Ten looks at Christ

1-4-18 Thursday

Day + 187

Ten looks at Christ

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

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

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

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

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

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

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

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

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Persistent Prayer

****Update****

12-29-17 Friday
Day 180

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:

Greater Love has no one than this

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11-27-17 Monday

Day + 147

Thank you so much for praying for Ella Joy’s appointment this morning! Since Luries has a new policy about no siblings 12 years and under, I was not sure if Asaph would be able to come up with us to the oncology floor. A special thanks to Sunny for coming to watch Asaph this morning! And last week, a special thanks to Sandy for watching the kids so Mike and I could go out on our first date night since coming back from Seattle! We are truly so thankful and blessed!

Today’s appointment went much better. Although Ella Joy’s oxygen is still reading low, we did not have to be admitted. Next week, December 4th, we will have a long day including: labs (CBC, CMP, Mg, PO4, Tacro, IGG, Ferritin, Fasting Triglycerides), PE, CT Chest, PFTs, and possibly more procedures. Please pray that everything will go smoothly.

Please also pray that we would get more answers as to why her oxygen levels are so low.

Ella Joy has continued to be extremely nauseous especially in the mornings when I give her the majority of her meds through her NG tube. She also has continued to have diarrhea. Please pray that God would continue to heal her body of nausea and diarrhea and that her oxygen levels would increase.

Please pray that we would be able to order through insurance a certain Corflo enteral feeding tube, 43 inches, 10 French. This particular one is ideal for her. With the other shorter brand and style, Ella Joy can only wear clothes from her feet up. This is a problem because we only have so many stretchy dresses that can fit up from her feet..

I remember a few years ago I forgot it was Asaph’s birthday because we were so busy with Ella Joy’s chemotherapy treatments and procedures at Luries. Today is once again Asaph’s birthday and he had to celebrate it at the hospital while Ella Joy had her labs and clinic appointment.

Please lift up a special prayer as well for Asaph. Ella Joy’s relapse and BMT has been challenging on the entire family … including him. I remember when he first went to the Hutch School for patients’ siblings, he was so sad to be away from Ella Joy. They always screen the children because every child there has a loved one who is immunosuppressed. Asaph would pretend to cough and he would tell them that he was sick. They immediately sent him back. When I checked him out, I realized that he was absolutely fine. I asked him why he told them he was sick. He told me that he just missed Ella Joy and wanted to be with her in the hospital.

He started to get used to Hutch School and developing friendships with many of the students there, and by the time he was finally starting to love school, we told him we were going to Illinois again. He was crushed, and to this day continues to cry because he misses his friends from Hutch and Seattle.

“Greater love has no one than this: to lay down one’s life for one’s friends.” – John 15:13

When Asaph donated his bone marrow for Ella Joy, it was a very faint glimpse and small reminder of the greatest love of all time … Jesus amazing love and sacrifice for us on the cross.

Asaph never once complained, but was honored to help save his big sister’s life.

I remember when we found out on March 17th, 2017 that Ella Joy had relapsed with t-cell leukemia, Asaph’s eyes welled up with tears, and he kept crying, “Ella Joy has cancer again?” He has never given up praying for God to heal Ella Joy from cancer.

I am so sorry that this year I cannot give him a big birthday party, but instead, please send up big prayers that God would grow him each day more and more into a young man of Christ. That he would continue to be such an encouragement to Ella Joy.

At night, when Ella Joy needs to go to the bathroom, Asaph wakes up so he can help carry her ng backpack. It is just the sweetest thing to see him serving his sister, even in the middle of the night.

Thank you so much for being our soldiers in Christ. Praying for Ella Joy and our family in the front lines… together with us.

 

The Breath of the Almighty

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11/20/17 mon
Day +140

 
***latest update***
We cannot thank you enough for praying for Ella Joy during this time of uncertainty and emergency. She got a chest x-ray as well as additional labs and even vbg (veinous blood gas). No one knew why her oxygen was as low as the 80s.
When Dr. Morgan pulled me aside into the empty room I panicked because the last time she did that, she told me that Ella Joy had relapsed way back in March.
She was very serious and even told me although she could not send me to the icu from hemog, that she would probably go there from the ER.

