Today, we were seen in room six. We were given test results and a new treatment plan. We had labs drawn and well wishes given. But, as we sat in room six and stared at the stupid tiger on the wall, I could only think of the last time I was in that room. Room six. The room with a stupid cartoonish tiger on the wall. The room where we spent… day one. The room where we first discuss treatment and admission and T Cell Lymphoblastic Lymphoma. And, I hate that room and that stupid tiger. And, I hate cancer.
The treatment that I just spent 22 days in the hospital for… Away from my family, trapped in a small room, isolated, scared, emotional, hurting… Those 22 days were worth nothing. The treatment regiment didn’t work. While the inflammation in the neck lymph nodes did decrease, the PET scan showed the metabolic activity still indicates that there are active cancer cells. The bone marrow aspirate took much longer to get results than normal, but the results were not good. The BM shows an increase in diseased cells, from 0.8% to 1.1%. While that is not a significant increase, nor a significant amount of overall leukemia, it still shows that the treatment was not effective.
Before I can get a transplant, we need to have at least two months of “control” of this desease. That means I need to get in to remission again, and stay there for 60-ish days.
We received our new treatment plan today, and as much as I hate cancer, I LOVE my care team. They consider my mental health as well as my physical heath when designing treatment plans. That my friends is huge. So, our new plan is typically given as an inpatient regiment, but they are going to try it as outpatient for me! I’ll still have several visits at the hospital each week, and will be learning to administer port infusions so that I can give them to myself daily, but I’ll get to be present. I have no doubt this will be a rough month (or two), even though I’m feeling extremely blessed at the moment.
Praise Report:
- Decreased lymph node swelling
- Attempting outpatient treatment
- An amazing care team
- No significant growth of cancer this cycle
- They found a willing donor! (They will do a secondary search once I reach remission, so keep sending in those swabs!)
- No major side effects of the most recent treatment.
- Wonderful care when I was inpatient
- Beautiful friends who bring meals, gifts, cards, and send thoughtful messages
- Shortened hospital stay by 6 days
Prayer Request:
- I still have some facial paralysis from the biopsy performed last month.
- Always pray for complete and total healing.
- Complete Remission achieved with this next cycle.
- My care team.
- ZERO secondary infections/illnesses.
- That my donor stay healthy, available, and willing. Also, pray that God blesses them beyond measure!
- Mike, Ryan, and our mighty support system.
- Things get started Monday, and I’m anxious. Please pray for freedom from fear.
I hope you never set foot inside of room six. I hope that you never have to look at that stupid tiger behind a doctor delivering crappy news. I hope that you never hear the words “you have cancer.” I hope that you are blessed with a long happy and healthy life. I hope… but, I still hate that stupid tiger.
With love,
Elizabeth
Let There be Fight 
Elizabeth I will keep praying for you every single day. I will lift you up in the morning when I wake up and when I rest my head on my pillow. I know that I am on the donor list but do I need to call them every now and then? How does that work?
You do not need to call or do anything special if you are on the registry. Thank you for keeping me in your prayers. ❤️
Dearest Elizabeth ~ We continue to pray for you and your sweet family. I’m praying for a complete recovery and healing. ♥️ We’re proud of your courage and determination dealing with this very challenging disease. Remember to count yourself in the group that is able to beat it. Pretend those tigers are trying to fend off cancer. ♥️
I hope you can spend time with your family while you’re receiving outpatient care. Here are several ideas of things you can do. Maybe you can record yourself reading books or just talking to Ryan. That way, if you’re not available to read to her, Mike can show/play her a recording while you’re receiving treatment. If she has a baby book, write her an inspirational letter to put in it of your love for her, dreams for her and any other motherly advice you have.
Addendum to earlier message.from Janet: We want you to know we acknowledge that you are dealing with a monstrous thing, and sincerely regret that your recent treatment didn’t show you the response of being in remission. We continue to pray for remission and complete healing.
I am so sorry to hear that your first attempt didn’t bring the results we are all praying for but I am so grateful that you will be at HOME giving your own treatment . This a huge answer to prayer. God took a whipping for you Liz.. He could have just been sent to be crucified but he was scourged, spit upon and humiliated and the Word promises us that “He was wounded for our transgressions , he was bruised for our iniquities , the chastisement of our peace was upon him and with his stripes we are healed”(Isaiah 53:5) . In the mighty name of Jesus, I hold onto these promises and I rebuke the spirit of fear and discouragement. Keep holding on to the One who bore your disease .. the One who wants you well .
I love you and am here for you sister..
This was our second failed treatment plan. ☹️ And I’m forever thankful for my Lord and Savior! I want to meet him and ask him all the questions and bask in his love, but I don’t want to meet him so soon! I want to enjoy his beautiful workmanship in my sweet daughter, watch him work in and through my husband and claim his miracle in my life for all to hear and see!