5-21-17 updated post
It has been a few days since we started this third round of high dose chemo, and second round of nelarabine, etoposide, and cyclophosphamide. The side effects are getting worse. This intense chemotherapy is causing Ella Joy skin discoloration. It is apparent on her scalp, neck, stomach, wrist, and other places on her body. Please pray that it would not continue to spread. Our oncologist said it can sometimes be permanent, so we are praying it could be something that can go away after some time.
We noticed that she continues to talk nonsense while on this chemo. The last time, she would cry and moan at night, and this time, when she needed to go to the bathroom, she shouted out “Asaph! and Appa!” I thought she was talking in her sleep, but she needed help going to the bathroom, and didn’t realize to call for me.
This time around she is also more nauseous. The first time, it was towards the end of the cycle when we were discharged, when instead of giving her zofran after 8 hours, I waited until morning, and she threw up. This time, it is the middle of her chemo treatment, and she threw up before her next zofran was due. We try as much a possible to not give her drugs unless absolutely necessary, but after she threw up, we gave her benadryl with reglan. This drug makes her extremely tired and sleepy, so we are praying she would not be as nauseous so she doesn’t have to take additional drugs. We want her to be active and walking around the hospital. Even her physical therapist noticed her legs and ankles were tight, and she needed more stretching, walking, and physical activity.
As we expected, she has absolutely no appetite. Before, she would take a small little Asian ball ball cookie that melts in her mouth, but after this chemo treatment started, she refused to take even this small cookie. Please pray that her appetite would come back sooner than later after this chemotherapy treatment is over. She is still not at her original ideal weight.
Thank you for your faithful prayers for Ella Joy! God uses your prayers to carry us, to encourage us, and to give us strength during the most challenging times.
“Then you will call on me and come and pray to me, and I will listen to you.”
– Jeremiah 29:12
5-18-17 (original post)
In Genesis 32, Jacob wrestles with God. The part I love best is when Jacob says that he will not let go until he blesses him. These last few weeks, I could not sleep. God woke me up in the middle of the night, and I knew it was because I needed to pray. During that time, I felt like in my praying, I was wrestling with God and I would not stop until He blessed Ella Joy with Zero and Negative MRD.
Just now, we got the phone call from our oncologist. Praise the Lord, He has answered our prayer of ZERO Cancer and NEGATIVE MRD! I truly believe this is a miracle from the Lord. Even our oncologist told us before the BMA that he wouldn’t be surprised to see a percentage of cancer lingering with her t-cell leukemia. He was hoping for, but not expecting zero and negative mrd! We want to thank you for praying alongside us with your families and wrestling in prayer for Ella Joy!
Please continue praying as there are still many prayer requests as we get closer to her radiation work up and bone marrow transplant date.
- Ella Joy will be admitted tomorrow Friday the 18th for the same 2nd cycle of high dose nelarabine, etoposide, and cyclophosphamide. We are extremely thankful that Jeannie will be coming to visit the day before Ella Joy gets admitted, and Mike’s mom is scheduled to come back sometime in the middle of her inpatient stay. Although I do not believe Ella Joy experienced full blown neuropathy as the oncologists told me often is a side effect, I did notice that she was weaker when using her hands and it was hard for her to do things like unplugging her tube pump, pushing down a larger syringe, and her hands were sweaty and tired when she was coloring. The last time she went through this chemo cycle, she seemed a little off, cried and moaned almost every night, and sometimes did not make sense when she talked. Please pray for God to protect her for this 3rd round of high dose chemotherapy. It was not ideal for her to get this 3rd round, however due to the timing of her work up/radiation/ and transplant date of July 3rd, we had no choice but to give her a 3rd round so the aggressive t-cell cancer does not rear its ugly head and spread again. Please pray with us that every single cancer cell will be obliterated, annihilated, and demolished forever and ever and ever!
- The other concern with going through this chemo cycle again is that Ella Joy completely lost her appetite. She had never regained it, and now that we are going back in, I am so afraid that she will never gain an appetite for food. She had also been extremely nauseous and threw up many times after being discharged. She even threw up her tubie and had to painfully push it back in while crying. Please pray that after this cycle, she would eventually regain her appetite for food, and that she would not be as nauseous this time around. Please pray that the Zofran would work so we do not have to give her additional drugs.
- Please pray for wisdom for myself and Mike as we make decisions on her behalf for her upcoming transplant. Today, Ella Joy asked me about radiation. I believe this will be extremely hard on her as she has never experienced radiation before. She will be getting the maximum allowed to give to patients, including full body and then additional cranial and spinal radiation. We need to decide if we want her under anesthesia or awake during these radiation procedures which happen sometimes twice a day for weeks.
- Our tentative transplant date is July 3rd. Please pray that if it is God’s timing and an earlier date opens up, that we can get her radiation and work up done earlier so we can have an earlier transplant date. Even now, Ella Joy has a runny nose and a little cough. Please pray with us that it would soon pass and not linger or get worse. Please pray that God would protect Ella Joy and Asaph from any germs or viruses that would potentially delay the transplant.
- There are so many things that could go wrong with the transplant, but please pray for God’s sovereign hand to be over the entire transplant team, oncologists, nurses, all the medication needed, and over all of Ella Joy’s organs and cells. We are praying for the cancer to be eradicated for good and to never come back, but we also pray that the medications that we give to Ella Joy would not cause a secondary cancer or more problems down the line.
We cannot thank you all enough for wresting in prayer with us! It has been just about 2 months since we hastily packed our bags and took the flight to Seattle Children’s ER. Never to look back at the comfortable every-day life we once knew. Please pray with us for Ella Joy and Asaph to be in ideal health and ready for June 7th, the first day we arrive at Seattle Cancer Care Alliance to start the preparations and work up for transplant, and it will also be the time Asaph learns he will be Ella Joy’s donor!
I was so extremely thankful for the kind messages so many friends and family gave me for Mother’s Day. I was also very thankful for a visit from a special friend who also happens to be quite an extraordinary mother.