Round 5 has started... Yesterday was a very long day in clinic and one that I know we are all glad that is over! We had a couple of issues yesterday one of which was getting Emily the Zometa that Dr Sholler recommended! VCUs pharmacy has never given Zometa to children and we didn't have it written in a protocol! Zometa is actual in a few clinical trials for neuroblastoma (Bisphosphonates) that is to help with metastasis in the bones like Emily has! They were doing research trying to locate where Dr Sholler got the amount that she asked Emily get! Finally the pharmacy approved her getting the Zometa but they were going to give her less than the amount than Sholler recommended, and we wanted her to get what was required! Then Dr Gowda was able to pull up some references for the 4mg/m^2 dose and they approved the 2.4mg! However prior to getting that she also had to have antacids to help the stomach since Zometa can upset the stomach, the other issue was Emily's specific gravity on the first day has to be =1.010 to start the chemo since she is getting cyclophosphamide (one of the chemo she is getting). It took her giving her urine 3 times to meet the amount and she finally met the specific gravity about 1pm so then she had to wait for the zofran! The pharmacy was one of our biggests issues yesterday!
Yesterday was also a bit of a hard day seeing one of Emily's friends completing treatment for neuroblastoma and having the broviac Hickman line removed! We are so proud of her and their family for being done and getting through such a hard journey, but they made it! But Emily should be done with treatment also now and just knowing she is not there and how much longer she may have makes it really hard! Emily fights this journey with all of her might and we too fight with her! She too asked often lately when will I be done with treatment? A question dad and I have a hard time knowing what the answer is...we just continue to have hope that what we are doing is the right thing! Emily daddy and I will continue to hold your hand and walk along with you during your fight of this journey!
Emily will be starting kindergarten in september and she is so excited about going and being with other kids and just having a somewhat of a normalcy to her! Daddy talked with her about school and her having hair and gave her a choice about hair and if she wanted to have hair! She told daddy she wanted to have hair so we told her we would figure out what we needed to do to get her hair for school! I was reading Emily griffins update and her mom was talking about getting a wig through VCU which I had no idea, so I inquired! The child life specialist Katie brought a form that needed to be filled out, "Application for Hair Replacement". Claire brought a box over yesterday that had a wig that they make and show the real hair that you can brush and color samples for hair, we were able to pick out a color that was the closest to her normal hair color and it is being ordered! The hair is real hair that can be washed, cut and styled so it will be nice for Emily to have and feel comfortable about going to school with! Thank you so much to this amazing organization "children with hairloss" a non profit organization.
Day 2 of round 5 went off with no problems today! Thankfully it was a short visit!! 3 days left of this round and we continue to hope she has no issues! Counts were checked Monday and they will be checked again on Friday to make sure she is good for the weekend!
We are looking forward to the weekend, Emily's bestest friends Sue and Jojo will be coming in Friday and staying at Hotel Hubbel to visit! We can't wait to see you guys!
We will continue to keep you updated on how Emily is doing! Emily has been asleep tonight since about 730pm tonight, not sure if she is having side effects from the chemo or the Zometa, but hopefully tomorrow she won't be as tired!
Emily, I love how your new wig will look! Continuing to pray for you. Keep fighting, you are a very strong brave girl.ReplyDelete
I would love to be able to give you hair if for a wig if you need it. I have been looking to donate mine if I found the right person -> just email me if you are interested.ReplyDelete