Yesterday we had a pretty normal day. We took Elan in for treatment and a decent hour of 8:30 AM. SO much easier to have a normal structured day when he goes in early. When we had my grandparents here he was at 10 and 11 which was horrific! Remember we can't feed the kid so try to keep him distracted. No matter what time he goes in though he gets messed up with napping since he is sedated and given a nap that way. It makes it tough when it comes to bedtime. Of course Finn can't go to sleep if Elan isn't or if we have Elan in his crib crying. A small price to pay for Elan getting the treatment he needs though.
We found out about a family resource center associated with IU Health which has information regarding social workers and publications for kids about cancer so we of course headed there before picking Finn up from camp. They didn't end up have much for kids/siblings (seems to be a common occurrence but much better than Charlotte) but the woman there was great for me to talk with. You can tell the folks here are very well trained with just the right words and questions regarding rare and aggressive cancer - they should be since it is the cancer resource center. She also wanted to make sure we have the proper support. I explained how it is amazing but we have been very fortunate to have a great group of friends and family who are only 100% positive around us. I told her how the congregation here has been fantastic and how it is amazing how those who are super negative just kind of aren't around. We know it is another answer to prayers since those who are negative really send us into a tailspin. It isn't the time or place in our lives to deal with anything remotely negative - good to have it not an issue!
Terri - the lady at the Cancer center is an Oncology nurse and really was the first one to come out and give me comfort regarding the Elan protocol we have created and true hope based on what she has seen from other cases on our diet and supplement side of things. Every doctor besides Dr. Douglas basically says diet doesn't make a difference. Dr. Douglas is open and has seen has difference in people but can't say if it is the TCM, diet or radiation but at least not shutting it down. She said our idea about the cookbook was awesome and really needed (so you can see why I liked her). Something I can do in the future for a distraction if necessary - as if I don't have enough to distract me :).
We picked Finn up, had a normal afternoon of snack then nap. We then headed to the congregation meeting that night as Elan was feeling great and smiley. We were about 30 seconds from the closing song and prayer when all of the sudden he started coughing - which then made him throw up! Of course this was the one night Finn wanted to sit 3 rows from the front so everyone saw what happened. It had to also be his feeding from 2 hrs before which had all of his herbs with turmeric so quite a staining throw up. The friends were so kind about it and helped us in the Men's bathroom clean him up. They also took care of the seat for us back in the auditorium. Several called the next day to check in on us too. All radiation related but first time so far out from a feeding. After he did it though back to smiling! Such a kid! He just coughed and it made it happen - all the doctors said not to worry about it so we aren't - we have enough to keep us busy with worry that is for sure!
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