Monthly Archives: December 2015

CDK4-6 Trial

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The appointment yesterday was anything but resolving. More uncertain questions, followed by unclear answers. We are now being told, by yet another doctor, that Avastin may not be the hopeful drug we had hoped it would be. All of our hopes for this drug for the past 6 months have been shattered again. Imagine holding hope that a drug was going to give you more time with your sweet, beautiful, warm, loving, child… and finding out that it may have done nothing at all. According to another doctor, Avastin does work, but doesn’t always work in every patient. “Her tumor is growing, that tells you something. ” he said… Now what do we do? According to Katie’s Oncologist, she has taken a patient off of Avastin and he declined sooner than 2 weeks. His parents didn’t even get two weeks and didn’t make it to trial. How devastating. I’m angry again. I’m trying to not be bitter. And I thought I knew what tough decisions were prior to Katie’s diagnosis. We hold our child’s life our my hands. Daily. Well, we always did, but now it’s on paper. A paper we have to sign in triplicate. Oh, and if she passes, we will have to sign that paper too.

This “hopeful” trial at CHLA is called PBTC-042/CDK4-6/PD-0332991. It would only require that Katie not be off Avastin for 3 weeks. Scary. The other was 6, and you can guess our answer to that one… She would need to be off Panobinostat, for two. Doable. A brief definition: “Tumor cells grow and divide rapidly and uncontrollably. In normal cells, specific proteins and their enzymes called cyclin dependent kinases (CDK4 and 6) tightly control the process of cell division. Another protein called Rb1 also regulates this cell division and stops the cells from dividing. This Rb1 protein suppresses tumor formation in normal cells. But in cancer, the two kinases (CDK4 and 6) are out of control and drive the cell to divide and form cancer. Tumor cells can sometimes transform or inactivate Rb1 to help them divide continuously. In this study, we are testing an experimental drug called PD-00222991 (called Palbociclib) that works by inhibiting the CDK4 and 6 proteins. In animal studies, researchers have found that this drug works only if tumor cells have an intact Rb1 protein. Over 60 percent of brain tumors in children are likely to have an intact Rb1 protein. You have approached for this study because tumor has been identified to have an intact Rb1 protein”

Not one DIPG patient is on this trial. We would be the first at CHLA. And we don’t know if Katie has this Rb1 protein. We can’t biopsy, so we stab in the dark, and hope. Katherine King’s life is dependent on a drug that we don’t know will work, but is promising, in the petri dish and in lab mice. We have to stop all other drugs, that may, or may not be working, to take this hopeful drug that may, or may not work as well, and hasn’t been tested on any other pediatric patients. The sad look on the doctors face is familiar, yet stark, every time.

That is all I have, and could possibly bear, for today. But no matter what, I wanted to update you all. You all have done so much for Katherine and us, and you deserve an update.

Thank you…

– mom

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Her Tumor is Back

Today was hard. Katie was emotional all day, and I had a lump in my stomach since last night. I told David I had a bad feeling about this MRI. The same feeling I had when I walked her into CHOC on June 1st. So you probably have guessed, we didn’t get the outcome that we were hoping for. Normally, in a situation like this, I would hunker down and gather up my thoughts, and hide a little, and make decisions. We would talk, and decide our next steps, and then share them with family and friends. This is what we did when Katie was diagnosed on June 2nd. Gratefully though, we have all of you supporting us, wishing, praying, sending good thoughts, waiting for an update. Because of that, I am going to tell you tonight that sadly, Katie’s tumor is growing. And from what I can see from the measurements, it’s growing rapidly. She is practically at the same measurements as she was when I brought her in on June 1st. Below are her numbers from her MRI’s, and they are a stark reality of the DIPG existence with which we live. As hard as they are to read, I have to accept them. Katie’s tumor is growing inward, towards the center of the brain. The measurement numbers for cm’s and mm’s, in regards to a brain tumor, mean a lot. It’s unbelievable how something so tiny, and miniscule, could ruin the life of a child, a family, a community. Our Oncologist immediately suggested moving forward with trials and reradiation. This is a touchy subject for me, as I do not feel reradiation is in her best interest. I am fearful of necrosis, and her suffering more than is necessary for a 0% survival rated cancer. These are not my thoughts alone. These are concerns brought up to me by the many Dr’s who have treated her. As well, I’m actually quite shocked that reradiation was an option, as this was most definitely not in her best interest a few months ago. Reradiation was something that was to be a “last resort” in previous discussions, and now it’s one of the only options she has, which scares the hell out of me. So we will have to meet with the Oncology Radiologist and decide if reradiation is in her best interest, period. I trust her (as I do Dr. Shen), as she is the reason we got this extra 6 months with Katie. As well, I am not too keen on any trials, as she would have to stop the Panobinostat, Avastin and CBD, and I can’t help but think that these meds are part of what’s keeping her stable and with us so much longer then some children with this horrible disease have been. I know for a fact it’s kept her off steroids due to her counts. I don’t want to change anything, selfishly. I want to love her to pieces, and walk her through the end of this with no pain and no suffering and no extended agonizing experiences, as some of these treatments may cause. However, I have to be open minded to the wishes of our family and think of what Katie would want. She would want to fight, even if it’s a little bit more. So we will keep fighting this evil cancerous tumor. We meet with CHLA next week, and we are going to send her scans to Dr. Monje at Stanford, Dr. Souweidane at Weill-Cornel, Dr. Anderson at City of Hope, Dr. Robison in CHLA, and as well Dr. Goldstein who works with CannaKids out of LA, and ask them for their opinions. Who knows, maybe something is out there that none of us have heard of. We will keep reaching out, and hoping, because why wouldn’t we, right? We will keep doing what’s in the best interest of Katie. I know my child, and if she was old enough to tell me what she wanted, knowing her circumstances, she would ask me to keep trying, and not give up. Not just yet. She would ask me to not take away her quality of life as well though too. Not to dope her up with meds and therapies that may hurt her physically, and mentally, or incapacitate her. She would also want us to make this time memorable, while she’s fighting. So this is what we will do. I am so completely broken right now. I am devastated. This past 6 months isn’t enough. I wasted so much time doing things that were not important, waiting for a progressing tumor, when I shouldn’t have been. Oh the regret…. I have got to learn to get past this, and now, before I lose more time. I am not going to waste any more time. I just can’t right now. Also, I will do my best to get back to everyone who has texted, called, IM’d, and PM’d me. If you can’t get ahold of me, and you need a response urgently, please feel free to reach out to my family, as they are all our backbone right now, and the reason why I look so calm, stable and under control a large quantity of the time. I’m sure you know who most of my strongest supporters are, as well Cynthia Rieck-Whisler is a good contact, she’s my sister. It takes a village…

6/2/2015 4.5 x 3.4 x 3.8 cm.
8/18/15 3.6 x 2.6 x 3.2 cm.
10/14/15 4.1 x 3.0 x 3.3 cm.
12/10/15 4.4 x 3.2 x 3.8 cm.

Below is a picture that we took at #MaxLoveProject today with Abigail. She had so much fun, and couldn’t hug Abigail enough. Even in this whole mess, she is turning into such a compassionate, loving young lady like Tori and Alissa. I love these girls so much. I am grateful for every day. I promise girls.

-mom

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