Busy Week Ahead

We have had a nice long weekend at home.

Anthony finished up at work on Wednesday and will be able to be off for the next month or so. His co-workers have been abundantly supportive of our family. They have made meals, chopped firewood, built chicken runs, and donated their own days off to support our family. Several of the people in Anthony's office worked to create a company wide policy to donate PTO to another employee. The policy was approved and allows each employee to donate up to 8 hours of PTO to another employee. We have been so blessed and most of time Anthony will be away from work will be paid. Thank you, Ayres Associates. If you ever need some good civil engineering done by a pretty outstanding group of men and women, definitely give these guys a call!


Thanksgiving was a pretty laid back day! A sweet girl from our church nominated our family for a meal her 4H chapter puts together each year. Our meal was all prepared and donated by this group of families. We cooked the turkey at home, and everything was delicious!

After our meal we set up and decorated our Christmas tree. This was fun but also stung a little. It felt funny putting up a tree knowing that Esther will be in the hospital, and we won't have that culmination of the season sitting near the tree. The kids were so excited hanging their ornaments, old and new. Each year we take the children to choose a new ornament. Their delight in pulling out their past selections bring me abundant joy. I still need to take pictures, but our tree is adorned with a jet, blasting off into outer space, an intricately sparkly ball with swirls that remind Lydia of a cursive "L", a ballerina with bangs just like Frannie, a camera reflective of Zinnia's love to take pictures, and sparkly pink bow compliments of Miss Esther.

It was kind of a "normal" weekend. Anthony got a haircut, I took a nap, the kids jumped on the trampoline, we went to church, watched football...we just lived life. Today a sweet friend took some pictures of our family, photos are such a gift! If only our minds could so accurately remember the details that move our hearts. I am thankful for photography.

This week will be incredibly busy. Tomorrow Esther, Anthony and I will spend the day at Children's. Esther has 6 scheduled appointments. In the afternoon we plan to "move in" to Brent's Place. The three of us will stay in Denver while the rest of the crew stays home. We're staying over because Tuesday starts with the sunrise!

We'll check into to the surgery center by 7:15am for Esther's Broviac placement. She currently has a central IV line that can be accessed and deaccessed. This is nice because when she doesn't need to have an IV, it doesn't have to be accessed. However, it has limits. The needle must be changed every seven days, and there is only one IV tube to use. During her stem cell rescue (aka: transplant) there is a lot of infection risk to changing the needle and the tape used to secure the butterfly (the wings used to stabilize and remove the needle) is really hard on her skin. A Broviac is a different central line that does not come out, has less risk for infection, and gives more options for care because it has two tubes. The drawbacks are that it doesn't come out and there is daily care needed to maintain the line. Esther's mediport, when she's not hooked up, has no care needed. I am sad she has to endure another surgery, but I think not having to deal with all the extra care a Broviac requires the last six months is nice for everyone. She will also have a bone marrow biopsy while she's already under general anesthesia.

Wednesday she'll have a hearing test, heart function tests, a radioactive MIBG injection to prepare for Thursday, and a meeting with the dietician.

Thursday is another big (and early) day as she'll have an MIBG and CT scan to determine what of her cancer is left and to get a good look at all of her organs before these final, high doses of chemo and transplant. The MIBG is the same isotope used in the therapy she was going to have but a MUCH lower concentration. This isotope is specifically used to diagnose and see neuroblastoma as the cancer takes up the dye and then "lights up" on the scan.

The plan is for Esther to stay at Brent's Place each night this week. The mornings are so early and we don't know how she'll be feeling after her surgery. Her hips were so sore from her last bone marrow biopsy and riding in the car would be painful. The three of us will be in Denver Monday and Tuesday, but Wednesday and Thursday we'll switch so one of us can be here with the kids.

We are about to be blasted with information. Pray our weary minds retain what's needed and remember the resources to find out the rest. So many needs for prayer this week...

• For a safe surgery and clean marrow
• For no lingering pain from her bone marrow biopsy
• For preservation of her hearing and heart. Of the six rounds of chemo she's endured, two of them include a drug that causes hearing loss and a different two include a drug that can cause heart damage. Please pray that her hearing and heart would have been preserved and these tests reveal only health.
• For positive results from her scans, that there would be no more visible neuroblastoma cells. From what I understand, even if there are no cells we can see, there can still be microscopic cells hiding in her body. Since neuroblastoma is so aggressive and prone to relapse, it must be treated with equal aggression. This is why she still has to have a stem cell transplant, radiation, and 6 months of antibody therapy.
• For Rourke, Lydia, Francesca and Zinnia to endure well and rest in the love of their mommy and daddy. I miss them terribly. I miss being their caretaker, teasing out the depths of their hearts as I get to mother them throughout my days. Pray for God to prepare them for the even greater lack of routine that will come with the next couple months, but that in the chaos, they would be secure first in God's love and care for them and second, they would rest in ours.

On a somewhat different note, would you please be praying for me? I am utterly exhausted. The general fatigue of all of this combined with my iron related anemia has been quite difficult the last week. Also, I have developed some lower back pain. The last three days have been fairly intense. I don't remember doing anything that caused the pain, I just woke up with it one morning. I'd like to wake up with out the pain.

 

Also, please be praying for my dad. He has made it through two rounds of chemo and four weeks of radiation. The effects are mounting and it is getting difficult to endure. He has mostly lost his voice and can not eat. He only has two more weeks of radiation and then one more round of chemo. He is in the home stretch, but it is difficult. Please be praying God would meet him, comfort him, and heal him.

 

Thank you for your continued support, prayer, and love of our family. I think we would be in complete despair with out it.

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