two little zoe updates.

And we're off!

Posted 1 hour ago

Yesterday started at 4:30 a.m. when we awoke in preparation for our trip to Little Rock. We had spent the weekend in Camden visiting with family. At 8:00 a.m., we met with the oncologist. I have to correct a previous post. This is not "salvage" treatment but Stage IV treatment in a Stage 3 case. He says that Stage 3 is quite rare as neuroblastoma more often presents at Stage IV...a silent monster!! She had the port accessed mid-morning. Zoe had been most apprehensive about that. She did great!! She did have heavy breathing until she realized they had already accessed and she said,"that's it?!?!" From there we went to audiology to have a baseline hearing test. One of the chemo agents used in treatments 3 and 5 can be toxic to the ear leading to the need for hearing aids. Daddy had to go set up the camper mid-day and Zoe and I tucked away at the gift shop for a quick refreshment. We then were officially admitted. Before the nurses had full orders, she was IV pole free and we took advantage of the beautiful day. She took a walk outside with Mary, she played hide-and-seek with me, she played "soccer" with a basketball... Around 6:00 p.m., she was hooked up to the cyclophosphamide followed by topotecan. This infused over an hour and she did great. She slept well through the night and remains asleep at this point. She will be on continuous Zofran(a medicine for nausea/vomitting) and IV fluids today(cyclophosphamide offends the bladder) and therefore accompanied by the IV pole at all times. I have to admit that she has mastered walking with the pole and toting the multiple tubes from her chest. Not much going to slow her down. I am trying to prepare her for those days that will be "crummy" but we try to focus more on feeling good now and having "crazy girl time."

So, we were told yesterday that the stem cells will likely be harvested within the next few weeks. Our insurance called shortly thereafter and said they would not cover this procedure at ACH and we would have to go to St. Jude. As you may know, we are huge advocates for St. Jude as we have dear friends who have been through this very experience there. However, we have developed relationships here and would like to stay. The case manager is working on a waiver and the procedure may be postponed to between later treatments. The delay will not affect her outcome and therefore we are pushing for the waiver. Between treatments 5 and 6 she will be reevaluated for surgery. After chemotherapy she will have the stem cell transplant with 2-4 weeks of isolation. This will be followed by 6 months of Accutane.

One day of treatment is behind us with many more ahead. Please continue to pray with us for healing and cure for Miss Zoe.

Be well.

Erin

and the second, most recent post.

Twedt Catering :)

Posted 17 minutes ago

Our dear friends, more like family, Mary Cantrell and Bev Twedt have offerred to coordinate meals. We have so very many people asking what they can do to help us. Mary thought that providing meals would be a great way to provide. She and Bev have planned to cover dinner this week. Anyone who would like to bring a meal can call or email either Mary or Bev and they will put you on the schedule. If all goes as well as possible, we will be in Little Rock the weeks of April 6, April 27, May 18, June 8, and June 29. We will also have times in between for stem cell, surgery, and fever.

I should let you know that we have beef and shrimp allergies(unfortunately just me.) I have had these long enough though that if your specialty is beef or shrimp I can make do. :)Ben and Zoe both love them!

Thank you all for everything!!!!!

if any of you want to take food to them, let me know. i actually deleted the emails and phone numbers erin left. i don't want to post that stuff without their permission. however, if you are interested, email me, and i'll send you the phone numbers/emails.

love to all of you. prayers for miss zoe. and all the little ones out there battling illnesses.