Please pray for Ella Joy. She just threw up her tube out of her stomach again. I just replaced it and checked her placement. Asaph is just getting over what we believe is the stomach flu and he was throwing up frequently since Christmas night. Please pray that God would give her extra grace and protection over her body. It was so hard to see Asaph so miserable and nauseous and we are so thankful it looks like he is just getting over it, but for Ella Joy it could mean an emergency visit to the ER or inpatient stay. Please pray!
“Hear, Lord, and be merciful to me; Lord, be my help.” – Psalm 30:10
Please pray for Ella Joy, she had blood in her stool this morning.
We truly needed your prayers this week! Ella Joy was nauseous and threw up the last two mornings. She also had tummy pains. I was instructed to give her 2 enemas (one Sunday night, and one this morning). They did not go very well. Ella Joy was screaming in pain, and we had to cut it short. She had to fast through the afternoon because her flex sig and upper endoscopy were after her labs and clinic. She had to get poked 2X because no one thought of putting an order in for an IV, and instead she got her lab drawn through phlebotomy, and then after anesthesia, she got another poke for an IV. Her hands are all bruised up from getting poked every week. Please pray that they would continue to be able to find usable veins for these upcoming weeks.
We will get the results from her upper endoscopy and flex sig sometime this week, however, at first glance, our GI physician told us that if there was any GVHD, it might be microscopic. He did notice redness in her stomach area, but will only know what is causing her stomach pains and nausea after the biopsy is examined. Although there is still a chance it could be GVHD, we are very thankful that it could be something else and treated without having to go back to the three steroids she was on. Please pray that the GI team would have wisdom and knowledge to know exactly how to treat Ella Joy.
Out next clinic/labs will not be until January 4th Thursday. Please pray that things would go smoothly, especially since we are skipping more than an entire week of labs/clinic.
Please pray that Ella Joy would no longer feel nauseous or have tummy pains.
This week, her potassium was low. Please pray that it would rise to normal levels.
Today was a long day of clinic/labs, upper endoscopy and flex sig, but we were so thankful that Mike was off work, so we could team up and get everything done.
Thank you so much for your constant prayers for Ella Joy.
The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him. – Psalm 28:7
Thank you so much for your never ceasing prayers for Ella Joy and our long day of appointments today! We were not able to stay at RMH because they did not have any available rooms! It was a huge disappointment because they have 2 isolation floors that are designed to accommodate for kiddos like Ella Joy who have gone through BMT. A huge thanks to the Chang family for hooking us up with a hotel close to Luries! Please pray that for future visits, God would open up rooms so we can stay at RMH. We had a full day starting with an echo, then labs and clinic, and then we had a late afternoon appointment for seeing a GI expert. He absolutely agreed with me that it would be more beneficial for Ella Joy to have a flex sig and upper endoscopy so we can find out if it is truly GVHD. Dr. Bass confirmed that Ella Joy’s PFT seemed to look normal. When I reviewed the PFT, I could not see anything that indicated that there were problems. When Dr. Morgan told me Ella Joy needed to see a Pulmonary specialist in Lake Forest, I was puzzled. The day after we stopped giving her dapsone, her oxygen shot up immediately to 95-97%. She told me Ella Joy would absolutely not undergo anesthesia unless a pulmonary specialist cleared her. Therefore, we are going to Lake Forest this Wednesday to see a pulmonary specialist. A huge thanks to the Park family for housing us so we can make it to the appointment in a timely fashion.
This morning, Ella Joy was once again nauseous and her stomach hurt when I gave her morning meds. We also had to switch out her NG tube today, and it was pretty rough on her as she was choking and spitting up. I am not sure how I got a hold of one good corflo ng tube, but somehow by God’s miracle, I found one in my medical supplies. We used this one good one I have this morning. Please continue praying that things would work out with insurance. For some reason, we cannot find a medical supply company within network that carries these particular 10 French Corflo ng tubes.
