Thank you for your continual prayers! We have a few updates and prayer requests:
1.) We just found out that we most likely will be discharged from the hospital as early as tomorrow Wednesday! We had no idea, and will definitely be needing to come back to the hospital by Monday for inpatient and then outpatient on and off for Ella Joy’s second round of intensive chemotherapy. Please pray God would help the 5 of us (Mike, myself, Ella Joy, Asaph, and Mike’s mom) to be able to work it out living in tight quarters in the Ronald McDonald House. We are not able to get the RMH isolation apartment until after transplant. Please pray with us that it would be available to us when the time comes.
2.) Today (Tuesday), Ella Joy is getting contrast by 8am this morning, and will be getting a CT Scan. Tomorrow (Wednesday), she will be getting a PET scan, bone marrow aspirate, LP (spinal tap) and her last dose of erwinia shots. Please pray for the miracle that the 90% leukemia cancer found in her bone marrow can be 0%!
3.) About a month ago, I had taken the initiative to print and fill out all insurance paperwork for Ella Joy’s tube feed for “Nourish.” I knew it could be a very long process, so I was sure to ask the transition nurse to fax the paperwork immediately. I knew that it only took 48 hours for my insurance to initially respond. I kept asking about their response, and she kept telling me that she was waiting too. Recently, I found out that she never faxed the paperwork. So, now the Nourish tube needs that Ella Joy needs is currently not covered, and since we are getting discharged as early as tomorrow, we do not have the luxury of time on our hands as we did a month ago. Please pray our insurance would be able to see the need for her tube feeds as she had lost weight quickly from the start of her high dose chemotherapy. For our third appeal, please pray they would give 100% prior authorization.
4.) After talking with our head oncologist, he was going back and forth debating between two treatment plans for Ella Joy’s second round of intensive chemotherapy. It will either be Nelarabine, Etoposide and Cyclophosphamide or extremely high doses of Cytoxan. When Ella Joy was fist diagnosed with cancer in 2013, she had gotten lower doses of Cytoxan. However, she has never received Nelarabine before. We believe he is leaning towards Nelarabine. Please pray for wisdom from God that our oncology team would choose the best treatment plan for Ella Joy to effectively erradicate every single cancer cell in her body.
5.) Thank you so much for all your continual prayers for Ella Joy! It makes this journey a lot more bearable knowing our friends and family are praying for Ella Joy! Her birthday is this Friday on April 21st, and the very best gift would be to hear that she has 0% cancer and negative MRD in her bone marrow! Thank you for fighting with us!
4/7/2017 (original post)
“For you created my inmost being; you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” – Psalm 139:13-14
This verse made me think of two things I discovered during the transplant meeting:
The first being that it is not certain yet, but if Ella Joy can get to zero cancer and negative MRD, she will most likely have a bone marrow transplant with Asaph as her perfect HLA match donor. A while back when we thought Ella Joy needed this transplant, we discovered Asaph was indeed a 10/10 HLA match! He truly was created by the hands of God, knit together to be a perfect match for his big sister for such a time as this! He has no idea yet, but if and when the times comes, he will be key in helping Ella Joy have a successful transplant!
We met with one of the transplant oncologists, and one thing he mentioned that I frankly had not taken time to think about, is the fact that she will never be able to get pregnant and have children. Ella Joy was knit together in my womb, but she will never get the chance to bear a child in her own womb. It is one of the painful realities of high dose chemo and radiation that come along the road of transplant. Since she was born, I had been praying for her future spouse. That he would be someone who loves Jesus and Ella Joy, and that he could be a strong spiritual leader. Then, I would always pray for my future grandchildren. I do not look forward to the day when I will have to explain to her that she will not be able to naturally have children of her own. When she gets older, and if it is God’s will, I pray that she would have the high calling from God to want to adopt. Or praying there could be a chance she could still bear children, even if it is wishful thinking.
The meeting was as overwhelming and stressful as I had imagined it would be. We had so many questions, unfortunately not all of the questions can be answered until the end of this first cycle when we have a second bone marrow aspiration and find out the percentage of leukemia t-cell blasts in her bone marrow. The last we knew, cancer had taken over 90% of her bone marrow.