 
We wanted Dr. Morgan to call scca (Seattle cancer care alliance) to make sure they were
on the same page with the oncology team. Scca oversaw ella Joy’s transplant and would know expert knowledge about bmt and possibly have insight into her dangerous oxygen levels.

 
Dr. Morgan refused to call scca, even after we requested for her to do it, so we had to do it on our own. After scca heard about ella Joy’s oxygen in the 80s, they told us it would be dangerous to send her home.

 
In the end we asked the ER attending to call scca and since with the aid of oxygen she was able to stay in the 90s … we were able to get discharged tonight.
Please pray that we would be able to have wisdom and discernment as we monitor her closely as we are now on our way home.

 
The scary thing is that she looked happy and healthy this morning. We were expecting a quick lab and clinic.

 
When she got her vitals everything seemed normal until we got to the oxygen. The machine kept beeping red and I knew there was a problem. All the nurses and doctors on the floor gathered in her triage room trying to get her oxygen up. Even with the aid of oxygen, it was still too low.  We were then rushed to the er.

 
Please pray that God would continue to protect Ella Joy’s body. Just the other day she had very bad diarrhea. She had three bad accidents where she soiled three underwear and I had to clean puddles off the ground. Many times she was nauseous when we gave her meds through her ng. I did not want her to throw up her ng out of her stomach again so I gave her zofran a couple of times.

 
Please pray that we would be able to find a place near our home where she can have pt/ot. Currently our insurance only covers a few places that are too far a drive. Please pray we would be able to work it out with insurance where they will agree to cover pt/ot close to our home.

 
Please pray that we would be able to get the meds Ella Joy needs. We recently found out a few will not be covered by insurance. Many times we have problems refilling meds that are covered. Today we found out one med was not refillable because Luries Walgreens accidentally billed us for 90 days when it was really for 30 days.

 
It was very unsettling to leave the er not knowing why ella Joy’s oxygen levels were so dangerously low, but please pray that we would be able to get her timely help if this ever happens again. But please pray it won’t ever happen again!
Please pray whenever we get anxious we would remember Job 33:4 that the Spirit of God has made Ella Joy. The breath of the Almighty gives her life. Amen!

 
**update**
Oncology rushed Ella Joy to the ER and told me she very well may need to go to the icu
We need to take chest x rays and additional labs … Dr. Morgan took me to a room and told me the severity of Ella Joy’s low oxygen. Please pray for a miracle from God!

 
*Update*
The emergency oxygen is not helping… I was told Ella Joy will need to be admitted … please keep praying! There are still no answers

 
(Original post) Please pray for Ella Joy, her oxygen was dangerously low and they just put her on oxygen.

 
They do not know why at this moment … thank God we were already at Luries for routine labs and clinic!

Your consolation brought me joy

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11-14-17 Tuesday
Day +134

Oh my goodness, right before I left to walk Asaph to school, Ella Joy threw up and she threw up her ng tube out of her stomach right out of her mouth. She just got a new one placed yesterday. I watched closely, but have never done it before, but since she needs her meds and abundance of water because of her tacro med, I am going to attempt to put a new one in. Please pray for me!

Just got back from taking Asaph to school … I put my medical gloves on, put lube on the end of the ng tube and had Ella Joy breath deeply and blow out as if blowing out candles, and I was so proud of her! Ng tube is in, and I even checked placement with a stethoscope! Praise the Lord!

Please pray that her nausea would go away soon …
I have a bad feeling about GVHD …

11-13-17 Monday

Day + 133

Thank you for praying for Ella Joy’s labs, clinic, and appointment at Luries today.  Praise the Lord we got a room at RMH.  Please pray that next week we would also be able to get a room.  They are filled to capacity and we were very thankful to have gotten a room.  However, every week we only can find out the same we go there if we have a room secured.

Ella Joy gagged and spit up as she got her old ng tube taken out and her new one put in.  I was so proud of her as she tried her best not to throw up in the midst of crying.  When I busted out the tender grips I got from a Seattle home care, my oncology team marveled at such an invention!

