November 20, 2008

Ok so its been WAY to long sense I last updated, but having not computer makes it kinda tricky. Ok so last time I wrote it was one week after Devin's surgery, he was doing great and we were due to go home very soon. Yeah well things didn't exactly happen that way.
Here is a list of events that have happened.

Ok Sept 10th Devin's surgery, Sept 15th round 6 Chemo. By the tie Devin recovered enough from the chemo for it to be safe for him to fly it was time for round 7 of chemo, so we decided to just do it here. After round 7 of chemo Devin got sick and ended up in the hospital on breathing treatments due to him wheezing. At this point the Dr's decided by looking at his history of breathing issues to give him the diagnosis of Asthma along with everything else lol. So now he is on 2 addition meds, including an inhaler. Ok so by the time all of this is over its time for follow up scans and tests to see how the chemo has worked. So again we just did them here. Well we got all the results back and still no change, still in the bones and bone marrow. SEVEN rounds of chemo and still no change, it was a very discouraging day.

After the Dr's read over the scan results they decided chemo was not working for Devin and wanted to move to something called Hot 3F8 (131 - 3F8) Basically its a radioactive monoclonal antibody that attaches itself to the cancer cells and allows the body's defense system to attack the cancer itself, along with radiation. It is transfused over a 1/2 an hour, then 24 hours later he gets a drug called Bevacizumab. This drug then blocks the blood supply to any cancer cells, thus helping the process of killing the cell. He will also receive the Bevacizumab 14 days later. There are less side effects with this treatment than chemo, the cell counts will still drop and there is risk of damaging his thyroid. Pain is the major side effect from this treatment, the children are in extreme pain during the infusion itself, but the pain disappears shortly after. They pre medicate them with pain meds, but the pain is hard to control. So Devin started this treatment yesterday. Let me just say wow...... that 45 minutes Devin was in pain was probably the hardest in my life. He curled himself up in a little ball and was in to much pain to even scream, he more like grunted. He got red and sweaty and it was just horrible. He broke out in hives, but they disappeared shortly after. Due to the treatment being radioactive, u have to limit you exposure to him, so the further away you stand the better. Yeah right, even the doctor was like no you need to hold his hand so he doesn't loose reality. Basically the pain was so intense they were scared that if Devin didn't see me for even 2 minutes he would loose it and even if I came back in he wouldn't know whats going on. Currently he is still giving of radiation, so he has to stay behind a lead wall and I have to limit how much I can go in with him. Now any of you who know Devin and how clingy he is too me KNOW that this is a very hard task lol. Well at least the worst is over. It takes 28 days to complete this cycle and he'll get another dose on day 29. Dr. Moedak hopes to be able to do 4 of these treatments, but it all depends on if he creates and antibody to the 3F8 called HAMA. If he does then he won't be able to do more 3F8 until it goes away. This is all very confusing stuff lol, its like starting all over again. Just when I was understanding the chemo and knew what to expect and the definitions of EVERYTHING, they throw this world of 3F8 at me. I feel like my brain can not retain anymore of this stuff lol.Ok so that's were we are treatment wise.

All together is has been a long couple of months. My grandmother went into the hospital, she was on a ventilator for a while and they didn't think she was going to make it. She's doing a little better now, they transferred her to a nursing home last week. She will not get to go back home. My mom went home when she went into the hospital because we really didn't think she was going to make it, but seeing she is more stable she is coming back this weekend. My sister Crystal was diagnosed with the worst kind of lupus this month. She was in the hospital for a while too, they couldn't figure out what was wrong with her. So last week they started her on Oral Chemotherapy. She is already loosing hair, so her and Devin can be bald buddies lol. This has just been a good year for our family. It seems like on thing after another. My poor dad one daughter with cancer the end of last year, his grandson gets cancer in May, mother goes into the hospital in Oct, and other daughter gets Lupus in Nov. Well I am staying positive, the year is almost over and next year is going to be different. I just know it lol. One day at a time....some times its one hour at a time lol.

Ok well now that i have everyone up to speed I will try to find a way to keep updating. I really need a laptop seeing we are going to be here for AT LEAST another 4 months, but we have no fundraisers in the works with all the stuff going on, not to mention we found out not everyone who wants to help us has the best intentions.So anyway we'll see what happens.

Hope all is well. Please keep Devin in your prayers. And say an extra prayer for my Grandmother and Sister. Thank you!

Melissa and Devin Deschaine