Madi update: radiation and keto
It has been almost three weeks since I've posted on here, I know. Life is marching steadily onward and I have reveled in the headiness of things feeling normal (well, normalish) again. Max turned 10 on Thursday. Madi went on her school field trip to Canobie Lake on Monday. School ended for Max and Becca on Wednesday, and Max said good-bye to elementary school (middle school in fifth grade?!). Becca bid second grade farewell and has started her "I want a puppy" campaign in earnest. William finished preschool a couple weeks ago, but has been using his time efficiently by mess-making with Anna until the older kids get home, and then playing outside all afternoon. There may or may not have also been several mornings of binge-watching Paw Patrol, I admit. :) Anna has adopted the phrases, "that's not funny," and "don't you dare" and seems to be rocketing toward adolescence... as a newly minted two year old. Sigh. It has all felt so wonderfully routine and happy.
My mother-in-law and father-in-law are still here and have literally saved us this last month. Most immediately, they have been a stable extension of childcare for us. About a week before we learned of Madi's cancer diagnosis in April, my mother-in-law emailed asking if they could come visit in May. I responded that we had houseguests at the time and were booked solid with more houseguests and reunions/farewells, school events, etc... until June and could they please come a little later? She responded by saying that she felt really strongly that they needed to come in May. My heart sank because I knew my mother-in-law has a history of knowing things before they happen. I said, "ok," and within a few days, Madi was diagnosed with brain cancer. His parents drove cross-country stopping to visit family members, and ended up arriving right after my mom left in May, 2 days before Madi's second surgery, which we didn't even know would happen when they planned the specific arrival date. They're staying here for 2 months until Madi finishes radiation, which has been such a wonderful blessing. Whenever I think about what I would have done if hey had not be here, I get really overwhelmed with gratitude. They have really made everything feel stable and routine for our other kids.
Madi has to go to radiation every day M-F, and they only schedule a week at a time. You get your schedule on Friday for the next week and you get what you get. Since the proton center is so busy, they have clustered patients who have similar settings on the machine in order to be able to treat more people. We can make scheduling requests, but it's never a sure thing. Nevertheless, we are extremely lucky because there are only about 25 proton centers in operation in the US (with many more under construction) and MGH was one of the first to open its doors. Proton therapy is a lot more concentrated with a lot less collateral damage to surrounding tissue. Typically, since GBM tumors are erratic and poorly defined, they use photon therapy (traditional radiation), which scatters rays around the surrounding brain tissue and can get the microscopic bits of tumor. But it also irradiates the brain from the very top or side, all the way down to the actual tumor. So it causes a lot more brain damage. Since Madi's tumor was so well-defined and since she's so young, our doctors felt that proton therapy would be a better option for her. Proton therapy only irradiates the tumor itself, with a surrounding "margin" of 1-2 cm, but doesn't irradiate the healthy brain tissue that it passes through in order to get to the target area.
She just finished her second week in radiation and we have not seen any side effects yet. Our radiation oncologist said patients often do not get tired from the radiation until 2-4 weeks after it is over, so we are expecting its arrival sometime in August. We have met so many interesting people during the treatments with such interesting and humbling stories. One of the women in our cluster had an extremely rare tumor in her heart. She comes in every day with her dog and usually one other family member. She is always happy and talkative and has a thick New England accent. The proton beam has made it possible for them to treat the area inside her heart without killing her. She finishes next week. I will be sad to see her go. Every time someone finishes their treatment, they ring a bell and everyone claps. It's such a small thing, but it represents so much. I can't wait for Madi's bell-ringing. She has four weeks left.
We also started the keto diet with Madi (using a modified, less-strict version for the whole family). I don't have the bandwidth to make two meals three times a day. My mother-in-law helps me clean and prep and evaluate every meal to see if it's worth repeating. We have been able to find enough replacements for normal high-carb things that it still feels pretty comfortable. My sister-in-law was able to help me tweak the code on MyFitnessPal to make it track what we needed it to track and adjust the goals so Madi can see where she is each day in terms of fat to carb/protein ratios. I will be forever grateful to her for this. It has been the only way we have been able to sustain what we are doing and help Madi have ownership in it. Madi seems to be handling the diet changes pretty well and has lost a couple pounds of her steroids weight gain, which I think motivates her to keep up with it. She also seems to be much happier and more light-hearted than she was before. I have heard her laugh more in the last few weeks than I have in a long time. I don't know if it's related to the diet or just being off steroids and on more of a normal routine, but it's a wonderful by-product of whatever it is!
We are pioneers in this diet therapy, especially in the pediatric realm, so I have had to do most of the legwork and research myself. Our dietitian is completely enthralled with it (as are our doctors). They have read about it, but have not had any pediatric patients actually try it for brain cancer (though have had some adults use it). They are following her cholesterol levels, CO2 levels, and calcium levels, among other blood markers, just to make sure she is staying healthy. It is nice to have a supportive team and be able to measure Madi's progress in a way that I couldn't on my own. It also feels nice to be able to share all the information and resources I've amassed over the last few months. This diet has been used for 50+ years to treat epilepsy that does not respond well to medicine with staggering results (i.e. many patients can stop taking medication altogether). Doctors don't know why it works so well. While there is still no definitive evidence that it improves prognosis in brain cancer patients, research and preliminary studies are very promising, especially when coupled with radiatiton. I feel like in 5-10 years this form of therapy may be pretty standard among GBM patients and it is such a low-risk method of supplementing our existing treatment regime, it makes sense to at least try it. It has not been easy, but now that we are getting into a groove, things are getting much easier.