This past week, I was on the phone with insurance and it was a very extensive week long battle to fight for meds that Ella Joy needs to control her GVHD.  When my NP wrote the paperwork incorrectly, prior authorization asked for her to change the answer to question #10.  After she did that, she was extremely frustrated they denied the med beclomethasone again.  When I called insurance, they said they now need a letter of medical necessity in the form of an urgent appeal.  I knew we were at the bottom of the amber bottle, so I asked my NP to please write this appeal.  By this point, she told me she was too busy and annoyed with insurance and had already called insurance and tried to tell them Ella Joy needs this medicine.  My NP told me that she didn’t want to write anything because insurance would only deny again.  She once again told me she was too busy and told me she was going to wait to write this letter later.  I pleaded with her to write it ASAP because we were running out of this med.  I could not sleep at night, so 3am in the morning, I wrote to my NP as well as to Dr. Morgan and asked them to please be proactive with insurance and treat Ella Joy as if she were their own daughter.  Dr. Morgan decided to fire back emailing me that I was asking for too much and was ungrateful.  She told me I was just a mom taking care of one kid, and they were taking care of several children, so I was not as important. She also told me that it was not their job to deal with insurance.   I read it right before I was going to a church woman’s retreat.  I was so hurt by this email that I tried to respond with a nasty gram, saying that she was incredibly unprofessional and rude.  I wanted to call her out on the whole wrong dosage of tacro ordeal.  My NP had emailed me that the tacro dosage would be different.  Afterwards she received the tacro level and told me what to change the dosage to.  After 2 weeks of wondering why Ella Joy was getting nauseous, throwing up, having tummy pains, and diarrhea, I was the one who figured out that my NP gave me the wrong dosage.  Dr. Morgan told me that there was no way my NP would have known the dosage change even after I had told her that my np emailed me about it, and had already admitted that she had made the mistake.   I wanted to tell her that she was the oncologist and it was her job to help me get the meds Ella Joy needs to survive.  I had spent several hours a day for a week on the phone with insurance to make sure my oncologists knew what they needed to do in order to get these meds.  I knew insurance had been changing the reasons why they would not cover the meds, and also depending on which supervisor you talked to, they would say different things.  It was incredibly frustrating, but after reading Dr. Morgan’s email, I was crying all the way to the church woman’s retreat.  God’s timing couldn’t have been better.  Mike would not let me respond to Dr. Morgan’s email, for fear that it would compromise Ella Joy’s care and I truly did not have time to revise and send it because I needed to leave for the retreat.  If I did not attend this retreat, then I would have been at home thinking how I can write a really good comeback to Dr. Morgan.  When I got to the retreat, I had a little chuckle with the Lord that the speaker’s name at the church woman’s retreat was also named Dr. Morgan.  The theme of the retreat was joy and appreciation.  How appropriate!  He knew I needed this retreat and it was the first time I had been away from the kids in a very long time.

I was reminded of the meaning behind Ella Joy’s name.  El means God in Hebrew.  She is the daughter of God who brings us joy.

“When anxiety was great within me, your consolation brought me joy.” – Psalm 94:19

This morning, I knew I was going to see Dr. Morgan, so I had asked some sisters in Christ to pray that I would have wisdom, patience, and love before I encountered her.  I had already decided that I would put Ella Joy’s care first, and although I wanted to tell her off and give her some choice words, I truly believe God helped me to be calm and to keep the focus on Ella Joy’s care.

Please pray that from this point forward that there would be clear and effective communication between my oncology team and myself.

Please pray that my insurance would realize that Ella joy truly needs all these complex compounded meds (that she had no problem getting in Seattle), and that they would help cover the costs of some of them that are thousands of dollars for one dose!

Please pray that although they do not have expertise in BMT, that my oncology team would be on top of Ella Joy’s labs, meds, and dosages.  To this day, although they have a med list from SCCA, and I have told my team the meds and dosages several times… I still have to correct them, and every single week, the info they have in their system is wrong!

