Mighty Jo Conquers Leukemia

08/27/2024

With so many kids focused on back-to-school excitement (and dread 😂) this week Joey and I are starting our giftcard drive for kids at Connect Children’s Medical Center that need some extra love this fall! All giftcards will be mailed to us and hand delivered at the end of Childhood Cancer Awareness month! Please help if you are able. I will never forget the feeling of not being able to send Joey to school during her treatment. It was absolutely soul crushing.

02/04/2024

Today is world cancer day, and exactly one year (and one day) since Joey’s nightmare with pediatric cancer “ended.” One year since I pumped life saving poison through a hole in her stomach. One year since we stopped counting down the days until the end of treatment and got to begin counting ahead-one day further away from chemo each and every day. She got to have a sleepover with her friends to celebrate. She read every.single.card and letter that was sent to her from her trusted humans and strangers around the world over her 800 days of active treatment. One year and I still feel like I can’t breathe some days. Especially the days she is sick without an identifiable reason. Where I used to pray she didn’t have strep or Covid now I hold my breath hoping those mundane tests are positive. Those are the days she tells me that it would be a lot harder if her cancer came back because now she knows how bad the treatment will hurt. Those are the moments I know cancer took her innocence but in its place left a child ready to take on the world. Please remember we were the “lucky ones.” B-Cell ALL has a 95% cure rate and so many families we met along our journey don’t get to hug their children today. To all that have been impacted by cancer we are holding light and love for you today. Joey has one more clinic visit in February before we start going in every other month for counts. A blessing and a curse. Less blood draws but less reassurance that she remains cancer free. I am glad I was naive to believe we would somehow go back to “normal” when her treatment ended. I know now there is no going back-we only move forward. And for every person that is still walking with us today thank you. I know this has been one hell of a horrible ride that you did not have to join us on-and for you all I am forever thankful.

11/25/2023

Three years. Three years since the day your little world was turned upside down. Three years since I walked into the Emergency Department with you, your blanket and my laptop so unbelievably oblivious to the news Dr. Gell would give us. The news I had to try to understand as I wiped tears from my eyes and asked her to slow down, to repeat your diagnosis again and again, eventually just staring at her as I asked her to write it down “B-cell Acute Lymphoblastic Leukemia.” We’ve spent every Thanksgiving week in the hospital since that diagnosis.

This week you had counts. You sat in my lap, joked with your nurse and child life, and buried your head in my chest as they drew blood. You held tight and took deep breaths and before we both knew it the blood was drawn. We were able to walk out of the hospital before your counts came back because everything is going so well. You are now 75th percentile for height and weight. We truly are the luckiest of the unlucky. I wish more than words could express you didn’t have to go through this but I am amazed by all you’ve accomplished in these last 365 days. You had your last rounds of intrathecal, port and oral chemo, your port removed and your feeding tube site surgically closed. You’ve traveled to Hawaii and Cape Cod and spent a whole week at Hole in the Wall Gang Camp. You learned how to tie your shoes, swallow pills, jump off a diving board and have a new love of peppers (just in time for farm season to end and us to have to buy them at the grocery store). You are the perfect mix of chaos and calm learning your own way. Fierce, independent, creative and loving. I’m sorry November 25th will forever be a day that changed your childhood but I am looking forward to celebrating all you have accomplished since that day. Love you Joey girl.

10/31/2023

https://runsignup.com/mightyjoey

Yesterday I was getting Joey ready for school when she handed me an “autobiography” she had written in class. I held back the tears as I read it. She is doing well, some bumps in the road here and there, but overall she continues to thrive inspite of all she has been through. This weekend Jimmy (Joey’s 14 year old brother) and I will be running in honor of Miller Walsh the little guy that started our family’s journey with pediatric cancer. Please read Joey’s autobiography and consider donating to Connecticut Children’s. No child should have to write a “story” like this but I am eternally grateful she has the chance to continue to make her story anything she wants it to be cancer free.

