Jordan's Leukemia Battle
Over the past nine months, he has endured months of hospitalization, multiple painful bone marrow biopsies, intensive chemotherapy and, since September he has been in San Francisco at UCSF engaged in an experimental CAR t-cel therapy that is bringing some light from what has been a very dark tunnel.
At one point his leukemia counts were 96%, but now things are looking more promising with a path to remission. Within the next few weeks he has to undergo a bone marrow transplant. That’s the good news.
Being a single mom has always had its challenges - from day one my sister Caitlin has embraced her life with her son, risen to those challenges and has, single-handedly, produced a son who is an extraordinary, kind, caring, intelligent, artistic young man. There have been no grandparents to help, and we are her closest relatives - and we live in Massachusetts.
Through this intense and terrifying journey, including multiple trips from their home in Santa Fe to San Francisco, Caitlin has been, with phenomenal strength and clarity, at his side fighting, encouraging, cajoling, advocating and caring for her son. She has slept for weeks, in hospital chairs at his bedside. She has given up everything in her own life to do whatever is necessary to make sure Jordan has a future.
While she has had support and tremendous flexibility from her employer, this battle has been financially catastrophic. Credit cards are maxed, and what savings she had are long since wiped; the latest step, the bone marrow transplant, requires that Jordan be attended 24/7 for at least three months all while staying within 35 miles of the transplant hospital in San Francisco.
This is the reality of medical care in America — while we are excited, and hopeful, that Jordan appears to be responding to his experimental therapy, the crippling financial crisis that has come with this treatment is going to be a burden on Caitlin and Jordan for years and years to come.
The next few months are critical for giving Jordan the best possible chance at survival, and he needs his mother by his side. This is a situation that could befall any one of us without warning.
Please donate what you can to help them cover the mountain of costs they face as they head down what we hope will be the homestretch of this brutal fight. In addition to the costs of staying in the SF Bay Area, Caitlin needs to maintain her rental home in Santa Fe. Your donations will help her keep her home, allow her to be with Jordan, and ease the fiscal worries of making it through this stage in his treatment.
The flood of love, sympathy, condolences, sweet remembrances has been amazing... even a little overwhelming at times, but so very much appreciated.
So many of you have been asking when there will be a celebration of Jordan's life, so, on behalf of Caitlin, I wanted to let you know that those plans are in the works, but that it won't be until after she has returned to Santa Fe and had a chance to settle back home.
I know folks don't want to miss it and we will continue to keep everyone updated as things become more defined. In the mean time, know that we all appreciate your continued concern and amazing affection for this terrific young man.
When things seemed to be going well, it seemed almost inevitable that the ground would shift throwing them yet again into uncertainty. Each time this happened, Jordan would find the will and the drive to battle back. Caitlin, along with the countless doctors, nurses and staff who have fought alongside refused to concede even an inch in his treatment and pushed every boundary, every limit that could be pushed, literally exhausting every conceivable option.
All through this fight, family, friends, and scores of people who may not even have known Jordan, have been there providing incredible support in whatever way they could. It is without doubt that without this incredible enveloping quilt of positive thoughts, energy, prayer, patience, kind words, this battle would have been infinitely more difficult. Thank each and every one of you for your part in helping Jordan along this journey by giving him strength to keep moving forward.
There is no upside to the death of a gentle, loving, genuinely sweet-hearted young man at the beginning of his life - he would have been 21 in three short weeks - except perhaps to remind us all of how precious and fleeting life is. We get wrapped up in the daily pettiness and distractions that ultimately mean nothing and sometimes forget to take stock in the wonder and joy of every day being. For all of you who have rallied in support of Jordan, and Caitlin, let this be his gift back to you — hug your family, hug your friends, forgive someone who may have wronged you. Take stock in, and be grateful, for today and all that you have and for those who are in your lives.
Thank you all for being there for Jordan.
Caitlin' s update:
T -5 days...What's that all about??
Against some extremely long odds and truly to the disbelief of a good number of staff members not thinking this young man would make it this far, is the long awaited TRANSPLANT DAY!!
With everything thrown his way...oh yeah, got a new one...we were told the other evening he had been exposed to yet another nastiness, from a staff member, that could potentially cause some serious issues! Yeah ok, bring it! He'll kick its butt too!
This last week has sure been tough on the guy... 8 sessions of total body irradiation in 4 days, new meds (with yucky side effects) to help his body accept the donor cells, being nagged at by me and the nurses to get up, go do some laps, walk, move, anything because it'll help with his recovery...I'm pretty sure any other "normal" 21-year-old would have completely snapped, given up or thrown the towel in by now, but not him. (Yeah...he's going to be 21 next month) Sure, I get the stink-eye every once in awhile when I play "mean mom" but underneath is that spark and fire of a true warrior. Many of you have called us warriors and up to now I wasn't sure I could accept that as a moniker. I'm just doing what needs to be done to make sure my boy is gonna get through this. But, as I look at him, I know WE ARE WARRIORS and together with all of you we will fight this and win!
While he was accepted on a "compassionate use" basis for the use of an experimental treatment from Pfizer, he's just contracted an infection that is requiring immediate surgery. Given the weakness of his immune system and his low platelet count, this isn't an ideal to be having surgery, but it's the only thing that can eliminate the infection quickly and hopefully get him back on track with the current cancer treatment.
If you all could keep Jordan and Caitlin in your thoughts as they tackle yet another challenge in his treatment, we'd be grateful.
Jordan - It was an honor knowing you. Our love forever and always. Rest in peace beautiful boy. Caitlin - I have never met a mom as strong and wonderful as you. You are a true warrior. All our love.
Caitlin I am so sorry for your loss if you need a friend come by. I'm here for you if you need a friend ♥
I will always remember Jordan, his spirit, his humor, his grit, his candor. As I encouraged him, he also encouraged me. The light he brought to ATC lives on. Caitlin, I am thinking of you.
Lynette and I are so very sorry to hear this news. Our prayers are with you all at this so very difficult time....
Caitlin, May God bless you and be with you, even when the darkness is overwhelming. Know that we love you and are praying with you during this difficult time of sorrow.
All the teachers, staff, and students at ATC are devastated to hear about Jordan's passing. He brought a bright light to all around him. We loved joking around with his playful personality. Our hearts are so heavy knowing he could not beat this. Let us know when and how we can honor this courageous young man who lives in our hearts.
My heart is with Caitlin and family. I'm so sorry. Thank you for letting us know. Please let me know what we can do to help in Santa Fe. I'd like to help make sure she has a clean and stocked home when she returns, or whatever would help.
There are no words; you all are in our thoughts.
Love and prayers to you and Jordon.
I'm thinking of you, Jordan. Sending positive thoughts your way.
Sending wishes for the best possible outcome.
The entire ATC community has Jordan in our prayers. Susan Lumley