This morning, on the shuttle from RMH to Luries, Ella Joy felt nauseous again.  Please pray that the nauseous feelings, tummy pains, and diarrhea would soon go away.  It definitely makes me feel like the GVHD from too low of tacro for 2 weeks has come back, but please pray that it would just as soon subside and go away for good.

Please pray for me and the children as Mike is already off to NY for another work trip.   Please pray that Ella Joy would not have any complications, and that she would not have to go to the ER.

When Mike is away for work, it especially challenging to care for Ella Joy and Asaph because I am confined to home as Ella Joy is in isolation.  Please pray that this week the Lord would give me extra super natural strength to give Ella Joy all the meds she needs throughout the morning, day and night, and that I can also be on top of taking Asaph to school and caring for him too.  So thankful for the meals so many have been dropping off that helps our family so I don’t have to go grocery shopping and cook everyday!

Please pray that next week we can get a room at RMH on Sunday Nov. 19th!  So that we can go to her appt. on Nov. 20th first thing in the morning.

Please pray that Ella Joy would truly have zero cancer and negative MRD.  Knowing that she has a 70% chance to relapse, I am holding my breath every time I check her lymph nodes.  Please pray that all cancer cells would be eradicated forever and ever, amen!

Please pray that when I feel stressed out from dealing with insurance and my oncology team is reluctant to help, that I would seek out the Lord for strength, reading His Word, and seeking Psalm 94:19 joy.

Thank you for taking this journey with me and for praying for Ella Joy.  We cannot thank you enough!

Memorial Stones

*Update*

11-7-17 Tuesday

Day + 127

This morning, Ella Joy was nauseous again when on the shuttle to go to Luries.  I had to give her zofran (which I had not needed to give her since we started her steroids for GVHD).  She continues to have tummy pains and she even threw up a few days ago.  Please pray that the GVHD would get better without having to go back to her 3 steroids.  We are just in the process of tapering her off.  2 weeks of the wrong dosage has definitely taken effect on Ella Joy, and we ask for your prayers to spare her from the harsh side effects of taking hormones again.  Please pray the nauseousness and tummy pains would go away on its own soon.

Today Ella Joy got the flu shot.  I remember SCH saying that she should not get it until possibly the 6th month, or after a year, but Luries does things differently than SCH.

Please pray for the process of ordering Ella Joy’s meds.  There is a very complicated process since the majority of Ella Joy’s meds are compounded.  Most of her meds need prior authorization since they are so complex.  Our oncology team gave prior authorization and gave all the necessary paperwork to order Ella Joy a refill on beclomethasone.  Insurance denied it over and over again.  Turns out they said there was one question that my NP filled out wrong.  It was as simple as one wrong check box.  Please pray that she would be able to get this med as well as her other meds filled out in a timely manner.  We only have a small amount left, and urgently need refills, but with all this paperwork and denials from insurance, it is taking much longer than we had anticipated.  I am constantly fighting to get Ella Joy meds she literally needs to stay alive. Praise the Lord we are weaning Ella Joy off some meds like phosnak and magnate.  Please pray that these levels will continue to be at sufficient levels so we can stay off having to take more meds.

The NG tube that Ella Joy currently has is reaching its expiration date.  We usually had SCH change out her NG tube when she was under anesthesia.  However, now that she is mostly done with all of her procedures, she will not need to have a BMA or LP until the one year mark.  So this means that she will need to be awake when they take her NG tube out and put a new one in.  The only time she was awake was the very first time she got an NG tube, and it was a very traumatic experience for her.  Please pray that she would be able to be strong and brave and that it would go smoothly if she needs to get it replaced next week.

Thank you so much for praying fervently for Ella Joy.  We will continue to go to Luries for labs and clinic weekly.  Especially since she has been nauseous and her tummy has been hurting, we are praying for wisdom to know what to do for next steps.

