Friday, July 16, 2010

REMISSION and kidney stones

To be honest, I have been putting off writing in this blog, but then I realized that there are people waiting to hear how our Gideon is doing. I say "our" Gideon, because this boy's soul is more powerful than any nuclear power plant out there (only he creates completely reusable power that only kicks out smiles as its sole byproduct) and it would be selfish of me to monopolize this priceless energy source. The world needs to tap in.

I kind of needed to shut off the world yesterday...and part of today, to be honest. I wanted no one to look at me or talk to me or even smile at me (besides my boys). This was sleep deprivation at its finest. That doesn't sound right. This was sleep deprivation at its ugliest. The night before Gideon's spinal was BEAUTIFUL for him -- prayers were answered. He woke up and asked for food at 12:07 am, but I explained he couldn't have anymore since he was getting sleepy medicine in the morning. I told him Dr. Lobel didn't want him to get sick and that he could eat as soon as his sleepy medicine was over. Gideon ADORES Dr. Lobel. He respects that man more than Santa. So, he rolled over and went to sleep - for the night. Miracle? Yup. The only problem was that he complained that he was going to puke, so I sat with one eye open all night with the puke bucket in my hand. This added to the sleepiness for me, but I am over the moon since Gideon had such an easy night without screaming and food cravings left unfulfilled. It could have gotten ugly, but it didn't!

Thursday marked Day 29 in the treatment process. Gideon had his spinal tap, chemo, and marrow extraction. He came out of "Twilight" happily and without trying to take out nurses. All involved remained bruise-less. Some of his marrow was sent to John Hopkins for the MRD testing. This stands for "Minimal Residual Disease" and it means that there are traces of cancer still remaining within a patient, even though all other tests show remission. The result of this test could change the trajectory of Gideon's treatment. We will find out these results next week when Tom and I have our one-on-one meeting with Dr. Lobel. He will also explain the next phase of chemotherapy (including new medicine). Thankfully, when the steroid is needed it will only be needed in spurts of a few days instead of twice a day for 29 days. We got through that leg of the journey. Can I get a sigh of relief? .....................

After the chemo and everything, I was seeing double and feeling a little paranoid about life. Enter Ann Thornton. She swept in and told me it was okay to go off on her if I needed to. I did. I went off and I prefaced everything I said with "I know I'm being irrational, but..." She listened and didn't try to talk me out of my craziness. Do you know how refreshing it is to be heard and not judged? Once I got it all out of my system, my heart felt like it shed its crusty layer of blah-ness. Oh. To have the freedom to molt in front of friends and still feel the love through that less than pretty experience. I am beyond lucky to have real friends. Thank you, Ann.

Last night was one of those silly putty nights sans the fun...It was just a mass of minutes being pulled thin but not breaking. Over and over the strands kept getting tugged, and a nervous ball of clay string remained. Gideon tossed and turned and moaned throughout the night. His body was shaking. He cried a lot, and when he was sleeping, the whimpering continued. Throughout this entire chemotherapy and cancer bout, Gideon has not had ONE accident. This includes the days he had ExLax! This is impressive for such a little guy. He made it to the toilet every time -- every explosive episode ended on the porcelain throne. Last night, through the tossing and turning and pain, Gideon wet through everything three times. The saddest part of all of this was how disappointed he was with himself. "I still a big boy, right mommy?" He asked me again and again with tears swelling in those baby blues. Something was wrong (besides the fact that my three year old has cancer, I mean).

Before we get to that: It seems as though this new world we've landed in has low-lows immediately followed by high-highs. There is no la-la-la middle. Not yet, anyway. I have never in my life felt bored, but I would adore that lazy feeling again. Anyway, after this heart quaking night, we got the call from Dr. Lobel that set off fireworks of jubilation: Gideon is in remission! M1 was attained since there were 5% or fewer leukemic cells in the marrow. PRAISE! Isn't that fabulous news? This means that we are going to wait on that MRD test for more information, but we are going to trudge forward in completely beating this disease. Many people have asked me since he is in remission, doesn't that mean that we can stop chemotherapy? The answer is no. New Leukemia cells would still be produced if we stopped the treatment now. But that doesn't stop us from celebrating this fabulous news! Gideon's next spinal chemotherapy is next Friday, and that marks the beginning of the next phase.

Today Gideon laid low and only wanted to rest. Watching him struggle to steady his hand enough to put his pancake in his mouth made me want to squeeze him. I wanted to take the shake out of him and into me. I wanted to soak it out of him so that I could be his buffer, and the stillness of calm would be all that remained. Gideon complained of his head hurting and every single joint, as well. He can hardly stand without collapsing. This is when the Wonderwoman gene is supposed to circulate through my system, but it was slower to arrive today. Gideon ended up with a fever. I took him into the Clinic and explained his bed wetting night, his aversion to the bathroom today, his body aches, his shaking... all of it. Come to find out, there was blood in Gideon's urine and a possible virus on top of that. So, prayers are needed once again. We were told that it most likely a kidney stone produced during the steroid infestation. Did I mention that I loathe steroids? Yes? Well, they are even more despicable to me now. Although, they are beyond important in the whole treatment process, and I hate cancer more.

So, please pray for an easy passing of this stone. I am pumping him full of fluid by telling him that the good fishies need more water to swim in inside of his body.

Miracles are still happening, and I will forever focus on those (even when it gets tough to do so). I am thankful for YOU since you are going through the journey with me.

P.S. Some people have asked how they can read old posts. Do do that, click on "June" on the right. All of my first posts are there.


  1. Thanks for updating, even though I am sure you don't always feel like it. I am praying for your specific requests and especially that Gideon stays free of infection and pain. I hope you get some rest. Will he let your Husband get up with him on the weekends so you can sleep or do you have trouble being a mom where you have to b there? Cause I have that problem. But you need sleep so you stay healthy! - Erika Fiedler

  2. Stone = more than not fair!

    I was so struck by the recent photos of your little man. I hope that a little time off the evil (OK, helpful) steroids will help bring him back to looking like his own self, despite how adorable those pudgy cheeks seem.

    God has been so good to all of (the rest of) us through your ordeal - learning and confidence and hope! I hope that you and the boys and Tom can FEEL that the way we all do. Praise the Lord!

  3. Amanda, May God Bless you with the Faith & Courage to meet the challenge of each new day. <3

    Thank your for this blog, although it is understandable that there are time, probably more often than not, when you do not feel like writing. It is understandable that there are time where you feel week and like this is never ending, but look at what prayers and God has done so far! As always you inspire me in so many ways. I wish I knew what I could do to help you or to make things even a little "easier"! I am so glad you have a friend like Ann, who is there for you, no matter what and knows what it is you need, whether it is time away or time to be irrational!

  4. Thanks for updating us Amanda, it is much appreciated. There are a lot of us out here praying and we will continue to do so.

    Chris Kuthe

  5. Derek Roehl (Western Hockey)July 27, 2010 at 11:53 PM

    Good to hear that he is fighting this off and being a warrior! Us hockey guys are still thinking of you and praying everyday!