Things have been quiet the last few days and we are still home. Esther did need both a blood and platelet transfusion last Thursday. Her ANC was only 121, so we've just been holding our breath, waiting for a fever. She was running a lowish fever Thursday evening, but it went back to normal by the time we went to bed. We were anticipating a fever all day Friday, but it never came. Today she's been playing like a normal 3 year old who is fever free. Could we possibly escape two rounds of chemo without a hospital stay? We are certainly hopeful, but peaceful for whatever happens.
On Friday I was able to join the kids at Classical Conversations. It was so nice to be there, at the same time, familiarity is strange. I often feel out of place in circumstances like that because everything is so different now. I am comforted that God is not different, He is the same. Today Anthony made cinnamon rolls for breakfast and took Zinnia to the grocery store. I took the big girls to get some leggings, a freezer to be able to fit some frozen meals, and a dryer to keep up with our amazing new washing machine, a generous and timely gift from my aunt and grandparents. Thank you for such loving gifts to allow us to get these things that will help make life a bit easier.
This whole treatment plan is about to become far more intense and fast paced. Esther's surgery is scheduled for Monday, October 1st. This is a week later than we were hoping for, but another week of down time is a good thing. We have a pre-op with the surgeon this Wednesday and will hopefully know more of what the surgery will look like. It all really depends on the size of her primary tumor and how much of the surrounding tissue has been damaged by the cancer. We know she'll loose her right adrenal gland, but possibly some or all of her kidney too. They won't really know until they can actually get in the and see the tumor. If it's small enough, it may be a laparoscopic surgery. That would be a huge blessing because she will recover so much easier. We don't have her scans scheduled yet. Esther's oncologist said they like to have the scans close to the surgery, so we'll know on Wednesday.
Depending on how invasive the surgery ends up being, Esther will have 2 to 4 weeks to recover and then she'll have a last round of her "regular" chemo. It will be the same drugs as the time before last. At the end of the 21 days we will head to Cincinnati, OH for her MIBG therapy.
We had originally thought we would take the kids with us, but after learning a bit more about the therapy, it would be really hard on them to be there. Anthony and I will be on 12 hour shifts to care of Esther during the treatment. During our time caring for her, we will pick up some of the radioactivity she is emitting, so that means we can't have any physical contact with other people. It would be really hard on the kids for us to not be able to touch them for a couple weeks. We're working out a plan for the kids to stay here with Anthony's Aunt Candy and cousin, Danika, for part of the time and then with his mom and Aunt Melody for another part of the time. Danika has come to visit during the summers and our kids love her. They will be thrilled to be spoiled by their Grandma Sherry, aunts, and special cousin.
As soon as Esther is not emitting radiation, we will fly back to Colorado, and she will receive some of her stem cells to rescue her immune system. This is a wild card time. Since this part of her therapy is study related, they aren't sure how quickly she will recover from the MIBG therapy. She may need more than one stem cell transfusion. Based on how quickly she recovers, she will have a minimum of five weeks and a maximum of eight weeks to begin her high dose chemo. This chemo will be inpatient and she will have another stem cell rescue. We can expect to be in the hospital about a month in the highly regulated BMT side of the oncology floor. Then we will have to relocate for about 100 days.
After a stem cell rescue following such intense chemo, infection comes easily and can be dangerous very quickly. We need to be under one hour from the hospital. It takes about an hour to get there now, but only in good traffic and good weather. It will be January or February during this recovery time, so weather will be a big factor. There are a couple of homes that are set up with the needed clean environment, but they may not accommodate a family of our size. Esther will have to wear a mask when outside of our home and even be covered by a blanket when riding in the stroller to and from the hospital. She can not be around smoke of any kind and even just a little dust or mildew from a shower or drain can cause infection. So, we'll just have to see what happens. One blessing is that kids under 12 are not allowed in these homes during the winter months, but since we homeschool, they are allowed to stay. We will learn more about this during her 5th round of chemo.
Following this high dose treatment, Esther will have two weeks of radiation and then she will have a month or so before beginning six months of antibody therapy. The antibody therapy rebuilds her immune system and teaches her body to fight future cancers. This therapy is a big deal in cancer research. While it was being studied the positive results were so clear the study was stopped because it was unethical to not give every patient the therapy. Cancer research does not often see such clear results and this therapy is becoming standard practice for children, like Esther, who have cancers with high relapse rates. However, it is scary. She will have a lot of home care and half of the treatment will be pills and shots from home. The other portion will be about 5 days in the hospital for five out of six months. At least two of these treatment weeks will be in the ICU because she needs such close monitoring.
Then we will be done. Then we really learn what it means to trust.
This "done" part has been a fight for me. I have been struggling with anxiety. Last week there was a big cancer fundraiser. You may have seen it, "Stand Up 2 Cancer." Two of the kids on the show had stage 4 neuroblastoma. Taylor Swift sung a song about a little boy, Ronan, who lost his battle. The other little boy, Justin, is from Colorado. I've met his mom a couple times, she gave Esther a present. He has had 4 relapses, I think. Her best friend's daughter also had stage 4 neuroblastoma and is about to celebrate five years, cancer free. She will be cured. There is hope, but this cancer is awful.
I think this year of active fight for our daughter's life is training for us to trust when waiting in the lulls. In many ways it is easier to be hopeful when you're doing something. But in those times of quiet, times of waiting, that is the hardest. It is true of each of our lives.
We are doing alright, learning a new normal. We are not all that brave, we don't have another choice. Maybe that's not true. We could try to do this on our own. God is good and kind and hope is found only in His goodness. Glory to Him alone. I read bits of Ronan's mom's blog and it was dark, depressing. That is life without Christ. We are weak, so weak. Our journey would be hopeless without the Lord. The only hope or joy Ronan's mom had was in his cure, the agony overtook her and won. I get that. I can't imagine anything more painful than watching your child suffer and then die. God knows this, He did it. It is utter devastating and will destroy us if our hope is only found in an outcome begged for on calloused knees. Our hope can not be planted upon Esther's recovery. While we absolutely YEARN for this, we know God has her in His care and that all hope is not lost, even of she dies. She is a gift to us, a blessing and reward for the time He has ordained. The pain of it all is more than I could ever have imagined, but there is so much peace found in His goodness and love. If Esther dies, it will be scarring, but that is not the end! There is new life for her and for us in heaven where the will be no more tears, no suffering, no death. It is freely offered to all of us through Christ's death and resurrection. Our strength and hope is founded on that truth, not on the circumstances of this journey. Praise to Him. Praise to Him.