Chemo and Waffles (Week 8)

We were back at the hospital today, after I ended up driving in circles on the way there. I don't know what I was thinking, but apparently it wasn't about where I was going. Fortunately our 'out of the way' was also 'on the way' and we made it (not too late). Betsy had lots of fun art projects today. Julia made a butterfly to hang from her ceiling and a stand up house and tree.
We saw Ms. Diane (the chemo nurse guru, with like 12 initials after her name) for her physical today. Julia has had an excellent week and they are surprised how many of her side effects have eased as time goes on. Praise God for his grace in these trials and the prayers of so many. We are seeing the reality of God's protection despite our worldly understanding. My dear friend Lara said in an email after Julia's initial diagnosis that she prayed we would emerge from this fire and not be burned, not even smell like smoke (like Shadrach, Meshach, and Abednego) and Julia is a testament that that can happen!

We realized as we were talking today that Julia has crossed the threshold for her chemo med doses. I hated to bring it up, but on her treatment plan the doses are given for 1-3 yrs and 3yrs+. Julia has now crossed that line. They use an equation to compute dosing that has something to do with 'meters squared'. She and Dr. McLean 'pow-wowed' about it for awhile and decided she did indeed need a stronger dose. So today's meds went from 0.6 to 0.88. Ms. Diane said this is quite a jump (almost 50%) and was hoping for something incremental, but the doctor vetoed that. So our prayer is now that her body is prepared to handle these stronger doses. I felt I had to ask because I don't want to have any regrets or what-ifs when we reach the end of this process. We want to be confident that we did everything the best we knew how.

Ms. Diane was impressed with how well she does with the chemo process. She even helps hold all the vials and tubing in between steps. She told her she could pick a toy from the toy chest, but Julia said no thank you she just wanted a sticker. Diane told her she could have 3 and she said, "No, just one. Save the rest for the other kids." She has everyone of them wrapped around her finger.
Catching a quick bite to eat in the treatment room...

After two hours in the chemo clinic, we headed to radiation oncology for her follow up with Dr. McMullen. He was happy to see her and impressed with how well her body is handling everything. She never showed signs of skin burning and deterioration often seen with radiation. He said we need to watch her closely though because radiation causes 'cell suicide' which happens slowly and progressively over time. The side effects often occur much later. He also reiterated that she needs to have sunblock on that area at all times, everyday. We need to by stock in zinc oxide- anyone figured out how to grow it in the yard, yet?!

Then he reviewed her scan maps from her chart. They radiated her left flank. They avoided her right kidney. Her ovaries were definitely out of the field (good news!). The were able to radiate both halves of the spine to hopefully prevent any faulty growth and malalignment in the future. They were unable to tell for sure if they avoided all breast tissue- hard to determine in a toddler. She will begin preventative breast MRIs at age 25. He said we shouldn't need to see him again for now. They like to reduce the number of doctors seen whenever possible to not cause undue stress on the kids. If the oncologists see any concerns they will call him upstairs to consult. He was very thorough and easy to talk to. I really admire his approach and bedside manner. He is truly one of the best.

Here's the 'rock star look' Julia was sporting around the hospital today...

Today really made me think about what lies ahead for us and ultimately for her. Our preliminary information binder includes schedules in the back of biannual CT scans, MRIs, labs, etc. And as she gets older they add more screenings of her breasts, colon, etc. This never really ends.

We are in this weird place now. After the full-out crisis part ends, the real battle and work begins. This is the part no one has a name for and there are fuzzy expectations. Most days we feel we can handle the big things in life, its the little irritablities that leave us fumbling and overly emotional. I find myself caught off guard by my feelings at simple things and the daily stresses of life with preschoolers, a husband, and people in general. You hear people say that you have to take care of yourself first. But in reality, how do caregivers make regular time for themselves? You have the weight of the cancer you carry and all the little things of daily living, combined with the need to be ever-vigilant and attentive to the patient and their environment. In some ways living in the crisis mode is easier. This is so abstract. It all goes back to abiding in Christ and living in the moment with His strength. I do, but at times I just want to feel our old life again for just a day.

I miss our friends. I miss running around on errands and trips with the kids. I miss my brain without the thoughts of cancer. I miss a life that didn't revolve around chemo, appointments, temperatures, blood counts, and the next scan. I miss worrying at every ill feeling that I might be getting sick and become contagious. I miss my body without adrenalin and all the ways it changes your immune, circulatory, and digestive systems. I miss JuJu's curls and it makes me sad that I'm so used to her wispy baldness already. I miss going to the grocery store and planning meals. I miss life without germophobia. i miss our life before this isolation moved in. I miss simplicity. I miss spontanaiety.

I feel like I am mourning our past life, accepting our present state, and preparing myself for what comes after treatment. Right now we are battling this cancer. We are 8 weeks into 25 weeks of chemo which seems like a long time. But it will end. After September 28th we will enter the waiting period. After her treatment ends, we will wait 5 years to see if the cancer returns in her kidneys or has spread anywhere else. After 5 years, they will declare her cured and in remission. Five years is a long time.

As I mulled all this over today in the car on the ride home from the hospital, my brain was swirling with all these thoughts. Julia's DVD was over and we were almost home, so I turned on the radio. The song, Voice of Truth, by Casting Crowns was playing and I started to sing without thinking much about it. I love the way God uses songs and verses you've heard countless times before and opens your eyes and heart to a completely fresh meaning. That's what happened today with this song. As I sang the words from memory, God's truth sunk in deep...

Oh what I would do to have
The kind of strength it takes to stand before a giant
With just a sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they'd have had the strength to stand...

But the stone was just the right size
To put the giant on the ground
And the waves they don't seem so high
From on top of them looking down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me
I will choose to listen and believe the voice of truth

Cancer is the giant in our lives right now. We are facing an evil with a mind of its own. Seeing a child take on cancer is our modern day 'David and Goliath'. She doesn't need the world's armor, just the strength and protection of her God. When they changed her chemo dosage today, I hesitate for a moment about whether this was the right decision? should we have been using stronger doses sooner? what if? And hearing this song I said, no the stone was just the right size because God's timing is perfect and He is her Great Physician. The waves we are riding now and will for the coming years aren't so high when we soar on God's truth. I will choose to listen and believe. I will.

A huge praise...Matheson completed his chemo treatments today! YAY!!!! He is finished! This little David has fought his Giant. We pray that his battle is complete and he and his mom are able to return to their family soon. What a joyous homecoming that will be!

I rest in His Truth in a way I never have before in my life. We had a good night playing together. the kids have been getting along so well lately. I had time with just Carter while Julia napped and tonight after he was in bed, it was just us girls. (Billy is in PA working this week.) We played games, colored, cuddled, and of course ate waffles :) Sweet dreams JuJu, sleep well, and God bless...