Coming Home

It would seem that being home after 13 days in the hospital would be such a relief. We were so ready to get out of there. Coming home was extremely difficult. We were nervous about everything. There were no more nurses or doctors to let us know what was normal. Although they were only a call away, we tried to save only our most urgent concerns and questions for them. It wasn’t just the health concerns we were having, but we really were hit with the weight of it all as it came crashing down on us emotionally. We were all randomly lashing out from time to time for no apparent reason and then we would find ourselves crying over nothing. It was very tough. We had a hard time keeping two thoughts in our head, but were able physically to do things. It was so strange. It must be like post traumatic stress syndrome. At one point I said to Chris, “I feel like I just can’t think straight. I feel like I can’t get anything done, and yet I am totally capable. Maybe it is time to let people know we can make dinner for ourselves.” He turned to me and asked me if I just heard what I said. Our family and friends have been so good to us and have provided for our every need over those first few weeks… and continue to do so. Honestly I don’t know what we would have done without the help. We are grateful to you all for everything from faith to food and all the help in between.

Will seemed to do very well from the start. One of our duties here at home is to administer a daily shot of Neupogen until his numbers come back up. It is a bit like an insulin shot, delivered by a short needle just below the skin. It helps boost the white blood cell production in the bone marrow, but it also causes pretty severe bone pain as a side effect. The headaches and lower back pain were excruciating. Again, the UCSF doctors had warned us that there would be times when we would most likely end up in the ER with Will. This time we went in to get pain medicine because taking Tylenol masks fever and Motrin thins the already fragile blood. It was terrifying to walk into a germy ER, a place where sick people go to get better, when your son is at his most susceptible. We made it though and he didn’t get sick. He was able to get some pain medicine and find relief. The bone pain lasts only a couple of days and is gone as soon as he is finished with the shots.

A round of chemo for Will is 21 days. The first 3 days are chemo in the clinic. The first two days he is in the clinic about 8 hours. The third day only takes a couple hours. The Neupogen shots start on day 4 and are given until day 7. Day 8 is another short day of chemo in the clinic and then the shots resume on day 9. By day 14 his numbers come up and he no longer needs the shots. Day 15-21 are pretty normal days for him and he is able to get out a little and live fairly normally. They are the days we look forward to. Will’s second round went very well. He maintained a descent amount of energy and was very happy. In fact, we ended up calling the clinic to tell them things seemed to be going too well. We were told that children are very resilient and it is good and normal. It is when things don’t go well that they worry.

While Will is in the clinic for his treatment those 3 days we stay at the Family House. The Family House is a an organization set up to take care of pediatric cancer patients and their families while they are in the UCSF hospital or at the clinic. It also serves many other families with sick children. They provide housing and a safe place for overwhelmed families. They have two apartment houses very close to the hospital. We feel that we are home when we go down to San Francisco and love all of the people we deal with there.

For the second round of chemo we took Hunter and Matt down with us. Mary Kate had work and a Year Book camp down in San Diego so she stayed with some friends. We had a great trip. The Family House provided us with tickets to some of the local attractions. We went down Monday to get situated and on Tuesday Vicky stayed with Will in the clinic while Chris took Hunter and Matt to the Academy of the Sciences and then went on a bike tour through the city for several hours. They had a great day. On Wednesday Chris stayed with Will while Vicky took the boys to the California Academy of the Sciences and then went to the beach to play in the surf and collect sand dollars. Another amazing day. We look forward to being able to do these things with Will and Mary Kate and Sam too. The 2nd round trip was wonderful. Will tolerated the chemo well and the younger boys had a great time.