Thank you so much for praying for Ella Joy as we had a full day of procedures and appointments at Luries.
We started with an echocardiogram. It took about an hour, but unfortunately, for some reason, Ella Joy was extremely uncomfortable.
Next was the electrocardiogram (EKG/ECG) which was quick and painless.
We then went to radiology where Ella Joy had to get a bone densitometry, also called dual-energy x-ray absorptiometry, DEXA or DXA, which uses a very small dose of ionizing radiation to produce pictures of the inside of the body (usually the lower (or lumbar) spine and hips) to measure bone loss.
Then, our next appointment, we got to meet Ella Joy’s APN for her STARR clinic. Her oncologist was not available, but hopefully we will get to meet her at our next visit. Some of the concerns that our APN brought up was that Ella Joy still has a high ferritin level (because of all of her blood transplants). We praise God because although her iron levels are still too high, they have naturally decreased without having phlebotomies from the 600’s to 376. We are aiming for 11-320. Please continue to pray with us that Ella Joy can naturally get to this lower range soon. Another concern was her vitamin d level, which was another lab we took for her. Graft versus host disease was also mentioned because the sun can cause GVHD to flare up on her skin. We need to continue to be extra careful to give her sunscreen and shade when we are outside and in the sun.
We also had an appointment to meet Ella Joy’s endocrinologist. She brought up some huge concerns. Ella Joy had the maximum amount of radiation because she had 90% cancer blasts in her bone marrow that had spread to her spinal fluid. Therefore, she underwent total body irradiation as well as cranial radiation. Radiation given to the thyroid gland can reduce its production of hormones. Our endocrinologist told us we need to constantly check Ella Joy’s neck because she is at high risk to develop thyroid cancer because of all her radiation therapy. Please pray with us that God would protect Ella Joy’s thyroid gland, and that she would not develop any secondary cancers. Our endocrinologist went on to say that as Ella Joy gets older, her chances of developing thyroid cancer gets higher. I had to have her repeat that statement as it was alarming to hear. We need to be constantly screening Ella Joy’s pituitary glands. Once again, because of all thetotal body irradiation and cranial radiation, it can cause the glands that control growth to malfunction. As a result, the pituitary gland may not make enough GH, resulting in growth hormone deficiency. We will never know how much taller Ella Joy would have been. Another concern was Primary Ovarian Insufficiency which occurs when the ovaries are not working normally. The hormones that usually are naturally made by the ovaries (estrogen, progesterone, and testosterone) are no longer being produced in normal amounts, and the ovaries don’t release eggs (ovulate) or release them just once in a while. In other words, Ella Joy’s brain is trying to go into puberty, but her ovaries are not producing estrogen. It is very likely she will need hormone replacement therapy (HRT) in the form of hormone patches (transdermal estrogen) and possibly pills. Please pray with us that God would show us another miracle. Although the odds are against her, please pray that she would be able to develop naturally without needing all these medical patches and pills. We know Ella Joy has been hit with just about every chemotherapy including cyclophosphamide which is extremely potent at inducing ovarian failure. Although every oncologist has told us she most likely will not be able to have children, we believe in a God who is greater, and all things are possible in Him! “With man this is impossible, but with God all things are possible.” – Matthew 19:26. Please pray this verse with us!
Another area of concern was Ella Joy’s neurocognitive skills. With all the high dose chemotherapy and radiation after relapse, as well as all the initial chemotherapy she received for over 2 years when first diagnosed, they told me it was very likely for children like Ella Joy to be lacking in executive skills, prioritizing information, and having a decreased speed in learning. This can happen years down the line. Please pray with us that God would continue to protect Ella Joy’s brain. Whether it’s reading, memorizing more digits of pi, playing chess or Monopoly Deal or Five Crowns : ) that she would challenge herself everyday to make connections and learn new things.
Our final appointment was Ella Joy’s pulmonary function test. It was difficult (even I would have had a hard time doing all of the breathing techniques and tests), but she was a rock star and tried her best.
The good news is that when all the labs come back and if everything appears normal, we will not have to go back to the STARR clinic for another year! Praise the Lord! This is huge for us, as about half of Ella Joy’s life has been inpatient, infusion, ER or going to hematology/oncology clinic visits for chemotherapy, spinal taps, bone marrow aspirates, and more procedures.
