What is a bone marrow transplant and how does “it turn your life upside down”? Does life get more upside down than having a three year old on chemo for 2 ½ years, a broken wrist, constant blood transfusions, living in the hospital for the past month, and now morphine to control his pain with no idea when we might get out? The answer is yes.
The week before the bone marrow transplant, they give super high doses of chemo to kill off all the current cells in the bone marrow. Then they will give Jenson Sydney's healthy bone marrow so his body will replace his faulty marrow with hers. Because they kill off his entire current immune system, the risk of infection is obviously life threatening. They used to keep people in a bubble for several months after, but now they have special floors of the hospital with special air filters and rigid germ protocols. No visitors are allowed except the child’s parents, and they have to scrub down like they are entering a surgery room prior to going in.
They “try at all costs to avoid doing bone marrow transplants during cold/flu season” to quote Dr Cavalier. But we have no choice… we have to do it now.
It basically means Doug and I will also need to be in a type of germ quarantine with no contact with anyone, especially the main way viruses currently enter our family – through Sydney being at school. Sydney will be giving her bone marrow and after she is out of the hospital won’t be able to be with her family for 1-2 months. This is the part that shatters my heart to pieces.
Sydney will be well cared for living temporarily with her grandparents, but it is still going to be hard emotionally for everyone. I am thinking of creative ideas to remind her each day how much she is loved.
This whole thing is such a mix of feelings - fear of the intensity of what lies ahead, sadness our family will be apart, hope for healing.
We are ready for an end to this rollercoaster ride from hell. Right now, the rollercoaster is starting the climb up our steepest hill yet. We just hope after this it comes to a stop and our entire family can safely get off!
Kristin
Time to Remember
12 years ago
At the end of 2011 draws near, many of us will take the time to reflect on the past year- good times and bad, our trials and achievements. Whether you're a patient fighting through treatments, a parent who is battling for your child's life, a physician who is waging the war in the lab and exam room, a family member or friend helping someone you love soldier through the challenge of their life, or a donor contributing financially to the crusade - you are all Histio Warriors. That spirit, courgage and bravery are embodied in all of us and are reflected in these Histio Warriors. Please HELP us to ensure that this battle is not fought in vain. We warriors, patients, parents, physicians, family, friends and donors, can help forge the path to victory over these rare disorders.
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