We do not lose heart

4-30-17

This second round of high dose nelarabine, etoposide, and cyclophosphamide chemo has been tough on Ella Joy.  I noticed right away she was slower in her thinking and sometimes I had to call her name several times before she would respond to me.  I had asked our oncologist about it, and he said this very well may be a side effect of this chemotherapy treatment.  We are praying it would be short term.  The chemotherapies are given back to back to back for one hour, two hours, and then one hour again.  The other thing I have noticed is that she has  been crying and moaning at night since we started this cycle. The oncologists are expecting neuropathy (hand and feet pains) with this chemo treatment.

Please help us lift up Ella Joy to the Lord in prayer:

1.) Please pray that this intensive chemotherapy would erradicate every single cancer cell in her body.  That the 1.1% would come down to ZERO and NEGATIVE.  When we get the bone marrow aspirate on day 28, (today is day 5), please pray that we would receive the best news ever, that they cannot detect any cancer, even with the flow cytometry, and that we can more forward to transplant!  Tonight we get discharged from the hospital, and then we come back on May 1st for a Neulasta shot she needs to get in her arm to recover ANC counts.  Then, May 2nd is labs at the hospital as well as a meeting with Dr. Cooper our main oncologist.

2.) Please pray for the next steps.  At this point, we are going to have to have a third round of intensive chemotherapy.  The reason is because initially, she had cancer blasts in her spinal fluid and she needs to get the maximum radiation before transplant.  The timing did not work out, so after her 2nd round we are currently on, she would be off chemotherapy for one month before we started her radiation.  That is way too much time for aggressive t-cell cancer to spread again.  So, unless there is a cancellation and we gain an earlier slot, we are going to have to go through another round of intensive chemo.  Please pray that it would be the Lord’s will and His sovereign hand that leads everything from the timing of radiation to the transplant, and that He would give the oncologists and the transplant team much wisdom and discernment to know how to best go forward from this point until transplant.

3.) Mike’s mom will be going back to New York for a period of time.  Please pray that we would know exactly what to do with Asaph,  He is not allowed to sleep over at the hospital.  The earliest he is allowed to come is at 8am.  Mike goes to work at 4-5am and it will be tricky getting Asaph to school on time.  Please pray that God would provide for us so that we can get Asaph to school and that Mike would be able to get to work without any complications during Ella Joy’s inpatient stays.  (Ella Joy may have to be inpatient if she gets a fever or if there are complications when her ANC is at zero).

4.) This second high dose of chemo has been tough on Ella Joy, and she has not eaten anything since it started.  Thank the Lord for the Nourish feed she has been on!  I believe it helps to maintain her weight, but please pray her appetite would come back so she can start eating again and start gaining weight,  She has not yet come back to her original weight.

5.) Most of Ella Joy’s hair has fallen out, and she has been telling me how much she just wants to go home and get out of the hospital.  She often talks about how she misses her friends from home, and how she wants to do some of the things we used to do at home.  Please pray Ella Joy would not be discouraged, but that she would continue to fight.  Please pray God would protect all her organs and good cells, and that every single cancerous cell would be destroyed for good.  Please especially pray for those cancerous cells that are trying to hide in her bone marrow and spinal fluid and anywhere else in her body.

6.) Please pray that Ella Joy and Asaph would be healthy especially as the day of transplant approaches (sometime in the beginning of June we would start preparing Ella Joy as well as Asaph).  Please pray that God would protect them from germs and anything that would delay the transplant.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” – 2 Corinthians 4:16-19
Thank you Saints of God, your prayers mean everything to us!

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With Hands Lifted High

4-22-17

I wish I could tell everyone that after Ella Joy’s bone marrow aspiration, it was zero.  But we got the call last night on her birthday and found out that she still has blasts in her bone marrow.  We are so thankful to God that the 90% blasts in her bone marrow went down to 1.1 (that in itself is a gift from the Lord), however, her relapsed t-cell leukemia this time around is a very different beast, more aggressive and smarter than before.  We have one more round of 28 days of aggressive, intensive, high dose chemotherapy to get her cancer to ZERO and NEGATIVE MRD.  For the time being, we have been discharged from the hospital and are staying at the Ronald McDonald House.  We will go back to the hospital on this Tuesday and then start her next cycle on Wednesday and be admitted again.