Our hearts are so full of thankfulness for friends and family who never give up in praying for Ella Joy. We know we have so many prayer warriors who have stood with us in prayer as Ella Joy fought for her life battling cancer twice.
Finally, we wanted to leave you with this verse, as this photo depicts our family standing together, please continue standing firm with us in prayer …
“Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.” – 1 Corinthians 15:58
For this morning’s appointment, we went back to Dr. Morgan, because we are getting ready to enter into the STAR program at Luries. I purposely didn’t schedule an appointment last month because I knew that she would not be getting any more phlebotomies.
Please pray for her 1st comprehensive STAR appointment on August 1st, Thursday. She will be having a lot of procedures and appointments, starting early in the morning with an echo, EKG, DEXA scan (bone density, endocrinology appointment (they will for sure check her thyroid), and a thorough check up to end the long day. Depending on results and findings, there may be more procedures and tests scheduled, and more appointments. Please pray with us that in the few months that Ella Joy is not getting routine labs and check-ups that she would be healthy and that God would protect her body.
We are so thankful that we are not needing to take her to Luries every month anymore, but at the same time, there is always fear of another relapse. Please pray with us that Ella Joy would truly have zero cancer, and that all cancer cells would be eradicated forever. That there would be no cancer cells hiding in her bone marrow or spinal fluid. Thank you so much for taking this journey with us, and lifting up prayers along the way. It means so much to our family. Things look good, and she definitely looks “good.” But we know when Ella Joy relapsed, it was extremely unexpected. Her hair had finally grown out after falling out several times during her first rounds of chemotherapy. She was happily playing with Asaph, and the next day she was so weak and could barely even walk or stand up. The cancer in her bone marrow was so aggressive that by the time we got her CBC, there was 90% cancer blasts in her bone marrow. We always want to have the heart of urgency in praying for her cancer to be done forever. Thank you for praying with us for this very prayer request.
“I call on you, my God, for you will answer me; turn your ear to me and hear my prayer.” – Psalm 17:6
***Update***
2-25-19
Thank you to all of our prayer warriors who have been steadfast in praying for Ella Joy and covering each appointment with stored up prayers for zero and negative cancer!
Our stem cell oncologist told me that Although Ella Joy’s ferritin levels are still too high, she can not be having anymore phlebotomies because it is too much on her body. Therefore, the next appointment will be April 9th, and we will be going back to her initial oncologist. Please pray that she would continue to be strengthened and God would continue to protect her body until then.
Thank you so much! We appreciate you all so much and are encouraged and strengthened by your prayers for Ella Joy and our family.
“He heals the broken-hearted and bind up their wounds … the Lord delights in those who fear him, who put their hope in His unfailing love.” – Psalm 147:3 & 11
***Update***
1-28-19
Thank you to all of you for remembering to pray for Ella Joy!
We appreciate all our prayer warriors who never forget to cover Ella Joy and her appointments with storehouses of prayers!
This week, Ella Joy’s stem cell oncologist was telling me that she was happy that Ella Joy’s ferritin was decreasing each month with the phlebotomies, but that more of these procedures might be more harmful in the long run.
Unfortunately, when the labs came back, her ferritin level for the first time had increased. We were not expecting this. Ella Joy’s levels are still abnormal, and we still need to have discussions with her stem cell oncology team about how this will affect her. Please pray that although it is very rare for iron levels to decrease naturally, that God would protect Ella Joy’s body and help her levels to get to safe and normal levels. Please also pray that Ella Joy would be guarded against all the germs and viruses going around in school and in public places. Her immune system is still compromised, and after getting over pneumonia & RSV, we are praying God would help protect her during this season.
Feb 18th Monday is our next appointment, and we are praying for wisdom and discernment to know the next steps to take for her immediate care. Thank you for taking this journey with us! We are so thankful to God for all your faithful prayers!
“This calls for patient endurance the part of the people of God who keep his commands and remain faithful to Jesus.”
– Revelation 14:12
12-19-18
** Update **
Thanks again for everyone who have been lifting up prayers for Ella Joy. On 12-18-18, yesterday, we went back to the Northwestern regional medical group, and we found out that Ella Joy’s lungs sounded worse. Most likely more fluid in her lungs. Today, we got the results of the swab, and she tested positive for RSV, but she had a temp of 100.0, so we are going to keep her from school yet another day.
