Tonight is a very special night for my grandparents. My grandad is being inducted into the Colorado Hall of Fame for starting a ski resort - Keystone in Keystone, Colorado in the 70's. It actually set a standard of environmentalism for all ski resort since then. One cool thing he thought of was to have helicopters brought in to put up the lifts so as to maintain the trees etc. It is also the first true Family Friendly resort as well. This was the first of it's kind. He also was the one to bring in all of the investors (unfortunately our family isn't one of them, but they do have a GREAT plot of land at Keystone where they live!).
He truly is my role model in so many ways and has always made me feel like I can do anything I put my mind to. He always made me feel being female didn't matter in life, well except when I wanted to go duck hunting with him :). I just love this article in their local paper... it really describes the two of them perfectly! I love how he loved to hire women "because they are smarter". I think he is just trying to keep peace at home after 66 years of marriage ;)
http://www.summitdaily.com/article/20120826/NEWS/120829851
If it wasn't for him and my grandmother I don't think I would be the strong individual I am to handle what all of us are going through. I am often told (by my brother in a derogatory way when he is mad at me :)) "OK, JANE"(my grandmother's name). My mother says I am a bulldog just like her too... I am glad as I have gotten everything I wanted for Elan because of it! THey have been so supportive and even drove from Colorado to Indiana to see the Proton Center for themselves. They are both 89 and still downhill ski! We hope to join them this year and teach Elan to ski in a few more.
Friday, October 26, 2012
Wednesday, October 24, 2012
MRI Day
So Elan is right now in the MRI while Erik and I are in the cafeteria waiting. We went up to the children's hospital to basically distract us and ran into several of Elan's nurses as well as both doctors who took amazing care of him in the PICU (Ped. Intensive Care Unit). Just great to be able to give them great news of how well Elan is doing. They don't often get this kind of news.
We had the same anesthesiologist as we had a few times ago. He is so kind and caring. I would guess late 50s. He always is so thorough when going over Elan's history and so positive! He and everyone there were blown away at Elan's progress.
We went to see Elan in the recovery and we had to wait 2 hrs to rule out Malignant Hypothermia - rather a shock. This is the first time Elan really has ever had an issue with anesthesia . IT would be unbelievably odd for him to have it esp since this is around the 40th time he has undergone anesthesia but his breathing went a bit out of whack. If it was his 2nd or 3rd time, yeah, but 40 or 50th? Not likely. They switched monitors during it all but at the same time changed a few other things so just wanted to rule it out. It came back negative which is great because unfortunately he will be going under anesthesia for several more years (hopefully!)
Finn had a blast while we were at the hospital with my mother and even wanted her to take him to gymnastics. He is so cute there! It is at a real gymnasium so all the great equipment. There are 2 girls and one other boy during his time. A young man - I would guess around 16 goes and trains - the 2 boys are in awe when he gets on the horse - so adorable!
So we were feeding Elan with a Whole Food meal replacement (photo below for those feed tubing and wondering).
well I have only used a few times and was a bit distracted so didn't stir as well as I should have. So we clogged the MicKey! This is the first time this happened in all these months. Thankfully we were at the hospital. Well they tried to get us a replacement there and they made tons of calls for us but of course didn't have his specific size in the entire place. We only replace every 3 months and insurance hasn't approved of a replacement - as if not having an extra is a good idea. What if he couldn't take anything by mouth? It was leaking too after all of the messing around with it... We ended up not having one at home after all. Erik was at work and started calling around with one being sent overnight as the resolution (may not be covered.... we will see about that :)) The hospital sent me home with Coke to eat up the clog once I get it out of him. Well I had to take Elan's micKey out all by myself and keep him on his back (not easy). This is because it is just like an ear piercing in that it can close up again so had to be fast... but after about 20 minutes got it out. Just not a fun day!
Well Elan and I had fun after that just the two of us!
We had the same anesthesiologist as we had a few times ago. He is so kind and caring. I would guess late 50s. He always is so thorough when going over Elan's history and so positive! He and everyone there were blown away at Elan's progress.
