July 11 2000

UpDate On Chris:

I thought I'd send this group E-mail to update those of you that have been aware of my son's battle with leukemia over the past several month's, but may not be aware of his current status. I've felt kind of guilty about not personally updating those of you that are aware of a lot of the past bad news without sharing some of the more recent good news.

The present situation is that he's probably doing as good as he possibly could for his particular diagnosis and treatment. He's actually been home for the last several weeks after 6 weeks in the hospital and is continuing his treatment as outpatient. A week ago Friday he had a bone marrow biopsy to determine his progress and the results indicate that he is either in or very close to being in clinical remission. Yesterday they finally stopped the first round of Chemo-Therapy (Arsenic-Trioxide) after 42 days of treatment, and will let him recover for 2-3 weeks before starting the next round of 25 days. He still needs platelets every day and whole blood about every other day, but should start getting his own counts up over the next several weeks after stopping the Arsenic. The next plan by protocol is to give repeated rounds of 25 daily treatments of arsenic with 3 week breaks in between until he gets into a molecular remission then do a bone marrow harvest for a autologous Bone Marrow Transplant (that's when the patient receives his own bone marrow rather than from a donor). Chris should be able to do the successive 25 day treatments as outpatient and will probably be going to Boston for the transplant.

Physically and mentally, Chris is actually doing real good right now. He started driving again several days ago and will actually be making most of his daily trips to RI hospital by himself. Deb or I will probably still go with him once a week to discuss treatment with the Doctors. He's still pretty tired most of the time but should start getting his energy back after he starts building up his own blood counts. One of the good things about the Arsenic, which isn't technically chemo-therapy, is that it doesn't breakdown the immune systems like traditional chemo, so we don't have to be particularly concerned about infections while he's recovering.

We (Debi and I) want to thank all of you that have offered help, support and prayers as well as of all of you that have helped with our fundraising for this years Leukemia Cup Regatta. Yes, we are still doing it, thanks to Chris and Deb pushing me to launch INFINITY without the usual preparation. We still have a month before the race and actually are doing pretty good in the fundraising despite little effort on our part the last few months.

For those of you that may not have been aware of Chris's recent medical history but that may be interested, I'll provide some back ground:

Chris was initially diagnosed with Leukemia on Nov 5th 1998. He has APL (Acute Promyelocitic Leukemia) which is a subtype of (AML) Acute Myeloid Leukemia (sub type M3). APL is suppose to be one of the more treatable forms of AML. His original treatment consisted of ATRA (Al-Trans-Retinoic-Acid), a pill type medicine that only seems to works on APL, that got him into first remission, followed by 3 rounds of heavy chemo and continued maintenance on ATRA. This protocol has had an 80% record for long term remission for APL. Chris remained in remission for 14 months but fell into molecular relapsed this past March. Molecular relapse is when the leukemic cells are detected in a marrow sample by a highly sensitive test (PCR=Polymer-Chain-Reaction) but no physical symptoms are present. Chris started a different chemo protocol that has had high success with getting molecular relapsed APL patients back into full remission but fell into full clinical relapse in May. ATRA was no longer an option because Chris had built up tolerance against it. The most successful treatment for full relapsed APL patients has been the Arsenic-Trioxide protocol that started in trials in the US several years ago (it had already been successful in China). Although this protocol has been highly successful in trials, it isn't FDA approved yet and we had to get permission from the NCI/NIH to use it on a compassionate exception basis. The protocol calls for an initial round of 14-60 days of treatment to get into a clinical remission followed by up to five 25 day rounds to get into a molecular remission with 2-3 weeks between rounds for recovery, followed by a Bone Marrow Transplant. All of Chris's treatments are somewhat complicated by the fact that he also has a congenital heart defect for which he's had two corrective surgeries for (at 4 months and 8 years). Most of the traditional chemos are highly cardio-toxic and his treatments have required some modifications and closer monitoring for potential heart failure. That's one of the reasons that he would probably not ever be a candidate for a donor type Bone Marrow Transfer that have higher chance of long term success but are also have higher treatment risks.

Other than the actual Bone Marrow Transfer, the worst part of his treatment should be over with. His initial four weeks on the arsenic included many traumatic episodes including severe nose hemorrhages, some brain hemorrhaging and frequent bouts of severe muscular/skeletal pains, but most of that was due to the leukemia and went away once the arsenic started working. He should be able to continue the follow-up treatments as out-patient.

Again the main reason for this e-mail is just to make it easier for me to share some good news with those that have been aware of all the bad news and to thank those that have provided support in anyway without missing anyone.