GVHD & MVSD

**Update**

8/26/17 Sat

Day +54

Thank you all for praying for Ella Joy during this time she is continuing to fight graft versus host disease.  She has been on prednisolone for over a week now, and she will slowly be tapering off 10% each week.  The 3 hormone meds she is taking has caused her insomnia as well as leg, foot, shoulder, hand, and whole body aches, pains, fatigue, and there have been times she could not walk and needed to use the wheelchair.  Just last night, she told me she was dizzy and was unstable when walking.  Many times in the middle of the night, I have to massage her legs and shoulders so she can fall asleep.

Please pray that God would strengthen her as she will need to continue taking prednisolone, beclomethasone, and budesonide up until day 100 which is Oct. 11th!  The nutritionist was concerned about her calcium and vitamin D, so we added calcium carbonate to her nighttime meds as well as vitamin D to her day time meds.

Please pray that as Mike will be traveling to Chicago for work tomorrow, that Ella Joy would not get a fever and have to be admitted to the hospital inpatient.  Asaph has been off school for one week now, and will continue to be off for another week, so I am home schooling the both of them in between hospital clinic and lab visits.

I know Ella Joy was super bummed that she will have to miss an entire year of school, but with all the board games we have been playing, I am proud to say she has excelled in connect four and uno!

Please continue praying for zero cancer and negative mrd with us.  The odds that Ella Joy will relapse is against us.  There is a 70% chance.  Please pray that every trace single cancer cell would truly be eradicated forever.

Since Oct. 11th will be our 100th day, please pray that the BMT team will allow us to go back to Chicago.  If there are any complications, or if her GVHD continues, then they might set back the date, so please pray that she will be well enough for them to send us home!

Even when we go back to Chicago, we will need to have weekly lab draws and check ups.  Please pray that things would work out especially when Mike needs to go on work trips.

Last year, Asaph was in half day kg, and went to a different school than Ella Joy.  It was a challenge to drive him to school and then drive back home to walk Ella Joy to school.  This was the year I was super excited to have them both walking to full day school, and with all the free time, I was planning on tutoring.  But as Robert Burns wrote, “the best laid plans of mice and men often go awry.”  Or even better said by Solomon “The heart of man plans his way, but the Lord establishes his steps.” – Proverbs 16:9

Thank you so much for never giving up praying for Ella Joy!

*Update*

8/18/17 Friday

Day + 46

Ella Joy has been on prednisolone along with beclomethasone and budesonide for four days now.  The praise report is that she no longer experiences projectile emesis or tummy pains needing dilaudid.  However, these hormones have side effects of their own.  Ella Joy is experiencing insomnia, and she has not been sleeping at night for the past few days.  She is tired but unable to fall alsleep.  In the middle of the night, I have to massage her hands and legs and feet, because they are sore and in pain.  It has been extremely exhausting for her, and on top of sleepless nights, she has not been able to be active and asks for the wheelchair frequently because she is too tired to walk.  Her legs and feet and hands continue to feel fatigued.  Please pray for God to strengthen her and that she would soon regain her strength.  Please pray the tiredness and pains in her body would soon go away.

Her face has been flushed bright pink these past couple of days, and she has been feeling warm although she has not officially had a fever.  I am praying that we will not have to be inpatient again.  The last time, they not only failed to give her scheduled IV fluids with magnesium, but I caught a nurse giving Ella Joy a dose of zofran a half hour after giving her kytril.  I stopped her and told her that she cannot give zofran and kytril at the same time because they are from the same family of anti-nausea meds.  Giving them together can cause even more severe side effects.  These are things that I happen to know but they should know.  Thank God I was there to stop that nurse!  That is God’s divine appointment right there!

Please continue praying for Ella Joy and that the hormones would help her GVHD to cease so she can be tapered off as soon as possible.

Thank you so much for remembering Ella Joy in your prayers!  We appreciate it!

8/14/17 Monday

Day + 42

Thank you so much for your prayers when we rushed Ella Joy to the ER Friday night.  Ella Joy felt nauseous and threw up in the ER.  It was late, and they felt her lungs sounded congested, so they woke her up to take a chest x-ray.  The np told me that Ella Joy had 2 boluses, and if she needed a third she would be sent to the ICU.  I had no idea what she was talking about since she had one bolus of fluids at the er, and just some fluids during her upper endoscopy and flex sig earlier that day.  She gave me wrong information and freaked me out when I was already anxious about Ella Joy’s fever that had been rising.  Then, when they drew labs, her hematocrit dropped from 28 to 16.  They were freaking out that it was so low so quickly, and they redrew her labs to see her hematocrit was actually 25.  She would later get a blood transfusion while inpatient, but this set us back so we were not able to get a room to be admitted until closer to 1am in the morning.