We went to see Elan in the recovery and we had to wait 2 hrs to rule out Malignant Hypothermia - rather a shock. This is the first time Elan really has ever had an issue with anesthesia . IT would be unbelievably odd for him to have it esp since this is around the 40th time he has undergone anesthesia but his breathing went a bit out of whack. If it was his 2nd or 3rd time, yeah, but 40 or 50th? Not likely. They switched monitors during it all but at the same time changed a few other things so just wanted to rule it out. It came back negative which is great because unfortunately he will be going under anesthesia for several more years (hopefully!)
Finn had a blast while we were at the hospital with my mother and even wanted her to take him to gymnastics. He is so cute there! It is at a real gymnasium so all the great equipment. There are 2 girls and one other boy during his time. A young man - I would guess around 16 goes and trains - the 2 boys are in awe when he gets on the horse - so adorable!
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| in recovery with 2 nurses who are regularly up there and our anethegiologist |
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| drinking juice - arggh! (See below why giving that to him) and watching netflix - what would we do without that these days in the hospital? |
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| Rhonda our nurse this time. |
Well Elan and I had fun after that just the two of us!
Playdough outside after being inside. Notice Elan is drinking milk now (goat's milk)! He does water out of a regular cup too without coughing etc.
Friday, October 12, 2012
Quick Update
Hi!
So Erik called the doctor yesterday who published the paper and she was so kind to call us back last night! She didn't have a whole lot to add but just nice to thank her in "person" and tell her we are so willing to be contacted etc. We asked her what motivated her the reason Yale did the study was because they had an adult patient - how statistically odd is that? Less than 50 cases ever of an adult. Blogger wouldn't let me save it as a PDF so if you want to read it just email me at erik_karrin@hotmail.com - basically, Elan received the absolute best treatment possible based on 144 patients retrospectively. This paper, though very small statistics, really gives us peace of mind. The chemo protocol is just so devistating and it would be wonderful if we cure Elan without it so others can follow the less toxic path.
I just hope with us, the previous girl in Iowa 7 yrs out cancer free and the actual documentation of more patients, even though retrospective, will help a future family to get what they want without the heartache we went through. Being turned down by one of 4 proton centers in the WORLD able to handle kids (my parents are so amazing btw they were so there for us!); This is because each treatment they have to be inoculated (put to "sleep") so they have to have a full board of anesthesiologists - all super amazing and awesome - i wish they were here for Elan's MRI's! - Elan was 36 times in Indiana BTW and every time he has an MRI etc. At this point I think Elan has been put to sleep around 50 times.
But being accepted by one is BEYOND amazing esp. since we are not doing standard protocol. We just know how loving and compassionate Indiana is. Cancer kids up against cancer kids really is a tough deal at other locations IE Boston. when it comes to who gets the beam and who doesn't everywhere else besides Indiana. Thankfully Indiana is non profit - the only one that isn't! They were willing to take us on.
It is so sad to know that so many people don't realize how unscientific the world of science really truly is vs what they think. It is all politics. Thankfully 10 years of being in the science world prepared me for the truth of the situation - even though I was still shocked at how political it was/is. I am just so, so thankful for being able to talk to doctors and read statistics! I know that plus our personal belief in not wanting to have blood transfusions because of Biblical principles we have our Elan. An Elan that is at the park, back yard, picking his nose etc. We were given 1 to 6 months and sent home with hospice. Tonight we have a kid saying new words and singing super annoying Barney songs!
Below are videos for my Grandma Jane - she is amazing By the way! See, he is doing great! (You have to push the play button and wait a minute for the videos to load)
So Erik called the doctor yesterday who published the paper and she was so kind to call us back last night! She didn't have a whole lot to add but just nice to thank her in "person" and tell her we are so willing to be contacted etc. We asked her what motivated her the reason Yale did the study was because they had an adult patient - how statistically odd is that? Less than 50 cases ever of an adult. Blogger wouldn't let me save it as a PDF so if you want to read it just email me at erik_karrin@hotmail.com - basically, Elan received the absolute best treatment possible based on 144 patients retrospectively. This paper, though very small statistics, really gives us peace of mind. The chemo protocol is just so devistating and it would be wonderful if we cure Elan without it so others can follow the less toxic path.