“This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us.” – 1 John 5:14

(Original Post)

10-30-17

Day +119

Thank you so much for praying for Ella Joy this week!  She still got an IV poke in her hand, but with the j-tip and cold spray, she told me it didn’t hurt as much this week!  Praise the Lord!  Such an answered prayer!  Today I found out that my NP gave me the wrong dosage for tacro which could have been very problematic!  I did notice her hands were not as shaky, but that could also mean that her GVHD was not under control for a couple of weeks!  When transferring meds from Seattle’s pharmacy to the Lurie’s pharmacy, there are some meds that do not transfer the same, and sometimes we need to double or even triple the dose.  Tacro was one of those meds, and I am so thankful to God I realized this morning that she was getting the wrong dosage which makes sense why her tacro has been too low these past two weeks.

The wheelchair was supposed to be ordered and on its way, but for no apparent reason, Lincare cancelled the request, and I had to have Ella Joy’s oncology team re-send more paperwork, and hopefully we can get her one by the end of this week!

Next week, instead of the usual Monday labs/clinic, we are going to have her appointment on Tuesday instead.  None of her oncology team will be available on Monday.  Please pray that the IV poke will go well as it did this morning!  Please pray that meds will go smoothly as we are tapering her off some of her meds like budesonide, and decreasing the frequency of some meds like magnate, phosnak, and amlopipine.

This Wed. Mike is scheduled to go on a work trip as well as next week.  Please pray that the times he is gone Ella Joy will not have any complications or need to go to the ER.

Please continue praying for Ella Joy to truly have negative MRD and zero cancer.  Sometimes when I look at her I am so thankful to God that even while she is on so many drugs and meds, she is still smiling and laughing, and playing games with Asaph.  Then, I am reminded that the odds are against her.  She has a 70% chance to relapse, and a 30% chance to be cancer free.  Please pray that there would be not even a trace of cancer anywhere in her spinal fluid, bone marrow, or anywhere in her entire body.

In Joshua 4, I was reminded how Joshua set up stones in the midst of the Jordan to be memorial of all the wonderful things God has done even in the midst of times of drought.

Well, I was reluctant at first to post pictures of those who we met and those who visited us in Seattle because we didn’t get a chance to take pictures with everyone we would have wanted to.  I didn’t want to leave anyone out… we are so incredibly thankful to so many friends and family who showered us with prayers, encouragement, support, and love!  I would say these pictures represent only a small portion of the amazing people we met in Seattle, and our friends who visited us as well.

Please know that each one of you represent a Joshua 4 memorial stone that reminds us of markers of God’s faithfulness in our lives.

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Join me in my struggle

*update*
10-23-17 Monday
day + 111

For this week’s appointment at Luries, Mike was not able to drive us downtown, because he is on a work trip out of the country. I am so extremely thankful to both Jennifer C’s for driving us to and from downtown Chicago so we could go to Ella Joy’s appointments and not have to take the train/ or uber. We didn’t have anyone to watch Asaph, so he was watching cartoons in the waiting room until a volunteer brought him to our triage room.

This morning, Ella Joy was feeling dizzy. She also went diarrhea about 4 times early in the morning, and woke me up because she needed help to the bathroom. I helped her carry her NG bag and held her up so she wouldn’t fall.

Please pray for Ella Joy’s lab draws. Since she got her double lumen Hickman line pulled in Seattle, she has no port or central line, and needs IV pokes every week we go to Luries for labs. She has no veins in her arms, and they need to repoke her in her hand because she also had very limited veins even in her hands! She cries every single time they poke her, and even with cold spray and J-tip, she tells me it terribly hurts her hand. Please pray that the nurses would be able to get her veins, and that He would even help them to find good veins in her arms! It would be a miracle, but He is able! For the CBC, the nurse told us there was a clot, and we would have to re-poke her! I asked Dr. Morgan if this was necessary, and she said since we come weekly, we could skip it. Whew!

Please pray for our insurance, as well as our Walgreens pharmacy at Luries. In addition to taking the kids to the hospital and advocating for Ella Joy’s appointments in clinics and labs, I had to call insurance several times and talk for hours – fighting for Ella Joy to get the meds she needs. At this point Luries is the only pharmacy that knows how to compound the majority of her meds. The problem is having to call the sch pharmacy to confirm that I only had a certain quantity of meds so I can have them refilled at Luries, and talking with insurance and letting them know I truly need certain meds that I only have a few doses of. Luries pharmacy has been getting insurance to give me vacation overrides for the meds they believe I should not be out of yet. The problem with this is that we are only allowed one over ride per drug, and if I am out of her meds, I do not want to be penalized for getting a refill when it is actually time. Please pray for a smoother transition between SCH to Luries pharmacy as well as with insurance.

