Deep into the love of God like a nail

***Update***

2-19-18 Monday

Day +234

We appreciate your continual prayers for Ella Joy! This week was a challenging one. We found out last minute that Ella Joy needed to have an endocrinology appointment added on to our lab and clinic appointment. I was told by our stem cell APN that endocrinology would call me with instructions for this appointment. When no one ever called, I had to call the on-call oncologist who was reluctant to help, but eventually called an endocrinologist who told him what they typically do for hydrocortisone levels. I was not sure if this was the protocol for Ella Joy, but I held her hydrocortisone doses for Sunday afternoon and Monday morning. It ended up being the correct instructions but we told them that we should not have to be calling and searching for the instructions for our appointment, but rather, we should be informed. Praise the Lord, it looked like Ella Joy’s hydrocortisone levels were looking good! So we are slowly tapering her dosage, and on March 5^th, when we have our next lab, clinic, and hydrocortisone level, we will see if she will get an additional taper. Ella Joy will have a fasting lab because they will also be checking to see if her cholesterol levels are within normal levels.

Because Ella Joy was coughing and seemed to have flu like symptoms, she got a nose swab. It came back negative! We were so thankful to God for protecting her! Please pray that He would continue to guard her body against any viruses or germs.

Please pray for effective communication with our new providers, the stem cell team. It was extremely difficult to get a hold of them. There was a lot of lack of communication and as a result, we had no idea what we were supposed to do in preparation for our endocrinology appointment.

A couple of weeks ago, I had asked the stem cell APN to add team members from the stem cell team to Ella Joy’s mychart. When it never happened, I asked why and she told me that after switching providers they were supposed to automatically appear in the mychart. After a month, I told her I do not think the mychart will magically add new names, and maybe we should contact someone to help add the oncologists and nurses. Please pray that the stem cell team would be more proactive and helpful. When they are failing to do things like effectively communicating instructions for upcoming appointments, and updating the mychart, it makes me wonder how quick and efficient they would be if Ella Joy came in with a very serious emergency.

Mike will once again be going on a work trip in a couple of weeks. Please pray that Ella Joy would be well and would not have to go to the ER.

“Look to the Lord and his strength; seek his face always.” – 1 Chronicles 16:11

2-18-18 Sunday

**Update**

Tomorrow in addition to labs and clinic, Ella Joy will also have an appointment with the endocrinologist at 1pm on Monday. When she was in Seattle and was battling GVHD, she needed to go on steroids. The high dosage of prenisolone caused her adrenal glands to “fall asleep.” Since then, she has been needing two doses a day of hydrocortisone, and even an emergency needle in case of an accident or severe injury. Now that Ella Joy has tapered off all her of steroids, including prednisolone, budesonide, and beclomethasone, we are going to see the endocrinologist again to see if her adrenal glands are working again, and if we can taper off hydrocortisone. Please pray this visit would be a smooth one, and that we would be on the right track. We are so appreciative of all your prayers! Thank you so much!

*Update*

2-5-18 Monday

Day +220

Today was our first appointment with the stem cell team. We appreciate all your prayers! The IV was especially challenging for Ella Joy this morning. She was screaming and crying off the top of her lungs. The nurse was able to find a vein on her arm, but because she was so used to getting poked in the hand, she was uncontrollably wailing. The nurses wanted to keep the IV in, but I asked them to remove it after labs. Unless Ella Joy is needing blood, more labs, or has a CT scan, I would rather them use the butterfly and draw labs than use an IV. Our new stem cell oncologist Dr. Chaudhury noticed a few dry patches on Ella Joy’s skin. Mostly on her legs and back. She was not sure if this was GVHD, but we have to put aquaphor on it for now and keep a close eye on the pactches. When we went over Ella Joy’s meds, we decreased her dosage of magonate, omeprazole, and calcium carbonate which is always a victory to intake less drugs.

Our next appointment is Feb. 19^th Monday. Please pray that we would continue to keep Ella Joy away from germs. Every once in a while we will have her put on a mask with hand sanitizer around her neck and go out, but we keep those moments for rare and special occasions. I cannot believe we only have 5 more months to go until we are out of isolation!

Ella Joy continues to have stomach pains and nausea. There was almost a good several days where she seemed to be fine, but her stomach always feels a certain way especially after her morning meds. This is when she takes the majority of her meds.

Mike is going on another work trip out of state tomorrow morning. Please pray that Ella Joy would be in good health and that we would not have to go to the ER while he is away.

Corrie Ten Boom once said, “The wonderful thing about praying is that you leave a world of not being able to do something, and enter God’s realm where everything is possible. He specializes in the impossible. Nothing is too great for His almighty power. Nothing is too small for His love.”

Thank you so much to all our friends and family who never give up on praying for Ella Joy.

“Whatever you ask in my name, this I will do, that the Father may be glorified in the Son. If you ask me anything in my name, I will do it.” – John 14:13-14

1-22-18 Monday

Day +206

Thank you all for your continual prayers for Ella Joy! This week we were once again turned away from RMH because of lack of rooms, but last minute, a room opened up! Praise the Lord! Please pray that we would be able to get a room on Feb 4th for our next appointment for clinic and labs on Feb. 5^th Monday.

This week, once again Ella Joy’s blood pressure was low for her age, so we are going to continue decreasing her dose of enalapril or epaned. Ella Joy’s triglycerides are down treading, so we will need to redraw this lab in addition to her ferritin, T and B cell subsets, and protein/Creatinine. Please pray that she would be brave when she is poked for these labs and that everything would go smoothly.

