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Wednesday, May 11, 2011

Stryder had another check up Monday with the ENT. He has several swollen lymph nodes on the left side of his neck that look like a string of pearls. I went to his PCP about 6 months back and she said to wait 6 weeks to see if they go down. I knew they wouldn't because they were already there for more than 6 months, but they have to check. She also did a blood check and said that his levels were high. She then referred us to an ENT who deals with small children and cancer. He looked at them and of course said that they do not follow the typical pattern of anything and wanted to do an ultra sound, so we did.

The US came back showing them not too abnormal and that they were on some nerves and a biopsy could potentially paralyze him. The best thing was to watch them and come back in two months to see of they would have shrank or anything has changed. He said that if it is cancer, it's slow growing and we can still catch it.

We went back Monday and I FULLY expected to hear, oh, they look good, move on. But that's now what happened. He now has them on the right side and the left side is no longer just a string of pearls. So, another ultra sound on Monday to see how much change and determine the best place for a biopsy. We meet with him again on Tuesday. I was blown away and had a horrible day, not expecting to still have no answers and still have to move towards the thought of Stryder maybe having cancer.

After that appointment, we went to another speech therapy and once again she has no ideas on what may work for him. Stryder is so intelligent and so eager, but his word associations are so off the wall. She offered one suggestion, again, not knowing it will work at all: Stryder can say the word NO, but not for the word no, for that he says MOO. We know he is capable, but the word No to him is MOO (yes, like a cow) and no matter how we try to get him to change the word to NO, he can't. We did see that when he sees the letters N-O- he will say NO, so that's our plan-write the letters on his hand and have him look at it BEFORE he says the word and set him up for it. We have no idea if that will work or not, but we will see. I did try something like this with the word OUCH and BUS. When we started his word for bus was BU, but now it is BEE, which made it worse LOL.

We are working hard to get our Karoaoke fundraiser going and also raising funds so we can go to the Mayo Clinic in MN. So far, we have the hotel done and the airfare is waiting to make sure there is room for us, but it is paid. It's a huge relief. Now we are working towards the food and DR's themselves, plus trying to prepare for the unknown when/if we get a diagnosis. It's pretty scary living your life without knowing what the future may hold.

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1 comments:

Autumn said...

So sorry to hear about Stryder. My son had the same type of nodes on his neck this past summer and I was terrified. My father died from Hodgkins Lymphoma, so while everyone was telling me it was nothing, I was saying I just can't be optimistic! It's so scary not knowing. I am from MN and know the Mayo Clinic is wonderful! I wish you the best of luck and will keep you and your family in my prayers.
xxAutumn

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