Today was a waiting day. We were waiting for a phone call that told us Gracie's port-a-cath insertion would be at 7:45AM tomorrow. We are waiting for information on Monday's EUAs for the other kids, waiting to find out that the hearing test can be performed tomorrow with the port-a-cath insertion, waiting to find out if chemotherapy might start on Tuesday (right after the kidney function tests) next week and just waiting for chemotherapy to start so that we can start battling the cancer.
So it was great news that the hearing test can be performed tomorrow along with the port-a-cath insertion and we are excited that chemotherapy may get an early start next week, so that Gracie and her mom can return home on Thursday night or Friday morning. That would be especially exciting for me!
We continue to feel tremendous support from people from all over. Today we found out that members from our local LDS (Church of Jesus Christ of Latter-Day Saints) ward planned to fast and pray specifically for Gracie's well-being this coming Sunday. I am grateful for the love and faith that this shows. I am also confident that God does hear each humble prayer and that Gracie can only be helped by such a fast.
I offer a brief explanation of a fast as I know many readers may have different definitions for a fast or be unaware of the practice. In this context fasting is going without food or water for a period of approximately 24 hours. This usually entails not eating or drinking from after supper on Saturday until supper on Sunday. An essential part of the fast is prayer. Prayers are given throughout the fast and help one focus on the specific purposes of their fast. In LDS congregational fasts are held once a month, usually on the first Sunday of the month (individuals are free to fast at any time but one day a month is designated as a time for the entire congregation to fast together). However, each individual member is free to select the purpose of their fast. Oftimes one fasts for help with life decisions, health of family member, safety or recovery of other individuals, etc. Additionally the cost of the meals missed during the fast are donated as fast offerings to help provide life's necessities to those less-fortunate. Sometimes a congregation will be invited to unite in fasting for a common purpose and such an invitation was extended to fast for Gracie in her battle with retinoblastoma.
We are again grateful for the support of so many individuals and the love they have shown. We have heard from many of their prayers and fasting on Gracie's behalf and are confident that Gracie will be blessed through your continued show of faith and love.
Subscribe to:
Post Comments (Atom)
2 comments:
my daughter has unilateral rb--i have a google search for rb--so I got your blog--
god bless you guys--I think you are either at chla (los angeles) or childrens philadelphia both are retinoblastoma centers and are very experienced--
sure you know about genetic testing (retinoblastoma solutions in canada)
test the blood of all siblings and you--bet this is sporadic--which would mean no eua's for the other kids-
many prayers-
rb mom in california
Thank you so much for your comment. We actually are going to Houston to Texas Children's for Gracie's care and we will be doing genetic testing on the whole family there. Because her rb is bilateral it is always hereditary and it means that every cell in her body carries the germline mutation. This means that she is highly prone to other cancers in the future and that all of her children have a 45% chance of having this same germline mutation. But you're right in that there is a 75% chance that her dad and I are not carriers and she is the first in our family with this mutation and as such our other children aren't at much of a higher risk than the general population of having this same problem. I'm sure you've read all about this and so know all of this already. I'm more replying to this to clarify for all of the other readers of our blog. Hopefully we'll only need to do this one EUA on our other kids just as a routine screening that I'd recommend any one do after this experience. Yes it's rare cancer, but unfortunately sometimes you're the 1 in 30 000, as you and I have both found out already. I hope all is going well for your daughter as well. 350 cases a year is 350 too many. Often people say that this experience will make me stronger, and I know that's true, but really I was just fine with being weak.
Stephanie
Post a Comment