Today started off OK... weekends are great since I can nurse and feed Elan as soon as we were up. This isn't the way it is during the week as he can't eat for 8 hrs before sedation. Been somewhat OK so far since he has 8:45 or 9:30 appointments but next week he has 2 10:45 - SOOOOO not looking forward to those. I think we may wake up and then drop Finn off and head to a park for a bit or something.
We had a bit of a Finn melt down when we were about to start reading our Bible for preparation for the congregation meeting we were going to today when he really acted up. Lets just say it ended with him peeing on himself out of anger. We then were able to get out of him about what is really going on and had a good 45 minute conversation regarding Elan and the cancer. So therapeutic for all of us. We left the house with our smiley and kind child - only took 2 hrs to get that!
We were quite late but many had seen us before and I think our story has gotten around since many smiling faces. There are 3 English congregations and one Spanish here in Bloomington, IN but we have been just attending one. We like the 12 PM Sunday time slot - try and sleep in! :). So Elan was a bit loud so I went in the hallway for a few minutes with him. A nice lady around 55 to 60 came up to me and said "you are the one with the child at the Proton center, correct?" and then she asked which one and said it was Elan who she then loved up. She then proceeded to tell me her son was diagnosed with a bad leukemia (cant recall which one) 14 years ago and how he had only 1 in 9 chance of survival - but he is here! She then said "if only you could have Dr. Hock". I then said "you mean Randy Hock?" and she said "Yes". I then said he is part of our oncologist group of 4 in Charlotte, NC! How crazy is THAT???? We had known he moved from Indianapolis from the beginning and had been instrumental in getting us into Proton Beam (of course after we had asked for it). She was as shocked as I was. Now understand there are 4 congregations in the town and how many pediatric oncologists in Bloomington to Indianapolis??? Indianapolis is a good hour away from here as well.
She then explained how Randy was by far the BEST oncologist they had and offered several out of the box options - which she said is the only reason her son is now alive... sound familar to Elan??? She went on to say how Randy had actually been upset at first because they wanted him to explore other non-blood options instead of a full transfusion. However he did chat with the liaison committee and was given a list of other doctors who agree with our preferences to chat with. One happened to be a good friend of his from residency back in the day. After these conversations he was fully on board with them and realized it is truely just good medical practice to try other things first. Well 14 years later we are benefiting as he preferred not transfusing for Elan when his counts went low and went straight to Epogin and iron boosters which worked fabulously without risk of infections brought on by multiple transfusions. So I thanked her for all her hard work and we are benefiting from his great "out of the box" thinking. We just felt a real hug from above and answers once again we have the A+ team!
We had a bit of a Finn melt down when we were about to start reading our Bible for preparation for the congregation meeting we were going to today when he really acted up. Lets just say it ended with him peeing on himself out of anger. We then were able to get out of him about what is really going on and had a good 45 minute conversation regarding Elan and the cancer. So therapeutic for all of us. We left the house with our smiley and kind child - only took 2 hrs to get that!
We were quite late but many had seen us before and I think our story has gotten around since many smiling faces. There are 3 English congregations and one Spanish here in Bloomington, IN but we have been just attending one. We like the 12 PM Sunday time slot - try and sleep in! :). So Elan was a bit loud so I went in the hallway for a few minutes with him. A nice lady around 55 to 60 came up to me and said "you are the one with the child at the Proton center, correct?" and then she asked which one and said it was Elan who she then loved up. She then proceeded to tell me her son was diagnosed with a bad leukemia (cant recall which one) 14 years ago and how he had only 1 in 9 chance of survival - but he is here! She then said "if only you could have Dr. Hock". I then said "you mean Randy Hock?" and she said "Yes". I then said he is part of our oncologist group of 4 in Charlotte, NC! How crazy is THAT???? We had known he moved from Indianapolis from the beginning and had been instrumental in getting us into Proton Beam (of course after we had asked for it). She was as shocked as I was. Now understand there are 4 congregations in the town and how many pediatric oncologists in Bloomington to Indianapolis??? Indianapolis is a good hour away from here as well.
She then explained how Randy was by far the BEST oncologist they had and offered several out of the box options - which she said is the only reason her son is now alive... sound familar to Elan??? She went on to say how Randy had actually been upset at first because they wanted him to explore other non-blood options instead of a full transfusion. However he did chat with the liaison committee and was given a list of other doctors who agree with our preferences to chat with. One happened to be a good friend of his from residency back in the day. After these conversations he was fully on board with them and realized it is truely just good medical practice to try other things first. Well 14 years later we are benefiting as he preferred not transfusing for Elan when his counts went low and went straight to Epogin and iron boosters which worked fabulously without risk of infections brought on by multiple transfusions. So I thanked her for all her hard work and we are benefiting from his great "out of the box" thinking. We just felt a real hug from above and answers once again we have the A+ team!
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