08/16/2023

https://raceroster.com/events/2023/71069/the-2023-asics-falmouth-road-race/pledge/participant/21030306

I’m so far behind in posting our summer adventures (and difficult moments) but I’m hoping you’ll let me give you an update on our 4th of July week while asking for a little help too. I know, I know that was 6 weeks (and what feels like a lifetime) ago and I make a lot of fundraising requests to you all…but that week I promised the founder of an incredible organization that provides free Cape Cod vacations to families with kids fighting pediatric cancer that I would help to raise $1500 to cover another family’s trip. Tommy’s Place is an 11 bedroom converted inn in downtown Falmouth. Walking distance to shops, restaurants, parks and the beach (but two swing sets, an in ground pool, basketball court, indoor and outdoor game rooms, movie theater, art room, incredible kitchen and a bar mean you don’t ever really need to leave). Tommy’s Place is designed to allow families like ours to come together in a controlled environment. When it is too risky to bring your immune compromised kiddo on vacation Tommy’s Place is there to give you some respite and smiles. The mama that showed me around the house spent her kiddos last Thanksgiving at Tommy’s Place where the local community donated THREE Thanksgiving Dinners so her cancer warrior could have Thanksgiving with three different groups of friends and families. I think the photos speak more to how needed this vacation was more than my words ever could. While I likely won’t be able to run the road race this weekend (too many hard moments these last few weeks) I would like to honor my fundraising commitment because this race was about more than the miles for me and so many families like ours. Please consider making a small donation if you can. Tommy’s Place just opened a 2nd location on the Cape so they can now provide 104 local families this amazing opportunity.

06/08/2023

She did it. Another surgery done. She has some new internal bling (titanium staples holding her stomach together) and will sport yet another scar on her abdomen. This feeding tube has been the biggest blessing and curse of the last 2.5 years. Her surgeon came to see her in pre-op and looked at her with pity and said “my goodness you and I have been through some things together.” She smiled and was kinder than I have ever seen her before a major procedure. This surgeon performed her initial g-tube surgery, came in on a Sunday afternoon to repair the one in a million complication from that surgery, removed her port in February and has visited with us countless times while Joey was inpatient over the last few years. He’s part of our family. He told us G-tube sites typically close on their own, with no need for surgical intervention. Unfortunately, odds don’t typically seem to fall in Jo’s favor and in fewer than 5% of cases surgery is needed to close the hole to the stomach, both internally and externally. The irony of it all is Joey has learned to swallow pills, something I couldn’t comprehend she would ever be able to do after 5+ hour standoffs with chemo in those early months. Her feeding tube was our only option to ensure she took her meds daily during treatment. It helped her her nutrients and fluids during some of our harder moments. But, I’m thankful for this newly acquired pill swallowing skill because she is back on antibiotics for the foreseeable future. Joey girl, I am so proud of you and my hope is for a spectacularly uneventful summer ahead.

06/04/2023

We made it to Oahu (and back) thanks to an amazingly generous trip gifted to our entire family from . This trip taught me a lot of lessons but first and foremost it was a huge reminder to focus more on what we can control and perseverate less on what I thought the trip would look like. This wasn’t the trip of a lifetime I dreamed it would be for Joey-but I am so thankful she has a lifetime to make a dream trip happen. When we landed in Hawaii Jo was in so much pain she could barely walk. I hoped it was just jet lag and soreness from being curled up on an airplane seat for so long but as the week progressed it became clear that her gtube site was not closing as it should have and by the last day she needed to be pushed in a wheelchair. Every drink and meal caused her excruciating pain. Walking hurt, sitting hurt, swimming hurt and irritated the gtube site. Make a Wish was wonderful and rebooked us for swimming with turtles for our last full day in hopes she would be feeling better by then. She struggled through a 9 hour day and in the end got to sit near lots of huge turtles but she just couldn’t submerge her stomach in salt water long enough to swim with them. I hate that Joey’s body failed her yet again, but I am so thankful for the smiles and laughter we shared (even if many of those came snuggling in a hotel bed or at a cat cafe nearby). Like most of the last 2.5 years very little about this week went according to plan-but we saw tons of wild animals, tried a few new fruits, went to a Luau, swam (briefly) in a waterfall and miraculously kept Joey out of the hospital thanks to her incredible medical team in CT. We made our way back Connecticut Children’s last week when we landed and Joey is scheduled for surgery on Wednesday. Hawaii wasn’t the trip I’d hoped it would be, but I’m incredibly thankful for three kiddos that have learned to smile and laugh in the moments they can, even when those moments are surrounded by hard situations. If you all could send a little love to Joey for surgery Wednesday I’d appreciate it!

