Hello #KatherineTheBrave followers, friends, and family. We wanted to publicly update everyone in regards to our decision regarding Katherine’s therapy. Some of you know this already, but we feel we owe it to EVERYONE to at least share our final decision. You have supported us, and her, so selflessly. This post may be long, although it’s just another example of all of the decisions that parents of kids with #DIPG face, and are up against. It’s just an endless stream of information to process.
To begin, we have met with countless doctors this week, from all over the world, and our decision was not easy, and took many days of critical thinking, dialogue, contemplation, deciphering data, crying, determination, and so on… No, we have not given up, however we are against anything that will cause Katie any harm, or prolong any suffering to her fragile body. We are constantly performing a balancing act of quality of life vs. extending her time with us, and for her. You see, we get no survival rate, and then we get sent home. You pack up your stuff, as other cancer patients are there fighting, with hope… and you leave. Even after 9 months into this journey, when asking if we should call should she struggle to breathe, have a lower heart rate, or should her symptoms get worse, etc… we get a look, and then we are referred to our Hospice nurse. Over, and over again, in different scenarios. We are told that we are so strong, and to please not believe that we are giving up. Those words resonate, as they are repeated, by so many doctors and nurses. All the while, in our minds, we feel that they are in fact the ones giving up. It hurts. It can take the strongest person alive, and make them weak and fragile. It can take away your hope, your wishes, and punch you in the face with fear, every minute, of every day, so that you are shaking your head and closing your eyes to get the thoughts out of your head. This response, the lack of any options, tells you a little bit about our struggle, and I know other DIPG families can relate to that. SO please bear with me as I move through the items I want to address, and understand where they are coming from.
We are not going to Germany (as of now). We spoke to the German doctor, and we have come to the conclusion that this trip, and this therapy, may be detrimental to Katherine this far along into her DIPG journey. We did not come to this conclusion easily, or alone, or via one set of personal advice from others. This was a long drawn out decision, with many, many people involved. Some against, and many, many for… We are determined to make Katie’s life enjoyable for her, and after some recent events a trip this long, and this far, would not be in her best interest. We respect everyone’s opinion, and hope that this does not preclude you from supporting Katie along her journey. That is a fear of ours, as we were so hopeful that this would be our solution to save our daughter, and we shared that with all of you, although we just don’t feel that it is anymore. We want everyone to understand that we know how much hope, time and effort was put into this vision of a hopeful and anticipated trial in Germany for Katherine, and we will never forget that. Thank you…
We are going to stay the course with her Panobinostat, and we are upping it to 15 mgs. Panobinostat may stop being effective after so long, so we are going to increase it. Panobinostat can cause heart problems, and Katie has not had any (other than a slower heart rate which is expected with DIPG) so we will continue this route.
We will continue CBD. Katherine is not on pain meds, nor is she on steroids. Ask most other DIPG parents, and at this stage, this is unheard of… Our only explanation for this is the CBD/THC dosing that we give her daily. She has no headaches, she has no pain, she sleeps well, and eats decently. She has no fevers, she can walk, and talk. We feel that her daily dose of 1,000 mgs of CBD/THC may have something to do with this. We do not believe that this will save her, however it will definitely make her time here with us much easier on all of us, especially her. We currently pay up to $3,000 a month for this alternative medicine, and this will go up soon as we are hoping to get her to 1,500 mgs in the next month. We estimate $4,500 a month. There are a few kids in LA who are on this dosage and they are stable, and doing well with DIPG.
Re-Radiating it not an option for Katherine. Reradiating is a symptomatic therapy. Katie doesn’t have any life threatening symptoms, yet… If she were to get them, re-radiating may or may not work. There are no promises, other than taking her away from her family, to sit in that machine again, and agonize, again… Our Radiation Oncologist has done this before, for other DIPG patients, however in most cases she has done it out of desperation for the families who wanted it. In ALL cases, it has not worked. All it has done is cause those kids to go through the process all over again, unbearably, and did not give them much more time. We don’t think we can do this to Katie. As hard as it was to say no, we just don’t think a few more weeks is worth her suffering.
Not Giving Up!:
I am sending out a notice tonight to every doctor that has seen Katie, or has been involved with her since this horrible journey, and we are going to ask them to re-review her scans, and offer up any suggestions, or trails that they feel would benefit her at this point. We are unsure of what we will receive back. We will keep looking, and reaching out to everyone. We will also go meet with any doctors, or specialists if anyone has any suggestions. We are not giving up, we are continuing to reach out, and fight for our daughter. Please do not think otherwise.
All of the fundraising that is coming up, and that has happened has been a tremendous help to our family. We have raised over $17,500 for Katherine’s meds, our bills, and food, etc… David is out of work and has not been approved for FMLA or disability, as of yet. We continue to fight that. I am going on leave here soon as well, to be with Katherine and spend time NOW. I may work part time, part FMLA, to keep some income coming in. With everything we have to pay, meds, trips, supplies, etc… every bit helps, and we cannot thank you all enough. We are so lucky to have each of you fighting with us, and appreciate all of the support.
Well that’s it. Thank you so much for reading. I am sorry for the book. I just needed to get it all out. This is my outlet, and I get to update you all in the process.