On Monday Dec. 18th, Ella Joy will have clinic and labs, and she will also have a flex sig and upper endoscopy. The last time she got these in Seattle, her stomach was full of air, and she was in a lot of pain. Please pray these procedures would go smoothly, and that she would not have as much pain this time around. I am extremely anxious to see if she truly has GVHD. I told Dr. Morgan, my mother’s instinct tells me that she does have it again. But I pray I am wrong because I do not want to go back to the steroids again. If we do need to go that route, I am praying that B&B would be enough, instead of having to go back to prednisolone.
Please pray for Ella Joy as she is noticing the stretch marks that take over most of her legs and body. She doesn’t like the way they look. I try not to make a big deal about it, and just tell her that because of the prednisolone, this med causes people to gain weight quickly, and as a result, her skin expands causing these marks. I know she is starting to notice her weight gain and body image more and more. Please pray that this would not dampen her spirits. Even when her hair fell out for the second time, I tried to remind her that true beauty is not in a person’s hair or physical appearance.
Please pray that Ella Joy would truly have zero cancer and negative mrd. The chances of relapse or secondary cancer are against her at 70%. Please pray that Ella Joy would be able to beat these odds. If she does have GVHD again, possibly the positive is that there is graft versus leukemia at work as well. We absolutely do not want Asaph’s cells attacking Ella Joy’s cells, but if this is the case, then I pray that Asaph’s cells would be attacking any cancerous cells that are hiding in her body.
As Sally Lloyd-Jones would say, Thank you so much for your “Never Stopping, Never Giving up, Unbreaking, Always and Forever Love” that you have shown us through your prayers for Ella Joy to our Father.
The Lord appeared to us in the past, saying: “I have loved you with an everlasting love; I have drawn you with unfailing kindness.” – Jeremiah 31:3
(original post) 12-4-17 Monday
Day + 154
Thank you so much for praying for Ella Joy’s long appointment this morning! A special thanks to Sunny for sacrificing her study time to help watch Asaph! It was a long day of labs, clinic, CT scans, and pulmonary function testing. Since Dr. Morgan refused to call SCCA when Ella Joy was in the ER, I decided to do it myself. After telling SCCA as much information I could, they suggested she get a methemoglobin level since she had been on dapsone for 7 weeks. We had switched from Bactrim to dapsone in September because her platelets were trending downwards. A simple methemoglobin lab would help us see if the dapsone was the culprit for low oxygen levels. I emailed Dr. Morgan, asking if we could draw a lab for methemoglobin. She told me that she would not and that we would have seen it already with dapsone. I asked my pediatrician to call Dr. Morgan, but both times she called, Dr. Morgan made it very clear that she would not be ordering this lab. I even resorted to calling Luries’ patient-relations and told them that Dr. Morgan refuses to give Ella Joy a methemoglobin lab draw. My reasoning was that the institution that did Ella Joy’s BMT (SCCA) strongly suggested it, and since she was already getting poked with an IV and getting several lab draws, this would simply be one more lab draw. This time, Dr. Morgan responded, “ I discussed this with one of our Hematologists who is a national expert on hemoglobin and blood diseases…. Neither my consultant nor I see a clinical indication for this test.” Even after this response, I kept asking Dr. Morgan for this methemoglobin lab draw. I told her that if anything, it would give us peace of mind, and if it is as she said not the cause, then we could check that off the list of possible causes and move on. After Ella Joy got her lab draws, we waited a couple of hours and Dr. Morgan was late in seeing us. I was getting anxious because we were an hour late for our CT scan. The first thing Dr. Morgan says to me is, “You were right.” After several attempts to ask for this methemoglobin level, we found out that dapsone indeed had caused her 02 to drop, and we did need to switch her back to Bactrim. I asked her, “Dr. Morgan, I had asked you for this methemoglobin level so many times this past week, and you always refused. What changed your mind? She responded, “you wouldn’t stop asking me, so I just decided to do it.”
