Brunch-Time Talk of Little Brothers and Blood Cancer

By - August 23, 2013

Ladies an gents, it's been a big day so far, but we couldn't continue it without hearing from someone this day is for, in part.  I told you earlier this event was inspired by a character named after a writer friend's daughter who was diagnosed with leukemia at age two and a half.  For that reason, I've asked Christa Carol, Alaina's mother, to share Alaina's story with you all.  Don't forget to check out the end of this post for details on entering to win a special giveaway. And, as usual...

Now, please welcome Christa Carol Jones.  She asked me if her post was "too long," but I told her I thought today, any length post she had would be completely okay with everyone. After all, this is what today is all about.  Take it away, Christa Carol!

Hello blog-a-thoners! Man, have there been some amazing authors on here all day. Such a cool event! I want to thank Colby for doing this event in honor of my daughter, Alaina, and all those others fighting the fight against blood cancer…and of course, for naming one of her characters after her, how cool is that! Alaina will learn to appreciate this when she’s older, for sure! By the way, I’m ChristaCarol, her mama!Nice to “meet” you all.

So, I’m here to talk about our journey and Alaina’s story, which is actually something I haven’t done in a while now. The shock and struggle of it all has subsided into a type of normalcy, and Alaina actually completes her 2 ½ year treatment October 14^th of this year! It’s funny how us humans eventually adapt to whatever is thrown our way…I suppose some better than others. My daughter is a testament to this.

I suppose we will begin where most people end up always questioning me….how did it all start? “How did you know she needed to be seen?” It all started in June of 2011. All these little things, that we did not realize were connected until after her diagnosis, had been happening. The night sweats and terrors began two weeks before diagnosis. We thought it was just a two-year-old thing/stage, and would eventually pass. Then there were all the bruises, within that same 2-week time period. Again, she was/is a very active child, and was two at the time, so for those of you that have or have had little ones, totally know where I’m coming from….those 2-year-olds are NUTS! She was a mini-stunt girl. But then the fever came, June 17^th. It stayed at 103.6 for four days. I knew from experience with my older child on the fourth day, I needed to have her seen. Tylenol would make the fever go down, but it always came back. Monday, before her Tuesday doc appointment, we were swimming at my mom’s. She was shivering (couldn’t keep her body temperature up, her hemoglobin was dropping…we of course had no idea at the time), and her lips were purple, and it was near 100 degrees outside. The doc on Tuesday said to wait another few days, that it was more than likely a fever virus (my eldest had the same thing at 3 ½, same exact fever of 103.6, went through a bone scan and everything, and whatever it was went away on its own so I suppose they were thinking genetics??). Regardless, we don’t see that doc anymore. And I should’ve known to demand a blood test, but that’s all hindsight.

We went in Thursday early morning to have my son (oh yeah, I was pregnant by the way), and my mom stayed with the girls to watch them and take Alaina to her checkup since she still maintained a fever. They insisted on a UTI test first, and then finally a blood check. Thursday night, while I was still in the hospital with new baby, Alaina’s fever spiked to 106.7. My mom alternated Tylenol and ibuprofen through the night, and that morning my husband Chad and her were called by the doc and told to go straight to Cook’s ER. They were told her blood results came back, and she either had leukemia, or a blood disease. Chad called me at the hospital and told me around 9:30 a.m. I remember being in my hospital bed crying and praying, but I had no idea what to pray for….I was miserable not being there for her, but she has a great daddy and he stayed by her side the whole time.

At the hospital, her veins were too small to get an IV in (everything in her body was depleting), so her awesome oncologist inserted one through her hand. Of course, she was not a very willing patient during any of this. She hit, kicked, bit, scream, you name it. She’s always been my feisty one. And even when she was feeling miserable, she fought. The doc said in order to see if it was leukemia or a blood disease, they had to do a bone marrow aspirate (a giant needle going into your hip bone to draw out the bone marrow). Her hemoglobin, platelets, and everything were too low to put her under anesthesia, so they had to do it with just lidocaine on her hip. My baby was fully awake
 when they inserted the giant needle into her bone marrow. Two or three nurses held her down, Chad was there with her, a child life lady was trying to let her watch a movie on an ipad to distract her, while the doc worked speedy quick. My mother-in-law was in there, too. Alaina was 2 ½ so was still in need of translation many times with people and her speech (I always understood her, but anyone else struggled sometimes). Chad says she screamed at the top of her lungs in perfect speech, “Get me outta here!”

