Tuesday, June 26, 2012

1 Year Anniversary Since Diagnosis....and 1 more intensive treatment left....

So I know it's been forever since I posted. For those not on my FB page (and not getting the mostly daily updates on Alaina), she's doing good. A fighter, like always, she is nearly through her last intensive phase of chemo before going into Maintenance chemo. Can't recall where we were the last time I posted, but she's lost her hair again, and last week was the emotionally dreaded week of "The Week She was Diagnosed Last Year" on top of....The Week My Baby Boy Turns One!

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

4 days before diagnosis...had been fighting her fever.
Wed. night, before her 106.7 fever. She was diagnosed Friday morning. Anderson was born Thursday morning.

Anderson was born Jun. 23, 2011 at 8am, 8 Ibs, 14oz and 21" long.

Alaina at Cook's. This was Sunday, the day I was released from my hospital and left to hers, and was the first time she met Anderson.

The steroids made her gain nearly 100% of her weight...this was just the first week in the hospital. We stayed for 3 weeks.

Back home from hospital...Alaina didn't walk for almost 2 months, since diagnosis, until a few weeks after we were home. It was due to: steroid joint pain, chemo joint pain, carrying lots of extra weight, and not wanting to walk in the first place. Me and my babies trying to get back to a normal routine.

 Daddy and Alaina shaved heads mid July when chunks were coming out.

October....back to her old self at Team Alaina's Light the Night Walk where we raised over $5K!

Christmastime...a visit from my dad. Anderson is 5 months.

Alaina's 3rd bday party...she spent her actual birthday in the clinic from 8-5, with a spinal tap and lots of chemo. She was a trooper though.

Averie is also such an amazing little girl to have to accept and try to understand everything going on. She makes an amazing big sister and I'll never forget the day we found out about Alaina. Chad called me (Friday, day after Anderson was born) to break the news at 4:30. We already knew from that morning it was either a leukemia or blood disease. Averie was there when he told me along with some other family members and I lost it. I couldn't breathe (literally, I'd had a cesarean and had trapped air, and it hurt horribly when I cried). She rushed to the hall outside to make me a concoction from the different juices available. By the end of the night I literally had 10 cups of mixed juice all over the room. She would do it each time I broke down. Love her, my strong big girl.

One of my favorite candid family pictures...Alaina was on steroids.

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.
The Make a Wish Gala....North Texas was celebrating it's 7,000 wish and asked Chad to document it.
Anderson had a hard time sleeping in the hospital with all the nurses and noises...this was a rare nap (during the month of Feb. stay)



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!

Hair growing back (spring time) ... getting a spinal tap here.
Losing her hair again (summer) and one of many trips home from the clinic when she's just too exhausted.

Alaina's first dance class....she'll be missing the next few due to counts, but she absolutely LOVES it.
My beautiful babies....my husband and I are so blessed to have each other and them! God is great!

I can't believe a year has gone by!

3 comments:

  1. Beautiful family, ChristaCarol! I'm so happy you're to this milestone! <3

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  2. What a year you've had. Tears in my eyes. Always praying for sweet Alaina!

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  3. Yay Alaina!! And Happy Birthday Anderson!! So much amazing stuff this summer :) shes such a big brave girl! And hugs to Avery, shes an inspiration to big sisters everywhere!

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