. But as I was saying it I knew I wanted more ...every other time I was asked I said “to get back to being a normal person, like my regular life”. I want to get back on the ice. I want to go back to school. I want to do everything I used to do and I’m determined to get there as quickly and safely as possible.
My appetite is coming back – my feeding tube was pulled last week and I am enjoying eating regular food again, and my doctors are working with Spaulding to wean my painkillers and many of my other meds (although there are some I’ll need to stay on for a while).
In the few weeks that I’ve been at Spaulding I’ve already switched from a walker to a quad cane, to a smaller footprint quad cane, to a single point cane, and now I can walk mostly without a cane. My therapists (PT and OT) provide a rigorous daily schedule of workouts for me. My parents and everyone here are blown away by how much progress I’ve made. They’ve done such a good job that we’ve agreed on a discharge date of April 16th -- much sooner than expected!
When I get home I’ll be in outpatient PT so I can keep getting stronger and closer to meeting my goals. I’ll also be coming to Boston every Thursday to go to the Jimmy Fund Clinic at Dana Farber for check ups. I’ve already been there twice since moving to Spaulding and my counts have been great – thank you Will!
I’ve enjoyed seeing friends and family while here at rehab and I was especially honored to recently have had a very special visitor – the legendary Jack Parker (and his super nice wife Jackie) came to see me! Jack is the former BU Men’s Ice Hockey Head Coach…he spent 48 years at BU as a player, assistant coach and then head coach (for 40 years), and is an incredible man.
I’ve been really lucky to have been able to see visitors while here. I’m only able to because I’m still in a hospital setting, but once I go home I’ll have to be in protective isolation for a few months. This means that nobody can come into our house except for me, Will, my mom and dad. I’m also not allowed to go to any indoor public places or private homes (other than my own). I can visit with people outdoors so I can see friends on our patio for the summer. I’m also allowed to go to a restaurant with outdoor tables, so I’m hoping we have a lot of good weather coming for spring and summer!
I’ll be on a strict post transplant diet for about a year, which means that I have to be really careful of what I eat or drink to avoid infection, so please don’t be offended if I can’t eat something you share with me!
Yesterday my parents left me alone (not exactly alone….there were plenty of nurses and doctors around) for the day the first time since October, as they went to watch Will receive an Inspiration Award at the CIAC All State Hockey banquet. I really wished I could have been there in person but I’m so happy they honored him with the award, and also glad to have some video of him receiving it. I’m so proud of my brother!
Thank you to EVERYONE who supports us, you all know who you are and we couldn’t have gotten through the last six months (really the last two years) without you guys! I can’t wait to be back to a normal life so I can pay it forward.
And an extra shout out to our friends and family members that are always here for us...the kind that show up for whatever we need, including taking time off from work and driving for hours in Friday rush hour traffic to another state just to attend a 6 minute send off bubble parade!
For more information: email@example.com or 203-521-1778
Charlie has battled (and continues to) in ways we can’t describe, nor can we imagine what it feels like to be in his body, or his mind.
Over the last two years we have met many new friends, lost friends to this hideous disease, seen friends triumph, seen friends relapse, watched all of their parents struggle with the pain of watching their children battle, while they (and we) accept the challenges that come with today’s reality, as well as the unknown path ahead.
It is not lost on us how fortunate we are to have been embraced by the most generous and loving community, doctors, nurses, family, friends, acquaintances, even strangers, and of course the incredible hockey world.
We went from a two income family to a zero income family, while incurring many new expenses, and dividing our family between two states in order to get the best possible care for Charlie. Without help, we would never have been able to do this.
Thank you all who have helped in big ways and small. Every bit matters. Most importantly, thank you all for the continuous prayers for his recovery, and for all of the kindness that has lifted Charlie’s (and our) spirits and have kept us afloat.
As one of Charlie’s doctor’s said just today, “we wrecked him in transplant…but it was for a good cause”.
Tonight on his 144th consecutive night here at Boston Children’s Hospital, he continues to quietly fight on.
He’s currently working through side effects of Grade 3 Graft vs. Host Disease (GVHD), while he simultaneously is working on repairing and strengthening his body from the chemo and radiation that was required to get into remission, as well as condition him for the transplant.
Never did we think on March 16th, 2017 that this would be where we are today, but we are, and we continue to be hopeful that there is bright light ahead.
NBC - https://vplayer.nbcsports.com/p/BxmELC/nbcsports_embed/select/media/ptMHalicDZk5
CNN - https://www.cnn.com/videos/tv/2019/03/13/capalbo-brothers-positive-athlete.cnn/video/playlists/cnn-positive-athlete/
For more information: firstname.lastname@example.org or 203-521-1778
Charlie's aunt again. The outpouring of support from total strangers, and the greater community makes our family feel so much stronger as we have started Charlie's war against cancer. To each one of you, donations large and small, we are humbled and at the same time reminded that most people are essentially good and kind . Thank you for showing us that it's not just a belief. It's a fact. ♥
Charlie and family are humbled with gratitude for all of the contributions, large and small. The messages of prayers and love are being felt daily. They want to thank everyone personally when there is time, but for now, please know that the support, both financial and spiritual are making a difference! (Aunt Lisa)
Our thoughts and prayers are with you guys... our son Joey (also a hockey player!) battled Stage III NH Lymphoma (Anaplastic Large Cell) 2 years ago at the age of 10... he is now a healthy 12 year old in remission for almost two years and back on the ice! Stay strong Charlie - you got this!!!!
I'm so sorry to hear about this diagnosis but how wonderful that the whole community is pulling together to support him and his family. I want to let the family know of a wonderful organization called Friends of Karen that helps children (through age 21) who have been diagnosed with cancer and their families. The family might want to check them out at www.friendsofkaren.org and apply for help (financial, emotional, advocacy, sibling support, etc.). Wishing all the best to Charlie and his family.
Wow! So great to hear how you are doing, feeling and planning for a full recovery. You got this. Stay strong. We wish you all the best.