Another Chemo Monday (Week 5)

5 weeks down, 20 to go.

We took Carter with us today for what we hoped would be a quick trip and it was. After vitals, they drew her labs, but didn't wait on the counts. They said they would call us with them later. She was only getting vincristine today, so they would do it no matter what. Its a little early to see any drops from the doxirubicin anyway. Diane was happy with her progress so far. They have put her on Miralax as a precaution because her digestive track seems to be slowing. It's a problem they prefer to stay on top of because once it gets bad, its hard to reverse. We discussed her jaw pain and joint pain and they want us to keep giving her tylenol. If it doesn't relieve it, then we can give her the codeine. She did remind me though that I need to always take her temperature first because they need to know of any fever over 100 and don't want it masked by tylenol. I now carry a digital thermometer as a new accessory. It actually has a very cool round shape, maybe I should make it into a necklace?

The kids did well today. Julia was not happy when I started with the emla this morning. I honestly think she forgets about it all in between, which is such a blessing- but I hate being the one to break it to her and make her cry. The cream burns when it goes on and she stops using her arm on that side. Its just pitiful to watch. She was doing okay by the time we got in the car and Carter was good distraction. As we were making our way through the maze of parking garages, he told her, 'The person getting chemo gets to push the elevator buttons first.' It's not something I ever expected to hear my kids say and still catches me off guard.
Our appointment went pretty quickly. Diane brought each of the kids a snack while we talked and then Karen came in for chemo. Julia was not a fan today and cried through most of it. It still rips my heart out to force her to do it. It just seems so unnatural to tell your child its okay when someone is shoving a port access in their chest because its really not. It becomes a part of this weird reality you have to create to get through it all. To help them cope you have to make it seem normal. We both tell her how great she's doing and what a brave girl she is. A part of me is relieved when she resists because I don't want her to think this is normal. Its a crazy dichotomy and I just can't choose sides.

I've been singing one of my favorite songs to her, Nichole Nordeman's I AM. Carter went through a rough time when he was almost two with a terrible intestinal virus for 7 weeks that left him sickingly thin, unable to eat for weeks, dehydrated, with pneumonia, and having febrile seizures. I used to hold his limp body, both of us crying, and sing this same song. I just want them to know at their young, innocent age that God never leaves them and they will never be alone. They are so helpless to express what they are experiencing. Here is one verse...

And When I was weak unable to speak,
still I could call You by name,
and I said “Elbow healer, Superhero,
come if You can,” and You said “I am”

On our way out we ran into Jessica and little Mason (not a coincidence). He was talking today (so good to see) and was eager to show us his goody bag from his brother's first birthday party yesterday. It was very sweet. He is still struggling through and has bad burns on his face and inside his mouth from the radiation treatments. This is his last week of radiation (finally!) and everyone is hopeful that when that ends he will be able to heal some and get stronger again. He still has his feeding tube and was admitted today for inpatient chemo.

Jessica asked again if I thought our friends would pray for him. Her innocence and childlike faith just melts my heart. It is amazing to her that we have a large support network and people who pray for us. She is shocked that people really care that much. And to all of you that have reached out to help them out, she cries every time, overwhelmed by the love and generosity of strangers. God is really working in her heart and I feel privileged and humbled to have a front row seat. This week she asked if she can please come to our church when Mason feels a little better. I can't help but think, if this is the reason God allowed Julia to have cancer, its worth it (to reach out to this single mom and her 3 kids, with no friends or family nearby, going through cancer alone and tell her that God loves her and hasn't forgotten her). I am blessed to be a part of His work. I know it is no coincidence that we were the only 2 kids going through radiation together (sharing Dr. Sam) when we met.

I think of MercyMe's song Bring the Rain. Most of us know it and sing the words from memory.

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

Does anyone else cringe when they sing 'Bring me anything that brings You glory.' ? Have you ever stopped to really think about what you're requesting? Do you pray that daily? It takes a lot of courage and faith to pray those words and mean it. I can't say I specifically ask God for anything. I do pray for His will in all situations. I am not afraid to tell Him my desires or ask something, but I always pray for His will in the situation. God is the only one who knows the whole story and can see the big picture. I trust his discernment above all human reasoning and understanding. What He has for us is so much better than anything we could script. There are times He may give us what we ask for and we miss out on what He had planned for us or times like ours right now when He gives us what we never would have asked for only to flood our lives with blessing and we praise Him.

We were back home by lunchtime and the kids played happily all afternoon. It was a great rainy day in our house. Music playing, kids pretending, and mom putting things away. I love listening in on them as they pretend. They played grocery store (complete with coupons); packed up all their babies, bags, and strollers for a trip to the zoo; read books;

Here he is reading her all of his baseball books including the Phillies scrapbook. Grandpa would be happy to know that when I walked in he was telling her about the 'amazing, amazing Mike Schmidt'!
played airport; and cars. Now only in our house though, do all the cars go to the hospital and get chemo.
They check their vitals, hook them up to pulse ox monitors attached to pillows for their infusions, then wrap them in ace bandages when they're finished. Part of the new normal around here...
Julia's now resting on the couch eating her favorite meal the past few weeks- 8 mini waffles and strips of raw red pepper. I don't ask. I just make it on demand and thank God she's eating (and its actually rather healthy) We go back again next Monday for chemo again. It looks like they are going to keep us on a 'Mondays' schedule until she gets to her first 'break week' at week 11. She will also have her urine checked at the peds office this week to make sure the bactrim cleared up the infection. Then hopefully we are done with UTIs.