Please pray that she would recover from RSV and pneumonia and that she would not have any more borderline fevers. Please pray she will be well enough to go to her Christmas party on Friday (I know she was really looking forward to the class Christmas party!) But her health and the health of the other kids around her are most important. We cannot thank you all enough for being such caring and loving prayer warriors for Ella Joy! We truly have the very best friends and family!
Merry Christmas & Happy New Years everyone!
“Glory to God in the highest heaven,
and on earth peace to those on whom his favor rests.”
– Luke 2:14
12-17-18
*update*
Thank you all so much for all your prayers! Ella Joy was crying during her check up, but she got a swab and it sounds like there is fluid in her lungs. It could possibly be pneumonia but we will know better what she has tomorrow as we will be going back to the Northwestern medical regional group for a follow up visit. Until then we are giving her amoxicillin (2x) and alternating Tylenol and ibuprofen every 3 1/2 hours all throughout tonight until noon tomorrow.
(Original post)
Please pray for Ella Joy. The school nurse called me saying that she had a fever of 101.5 that went up to 103. She is extremely weak & fatigued and we are waiting at northwestern medical regional group right now for her to be seen. She had been coughing before but today she took a turn for the worse. We appreciate your prayers!
“And the prayer offered in faith will make the sick person well; the Lord will raise them up.”
This week, we found out that Ella Joy’s ferritin levels are not decreasing at the ideal pace. She is slowing down in her decline, and this is causing us to have to schedule even more phlebotomies. Please pray that God would protect her body and cause her iron levels to come down to safe and normal levels. The first time Ella Joy had a phlebotomy, the nurse told me she was pale, and dizzy. So, they always split the phlebotomy into two and gave her fluids in between. This time, the nurse didn’t know her well, and did it all at once again. She was especially exhausted and bloated from the fluids. We pray that her iron levels will significantly drop so we will not have to go to Luries so frequently.
Our next Luries appointment is Monday January 28th. Please pray that He would guard Ella Joy against so many germs and viruses and that she would not get sick or have to go to the ER, especially when Mike is traveling for work.
We appreciate your on-going prayers, and are so thankful for such amazing friends and family who remember to pray for Ella Joy’s appointments, and for zero cancer and negative MRD. Sometimes, when things are looking good, the urgency for prayer doesn’t seem as dire. However, we always remember how healthy and vibrant Ella Joy was right before she relapsed. One day she was playing with Asaph, laughing, and running around… the next day she could barely walk with 90% cancer blasts in her bone marrow.
So thank you so much for partnering with us in prayer! It is the absolute best gift you could ever give us!
“Then you will call upon me and come and pray to me, and I will hear you.”
– Jeremiah 29:12
**Update**
11-12-18 Monday
Day +500
Thank you once again for praying for Ella Joy this week. Today’s appointment went well, but her ferritin levels are still too high, and the rate it is decreasing is slowing down. Please pray that her ferritin levels will continue to decrease, and that she would (sooner than later) have levels closer to normal which is 11-320 ng/mL. Last month it was 682, and today it was at 519. This is good news considering that sometimes ferritin levels can go up.
Our next clinic, labs, and phlebotomy is on 12-10-18. Please pray that Ella Joy will continue to be healthy and her immune system will be stronger during this time when many germs and viruses are circulating especially at school.
Mike recently got back from a work trip to NY, but will be traveling to London again towards the end of November. Please pray that Ella Joy would be in good health then, and not have to make a visit to the ER.
And as always, please pray that there would be no trace cancer cells hiding in Ella Joy’s body, but that she would truly have zero and negative MRD, and all cancer cells will be destroyed, and eradicated forever!
We cannot thank you enough for kneeling in prayer with us, and keeping the sense of urgency in prayer! Before she relapsed in March 2017, she was looking healthy and happy! One minute she was at St. Baldricks, and getting ready to be on the float, and the next minute, the aggressive t-cell cancer cells were multiplying to 90% in her bone marrow. Your prayers encourage us and strengthen us as we trust in Him to protect Ella Joy.
“This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us – whatever we ask – we know that we have what we asked of him” 1 John 5:14-15
*Update*
10-15-18 Monday
Day +472
Many thanks to everyone who continues to pray for Ella Joy’s monthly clinic, labs, phlebotomy and all the pokes and procedures she has to go through. Although her ferritin level is still too high, her levels are slowly decreasing with the phlebotomies. The rate is decrease is slowing down, but please pray with us that she will come down to safe levels of iron in her blood.