Since it was the weekend, there was no pt or ot, and Ella Joy was mostly bed bound.  She was already so tired from the lengthy night in the ER, and slept for the majority of our 48 hours inpatient.  This concerned me since her last OT appointment, the therapist told me that Ella Joy is noticeably weaker and not as strong as she was pre bmt.  She will need weekly OT/PT to regain her strength.  Please pray that she would be able to do her stretches, exercises, and strive to be more active so she can achieve this goal.

The pathology report from the upper endoscopy and flex sig are not in yet, but due to the initial images from the camera, it looks like Ella Joy suffers from tummy pains and nausea indeed due to graft versus host disease.  Asaph’s cells are attacking Ella Joy’s cells.  We will need to add to our repertoire of meds prednisolone, omeprazole, beclomethasone, and budesonide.  Please pray for God to protect Ella Joy while she is on these steroids.  For the extended times Ella Joy took Prednisone the first time she went through chemotherapy, her legs several times were in so much pain that she could not walk for extended lengths of time.  There were times she was wheelchair bound while taking prednisone.  Please pray that the steroids would work immediately so we can slowly wean her off these hormones.

The BMT team is not sure what caused her fever.  It could be a variety of causes: the procedures she had earlier that day the upper endoscopy and the flex sig (where her tummy was in major pain), GVHD, or the fact that I cut her big toe nail too deep when clipping her ingrown toenail, and it turned red and irritated.  (we are needing to soak her toe in Epsom salt 3X a day). Please pray that from this point on, she would not get fevers.  Especially when Mike is on his work trip coming up at the end of this month.

When we were getting discharged Sunday night, they forgot to give Ella Joy IV fluids with magnesium, so I had to prepare it at home and wait 4 hours to heplock her line.  Ella Joy threw up her meds right before discharge, and by the time we re-administered the meds to her, it was closer to 10pm.  I started her fluids at 11am, and didn’t get to heplock her until 2am.  Then, we had to wake up at 6am to go to labs and clinic at SCCA.  While we were waiting, she threw up all over herself.

By the time we were done with clinic and labs at SCCA, we shuttled back to SCH to the pharmacy. Prednisolone can cause insomnia, so we wanted to give her the hormones as soon as possible.  Unfortunately, the meds were not ready and we had to wait an hour before we could pick them up.  Please pray for me as I administer these meds to her.  There are 17 meds I need to give her daily in the morning, and then again at night, and some meds like beclomethasone, I need to give her 4X a day!  It is a lot to remember, and furthermore I need to be prepared with the tools to set her up for success.  For example, for the beclomethasone, Ella joy likes this oily med with mango calpico.  For the budesonide, she likes the capsule opened, and the beads I sprinkle on a spoonful of vanilla ice cream with strawberry swirl.  It’s a good thing we are isolated at home so I don’t have to carry these things around, but I need to be extra clever when we are at clinic and appointments when having to give her these meds when we are not in the comfort of our own apt.  Please pray for wisdom to know how to give her these meds when these accompaniments are not available.

Graft versus host disease is not something that we want Ella Joy have.  She has been suffering from severe tummy pains where she needed narcotics to ease her pain as well as projectile vomiting.  However, several attendings from our BMT team have said that although it is not favorable to have it, there could be graft versus leukemia in the midst of it.  This is our huge prayer request, that although GVHD is undesirable, we pray that as Ella Joy has been throwing up and experiencing stomach pains, Asaph’s cells would not only be attacking Ella Joy’s good cells, but attacking any leukemia cells that might be hiding in her bone marrow or spinal fluid.

It kind of reminds me of the spiritual battles and struggles we face each day.  No battle or struggle is desirable.  Not having to fight certain struggles would actually be ideal!  But, if there is going to be a spiritual battle or a struggle, may we fight the good fight and come out stronger than before!  May we overcome those sins that entangle us, and get rid of them once and for all!  The enemy would love to keep dangling those sins in our face, but with the power of prayer and His Word and His supernatural empowerment, we can overcome!  It’s MVSD (me versus sin disease)!

So get rid of your old self, which made you live as you used to – the old self that was being destroyed by its deceitful desires. Your hearts and minds must be made completely new, and you must put on the new self, which is created in God’s likeness and reveals itself in the true life that is upright and holy.” – Ephesians 4:22-24

We want to thank you once again for all your continual prayers and encouragement you have given to us!

