I recently mentally committed to doing NaBloPoMo this year (again!). I’ve never completed a NaBloPoMo and this year started out no differently. I realized November had begun and a post was due around 10:00 the evening of the first. Oops!
There is lots going on and much to write about, I just have not had the discipline to sit and write. Frankly I have not had the discipline to do much, as of late. Still digging myself out of a slump and trying to ‘live’ this life we now have. Gregory’s health has been incredibly stable *knock wook*. He has been receiving IVIgG every four weeks and has yet to catch a respiratory or viral illness. Granted his exposure has been kept to a minimum. At his last clinic visit his Doc and I discussed whether or not his antibodies would return if he was never sick. Meaning…. how can we challenge the function of his antibodies if he is not exposed to anything. Which means that we have loosened the reigns even more. Since that visit two weeks ago, Gregory has played mid-day at a McDonald’s Play Place and been to two LARGE school functions for AnnMarie’s elementary school. Plenty of exposure in those three events and he has not developed any cold/flu symptoms. At his next visit on the 17th, we will also be taking another look at his IgA and IgM levels. Which can help to create a better picture of what might be happening with his immune system. I’m not expecting anything to be different that it was in June. The support he is receiving with monthly IVIgG is working to keep him out of the hospital and symptom free. I can’t ask for much more than that. He has been free of immune suppressant drugs for three months. Over that time frame his eosinophils (another cell among your white cells) have been slowly creeping up. These cells indicate inflammation in the body. This could indicate that Gregory is getting ready to have a GVH flare. ‘Could’ being the operative word. Which does not mean I’m casual about it. I’ve read too much on GVH and heard account after account of patients that have really bad flares between years 2-5. With GVH it can strike the body anywhere. Not just where Gregory was originally afflicted. With many areas of the body, if GVH strikes, the damage done is irreversible. Catching and treating it early is key. I may be a little hypersensitive about monitoring him, but irreversible organ damage is not something I want to have happen. Just another piece of vigilance.
I am a wee bit over committed. Over committed mentally, but certainly not physically or time wise. In order to help settle my heart, my mind and my body I’ve taken up the practice of Ashtanga Yoga at Spokane Yoga Shala. I am loving it. It is bringing me an awareness of my body and how I have carried these last several years worth of stress and anxiety. Could not be happier with the studio and it’s instructors either.
We are very lucky to have an amazing pediatric palliative care team at Sacred Heart Children’s Hospital called the Sunflower Program. They hold a pediatric palliative care conference in the fall and this year’s conference is Thursday night and Friday. As an involved parent, I was asked to share our story with the conference attendees. This conference is for doctors, providers of care, nurses and patient families. I attended last year and it was a great event. Below you will find our story that will be shared on Friday. This is just a snippet of our story, but hopefully it expresses to the audience how our family fits within the palliative care community.
I’ve been asked on several occasions to share our story. This is the first time I have tried to convey our story in a public setting. If I were to sit down and write our story, it would be many pages long. One day I will. I will write a narrative of our timeline. For now, I am sharing the bits and pieces that are applicable to the audience that will be hearing it. Which is sometimes very hard to figure out what the focus and intent is of sharing our story. This seems to be my biggest hurdle. Yet, once I have a point to focus on, the words flow.
Hopefully I’ll be back to share something tomorrow. It would be very rewarding to blog everyday for a month. I know my brain could use it.
As always, love, love, love….
In June of 2005 we welcomed our last child to our family. Gregory Miles Bibb. He was preceded by AnnMarie in 2002 and Curtis in 1998. We were now a family of five. Each member of a family has unique attributes. Gregory’s are light and grace. He truly is the light of our family.
In February of 2009, Gregory developed a resistant cold which lead us to an emergency room visit for IV fluids. Gregory did not respond to IV fluids which resulted in a CBC. With this one simple blood test, our lives were rocked to their core. Gregory was eventually diagnosed with Juvenile Myelomonocytic Leukemia, at the tender age of three. The nature of his disease meant we would go immediately to bone marrow transplant. Do not pass go, do not collect $200. Chemotherapy alone will not destroy this disease. We began the bone marrow matching process to see if the siblings were a potential bone marrow match. They were not a match and we spent six of the LONGEST weeks of our lives, anxiously waiting for the phone call that would notify us of the possibility of saving Gregory’s life. The magical phone call came on April 21, 2009. We had a 10/10, 23 year old female match. Gregory’s work-up was scheduled to begin May 12, 2009 with transplant on June 10, 2009. In the meantime, he had been receiving daily, oral, low dose chemotherapy to keep his disease at bay. He also received supportive platelet and red cell transfusions. We were in clinic no less that twice a week. With a handful of admits thrown in for respiratory infections.
Bone marrow transplants are not available in Spokane. Gregory and I left Spokane on May 11, 2009 and traveled to Seattle, Washington. Seattle Cancer Care Alliance, Seattle Children’s and Seattle’s Ronald McDonald house became our home for the next five months.
Due to the intensity of treatment with a bone marrow transplant, we were introduced to the idea of palliative care at our first conference with the team at Seattle Cancer Care Alliance. Seattle Children’s Mark Power was an integral part of our BMT team and our stay at Seattle Children’s. I am forever grateful for the role that Mark played in Gregory’s transplant experience. During our stay in Seattle Gregory spent 12 plus weeks inpatient. Living in the hospital became a way of life.
We returned to Spokane in October of 2009. Gregory remained incredibly medically fragile. During Gregory’s first year post diagnosis, we spent over 26 weeks inpatient. One thing Gregory’s team of medical care providers helped us to understand is the concept of ‘living’ in the hospital, instead of just ‘staying’ in the hospital. While having to be inpatient is a bummer, we have completely surrendered to the fact that when he is inpatient, it is where he needs to be.
This Odyssey has changed our family and our lives. Each and every one of us. When a child is diagnosed with a life threatening condition, the entire family is diagnosed. Gregory currently has no evidence of his original diagnosis of JMML. Yet, his health status is complicated and incredibly complex. Due to the intensity of his treatment and his tender age, we know not what tomorrow will bring. Each milestone is anticipated with bated breath. Each clinic visit, every 28 days, brings a sleepless night before and nagging thoughts of “Has it returned?”.
The greatest myth about childhood cancer is that we will one day be ‘done’. I tell people, ‘Like dishes and laundry, childhood cancer is never done.’ Thankfully we are part of a very strong community, not only childhood cancer families, but families that have life changing medical diagnoses with their children. The richness of this community is what keeps me engaged, supported and validated. With ever so faint glimmers of hope.
“We may not live in the past, but the past lives in us.” ~Samuel Pisar, Holocaust Survivor