So as always, loads happening at the Miller abode. Tonight Erik was able to talk to our "rock star" example of AT/RT's parents! All I can say is full on RELIEF! It is the patient out of IOWA of all places that had a resection similar to Elan's, did only radiation and then TCM plus herbs and is now 7 years cancer FREE!!!! We found them from a paper written by their doctors back when she was only 17 months out cancer free. She was 7 years old at the time, which is the better age to have AT/RT as over 3 they have 78% chance of survival vs. under 3 of around 10 to 15% (I honestly chalk this totally up to radiation or no radiation). Well 7 years later this 14 year old is 100% cancer free!
So Erik talked with them while I took care of baths - I must say I prayed the entire 45 minutes straight. They didn't even know the doctors had written about them! They even said a few major points were incorrect such as they fed her a high fat diet and the paper said low fat... makes much more sense because all the foods were high fat and I really wondered how they pulled it off as low fat :). They didn't get 100% results from the radiation and were so excited to hear about Elan's response. They said that her vitamins helped her immune system to take care of the residual (left over) tumor - what we hope to have happen with E.
Just beyond thrilling for us to be in contact with a family we have been reading and scouring about. Erik had contacted the doctors last week and we just can't get over the family's willingness to speak and share. She is a nurse and knows exactly what the type of chemo recommended does. Just kind of amazing to hear someone with our ideas had the outcome we so desperately want for Elan - all without the side effects! I just hope we find a more humane and easier way to treat this dreadful cancer!
I promise more next time! just wanted to share xo
Monday, September 17, 2012
Thursday, September 13, 2012
Update - all good!
I feel awful for not doing a proper update! This one will be pretty short and pretty rambling since 11 PM and I have to be up at 5. As my acquaintances in Higher Ed know, this is the crazy time of year for work, for sure! Thankfully I have great support from my manager as well as other team members to help me juggle all the needs of Elan. I also have a FANTASTIC mother who watches both boys while I am on campus - so great to know they are in the best of hands. Finn actually gets upset when it is a "mommy" day now. He even asked me if grandma can be with us on "family days" (weekends). Bummer for me, but also total relief that the boys are having a blast with her. Tomorrow she is hosting friends for a "teddy bear picnic" like the song - how cute, right?
So you must be wondering how Elan is doing? Well, great! He just still hasn't let go of us to make steps on his own yet. I chalk it up to him just being Elan. We heard from both Indiana University (the proton doctors) and Dr. Heafner, the neurosurgeon from here that did his resection and both teams are jaw dropped shocked at Elan's response. They truely are amazed. I can't remember if I mentioned this - too lazy to look back in the past blogs but when they gave us the good MRI results the next day I called Elan's old hospice nurse ("old" since he isn't in it anymore!) to give her the good news. Well she said she already knew because she spoke with one of the oncologists in the team and they told her they are in shock over his reponse. They had no hope it would turn so great. The doctors in Indiana told us they were just hoping to stablize the tumor from growing. No one even hoped for such as drastic response and it even being to the point of disappearing in the next one. No one wants to use the possible hope for the "c" word (cure) or NED yet since it is only 6 weeks out and does have a spot which the neurosurgeon is calling either "residual tumor" or no tumor. Of course it was his nurse that called to give us that so we couldn't ask questions of what that exactly means... but of course knowing us we have great connections to him! One of our good friends from our congergation happens to be a nurse in surgery with him TOMORROW and she will ask for clarification. He may not tell her anything because of HIPA laws but we know the only other way is through an appt and that wouldn't be for a month - arrrgh, overly worked neurosurgeons! I must say, seeing what they do, he does deserve his pay.
We also heard back from the oncology group meeting and the group consensus is that doing interthecal at this point could lead to toxicity levels so we are going to wait and rescan every 2 - 3 months and reassess. They do recommend an oral (pill) chemo for the time being. We meet in a week with our oncologist to discuss if this is something we want to pursue right away or not. I am glad they came back so definative. We keep praying for things to be black and white and they are panning out to be, once again!
Dr. Heafner is going to present Elan to the neurosurgeon's group to see if there are any other ideas too regarding chemo. If different then what the oncology group came up with he will let us know. Good to have 2 groups looking at him for sure!