It was an unexpected surprise today when I was told that Ella Joy would now be in the care of the stem cell transplant team at Luries. Dr. Morgan has been out on medical leave, and we do not know when she will be back. Since Ella Joy is at higher risk because she is on tacro which is an immunosuppressive drug, they felt she needed to be seen by the stem cell transplant team during the remainder of her tacrolimus taper.

Please pray that the stem cell transplant team at Luries would be on top of reading all her paperwork and files from Seattle Cancer Care Alliance where Ella Joy got her bone marrow transplant. Please pray that they would have wisdom and discernment to know what to do with Ella Joy in the event that a situation arises. I am praying that we can keep Ella Joy away from germs and viruses so we do not have to go back to the ER, but please store up prayers for the team now so that they would get familiar with Ella Joy and her case files so she can get the best care possible.

These days, we are so thankful that the only recent challenges have been nausea and tummy pains when Ella Joy gets her meds in the morning. It seems to go away after I give her Zofran. Please pray that stomach pains and nausea would altogether go away soon.

Mike is going on three different work trips (out of town, out of state, and out of country) back to back to back starting the end of this week. Please pray that there would be no complications as I will be in isolation watching Ella Joy and Asaph by myself. Please pray Ella Joy will be well enough to stay out of the ER.

We truly are so thankful for your faithful prayers for Ella Joy! As we continue our year of isolation, please pray that God would protect Ella Joy from catching any germs, viruses or sicknesses. Her little body has been through so much with all the high dose chemotherapy, cranial radiation and total body erradiation, and the bone marrow transplant that we are very thankful for this time we can stay home and she can slowly recover.

Timothy Keller wrote, “There is a purpose to suffering and if faced rightly, it can drive us like a nail deep into the love of God and into more stability and spiritual power than you can imagine.”

Some of you have been asking how Ella Joy is doing. How is her livelihood, and how are her spirits? How is Asaph, and how is he doing? I thought I would show you and answer that question with this video …

Ten looks at Christ

1-4-18 Thursday

Day + 187

Ten looks at Christ

Thank you so much for praying for Ella Joy when she last threw up her tube from out of her stomach. There was another scare on New Year’s day, both her legs started hurting and she was crying in pain. She was unusually tired and she had a low grade fever. She was also starting to have night terrors, screaming, and moaning again. We were so afraid it was signs of relapse that we contacted Dr. Morgan. Because of the holidays, we were out of clinic for weeks and had not done her blood work for some time. I truly believe God heard your prayers because after Ella joy threw up right before New Years Eve, she seemed to get better and only struggled with tummy pains and nausea. Unfortunately, Mike seems to have the stomach flu now. Please pray that especially Ella Joy will be protected from getting it. Now that Asaph is over it, please pray he also would not get it, and please pray that I would not get it so I can continue to take care of Ella Joy with all her meds and Asaph. Finally, please pray that Mike would quickly recover so he can feel better soon and get back to work.

This morning, phlebotomy was especially challenging for Ella Joy. When she was poked for the first time, the blood came out, but then stopped and we only got 2 tubes worth of blood. She needed to be poked in her finger to get the rest of her labs. When we got the results, her CBC clotted, so she had to be poked a third time. She chose her finger again, so her other finger got poked and squeezed for the CBC. Please pray for Ella Joy’s veins, and that they would be able to locate and use her veins for future labs. Today, although they could see her veins with the light, they could not feel her veins. Each week, the phlebotomists have less to work with as she is all bruised from weekly pokes.

Ella Joy’s blood pressure was low this week. Please pray as we decrease her enalapril/epaned, that her blood pressure would come up to normal levels. We are starting her 5% tacrolimus taper. Please pray that it would be an effective taper, and that there would be no signs of GVHD flares as we start this slow taper.

A special thanks to RC for driving us home from RMH after our Luries appointment! We are so thankful for a community of friends and family who have been so incredibly supportive to us! We were told it did not look good for getting a room at RMH, but last minute, a room opened. Please continue praying that rooms would be available for us for the 2X a month we need to go to Luries. The isolation transplant floors are absolutely ideal for Ella Joy. We are so thankful each time we are able to stay so close to the hospital.

Instead of weekly, we are now going to go to Luries for clinic and labs every two weeks. This is great because it means one less poke for Ella Joy’s labs. On the other hand, not getting her blood work for 2 weeks, we are not able to see what is going on with her body and meds. Please pray that she would remain stable for the 2 weeks between visits so we will not have to take her to the ER.

“Ah, Sovereign Lord, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you.” – Jeremiah 32:17

Please pray that for every sentence I share with others about cancer, that I would share ten sentences about the amazing work God has been doing, and how he has blessed our family in so many different ways! Just like McCheyne said, “for every one look at your sins, take ten looks at Christ.” and Piper, “You will waste your cancer if you spend too much time reading about cancer and not enough time reading about God.” I can memorize all of Ella Joy’s tubs of meds and even how many ml of each as well as all of the chemotherapy meds she has been on, and all the procedures she has had, but I cannot remember the last time I memorized a meaty Bible verse. Ella Joy has been the one who has been reminding me to do our daily devotionals together! Please pray that we would continue to grow in His Word even as we stay home each day.

And as always please pray for zero and negative. Zero cancer and negative MRD. Thank you for fighting alongside us! We appreciate you all so very much!