08/14/01

Dear everyone,

Yesterday we jumped with both feet into the post-transplant complication world that Travis had so miraculously escaped -- until now. Starting with the end first, it turns out that Travis has full-blown cataracts in both eyes. This, believe it or not, is good news (I guess), as we spent the entire day yesterday up in Wisconsin ruling out a brain tumor as the reason for Travis' sudden and strange symptoms this weekend. Travis has been doing SO well until now -- strong, growing, happy, fully active in sports, swimming, day camp and Spencer life. And then…

During a happy-go-lucky weekend day Saturday (Yikes -- I remember that feeling on the day before he was originally diagnosed in May '98), Travis suddenly stopped, pulled his glasses off, and complained that his eyes suddenly fogged up. This lasted about 45 seconds and then was gone. And it happened 5 times that day, on and off, with blurred vision in between -- and again multiple times the next day. I was convinced that it was indeed cataracts, as we'd been starting to monitor that (slowly developing) after his last checkup-- a post-cancer, post-BMT complication, likely due to radiation and mega-steroids (prednisone). But between the sudden onset of the foggy vision and the intervals continuing the next day -- and after we'd put this together with several major headaches (the kind that one day even caused Travis to miss out on a fun summer camp day) over the last few months -- we were told to bring him up right away to be checked. Later in the day, I suddenly realized that the medical staff was wanting to check that it wasn't a brain tumor.

I can't begin to tell you what emotions this all stirred in me on the drive to Milwaukee -- and during the wait at each appointment throughout the day. Even though the only thing that matters is what's REAL, the thoughts, fears and "what ifs" kept creeping in, despite all my attempts to focus on "what is". As I told a friend today, it felt like a war veteran hearing a gunshot and immediately being sucked back into the war in his mind. Believe me, this was my "gunshot". I was back in our war. And it was a SCARY place.

At the first appointment, the eye specialist handed me the scope after viewing -- to see Travis' cataracts myself. Big "stars" covering his entire lens area. Right away, he indicated that this would definitely cause the foggy and blurry vision -- and Travis' inability to read close up (he told us this on Thursday!). But didn't necessarily explain the severe and prolonged headaches.

Since we weren't sure about those, Dr. Casper ordered at CT scan -- again MAJOR memories…

Travis handled this all SO well -- and Spencer, too. Spencer had insisted on coming as Travis' support and distraction. The CT showed a small spot on Travis' brain -- likely NOT a tumor, they've assured us, but rather, a small cyst of some sort. Hmmm… And to get a better look, then he had an MRI. Yikes -- I hadn't realized this was a 45 minute test, but Travis was just unbelievable -- even starting it at 7:15 pm. And of course, the contraption allowing him to watch a movie during the procedure (with headphones) was brilliant. While we don't know for sure what the cyst is, they've repeated it doesn't look like a tumor -- and may be unrelated to the eye/headache problems. Likely an old cyst that's been there. Likely, they'll be having Travis see a neurologist to finalize all their thoughts on this. I'm hoping his headaches are no more than summer dehydration at the same time as the eye issues. It seems the BIG scare is passed, though. THANK God.

What a draining day. In between appointments, we were, however, able to scoot quickly to the Ronald McDonald House across the street from Children's Hospital of Wisconsin for some escape time. The boys and I just melted into the new "Secret Garden", just completed. It was just what we needed. Love and care from Pam, the executive director that’s known us now for over 3 years -- and the magic of a huge, restful and playful garden. Thank you for the sanctuary and respite, our RMH "family".

As we drove home 14 hours after starting out for MKE, Travis whispered to Spencer and me, "Isn't it amazing how some things can bring back some beautiful memories?" When I asked him what he meant, he replied, "Well, being at the hospital and playing with beanies at the Ronald brings back some beautiful memories". GO FIGURE. After eye drops, bright lights directly into his retina and all over his eyes, CT scan, jackhammer MRI noise and even a needle "poke" for contrast fluid during the MRI (with no EMLA numbing cream -- even though we'd had it in his both arms already twice earlier during day, just in case!) and the nervousness we all felt -- all he remembered was the beauty on the way home!

What a tribute to all of you at Children's Hospital of Wisconsin and the Ronald McDonald House -- Jill, Dr. Casper, Lynette, Urna, Heather, Jody, Donna, Dr. Margolis, Pam (RMH) and everyone. The true caring and safety and love that you provide -- along with your healing medicine and "magic" DOES make a difference. Thank you SO much for the gift of profound security that came out so innocently and authentically from Travis -- right before he conked out, exhausted for the entire drive home.

So, from here, we await the neurology appointment. I'm hoping for the all clear -- "much ado about nothing" report, as it seems to be so far. And also -- we're scheduling for cataract surgery as soon as possible, so Travis won't be vision impaired in school. Right now, the consultation is scheduled for the day before school starts -- the earliest we can get in. I'll update you as we go through this -- and am reassured it's outpatient and common. Still -- it's my 8-year old son -- and it's his eyes we're talking about. He's nervous, but not paralyzed with fear. And I just want to get it over with so we don't get overly worried during the wait..

Again, thanks for your love and support, everyone. I'd JUST written that all was great, in a fund-raising letter about to be sent out for my Leukemia Society TNT marathon training. I'll still send it out "as it", as I do feel we're so blessed with Travis' progress, compared to what "could be". This was quite the reminder that we never know what awaits us each day during this journey.

With love and hope and gratitude,

Melanie