Wednesday, March 7, 2012

Updates on Alaina and the Horrible What Ifs

We did come home finally, February 24. 3 weeks marks the longest she's been in the hospital (she was there for 18 days during Induction, the first phase of chemo with diagnosis). After a week of adjustment pains (mainly for me, hah! Living between hospital and home and only having the max of 1.5 children--Anderson only counts as half cause he's so little--was a change when I had all 3 at once!) we're finally back in the groove of normalcy. Alaina had a week off of chemo last week. She had finished her last phase of chemotherapy (the Delayed Intensification phase) while in the hospital. Her counts finally went from 10 to 104 so she got to go home. We were hoping for another week off (if she didn't make counts Monday the 5th, she'd get this week off) but I specifically prayed to God and told him his will be done regarding her treatment, and boy did he shout his will out to me! Her counts on Monday? They were a whopping over 4100! So she got her spinal and Vinecristine and low dose Methatrexate, beginning the new phase called Interim Maintenance II. It's a repeat of Interim Maintenance, but different. Interim Maintenance required a hospital stay of 4 days every other week while she got chemo (hi dose Methatrexate) over a 24-hour period intravenously. She had to stay so long because that chemo liked to stick to organs and stuff and they had to make sure all her levels reached normal so it wouldn't hurt her. In Interim maintenance II, she gets all the same chemo except that the Methatrexate is low dose, and they gradually increase it each visit (every 10 days) if she handles it okay.

Now, there is a chemo in this phase that she is deathly allergic to called PEG Asparaginase. She got it a few months ago for the first time, and 8 minutes in turned bright red all over, eyes buldged, throat closed up, lips turned purple and puffy, then skin paled, and her oxygen levels dropped to 80 before they could get her on oxygen. It all happens within minutes. She was taken by ambulance to the hospital (we get her treatments done in a clinic through Cooks) and was monitored for 24 hours afterwards. The substitute for this chemo is called Erwinia, or L-asparaginase. She had it last phase. The difference is, it takes 6 visits of Erwinia to the 1 visit of PEG to get the same effect. It's usually a M-W-F schedule at the clinic, an hour IV, and an hour wait to make sure she has no reactions. Well, guess what? She is NOW allergic to THAT.

Yesterday was her first day of Erwinia, and five minutes in, horrible white-head-looking hives sprouted up all under her chin, jawline, ears, then wrists....they gave her Benadryl and it went away but they said no more Erwinia. Of course, Chad and I were freaking out from yesterday to this morning when I got to talk to her oncologist (he wasn't there yesterday but at the hospital working). I Googled percentages of kids who were allergic to both, how this would effect her treatment, if this may result in relapse with her not getting this chemo (she was suppose to get it these 6 times, then two more rounds of 6 times in the next 4 months).

Doctor Heym, who is awesome by the way, calmed our fears this morning and said allergic reactions with asparaginase are common (though I still get the feeling based on prior conversations and reactions on his part Alaina is a bit of a rarity in all her crazy reactions to these drugs....and I remember him saying at the beginning of Erwinia most kids that can't tolerate PEG CAN tolerate Erwinia....) and that her treatment is VERY aggressive, even without the asparaginase.....he said IF she were to go into relapse (which he confirmed he was not worried about) it wouldn't be because of the lack of Erwinia in her treatment plan but because the cancer was just that aggressive and stubborn.

So, while we don't have to be living at the clinic every day (our schedule was looking at 4 days + a week depending on transfusions being needed, etc) and the doc did his best to tell us everything is okay and that her treatment will work just as effectively, I'm still a little nervous. I don't think it's because of the Erwinia, either (or lack thereof). I think it was the mention of "aggressive cancer". He'd used that term before, back when she was diagnosed as high risk. It's just scary to think of it. Aggressive cancer. Cancer that wants to take my baby.....a horrible, horrible thought process, really, and I hate letting my mind travel that dark path. But I guess it's only natural. Poor Chad and I were having a hard time last night talking about all of this. All of the "What Ifs". It isn't easy to always live day to day acting and wishing like everything were normal, and that Alaina is just a normal little 3-year-old. Cause while she IS, she isn't, and that dark shadow of "What Ifs" seems to tail her wherever she goes when chad and I watch her. What IF the cancer is aggressive? What happens if she goes into relapse? I know, I know....think positive. And I must say, most of the time, I do. But I'm allowed these few instances to worry about the What Ifs, right?

A few happy pills and a good nights rest will hopefully bring me back to my positive nature. We are so close to being done with this intensive chemo....hopefully by June (the anniversary of her diagnosis and Andersons first birthday) we'll go into what they call Maintenance. Then, she will go in once a month for chemo and antibiotics, and have oral chemo every night for 1.5 years. The good thing is, the goal is to keep her counts at a level where her immune system isn't so compromised all the time so she CAN live like a normal 3-year-old. Gymnastics, ballet, preschool....all things that are on the horizon for the fall.



To end on a happy note, I'd like to think of Alaina as Cooks new "poster child". We were asked to take some publicity pictures for their giving campaign back in January, and now she is hanging on a banner at the hospital entrance, was spotted in an Abilene newspaper, and in a magazine too. While I LOVE that my beautiful baby is all around, I and chad love even more that we can give back to Cook Children's in some way. We hope that people see those big brown chocolate drops and want to give all they can to help Cooks raise the funds they need!

8 comments:

  1. Thank you so much Christa for sharing your heart with the world! May you feel God's warmth and comfort through these challenging days ahead and rest in His presence and peace every step of the way.

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  2. I am constantly amazed by the strength of you and your family! You are entitled to your moments of questioning - it's to be expected, but you all bounce back from it all to continue the fight. Alaina is a beautiful face for Cook's campaign - they definitely caught her spirit in all those pictures. We are praying for you guys and that you all continue to have the strength to get through these trials.

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  3. I am so blessed to have such amazing people and friends in my life. <3

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  4. You are amazing. My thoughts are with you and your family and especially Alaina. She's one tough cookie.

    Lisa Brackmann

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  5. Truly, ChristaCarol — what Lisa said. I’m so glad the horrible what ifs are “what ifs.” May they STAY that way.

    You’re an amazing mom, honey. And that’s quite a kid you have, there. <3

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  6. Lisa, LynDee, I agree...she is so strong! She continues to amaze me. Thanks for your words....you too, Jenny and Amy. Love you all!

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  7. I don't know if I can add to what Lisa and LynDee have said. You are an amazing family and Alaina is made of very strong stuff indeed. She's also absolutely gorgeous. Even my son, who is not sentimental or gooshy, went 'awwwww' when he saw Alaina's banner. You are all in my thoughts. I may be an ocean away but I'm fighting this fight with you.
    xxxxxxxxxxxxxxxxxxxxxxxxxxx

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  8. She's just beautiful! I'm so sorry about her allergic reaction and I'll continue to pray that her cancer is NOT aggressive so she (and you all) can enjoy being in maintenance mode.

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