Since this horrible nightmare began, it always seems like we have been kept on hold every weekend. I have never been so anxious for a Monday morning as I have the past few weeks.
Today, we got a lot accomplished! We ( I should say my angel, Donna ) got a hold of the main coordinator for St. Judes, Tabatha. Donna couldn't wait to call us and fill us in on all of the positive information she learned about this AMAZING facility. She explained to Tabatha that she is an RN and is advocating for our family. (Best friend for over 30 years she will soon find out.) She said that Tabatha was SO kind. She pointed out a TON of positive things about Kayla and her case. One being that she was "over the moon" that Dr. Gupta had removed the entire tumor. This is huge in her prognosis. Also, another plus is that as far as the treatment will go, Kayla won't be starting Chemo until spring so the cold and flu season will be over. That is great news as well. Tabatha told Donna that we can start packing. That we have "verbal" confirmation that St. Judes will be accepting Kayla into their amazing treatment program.
Here are the details that we know so far. (This is all subject to change as you all know) Towards the end of next week, we can plan on us (Denny, Donna, Kayla and I) flying out to Memphis, TN. to begin our first steps. Here is the email from Tabatha describing what to expect:
The first week here will be used to do her pre-therapy workup which includes MRI Brain and Spine, NM Bone scan, Lumbar Puncture, labwork, radiation therapy planning and simulation, audiology exam along with consults with all of our auxiliary departments. She will have consultations with nutrition, anesthesia, physical and occupational therapy, speech therapy , child life, etc. Our goal is to make sure on the front end that we know what she needs to fully recover from surgery and to be her best. We know that you can not just treat a brain tumor, you have the treat the whole child and the family.
The first part of therapy is Radiation Therapy which is 6 weeks (Monday through Friday) and it is given outpatient. If she needs any therapy post surgery then we will set that up during this time. We also have the option of providing school assistance for her while she is here through our school program. They will work with the local school system to set up her curriculum here to keep her on task while she is here. I will set up a consultation with our school program coordinator for the family to discuss the option and decide if they want to pursue that. Once Radiation is complete, we will repeat her imaging prior to her going home for an approx. 3 week break. When she returns, she will be here for the 4 months of chemotherapy with stem cell transplant. I can discuss this process over the phone with the family if they would like more details on how this works. Once therapy is complete, she will have end of treatment imaging then she will come back every 3 months for follow up which is usually a 3 day stay.
Housing is up to a total of four people including Kayla. We leave it up to the family to decide who the other three people are and they can swap out if they need to during her treatment. We will also provide meal tickets for Kayla and one parent for the duration of their stay vs. a Kroger card to purchase grocery items if they would like to cook at the Housing facilities vs. eating here. We will cover the flights for Kayla and one parent for round trip flights for each visit here. Patient services will go into more detail about these things when they arrive.
Tabitha told Donna that she sees so many families call in interested only to find this all, and I quote, "so inconvenient". REALLY??? None of this has been convenient! What parent wouldn't travel the earth in search of what might give their child the best chance at survival? There isn't anything we wouldn't do. Yes, it will be hard. Yes, it will be inconvenient. Yes, we will pretty much lose our incomes. Yes, we will FIGHT and figure it all out. That little girl is worth whatever it takes.
So, that was just my morning! I told you it was a productive day. Later in the afternoon, we took a drive down to Terra Linda Pediatrics to see some of our most favorite people in the world! We needed to have Kayla's sutures removed from where her drain was stitched in at the top of her head. She was a trooper. I think she is taking the pain well considering. She is at her tiny wits end. It's a good thing she is finished w/ surgery as we know it. We had a nice photo-op with Dr. Yamaguchi and Sunny! God we love them! This office has become like family to us. I have to say, that one of the most amazing things about Dr. Yamaguchi is that he has never once doubted my mothers intuition. If it weren't for him listening to me and trusting me, we might have had a very different outcome here. I keep reading and hearing the sad stories of doctors ignoring the symptoms and chalking it up to different things. He expedited every single appointment. We wept in his arms the day we found out. We know that soon we will be back for "normal" check ups. We love you guys!
How is Anthony? well, he is doing great! We are so lucky to have such a wonderful team of teachers, friends and families all keeping things normal for him. Here is one of the reasons I LOVE Karen Beckmann - one of Anthony's amazing teachers (another angel):
The agenda for tomorrow:
We have a big appointment at 9am back at UCSF to get the entire pathology report. We only have 95% of it. It won't change the treatment or the diagnosis. We need a complete copy to send to St. Judes along w/ all her records and MRI discs. So, it's off to bed for me in a few.
Good Night. BIG HUGS!!!