I am not giving up. I refuse to. I am still grasping at straws almost, but I won’t stop. Every call is long, and drawn out. It’s like they “don’t” want to help, or it’s probably more of they can’t help and are just as helpless with this diagnosis as we are. I state my purpose, they say sorry, and do their best to get me to the people that can maybe offer me more assistance. After calls, forms, constant pushing and a group effort, sometimes we get somewhere. Sometimes… Just frustrated.
So it’s a normal day here, we reach out and fight, and call all over. I thought everyone would like a glimpse into our reality. Keep in mind, we do this EVERYDAY, and this is today:
High Times – wrote Katherine’s story for their page. They responded so quickly and said they would post it soon. I was shocked.
MD Anderson – Mail in review. They have some state of the art therapies here for pediatric brain cancer. Not sure if any will work for DIPG, but it’s worth a shot. We have to promise to pay cash for this review, should our insurance not cover it. I questions them on that, can we wait for coverage, and they have not responded. Seems not so legit. I’ll keep trying.
The Talbert Family Foundation – applying for financial support, but will have to shut down our GoFundMe for tax purposes. Not sure I can do this, we will discuss further.
Memorial Care – Hyperthermia Therapy, for adults only, left a message with a nurse coordinator, just to see if she knows more. She responded twice, once to follow up, and once to say she was sorry, they have nothing for us. I will call her to thank her for her efforts later.
First Hand Foundation – For assistance with homeopathy and supplemental medicine support, pending their response.
The Let It Be Foundation – Financial assistance, they want to come and give us a welcome packet, scheduled that.
Dr. Monje – forms for tumor donation sent, finally, after trying to hold onto those in consternation.
Dr. Wagner Homeopathy Therapy – assistance to make Katie comfortable as this progresses, although he uses a method I am not sure I am comfortable with. I was honest, about our beliefs and how we want Katie to be comfortable, and it’s all up to her, we do not force her to do anything she doesn’t want to. Waiting for a reply.
The WEED – Wellness Earth Energy Dispensary – Cheaper quality pediatric CBD and THC oils, begging for some oils, at a cheaper price, but as quality as what we get now.
Mayo Clinic Dr. Julie Hammack – Mail In review request, they don’t normally do this, but may make an exception for us.
Done. For today. So to everyone, we promise you that we are not ignoring you, and we do very much appreciate all of the support. We just are so slammed. And mind you, she had two appointments in between this, and both of us helping in between my work, and we are still worn out. ON a crazy appointment day, or one where she has an anxiety attack, this would be so much harder 10 fold. And don’t forget the multitude of appointments that we go to for the older girls, and our efforts to make life normal for them. 3 appointments already this week, and more to go. I’m not complaining, I promise. I am just making a case regarding the need for more help for our families. We deserve more financial, emotional, and process flow support. More then deserve, we need… It’s easy to get lost. #frustrating
Also, we are learning how very lucky we are to be so close to a Children’s Hospital. Hat’s off to you cancer families not near a Children’s Hospital. I am so very sorry…
David’s FMLA was approved for $3,000. That will help us since he hasn’t received a check in three months.
Changed Katie’s Novartis prescription from 10 MG to 15 MG, so we will get 5 MG capsules. Fingers crossed this works to slow the tumor growth.
Katie saw Christine in her appointment today. She sure makes Katie smile. #SnapChat Thank you Christine #LoveForChristine