Saturday, June 5, 2010

Neglected far too long

Wow, I feel so guilty about not writing an entry in so long. The Chinese fortune I received last week told me that I needed to write a letter to someone important (There are too many important people in my life to choose from), so here you go!

Dear Friends of the Blog,
Thanks so much for checking up on Connor, I apologize for neglecting this Blog. Lately it feels that our events are un-blog worthy, but I know that the events are important to some.

Our spring weather has been full of rainy days. Everyone can blame Greg. The day after he installed our drip system it has been raining since (He must have connections).
On a positive note, I haven't had to water the yard, and this morning, the sky looks absolutely beautiful.
Connor's treatment in May was delayed. After a weeks delay he received his treatment with another dose reduction. The hope is that, the dose reduction will allow him to recover faster, to avoid future delays in treatment. We're beginning to see how his body trends during each cycle. We're learning which weeks we have the "best chance" of him feeling well, and where his blood counts will potentially be the highest (still not always high enough for many of the activities that he would like to participate in, can you say Chuck-E-Cheese germ factory??)
This cycle was unusual, his counts continued to go up while receiving his chemo medication, and didn't start to fall down until the end of week 3. He was able to go to school and visit with his friends (always a highlight in his book, and mine).
His Teacher also celebrated summer birthdays, so we were able to bring in some sugary sweet treats (sorry parents) to share with the class. As an extra bonus Connor's Chemo Pal Nick came to school to celebrate with him. I have to admit this was a little confusing for Connor. He wasn't quite sure why he was "Celebrating" his birthday, when it wasn't his birthday, but he certainly didn't display any confusion when it came to eating a cupcake.




Miss Horn's class was very successful in raising money for the Love Chloe foundation.


They had two successful Lemonade Stands, and raised enough money to purchase 7 kits. Thank you so much to all of our friends for coming out and supporting this venture. It was so nice to see familiar faces of those who mean so much to us.










The Monkey in my chair program has been so important for us. Not only does it serve as a way for Connor to feel connected to his class, it also provides a way for the class to stay involved and in touch with him while he's away.

The Big stuffed monkey sits in Connor's chair while he's away, and the class takes "Monkey Connor" to their activities. There is a "School to home" backpack that can be used for notes, drawings or cards. The package comes with a beautiful book that talks about "Why" there is a monkey in the chair, and a journal that records "Monkey Connor's" activities. Monkey Connor was VERY busy this year. He did lots of fun things as you can see:
As this school year dwindles to an end, I think it's appropriate that I say a few words about Connor's teacher this year. To put it bluntly, and in Connor's terms "Miss Horn Rocks!". There are so many unknowns in this process, but something that has been consistent has been Connor's teacher. She has been flexible, she has been compassionate, she makes him (and us) laugh, and she knows how he operates, she makes him feel successful. She has been a very important part of his (our) recovery. Not only has she been there for home tutoring, but she has also kept him connected to his class. She's gone above and beyond to incorporate health safety, acceptance for others, and compassion in her classroom. She's given these children lesson's that are not required on the state standardized tests, but life lessons that will continue to reward them forever.
Entering Connor's first grade classroom (even with some of it's craziness) provides me with a reality check in life. These children are good. They are driven, they are eager to learn. They exude life. They have the capacity to love unconditionally. There is so much opportunity there. Each one is like a little present waiting to be opened.

Memorial Day Weekend provided us with some time to get away from clinic. We were given a week off from blood checks (Greg was thrilled to be given a week off of clinic I was a little more apprehensive but I took pleasure in my husbands excitement).
Connor's choice for Memorial Day Weekend fun? Well let's see.. it couldn't be anything like lounge around and do yard work (so sorry neighbors,we'll get to it at some point), or have a BBQ in the backyard, NOPE.... He chose CAMPING! Anyone ever try to make reservations for camping the Friday of Memorial Day Weekend? Well we lucked out, found a place within a 1 1/2 hour drive to clinic (in the event we had an emergency) that had availability.


We were able to visit the Mt. St. Helens Visitor Museum, which we all thoroughly enjoyed (wasn't too crowded, and gave us an escape from the rain). I was so proud of my kid (and Greg), he sat through the whole educational video, about the history of Mt. St. Helens. He looked and read all of the exhibits, and on top of that wanted to stay to listen to the rangers presentation. He listened and even participated in the questions and answers portion. It was very informational, and quite interesting.


Unfortunately good things are sometimes cut short. Greg (I mean Connor) did not get his week off of clinic. Connor started presenting signs of anemia on Wednesday, so we headed down for a blood draw, and a blood transfusion. It took 6 hours, but on the positive side we didn't have to stay the night!
Connor has been working hard on on his Therapy. One of the best things we have done was change his Therapy to a private practice. We are SOOO PLEASED with Therapy Solutions for kids (I've added their link to this page as well). I really feel that they are the best of the best. Connor got fitted for leg braces to wear at night, to keep his Achilles tendon flexible. He thought this was pretty cool, to have something "Custom" made for him, He even got to select custom velcro straps (Flames and stars of course). It's nice to work with people who are familiar with the effects of these drugs, and who can offer proactive suggestions to limit some of the nasty side effects.
Everyone has been asking about our Summer plans. I hate to be pessimistic, but it is so difficult to plan anything during treatment. Some of the things we would LIKE to do are: Do some more camping (Connor loves it so much, even though it's wimpy camping in a tent trailer lol), spend some time at the park riding Connor's bike, and we have a weekend trip planned to the Seattle area. Other than that, we'll just be enjoying life, enjoying each other, soaking up some sun (with ample skin protection!!!!).
In the works: Connor's working on a Dinosaur movie (and I am working on finding a way to edit it, we will need to add sounds, and a voice over. If anyone has experience with this, or knows of a free online program please let me know! My High school T.V production days are a little rusty lol). We would love to have a private screening this summer (followed shortly by a down-loadable version).

Well that's about all folks. I think I've covered it all. I'll be better about future updates.

Thanks for stopping by.
Missy
P.S Extra big thanks for all the birthday wishes, cards and gifts!











1 comment:

  1. Thanks for the update!! I'm glad you found Therapy Solutions, I LOVE that place. My daughter has been there for the last 2+ years. They are wonderful people full of knowledge.

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