Once again, please pray with us, as we have many prayer requests:

1.) Our oncologist has decided to go forward with the nelarabine, etoposide, and cyclophosphamide chemotherapy plan. Since she has never gotten nelarabine in the past, they are gonna try to hit her cancer with something it has never seen before.  We are praying with everything we have that this will eradicate every single cancer cell in her entire body.  We absolutely cannot go to transplant unless Ella Joy has ZERO cancer.  Please cry out to God with us for this next cycle of intensive chemotherapy to destroy every single cancer cell trying to hide in her bone marrow.  Even when kiddos get to transplant, it is the cancerous cells hiding that cause them to relapse afterwards.  We have only 28 days!  If God can bring her cancer in her bone marrow down 88.9 %, we whole-heartedly believe he can bring it down to ZERO and NEGATIVE!  That 1.1% cancer in her bone marrow has nothing on our Lord and Savior and Healer Jehovah Rapha. Please pray with us Psalm 41:3 prayers that the Lord would restore Ella Joy to full health.

2.) The results from the CT and PET scan have also come in. Ella Joy continues to have fluid build-up in her lungs.  Please pray that the fluid would slowly but surely go away so there would not be any major complications as we go forward with the 2nd round of high dose chemo.

3.) When we were discharged from the hospital, it happened so fast, and it was extremely stressful with Ella Joy’s PET scan, BMA, LP, and erwinia shots, and then right after IV line care wanted to meet with me to teach me how to flush and hep lock her line, then nutrition wanted to talk to me about Ella Joy, and then I had to make sure insurance would cover Ella Joy’s Nourish (which I had to personally call insurance for many days and hours, and it is finally covered!) The hospital transition nurse sat on the paperwork for about a month, and I had to ask insurance to escalate this since I was getting discharged that day!  When we got to RMH, I was not equipped with the training I needed, and Ella Joy’s tube leaked all over her bed, and when it was time to give her meds through her tube, I realized the hospital did not teach me any of this!  Please pray that we would effectively be able to take care of Ella Joy’s medical needs.  I stayed up until 6am in the morning organizing all her medical supplies and medicines.  Not to mention all of the boxes of stuff we have accumulated in her hospital room for only one month!

4.) Ella Joy’s livelihood has slowly diminished. She has not been as active as she was before, and she is extremely sensitive and moody (even though she has been off steroids for a bit of time).  Please pray that she would be able to regain some energy and want to play with Asaph and do some of the things she used to love doing.  We are debating between her wanting to go to the Hutch school Asaph goes to, versus going to the hospital school which is only an hour and a half long.  We are not sure if she would have someone who would know how to turn her pump off or refill her bag for her tube feeds.  Even the social worker wasn’t sure.  Please pray that the times we are out-patient, we would make the best decisions for Ella Joy’s education.  Her ANC has been zero for the longest time, and will continue to be zero when we start up the high dose chemo again.  Please pray for God’s protection over Ella Joy against germs and viruses.

5.) We will have another long list of prayer requests for transplant when that time comes, but before we can even get to that point, we need to pray that at the end of this next 28 day intensive chemo cycle, the flow cytometry would reveal zero and negative.

Thank you so much for your faithful prayers!  We are daily encouraged by your love and support for Ella Joy and our family.  Your prayer support reminds me of Exodus 17:10-13.

So Joshua fought the Amalekites as Moses had ordered, and Moses, Aaron and Hur went to the top of the hill. As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning.  When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset.  So Joshua overcame the Amalekite army with the sword.”  You all are Aaron and Hur to our family, helping us to hold our hands up to the Lord when we get weary and tired.  Our prayer is that just as Joshua overcame the Amalekites, with God’s strength, we would overcome this aggressive cancer with the power of prayer and His healing hand!

On Easter Sunday, Ella Joy wanted to kneel and pray to Jesus in the hospital church.

“Rejoice always,  pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.” – 1 Thessalonians 5:16-18

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Wonderfully Knit

4/18/17 Update:

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!

Mount Carmel Prayers

Living in this hospital room every day, and sleeping here beside Ella Joy every night, I often think about Mount Carmel.