One of my favorite parables comes from Luke 18:2-5, “In a certain town there was a judge who neither feared God nor cared what people thought. And there was a widow in that town who kept coming to him with the plea, ‘Grant me justice against my adversary.’ “For some time he refused. But finally he said to himself, ‘Even though I don’t fear God or care what people think, yet because this widow keeps bothering me, I will see that she gets justice, so that she won’t eventually come and attack me!’”
I absolutely love verse 7 & 1, “And will not God bring about justice for his chosen ones, who cry out to him day and night?” Jesus taught the parable of the persistent widow to encourage us to always pray and never give up!
Thank you so much for being that persistent prayer warrior that always prays and never gives up in lifting up Ella Joy in prayer! I know some of you were even praying for Dr. Morgan too!
We have lots of prayer requests this week:
This morning before we headed to Luries, Ella Joy was not only nauseous again when I gave her morning meds, but her stomach was in so much pain I gave her an emergency dose of dilaudid. I have not given her dilauded since we were in Seattle before we started her on prednisolone. I knew this in the pit of my stomach, and even Ella Joy confirmed that she had not had this kind of nausea and pain since we confirmed she had GVHD. Please pray that her nausea and stomach pains would subside. I am praying that we will not have to go back on steroids again. However, if this is what it takes to control her GVHD again, please pray that we would be ready for even more weight gain, leg pains where she many times cannot even walk, high blood pressure, high cholesterol, and even more meds to alleviate the negative side effects of hormones. At this point, Dr. Morgan is reluctant to order an endoscopy because under anesthesia, Ella Joy’s oxygen might be too dangerously low. Please pray for wisdom so she would know the right timing for every procedure that needs to be done, for next week, this includes an echo, and CBC, CMP, Mg, Phos, Tacro level, and G6PD.
Please pray that as we are stopping dapsone and going back on Bactrim that Ella Joy’s oxygen levels will start to rise. Currently, we are seeing her levels in the mid to upper 80s.
Please pray that the communication between Luries and SCCA would be smooth and efficient. Dr. Morgan told me that she would rather be the one talking with SCCA than me. I agreed, but reminded her that since she refused to call SCCA, I did it myself. Dr. Morgan told me that she would not be calling SCCA for every little thing, but I told her that GVHD and low oxygen levels were not little, but rather big deals that merit calling SCCA. My NP told me that it is impossible to reach the attending at SCCA, and that they end up talking to so many different people. I called SCCA and told them what my NP said. They told me that Dr. Morgan nor my NP ever called them. I thought that was very interesting. By the end of the meeting, Dr. Morgan admitted that she had not called SCCA at all. Please pray that my Luries’ oncology team would see value in consulting with SCCA for the benefit of Ella Joy.
Please pray God would give us wisdom for the next steps we will take after we get the results of the CT scan and pulmonary function test. The man who administered the PFT told me that it usually takes an hour, but Ella Joy told him, “Don’t worry, I had a lot of practice in Seattle, I can do it in half an hour!”
Please pray that the PT that Ella Joy is getting 2X a week would be effective and that she would get the therapy she needs.
Please continue praying that insurance will cover the CorFlo NG tube. I believe we found a medical supply company that can special order this tube. The tricky part is getting insurance to approve different medical supplies from 2 different companies. Please pray that it would all work out in the end with the correct paperwork, codes, and authorization.
Please pray that next week, things would go smoothly, and that there would be no complications with Ella Joy’s health. Mike will be going on a work trip out of state, and with myself home with Ella Joy and Asaph, please pray with me that we will not have any medical emergencies.
We cannot thank you enough for the gift of prayer. It means so much to our family that you are persistent in prayer for Ella Joy. Praying that she would truly have ZERO cancer and NEGATIVE mrd. That despite the odds that she has a 70% chance to relapse, we pray that God would truly eradicate her body of any trace amount of cancer that is hiding in her spinal fluid, bone marrow, or any place in her body. We appreciate you, our persistent prayer warriors!
and now, a throwback to a couple of my favorite mini prayer warriors: