November 24th, 2004
Giving Thanks
It might seem that it would be difficult to give thanks when my son was diagnosed with cancer a month ago, but it is actually quite simple. My life is filled with riches, both physical and spiritual, some of which I’ve worked very hard for and others which seem to show up for no particular reason at all.
I am thankful for the support in words and deeds of family, friends, and strangers
The outpouring of support from friends, family, and complete strangers has been astounding. I hesitate to mention even a single name since I would leave out so many. When Spencer and I were staying in the hospital, friends appeared to help Rachel take care of 9 month old Jacob, stop and spend an hour with me in the hospital on the first night when I could barely speak without crying, drive Rachel to the hospital every day, stay with Spencer so Rachel and I could leave the hospital one evening and have dinner out at a restaurant, stay with Spencer so I could take a shower in a decent shower (I have many good things to say about Children’s Hospital of Austin, but the showers and couches in the rooms leave something to be desired), and generally keep our lives going when we were overwhelmed. For two weeks after we got out of the hospital, I did not cook. Visitors came to talk and brought food. Classmates from school sent cards and art projects. The refrigerator was overflowing with sustenance. The kids from Spencer’s religious education class sent get well cards. Friends call to chat and check if we needed anything. When Spencer’s hair was falling out and we made a trip to the grocery store, a stranger offered a hug and a prayer. A friend from my men’s group came and shaved my head while his son video-taped it (clips available one of these days when I edit it down in iMovie). Family from out of town helped slightly modify our Thanksgiving plans so we could still have visitors, but manage everything. Spencer’s teacher from school sent homework to give us something to do. Spencer’s martial arts teacher has offered private lessons for no cost, and is integrating him back into the group class at a speed that works for Spencer. A family from church who I had met briefly once before, brought food, books, games, and homeschooling material to help me get started on Spencer’s education until he gets back to school (possibly in January). The men at my Men’s Retreat offered the perfect balance of compassion, interest in Spencer’s status, and distraction. Another friend has offered to shave his head and join the bald solidarity group for a while if Spencer would like it. A neighbor is taking thoughts and images of Spencer to Amma for some prayer and healing thoughts.
I am thankful for modern medicine and research
Before 1948, the leukemia that Spencer has would have been a death sentence. Thirty years ago, the 5 year survival rate was about 50%. Research into curing leukemia, rather than only making terminal patients comfortable, was pioneered by Sydney Farber. Ongoing research by a number of doctors and organizations, up to and including the current Children’s Oncology Group. We are participants in a study (CCG-1991) now being run by the COG. On the day we first brought Spencer to his regular doctor, we were completely unconcerned. Dr. Cardwell of the Austin Regional Clinic went ahead with several tests “just in case” and rapidly reached the conclusion that we needed to see an oncologist. After reading many stories of delayed diagnosis, I am particularly thankful for his thoroughness.
I am thankful for laughter
Throughout the first month since Spencer was diagnosed, we have had Jacob’s laughter. Jacob is our 9 month old boy, Spencer’s little brother. Jacob is a constant treat. He’s an easy baby except for being terribly easily distracted. It is nearly impossible to travel anywhere with him because the slightest noise or interesting change of scenery will distract his attention from much-needed food or sleep. And he laughs. He laughs with wild abandon at being tickled, or getting raspberries, or getting attention from his big brother.
Now, Spencer laughs again. We’d been missing that sound around here until Monday of this week. Some combination of the disease, the stress of treatment, and the steroids had pretty much taken away his delight and humor. This week, that turned around dramatically with jokes, rhymes, hysterical laughter, and warm affection. Monday, it was hard to get through his private martial arts lesson because he couldn’t stop laughing about asking if Tukong had belts that are chartreuse or vermillion. Yesterday and today, he’s been teaching relatives to play his newly discovered favorite card games. His laughter just lights me up. I missed it.
Happy Thanksgiving.
December 25th, 2004 at 4:00 pm
Rob,
I’ve been sitting here this afternoon reading your blog. We met briefly in the hallway at Live Oak a few months ago while we were both waiting for our boys to get out of RE. I’ve been aware of your family for a while because my daughter, Anna, also uses a wheelchair at times. Right now she’s getting around with just her crutch. Anyway, I noticed Rachel because I’m always aware of other people who use wheelchairs.
Our family has faced it’s share of challenges over the years and I can really relate to much of what I’ve read so far in your blog. We’ve spent many, many nights at Children’s Hospital in Austin. My daughter sees Dr. Lockhart for long term drug therapy to help her bones so we’re pretty familiar with that office and sitting around the infusion room. What really touched me about your entry on thankfullness was how Jacob brings laughter to your family. We have experienced this in our family too. When Anna was diagnosed with a chronic bone disorder at 9 months old, our world fell apart. It took years before we even felt having another child was a possibility because we were so busy taking care of Anna. But then when our twin boys were born, a lot of healing happened for my husband and I. Even though Anna’s medical challenges were pretty much a “normal” part of our lives by then, we had not anticipated how much joy and laughter would be added to our family with these two new members. Although there were quite a few times while I was pregnant with the boys that I thought “What were we thinking trying to have more kids?” now I know that even on the hardest days, it is all worth it.
I could also relate to your comment about 4 weeks being as far as your long term planning could go. Ditto for our family a lot of the time! Having a family member with a chronic illness changes a lot about planning and control.
Anyway, I’ve really been touched by reading your blog. Thanks for your willingness to share it.