Wednesday, July 1, 2009

So much to say, so little words to say it

I have never been accused of being too quiet or of not having anything to say. That said, it has been quite some time of me not having much to say on here.

I'm sorry.

We have had a seemingly endless array of a variety stress lately, and to be honest, I can't seem to organize my thoughts enough to put together a coherent post.

So, for starters, kids ...

Alannah is away at orchestra camp for two weeks. She made 3rd chair out of 13 violas in an age group where she is the youngest. She had a killer early birthday party, of the boy/girl variety, which was more than enough to give me (more) grey hairs. She will be 15 in a matter of days and eligible for a learner's driving permit, which is more than enough to give me (even more) grey hairs!

Zachary is back to competitive swimming and loving it. He is in constant motion and always looking for something to do/somewhere to be/someone to make laugh.

Mandy is good. We will be extending chemo an additional 6 weeks past the original end date and barring any complications or growth should be looking at ending this treatment at the end of September. Hopefully it is a permanent end to treatment, but we know with her neurofibromatosis that it may very well just be a break.

Her last scan was last week and was stable in both the optic glioma and the left parietal lobe lesion. We had a very scary couple of moments when after her MRI she started to run a little bit of a fever. For Mandy, due to her Malignant Hyperthermia susceptibility, any kind of post anesthesia temperature is cause for great alarm. They held her for an extra hour or so and it passed and all was well.

We hired a company to re-roof our house. Their "work" allowed it to leak, causing several thousand dollars worth of damage to the inside of our home. The fourth occasion woke Mandy in the middle of the night, when it leaked directly onto her, as she slept in her bed.


They? Were relieved from further duty.

A second company came in and did the job with no leaks.

I am tired. And in need of a vacation. And quite possibly stressed out. And tired. Did I mention tired?

All of this has led to my head being the word version of that quote, "It's too crowded so no one goes there anymore." Which has led to me not being able to finish a post, though in my incredibly weak defense, I have started several.

That's the gist of it all, in a nutshell. I promise to try to do better about posting.

Love to all~

1 comment:

Anonymous said...

Have you considered sending Mandy to American Cancer Society's ROCK Camp (Reaching Out to Cancer Kids) at Camp Boggy Creek near Orlando?

2009 R.O.C.K. Camp

The American Cancer Society’s R.O.C.K. Camp in partnership with Camp Boggy Creek serves children and teenagers ages 6-16 who are referred by pediatric oncology centers and private practices and are currently being treated for cancer or who have not been off treatment for more than three years. Full time volunteer medical staff includes resident pediatric oncologists and nursing personnel.

Florida's first and only residential camp exclusively for children with cancer offers campers an opportunity to experience the fun and adventure of summer camp without having to feel different from other kids.

Children from South Florida, Tampa and St. Petersburg will attend July 8-14.

Camp Boggy Creek is located in Eustis, Florida (approximately 40 miles northwest of Orlando).

All R.O.C.K. Campers attend free of charge. Campers are encouraged to ride the American Cancer Society's free, chartered buses.

R.O.C.K. Camp features traditional summer camp activities such as swimming, music, arts and crafts, archery, sports, fishing, talent shows, horseback riding and camp fires.


Cancer Family Weekend at Camp Boggy Creek Nov 13-15