So I was all over the place emotionally. It didn't help that Anderson started a fever pretty much the day Alaina started her fever last year. It got up to 104, but then went away at day 4 and he's fine....so, a bug of some sort I guess, but those days really sucked. I also looked back at pictures of his birth, getting ready for his birthday, and seeing that time of my life again just brings back all those emotions. I can't believe a year has passed. While I feel I was robbed of my first year with Anderson, and Alaina was robbed of her traditional twos, I'm blessed we're here, we're all still somewhat sane and happy, and we're a team.
The girls share a room now. The eldest is in play therapy, I think the past year is finally catching up with her. It's a lot of change for ME, a grown woman, let alone a 6-year-old (and she turns seven next month, AAAAH all my babies are getting too old). Anderson is SOOOO close to walking, Chad just finished shooting a major project at work (and now has to edit it) and is also working on a project for Make A Wish, and I am a bit behind in school (but not really, I'm doing extra classes, finished the ones I was originally scheduled for the term already...but still...)and the dog has had it with us and has attempted to run away pretty much every single day.
As for treatment, Alaina is practically zero on platelets right now, and her hemoglobin is very low, so she goes in for transfusions tomorrow. Expect us to be reclusive for a while. :) Next Monday marks the big day...THE LAST DAY OF INTENSIVE TREATMENT. Yes, we will be celebrating and inviting whoever the heck wants to come celebrate with us. It isn't THE BIG celebration (End of Treatment) but still, one to celebrate for....the year mark, and the end of these hard phases. After Monday we wait for her counts to recover, and then begin Maintenance for a year and a half. It consists of spinal taps (monthly for a while, then every 3 months), steroids (not sure when in the phase, but only 5 days worth sporadically through the 1.5 year time frame), and oral chemo every night...(on an empty stomach 2 hours before and after for 1.5 years...this should be interesting!)
A place called Pink Hearts is making Alaina wig (she expressed interest and, oh, by the way, I chopped mine off and donated to them).
As some of you (that know my writing well enough) may see, I'm just touching the surface of all of this....I've gotten deeper before, but as I stare at my Seagram's Jamaican Me Happy, I just don't think I can go any further. So I'll just do it with pictures. Love to all, Shine On, and a quick note I'll update on later:
Light the Night is Oct. 21 this year. Help Team Alaina raise funds to find a cure for blood cancer! Visit us here: http://pages.lightthenight.org/ntx/FtWorth12/CJones
|One of her many stays at the hospital. I believe she's had a total of 14 separate admissions...some were obviously more than a day stay. The longest was in February when she had a fever and her counts were nothing. A month.|
She had been indoors for 3 weeks when we (and docs) finally felt comfortable enough to let her play on the hospital playground. She was happy to see the sun. I remember clear as day the moment she walked outside after being in the hospital for the first time (at diagnosis....June 24th-July 5)....she squinted her eyes from the sun as a gust of wind hit her and she squealed and said, "Wind!! Mommy, do you feel it? WIND!"
She is one of few that doesn't cry during access. She started being "brave" end of last year. This is usually her "poke" face when they poke her chest with a needle to access her port. Her doc and I often joke about her being a patient he'll never forget thanks to her always requesting another "back poke" (spinal tap) when he is finished. That's one tough chic!