The latest (February 16, 7 a.m.): We met with the bone marrow team yesterday for the second meeting. This meeting was to go over any remaining questions we may have, and to sign the consent forms to begin the process. We learned that the donor who is a match lives in Germany, which is why things are taking a little bit longer than we had hoped. He has given a blood sample for them to ensure that he will be a 9 out of 10 match for Dylan. They do not go below 9 out of 10 because of the graft/host problems. Dylan did not have a 10/10 match in the database of about 13 million people. They warned us again that the procedure alone could kill him. Our main question was: when do we get started? Although we will get a solid date in a couple of weeks, they were not able to give us one, other than to say they usually get started within an average of six weeks. They have to get the donor to pass a physical (there is one backup donor in case he does not); and they have to also get our insurance to approve the procedure (they likely will not, since it's experimental; so then a lot of back-and-forth happens, until the insurance company finally relents); and finally, they have to coordinate when an open room will be available in the bone marrow transplant wing. Since the procedure lasts for six weeks in the hospital, the best timing would be to start right after I run the marathon March 18 (so Dylan can be out of the hospital to cheer for me), and get him out of the hospital by the time his birthday in late May arrives. He would not be able to have a birthday party since he will still be in quarantine, but it would be nice to have him home for that day. We can have a birthday party for him before we start the procedure. We signed all the paperwork (including Dylan, who must also give consent), and now have to play the waiting game again for more solid dates and info. We still can opt out of doing it, up until the last minute, but now things seem a little more certain. Even so, we are not sure about putting Dylan and all of us through it. We also met with a social worker who represents the family during medical meetings. She was glad to know we have such great support systems among our friends, church, school and online. If we do go into this ordeal, we will need to call upon as many of you as are able to help us for support. The bone marrow unit is in the new hospital building that just recently opened. However, they do not have showers for parents nearby or a functional laundry facility for parents in the building. We went next door to the Ronald McDonald House for a tour, to see if we want to stay there for some nights instead of in the room (or at least keep the RM house as a second home-base). Dylan has grown increasingly irritable and hostile, with outbursts of rage over the most minor of insults occurring hourly, it seems. I can only imagine it's either a cumulative side effect of the chemo he is taking, or it's just plain outrage at all that he has had to go through and all he has been robbed of, although he can't articulate it. It is wearing Jana down, though. Please pray for a lightening of his mood, or strength for us parents, or both. Thank you. The boys were happy to both have a sleepover last weekend. Neither has had one for a while. We were sad to have our last CoachArt cooking session on Valentine's Day. Our coach, Stacy, is moving to Utah this weekend. We will miss her, although she promises to come back to visit and cook with us; and her friend, Brant, who has cooked with us a few times, says he will get set up with CoachArt and take Stacy's place, although he says he will not cook as healthily as Stacy! But we are happy for Stacy and this latest new adventure she is embarking upon. Chandler's current play ends this weekend. It is very funny! "Romeo and Juliet, or The Old 'You-Know-I-Really-Love-You-But-My-Father-Really-Hates-You' Blues" plays for the next couple of weekends at the Morgan-Wixson. Chandler plays Paris. You can get tickets here. https://web.ovationtix.com/trs/cal/1221/1328144400000/prm/ ------------------------------------------------------------------------------------ NOTE: Now that I have lost more than 100 pounds on the Brentwood Diet, I am running the L.A. Marathon March 18 to raise funds for cancer research. I will donate the funds to the Pediatric Brain Tumor Foundation that supports research into a cure for what Dylan has. There are many worthy charities and it is hard to choose just one, but I think this is the best use of the funds we raise. More informative links are below, but here is the link to donate funds: http://superdylan.chipin.com/team-superdylan-la2012 I mention "we" because a few people have said they also wish to join "Team SuperDylan LA2012." There are no team meetings, but if you want to coordinate with me on training and meet up the day of the race, please contact me. Since so many of you are not in L.A. or do not want to run a marathon, you can be anywhere and run any race, just point people to the ChipIn link below to help the team raise the funds. I am using Hal Higdon's training program, the first link below.
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