This week, the stem cell team forgot to order Ella Joy’s labs for ferritin levels. We are so thankful that our nurse noticed that there were less labs and ordered it for us in addition to her CBC.
For endocrinology, she was given fluids and cortisol, and we praise God that she will no longer need the emergency doses of hydrocortisone!
Ella Joy started basketball! She is loving it, but I did notice that her stamina is not up to par as she was before her transplant, and that she needed several breaks in-between playing. Please pray that God would strengthen her and help her to persevere and develop stamina.
“…but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
– Isaiah 40:31
Our next appointment will be on 11-12-18 Monday. Please pray that Ella Joy would truly have zero cancer and negative MRD. For a year and 2 months after Ella Joy was finished with chemotherapy the first time she battled cancer, we asked for this very prayer request. Our urgency over time diminished because she seemed to be looking “normal” and even her hair was growing out! But when she relapsed in 2017, we once again sounded the battle cries for prayers of healing. We realize even when things are seeming to look good, those are the times we need to continue praying and trusting in Him.
We thank you for continuing to be our prayer warriors and kneeling with us in prayer for all cancer cells to be eradicated forever and ever!
9-18-18 Tuesday
Day +445
We appreciate your continual prayers for Ella Joy! We were not able to get a RMH room, but a special thanks once again to the Changs for graciously getting us a hotel. Mike was on a work trip, so it was just the three of us. It helped so much to be able to stay so close to Luries. We took the train so I didn’t have to drive to Chicago.
Today was packed with labs, a visit with Ella Joy’s endocrinologist, phlobotamy, and then more immunizations (3 at once). Last week, it was 4 at once, and Ella Joy cried so much both times, but we were thankful that it could be over sooner. The good news is that Ella Joy’s CD4 was so close to the ideal number 400, that with 397, we were able to take her off Bactrim for the weekends! We were thrilled to take another med off her list! Another praise report is that Ella Joy’s ferritin levels are decreasing! Last month it was 1200, and this month her numbers were closer to 840! Thank the Lord! Please pray that we would not need the entire 8 months that was expected, but that her ferritin levels will continue to decrease with each phlebotomy procedure.
Unfortunately, we found out that due to the high dose chemotherapy, total body irradiation, cranial radiation and the Cyclophosphamide chemotherapy that Ella Joy’s body has been through, her FSH and LH levels are abnormal. Her FSH (Follicle-stimulating Hormone) should be in a range from 1-6, but Ella Joy’s FSH is currently 80. Ella Joy’s Luteinizing hormone (LH) level should be 12 or less, but she is at 33. We will wait until she is 11 years old to see if she needs estrogen patches and then eventually progesterone pills. Please pray that God would continue to protect her body. Although things are not looking the way they ideally should currently, please pray slowly but surely, God would allow Ella Joy’s body to naturally heal and be able to naturally make estrogen and that she would be able to go through puberty without needing medical help. It is rare for what a child like Ella Joy has been through to be able to do it, but it is not impossible! “For nothing is impossible with God.” – Luke 1:37
Our next appointment with labs and phlebotomy is 10/15/18 Monday. Please pray that Ella Joy’s ferritin levels will continue to drop, and that all cancer cells would 100% be eradicated forever!
We cannot thank you enough for praying with us, and even now, although the bone marrow transplant and isolation period is over, we need prayers in urgency more than ever! Please pray that Ella Joy and Asaph would be protected from the many viruses and germs that are already circulating through their school. Please pray that we would not see any new delayed side effects emerge from all the high dose chemo and radiation Ella Joy underwent. We were told sometimes the brain damage and the effects of the extra cranial radiation that Ella Joy had can be seen at the 1-2 year mark. Please pray that God would help her to exercise her brain to remember the things she has learned, and make connections to learn new things. Whether she is playing chess, practicing violin, or soon to be playing basketball again, please pray that she would “do it all for the glory of God.” – 1 Corinthians 10:31. After living in the hospital for months at a time, and being in isolation for one whole year, it is such a delight to see her doing these seemingly normal and ordinary things that kids get to do. So many of you have been faithfully praying for Ella Joy, and God has been answering in such a miraculous way!
