A Week of Ups and Downs

 July 22nd - 25th
Tuesday - Friday

The week was filled with good news, and not so good news. Not bad news, just not so good news. Let me explain, first the "not so good news". Camryn has reverted back to struggling taking her meds.   The problem isn't really the medicines such as side effects, which she has experienced very little. Camryn just struggles taking pills. She will have great days and then she will have bad days. Three times this week she vomited immediately after completing all of her doses. How is that for bad timing? I am not a doctor, nor am I mental health expert, but in my humble opinion, Camryn merely has a mental block to taking so many pills at a time, how many eleven-year-old kids would not? I get that, but this particularly eleven-year-old needs to be compliant with regards to her drug regime. Mulligans do not exist in her world of bone marrow transplants. We have been working on all sorts of solutions, short of the dastardly nasal tube, and some are working. We just need some consistency from Camryn in her ability to comply with taking her meds when she is supposed to take them. However, Camryn has more good days than bad days, which certainly is a positive.

Now for the good news. All Camryn's blood work continues to look good. The Tuesday / Friday blood draws provide insight into Camryn's progressing immune system. Next Friday will be a very important day for Camryn. She will undergo her fourth bone marrow biopsy; the first post transplant. Even though Camryn is sedated during the procedure, it is surgery and she will be in pain for about 3 days after the biopsy. This particular biopsy will provide the first "real" look at the transplanted marrow, including how effectively Morgan's marrow is taking over the job of rebuilding Camryn's immune system. We know it's functioning, not fully, but it there. In prior blog posts, I have mentioned Camryn' warts. For those of you who have never seen them, allow me to explain. The warts on her fingers, hands, toes, and soles of her feet are extensive. She has had fingers nearly completely covered in warts, which has affected her ability to hold a pencil the proper way. Holding a pencil to write is painful for Camryn. So she adjusted her griping style in the same manner as a 3 or 4 year child grips a pencil, or a crayon. That is how Camryn writes and has written all through school. Now, back to my comments regarding the good news. Many of Camryn's warts are disappearing. They are drying up and falling off. The sole of her right foot had so many warts that over the years, they had been "flattened"from walking and the bottom of her foot looked like one huge flat wart covering the entire sole of her foot. Today, Saturday, as I type this blog, the lower 2/3rds of her foot has no warts. The only warts that remain are a few on the toes and some on the ball of her foot; that is it. Camryn had finger nails completely covered by wart overgrowth on her fingers. You can now see every fingernail, full fingernails without warts covering them. One can only imagine what this transformation, so far,  has meant to Carmryn as She has had to manage the social stigma of having visible warts, hundreds of them, since she was four years old. Mentally, she has become one tough kid, privately managing very difficult situations, especially at school and other public areas. Camryn has been blessed to have great teachers at school who have helped her to manage things and have been supportive when she not needed intervention. Results like this, is what we had hoped for. We hope that all those pesky little critter warts just keep dropping off her fingers, toes, and feet. Camryn received her "new" face last summer with the laser surgery to remove those warts. Maybe this summer she gets "new" fingers, toes, and feet. I think a wart "permanently going away party" would be an appropriate celebration for Camryn months down the road with the continuation of these stunning early results. Victories like these, make all the struggles with taking pills worth the effort, essentially a two hour ordeal, every morning and very night. One battle at a time, one battle at a time...

Camryn and Jaime Shae

Camryn and Morgan

Just Camryn

 Camryn insisted that these pictures be taken with only a headband on her head; no beanie or bandanna to cover her fuzzy bald head. In her own words, "this is who I am".