Do not fear; I will help you

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.

IMG_0846Thank you for never ceasing in praying for Ella Joy and our family.  We have such amazing friends and family and cannot thank you enough.

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A mere whisper from God is enough

***update***

5-9-18 Wednesday
Day +313

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!

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He always lives to intercede for them

*Update*

3-19-18 Monday

Day +248

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.

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Deep into the love of God like a nail

***Update***

2-19-18 Monday

Day +234

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

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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