It is such a blessing that Ella Joy is able to attend school this year! This is the very first year that Ella Joy and Asaph are going to the same school for a full day! Since I have kept my teaching certificate updated since I last taught in 2013, I am now subbing in D303. I can only sub full day at their school, however, this week, a high school called me, so I will be subbing for the first time for a special education high school class! Please pray that Ella Joy and Asaph would not be sick the days I am subbing.
We are so thankful to God for all of you who are our prayer warriors, and who never give up praying for Ella Joy!
Today was Ella Joy’s first phlebotomy! They drew so much blood that Ella Joy started turning pale, and her blood pressure was too low. We had to take a few breaks. We had a lot of procedures including an echo and also a re-do of the pulmonary function test. This time with her NG tube out, she seemed to do much better! We are still waiting for the results from the echo, but I am praying it will be enough to pass and not have to take a third test!
Thank you so much for praying for Ella Joy! The phlebotomy will be a long process that takes at least 8 months. Please pray that it would go smoothly each month, and that they would be able to get all the blood they need to take out the extra iron. Each time Ella Joy needs to get poked with an IV, and it has been challenging at times to find good veins. Please pray that it would work out and that we can get successful draws each month.
Ella Joy is so excited that she can go back to school for 4thgrade! Please pray that God would continue to protect her as there will be many germs at school. Ella Joy’s immune system is still not 100%, and we need to be careful to stay away from viruses and sick children.
Please pray as always that Ella Joy would truly have zero cancer and negative MRD. That all cancer cells will be eradicated forever! Pray that not even trace amounts of cancer would be hiding in her bone marrow, spinal fluid, or anywhere in her body!
I was told by our oncologist that even with sunscreen, there is a chance Ella Joy can still get GVHD in the sun. We have to be careful that Ella Joy is not over-heated as she does not sweat as much as she used to. Please pray that she would be hydrated and that we would be extra careful to keep her out of the sun as much as possible. We want her to be able to be a kid by going swimming, and going to the park, but we also need to make sure she is wearing sunscreen and staying in the shade too. Please pray we would have wisdom to know how to have a good balance.
Our next clinic, labs & phlebotomy will be 9-18-18 Tuesday. Ella Joy will also be having an appointment with a new endocrinology specialist on this day too. Please pray we would thoughtfully ask the right questions as there are many side effects that come post bone marrow transplant.
We are so thankful for such a solid army of prayer warriors who have been with us from the beginning of Ella Joy’s battle with cancer, to her relapse and transplant, and even now as we need prayer for the many procedures, tests, and pokes she will continue to endure.
“In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation.” – Psalm 5:3
7-24-18 Tuesday
Day + 389
Once again, thank you all for your prayers for Ella Joy. Today, the schedule was packed full! We were at the hospital all day from 8am-6pm! Unfortunately, RMH did not have room for us, but a huge thanks to the Changs for graciously getting us a hotel to stay near Luries… again!
We started out with clinic and labs, and then Ella Joy got a pulmonary function test. We found out she did not pass the initial tests. They repeated it almost 8 times, but she kept failing. Please pray that this would not be something serious. We are still waiting to hear the full results.
Then, Ella Joy had an MRI. It took about 3X longer than expected, but she was able to do it awake without any anesthesia. These results will also be in within the next couple of days. Ella Joy was able to get her ECG in our ambulatory infusion center room. We were not able to get her echo because all her procedures were running late. Please pray that we would be able to fit it in to her next appointment which is scheduled for 8/13/18 Monday.
Ella Joy’s ferratin level is too high, and our oncologist told us that we could either have her on a certain med daily for about 8 months, or she could get a phlebotomy. Please pray as our oncologist ultimately makes the final decision, that she would have wisdom and discernment to make the best decision for Ella Joy.
We were thrilled when our oncologist told us that Ella Joy could stop taking tacrolimus! I had promised that the ng tube would no longer be needed the moment we completely tapered off tacro, and today was the day! Along with taper tacro, comes getting rid of acyclovir, omeprazole and other drugs. Now, Ella Joy only has to take a small fraction of the meds she has been taking. Praise the Lord for this huge milestone,
If our oncologist chooses for Ella Joy to do daily meds, then our next clinic will be 9/18/18 Tuesday, along with an endocrinology and echo. If she decides to go ahead with the phlebotomy, then we would have to come every month starting with 8/13/18.
