Radiation starts tomorrow, with tomorrow being the first day of 12 business days of being there first thing in the morning. Dr. Bagatell had her radiation oncologist from CHOP speak with Dr. Song the radiation oncologist here at VCU and they feel comfortable with what will be radiated and feels that it will be ok for us to remain here at VCU to complete radiation.
Dr. Bagatell is working on a schedule for Antibodies the next part of treatment after radiation. Antibodies will include scans prior to starting and she will schedule those scans as well as a consultation to go over Antibodies and what to expect. As far as what we understand antibodies will be for 6 months, however it will not be consecutive time that we will be at CHOP, so we will be there for treatment and then coming home. Once we have the exact schedule we will be able to update and let everyone know about our traveling that will be coming up. We did remind Dr. Bagatell that the holidays are coming up and we are pretty hopeful that she will work antibodies treatment around the holidays, so Emily can be home with family for the holidays. Last year Emily wasn't home on Christmas Day and last year on December 18th will forever be embedded in our minds and what all she went through.
As for Emily, she is doing pretty well. Her counts have been remaining well and even her platelets have started to go up, which is great. When she first came home her white blood count went up, however as of this past Friday it went back down a bit, but nothing to be concerned about. She gets winded pretty quickly, however she holds her own. She knows when she is tired and she will rest and won't overdo it. If she walks or plays more than usual, her legs will get tired quickly and the majority of the time she will ask for you to carry her, but again she does very well! From the stem cell transplants, she had a quite a bit of discoloration of the skin. We have noticed a lot of it around her neck, her panty lines, knees, however we will told that it will go away in time. Emily is also loosing her finger nails which is from the accumulation of chemo. We can see the lines where the new nail is coming in, however the older nail on some of her fingers have broken off and we have had to keep band-aids on those fingers. We noticed during her 2nd stem cell transplant that her hair was starting to come back in and she had quite a bit of peach fuzz on her head, however since being home she has lost of that, which again was from the accumulation of the chemo. But she is done with the chemo treatment, so her hair should be growing back now, we are excited to see this. However, Emily just takes all of this in stride and she just keeps moving. She always amazes us, with how well she takes this. She rarely cries, and when she does she has just had enough.
So with radiation starting tomorrow her hemoglobin has to stay above 9, and if it falls below 9 she will have to get a transfusion. Friday, I was called early from work to bring her in because if she needed to get a transfusion it takes 3 hours, they didn't want us to bring her in late. Got her there as quickly as we could and they were able to get her blood drawn and her hemoglobin was 8.9, so thankfully she didn't have to get one, however she may have to get one later this week. She will need to have a clinic check once a week.
Thank you everyone again for your continued love, prayers and love, it means more than you can imagine. The past few weeks have been rather stressful on us, however we are charging forward as well as Emily and we will get through this no matter what we have to do to get there.
Quote of the day: "Stop being so busy. Make time to spend with people you love, no matter what. Make it a priority!! Tomorrow may never come and you may regret it!"
I took part of this quote from another Caringbridge page, and added the last part to it.
Also, our friends, Dawn and Gene, are doing a fundraiser for Emily to help with traveling purposes, here is the information I have copied from it:
Only a few more days (at least until Friday, October 21st, if longer I will let you know) to order...PLEASE help us raise money for the Hubbel family. All the sales from this Thirty-One party will benefit the Hubbel family. We are donating 100% of the commission to help with the medical expenses for their 4-year-old daughter Emily Hubbel, www.emilyhubbel.com, who is fighting neuroblastoma cancer. Please be sure to place your order directly through the following link in order for it to go towards this family: by clicking here through this link for thirtyone If you have any questions or need help placing an order, please let Dawn know (Dawn at email@example.com). **It's a great time to start thinking about your holiday shopping** and you will also be helping out a great family!! Please share this with your friends and feel free to repost. THANK YOU VERY MUCH!!!
Praying for Emily! Allison has the discoloration too, on her neck and by her ankles. She also had some good hair growing back that transplant creamed. Will be happy to see it come back in!ReplyDelete