It's been six weeks since our last email update. At that time, we had just learned that we would not be going to Boston in July for radiation as planned, and that Matthew would need additional chemotherapy to put the tumor back into remission. Let me fill you in on what's been happening since then...
How's he feeling? First, and most importantly, Matthew is feeling great these days. He has been back in chemotherapy since July 21 and is now in the middle of the second cycle. Each cycle lasts approximately 4 weeks. We've been driving to Baltimore once a week for outpatient treatment. On the third week of each cycle, he gets hospitalized for three days of inpatient treatment. He is receiving a different combination of chemo drugs than before; yet mercifully he is tolerating the treatment with practically no discomfort or side effects.
The only problem he has experienced is that these drugs have more of an immunsuppressive effect, which means that his blood counts go down and he is at increased risk for fever & infection. At one point last month, he developed a fever and needed to be hospitalized for nearly a week. Obviously this was a major drag and we're told it is likely to happen with each chemo cycle. At least next time, we'll know the drill.
How are the rest of us doing?: Despite the tough news this summer and the major upset in our plans, we tried very hard to enjoy the remainder of the summer. Matthew qualified to swim for his team in the Divisionals Meet. We enjoyed a great Nationals' game. We escaped for a long weekend to the Homestead Resort for some R&R, fishing & horseback riding. We had nice visits with our cousin from Connecticut end and our former au pair from Denmark. Danny attended soccer camp and also spent a week in Philadelphia with Uncle Carl, Aunt Julie and his beloved Cousin Emily.
The highlight, however, was our 5-day getaway last week to Woods Hole, Mass. , where we usually go each summer to visit Jon's parents. We enjoyed perfect New England summer weather. We went to the beach & relaxed. We went fishing one day, caught loads of bluefish & fluke, and enjoyed a major fish dinner with friends. The trip was capped off by a once-in-a-lifetime visit to Fenway Park, where Cousin Josh Klevens arranged for us to receive VIP treatment. We were allowed on the field and in the dugout - and the kids (major Red Sox fans) were escorted back into the private area to meet Johnny Damon (that's him in the photo!), Trot Nixon, and many of their other favorite players. We then watched the Sox beat the Tigers 9-8, from spectacular skybox seats. Danny had the best line of the evening, as he turned to me and said, "Mom, can it get any better?"
This past Tuesday, Danny started fourth grade and Matthew attended his first day of high school. Our school (JDS) continues to support us in every way. They have arranged things so that Matthew can take a shortened schedule (Geometry, English, World History, Music and Study Hall). He will attend class as much as possible this semester, with Montgomery County providing home schooling during those periods when he is at home.
What's the plan? Our recent experience tells us not to put too much faith in long-term plans. However, the tentative plan is that Matthew will undergo about six more weeks of the current chemo regimen, which will bring us to mid-October. Hopefully the tumor will be in remission at that point and he will be ready to receive high-dose chemo with autologous stem cell rescue. This requires transfusing his own stem cells back into his body. (His stem cells have already been reserved for this purpose.) This treatment is pretty intensive and will require him to be in the hospital for at least a solid month. Sometime after that (December? January?), it is likely that we will bring him to Boston for radiation treatment.
What help do we need? We are accepting food once again. It really helps to have a prepared dinner ready on those days when we are gone all day in Baltimore receiving outpatient treatment, as well as during those extended periods when Matthew is inpatient and Jon & Danny are home alone. All food is being coordinated by Carol Feder, who can be reached at feder@comcast.net. I should warn you that we are working with a nutritionist to provide Matthew with a special, healthy diet, so there are some restrictions as to what he can and can't eat, but it's not all that complicated and Carol can explain it to you.
Other than asking for food, we're doing ok for now. The tough part for us is no doubt coming up later in the fall when Matthew will require more extensive hospitalization and our family will be physically separated from one another. We'll definitely need more support then and will ask for help as that time approaches.
Finally, just want to thank you again for keeping us in your thoughts & prayers. We look forward to hearing from you. (You can send us a personal email by clicking on one of the links listed above - or you can sign our guestbook.)
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