Back again...but some great news followed...

We were home for 6 days before needing to return to the hospital on Tuesday, July 15th. Maggie developed very painful mouth sores, a common side effect of the chemo. They treated her with Morphine and managed to get her to the point where they felt comfortable sending her home. Whereas she had been in excruciating pain, she healed quickly in the hospital and was ready to be sent home in the evening of Friday the 19th. She was scheduled to have another spinal tap that morning for some intrathecal chemo (chemo that is inserted into the spinal fluid) and one dose of chemo through her IV. While there, we were given news that genetic testing results were finally back--the bloodwork had been submitted during our first few days in the hospital. In infants with ALL, 80% have a gene rearrangement (they call it MLL+) that makes the disease relapse much more frequently, both in the short term (throughout treatment) and long term (several years beyond the time of diagnosis). Maggie, however, is one of the lucky ones who does not have the gene rearrangement (and is considered MLL-). This, though not a guarantee of her healing, gives a large boost to her overall prognosis. We were very grateful for this news and complete's our doctor's 3 prognostic indicators. They include age at diagnosis (either younger or older than 6 months) which is in Maggie's favor (she is 9 months old). Also, her white count at diagnosis was under 50,000--some have an initial count of several hundred thousand. Finally, the genetic test is in her favor. All good signs. Our doctor was quick to keep us from getting too excited--he was "encouraged" by the results, but is very aware that we are but 3 weeks into treatment and have a long, long road ahead. Nevertheless, MLL- is much better than the alternative.

We went home on Friday evening and had a decent night. On Saturday, Maggie gradually became a little bit fussy, then started to moan and whine quite a bit, and by nighttime, she was visibly uncomfortable. A quick call to our doctor at 9 pm suggested that we should give her an increased dose of Tylenol with Codeine, and that she was likely affected from the chemo from the previous day. The medicine brought Maggie 90 minutes of sleep before waking and crying until the next dose was due. Again, another 90 minutes of sleep before she again awoke in pain. By 8 AM, Maggie's jaw hung open, drool dripped to her shirt, and she was visibly in significant pain. We were admitted to the hospital by 10:00 AM, again with mouth sores, this time they were primarily in her thoat. Once again, Maggie is receiving a steady drip of morphine, and though she was still miserable most of yesterday (Sunday), she is slowly improving today.

We are scheduled to have a hospital stay this Friday through Tuesday or so for a heavy round of chemo, and now we'll wait to see if we can go home for a day or so before returning. We were told today that we'll likely stay all week and through the chemo treatment over the weekend. While we wait, we'll pray that Maggie's sores get better, that she can reduce and remove her pain medications, and that Maggie continues to be infection/illness-free. Also, that she'd feel more and more comfortable and able to eat her normal amount of food. Finally, that Maggie doesn't have to experience the amount of pain that she's had twice this week.

Thank you for your continued prayers. We are humbled by your support.

Andy