Heather Stover Arundel 4 Stem Cell!
I have 8 lesions in my brain & 4 on my spinal cord.
6 lesions in my head are inactive, 3 on my spine are inactive.
1 lesion grew, next to my pituitary gland, 1 lesion stayed the same, in the area that controls emotion and memory.
1 lesion on my spine is active and causing the "MS Hug" that I struggle with - imagine a vise grip on your diaphragm that causes severe pain when you breathe.
All in all, they consider these results a successful outcome for the clinical trial. My neurologist anticipates it will be 2-3 years before I am in a wheelchair and is hopeful that it will take 3-5 years for me to lose the ability to speak.
In order to continue to see improvement, my options are to seek stem cell therapy internationally and that's about it. Since I cannot afford the $21,000 cost of the international treatment (and travel expenses), I'll just sit and wait for my brain & spine to continue to get holes. I will truly be a "Holy" person!
"Many people ask me, pretty regularly, "How are you?". My usual reply is a smile, laugh, and "I'm good!". However, the truth is far more complicated and I do not enjoy appearing to be a kill-joy. So, the easiest way for me (both emotionally and effectively) is to just post my truth here. Those that have followed my journey know that I went, again, to Panama at the end of January. That treatment did not accomplish as much as previous trips, and I came home with a severe kidney infection. In addition to the kidney infection, my doctors discovered that I had developed Gastrointestinal Stromal Tumors. This form of cancer can develop after radiation treatment. I have received multiple cycles of chemotherapy in a speed delivery over the last two months. Now, my blood tests and latest bone marrow biopsy show that the Acute Myeloid Leukemia has returned. I seem to just have a ton of really random crap that my body likes to throw at me. So, I head back to Ohio on May 6th to get more treatment. I will be there for two weeks. This year will be the first Mother's Day that I will be away from my children since becoming a mommy back in 2001, it will be hard. Trust me when I say to you, I am the very definition of Murphy's Law, and that is not an accomplishment that I am proud to have on my resumé. If you can spare a little good energy, or a prayer, I would greatly appreciate it and be indebted to y'all.”
That is where things stand. We’re not asking for any donations right now, just wanted to let everyone know the latest. More updates to come.
To quickly recap: Before Heather left for the Chicago clinical trial in September ’16, she was in the final stages of acute myeloid leukemia (the same type of cancer that just took the life of NBA sideline reporter Craig Sager). She was receiving blood transfusions and many other treatments for 6-8 hours a day just to keep her alive. She was given 11% odds of surviving the clinical trial due to her advanced condition. Against those odds she pulled through and the cancer treatment and bone marrow transplant was mostly successful. I say mostly successful because her bone marrow regeneration stalled out at around 75%. She went to Ohio in December ’16 for a 3-month follow up to the trial. While at the follow up, she was given stem cell infusions that have since brought her bone marrow back to full, 100% strength. While this sounds like excellent news (and it is), the blessing is also very much a curse.
In order for her doctors to treat the cancer, they had to put her under extreme amounts of stress in order for her to survive. While this proved to be the correct course of treatment for the cancer, the stress flared up her MS. With a fully functional immune system and a disorder that sends it attacking all the wrong things, extensive damage to her brain and spine has occurred.
When she returned from Panama in June ’16, all of the lesions that she had were completely healed. In her last MRI in October ’16, she had 137 newly formed lesions. 83 in her brain and 54 in her spine. The largest lesion is again nested on her pituitary gland. It measured 10mm (the size of a 4 carat diamond). Massive amounts of nerve death in her hands/arms/legs/feet have also transpired. The nerves that control her stomach are also affected. Her doctor has had her on immune suppressive treatments multiple times a week to try and minimize all of the damage her incredibly healthy immune system is doing.
The time has come for Heather to return to Panama for more treatment. We have no other options.
She leaves on Wednesday (1/25/17).
The stem cell treatment will hopefully reverse the massive damage that has happened over the past 6 months.
Heather is alive today because of the tremendous support all of you have provided. We just wanted to let everyone know what was going on as the silence had become somewhat conspicuous. Heather is never one to tell people exactly how poor her health has become so this also serves that purpose.