05/02/2023

Today we closed another chapter. Today Joey stopped taking all of her treatment related meds (including daily antibiotics). Today I took out her feeding tube at home. It was uneventful and she took it like a champ (which if you’ve been following her journey you will know that isn’t her typical response to anything medical). Like so much on this journey that feeding tube encompasses such polar ends of the emotional spectrum for me. That feeding tube kept her alive. It was the only way she was able to get the chemo, steroids, antibiotics and anti-fungal meds needed to kill the cancer and keep her body free from other potentially deadly pathogens. It was how we put calories into her body when her weight dropped below 40lbs. It was also the cause of the single most terrifying moment of the last 2.5 years. That moment wasn’t sitting in the ED and hearing she had Leukemia (that was brutal but I knew enough at the time to know we got the “best” type of pediatric cancer diagnosis possible). No, it was the phone call from Joey’s primary oncologist after Jo was admitted from the ED with a fever and debilitating pain after her first feeding tube was surgically placed. Her oncologist said “I don’t know if you are at the hospital, but if you aren’t you need to be-this is bad, really, really bad.” The one in a million complication of a very routine surgery could have killed Joey. That feeding tube gave us hope and peace and just as quickly took it back. I’m exhausted and in a bit of disbelief that for the first night in 2.5 years I don’t have to do anything but lay here with her and keep her comfortable. No meds, no cleaning syringes or tubing-just get ready for bed like we did before this nightmare began. Thanks for loving on us and supporting us through it all. We are a lucky bunch.

03/17/2023

Sometimes I find these random days of celebration to be unreasonably emotional. I guess I can get through the day to day but the days when the world seems to have gone back to normal are the days I’m reminded that we may never find our way back there. With every fever we hold our breath. Every ache, pain and bruise we hold our breath. Every bloody nose, unanticipated nap or cut that just won’t heal we hold our breath. I anticipated feeling this way, I had been warned that with the end of treatment comes the beginning of a new sort of anxiety. What I didn’t anticipate was Joey being aware enough to feel this worry too. The weight is heavy, all the time, and yet I am so thankful for this weight because it is the weight of remission. It’s like the price we pay for being able to return to “normal.” Joey had Covid, she was a rockstar and barely missed a beat during her quarantine. It was comforting to have a reason for her fever and sore throat as messed up as being thankful she had Covid is. Rob had to attend her parent-teacher meeting solo as Jackson and I were down for the count with what I can only describe as the stomach bug from hell. Her teacher had amazing things to say including how impressed she is that Joey can miss weeks of school and jump back in like she misses nothing at all. Her reading is now ABOVE grade level which is absolutely remarkable. Next week we head back to clinic. Counts are a blessing and a curse. A potential reassurance that her body is slowly beginning to produce healthy marrow and blood cells or the potential for our world to come crashing down…again. I have no reason to believe in the latter, but I had no inkling she had Leukemia to begin with so that is of little solace. If you could all send some love (and maybe say a toast or two over a green beer today) for Joey’s continued good health I’d appreciate it more than you know. Happy St Patrick’s Day from Jo and her smiley leprechaun sidekick Yoda.

02/16/2023

We are super proud to announce that Joey was chosen as an honored hero for the LLS Visionary of the Year campaign. Some amazing CT folks are hoping to raise $300,000 for kids like Joey!

Announcing our LLS Visionaries of the Year Honored Heroes: Josephine (Joey) Boncoddo! ❤Joey's life was changed when she was diagnosed with leukemia the day before Thanksgiving in 2020. She has battled hard, and we are thrilled to share ended treatment this month! Now Joey gets to relish in the things she loves--her family, her friends and her Squishmallows. Our Visionaries fundraise in honor of local blood cancer survivors like Joey Boncoddo. We honor those affected by blood cancer and share their inspiring stories to raise awareness, hope and support for Leukemia & Lymphoma Society.

02/12/2023

And we are SOLD OUT! Here is the final board with the randomly generated numbers for the Eagles and Chiefs. A winner will be determined at the end of the first quarter, second quarter, third quarter, plus the final game score (the end of OT if needed). The winner is decided by looking at the last number in each teams' score and then matching those digits on the grid to see where the squares intersect. If you don't remember your number or are just generally confused by all this send me a message! I will reach out to the winners directly so if you don't want to pay any attention to the sportsball tonight that is ok by me! Thank you friends. $1000 is being donated to organizations very near and dear to my heart thanks to your generosity. PLAY BALL 🏈