Sunday, January 20, 2013

Well, we're pressing on

Life just keeps going. We haven't had too much to update. I guess in normal life a blood transfusion would be a big deal, but this week was rather quiet. On the other hand, just one blood transfusion is pretty good for 30 days post transplant.

Rourke at Esther's blood transfusion
Overall, Esther is feeling pretty good. Last week she was struggling with some pretty strong stomach pain. At this age is very difficult to discern the reasons for the it her gut waking up, remnants of mucousitis, reflux, problems with IV nutrition, the result of taking a bunch of medicine on an empty stomach? She was crying a lot in her sleep throughout the night, so at our appointment on Friday the PA wanted to see if changing up her IV nutrition would help the stomach pain. Friday and Saturday night Esther received fluids through her IV rather than the comprehensive nutrition. This helped, she didn't cry either night!
Sleeping with her Huggable Hope Doll
She has been eating a little, a very little. She throws up pretty easily as her gag reflex is extremely sensitive, so little bits of food at a time are working. We are needing some discernment as to how much to give in to her requests, we could be breeding a very picky eater. She would be happy to only eat spiral macaroni and cheese from Target. All the work we did with our babies to teach them to eat what they are given may be a bit harder with a four year old...oh well.
Enjoying Spiral Mac & Cheese with Zinnia
The kids have been enjoying their turns at Brent's Place. Rourke went home on Monday, Lydia & Frannie spent the week, and Zinnia came on Friday. I went home for a night and am back for a couple days, Margarita had the great suggestion for both of us to stay. Tonight my mom is coming to hang with the little girls so Anthony and I can have a date! Yippee! Zinnia and I will go back home Monday and Rourke gets to spend the week with Anthony. Are you ready for your test of who is where now?
Frannie had NO problem being loud enough to call the BINGO numbers.
This next week brings Esther's first week of radiation. Her abdomen is marked with radiation stickers so the doctors can aim the beams in the right location. Because she'll have to lay perfectly still, she will be sedated for each treatment. The actual treatment is only a few minutes. This portion of her treatment is at University Hospital in the adult radiation clinic, right next door to Children's.
I am still operating in a fog. I did some school with Lydia and Frannie this week, we even did a project with Rourke via FaceTime. It felt good to do something "normal." We aren't attending Classical Conversations for at least the first six weeks. Given the intensity of the cold and flu season, and the high number of cases of whooping cough, the doctors thought it would be best to not attend. Not only does Esther have a general inability to fight infection, any immunization she received prior to her transplant is gone. Also, if we did send our kids, they would then not be able to come to Brent's place. The kids are disappointed, but understand it's really the best choice right now. They thought I did a pretty good job last week, so I think we'll make it.
Cancer is a long road for anyone. This week we learned my dad will need an additional three months of chemo and we also have been praying for a family we've met along this road. Collin is a 6 year old who is 10 days post transplant. Anthony and his dad, Tim, have a mutual friend. This week, Collin's mom, Suzanne, had surgery to remove a large mass that is likely cancerous. They are waiting on the pathology, but the doctors were not very positive regarding the tumor. Pray it would be benign, and for Tim as he must be torn between caring for his wife and his son, both in hospitals, in different cities. Pray for Suzanne, for her recovery, for their infant son, only a few months old, and for Collin's other two siblings. I have been brokenhearted that she is not able to care for her son although she knows he is suffering.
I've always been comforted by Habbakuk 3:17-19
17 Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls,
18 yet I will rejoice in the LORD; I will take joy in the God of my salvation.
19 GOD, the Lord, is my strength; he makes my feet like the deer's; he makes me tread on my high places.
In these verses everything is doesn't just seem bad, it is bad. But it's not forever. Joy is not always vibrant and bubbly, sometimes it's a muted choice or hope in a promised future. I think joy can fluctuate, but God IS. He is our strength, He makes our feet steady in steep, rocky paths, and when we slip, we will recovery quickly.
One thing I am incredibly thankful for is that the darkness of cancer, of hardship in general, makes it easier to take joy in the little things. We don't need some big, major change to bring us joy, sometimes all we need is a sparkly shirt and tutu.


  1. Aw Sam, we love you guys. There is such evidence of our amazing God in every step of your journey. I've been praying that you would find rest in God and praying for your other four kiddos as well. "My soul finds rest in God alone." Psalm 62:1

  2. Your stories are humbling and encouraging. Thank you.

  3. Sylvia Joy, RN MSN NP-CJanuary 23, 2013 at 12:11 PM

    Continuing to pray for Esther!!! She's precious!! Yes, cancer is so horrible... Part of our living in a fallen world- I HATE cancer & it makes me look forward to NO suffering in heaven!!
    I'm a nurse practitioner; and I'd say give her whatever food she wants- her taste buds are probably all messed up from the chemo. Just get calories into her little body!! Add some butter to her mac n' cheese along with extra cheese to boost the calorie intake & fat intake!! (fat & cholesterol is super critical for brain development & vitamin absorption- it's why breast milk is very high in both!). I'm sure when she's 15 years old she'll eat a lot of other foods besides macaroni & cheese!