I did get to chat with one of my resources yesterday about doing the oral chemo only. She has her PhD in chemistry dealing with the brain and cancer so a pretty good contact! She has actually sat in on brain board meetings - the ones with multiple groups not just the oncology teams and gave me a behind the scenes take - basically they really don't know and just come up with ideas. Just good to know we are all kind of just trying our best. She also helped me understand a bit of what oral chemo can do and helped me not to be as concerned about it. At one point it was said to me the kind they are recommending in oral form is to be more of a "palliative" option so this concerns me as to why give him something if it won't kill the cancer. We will see. it is etoposide for those curious.
I will update about other things shortly and with pictures!
xoxo!
So you must be wondering how Elan is doing? Well, great! He just still hasn't let go of us to make steps on his own yet. I chalk it up to him just being Elan. We heard from both Indiana University (the proton doctors) and Dr. Heafner, the neurosurgeon from here that did his resection and both teams are jaw dropped shocked at Elan's response. They truely are amazed. I can't remember if I mentioned this - too lazy to look back in the past blogs but when they gave us the good MRI results the next day I called Elan's old hospice nurse ("old" since he isn't in it anymore!) to give her the good news. Well she said she already knew because she spoke with one of the oncologists in the team and they told her they are in shock over his reponse. They had no hope it would turn so great. The doctors in Indiana told us they were just hoping to stablize the tumor from growing. No one even hoped for such as drastic response and it even being to the point of disappearing in the next one. No one wants to use the possible hope for the "c" word (cure) or NED yet since it is only 6 weeks out and does have a spot which the neurosurgeon is calling either "residual tumor" or no tumor. Of course it was his nurse that called to give us that so we couldn't ask questions of what that exactly means... but of course knowing us we have great connections to him! One of our good friends from our congergation happens to be a nurse in surgery with him TOMORROW and she will ask for clarification. He may not tell her anything because of HIPA laws but we know the only other way is through an appt and that wouldn't be for a month - arrrgh, overly worked neurosurgeons! I must say, seeing what they do, he does deserve his pay.
We also heard back from the oncology group meeting and the group consensus is that doing interthecal at this point could lead to toxicity levels so we are going to wait and rescan every 2 - 3 months and reassess. They do recommend an oral (pill) chemo for the time being. We meet in a week with our oncologist to discuss if this is something we want to pursue right away or not. I am glad they came back so definative. We keep praying for things to be black and white and they are panning out to be, once again!
Dr. Heafner is going to present Elan to the neurosurgeon's group to see if there are any other ideas too regarding chemo. If different then what the oncology group came up with he will let us know. Good to have 2 groups looking at him for sure!
I did get to chat with one of my resources yesterday about doing the oral chemo only. She has her PhD in chemistry dealing with the brain and cancer so a pretty good contact! She has actually sat in on brain board meetings - the ones with multiple groups not just the oncology teams and gave me a behind the scenes take - basically they really don't know and just come up with ideas. Just good to know we are all kind of just trying our best. She also helped me understand a bit of what oral chemo can do and helped me not to be as concerned about it. At one point it was said to me the kind they are recommending in oral form is to be more of a "palliative" option so this concerns me as to why give him something if it won't kill the cancer. We will see. it is etoposide for those curious.
I will update about other things shortly and with pictures!
xoxo!
Tuesday, September 4, 2012
Parent's anniversary party and ramblings
Finn is always coming up with clever things lately. This week he decided to throw my parents an anniversary party (about 1 week late - hey at least we are all together) - and he had my mom making decorations all day while she was watching them. I love how she was pulled into the work for HER party. That is my son, the delegator! They even made a big bow tie and banners - too fun! He must have overheard Erik and me talking about it the day before. Here are some pictures...
It was a good day coming home to a house full of happy people and two happy kiddos. they have such marvelous times with my mom.
This 3 day weekend was pretty emotionally rough to be honest. Erik and I tried to get our house more in order - cleaning out the closets that basically were holding ground for boxes we hadn't gotten to from our move into the house 2 months before Elan's diagnosis.
I think it was just focusing on such normal activities that can get me in a bit of a "funk". It was tough just thinking about how well Elan is doing and hoping it will last and the MRI in a month is better than this one and comes clean and clear vs this months being the best we can get. We just pray and pray and PRAY for the right direction and to make the best decisions for Elan. it is hard for others to know what to do/ say but know how much we appreciate just a "how are you doing?" and a hug etc. Really helps! It is tough to make the BEST decisions for Elan... such a balance of quality of life, unknowns of the disease, high likelihood of relapses etc. Please pray for us to make the best decisions for Elan.
