Today marks 14.6 months since KK's GBM diagnosis. There were many days during those 14.6 months when I wasn't sure that KK would make it to this day this side of heaven. Too many days for this mama. I have tried not to make a big deal out of grades and report cards over the years, but we are celebrating that she is "above average" in this area!
There were a few incidents that sent my PTSD into overdrive this past week: closing one eye when she looked to the right so she wouldn't see double, right arm weakness and shakiness following IVC treatment,... I knew that the looming post-diagnosis anniversary exacerbated how I was feeling. These incidents had me second guessing the decision to reduce the dose of vitamin C from 75 grams to 50 grams since her saturation levels were high at 75 grams. I worried that the right-sided weakness was due to tumor growth while earnestly praying that it was just a symptom of swelling that would lead to apoptosis. I also prayed for wisdom, discernment, and peace. Thankfully, the right-sided weakness and shakiness went away by the next day. I am fairly confident apoptosis was happening...which leads me to believe that the 50 gram dose of vitamin C is effective. One thing I love about the Rothfeld Center is we will know for sure in about 10 days, since they drew blood last week to make sure that her saturation levels are still in cancer-fighting range.
Please continue to pray with us for KK's healing. We trust that God, not man, knows the number of her days and cancer can't change that!
Sunday, June 26, 2016
Wednesday, June 22, 2016
Charlie Anne
Just over a month ago, some friends from church put together a special bag for KK to give to another girl going through treatment. It was filled with all sorts of goodies and things to do while receiving an infusion. After the MRI on June 8, KK finally had a chance to give the bag away. When we got to the Jimmy Fund Clinic, KK saw a girl about 7 or 8 years old who looked sad. She brought the bag over to her and explained what the bag was. The little girl shook her head as if to say she didn't want it.* I felt badly about this rejection on behalf of KK, but KK was undeterred. She looked around the waiting room, found another little girl, and offered her the bag. The little girl was so excited and happy to receive this gift. After a few minutes (just enough time to go through all the goodies), the little girl and her mom came over to say thank you to KK. We found out the little girl's name is Charlie Anne. What a blessing it was to have a sweet "Charlie" to focus on while we waited for the results of what "Charlie" was doing inside KK's brain!
*A few moments after KK offered the first girl the bag, a nurse came out to get her and I overheard her father say that she wasn't feeling well at all.
Wednesday, June 8, 2016
No Soup for You
Or, rather, no burger for KK. And let me tell you, KK was perfectly content not getting a burger today because that meant there was no bad news!
They admitted that they had been scheduling scans every 6-8 weeks to keep an eye on areas of concern. After today's MRI, they feel comfortable waiting three months before the next scan. I understand how incredible it is for them to wait three months between scans knowing how fast Glioblastoma brain tumors grow. We were told to keep doing what we're doing!
I was doing pretty well leading up to the MRI today just knowing that KK was doing well physically. However, there was a moment right as I saw KK's team in the hallway when I tensed up and had to remind myself to breathe. It was so good to see them walk in very relaxed and lighthearted.
They are all happy with how KK is doing clinically (presenting physically). Dr. Manley said the scans were stable. He didn't even offer to show me the scans to go over them...that was okay though, since I already put in a request for a CD-rom at Children's and knew I would see them later.
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| MRI images from June 8, 2016 |
They admitted that they had been scheduling scans every 6-8 weeks to keep an eye on areas of concern. After today's MRI, they feel comfortable waiting three months before the next scan. I understand how incredible it is for them to wait three months between scans knowing how fast Glioblastoma brain tumors grow. We were told to keep doing what we're doing!
As a celebratory treat, KK had hot soup for dinner...and she's ready to go back to eating raw vegan tomorrow.
Sunday, June 5, 2016
All Figured Out
KK and I were talking to a sweet lady at church today. She shared that her family still prays for KK every night. When I told her that KK's MRI is on Wednesday, KK quipped that she is hoping for good news, but if it is bad news then she wants to eat a burger. She figures if the raw vegan diet isn't working, she might as well enjoy her favorite foods again.
Wednesday, June 1, 2016
Saturation
I am so grateful that The Rothfeld Center is willing to administer IV Vitamin C to a minor. They fully follow protocols set by clinics that have been front-runners in treating cancer patients with IV Vitamin C. One of those protocols includes testing blood serum levels to make sure the vitamin C saturation is at therapeutic levels (350-400 mg/dL).
The results of the test came back this week and KK is above the therapeutic range (above 500 mg/dL). Beth, the nurse practitioner, presented a few options:
I didn't want to make any changes without praying and doing research, especially since I was unfamiliar with saturation levels. I also didn't want to make changes until after the MRI next week.
I found the protocols that The Rothfeld Center follows. After deciphering all the medical jargon, I know that KK's saturation levels, though high, are not toxic (except to cancer cells).
I would appreciate prayers for wisdom and discernment. Selfishly, the idea of reducing treatments from three days to two days per week sounds wonderful. However, my understanding is that the half life of vitamin C is short. Therefore, I would rather do three treatments per week to keep the levels in cancer-fighting range longer. Now I have to decide whether or not to reduce the amount of vitamin C. Honestly, if the MRI shows that the tumor is indeed dying off, I don't see a compelling reason to change what we are doing.
I am grateful that money is not a factor in this decision-making process. Besides the fact that the cost of treatment at The Rothfeld Center is significantly less than what we were paying before, God has provided every penny we need to pay for KK's treatment for the next two months through the generosity of His people.
The results of the test came back this week and KK is above the therapeutic range (above 500 mg/dL). Beth, the nurse practitioner, presented a few options:
- Drop from 75 to 50 grams of vitamin C three times per week.
- Receive 75 grams of vitamin C two times per week.
- Continue to administer 75 grams of vitamin C three times per week.
I didn't want to make any changes without praying and doing research, especially since I was unfamiliar with saturation levels. I also didn't want to make changes until after the MRI next week.
I found the protocols that The Rothfeld Center follows. After deciphering all the medical jargon, I know that KK's saturation levels, though high, are not toxic (except to cancer cells).
I would appreciate prayers for wisdom and discernment. Selfishly, the idea of reducing treatments from three days to two days per week sounds wonderful. However, my understanding is that the half life of vitamin C is short. Therefore, I would rather do three treatments per week to keep the levels in cancer-fighting range longer. Now I have to decide whether or not to reduce the amount of vitamin C. Honestly, if the MRI shows that the tumor is indeed dying off, I don't see a compelling reason to change what we are doing.
If any of you lacks wisdom, you should ask God,
who gives generously to all without finding fault,
and it will be given to you.
~ James 1:5 ~
I am grateful that money is not a factor in this decision-making process. Besides the fact that the cost of treatment at The Rothfeld Center is significantly less than what we were paying before, God has provided every penny we need to pay for KK's treatment for the next two months through the generosity of His people.
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