Please pray for Ella Joy as her blood pressure has been too high these past couple of weeks. She has been on enalapril, however, even on this blood pressure medication, her blood pressure is still high. Please pray that God would help her blood pressure to decrease even as she continues to take steroids. Ella Joy is also lacking in phosphate, so she is taking phosnak. We also found out she is lacking in magnesium so she is now taking magonate 3 times a day now as the tacrolimus can strip her of magnesium. In the next couple of days, we will completely take the magnesium out of her night IV fluids. Lastly, after her labs, we found out her electrolytes have been low. Please pray that with all the meds and even more additional meds that Ella Joy is taking, that God would help her body to get the balance she needs. The Steroids immediately helped her nausea and belly pains, but continue to cause body pains and fatigue especially in her legs, feet, hands, shoulders and hips. Ella Joy continues to have GVHD. Her hands are lacey and blotchy red, and due to higher levels of tacrolimus, her hands have been shaky.
She recently got an EKG, and has another scheduled for the following week. She also just had a spinal tap and bone marrow aspirate. On the 20th, Ella Joy will get a dexa scan to measure her bone density. Our day 80 will be on the 21, and the bmt team will be taking pictures of Ella Joy’s skin to have a baseline for GVHD. On the 25th, Ella Joy will once again take her pulmonary function testing. On the 27th, Ella Joy will have a 3 hour neuro pysch test. This is something we wanted before she had her transplant, but we were only able to get it scheduled for after her bone marrow transplant. There are many other appointments we need to go to as we are approaching day 100!
Please pray for God to continue protecting Ella Joy’s body as Mike will once again be going on a work trip next week. Please pray that Ella Joy would not get any fevers (she was close the other day!) It would be very difficult for me if she needed to be inpatient. Please pray that I would be able to take Asaph to school and also take Ella Joy to her appointments, even when the times are overlapping. Taking care of Ella Joy and making sure she is getting to all her appointments (we sometimes have 4-5 a day), and making sure she gets all her meds throughout the day is challenging in itself, but then I have to make sure to take Asaph to the bus, and pick him up, and make sure he is also cared for too. Doing this all on my own this upcoming week, I am going to need storehouses of prayers!
Thank you for being our faithful prayer warriors! We cannot thank you enough!
Sometimes when I think about this line from Job’s Song: “Been broken, put through the fire, felt the heat melt all my strength away…”
I remember this verse:
“He gives power to the weak and strength to the powerless.” – Isaiah 40:29
9-5-17 Tuesday (original post)
As September is all about going gold for Childhood Cancer Awareness Month, I wanted to share some golden Bible verses that I have been meditating on.
“Pure gold put in the fire comes out of it proved pure; genuine faith put through this suffering comes out proved genuine. When Jesus wraps this all up, it’s your faith, not your gold, that God will have on display as evidence of his victory.” – I Peter 1:7
When we found out that Ella Joy relapsed, it was our worst nightmare come true. However, in the midst of leaving everything behind to seek the best treatment and transplant clinic for Ella Joy, we were so touched and encouraged by so many prayer warriors, and so many friends who wanted to show support and love for our family. We pray that it would be our faith that would point to God and show his healing power. 90% cancer blasts to 1.1% to zero and negative.
“But He knows the way I take; When He has tried me, I shall come forth as gold.”- Job 23:10
Ella Joy has been through so much from the first time she was diagnosed with stage 4 non-Hodgkins t-cell lymphoma cancer, having gone through chemotherapy for 2 and a half years and even spinal taps while being awake! All the ER visits for fevers and even the painful erwinia shots in her legs, she would have to revisit when she relapsed. Only this time, it was stronger chemotherapy 3X as well as cranial and full body irradiation conditioning before her bone marrow transplant. The GVHD and mucositis and the extreme nausea and belly pains would go away but only after taking 3 hormones that caused her leg, foot, hand, shoulder, and hip pains, weakness, and fatigue that would confine her to a wheelchair at times. Too high of a tacrolimus level caused her hands to be shaky, and while tapering her off prednisolone, the GVHD caused her hands, arms, back and feet to become red and lacey and blotchy. Although she has been through so many pains and much suffering, it is our prayer that she would come forth as gold.
“And I will bring the third part through the fire, Refine them as silver is refined, And test them as gold is tested They will call on My name, And I will answer them; I will say, ‘They are My people,’ And they will say, ‘The LORD is my God.'” – Zechariah 13:9
In the refiner’s fire, we pray that we could come out stronger and more faithful. The Lord is our God!
Personally, I never wonder why Ella Joy was diagnosed with cancer and why she relapsed. Before I ever ask God why, I would need to ask Him why He divinely made Asaph a perfect match for Ella Joy. I would have to ask why He healed her of cancer a 2nd time to have zero and negative. I would have to ask Him why she did so well in the hospital post-transplant that she got to leave on day 22. I would have to ask Him why he gave us so many amazing prayer warriors to fight with us in prayer as Ella Joy battled for her life a 2nd time and went though her bone marrow transplant.
This month, please lift up a prayer for Ella Joy and other golden warriors who have battled cancer, or are currently battling cancer, or have fought the good fight and are now with our Lord and Savior. Please pray Job 23:10 prayers that every cancer warrior and their families would come forth out of our Refiner’s fire as gold.