I just hope with us, the previous girl in Iowa 7 yrs out cancer free and the actual documentation of more patients, even though retrospective, will help a future family to get what they want without the heartache we went through. Being turned down by one of 4 proton centers in the WORLD able to handle kids (my parents are so amazing btw they were so there for us!); This is because each treatment they have to be inoculated (put to "sleep") so they have to have a full board of anesthesiologists - all super amazing and awesome - i wish they were here for Elan's MRI's! - Elan was 36 times in Indiana BTW and every time he has an MRI etc. At this point I think Elan has been put to sleep around 50 times.
But being accepted by one is BEYOND amazing esp. since we are not doing standard protocol. We just know how loving and compassionate Indiana is. Cancer kids up against cancer kids really is a tough deal at other locations IE Boston. when it comes to who gets the beam and who doesn't everywhere else besides Indiana. Thankfully Indiana is non profit - the only one that isn't! They were willing to take us on.
It is so sad to know that so many people don't realize how unscientific the world of science really truly is vs what they think. It is all politics. Thankfully 10 years of being in the science world prepared me for the truth of the situation - even though I was still shocked at how political it was/is. I am just so, so thankful for being able to talk to doctors and read statistics! I know that plus our personal belief in not wanting to have blood transfusions because of Biblical principles we have our Elan. An Elan that is at the park, back yard, picking his nose etc. We were given 1 to 6 months and sent home with hospice. Tonight we have a kid saying new words and singing super annoying Barney songs!
Below are videos for my Grandma Jane - she is amazing By the way! See, he is doing great! (You have to push the play button and wait a minute for the videos to load)
Thursday, October 11, 2012
Interesting Link
Here is a link from a medical conference this May - this is a MD student's poster session. She references the exact same data we found to make the decision to do just Proton Beam with Elan. How thrilling to find this! Hopefully others will be encouraged by it too and feel more comfortable turning down the standard protocol. Remember, the current protocol is only based on 23 kiddos. Crazy!
Update 2 - Farm and Beach weekends and 5 K
So here is part two from the past few weeks... we took the boys on the "Know your Farm" tour. It pains me to have paid $30 for this having grown up in Iowa! Oh well, it was a blast! Elan has an allergy to milk ever since all of this tumor business so of course we had eczema for a week afterwards - but he had a great time! Finn picked out the shirts for this trip. Of course it was 90 degrees and we had to do a wardrobe change :)
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| you can see his smile a bit here. More symmetrical |
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| Finn was so serious on the hayride. Really listening to the tourguide. |
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| see... I let him even have a few sips of CHOCOLATE!!! I am balanced :) |
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| Finn did have fun.. just didn't want his pic taken. |
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| totally fascinating. Every nursing mom needs one of these :) |
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| cute, right? |
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| Panda! Notice he has day and night time undies. |
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| Finn's feet after the beach |
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| Panda |
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| Breakfast now a days... |
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| Finn was cold from running in the water! |
| Elan didn't want the doughnut! Even when he is on vacation he is good! This place was so cute and a MUST at Carolina Beach. Been around for years and even in Details as best doughnut. I am not much of a doughnut gal but really liked it. Fun Sat AM activity to get and then eat on the board walk. |
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| Looks like a real paparazi shot |
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| From a few weeks ago one weekend during our volunteer ministry work. |
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| Elan wanted to try and stand to go to the bathroom. He didnt but fun to try :) |
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| 5 K weekend! We ran a 5 k with both boys to support Kid's Path - the hospice ELan was in before Proton Treatment. We are not in it now! |
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| RED face! |
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| Erik with one of the Hospice Doctors |
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