Thank you all. I’ll send updates as I have them.
(please see part 1 for details from the Chicago treatment)
So where are things now? Her immune system is back to 100%. The bone marrow is somewhere in the 75-85% range of being regenerated. Her body is producing good blood. She does needs to get blood and platelets every 4-6 days while the bone marrow spreads and grows. So much better than where she was before she left when she was going to the hospital every day for 6-8 hours of blood transplants and other various infusions. Things look to be moving towards a full recovery from this.
The bad news is that while this was a complete success, scans of her brain and spine have shown that the lesions that had been healed from the last Panama trip have come back to life. Currently most are very small, but others are not. The incredible amount of stress and pain she has been subjected to has undoubtedly flared up her super rare and aggressive form of MS. Her doctor is going to be keeping a very close eye on the lesions. We’re hoping that as her body recovers, the lesions will go inactive. It’s unlikely they will with the track record she has but we will continue to keep putting positive thoughts and energy out into the universe. Positivity has worked. No reason why it won’t continue to work.
As I have said before, none of her treatment would have been possible without all of you. The generous donations, emails, texts, messages, prayers, meals brought to the family, rides given to the kids, babysitting and all the other things that have been provided to us without a single thing being asked in return. The village has risen to the occasion of keeping Heather alive. She’s a fighter. Stronger than any person I’ve ever met. If anyone is worthy of your generosity, it’s Heather.
We press on. Ready for the next challenge. Braced for the next time a doctor will present unwinnable odds but with the knowledge that we have an army of amazing humans behind us, ready to help when asked. Your support means everything to us.
With your support (and to borrow a phrase from Suzanne Collins)-- may the odds be ever in her favor.
Thank you all. I’ll keep you posted.
Maybe it would have been better to not know the odds. To have just been told there was a “good chance” she wouldn’t make it. As Han Solo once said, “never tell me the odds.” But Heather was told her odds. 11% chance of survival. She looked that 89% chance of dying square in the eye and didn’t blink. What she posted on her Facebook account on September 9th says it all-- “I am the 11%. I’ve survived. I am on the mend.”
The odds be damned.
This latest chapter in her medical story has not been easy. In fact, it has been quite the contrary. But regardless of the challenge, Heather has persevered as she has at every step along the way since she was diagnosed with MS back in 2012.
As I mentioned in the previous post, Heather could not fly to Chicago. Her blood condition and internal bleeding made a quick 4-hour flight to Illinois unsafe. A 5 day road trip was the only option. This cross-country drive to Northwestern (8/21-8/25) was not without incident. At the first stop on the drive, Heather’s nurse got a bad tuna-fish sandwich from a greasy spoon truck-stop diner and was stricken with horrible food poisoning. Heather had to do most of the driving that day. The hospital in Nebraska she was scheduled to receive treatment the next day had, hours before her arrival, saved the life of a police officer shot 4 times in the line of duty. Because Heather was scheduled to be there, this hospital had in-stock a clotting agent that they typically don’t have as they are not a trauma center. The officer arrived in critical condition and they were able to give him this clotting agent that helped save his life. Heather, however, didn’t receive the clotting agent she needed. That night she had blood oozing out of her ears, nose, and throat; but the officer’s life was saved. I’m not one who believes in coincidences anymore. Things like this have happened too often for me to think that chance is in charge.
After a few more days of driving, Heather arrived in Wilmette, Illinois on August 25th.
On the 26th at 10pm, the first and most dangerous part of the treatment began. The decision was made to drill into her bones and insert radioactive pellets directly into the bone marrow. The lesions and bleeding from her organs precluded the other avenues of administering radiation (IV or x-ray). The abysmal condition of her blood also prevented her from being sedated or given pain medication. The procedure was as follows—
***(those faint of heart or stomach should skip to the next paragraph)***
--the doctors inserted a modified needle that doubles as a mini drill through her thigh into her femur. This needle then drilled into her bone and a radioactive pellet was inserted. They did this 10 times in her left femur. 10 times into her right femur. 10 times into her sternum. 5 times into each humerus bone. And to round out the evening, 30 times into her hip bone. All of this drilling was done while she was strapped down and stone cold awake. Needless to say that there was much screaming involved. The procedure was so intense that multiple nurses and doctors had to excuse themselves as it became too much for them to witness. And yet Heather endured and was able to somehow absorb a level of pain that none one of us can truly understand.