We are so thankful that Ella Joy seems to be doing better besides some nausea, diarrhea and tummy pains. Please continue praying that she would truly have zero cancer and negative MRD. After a bone marrow transplant, I was told in Seattle that her chances of relapse rise from 30% to 70%. We are definitely not out of the woods yet. We need your prayers now for zero and negative more than ever!
When Ella Joy had her NG tube, it was very convenient to give her meds through a syringe. Now, she has to take some of the meds in larger volumes. Please pray she would be able to do it. I told her if she could do it when she was 4 years old, she most certainly can do it now! Please pray she would relearn how to take liquid meds and that she can get it down smoothly without choking. I will definitely update this post with any results on her procedures and tests.
We appreciate your faithful prayers for Ella Joy! Please don’t give up! Many people have come up to me saying that Ella Joy looks so good. It is a direct result of God’s healing and so many people praying and lifting her up in prayer!
“Dear friend, I pray that you may enjoy good health and that all may go well with you, even as your soul is getting along well.” ~ 3 John 1:2
I would like to end this post with a couple of tough cookies . . .
We are so thankful for all your prayers for today’s clinic and procedures. The dexa scan got moved up earlier, which was great because the bone marrow aspirate, biopsy and LP took a lot longer than we had anticipated.
One of the labs that Ella Joy got today showed that her LH (or luteinizing hormones) was higher than normal. This is most likely because of the extremely high doses of radiation Ella Joy received before her transplant. She will have to see an endocrinologist. Please pray that God would provide the perfect specialist for Ella Joy. We were reminded today that it is almost certain that Ella Joy will not be able to have children of her own. I was thinking about how Ella Joy has this stuffed bunny that she loves more than any of her stuffed animals. She treats it like a baby, dresses her, feeds her, and brings her every time we go to the hospital. It breaks my heart that she most likely will not be able to give birth to her own child. However, I am praying that whether by God’s divine miracle of overcoming the odds and being able to conceive, or by the incredible gift of adoption, that one day Ella Joy will be able to become a mother and take care of a child in the loving way I see her taking care of her stuffed bunny.
Ella Joy had to fast all morning and afternoon because she needed to be put under anesthesia for her procedures today. Asaph told her he would fast with her, and it was such a sweet gesture! (Until he kept saying that he was “sooooo hungry!” and after every procedure, he would ask if he could eat yet) LOL!
Please pray for our next clinic which will be on a Tuesday 7/24/18. We will have a packed schedule of procedures including clinic and labs, PFT, MR, ECG, and ECHO.
Would you please pray for every single oncologist, doctor, APN, nurse, and every single member of her medical staff for each and every single procedure. Please pray God would lead each of them with wisdom, skillful hands, and integrity.
“Let us then approach God’s throne of grace with confidence, so that we may receive mercy and fine grace to help us in our time of need.” – Hebrews 4:16
*Update*
5-29-18 Tuesday
Day +333
On 6/11/18, please pray for Ella Joy as she will haveClinic at 8am, a Dexa scan at 11 am, Bone marrow aspirate, biopsy and Lp (spinal tap) at 12 noon (this time can change based on emergencies).
Also, on 7/24/18 please pray for Clinic at 8 am, PFT (pulmonary function test) at 9am, MRI at 10 am, ECG at 11:45, ECHO at 1 pm.
We always appreciate your prayers for our upcoming pokes, tests, and procedures!
