Hello to all,
Its been a good day and its been a rotten day.
Charlotte was off all her IVs today, nothing hooked up anymore. We were visited by quite a few different teams for assessing her and everyone thought she was doing really great. Physiotherapist, speech therapist, occupational therapist. The occupational therapist brought some toys and played for a bit, we had Charlotte sitting up (with assistance) for about an hour playing. She has a great range of motion back in all her limbs, better than the weeks leading up to the surgery. She has a bit of trouble with her right arm and knowing where it is in space; she will make the right motions (grabbing a button) but the location is out by a few inches. Once place her hand on the button then she can find it again with no trouble. Her left eye is still puffed closed so that could be part of the problem. Swelling has gone down lots though, sitting up in our arms most of the day has helped I think. She was quite perky at lunchtime, I had jello and ice-cream out as her options. With one cup on each knee as I was feeing her she clued in and started ordering what she wanted next by pointing to my knee. If I messed up and scooped the wrong thing she refused until I dumped it and re scooped the proper dish. Smart cookie. She was fairly cheery today too, now as I write this she is babbling some cheery nonsense to her dolly in her crib. But she will stand up for how she wants things; she would have none of the heart monitor we tried taping on her toe tonight. Ripped that off several times already, the nurse is gong to try sneaking it on once she is asleep... good luck to her!
We have also spoken to the oncologist today. Although they are really not wanting to put a title on this tumour until the official results come back from pathology they do have a pretty clear picture of what it is. It wasnt good news. This is a fairly aggressive tumour and although it looks like surgery removed everything it could grow back quite rapidly. Because she is so young radiation is out of the question for now. The tenitive "plan" would be to let her heal for two weeks. Do a "spinal tap" for a sample of whats going on in her brain and spinal area as far as tumour cells go. At the same time they will take a bone marrow supply to transplant back into her at a later time after hers has been hit by the chemo. (This will help her heal herself faster.)
Then hit it hard with chemotherapy, 6 sessions of something fairly aggressive and then assess things. If needed more chemotherapy until she is old enough to withstand the radiation treatments. We were told that there is a chance that all we need are the first 6 sessions. So at minimum we could be here for 6 months. They want to keep her here at the Children's Hospital during treatment to keep a very close eye on things. We have a room set up at the Ronald McDonald house, which is wonderful. They are amazingly clean and strict about it so it will be a safe place for a immunosuppressed little girl.
Long range it is much to early to tell... if the first bout of Chemo does the job we would be sent home. Every 3 months we would come back for tests and MRIs for the first couple of years, then it would bump down to every 6 months... and then a to a year. She will likely need these check ups for the rest of her life. But we keep being told that until the test sample results come back none of this is in stone... we are taking this opportunity to pray that this diagnosis can still change. ROb has written on our bulletin board "With God all things are possible-no cancer"
First things first though and she has to heal up from this surgery. They will not start anything until two weeks after her surgery... thats a little more than a week from now. After our big meeting on Tuesday we may be sent home for a few days (like 3 or 4.) It will be a bit crazy Im sure, we will not likely see anyone or have any visitors in attempt to try and keep things as calm as possible. And keep away as many germs as possible.
We really appreciate everyone offers for help and support. At this time we are obviously overloaded with whats going on immediately in front of us here and not thinking at all about whats going on out side of this hospital room. We have asked our sisters Kelly and Cheryl to take on the task of delegating any tasks or chores that might come up. If you would like to offer help please contact one of them. Kelly can be reached at email@example.com and Cheryl can be reached at firstname.lastname@example.org as needs arise we will let them know about what can be done or what we specifically need help with.
And there you have it, our roller coaster of a day.
Please stand with us that we will have a better prognosis once results come in. We were given a beautiful little book called "Hope for each day" I turned to Charlottes birthday, July 21, and read: Thanks be to God, who gives us the victory trough our Lord Jesus Christ. 1 Corinthians 15:57. Pray that Charlotte will have this victory.
With all our love, Rob and Allison