A mere whisper from God is enough

***update***

5-9-18 Wednesday
Day +313

We are so incredibly blessed to have such amazing friends who knelt with us in prayer through the length!

Although there are several tests that are still pending, we just found out that Ella Joy was positive for c diff which absolutely explains her abdominal cramping, dehydration, rapid heart rate, fever, and low blood pressure. Although c diff is still not what an immunosuppressive bone marrow transplant patient would want to have, it is much better news than what both myself and Mike had initially thought. Praise the Lord! We are leaving the hospital with a lot more meds that we need to give Ella Joy 4 times a day, but we are so thankful that we now know the source of her recent sickness.

We will be able to leave the hospital and go home soon!

Please continue praying with us as each day
is a new one that we ask God to protect Ella Joy against any viruses, bacteria, germs, and as always that she would truly have zero cancer and negative mrd. Thank you so much our prayer warriors!

“Blessed be the Lord, my rock, who trains my hands for war, and my fingers for battle,”
– Psalm 144:1

5-8-2018 Tuesday
Day +312

**Update**

Thank you so much for storing up prayers for Ella Joy. Last night was a whirlwind. Ella Joy’s blood pressure was dangerously low and her heart rate was extremely high. Even with 2 boluses they could not get her blood pressure up. They had to add a pressure bag to the second bolus to speed up her fluid intake. After hours of trying to lower her blood pressure, they sent an ICU supervisor in to evaluate Ella Joy to possibly take her in the event they could not get her blood pressure to rise. Ella Joy also needed emergency doses of hydrocortisone steroids.

When they started Ella Joy on antibiotics, I told them she had allergies to many in the past so they needed to monitor her and be prepared for an allergic reaction to vancomycin. Around 2am in the morning they decided to give her chest x rays and she woke up with chest pains and her head was painfully itchy. No one realized this was an allergic reaction. I had to ask for emergency Benedryl for her when we were getting admitted on the oncology floor early in the morning. Ella Joy had to get 2 IVs placed in her arm because of all the risks involved with getting boluses, receiving vancomycin, and needing additional meds. It was so difficult to see her screaming on the top of her lungs, so tired and in so much pain.

Although her urinalysis test was normal in the ER, I noticed Ella Joy’s urine did not look normal. There were dark foreign objects in it. After they tested a sample, we found out she has leukocytes and blood in her urine and they do not know why. Ella Joy’s bicarbs dropped and her sodium was low. She was dehydrated and had hypertension. Her ketones were also abnormal. We are still trying to get answers. Please pray that as we continue to get evaluated that Ella Joy’s medical team would have wisdom and discernment to know what to do for next steps. Please pray that her medical team would be knowledgeable and quick witted in case of emergencies. It was scary that in the midst of all the doctors and nurses we interacted with in the ER, I was the only one who realized Ella Joy’s chest pains and itchy head were symptoms of an allergic reaction from the vancomycin.

Right now, Ella Joy is extremely exhausted. She did not get much rest in the midst of pain and tears, pokes and procedures in the ER.

Please continue praying for answers and that Ella Joy would be well enough to come home soon. We cannot thank you enough for loving Ella Joy with your prayers rising like Psalm 141:2 incense to our Heavenly Father.

5-7-2018 Monday
Day +311

Please pray for Ella Joy, we are rushing her to the ER at Luries. She has a high fever and her stomach has been in so much pain. She has not had an appetite today and has been extremely lethargic. These symptoms are very similar to when she relapsed in cancer. We need your prayers Saints of God!

*Update*

4-30-18 Monday

Day +304

Thank you for praying for Ella Joy this week!  We got a room at RMH Praise the Lord!

One thing Ella Joy’s oncologists told me is that due to the extremely high doses of chemotherapy, total body irradiation, and cranial radiation she has gone through, it is not uncommon for children who have gone through all of this trauma to the brain to have problems thinking clearly, difficulty managing tasks previously found easy, poor memory, confusion, personality changes, headaches, ototoxicity, and triple the risk of brain cancer.  They told me this usually happens in the 2nd year post transplant.  Please pray with me that Ella Joy would continually make connections with her brain.  Practicing the things she knows, and making connections to learn new things.  Please pray that she would have plenty of opportunities even over the summer to exercise her brain power so that despite going through so much damaging chemotherapy and radiation, that God would continue to protect her brain and mind.

In addition to exercising her mind, her body has taken a toll too.  Please pray that she would be able to regain endurance and stamina that she once had before relapse and transplant.  She is able to run around and play, but after a while, she gets tired and needs to take a break.  If we are going to the park, or walking a further distance, I always try to bring her wheelchair, because I never know when she will be too exhausted to walk back.

