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Dear everyone,
Life has been on the upswing these last few weeks since Travis' last hospitalization. He has finished taking the medicine for C-Diff, and all the pain and discomfort symptoms seem to have disappeared. We are still in awe of that turnaround -- and so grateful. Yesterday we were back at the clinic in Milwaukee, and I had tears in my eyes as both Travis and Spencer were running full speed down the long hallway toward the clinic, laughing all the way. I didn't have the heart to clamp down and tell them to mellow out. It's such a moment to celebrate. I keep wanting to tell everyone who looks sideways at me for these disciplinary lapses -- "look at this boy!!! This is what 7+ months after a bone marrow transplant looks like!!!". It's so hard to keep this in. We do often tell people -- waitpeople at restaurants, for example. We so want to raise awareness of BMT and the importance of registering to match marrow. Anyway, this is all so amazing to both Joe and me, as we near the one year mark since Travis' diagnosis with ALL PH+ on May 6, 1998. What a HUGE year this has been. Huge sadness, huge pain, huge questions, huge beauty, huge learnings, huge meaning.
The eyes report is mostly good. The CMV Retinitis seems to be gone and Travis is still on the IV Foscarnet to keep the CMV inactive. We're feeling hugely relieved about that. Today we did get a call from Travis' retina doctor though, that they seem to have found out why his eyesight keeps fluctuating from checkup to checkup (between 20/50-20/80 in one eye, for example). Apparently, the latest retinal pictures (Travis has to endure these every 2 weeks -- not too fun) showed swelling around his optic nerve. He has what is called Cystic Macular Edema. Supposedly not too worrisome, as it's not too uncommon (though not many stats on this happening with ALL/BMT patients) and will hopefully clear up on it's own. It is essentially swelling around the center of his retina, possibly an indication that Travis' immune system is getting stronger, and was trying to attack the CMV. (I THINK this is what this all is about.) They have decided to treat this with eyedrops in each eye -- 4 times a day (bummer!!!) and will continue to check his retinas every 2 weeks.
Other than that, we seem to have become the "poster family" for post-BMT counseling. I'm actually feeling quite proud of us for taking this step, and for sharing the fact that we're doing it. Not ashamed to need a "tour guide" through our feelings. So far, it has been tremendously helpful, though gauging by our range of emotions and exhaustion, I think we have a ways to go. Today I take Spencer for his first solo appointment. Will see how that goes. When he originally met our wonderful counselor, he warmed up after awhile, and when she asked if he'd like to come back, Spencer replied so innocently, "Do you WANT me to?". She said, "Yes, I sure do, if you'd like to." And he replied, "Then I'd like to." And that was that. We'll see if he's still keen on the idea. I do think there's so much in his intelligent little head that needs to be worked out.
In the meantime, we had the most beautiful conference with Spencer's preschool teacher. She waxed poetic about how special Spencer is -- how bright and how helpful and fun. She told of how he is often talking about his love for Travis, and explaining to the kids about leukemia and Travis' bone marrow transplant. His teacher was expecting to see Spencer "acting out" from all this experience, but on the contrary, at school, he's been doing really well. (Joe and I figure he's been saving his meltdowns for at home!). We were SO proud during this conference and both Joe and I were very misty at the teacher's loving report. It was so beautiful.
About the counseling, Joe and I are appreciating the guidance as well, and Travis will likely be starting his alone counseling once we get things with Spencer organized. It is quite the scheduling challenge, as you can imagine. So far, I highly recommend it.
The boys are as close as ever -- in fact my heart goes in my throat when I see them doing things like concocting their Yon Boys Secret Handshake -- a series of butt bumps, hand slaps and shakes, and ending in a hug (Oops, not so secret anymore!). I truly believe Travis' recovery is as linked to the boys' closeness as it is to the meds he receives. The love they have for each other is incredible.
Other than that, I had quite the weekend this past few days. Four of my close buddies (from my hometown and here) and I went away for a "chicks weekend". I experienced every range of emotion -- laughing hysterically at my crazy friends to pouring tears on a walk with my wonderful friend, Stephanie. All in all, it was SO good to have the break. (And Joe said he appreciated the time alone with the boys, and having control over the schedule, etc, even though it was exhausting). I am so lucky to have the most incredible friends -- it is something I will never take for granted. And for all of you, too, thank you so much for continuing to show your love and support through our journey. We so appreciate it. We're (all four) doing so much better.
Hopefully we will become very boring from here on in.
Love,
Melanie, Joe, Travis and Spencer