Since the transplant, Ella Joy easily gets tired, her legs are weaker, and many times she needs a wheelchair. She no longer fits our double stroller. We are looking into getting a wheelchair. We are currently looking into renting versus buying through insurance. Please pray for wisdom in knowing what is best for Ella Joy.

When we got to Ella Joy’s appointment this morning, we were told no labs were ordered. This is the second week in a row! I got a print out confirming her phlebotomy this past week, but when I asked why there were no labs ordered, the response was that sometimes they disappear for no apparent reason. Please pray that that for this upcoming 3rd week at Luries, there would be labs ordered! Tacro is a time sensitive drug, and it is imperative that we get her labs drawn before or close to 9am, so I can administer her tacro at the right time. Pediatric oncology may not know this BMT knowledge, but I tried explaining it to them a second time. Praying next week labs will be ordered and go smoothly.

Thank you so much for your never ceasing prayers for Ella Joy!

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” – Phllipians 4:6

*Update*

10-17-17 Tuesday
day + 106

Thank you so much for your prayers! The ER was not able to find out why Ella Joy was having headaches and stomach aches.

However, she is now getting her 2nd bolus of fluids and will be able to go back to RMH afterwards.

We were almost not able to get a room at RMH this time as they are packed. We were very thankful to God that we were able to get a transplant room. Please pray that for these upcoming weeks, God would open the doors so that we would be able to get a room at RMH on the transplant floor every week Sunday to Monday.

I have to admit something … when I was packing our things to go downtown for RMH, I forgot Ella Joy’s charger for her NG pump. Her pump ran out of energy, and there were periods of time she did not get fluids. It seemed like both yesterday in the infusion center, and today at the ER, she seemed much better after getting boluses.

Please pray that Ella Joy would no longer get stomach aches, headaches, or chest pains. We are praying it would just be a case of dehydration and nothing more serious.

Today we were supposed to have Asaph start school, and Ella Joy her home tutoring, but we unexpectedly had to go to the ER. Please pray that we would be able to go back home tonight and not have to rush back to the ER.

Your prayers are like gold to us, and we are so thankful that you never give up in lifting Ella Joy up to our Father in prayer!

“I urge you, brothers and sisters, by our Lord Jesus Christ and by the love of the Spirit, to join me in my struggle by praying to God for me.” – Romans 15:30

(original post) Rushing ella joy to the er, she is having stomach pains and head aches … please pray!!!

He hears us

10-16-17 Monday
Day +105
Thank you for praying for our flight back from Seattle to Illinois. We got to sleep in our beds at home for one night, and then we headed for Chicago. We were expecting to have an easy lab/clinic and go home, but that didn’t go the way we had anticipated. Ella Joy started to feel extremely cold this morning before we headed to Luries. She then started to get headaches. Her blood pressure and heart rate was too high and her temp is creeping. Please pray that God would protect Ella Joy and help her body to feel better soon. We recently found out that the pred Ella Joy hsas been taking has been suppressing her adrenal glands, reducing the levels of hormones secreted by her adrenal glands. We need to carry an emergency hydrocortisone needle dose, and she needs to get 2 doses every day as well.
When we first got to Luries this morning, there were no labs ordered for her and they did not have any knowledge of her extensive med list. I had to tell them every single med she is on, and thank God I memorized each med and dosage. Please pray that she would be able to get the meds she needs. Insurance has been disputing some of the essential meds she needs and has been taking with the Illinois Walgreens pharmacy. Getting refills has been tricky since the Seattle team is not legally allowed to re-fill orders for Ella Joy, but our Illinois oncologists are not exactly sure what she needs.
There was no timed labs for tacro ordered, and I was actually thankful I gave it to her this morning, since it is a time sensitive drug, and the lab draws would have been way too late by the time they would get to draw her labs.
Tomorrow, we are going to need to come into Luries again and get her labs. Right now, they are trying to see what is going on with Ella Joy. We are in the infusion center.  Before we left Seattle to come to Illinois, Ella Joy went to the ER for chest pains, but were not sure what caused her chest pains. Now, we are not sure why her heart rate is so high, and why her temperature is creeping.
Praise the Lord that Mike was with us today! We will have to stay in Chicago, and hopefully Ella Joy will feel better after her labs and being seen tomorrow.
Here is a picture of Ella Joy this morning at Luries when she was feeling crummy, extremely cold, and having headaches. She fell asleep in prayer position.
“This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. ” – 1 John 5:14
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Onward Christian Soldier

