Years ago, when I was a 20-something bachelorette, I was microwaving a frozen burrito when I received a phone call that would take my breath away and leave me feeling dazed and sick to my stomach. It was the feeling of getting really bad news, and it was the first time I had ever received this type of bad news. A friend had been killed in a car accident overnight.
I remember dropping the burrito, plate and all, into the garbage and then wandering aimlessly around the house in the hours that followed, until I finally crawled into bed and spent a restless night trying to sleep, but then continually waking to thoughts of this person and the tragic events.
Throughout the years, I have experienced this same “bad news” feeling at times. I have felt it when learning of the death of my grandparents, the death of my uncle, the cancer diagnoses’ of friends, layoffs at work, the death of a coworker last year, and of course Ryan's diagnosis of Aplastic Anemia. I think this feeling might be related to the temporary “fight or flight” response our bodies have to danger (or a bad situation). However, I have been having this feeling on a regular basis lately.
For the first two months after Ryan’s diagnosis, an adrenaline rush of sorts kicked in. The first month, I was on a mission to understand as much as I could about his condition and prognosis. I read everything I could find on the internet about Aplastic Anemia. I read websites, blogs, medical journals, information on clinical trials, researched hospitals throughout the country, researched doctors, and watched pre-recorded webinars. The list goes on…
I also conducted many fruitless searches on anything that I could think may have been a potential cause of his condition. My theories ranged from it being something in his sandbox, off-gassing from the building material in the new home we moved into when he was 9 months old, the Zantac his doctor prescribed him for acid reflux when he was an infant, something from a plant outside that he may have put in his mouth, something he was exposed to at daycare, or something I was exposed to when I was pregnant. I was looking for something to help me make sense of it. I now realize it will never make sense to me.
The second month, I read every book that was a patient’s story on Amazon:
Anatomy of a Miracle: Drew’s Story by Jennifer M. D’auteuil
Drew had an unsuccessful round of ATG and then received a Bone Marrow Transplant from a non-related donor. He has had complications along the way, including a near-fatal lung infection, but is doing well today.
Danielle’s Story: A Daughter’s Battle
A heartbreaking story about 11-year old Danielle’s battle with Aplastic Anemia and her death due to complications of the disease.
Out of Nowhere by Esther M.R. Hougham
Esther recovered from Aplastic Anemia as a result of a sibling matched bone marrow transplant.
Blood Counts: My Triumphant Battle
Asa recovered from Aplastic Anemia as a result of a sibling matched bone marrow transplant.
I have since been in contact with Jennifer M. D’auteuil , the author of Anatomy of a Miracle: Drew’s Story, and have joined her Facebook page “BAND OF MOTHERS in the fight against Aplastic Anemia”. I have enjoyed Jennifer’s positive attitude and find that she is a daily cheerleader of sorts for AA patients and their families. I encourage you to buy her book and check out her Facebook page.
I have also continued to follow the blogs of several AA patients, including a blog about Nora Getchell, a young girl in New York. I found the blog, written by her mother, the night Ryan started his ATG treatment in the hospital.
Nora is in her third year battling AA. She initially received, ATG. It looked like she was responding for a while, but then her counts fell off again. She then received a bone marrow transplant last year, again things were looking good for a while, but in recent months the transplant failed. The donor provided additional stem cells and Nora was given a “boost” last month. She is still in the hospital, has developed several near fatal infections, and the graft of additional stem cells has officially failed. They are now trying to manage infections and coordinate a second bone marrow transplant, from a new donor, to occur within the next 2-6 weeks. My thoughts and prayers go out to Nora and her family.
While it is hard for me to read at times, Nora’s blog has given me a realistic idea of what a rollercoaster rider this disease can be. Here is a link to Nora’s blog if you would like to follow her journey: http://norasstars.wordpress.com/
During Ryan’s second month post-ATG, I also analyzed every aspect of his lab results from every blood draw on record. I created spreadsheets to track every result and corresponding graphs to look for trends and potential improvements in his counts. I combed through stories of other patients who had ATG and, where numbers were mentioned, I compared them to Ryan’s for any potential clues regarding his progress.
My theory so far is that he is having a slight “transfusion dependent partial response”. That isn't great. His neutrophil count has made some progress and seems to be hovering around 700 (still about half of normal). He has also had a few spikes in his platelet count, which seem to be followed by his T cells aggressively attacking them at a rate of around 11,000 for the first few days, and then leveling off at a “burn rate” of 3500 a day. When he was first diagnosed, he seemed to be burning through about 3500 a day, so this is where I get concerned that we haven’t made much progress. While it is encouraging to see the spikes in his counts at times, it is just as discouraging that his T cells seem to kick into overdrive once they realize his counts have gone up (rogue T Cells are our enemy and are the attackers of Ryan’s healthy cells). I have included updated charts of Ryan’s counts below.
Now we are entering the third month post-ATG. Upon completion of this month, we will have a
good idea of whether Ryan is responding to treatment. I have completed my research, I have read the
books, I have analyzed the data. We have an appointment Monday and Ryan’s blood
will be drawn to HLA tissue type match him for a potential bone marrow
transplant. Unless his counts
drastically improve this month, it is likely the doctors will ask us to start
considering a transplant, and they will start looking for a potential donor.
In the meantime, I am to the point where I feel like there isn't much I can do to help. I can pray that there is a perfect match donor out there if Ryan needs one. I can make sure Ryan has his medication twice a day. I can monitor his temperature for potential infections. I can keep him away from large public gatherings. I can try to help him deal with the anger his medication seems to be giving him. I can pray for a miracle. I can also love him more than he will ever understand. Other than that, I am left to deal with my constant “bad feeling” and look for positive ways to channel my nervous energy and deal with all of this.
Keeping my fingers crossed for a transplant match for your son. My grandson, Parker, was just diagnosed with AA on 9/1/13. We just found out his 11 month old sister, is a 10/10 match. Plans are now in place for a transplant within a month at Duke in Durham, NC. Both children will need numerous tests before we have a final date. Like you, since hearing about Parker's diagnosis, I have been searching for any and all information about this disease. I have encouraged family and friends to be tested as a potential donor for anyone. Hopefully, one will be found soon for your son.
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