Ella Joy is able to be outside for some time, however, we need to constantly be sure she has sunscreen on and that she gets shade when it is very sunny.  Exposure to the sun can cause GVHD to flare up again.  Unfortunately, this is something she will struggle with for the rest of her life.  Please pray we would be prepared to apply and reapply when necessary.

Please pray for our next appointment which will be on 5/21/18 Monday.

And as always please pray that although her odds of relapse are higher this time around, that she 100% would have negative MRD and zero cancer.  Please pray all cancer cells would be melted away, never to come back.

“But let all who take refuge in you be glad; let them ever sing for joy.  Spread your protection over them, that those who love your name may rejoice in you.” – Psalm 5:11

4-9-18 Monday

Day +283

Thank you for your faithful prayers for Ella Joy! RMH was full, and we did not get a room there, but thanks to the Changs we were able to get a hotel near Luries. Today’s appointment went well, but as Ella Joy is still tapering off tacro a slow 5%, her magnesium level was lower than usual, and her oncologist suggested to decrease her mag to half the dosage. I was not sure if this move made sense, but I am always eager to decrease her meds. Please pray that her magnesium levels will increase as we continue her tacro taper and decrease her dosage of magnesium. As we get closer to Ella Joy’s one year post transplant mark, we made the decision to do all her one year tests and procedures at Luries instead of going back to Seattle. This includes bone marrow aspirations, blood tests, biopsies, pulmonary function tests, eye exams, oral exams, nutritional evaluations, and growth and development studies. Please pray that Luries would be able to consult with SCCA and that together they would have a solid plan for Ella Joy’s one year tests and procedures. We need your prayers that everything would run smoothly, and that we would get accurate results and findings.

Ella Joy still has moments when her legs hurt, or when she needs to rest or use a wheelchair because she is tired from walking. Please pray that God would give her strength to fully recover and at times when she is weak, that He would give her that extra supernatural boost of energy to be able to go back to her full stamina.

Another prayer request is that Ella Joy continues to have stomach pains and nausea especially when I give her morning meds. Please pray that she would get to a point that she will not need daily doses of Zofran.

Please also continue praying for Ella Joy’s ferritin levels to increase. This is another concern as her one year evaluation approaches.

Our next appointment is scheduled for April 30^th. Mike’s work trip was rescheduled so that he was able to be with us this week, but he is currently scheduled to be away for Ella Joy’s next appointment. Please pray that things would work out so Mike would be able to be with us for our next April 30^th appointment. If not, I will have to find a ride for us on Sunday night, and Monday afternoon, and if RMH once again does not have a room for us, I will need to make arrangements for myself and the kids … it is a lot to do by myself … we need your prayers that God would orchestrate all things to work out perfectly!

Last year, when Ella Joy celebrated her birthday in the Seattle Children’s Hospital, I knew she was so bummed because we had to cancel her birthday party that we had already planned out for months. I told her that for her next birthday, I would make sure we had a big party for her! I guess I didn’t know about her one year isolation rule at the time, because when she turns 9 this month, she will still not be able to have a big birthday party! Although she might have to wait one more year to have a birthday party with her friends, I know for sure there is something more meaningful than cupcakes and cakepops … something more wonderful than presents and birthday decorations, and something far more powerful and lasting than a birthday party … it is the gift of prayer. On April 21^st, I would like to ask you to give the gift of prayer for Ella Joy. Please pray that she would truly have zero cancer and negative MRD. Please pray that there would be no traces of cancer hiding anywhere in her body.

The voice of the Lord is over the waters;
the God of glory thunders,
the Lord thunders over the mighty waters.
The voice of the Lord is powerful;
the voice of the Lord is majestic.
The voice of the Lord breaks the cedars;
the Lord breaks in pieces the cedars of Lebanon

– Psalm 29:3-5

When I was at the library, I started reading the book “The Case for Hope” by Lee Stobel. I loved reading that the cedars in Lebanon can grow up to 30 feet in diameter and rise as high as a 12 story building. But in the verse above, David was saying that a mere whisper from God is enough to instantaneously splinter those towering trees into kindling!

I would like to add my own contribution that a mere whisper from God is enough to instantaneously eradicate any traces of cancer hiding in Ella Joy’s bone marrow, spinal fluid, or anywhere in her body! Amen!

Then, after describing God’s incredible power, comes this verse, “the Lord gives strength to his people; the Lord blesses his people with peace.” – Psalm 29:11.

Thank you so much for praying with us and believing that a mere whisper from God is enough to eradicate her cancer. That He would continue to provide strength to Ella Joy.   We have so much to be thankful for, and we appreciate all your prayers!