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Update

9-10-17 day +99 Tuesday

Thank you soldiers of God! We are so thankful for your fervent prayers!

Ella Joy woke up this morning crying that she was having chest pains. Thank God Mike rushed back from work to help with Asaph so I could take Ella Joy to the ER.

The pain slowly subsided by the time we got a room in the ER. She got an EKG as well as a chest x-ray. Both seemed to be fine. They were aware she currently has pericardial effusion or fluid near her heart. Ella Joy also continues to have high blood pressure. Very likely due to the tacro that she needs to take twice a day, her hands continue to tremor and shake. She continues to be lacking in magnesium and phosphate, and her cholesterol is too high.

To be very honest, they are not sure why Ella Joy had chest pains. She did not eat anything spicy, nor did she have an unusually large meal the night before. In a couple of days, Ella Joy will be going under to get her double lumen hickman pulled. I am extremely thankful to God that this ER visit happened before she got her line pulled and not after!

Please pray with us that she would not have any more chest pains, and that in the midst of flu season, with viruses and bacteria everywhere … that we would keep her away from it all as I try my best to isolate her and use lots of soap/water and hani-sani.

Today makes day +99 and tomorrow is day +100! 100 days post transplant is a huge milestone, however, we are not out of the woods quite yet. We still have a whole year of isolation, no school, and no crowded places.

We are currently looking for a company in Illinois that carries Nourish in case she needs tube feeds as we are tapering her off prednisolone. For now, we still need the bags for water as it is critical that she gets enough water to make sure her liver does not get damaged.

Please pray that as Ella Joy goes down for her double lumen hickman line removal, that everything would go smoothly on the 12th.

There are lots of continual prayer requests that we have .. please pray that Ella Joy would truly have 0 cancer and negative MRD. That there would be no traces, no cancerous aggressive t-cells hiding in her bone marrow or spinal fluid. Please pray that despite the odds after this transplant that she has a 70% chance to relapse… that this statistic would not discourage us. We pray for a true miracle for complete healing in her body that has been through so much.

As Sabine Baring-Gould once wrote, “Onward Christian soldiers,
marching as to war, with the cross of Jesus going on before!”

“Endure suffering along with me, as a good soldier of Christ” – 2 Timothy 2:3

(original post) Ella Joy woke up crying to chest pains… we are headed to the ER … please pray!

Lead me to the Rock

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10-2-17 Monday

Day +91

We want to thank you all for never ceasing in prayer for Ella Joy! We have some praise reports as well as some on-going and new prayer requests:

We praise the Lord that the prednisolone has helped her GVHD. The moment we started it, her extreme nausea and tummy pains caused by graft vs host disease went away. However, there are many side effects of pred that require even more meds. Her blood pressure has been too high, and we have increased her enalapril 3X, tripling her doses, and even now, it has been ineffective, so she needs a new med amlodipine as well. Please pray that these two meds with increased doses will help her blood pressure to decrease. In addition to her high cholesterol, she was also lacking in phosphate, so she has been on fish oil and phosnak. Today we found out that her magnesium is low, so she will need to have additional doses of mag 3 times a day.

One praise report we wanted to share is that the fluid as well as the nodules in her lungs have seemed to clear up! So Friday will be her last dose of voriconazole. However, her platelets have been trending down, and the BMT team seem to think it might be med related because she is on so many drugs … the Bactrim could be the culprit. So, instead of Bactrim, Ella Joy is taking dapsone.