I got the call at 4:30 p.m. that day. I was fortunate my sisters and mom were there visiting, but unfortunately, so was my eldest daughter. She was about to be 6. I lost it. Hyperventilating, and cramping so bad I thought I would die from self-imposed suffocation because I couldn’t take a breath without the feeling of my side ripping in half (I’d had a cesarean, and apparently had some trapped air bubbles…good times!), my almost six-year-old kept it together and went to make me drink concoctions from the juice available in the hall of the maternity hospital wing. My brave girl.Meanwhile, Alaina had surgery to implant her medi-port in her chest, and her first spinal tap. I did not get to see her until Sunday, when I was released from my hospital.

Here is an excerpt from the Tuesday after her diagnosis when I announce it on my blog:

“It's a little after 4a.m. and I've just finished nursing baby Anderson. He's such a gift from God. We truly are blessed to have such a sweet, angelic little baby boy. This is my first night home since we left for the hospital to have him last Thursday morning. I thought it would be good to be home, that it would make me feel better. Some who were once subscribed to this blog when I compassionately pursued writing may not know that on Friday, June 24th, my youngest daughter Alaina, who is 2 1/2 years-old, was diagnosed with ALL leukemia. She had been running a fever of over 103 for 6 days. Because of the fever she was not able to see her baby brother on Thursday, and after urine and blood tests were done late Thursday, Friday turned our world upside down when we received the news. I was unable to see my baby girl until released from the hospital. My amazing husband stayed with her, along with my mother-in-law and mom, who alternated shifts to be with the confused, scared little girl as they admitted her into the children's hospital, ran a bone marrow test and spinal tap on her, and poked and prodded her throughout the weekend. Finally, on Sunday late afternoon, I got to see my baby girl. And she was NOT happy to see me.

No one prepared me for how steroids change a little girl's personality. I knew she was angry at me. She didn't understand why I'd been gone while all these strange things were happening to her and it broke my heart. It still does, typing it, I have to really hang onto my composure. I had a cesarean, and crying really hurts. She kicked at me, bit me, pinched me, screamed with tears rolling down her cheeks.

Thursday was one of the best days of my life, Friday the absolute worst, and Sunday the second-to-worst. But Monday brought me new strength. She finally got around to sometimes accepting me again. Her personality is still so different because of the steroids. She is unable to make decisions. Everything is always "no". She has massive fits when she wakes up, or when a stranger comes into the room. My sweet, precious, outgoing little spitfire is hidden somewhere beneath this new little girl. I know she can't help it. I know she's scared and confused and doesn't understand. And it kills me.”

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It was a hard time. Not to mention, my son was having to be brought along through it all. God knows, though, and made him perfectly capable to do so…such an easy going baby was he! Not so much as a toddler now, hah! The following months were the most difficult in my life, and hopefully, the most difficult in Alaina’s. We lived in the hospital for 3 weeks before finally being released, with her immune system just above 100 ANC (actual neutrafil count….neutrafils=soldier cells against bacteria/virus/infection)…a normal persons is typically around 2500-3000. She was at 100, but had been at 0 since diagnosis. We were only home for a short while before being admitted again because of massive pain in her leg.

On a side note, she did not walk for 2 ½ months…the steroids had caused her to gain 100% of her weight…she had once been 27 Ibs and was around or a little over 50 Ibs in the end of July.