We have so very many prayer requests for our never ceasing prayer warriors:
1.) Please pray that Ella Joy’s blasts can truly get to zero and negative. Today and yesterday there was “no data” on her blasts. While this does not automatically mean she is at zero and negative, it is a good thing that there was not 70 or 40 blasts in her peripheral blood as it had been fluctuating before. Please pray that in her bone marrow we will see the 90% go down to 0%! Please pray Ephesians 3:20 prayers that God can do immeasurably more than we ask or imagine!
2.) One of the reasons the oncologists conclude that Ella Joy relapsed with t-cell leukemia is because there were traces of cancer that were hiding in her body, most likely in her spinal fluid or her bone marrow. Please pray that the high dose chemotherapy she is getting now, and the full body radiation she will eventually get before transplant will completely eradicate every single cancer cell in her entire body, even the ones that are trying to hide in her spinal fluid, bone marrow, and anywhere else. There is always the chance she could relapse after transplant and the chances are even greater than before.
3.) Please pray for Ella Joy to get the nutrition she needs to gain weight and get all the nutrition she needs. Studies have shown that kids who get transplants have the most success when they have adequate weight and nutrition. Ella Joy still has not reached her ideal weight since she has lost so much when we first started the intensive chemo. Please pray she would stay active and want to walk around the oncology unit. Since her ANC has been zero since we got here … she is not able to go anywhere outside of her room or floor. I also try to stay with her at all times and I also do not go out to keep germs and bacteria away from her. Please pray that she would stay healthy and fever free especially when we get close to transplant.
4.) Please pray for Asaph. He has no idea at all that he will be her bone marrow donor! We will be needing some help from a transplant child life specialist to help explain this to him. It has not been easy for him making the transition from a comfortable home in Chicago to living at the Ronald McDonald House and going to a special hospital school in Seattle. And now when the time comes, he will be put under anesthesia and 2 huge needles will be inserted into his bone marrow and he will donate his stem cells for his big sister! Please pray for him to stay healthy especially right before transplant, and that he would recover quickly from this procedure.
5.) There were so very many things that could go terribly wrong during and even after the bone marrow transplant, but for now, please pray that there would be successful engraftment. Although Asaph is a perfect match for Ella Joy, there are still real risks involved with graft versus host disease. Please pray that God would protect Ella Joy’s little body and help Asaph’s cells to restore her destroyed bone marrow. Please also pray that Asaph’s cells would help graft versus leukemia. Just Like Revelation 20:7-10 as the devil was thrown into the lake of burning sulfur. Pray that fire would come down from heaven and devour every single cancer cell in Ella Joy’s bone marrow, spinal fluid and entire body!
6.) There are so many more specific prayer requests regarding transplant, but please pray for Mike as he left today for his Asia work trip. Please also continue praying for Mike’s mom as she sacrificially takes care of Asaph and stays with him at the Ronald McDonald House. Please also pray for me (Anne) as I continue to help Ella Joy every day and night. She has started up on her dex steroids and she has been waking up at 4am in the morning wanting mini pancakes, waffles, fish sticks, Babybel red wax cheese, Hawaiian bread sandwiches with Buddig lunchmeat and American cheese and taquitos. I still cannot believe she is still underweight! She is also getting Vincristine which is a chemo she has gotten before, but it makes her extremely tired and constipated.
7.) We cannot thank you enough for following our every post and praying through every single request. There have been some wonderful victories in Christ. Ella Joy has stopped spitting up while walking around. There was a time she could not take 5 steps without spitting up. Ella Joy seems to be getting used to her nose tube. She still has pain when she uses the bathroom and she has also been having elbow pains. Please pray God would help ease these pains. I had mentioned in a previous post that Ella Joy needed to get 12 erwinina shots in both legs, but I was mistaken, she actually needs 24 shots in both legs. It was heartbreaking to hear, but please pray Ella Joy would be brave, and that Jesus would comfort her for these extremely difficult erwinia shots. Ella Joy’s physical therapist had noticed that her hips and legs have gotten noticeably weaker, most likely from being in bed for such a long period of time, as well as the chemotherapy even from before continues to weaken her bone density.
I would like to end this post with a poem that Asaph recently wrote in school about Ella Joy as well as a journal entry Ella Joy wrote a couple days ago here in the hospital:
Please don’t give up praying! Thank you so much!