After the CT scan, we also found out that Ella Joy has pericardial effusion or fluid around her heart. Please pray that this would simply go away after time in the same way the fluid in her lungs have.

Please pray for us. At this point her meds should be decreasing, but instead are ever increasing. Although we are tapering her prednisolone, there is a cumulative effect and the pred has been affecting her levels and therefore, we have increased meds. Ella Joy’s weight having been on pred is too high. She has been eating way too much kalbi, rice, mini cinnamon waffles, mini red wax babybel cheese, and egg white delights from mcd! Please pray that as we taper her off pred. she would come back down to her ideal healthy weight. She looked at herself in the mirror and told me she didn’t like what she saw. I tried to explain to her that it is normal to have a moon face and gain weight with pred. She is still my sweet beautiful little lady. And now that she is super robust, and weighty, she is just so good to hug!

Tacrolimus is one of the most crucial time sensitive drugs Ella Joy needs to take. She must take large volumes of water with it, as it can cause liver damage. Ella Joy has decided that although she does not need her tube feeds for calories currently as the pred has given her appetite a huge boost, she wants to keep it for all the meds she needs to take as well as for water to stay hydrated. After her pred is tapered off fully, will be the test to see if she can continue eating on her own, or if she will need her tube feeds. Because Ella Joy has so many meds, there are some that need to be given 4 times a day, 2X a day, some we give with icecream, some with mango juice (this med melts plastic but we have to give it to her 4X a day!), some meds are refrigerated, some are powder that we need to prepare in small bottles and shake up every single morning and night, and some meds given only on certain days,and some meds need to be held and given later for levels … it is a lot to remember and I have to confess, somehow I forgot to give Ella Joy a dose of tacrolimus in the morning this past week and I called the BMT team, and was so devastated that I had forgotten! This med helps her GVHD which she still struggles with to this day!

Please pray that our transition to Luries would be a smooth one. We are not going to go back to a BMT team, but rather back to her pediatric oncologist. Our prayer is that we would keep Ella Joy so well isolated especially during the flu season so she would not get sick and have to be hospitalized again.

A praise report is that we are looking forward to heading back to Chicago mid October! Please pray for our flight back and that we would have everything we need to help Ella Joy with meds. Like bringing an icepack for her refrigerated meds. In case of a delay, we need to bring all her meds with her. Can you imagine them testing all 30 bottles because they are almost all liquid!

We need to have Ella Joy seen immediately after we arrive in Chicago. Please pray that as there very well may be some changes in regards to her tapering off pred, please pray that Luries would catch all those changes and make the appropriate med alterations as needed.

Mike is going to continue traveling for work even after we fly back to Chicago. Please pray that I would be able to get Ella Joy and Asaph safely to RMH and Luries by myself. Here in Seattle, it has been amazing living walking distance from SCH and a half hour shuttle to SCCA. When we go back to Luries, it will mean long train rides and uber rides.

We are so appreciate of everyone who have been so supportive to our family throughout her first diagnosis of stage 4 non-hodgkins t-cell lymphoma cancer in 2013 to her relapse with t-cell leukemia this past March 2017 to her chemo, radiation, and transplant on July 3rd to even now. We are extremely blessed to have such amazing family and friends in our lives!

Seattle has this very interesting and intriguing society of people who paint rocks and hide them along the walking route to the hospital from RMH. Ella Joy and Asaph have often been very excited finding them. They are fun for the kids to find, and some of them have inspirational words of encouragement, or beautiful intricate paintings. The sun can cause GVHD on Ella Joy’s skin, so we don’t walk anymore post-transplant, however, when we did, Ella Joy and Asaph had their eyes fixated on tree branches and bushes where they would frequently find hidden painted rocks. For me, on our walks to and from the hospital … with many of the daily challenges and struggles, I needed to fix my eyes on the Rock that is higher than I.

“From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I.” – Psalm 61:2

We still need your prayers Saints of God! There are still so many things that could go wrong, and we would like to ask you to continue praying for God’s protection over Ella Joy’s body.