Her leg pain was due to fluid in her hip joint. They couldn’t determine if it was infected or not so they went ahead and did surgery. So that made two surgeries for little Alaina in a period of 2-3 months, on top of numerous spinal taps, infusions, transfusions, and chemotherapies. She had numerous other visits to the hospital due to allergic reactions, one that almost ended her life (anaphylaxis to a chemo that was integral to her treatment….they had one substitute for that chemo, and on the second treatment with that chemo she had another, milder reaction…so they cut it out of her treatment plan), fevers/infections, and another stay that outlasted our first stay…the entire month of February, 2012, we were living in the hospital due to an infection and her counts (ANC/immune system) being zero.

To make this long story a bit shorter, I’ll say that that first year was the hardest in her treatment. She was going to clinic 4 days a week, getting a
spinal tap once a week, and chemo those 4 days. Her hair started coming out in clumps, so we shaved it. It completely went smooth after Christmas. She went from chunky steroid girl, to skinny, frail chemo patient. We were so fortunate that she handled her treatments well. I’ve read stories and met others at clinic whose children did not handle chemo very well. Alaina only threw up a few times out of the hundreds of treatments she’s had these past two years. We always keep her medicated right before treatment, right after treatment and later on in the day to keep her comfortable.

She celebrated her 3^rd birthday in clinic to get a spinal tap…was there from 8-5….but needless to say, our girl is a fighter! And she did her first Light the Night Walk (hosted by the Leukemia & Lymphoma Society, in which this blog-a-thon will be benefiting) Oct. 2012, and raised over $5K!!! That’s huge for a non-corporate team. Last year we did well again, raising around $3K! All this money goes to continued research for blood cancer patients like Alaina, and adults as well. It goes to supporting families financially in some aspects, and providing counseling and communities for families to talk when they are dealing with this tough challenge. You are making such a difference in those lives, Alaina’s life, and our lives! Your contribution, no matter how big or small, makes a difference.

Today, Alaina is four-and-a-half, was granted her wish by Make a Wish and got to go on a Disney Cruise and meet all her favorite princesses, has a head full of thick, curly hair, can’t wait for Oct. 14, so that on Oct. 15 she can finally get her ears pierced….still takes steroids 5 days at the beginning of the month so maintains her alter-ego that we’ve named “Steroid Girl” on a monthly basis, loves playing princess dress up, miniature Disney princess dolls, Barbies, coloring, and bullying her two-year-old brother, and is now considered a SURVIVOR of Acute Lymphoblastic Leukemia. If all goes well from here, in June of 2016 (I think) she will be considered CURED.

Now, I was obviously a writer before all of this happened, which is how Colby and I know each other. In honor of this day, and of Colby’s awesome new release, I am also having my book MagicBound on Amazon for free all day during this 24-hour blog-a-thon.

Colby, thank you for honoring my daughter and naming one of your characters after her and having her win the fight! And thanks for hosting such an amazing event that truly helps people like Alaina. Go Team Alaina!

ABOUT CHRISTA CAROL:  ChristaCarol is an avid daydreamer, wife to her best friend, mom to three amazing kidlets, a teacher-in-training, and an author who loves fantasy, adventure, romance, and strong leading ladies.  She’s acted, danced, sings in a praise band, sews, is learning to knit, and loves movies just as much as books. She will try anything the least bit creative at least once!

Christa Carol’s debut book, Magicbound, about a teen mage fighting against her dark magic, was released June 30, 2013 on Amazon.com. Her author blog will be full of updates on current projects, contests, random writing tidbits, and possibly other random things she feels belongs in the author section. You can find ChristaCarol’s author page on Goodreads and Amazon. Find out more at www.christacarol.com.

 

With An Additional Giveaway From

COLBY MARSHALL

 

***One lucky commenter on this post will win a The Trade prize pack from Colby Marshall that includes a signed copy of The Trade, a The Trade puzzle, and a colbymarshall.com T-shirt! So, be sure to comment!*** 

 

Comment for your chance to win Colby's giveaway-leave an e-mail address for contact in case you win!

What about you- has cancer touched your life or the life of someone you know?