Sunday was her actual birthday and we drove down to Ft. worth to be there for scans on Monday.
Monday was the bone scan which took 20 minutes. they wanted to put her to sleep for it because they didnt think she could hold still. I told them she would and has done it many many times. WThey were surprised and so impressed with her. They said "shes amazing" also because she did so well with her port access. they had 4 people around her trying to hold her down and she started crying. I told them she will hold still without them touching her and she did. they could hardly believe it because almost all the kids struggle and scream. NOt that i blame any other kid for doing so!!! I would totally fight too. :) She is just amazing that way, and many others.
The bone scan results were NORMAL! :)
Tuesday she went to the clinic for them to draw some blood. She had some IV fluids because she had been puking the previous nights. all of the blood tests were NORMAL! :) after the fluids she didnt puke anymore.
Wednesday she had an Echocardiogram, EKG and hearing test. She held so still for these as well. I never heard the results from the heart test. The hearing test was normal with her left ear a bit worse than the right. also moderate hearing loss with high frequency hearing. They said if she was at school they would test her for the normal test and she would pass. they dont test the high frequency at school. They said high frequency is not in a lot of regular speech. they will monitor her hearing as things go along but she doesnt need any hearing aids or anything at this point.
Thursday she Had the CT scan and MIBG scan. the CT was about 10 minutes and the MIBG was 60 minutes. she fell asleep during that one but held still the entire time. Both of these scans showed NO EVIDENCE OF DISEASE! the chemo and surgery did their job! we are very happy.:)
The one thing the cT did show was that her left kidney has little if any function,.because of the tumor being attached to the kidney and all the pulling and tugging the surgeon had to do to get the tumor off. There was also some free fluid in the abdomen.They said function probably wont return to the left but it is possible. it will probably just shrivel up. They didnt feel like she needs surgery to take it out since her blood pressure is good and her renal panel was good.
Thursday she also had bone marrow aspirates and biobsies on her lower back. She was of course put to sleep for that. we dont have the results for that but they anticiapate no surprises there either. :)
Sfter she woke up her blood sugar was 55 from not eating for 24 hours. so she had some juice and a popcicle and they let us go.
Friday we went back to the clinic where we got all the news from the scans. The original plan was to start stem cell transplant next week. Her Dr. said she looks great on paper and everything on paper says to go ahead with it but looking at her she is pretty medically fragile and the doc felt like we might run into big problems since transplant is so incredible intense and hard. The new plan is to do a couple rounds of a low dose outpatient chemotherapy. 2 weeks on 1 week off, twice. This will put her transplant to mid to late september.
We are doing the first week down in fort worth so we can see the Dr. everyday and get a daily weight. We are being very aggressive with her nutrition in hopes we will fatten her up before transplant to give her a better chance. She is on a new formula that is easier to digest so hopefully we can increase her feeds a lot. The low dose chemo usually doesnt cause nausea so they say a lot of the kids will really do well on it. This is our hope for Gracie that she can gain 5 pounds in 6 weeks. :)
Thank you for your continued prayers and please pray for her to not be sick and be able to gain the weight and be happy and playful.