Tuesday, April 19, 2011

Pick Up the Pace

I suppose I'm due for what is becoming my weekly post. Rest assured, the pace is about to pick up. The brief hiatus we have just enjoyed ends tomorrow. It was only a week, but a calmer than usual week. William and I head back to San Francisco bright and early in the morning to meet with the BMT (bone marrow transplant) team. William will have labs drawn to check the function of his B and T cells. This is the cell development that keeps him in isolation and out of public places. In talking with the nurse this morning, I learned that it is possible that the cell function has recovered enough to lift all restrictions. They are looking for a series of specific numbers/levels that signify his recovery. I also clarified that it is an all or nothing scenario: all restrictions remain or all restrictions are lifted. From the beginning we were told isolation would be 3-6 months and to plan on 6 months. So we are. Tomorrow is just the 3 month mark. We have no expectations, just hopeful anticipation.

Thursday and Friday keep us in Sacramento for an MIBG injection and scan and Echocardiogram. Monday has a CT scan and Tuesday sends us back to SF for another bone marrow biopsy. Then William gets a few days of break before check in on Monday in SF for his 5 day stay for the Antibody therapy. (see previous post for details). It's all good and one day I'll miss this part of my children's childhood. No, I won't!

On Tuesday mornings I participate in a phone-in support group for parents of recent BMT children in SF. It's an interesting experience and takes some getting used to the conference call environment. Each time I participate, I feel a little awkward as most of the family situations are ones I can't relate to. I am often reminded how fortunate we are with all the love and support we receive. We all have trials and struggles. Some are a result of our own poor choices, but others are simply unavoidable parts of life that can only make us stronger if we keep the right attitude and perspective. At the end of the day, I'm glad I have the trials I have and not someone else's. Many of the parents are single parents, the ages of the children varies from a few months to 17 or 18 years old. Some had the transplant due to cancer, some for other diseases. For one mother, this is her second child with cancer and the first one lost its battle. What amazes me is despite our various circumstances, there is an overwhelming sense of hope and resilience in these parents. As hard as life may be right now, it is only temporary. The sacrifices and struggles we face on a daily basis make the journey and anticipated end goal, short-term or long-term, so much more worth it.


  1. Hi Julie - I always love checking into your blog to share in your amazing attitude. It always lifts my spirits and makes me grateful. We do all have our struggles....I guess what is important is how we endure them. You and your family really go the extra mile in the "endurance" category. Glad William is doing so well and hope for the best in the coming months. Guess what - next week I am going to visit Austin. I can't wait. I hope there are still people there that I know!!! Love to you all...Nancy J.

  2. BMT support groups, cancer support groups, so many people who have suffered. I went last week to a women helping women dinner where the wife of my old teacher partner was honored for her fight with breast cancer than had metastisized to her hip so she has had a hip transplant. He is now retired, so I had no idea of their suffering. But it was womnderful to fight and to see women supporting each other. We raised over $1,000 to give to her just from our small dinner. Love you all-