…the prophet Elijah stepped forward and prayed: “Lord, the God of Abraham, Isaac and Israel, let it be known today that you are God in Israel and that I am your servant and have done all these things at your command.  Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.” Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.  When all the people saw this, they fell prostrate and cried, “The Lord—he is God! The Lord—he is God!”- I Kings 18:36-39

One of my favorite parts of this story is when Elijah had the people pour 4 large jars of water on the bull offering and the wood. And they not only did that once, but twice, three times!

and then the bold prayer by Elijah himself:

“Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.”

It is my utmost desire that Ella Joy would not only be healed from this relapsed cancer, but also that by God’s miraculous work that friends, family, even non-Christians would come to see an amazing God who can do ANYTHING!

Here are some prayer requests for our prayer warriors who are relentless in interceding for Ella Joy:

1.) Please pray for Ella Joy and her feeding tube. Ella Joy had been losing weight since she has started high dose chemotherapy. We had to get a nose tube inserted, but she threw up, cried, and spit up after the French 10 was inserted. Right after that, she choked on a pill and and another time on some tofu she was eating. She felt it was lodged in her throat. Even today, she is still still spitting up, but we are praying that the Nourish she is getting will not only give her weight but also give her excellent nutrients that she needs to fight this aggressive t-cell cancer. She has slowly been eating easy-to-swallow foods, and we pray she would continue to do so even with the tube feeds, so she can gain extra weight and continue the natural eating sensation.

2.) Please pray for ZERO. She has not yet been at zero yet. Since she is allergic to a chemo called peg asparaginase, she has to get the 12 shots in her leg. These are spaced out, so she is not getting the full chemo in one shot. What it seems like is that when she does get chemo, it looks like the peripheral leukemia blasts decrease, but on the days she is not getting chemo, they increase. The goal is zero, however the aggressive t-cells are smarter this time around, according to our oncologists. We cannot proceed to transplant if do not get to zero, so we are asking you to please continue praying for ZERO and NEGATIVE MRD!

3.) We have a date set for meeting with the transplant team! April 7th! Praise the Lord! Please pray that everything would go smoothly. They agreed to meet us at the hospital so I do not have to leave far from Ella Joy’s side. We already know it will be a very overwhelming meeting as we discuss all the things that can go wrong with transplants, but please pray we would be focused and have wisdom to understand everything clearly. Please pray we would unanimously agree on a solid plan. May the Lord lead our steps (Proverbs 16:9).

4.) Please pray for Asaph. We are so so thankful to God he is enrolled in full day school, but we know this is also not easy for him. He misses his friends from home, and many times I simply do not have the time I used to have to spend with him because I am constantly taking care of Ella Joy. We will have to see after the transplant meeting, but he may even play a huge role as a super sib donor to Ella Joy! Please pray that the Lord would continue growing him into a young man in Christ and not an iPad addict.

5.) Ella Joy’s ANC is at zero, and she is not able to go to the hospital school. Please pray she would continue to be motivated to read and write and learn as she was before. She misses her friends from home and is often sad she cannot do the things she did before. We are even having a hard time getting her out of bed to walk around the hospital. Please pray she would be motivated to even walk around, because if she doesn’t she will be at risk for weak bone density and hip problems in the future.

6.) Please pray Mike and myself will continue to trust and depend on the Lord. Also, please pray for Mike’s mom who will be helping out with Asaph, as well as his father who will stay until Tuesday. Please pray that they would be strengthened as it is not easy for them to leave the comfort of their home to help us as my sister Joanne also did the week before. Please continue sending me Bible verses to reflect on! They really help me as I meditate on them daily!

7.) More of a thank you than a prayer request – to so many of our family and friends who have been so incredibly generous to our family. You know who you are, and so do we! Mike and I often talk about how God is using so many of you to be such blessings to us, and we just want you to know we appreciate all the prayers, love, and support!

Please pray that just like at Mount Carmel, a miracle would happen here in Seattle Children’s Hospital. We pray Ella Joy would be able to get to zero cancer and to have a successful transplant. The 4 water jugs poured out 3X reminds me of our low 30% or less chance our oncologist told us she has to survive this. However, verse 38 happened:

“Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.”

We pray the fire of the Lord would burn up all Ella Joy’s cancerous leukemia cells, and that she would be able to have a successful transplant without any serious side effects from the total body and additional radiation even to her brain.

Thank you so much our armies of prayer warriors!