We want to thank you all for never ceasing in prayer for Ella Joy! We have some praise reports as well as some on-going and new prayer requests:
We praise the Lord that the prednisolone has helped her GVHD. The moment we started it, her extreme nausea and tummy pains caused by graft vs host disease went away. However, there are many side effects of pred that require even more meds. Her blood pressure has been too high, and we have increased her enalapril 3X, tripling her doses, and even now, it has been ineffective, so she needs a new med amlodipine as well. Please pray that these two meds with increased doses will help her blood pressure to decrease. In addition to her high cholesterol, she was also lacking in phosphate, so she has been on fish oil and phosnak. Today we found out that her magnesium is low, so she will need to have additional doses of mag 3 times a day.
One praise report we wanted to share is that the fluid as well as the nodules in her lungs have seemed to clear up! So Friday will be her last dose of voriconazole. However, her platelets have been trending down, and the BMT team seem to think it might be med related because she is on so many drugs … the Bactrim could be the culprit. So, instead of Bactrim, Ella Joy is taking dapsone.
After the CT scan, we also found out that Ella Joy has pericardial effusion or fluid around her heart. Please pray that this would simply go away after time in the same way the fluid in her lungs have.
Please pray for us. At this point her meds should be decreasing, but instead are ever increasing. Although we are tapering her prednisolone, there is a cumulative effect and the pred has been affecting her levels and therefore, we have increased meds. Ella Joy’s weight having been on pred is too high. She has been eating way too much kalbi, rice, mini cinnamon waffles, mini red wax babybel cheese, and egg white delights from mcd! Please pray that as we taper her off pred. she would come back down to her ideal healthy weight. She looked at herself in the mirror and told me she didn’t like what she saw. I tried to explain to her that it is normal to have a moon face and gain weight with pred. She is still my sweet beautiful little lady. And now that she is super robust, and weighty, she is just so good to hug!
Tacrolimus is one of the most crucial time sensitive drugs Ella Joy needs to take. She must take large volumes of water with it, as it can cause liver damage. Ella Joy has decided that although she does not need her tube feeds for calories currently as the pred has given her appetite a huge boost, she wants to keep it for all the meds she needs to take as well as for water to stay hydrated. After her pred is tapered off fully, will be the test to see if she can continue eating on her own, or if she will need her tube feeds. Because Ella Joy has so many meds, there are some that need to be given 4 times a day, 2X a day, some we give with icecream, some with mango juice (this med melts plastic but we have to give it to her 4X a day!), some meds are refrigerated, some are powder that we need to prepare in small bottles and shake up every single morning and night, and some meds given only on certain days,and some meds need to be held and given later for levels … it is a lot to remember and I have to confess, somehow I forgot to give Ella Joy a dose of tacrolimus in the morning this past week and I called the BMT team, and was so devastated that I had forgotten! This med helps her GVHD which she still struggles with to this day!
Please pray that our transition to Luries would be a smooth one. We are not going to go back to a BMT team, but rather back to her pediatric oncologist. Our prayer is that we would keep Ella Joy so well isolated especially during the flu season so she would not get sick and have to be hospitalized again.
A praise report is that we are looking forward to heading back to Chicago mid October! Please pray for our flight back and that we would have everything we need to help Ella Joy with meds. Like bringing an icepack for her refrigerated meds. In case of a delay, we need to bring all her meds with her. Can you imagine them testing all 30 bottles because they are almost all liquid!
We need to have Ella Joy seen immediately after we arrive in Chicago. Please pray that as there very well may be some changes in regards to her tapering off pred, please pray that Luries would catch all those changes and make the appropriate med alterations as needed.
Mike is going to continue traveling for work even after we fly back to Chicago. Please pray that I would be able to get Ella Joy and Asaph safely to RMH and Luries by myself. Here in Seattle, it has been amazing living walking distance from SCH and a half hour shuttle to SCCA. When we go back to Luries, it will mean long train rides and uber rides.
We are so appreciate of everyone who have been so supportive to our family throughout her first diagnosis of stage 4 non-hodgkins t-cell lymphoma cancer in 2013 to her relapse with t-cell leukemia this past March 2017 to her chemo, radiation, and transplant on July 3rd to even now. We are extremely blessed to have such amazing family and friends in our lives!
Seattle has this very interesting and intriguing society of people who paint rocks and hide them along the walking route to the hospital from RMH. Ella Joy and Asaph have often been very excited finding them. They are fun for the kids to find, and some of them have inspirational words of encouragement, or beautiful intricate paintings. The sun can cause GVHD on Ella Joy’s skin, so we don’t walk anymore post-transplant, however, when we did, Ella Joy and Asaph had their eyes fixated on tree branches and bushes where they would frequently find hidden painted rocks. For me, on our walks to and from the hospital … with many of the daily challenges and struggles, I needed to fix my eyes on the Rock that is higher than I.
“From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I.” – Psalm 61:2
We still need your prayers Saints of God! There are still so many things that could go wrong, and we would like to ask you to continue praying for God’s protection over Ella Joy’s body.