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We're home. Matthew's doing great. Ali's flying into town. We look forward to having a quiet weekend, but we would love to hear from you!

HOME!!!!

Miraculously, Matthew's counts shot up overnight and he was released this a.m. More news later - too much to do and enjoy!!

Still here

Hospital's getting old right about now. On the positive side, Matthew's feeling good. Fever has been normal (or close to that) since yesterday. On the negative side, his blood counts are still low and they're not going to release him (us) until his counts recover (which doesn't look like it's going to happen so soon). Today, our friend Ellen E. came to visit, bringing Matthew's backpack and my computer. I think I got the better end of the deal, since I'm doing email right now and Matthew's working on formal geometry. He's learning about all the various permutations on if-then statements and is coming up with lots of good examples (e.g., If my blood counts go up, then we get to go home before the weekend. If my blood counts don't go up...)

Back in the Hospital :(

Well, as you can see, our lives are definitely up and down from day to day - the past few days were up; right now, we're down.

I'm writing this from Hopkins, where Matthew was admitted yesterday for fever. This was not an unexpected development, as we knew his white count was very low from chemo the previous week and he was at high risk for infection. Still, it's always a drag to end up here - particularly when he had really hoped to be back at school this week. At least this time around, we've got a private room on the teen floor. There's a teen lounge with a pool table and various electronic diversions, so when Matthew gets a bit more energy, he'll have something to do. I also brought his guitar, but his throat is too sore to sing. Overall, though, he's feeling ok.

Jon's home taking care of Danny. We are grateful to our wonderful friends and neighbors for stepping in at a moment's notice to make sure Danny is cared for (not to mention Maggie & Jovite). We will be in the hospital until Matthew's temperature and white count return to normal. I'll keep you posted...

Quick Update

Just a quick note to say Matthew's doing fine. We enjoyed an active, fun-filled weekend that included watching Danny's soccer team play their first game of the season (with coach Jon and assistant coach Matthew standing on the sidelines), canoeing/kayaking on the canal, and lots of music (Silver Spring Jazz Festival and Takoma Park Folk Festival).

This is the week where Matthew's blood counts are low, so we're keeping a close eye on him. Jon took him to Hopkins today to have his blood checked and he needs to return on Thursday, but hopefully Matthew can attend partial school for the remainder of the week.

Home from the Hospital

Got home this afternoon after another three-day round of inpatient chemo. Happily this one was easy and quick. Easy roommates. Easy chemo. Matthew handled everything like a pro. He brought his guitar along and had several "gigs" (as he put it). Late into the night on Tuesday, he played for various visitors and the nighttime cleaning crew. During the day on Wednesday, he set up in the kitchen and played for the nurses and doctors on their rounds. Later in the day, he held a mini-concert by request in the children's playroom. Only problem was that the under-5 set didn't quite share Matthew's musical horizons. When asked what "artists" they listen to, the kids looked at him blankly. Finally, Matthew sang & played the Barney theme - something they recognized - and the kids all applauded.

Matthew seems to have no problem resuming normal life once he gets home. He walked in the door, played guitar for a while, then headed to a friend's house. As for me, I'm always disoriented after spending extended time in the hospital and it takes me a while to "re-enter." The hardest part isn't the lack of material comfort (sleeping in a chair, lack of space, not having a private bathroom), it's the loss of control and the endless waiting - waiting for a bed to open up so you can move into a room, waiting for the chemo to be sent up from the pharmacy, waiting for the doctors to write up the discharge orders, waiting for the nurses to disconnect the IV so we can go home. Everything takes three times longer than you expect - and the stress of sitting & doing nothing but waiting is exhausting.

Since Our Last Update

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.)

Welcome to Our New Blog Site

Dear Family & Friends:

We're trying out this blog as an experiment - in the hope that it will help us stay better connected with all of you. Our email distribution list has grown to the point where it has become a little unwieldy. (The server thinks we're sending out spam!) Moreover, there have been times when I've wanted to let you know what's going on, but didn't have the energy to compose a major email message. Hopefully this format will allow us to post a running update of how Matthew and the rest of the family are doing - and allow you to check in with us periodically at your convenience.