I would like to end this post with one of my favorite drawings Ella Joy made soon after we moved into our isolation apartment.  She is many times super bossy with Asaph, and they argue over pokemon cards just about every day, but I know for sure deep in her heart, she is so thankful to God for him, and for the fact that he helped save her life.

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chimerism doxology

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*Update*
8-11-17 Friday
Day +39
 
*Update*
 
We will for sure be inpatient for a minimum of 48 hours. Her lungs sounded “cloudy” so she had to get a chest x-ray. I felt so bad because I know how tired she was! Please continue praying that she can be well enough to leave after 48 hours.
Please pray for Ella Joy. She had her upper endoscopy and flex sig earlier today, and had major stomach pains and she needed IV dilaudid (hydromorphone) and IV tylenol. Just now she has a fever tonight, and we rushed her to the ER.
 
Please pray with us for Ella Joy that the fever would go down, and that we would be able to go back to our isolation apartment soon. Please pray with us that she would not have any serious infections.
 
They are talking about keeping her inpatient, but please pray that we would do what is best for her at this point, even though I know she really doesn’t want to go back to being inpatient!!! She was crying when we told her she needed to go to the ER. She has been through a lot today.  Right this minute she is throwing up.
 
Thank you for your prayers!
 
Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go.
– Joshua 1:9

8/7/17 Monday

Day + 35

We are so thankful for each one of you who continue to keep Ella Joy in your hearts and prayers!  Tomorrow, it will be 2 weeks we are outpatient in our RMH isolation apartment.

Since Ella Joy continues to have nausea and stomach pains, the BMT scheduled an upper endoscopy and flex sig this coming Friday 8/11 at 11am to check for GVHD.  Please pray everything would go smoothly as they insert these cameras from both ends (throat and bottom) both with biopsies to see if Ella joy has GVHD.

The most current CT scan shows that there are still unknown nodules in her lungs.  Please pray that these would disappear with meds and time.  If not, they will have to do a lung flush and put a third camera down for a pulmonary endoscopy.

Asaph and Ella Joy stay in the apartment for the most part.  During the week, Asaph goes to Hutch summer camp and Ella Joy goes to SCCA and SCH for labs, appointments and procedures.  Two times now, Ella Joy and I saw Asaph off to the bus, and soon after, Ella Joy asked me where Asaph was.  It was alarming the first time, but the second time, I am considering calling her radiologist and talking to him about this noticeable short term memory.  Please pray that she would be able to remember things and that this short-term memory loss would not be a long term side effect.

Ella Joy is getting more interested in foods, and eating a bite of sorbet here and there, and a funyun every once in a while, but please pray that we would have wisdom when it is time to wean her off her feeds and plan for her to eat real foods.  Before we head back for Chicago, I would love to have her completely off her Nourish feeds and onto real foods.

Ella Joy had a nasal wash and swab, but she tested negative for any viruses.  She had a very slight runny nose at the time, and continues to have a mucositis cough.  We are so thankful she doesn’t have any viruses.  Please pray that she would continue to use hand sanitizer so she can stay away from germs and viruses, especially during our shuttle rides to and from sch to scca as well as during our clinic and hospital visits.

Mike is planning on traveling to Chicago for work sometime within the next few weeks.  Please pray that when he is away, Ella Joy would not need to be inpatient, and that the schedule would work out so I can take Asaph to the bus for summer camp, and also take Ella Joy to her appointments at SCCA and SCH.

Asaph has been busy with summer school.  A few days ago, I picked Asaph up from the bus that shuttles him home from Hutch summer camp.  I asked him how his day was, and he sighed and said that he was extremely stressed out.  I asked him why and this is what he said, “My friend doesn’t believe in God!  I told him that God is real and you should believe in Him!”  I was so worried he had a bad day at camp, but if this is what stresses him out, then I believe God is answering the prayer request to raise mini Kingdom workers!

In Greek mythology, the Chimera was a creature with the head of a lion, the body of a goat and tail of a serpent.  In medical terms for Ella Joy, the term chimera is used to designate Ella Joy’s body with cells derived from Asaph.  The phenomenon of co-existence of cells from two different organisms (evolved from two different zygotes) in one body is called chimerism.  All this to say that Ella Joy has 100% chimerism!  Praise the Lord!

It is my prayer that in the same way that Asaph’s cells were implanted into Ella Joy’s bone marrow, God’s Word would be implanted into their hearts.  That the Father, Son and Holy Spirit would be at work in their lives, as they live for His glory.

All this talk of chimerism reminds me of Thomas Ken’s doxology,

“Praise God from whom all blessings flow;

Praise Him all creatures here below;

Praise Him above ye heavenly host;

Praise Father, Son and Holy Ghost.

Amen.”

“Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit” – Matthew 28:19