I guess being past the 6 month mark is what brings it all up. We were first told he would only live 1 to 6 months and now we have true HOPE of a cure. Today on my closed group AT/RT moms on Facebook (don't be jealous of my awesome closed group! :)) one of the first AT/RT families I found via Google the day we received his diagnosis went to KINDERGARTEN!!!! I love the group because there are so many with NED (no evidence of disease) years out. When you are given statistics of "10% chance with your son's resection" etc so heart breaking but to see we could be that 10% now and doing it the Elan way just so amazing.
I just can't thank Indiana enough for taking him on while allowing us to make the right decisions for our family. He is on the "Elan" protocol and doing great!
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| My fan - design by Elan |
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| I wish this was a better exposure - I have such a hard time capturing his real simile - this is it! |
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| Finn's outfit - notice he put on a face mask from the hospital. |
It was a good day coming home to a house full of happy people and two happy kiddos. they have such marvelous times with my mom.
This 3 day weekend was pretty emotionally rough to be honest. Erik and I tried to get our house more in order - cleaning out the closets that basically were holding ground for boxes we hadn't gotten to from our move into the house 2 months before Elan's diagnosis.
I think it was just focusing on such normal activities that can get me in a bit of a "funk". It was tough just thinking about how well Elan is doing and hoping it will last and the MRI in a month is better than this one and comes clean and clear vs this months being the best we can get. We just pray and pray and PRAY for the right direction and to make the best decisions for Elan. it is hard for others to know what to do/ say but know how much we appreciate just a "how are you doing?" and a hug etc. Really helps! It is tough to make the BEST decisions for Elan... such a balance of quality of life, unknowns of the disease, high likelihood of relapses etc. Please pray for us to make the best decisions for Elan.
I guess being past the 6 month mark is what brings it all up. We were first told he would only live 1 to 6 months and now we have true HOPE of a cure. Today on my closed group AT/RT moms on Facebook (don't be jealous of my awesome closed group! :)) one of the first AT/RT families I found via Google the day we received his diagnosis went to KINDERGARTEN!!!! I love the group because there are so many with NED (no evidence of disease) years out. When you are given statistics of "10% chance with your son's resection" etc so heart breaking but to see we could be that 10% now and doing it the Elan way just so amazing.
I just can't thank Indiana enough for taking him on while allowing us to make the right decisions for our family. He is on the "Elan" protocol and doing great!
Monday, September 3, 2012
Peach's NEET FEET!
So if anyone knows of a better way to make Elan happy it is Peach's NEET FEET. THis is an AMAZING, AMAZING non profit by a lovely young woman who donates her time and organizes other artists to help her out. They donate personalized hand painted shoes to children with cancer and other diseases. Elan's have Elmo, a train, a cute gecko, his name and of course a cute peach! We heard about them while at the Proton Center and through another AT/RT mom's blog and I knew it would brighten Elan's life.... I just didn't realize HOW much. He has literally worn them 24 hrs a day EVEN to bed - so cute! The first few baths he was super bummed he couldn't wear them in the tub. Hopefully that gives you a picture of how special they are to him. And boy has he picked up the pace of walking too!
They arrived while we were at the hospital for his MRI so just the pick me up for arriving home. His face was just one huge smile when he saw them when we opened the box. I so wish I had taken a picture of that moment. He shows them off to everyone too!
Here are several of him in his shoes!
They arrived while we were at the hospital for his MRI so just the pick me up for arriving home. His face was just one huge smile when he saw them when we opened the box. I so wish I had taken a picture of that moment. He shows them off to everyone too!
Here are several of him in his shoes!
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| Walking all over the house - see his PJs - he sleeps with them for real! |
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| With Rachel helping me model my new shoes.... |
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| Train side |
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| So cute! |
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| On the way to the clinic with stickers to play with! |
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| Once again in Pj's and standing at the train table (where else?) |
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| At the park (eating the best invention ever - to go applesauce from Trader Joes!) |
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| Making Dad carry me (can't get my new shoes dirty yet) |
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| At the clinic - when we received the great news of his amazing MRI results! His favorite location - in the dump truck... |
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