5-21-2018 Monday
Day +325
Thank you for all your continual prayers! After we were discharged from the hospital, I got medical paperwork showing all the new meds I needed to give Ella Joy including the times and dates. For the last date up to the 18th, I wanted to confirm if I needed to give flagyl through or end on that date, so I emailed the stem cell APNs. The response was that since Ella Joy’s c diff was so severe, she was actually supposed to take the meds 5 additional days. I told them that I was not aware of this change, and that we needed to have a talk about how we could have more effective communication going forward so I as the parent am not guessing the dosage and dates. At today’s visit, the attending was the director of the stem cell team. I had addressed the situation and asked how can we better communicate going forward so that I as the parent am aware of what dosage and dates I need to administer meds to Ella Joy. His response was that they did nothing wrong and no one make a mistake. I told him that I am not trying to point any fingers or get anyone in trouble, but rather in the future to have a plan so that this doesn’t happen again. Please pray for the director of the stem cell team as well as the other staff, other oncologists, APNs, nurses, etc. In an effort to help them better inform parents, I had asked them to talk with me about how to effectively communicate in the future. The director of stem cell transplant was defensive and told me that no one make any mistakes, they had no fault, and therefore there were no problems. Please pray that the medical team would strive to help inform parents instead of trying to cover over mistakes. Please pray that the stem cell team would be able to put the interests of their children patients as priority. This is not the first time the stem cell team had failed to communicate with me. When we were checking Ella Joy’s hydrocortisone levels, they failed to let me know whether to hold her levels or not, and no one wanted to take responsibility for not informing me. I told them I cannot play a guessing game with meds and procedures, and needed someone to inform me for the future. When we were discharged, the nurse highlighted the dates and dosages for Ella Joy’s meds, and made sure I understood everything. It was such a surprise that the dosage had changed and I was not informed. It was even more of a surprise that the director of stem cell did not see that as a problem.
Ella Joy’s electrolytes are lower than normal, and it appears that she has not fully recovered from her dehydration from when she was in the ER. Please pray that she would be 100% healed from c-diff and that it would not come back. After talking to another parent whose child fighting cancer had an extremely severe case of c-diff, if and when it comes back, it is more of a challenge to treat, and for children like Ella Joy who is immunosuppressed, it can be seriously life threatening.
We found out today that Ella Joy will be needing to get an MRI to check her heart and liver for iron. Her ferritin levels are abnormally high, and after the MRI, they will determine if she will need a phlebotomy or oral meds to decrease her ferritin levels. Please pray that everything would go smoothly and that Ella Joy would be brave and not afraid of getting this MRI. The stem cell team is working on getting a date scheduled for this MRI, so please pray that would go seamlessly. Our next appointment we are either looking at 6/11 or 6/25 depending on when we can get Ella Joy in for an MRI. (I will update dates ASAP)
Please pray for me … I found myself worrying that the stem cell team was not communicating dosage changes to me and even more worrisome, that they did not see it a problem.
Please pray that at times like this I can look to God who takes my right hand and comforts me and tells me to not fear because He will help me through the length.
“For I am the Lord your God who takes hold of your right hand
and says to you, Do not fear; I will help you.” – Isaiah 41:13
Please also pray for Mike … right after our clinic visit, he left for a work trip. As always I pray that Ella Joy would not have an emergency and need to go to the ER when Mike is away.
Thank you for asking me how Ella Joy is doing. Some days are better than others. She often struggles with nausea and stomach pains in the morning with her 2 bins of meds she needs to take. She had also been struggling with diarrhea and even having several accidents a day, but the meds seemed to help a bit with that.
Please continue praying for zero cancer and negative MRD. Please pray that all cancer cells would truly be eradicated forever!
I am ending this post with a picture from Ella Joy in the ER. A friend had told me that she enjoys seeing the smiling pictures of Ella Joy I often post, but she told me that she also wants to see the reality of what fighting cancer and struggles post bone marrow transplant looks like so she can pray with more urgency. It was such a scare when even after 2 boluses, the ER doctors could not get Ella Joy’s blood pressure up. It took a pressure bag on the 2nd bolus as well as a third bolus to get her levels up. This picture was taken right before she had red man’s syndrome to the vancomycin. She was crying because she had to get two IVs in her arms and hands.
Thank you for never ceasing in praying for Ella Joy and our family. We have such amazing friends and family and cannot thank you enough.
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 30th. 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 30th 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 21st, 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!
Praise the Lord, Ella Joy’s platelets were trending upwards this week! We can officially have labs and clinic every three weeks instead of every 2 weeks! Our next appointment will be on 4/19/18. Please pray that everything would work out in terms of finding rides Sunday night 4/18, and Monday afternoon 4/19 as Mike is scheduled to have a work trip to Asia during this time.
Mike is also leaving for a work trip 3/21, so please continue praying that God would protect Ella Joy and keep her safe from germs and viruses so we can elude a visit to the ER.
Please pray that Ella Joy’s ferritin levels will naturally decrease. This iron overload is most likely a result of having so many blood transfusions. We pray that her stem cell oncologists would have wisdom and discernment in making the best decisions concerning treatment for her ferritin levels to decrease.