Overall, things are going well. We all still have our days. Madi seems to have a good cry at least once a week. I actually am grateful for this because I think it means she's processing things a little at a time and that's good. I also have a good cry at least once a week. It always feels so overwhelming when it hits me, but I try to escape and just let it out, as uncomfortable as it may be, and then I feel 100 times better after I'm done. We all need to let the steam out from this massive pressure we are under right now and my body does it through crying, I guess.
I have about three more blog posts in the works and lots more information to post, but this one is long enough. Until next time.
My mother-in-law and father-in-law are still here and have literally saved us this last month. Most immediately, they have been a stable extension of childcare for us. About a week before we learned of Madi's cancer diagnosis in April, my mother-in-law emailed asking if they could come visit in May. I responded that we had houseguests at the time and were booked solid with more houseguests and reunions/farewells, school events, etc... until June and could they please come a little later? She responded by saying that she felt really strongly that they needed to come in May. My heart sank because I knew my mother-in-law has a history of knowing things before they happen. I said, "ok," and within a few days, Madi was diagnosed with brain cancer. His parents drove cross-country stopping to visit family members, and ended up arriving right after my mom left in May, 2 days before Madi's second surgery, which we didn't even know would happen when they planned the specific arrival date. They're staying here for 2 months until Madi finishes radiation, which has been such a wonderful blessing. Whenever I think about what I would have done if hey had not be here, I get really overwhelmed with gratitude. They have really made everything feel stable and routine for our other kids.
Madi has to go to radiation every day M-F, and they only schedule a week at a time. You get your schedule on Friday for the next week and you get what you get. Since the proton center is so busy, they have clustered patients who have similar settings on the machine in order to be able to treat more people. We can make scheduling requests, but it's never a sure thing. Nevertheless, we are extremely lucky because there are only about 25 proton centers in operation in the US (with many more under construction) and MGH was one of the first to open its doors. Proton therapy is a lot more concentrated with a lot less collateral damage to surrounding tissue. Typically, since GBM tumors are erratic and poorly defined, they use photon therapy (traditional radiation), which scatters rays around the surrounding brain tissue and can get the microscopic bits of tumor. But it also irradiates the brain from the very top or side, all the way down to the actual tumor. So it causes a lot more brain damage. Since Madi's tumor was so well-defined and since she's so young, our doctors felt that proton therapy would be a better option for her. Proton therapy only irradiates the tumor itself, with a surrounding "margin" of 1-2 cm, but doesn't irradiate the healthy brain tissue that it passes through in order to get to the target area.
She just finished her second week in radiation and we have not seen any side effects yet. Our radiation oncologist said patients often do not get tired from the radiation until 2-4 weeks after it is over, so we are expecting its arrival sometime in August. We have met so many interesting people during the treatments with such interesting and humbling stories. One of the women in our cluster had an extremely rare tumor in her heart. She comes in every day with her dog and usually one other family member. She is always happy and talkative and has a thick New England accent. The proton beam has made it possible for them to treat the area inside her heart without killing her. She finishes next week. I will be sad to see her go. Every time someone finishes their treatment, they ring a bell and everyone claps. It's such a small thing, but it represents so much. I can't wait for Madi's bell-ringing. She has four weeks left.
We also started the keto diet with Madi (using a modified, less-strict version for the whole family). I don't have the bandwidth to make two meals three times a day. My mother-in-law helps me clean and prep and evaluate every meal to see if it's worth repeating. We have been able to find enough replacements for normal high-carb things that it still feels pretty comfortable. My sister-in-law was able to help me tweak the code on MyFitnessPal to make it track what we needed it to track and adjust the goals so Madi can see where she is each day in terms of fat to carb/protein ratios. I will be forever grateful to her for this. It has been the only way we have been able to sustain what we are doing and help Madi have ownership in it. Madi seems to be handling the diet changes pretty well and has lost a couple pounds of her steroids weight gain, which I think motivates her to keep up with it. She also seems to be much happier and more light-hearted than she was before. I have heard her laugh more in the last few weeks than I have in a long time. I don't know if it's related to the diet or just being off steroids and on more of a normal routine, but it's a wonderful by-product of whatever it is!
We are pioneers in this diet therapy, especially in the pediatric realm, so I have had to do most of the legwork and research myself. Our dietitian is completely enthralled with it (as are our doctors). They have read about it, but have not had any pediatric patients actually try it for brain cancer (though have had some adults use it). They are following her cholesterol levels, CO2 levels, and calcium levels, among other blood markers, just to make sure she is staying healthy. It is nice to have a supportive team and be able to measure Madi's progress in a way that I couldn't on my own. It also feels nice to be able to share all the information and resources I've amassed over the last few months. This diet has been used for 50+ years to treat epilepsy that does not respond well to medicine with staggering results (i.e. many patients can stop taking medication altogether). Doctors don't know why it works so well. While there is still no definitive evidence that it improves prognosis in brain cancer patients, research and preliminary studies are very promising, especially when coupled with radiatiton. I feel like in 5-10 years this form of therapy may be pretty standard among GBM patients and it is such a low-risk method of supplementing our existing treatment regime, it makes sense to at least try it. It has not been easy, but now that we are getting into a groove, things are getting much easier.
Overall, things are going well. We all still have our days. Madi seems to have a good cry at least once a week. I actually am grateful for this because I think it means she's processing things a little at a time and that's good. I also have a good cry at least once a week. It always feels so overwhelming when it hits me, but I try to escape and just let it out, as uncomfortable as it may be, and then I feel 100 times better after I'm done. We all need to let the steam out from this massive pressure we are under right now and my body does it through crying, I guess.
I have about three more blog posts in the works and lots more information to post, but this one is long enough. Until next time.
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