The Journey Continues

After a week at home we leave tomorrow to begin Bone Marrow Transplant. Of the three phases of treatment for Stage IV Neuroblastoma this is the one that seems the most daunting. INDUCTION is the first phase and for us consisted of six rounds of chemo and surgery. CONSOLIDATION is the middle phase consisting of the Bone Marrow Transplant and Radiation. MAINTENANCE is the last phase consisting of a type of anti-body treatment called Immunotherapy. God willing our treatment will be over in the Fall.

We made it through induction with No Evidence of Disease which was the most wonderful news we could have received. But the war is far from over. This disease is vicious and treatment doesn’t end after chemotherapy for a reason. We must keep fighting because even though there is no evidence of disease, research tells them there are still invisible cancer cells just waiting to spring up.

Bone Marrow Transplant (BMT) is a little overwhelming to say the least. So here’s a brief look at what we’re looking at over the next six weeks. First of all, when people say Stem Cell Transplant or Bone Marrow Transplant they are talking about the same thing. The Stem Cells in our Bone Marrow produce all the other cells in the body. People can either have a liquid cancer (of the blood) or a solid tumor cancer (there may be cancer cells mixed in the blood but the blood itself is fine). Neuroblastoma is a solid cancer. Izzy’s started with a mass in her left adrenal gland that spread to other smaller masses throughout the bones. In someone with a liquid cancer, like Leukemia, they need all new marrow from someone else because theirs isn’t functioning properly. Izzy’s is fine so they were able to harvest her stem cells back in August and freeze them. Technically, since her bone marrow is okay, she doesn’t really need a ‘transplant’ with all new marrow from another source. What she is technically getting is called a ‘rescue’. They are ‘rescuing’ her stem cells from the cancer cells that had invaded it.

This process will work like a countdown for a rocket launch. Tomorrow we will be admitted on day -8 for the placement of a new central line. (Her old line had to be removed because of an infection). The line is basically a catheter in the middle of her chest that will take IV meds, blood products and her stem cells directly to her blood stream. Day -7 through -4 she will receive a high dose chemotherapy that will wipe out all the cells in her blood stream. Unlike regular chemotherapy, she won’t even have the tiniest amount left to begin reproducing new cells. Day -3 through -1 are rest days. They want to give the chemo time to get out of her system before they place the new cells. Then on day zero her stem cells will be placed. Right now it’s looking like that day should be January 8th. After that we wait for the stem cells to engraft and her blood counts to return to normal. They expect that to take two to three weeks. If we are discharged at that time we will be moved to an isolation room at the Ronald McDonald House until day 40. Day 41 we start radiation.

During this hospital stay things will be different than they have been in the past. To help with infection control the rules are very strict. We aren’t allowed any visitors. I can have another caregiver helping me during the day but they aren’t able to spend the night. I won’t be able to eat in the room, shower or use the restroom. Izzy will be in isolation the entire time, though it is unlikely she will feel like getting out of bed at all anyway. We’re told it’s a lot like the flu with it’s aches and pains, sleepiness, nausea and the addition of mouth sores. The most important thing you can pray during this iis that it works. Continue to pray that all this isn’t for nothing. That the cancer would continue to be destroyed.

On day zero, when Izzy gets her new stem cells, the Child Life department at the hospital will have a birthday party for her. January 8th will be her new, second, birthday. It will be her second chance at life. I never thought we would need that but now that we do I love it. And my prayer is that next year on January 8th and every year after I get to watch her eat birthday cake just because.

12 Replies to “The Journey Continues”

  1. We are praying with you, walking with you, watching expectantly with you, as the countdown begins. Know that He knows your fears, your doubts, your questions, your desire for joy in the midst of the suffering. Remember “Immanuel”–I promise He’ll give you glimpses of that Truth during this part of the journey. BMT is its own beast, but YOU ARE NOT ALONE! We love you guys!!!

  2. Praying for all of you, honey. We love you, and even though we aren’t there with you physically, we are there with you emotionally. You are in our thoughts always, and pray for you all daily. May God be with you all and get you all thru this with His love and answered prayers! LOVE YOU!

  3. Hopiland/we continue to be in prayer for Izzy, you, and the family. I’ve read it over but it still overwhelms me what is coming down the pike for sweet lil’ Israelle (I love her name). I pray for comprehension. But mostly, I pray for an encompassing supersurge of the ALMIGHTY’S HEDGE OF PROTECTION around y’all during this time. WITH GOD, ALL THINGS ARE POSSIBLE. I so believe that. We love y’all so very much. In HIS name, JESUS. <3.

  4. Everyone in my family and all of my friends will be praying for Izzy, you and your family during this time. January 8th it is – her second birthday. I love it too and can’t wait to see pictures of her eating her cake just because….

  5. We r praying that all goes as planned n that Izzy continues to fight n be strong! God bless your family and that sweet baby. We r all right behind you.

  6. Sending lots of prayers and hugs. Keep focused on the goal during the days ahead. We’ve been in your shoes and we will be with you each step on the way with our thoughts and prayers. God bless each of you. We have prove of the power of prayer.

  7. I love reading your entries and being able to pray specifically for Izzy. You and your family are well loved! As we pray and celebrate each victory over this cancer, I can see her story grow. God has something huge planned for Izzy! Her new birthday is our wedding anniversary, we will celebrate our life together and her new life, giving thanks for every new year! The date is also Elvis’ birthday, maybe she could wear some blue suede slippers with her princess outfits! 🙂

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