As always, please pray that there would be no traces of cancer hiding in Ella Joy’s body. May all cancer cells be eradicated forever and ever! Please continue praying for zero and negative! “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us.” – Ephesians 3:20
3-5-18 Monday
Day +248
Today would have been my dad’s 75th birthday. When I gave birth to Ella Joy and Asaph, he was always the one who would sacrifice his time and energy to drive 3 hours to Savoy, Illinois to cook sesame chicken and pigs feet for me and buy diapers and anything else I needed before heading back for his 3 hour trip to Joliet.
I know he would have been so proud to see his grand-daughter fighting for her life and battling cancer not once, but two times now. He passed away not long before Ella Joy was first diagnosed in October 2013. Being a medical physician himself, my dad would always administer the shots and write out the physicals I needed for school when I was younger. I never had to go to the hospital or doctors office when I was growing up. Thinking back, I hardly ever got sick and I rarely even took otc drugs like Tylenol. It was very difficult as a mother to have to sit back and see Ella Joy injected with so many chemotherapy meds for 2+ years and then even higher dose chemotherapies when she relapsed. For Ella Joy, all she knows is that half her life has been spent in the hospital. Next month, she is turning 9, and my prayer for her is that she would truly be cancer free and that there would not be a single trace of cancer hiding in her spinal fluid or bone marrow, but that all traces of cancer would be eradicated forever!
Around this time last year, Ella Joy was an honor child for St. Baldricks. She was going to get the chance to be on the float for the parade, but she suddenly felt extremely lethargic and got very ill. It was then we found out she had relapsed with t-cell leukemia, and we took an emergency flight to Seattle.
This morning, drawing labs was very challenging for Ella Joy. She wanted to get poked in her hand, but all her veins are bruised and they could not find any usable veins there. They tried poking her hand, but when they could not draw blood, they poked her again in her arm, and she was crying hysterically in pain. Her platelets have been trending downward, and our oncologist was concerned, so instead of changing to every 3 weeks, we need to have her seen in 2 weeks to make sure there are not more serious concerns. In addition, we found out that her ferritin levels are abnormally high. Today they were 1, 624, and they want to see levels less than 500. She will soon be needing an MRI of her liver to see the iron content. Please pray that her ferritin levels will decrease to normal levels naturally. If it doesn’t significantly decrease, she will be put on even more meds. The best news we found out today is that her adrenal glands are now working, and she will not have to take hydrocortisone anymore! She will only need it when she is ill and when she is put under sedation for operations and procedures. Praise the Lord for this wonderful news!
Mike is going on yet another work trip and is on his way to New Jersey right now. Please pray that God would protect Ella Joy so she would not need to go to the ER. Please pray He would continue to protect her from germs, viruses and any kind of sickness.
Ella Joy continues to feel nauseous and have stomach pains especially when I give her two full bins of meds in the morning. Please pray that the nausea and tummy pains would get better soon.
I remember I prayed earnestly for my father to come to the Lord starting when I was 12 years old. Just before he passed away, he accepted Jesus into his heart. I was so thankful to God to know that he had finally given his heart to Christ.
Some Bible verses I like to meditate on when I think of how He saved him…
“Therefore he is able to save completely those to come to God through him, because he always lives to intercede for them.” – Hebrews 7:25
and
“I want to know Christ—yes, to know the power of his resurrection and participation in his sufferings, becoming like him in his death.” – Philippians 3:10.
As you pray for Ella Joy and all the prayer requests I have asked you to lift up to the Lord, I want to encourage you to pray for a loved one to come to know Christ and to give their heart to Him. Maybe someone has fallen from their faith, and they need prayers for a spiritually resuscitated heart. It was one of the greatest prayer requests God answered next to healing Ella Joy of cancer two times.
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 5th, 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. 19th 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. 5th 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 …
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!
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
***Update***
12-20-17
Day +170
Please pray for Ella Joy, she had blood in her stool this morning.
**Update**
12-18-17 Monday
Day +168
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
*update*
12-11-17 Monday
Day +161
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:
“Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.” – 1 Corinthians 15:58
Thank you for never ceasing in praying for Ella Joy and our family. We have such amazing friends and family and cannot thank you enough.
Ella Joy Sun Young May May Won ... God's gift to us 