One Year...
John J. Hagen
It’s been one year since John’s diagnosis, March 25th and one year since John arrived at St. Jude and began treatment, March 27th. John has come a long way!
John is looking good! He has a full head of hair. It’s a bit different: same color but much softer and silkier than before. He loves it because he thinks it makes him look “normal”. He doesn’t have to wear a ski cap to cover a bald head or lack of eyebrows. He likes that he can walk around without looks and whispers. If people don’t know him they wouldn’t even know he’s in treatment and he likes that. He just wants to fit in!
John is moving around nicely all things considered! His legs continue to be an issue. As I mentioned he has nerve damage in his legs from the very nasty chemotherapy, VinCristine. (VinCristine is super important for improving CURE rates in Leukemia … So, he grins and bears the pain in the quest for his forever cure) He wears leg braces (when I harass him) to help give him stability. He also has Avascular Necrosis in his knees, caused by the high dose pulses of steroids, Dexamethazone. No need to Google it, it means death of the bone which leads to destruction of the joint. Those MRI results hit us pretty hard, devastatingly hard. We met with an AVN specialist during our last visit to STJ. He will be closely monitoring John’s knees and hip. If there is further damage to the knees or progression to the hips Dr. Pui “may” consider lowering the steroid dose. I say, “may”, because steroids are also very important in the quest for John’s cure. I can have John’s joints replaced after treatment but I can’t replace John. So, we proceed with the monthly pulses of high dose steroids! What does this all mean for John’s mobility? He can’t run, which sucks! Not afraid to say it, it totally sucks! It actually breaks my heart: I remember him running across the soccer field & running down the street to play with friends. BUT, he can walk! And he walks around very well! He isn’t using a wheelchair and he is able to climb the stairs. In our world, that is a win!
John was able to go to school! Yay! He returned to CPS for a class. Baby steps, he probably could have stayed longer but I was having some anxiety about … well, everything! I stood outside the middle school with the Head of the Lower (thank you Mr. Lenz :)) and “tried” to enjoy the moment. John LOVED it! The kids LOVED it! They were so happy to see him; smiling & clapping! It was a relief to him, his friends were still waiting for him; he still had a place at school! He felt a piece of his “old life” was finally in reach.
John was able to go on vacation! Oh how we needed a change of scenery! We had asked Dr. Pui months ago if John could travel … His answer “sure, to and from Memphis”. Funny, NOT! After some persuading, we got the thumbs up for travel. We were invited to Orlando for the Tavistock Golf Tournament. The hotel was in the Disneyworld Park so Bella and I got to go the parks (yay! finally time for just me and Bella!), while Rich & John attended golf. We also got to relax by the pool, enjoy the sun on our faces and eat out! It felt great! Thank you Knight for such a wonderful experience! * The back-story: The morning of our departure we stopped by the Charlotte Clinic for a quick check of John’s counts (car was packed and ready to roll). To our disbelief John’s counts tanked! His immune system was ZERO! Our hearts sank! John was bawling, I was crying (and swearing). Queue Chariots of Fire music: Martha May (John’s STJ nurse) to the recue … She called in IV antibiotic balls for us to give John in Florida (we hooked them up to his central line) and told us to go! It gave us some protection since is immune system couldn’t fight off possible infections on its own. We established John as a patient at a children’s hospital in Orlando and made an appointment for lab work. We packed medication for every possible scenario. We were on high alert for fever and washed our hands every other minute even if we didn’t touch anything. But all the added effort was worth it! It was nice getting back to making “good memories”.
John is struggling to maintain stable counts. We are on week 30 of 120 of the Maintenance Phase, low dose treatments every Monday / Monthly trips to STJ for LPIT – chemotherapy to Central Nervous System. This is the phase where I had hoped John’s counts would stabilize. They will still be consistently low compared to normal but not rock bottom. The last month has been a bit of a roller coaster (not the fun Disney kind of roller coaster) counts up, counts down, counts up again. We don’t even want to guess anymore when we’re at the clinic. We used to take bets on White Blood cell count, Hemoglobin, Platelets and ANC (# that represents immune system) but now we just peek at the lab sheet with our fingers covering our eyes. Not sure he’ll ever get those stable counts we’d love but if rollercoaster = forever cure, we’ll deal with it!
The past year has been so very hard and so very heartbreaking! The calm after the storm is proving to be difficult too. The quite moments during the day are often the hardest; images and feelings pour over me. I often wake at night gasping for breath, heart pounding. Seeing my child suffer isn’t something I’ll ever get over, ever! The challenge for me is; how can I harness these feeling and more forward? How do I, we heal? My hope is that through sharing John’s story, bringing awareness and giving back that slowly the healing process will begin.
Rich & I are starting to get more involved with St. Jude & ALSAC (the fundraising branch of STJ). We will be attending St. Jude’s Taste of New York this November, where I will have the honor of sharing John’s story! John is also getting involved with ALSAC and is looking forward to doing what he can to share his story and spread awareness. We are also working with the Charlotte based ALSAC, organizing fundraising efforts here in Charlotte! Bella and I enjoying some volunteer opportunities at The Ronald McDonald House of Charlotte too!
We are participation in the St. Jude Warrior Dash in June! It’s a fun, fundraising event where we’ll conquer obstacles, leap through fire and crawl through the mud all in the name of St. Jude warriors, like John! If you’d like to help team JHUD fundraising efforts click here:
www.stjudewarriors.org/kathyhagen
I can’t forget about Make-A-Wish! John’s wish will hopefully be granted very soon! His wish granter, Thom Filicia @ThomFilicia, is working on his room makeover! Can’t wait! More details to follow.
We also expanded our family! John picked out our new puppy, Tula! She is beautiful Wheaton Terrier. She brings lots of love into our home!
Most importantly after one year John is Cancer Free! (Remission date 5/18) We pray that every day he is one day closer to his FOREVER CURE!
Thank you for walking this journey with us. Thank you for praying for John, for us!
Love, Kathy
Reader Comments (1)
Kathy, Rich, John and Bella-
We want to wish you a very blessed and happy Easter as you celebrate being all together. While we cannot truly know how hard this past year has been for you or how hard the road ahead is for John and you all as a family, we are blessed to know the love we feel for our daughter and can't imagine the hurt and sadness of seeing your child so sick or the anticipation of his forever cure.
You are continually in our thoughts and prayers and we love you all very much. Congratulations on Tula - new puppies are so fun (and hopefully not too much work!). Happy happy Easter!
Lots of love,
Amy, Dave, Sophie & Lola