Friday, September 17, 2010

Smiles for Doohickey

A smile. All it took was a smile from the doctor to feel the load of our burdens lightened when Ryan and I met with Dr. Hsu to go over the latest CT scan results of Doohickey (tumor). It has shrunk significantly over the course of William's treatment---enough for the doctor to admit he was very pleased (he smiled) and not just admitting it was adequate or acceptable, but actually more than realistically anticipated. I wanted to burst into tears and savor the moment, but we quickly continued asking questions regarding ongoing treatments, time tables, surgery expectations and details, etc. The realization of this wonderful answer to prayers has come in periodic bursts throughout the past 24 hours.

Estimated size at diagnosis (June): 16cm x 16cm x 13cm
Estimated after 2 rounds of chemo (July): 10cm x 13cm
Estimated after 5 rounds of chemo (Sept): 4cm x 5cm

William's immune system is recovering and his ANC is on the rise, but he needed blood and platelets yesterday so we spent a long day at the hospital and returned home around 9 PM. I had moments while sitting in the hospital room where I got frustrated that the transfusions were taking so long due to a few minor setbacks, but then realized, "We just received the best news since this journey started. I can handle a transfusion taking a few extra hours." It's hard sometimes to take the time and stop and just reflect on the blessings we receive and the good things in our lives. I am grateful that the tumor is responding well. I am grateful that although William's weight is a constant concern, he has tolerated his chemo cycles well. He hasn't been admitted to the PICU, had uncontrollable vomiting and nausea, developed infections in his Broviac, his brothers remain healthy....

It's hard literally living day by day sometimes and not knowing what tomorrow will bring. We still don't know anymore about when surgery will happen other than it will happen in the next week or two. The stress levels of Ryan and I hit the fan this afternoon--both for different reasons and from different stressors and we had to take a step back and realign our priorities.

William got the approval from the doctor to go camping tonight with our church. Ryan was planning on taking the other boys and William was just hoping his blood counts were good enough to go. (I was hoping they were still low so I could stay home with him!) Camping with 5 little boys is near the top of my list of what causes me stress. I do not enjoy it. I do not enjoy the preparation and clean up it involves. I should love it. My husband and sons love it. I do not. Put me in a nice room by the beach and that is where you'll find a happy camper. I think it mostly stems from a lack of cooperation and help that the ages of my children currently provide for such an undertaking. My sleep is still too sacred! I remain optimistic that I will find more joy in it one day. Just not today.

Because I was so stressed over camping and a few other things going on, I broke down in tears. Ryan is way overly stressed at work right now and hates trying to juggle it with our family. He does an amazing job and I love how hard he works and tries to find balance. I know, and the boys know, that we are his number one priority. He was on the verge of tears, but I beat him to it and we don't cry together. One cries and the other comforts and then we can switch. That way we keep one semi-rational person in the situation! Thankfully, in his rational state, he announced, "Let's skip the camping part and just drive up there for dinner and the campfire and then come home!" He promised to set up a tent in our backyard at some later date. He understood that we all needed to get out of the house and the boys were already looking forward to being in the mountains, but the tent and all the junk could be left at home. Brilliant! I'm embarrassed it was so obvious. My brain was so foggy that I announced "I'm moving to Australia."

We threw jackets and a bag of goldfish crackers in the car and William's mini-marshmellow shooter that his friends made for him at cub scout camp (he was anxious to use it). They had a glorious time and came home filthy and tired. I was planning on waking them and bathing them (see, still not rational), but Lisa talked some sense into me and said, "It's still camping. Let them go to bed dirty and you'll still have loads of laundry, but you'll get clean sheets out of it!" Her mother is my laundry fairy and picks it up every few days and returns it so beautifully folded and ironed! Yes, ironed! I gave up ironing unless absolutely necessary and I've been known to use my hair flat iron on my collar and front button placket and bottom edges. It works in a pinch and you can wear it while you do it!

I'm grateful for blessings, good news, smiling doctors, reality checks, cleaning fairies, friends and family and strangers who have touched our lives and had their prayers answered on our behalf. Thank you! Thank you!


  1. Itwonderful that you and Ryan can be a refuge for one another. I', proud that I raised such a practical son! There will be other years when Ryan and Grandpa Chad and the boys can go off to the mountains and camp their hearts out--and you and I will not. But in the meantime, keep hugging one another, keep thanking one another, keep supporting one another. THAT is the best family activity you can engage in for the future of your boys. (Did I tell you about the 2nd half of the Craters of the moon trip when we scrapped the trailer episode, and came home to cook the hot dogs in the comfort of out own backyard?) Sanity and kisses beat camping and woodsmoke everytime. Even beats cleanliness most of the time.

  2. PS -help is on the way. Mitch will help pitch the tent. Hilary can help with baths and sheets. Grandpa is only about a week away from arriving too. He promises not to mention camping while he is there.

  3. I have several comments about this post, so in a very dorky fashion, I will use bullet points. :)

    * SUCH good news about The Incredible Shrinking Doohickey! Yay and hooray! :D

    * Obviously you and Ryan have an awesome awesome are both very lucky to have found such happiness, support, and love.

    * I'm with you on the camping...totally with you! I heard about this thing called "Glamping" on the news awhile back...that's more my speed. You should check it out!

    * I have never heard of or tried the ironing trick with my straightening iron, but you better believe I will file it away for a wrinkly kind of day!

    Lots of love to all of you! <3

  4. i love hearing the great news as well!!

  5. HUGE SMILES from our house!! and lots of thank you's to say in our prayers tonight. amen about the camping :) i think balboa ruined us fro life :)

  6. It's always a good thing to get a smile from Mr. Serious Dr. Hsu! That man means business! I'm so happy that you all are doing so well! We hope to see you soon!
    Kim and Tyler Armstrong

  7. Love to hear the good news!
    Moving to Australia? did you get that idea from the children's book Alexander's Terrible Horrible No Good Very Bad Day! It sounds like such a good idea but there are bad days there too!
    Today was a good news day! And for now that's all that matters!
    Love to you all!

  8. Such wonderful news about that Doohickey!! I couldn't stop smiling :)

  9. Thank you for sharing the good news. Go William!!! I love hearing how prayers are answered. Great tip on the flat iron. I agree with the no camping...and I even like to camp! But the ratio of work a mom has to do to number of kids and their ages just does not add up yet. Some day, some day. :)

  10. Such great news!!! We are smiling and jumping for joy. We continue to pray for William many times a day! (Everytime a prayer is said...)

    Jennie & Dave

  11. Oh I was so hoping you'd have good news. This is great! You guys are amazing. Keep up the good work. We're still praying for Will, by the way, I love the video. :) Every time I hear that song I'll say a little prayer for him.