28 August 2008

Miss Malia ~ An Update ~

Hello Everyone!

We received an update today from Miss Malias parents ~ I have pasted it here:

Things are progressing – we’re having another good week (outside of the common issues – a little nausea, risk of infection, etc.). Malia had a routine visit at the clinic today with vitals, weight, exam, CBC (complete blood count to determine ANC which is the ability to fight infections), and Vincristin push (chemo). Her weight is slowly climbing – today’s visit brought a number just over 38 lbs. so she’s getting really close to her original weight. Her blood work looked great (no need for a blood transfusionJ) and her ANC was good (but we still need to give her the daily Neupogen shot through Sunday). She’s in great spirits (outside of the shot and port access/de-access L) and seems to be showing more curiosity and is asking more questions.

I just made a connection with a mother of another little girl in Washington who was also diagnosed with Hepatoblastoma earlier this year – she just finished her chemotherapy and is doing very well. Her name is Ashley Ann Nakata and is just a cutie pie. You can read her story at
www.ashleyannnakata.blogspot.com. There are some things about her story that just completely mirrors ours whether it be similar occurrences, timelines, or emotions…it simply sounds like us. Anyway, Kyle and I read her story and looked at her pictures with Malia. There’s one picture of Ashley in the bath tub with a great shot of her resection scar. When we explained to Malia that Ashley was going through the same thing she was and had the same “line” as Malia…just a curvy one instead of a straight one, Malia just wanted to keep going back to that picture. I think she finally started feeling a little less alone with this whole mess which just makes me so happy but at the same time brings tears to my eyes as I write this. She knows that we are here with her and that we are effected by all of this too but she is the only one getting chemo, she is the only one that has a tube in her nose, she is the only one that vomits, she is the only one that had to get “cleaned out”, she is the only one that has to get a shot every day (by her parents, nonetheless), she is the only one with the line across her tummy…until she saw the picture of Ashley.

So she asked me why she had the tummy aches and I told her that she had a tumor which was like a big ball in her tummy. I told her that the tumor grew in her tummy because of Cancer and that both her grandpas (Grandpa Hight and Grandpa Pettus) had cancer as well but just in their neck and not in their tummy. I explained that the cancer chose her because she was special and that it must have just thought that her body looked really comfortable to live in but we’ve kicked it out and said go live under a rock somewhere else…”you’re not welcome here”. So she seemed to understand that and was satisfied. She even joked around saying that the cancer said “…hey, I want to play…” and we said “no way Jose, go somewhere else!” J. I just wish I had a video of that because the animation on her face was just heartwarming.

So here’s another relieving tidbit: I asked the Dr. at the clinic today about Malia’s AFP (Alpha Feta Protein which is a certain type of protein which is abnormally high in tumor patients). In general, the higher the AFP level in patients with cancer, the bigger the tumor. AFP decreases when your body responds to anti-cancer therapy. The normal amount (number) of AFP in a healthy body is about 5, in the beginning of all this Malia’s level was over 300,000. They did an AFP test on her blood on the 18th, which was the morning of the day we started her 2nd round of chemo and it came back at 1,608! YIPEE!! He said we should continue to see it decline over the next few months.

On that note, I’ll say thank you again to everyone for your continued love, support, and encouragement. We have so many cards saved – when this is all over I will be making a big scrapbook for Malia and everyone’s cards, kids’ drawings, special notes and postcards, and pictures, will be in there for her to have forever. We will keep you all posted (hopefully more of the same on a weekly basis) – but isn’t there a common saying about “no news is good news” or something like that?

Well anyway, that’s what I’m running with. Love to you all.

Thanks to all of you for your prayers and cards ~ things are really looking positive at this point for Maila ~ Thank GOD!

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