update on us – March 2008
I had this started almost a week ago now, pretty sad isn’t it. By the time I get to sit down here, I just simply don’t have any energy left to give. I am forcing myself right now, or else it just won’t get done.
Jacey is doing good and is just as talkative as can be. She definitely did NOT follow in her Mommy’s footsteps, being an introvert…she is definitely her Daddy there! She is doing well in school and progressing in her reading and writing. She likes Junie B Jones books but is tackling a Goosebumps book and Charlotte’s Web over spring break. She still loves to sing and her new thing is to try to mimic an opera singer in the shower. She likes to take showers in the master bathroom, I think because it is enclosed and echoes. Right now, life is pretty calm for her with only CAMP (Christian Arts and Music program) and choir but that is soon to end. She has a speaking part in her kindergarten play which will require quite a bit of practice and then soon thereafter, she starts indoor soccer again. We’ve also recently allowed her to have internet on her computer which she is *thrilled* about. She has a blast on Webkinz World, talking to Daddy on the webcam and loves getting emails. Her webcam and email access is heavily restricted, so if you’d like to contact her, please let me know. She’d love to hear from more people but I have it set so she can only send and recieve with those in her contact list (you can never be too safe these days).
Bryan is staying busy at work and at home lately. He is currently in St. Louis for the week at an IMIS conference and is bagless. Somehow, his bag did not make his connecting flight and he still hasn’t gotten it. Poor guy has no clothes except for what he flew in and if they don’t find his bag soon, Wally World is going to become his best friend. He still works in debrief and recently tested for tech (the next rank). He is anxious to get the inside of the house finished, so he can set up *his* half of the garage and start tinkering. I foresee him being out there many hours…LOL!
As for me, I am doing pretty good. Some days are better than others but overall, my spirits are pretty high. I am still enjoying my job, although some days, it is all I can do to get home after work and lay down. I am tired a lot but not ready to give it up yet, it keeps my brain from slowing to mush and I absolutely adore the people I work with. Outside of work, I haven’t had much time for anything other than B, J and home. I recently made the difficult decision to temporarily close my photography business once I get my last few loose ends tied up. I don’t know when my good days and my bad days are going to be and until we get a treatment plan ironed out, the future is sort of a grey area. Although I have poured heart and soul into the business, surprisingly I am at peace with the decision. God and I have had some long talks and I need my energy to be focused on my family.
And the cancer…it seems weird that it now has a place in our family updates but, that is just life right now. I feel like I live in at the hospital, thank goodness that I have an awesome oncologist and nurse case manager to take care of me. On the 6th, I had my bone marrow biopsy, if you’d like to know how that went, you can read about it here. I recently got the results back and so far, they have been on the good side. The biopsy did confirm the original CLL diagnosis, B-cell to be exact, but it did also tell us that I have perfectly normal female chromosomes…good thing, since I have been a bit unsure of that for the last 28 years:-). My white blood cell count is currently at 21.4 and is staying stable which is a good sign. The cancerous cells are also diffused right now in my bone marrow (patchy, not spread throughout) which is a good sign. My cytogenetics are normal and as of now, my cancer is not transferring to acute. There is still no solid treatment plan. I have a CT scan on the 4th to check my spleen/lymph nodes and then an eval/consult up at the UAB bone marrow transplant clinic on the 9th. Hopefully, we will know a bit more after that. That being said though, if a BMT is thought to be the best answer, we would do a medical PCS to San Antonio and transplant there so I could have more family around to help.
Jacey still doesn’t know although I do know she is sensing something. She has been extremely lovey dovey to me lately and although she is an affectionate child, this much is out of the norm. We were going to tell he after we got the results from my biopsy, but I didn’t want to throw that on her and then have Bryan be gone for a week too. So, we ordered her a package from Kids Konnected and I ordered several books on the subject from Amazon. As soon as those get in and we have a chance to go over them, we are going to tell her. I really hate having to, but I am so scared that she is going to hear it somewhere else and then feel resentment because we didn’t tell her. We definitely aren’t dealing with a typical 6 year old here. Please pray, for our strength in telling her and her ability to ask questions and understand the situation.
As a family, the move to the new house was a success. We all love it and are settling in quite nicely. The inside is almost finished, I just need a few more things but nothing drastic. Jacey is thrilled that we are getting a pool and like I said, B is itching to get in that garage. Me, I like the garage too….and the garage door opener makes it doubly nice (it’s the simple things:-).
In a few weeks, we are also participating in Relay for Life. Cancer research and support have always been important to me but now is really personal. I just want to thank those that have donated so far, again…it is truly appreciated. And for those that want to, the post above tells you how. One day there will be a cure!
Anyhow, now that I made it this far it is a miracle! And hey, I actually got the photo albums updated as well…amazing! If you’d like to take a peek, you can find those here. I wish you all the best, Godspeed and goodnight!
Thanks for the update. I’m glad things are going well for you. I’m sorry you are closing your business down but I’m glad you feel at peace w/ it. Best wishes for telling Jacey. I know that can’t be easy. :::hugs:::
I am so glad to hear that you are all doing so well considering everything that you are having to deal with right now. Great big hugs. Connor would love to email with Jacey! I will set up an email account for him on my computer and send you the email address ASAP! We were going to come to Fl for Connor’s Spring Break but have decided to stay home. We have travel for almost all of Connor’s school holidays. The exceptions being Labor Day, I was not allowed to travel that close to Haleigh’s induction date and Christmas because i was adamant that we would spend Haleigh’s first Christmas at home. Plus Tim is TDY right now. Give great big hugs from us to Jacey and Bryan and tell them to give you for us! We miss ya’ll so much! Take care!
Thanks for the pictures of your new place!! Looks like it has a great sized back yard!!