Saturday, December 1, 2012

To Salt Lake...again

We got through Thanksgiving.  Austin was miserable after his chemo on Wednesday.  He had nausea and vomiting as well as back and joint pain for two days.  I had to work on Thanksgiving day but Kevin cooked a wonderful meal and we celebrated as best as we could.  Austin also got his first mouth sore this week which I know is inevitable, but still hard to see.  His ANC this week was surprisingly awesome, above 3000 so we headed back up to Primary Children's for another lumbar puncture.  The visit went well and Austin received the Methotrexate in his spine as well as the Methotrexate and Vincristine in his port.  I discussed Austin's vomiting issues with the Oncologist and she increased the dose of Zofran in the hopes that things will be better this time around.

43.3 Kilos this week--down a bit.  He has been steadily losing
since the huge weight gain from the steroids in September.
Dang that blood pressure cuff

Playing around waiting for the doctor.  Lots of energy this week.

Getting labs drawn

With Tricia--she coordinates our treatment in St George.  We love her!

We got a visit from Elliot the therapy dog.  He is always a big hit.

With Dr. Eldridge--she is the doctor that we see most of the time.

Waking up after being sedated for his lumbar puncture.
 Austin says he loves the "sleepy medicine".

Getting Chemo in his port

Playing around with the wheelchair

On the way home--Austin picked out this hat from the Clinic's hat tree

I am glad Austin is doing well.  I have had an emotional week.  His cub scout leader called and asked if he could call us up in pack meeting and have me talk about Leukemia and what Austin is dealing with and then they wanted to give Austin a "cheer"(the cub scouts have silly cheers that they give the boys when they get their awards).  I struggle with this kind of thing because I know these people mean well but I don't want Austin labeled as "that kid with cancer" and treated differently than others.  And a cheer?  Really?  How about: "ra ra ra, Cancer sucks!"  Ok, I was over reacting.  I decided to let Austin decide if we should do it and of course he said yes.  I was uncomfortable but Austin soaked up the attention and it turned out fine.  Kevin handed out the orange team Austin wristbands to the scouts and I gritted my teeth through the cheer.  

We went to our Ward Christmas party tonight and as I sat there in the middle of all those people, I realized that I couldn't relate to any of them.  When any of them would talk to us it was to ask how Austin is doing followed by an awkward moment when they don't know what else to say.  I know they are just being polite.  I know they can't understand how I can't sleep at night because I torture myself with worst case scenarios or that I cry with Austin every time he throws up and he says "Mom, I hate cancer".   I feel horrible that he has to be poked over and over.  I hate watching the poisonous Chemotherapy drips into his veins in the hopes that it will save his life.  So when someone says, "how are you?"  What can I say?  I settle for, "we are hanging in there", or "doing ok".  I know it's not true, and they know it's not true, but neither of us knows what else to say.  I know I am evil, but if one more person says to me, "you are in our thoughts and prayers"...I just might scream.

Ok, that's my rant for the night.  I almost deleted all that, but then I decided that in some crazy way it is therapeutic for me to express the negative thoughts.  I truly am grateful for all the people that care about us and want to help.  I really am grateful for all the thoughts and prayers.   I guess I need to learn a lot more about humility.  


  1. I know you don't think so, but we are all humbled by your strength and courage!! This isn't easy and it isn't fair!! Love to all of you!

  2. It is beyond inspiring how positive he has been through all of this. Every picture I see, no matter what is going on he is smiling. It makes me think twice before having a negative attitude about the trivial things that I have to deal with on a daily basis. Please let Austin know that I miss him and that he's in my prayers, and that he's an inspiration to me all the way in Korea!

  3. I do understand where you are coming from a little bit. Jake isn't my child. He isn't sick. But Jake has a cane that tells people something is wrong. People tell me I am amazing. (What else am I going to do?) People ask how we are with that same awkwardness. I actually told a lady, "Well, one thing you won't hear me say is 'he's doing better!'". I cheer for you and Austin (and Kevin) for facing it like you do, through gritted teeth. I cheer for the fight you are participating in. Life happens and you make the best of what you can. For that I am cheering. We have had that talk with our kids about Austin and cancer and how he isn't different. I can understand them wanting to face it and not make you feel like they don't care or are ignoring it all.

    Yes, vent. Get it off your chest. You will be swallowed up in grief and the rocks on your chest will suffocate you in what you want to say but don't.

    We love you and are here for you to yell, cry, celebrate, anything. YOU AREN'T ALONE even if I can't fully comprehend what you are going through. WE LOVE YOU!

  4. Thanks everyone. Zakk, you are an inspiration to us! Austin always talks about you when I ask him what he wants to be some day. Doris, Austin is the courageous one. He teaches me every day about bravery. Sarah, I think you can understand very well how I feel. Like you said, life happens and you just have to make the best of it. And by the way, I think you would be amazing even if Jake didn't use a cane!