EUA #12

Yesterday Gracie and James headed off to Houston for her routine EUA. For the first time ever I stayed home as we had 3 sick kids here that needed their mom too. This trip was a little exciting though because we were told to be there at 1130 for a 1:30 OR time. I received a phone call at 11am asking if Grace was coming. When I said yes the lady on the phone asked what time we'd been told to arrive. Apparently she was really supposed to be there at 1030 for a 1230 OR time. James had left a little late (even for the 1130 arrival time) so now we were really running behind. You can only speed up a 3 hour drive so much. The staff all know us well though so they were all quite understanding of the miscommunication. We've been going there for almost a year now and we've never been late before. Wouldn't you know it that this was the day that they were actually ahead of schedule (the last two EUA's they've been over 3 hours behind schedule). By the time James and Gracie arrived people were working like crazy to get them in as soon as possible. How nice not to have to wait! But hopefully it won't happen like that again.

The EUA went well. No new growth. Dr. G still wants to keep lasering the one tumor every 4 weeks as he's not yet 100% convinced that it's completely dead. We totally support him in that decision as we certainly don't want the tumor to start growing again and be set back several months in treatment. After the EUA Gracie had a surgeon come in and remove her port. So now she's port free!! We're glad she was able to have it when she needed it, but now that she's done with chemo let's get that thing out of there. The fewer foreign objects one has in their body the better. Now if she has a fever she's just like every other child, with the port in a fever required a trip to the ER. We've been very blessed that she's only had one fever in the 11 months that she's had the port.

We consider ourselves so fortunate that Gracie's left eye has such a good prognosis and that her vision is still excellent in that eye. So many bilateral RB kids end up with either both eyes removed or the remaining eye has such limited vision after treatment that they're legally blind any way. How blessed we are that there was such disparity in Gracie's left and right eye. We are quite certain that although Gracie will only have monocular vision that the acuity she has will always be good, even though the field of vision is somewhat limited. The Lord really has been taking such good care of us, not only through the past year, but through our entire lives. Life couldn't be better.

Stephanie