The doctors were astounded that her heart didn’t stop during the procedure. The level of pain she took should have stopped her heart. But it didn’t. At least not right away.
Saturday, the day after the procedure, Heather’s blood pressure kept bottoming out. She was extremely light headed and dizzy. She passed out on a few occasions. As the radiation was doing its thing inside her bones, she became very sick and wasn’t able to do much more than lie on the floor of the shower with cold water running on her.
On Sunday her blood pressure seemed to stabilize and she was able to rest. A nurse was at her side monitoring her vitals for most of the day. Around 7pm, the nurse left as the next shift was due to show up shortly thereafter. Heather went to bed to sleep as she was extremely fatigued. The next nurse wouldn’t show up until 10pm as transportation issues delayed her. Right around this time, while she was sleeping, Heather’s heart stopped beating. Full cardiac arrest. The delayed nurse and a blood technician arrived at this exact moment. They walked into the room to hear the heart monitor alarming and leapt into action. They busted out the defibrillator and shocked her. Nothing happened. Charged it up and shocked her a second time. This time her heart started. It was on this shock that Heather regained consciousness. Not satisfied with the rhythm of her restarted heart, they resorted to the Pulp Fiction method of heart triage. They jammed a long needle into her chest, directly into her heart and pushed in adrenaline. That got things pumping nice and strong. An ambulance then quickly whisked her to the hospital for tests and observation. Brain scans confirmed that she wasn’t down for more than 4 minutes as she suffered no brain damage. Apparently permanent brain damage happens after 4 minutes. Did you know that? I sure didn’t. A fact that I will never forget.
12 hours later she was deemed “less likely to die” (that’s my term, not theirs) and allowed to go back to the hotel to rest.
The radiation worked quicker than the doctors expected and were able to move up the schedule for the bone marrow transplant. Again the plan was for Heather to get the following injection/bone drilling wide-awake and without any pain meds: 5 times into each femur, 2 times into each humorous bone, 3 times into her sternum and 10 times into the hip. The procedure began but this time things didn’t go as planned. They had only completed one leg before Heather’s body just couldn’t take this level of pain and stress anymore. Her heart decided enough was enough and it stopped. The transplant team was more than prepared for this eventuality and a crash team immediately got to work on reviving her. They were able to get her heart started again in just under the 4-minute mark. The head of the transplant team made the decision that the risk of keeping her awake was more dangerous than putting her under for the rest of the procedure. So nighty-night she went. When she woke up, the procedure was completed and she couldn’t have been happier.
Over the course of a week, Heather clinically died twice. It would have been very easy for her to just let go, be done with all of the pain and literally go towards the light. But her will to live and her desire to be here for her children is stronger than the pull of whatever lies beyond the welcoming illumination of the afterlife.
In the following two weeks, Heather was quarantined while the bone marrow took hold. It firmly implanted and began to steadily spread and grow as it was expected to. Her immune system came back ahead of schedule and her bones began to produce good, stable red blood cells. Her condition improved so much that she was able to fly home on September 17th.
***please see part 2 of this update for the rest***
Dear Heather , Chris and family, My prayers are with you . You are an amazing family You really are a testament that " that you don't give up 5 minutes before the miracle! Keep trudging-- I am broke right now but i will try and give more money later Love ya, Wendy Dillon (Teresa Cisternino's neighbor)
Sending light, love, and healing prayers from Wyoming
Truly a miracle!! Heather you are so unbelievably strong! Hollywood couldn't come up with a character even half as courageous as you are!
A. Scott Hinsley's friend. B. The is a 50K cap on the amount of points that can be transfer into your account. C. Easiest way to get you a room & keep your cap open for others to contribute is to book you a reservation in your name with my points. I can do this, but need a day and place. Please call me at 512-983-3316
That is such fantastic news!! I have been praying for you every day and now my prayers have been answered! Thank you God!! I hope I get to see you again some time at archery.