Recognizing Recovery Reality

It finally happened. After 75 days as inpatient @ CHOP, Oceana's body produced a high enough ANC to allow us the luxury of "hospital freedom." Monday morning, August 16th., we received the great news. Discharge papers, two scripts and future calendar dates were given to us as we packed what seemed to be enough belongings to fill a small apartment. Having missed the day of our family reunion (Aug. 15th), Oceana and I immediately jumped in the car and headed north for Maine, hoping to catch family members still there. Trish couldn't join us due to work responsibilities. Exhausted, we arrived on Tuesday, midday, and managed to catch Oceana's grandparents, aunts and uncle before they headed back to Hawaii. Mission accomplished! Both Oceana and I were grateful that we managed to see some family, even though we didn't get to see everybody. Those of you that we missed, we really did try to make it; sorry that we missed you.

Monday, August 23, we returned to CHOP for the scheduled CBC. Less I forget to mention, Oceana had needed and gotten platelets in Maine (she had fallen as low as 6.) So, it was not a surprise to learn that she was going to need platelets and red blood after her CBC results on the 23rd. What was surprising to learn was that our doctors had convened at their weekly meeting with the Leukemia & Lymphoma Society team and decided that the cons outweighed the pros for Oceana to endure a fifth cycle of chemo. Relieved, I both accepted and agreed with this decision. Another phase of chemo would seriously compromise Oceana's well being by creating a neutropenic state that could last over 90 days, compromising her immunity and potentially allowing life threatening infections. Since she has achieved remission, I think it is wise to "quit while she's ahead."

Now, Oceana, Patricia and I are recovering from what I call "post traumatic hospital reality." Now that she is "recovered" (haha, not really, as Oceana is still very dependent, receiving both platelets and red blood at least once a week) we have to resume our lives and accept our new reality. The medical bills, our decided relocation in order to be closer to both family and CHOP as well as to live in a non toxic environment (I am convinced that Oceana's condition was caused by environmental factors) and the stress of trying to manage it all while returning to our daily grind. While we were in CHOP during our last stay, it had become routine to go to bed late and sleep til two PM. This always happens towards the end of Oceana's hospital stays. This time, however, it became a bit more difficult to adjust. Three weeks later, we are finally returning to a diurnal internal clock. Still, our reality is hazy as we pick up the pieces of our broken life and continue to try achieve our goals. It will take five years of continued remission before CHOP will declare Oceana cured. I prefer to believe that she is cured now and want to protect her from any and all toxic exposure. So much is at stake here, after all, we are talking about Oceana's life.

I do not have much more to say. I realize that this blog has morphed from Oceana's perspective to mine. She is not into this at this time as she would prefer to play on her ipad, start books and not put them down until she finishes them, play playstation games and interact with family. We want to thank our fantastic families and friends for all of the support we have received and apologize for any misconceptions that may have occurred along the way. This has been a long, intense journey that has not yet ended (still waiting for Oceana to recover completely by making her own platelets and red blood) although we can now see a silver lining etched in the horizon. "Look out my window, what do I see? Crack in the sky and a hand reaching down to me." - David Bowie

Lastly, to our friends at CHOP: Please know that Patricia and I look forward to that New York trip with Ricky for example, and to sharing brick oven pizza by the pool with Sarah, we hope for the complete recovery of all the children whom are enduring treatment or recovering at home. I do not understand why life has created this path for us but know that together we have the strength to see this through. We want to help in every way so please contact us if needed, or if you just need a person to talk to. Thank you for your compassion, advice, sharing of knowledge as well as lending an ear. In the thick of it, only those afflicted can really understand what we have had to endure; We wouldn't want anyone else to have to!