As the clock strikes midnight, the fact that Ryan was diagnosed with leukemia exactly four years ago today does not escape me. FOUR years ago, we heard those horrible words, "he might have leukemia..." "Yes, he has leukemia. I'm sorry..." FOUR years ago, we were reassured that he had the "good kind of leukemia," the "good type of pediatric cancer." What a bunch of fuckin' HORSESHIT. There is NO good type of leukemia or cancer. ...Especially for a 22 month old baby. ...FOUR years ago, we were told that he had an 85% cure rate, and that he was standard risk, but on the high side, due to his slow early response to treatment. We were told that he would be treated on an augmented, or more aggressive protocol to close the gap and keep his cure rate at 85%. Little did we know then that he was MISDIAGNOSED, and that his leukemia was actually a much more aggressive type, placing him in the high risk category. So we embarked on a three year, four month treatment plan of consecutive chemotherapy. We thought it would cure him. We had faith in the doctors and in the treatment. We didn't realize then that those three years and four months were a cake walk compared to what would begin ten days after he completed treatment and was diagnosed with relapsed, HIGH RISK leukemia. A whole new type of hell. RELAPSE.
He had to endure much more brutal regiments of chemotherapy, which kept him in the hospital for weeks at a time and almost killed him. A week before his bone marrow transplant we were told that the high dose chemotherapy had not completely worked.... They had found a small patch of leukemia that contained 20 - 30% leukemia cells in his marrow. The other side of his back was completely clean. They told us that they weren't sure that his leukemia would ever completely respond to chemotherapy, and that he might not survive further rounds of aggressive chemo. They were stunned that the high dose chemo had not cleaned his marrow and killed all the leukemia. They recommended proceeding with transplant but warned that he would be at high risk for relapse due to the fact that he was not completely in remission. We were also warned that the radiation and chemo would also put him at higher risk for secondary cancers. However, they felt this was his only option for a cure. Perhaps the high dose total body irradiation and final super high dose of chemo would do the trick, along with his donor's marrow and the new immune system he would have. ...We agreed and proceeded with the treatment. He endured a lifetime maximum dose of radiation therapy in just four days. For four days, he was placed under i.v. anesthesia twice a day while the COH Radiology Team worked hard to destroy any remaining leukemia cells in his little body. On the fifth day, he received another staggering dose of chemotherapy. Four days later, he received new life in the form of his donor's marrow.
Thirty days after his transplant, his bone marrow results were completely clean and free of leukemia.
We REJOICED!! Cautiously, but we rejoiced anyways.
EVERYday is a blessing for us, even the shitty days.
Everyday that he is here and smiling and happy and that our family is together, it is a blessing. A true blessing, even for a family of agnostics.
The other week, at his last appointment, I told Dr. Pawlowska that we were ecstatic about his progress and recovery, but still... She finished my sentence because I couldn't find the words--- we "live in a constant state of waiting for a bomb of bad news to explode." I hope it never happens. But that is the reality that cancer moms & dads & kids live with. LIKE IT OR NOT. THAT IS THE REALITY. I am a glass half FULL type of gal. I am usually upbeat, and I always, always try making lemonade when I'm dealt lemons. But truly, that is the reality that pediatric cancer families are faced with. Especially the ones with either high risk or relapsed kids. I try not to dwell on it. I push it away constantly. But it is always there. Lurking in the dark corner, or in the closet I try to lock it away in. I try to live life to its fullest and also to live in the moment. I am pretty successful considering the circumstances. But I am not perfect. I remind myself almost daily that anything can happen to any of us anytime, any day. That is how I rationalize and make sense of a senseless situation. Perhaps it is better to live that way, appreciative for everything and for the simple things in life... But it never takes away the fact that our kid had cancer and we don't know if it's completely gone or if one stupid fuckin' cancer cell survived and its trying to replicate out of control again. ...I also remind myself of kids who have been given a 5% or 10% prognosis and have not only survived, but THRIVED. I also think of those that didn't make it. It makes me feel so ashamed of my anger sometimes.
...I want to GENUINELY say, "Okay, time to shift gears and stop being sappy and sad; time to shift gears and be happy and celebrate," but I can't. Not tonight. Maybe I will go to sleep and wake up feeling completely different tomorrow, but right now, this is how I feel about our "cancer journey" (that sounds so cliche; "nightmare journey through effing hell" sounds more appropriate). Tonight: Am I angry? YOU BET! Wouldn't you be? Aren't you? Have I lost sight of all that we have to be grateful for? ABSOLUTELY NOT. ...I just need to rant and get rid of some angst before filling my glass back up.
I will shift gears though, and definitely talk about what I had intended on posting about, instead of such a heavy vent about the past four years....
Tomorrow, Ryan will pass his four year anniversary by joining Chief Beck and LAPD's Team in Training team (aptly named "Team LAPD;" Ryan is an honored teammate) at Chief Beck's monthly press conference. Ryan was invited to join Chief Beck as he highlights Team LAPD's involvement with raising funds for blood cancer research through the Leukemia and Lymphoma Society's Team in Training program. They will be running and walking the LA Marathon and hope to raise $35,000 for leukemia, lymphoma and multiple myeloma research. To support their endeavors, please visit Team LAPD's website by clicking here.
Chief Beck will also be highlighting our annual LAFD/LAPD St. Baldrick's Foundation Event, which is scheduled to take place on March 12. The St. Baldrick's Foundation is "a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives." In short, they fund more in childhood cancer research grants than ANY organization except the U.S. government. WAAAY more. For example, the American Cancer Society only contributes less than half of 1% of their annual donations to pediatric cancer. The National Cancer Institute only allots 3% of their annual budget to pediatric cancer research. Pretty grim & paltry numbers, huh? That's why we are so committed to raising funds via St. Baldrick's. To support our endeavors, please visit Team Ryan's St. Baldrick's Foundation webpage by clicking here.
Ryan also has a regularly scheduled, weekly follow-up appointment with Dr. P. tomorrow at COH, so it promises to be a full day. I should probably go to bed now so that I don't show up to the press conference with bags under my eyes, lol...
By the way, it was GREAT stopping by and seeing our TOP family today!!! Ryan really enjoyed the trip out there.
...And thank you Hester, Amy, Candy, RoRo, Jason and others for helping me and reminding me to start taking better care of myself so I can keep taking care of my family.
Thanks as always, for stopping by.
P.S. Please DON'T worry about me, I'm just venting. I don't need counseling. I just needed to get crap off my chest and need some sleep. Tomorrow will be an AWESOME day!!!! I know it...
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