GVHD & MVSD

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

Spiritual Prokopen

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*Latest Update*

8/2/17 Wednesday

Day +30

This morning, Ella Joy was feeling extremely nauseous.  I had to turn off her tube feeds at 3:30am because she was NPO, and then I gave her some anti-nausea meds as well as some of the meds she could take before her procedure.  Ella Joy had a bone marrow aspirate.  The anesthesia made her especially lethargic this time around.  She also had a ng tube replacement, and afterwards we went to radiology for an abdominal x-ray.  Since she had been saying that her tummy feels fulll and watery, this x-ray will help rule out some possible complications.

Tonight, Ella Joy was crying because of the pains from her BMA.  I gave her 1ml of dilaudid, but had to page the oncologist because I wasn’t sure if I could also give her oxycodone or Tylenol for her pains.  After I gave her the hydromorphone, she continued to cry, and I was just about to give her more pain meds when she fell asleep.  Please pray that the pains from the BMA would go away.  She has had frequent BMAs in the past, but she never needed pain medication afterwards like she did tonight.

Tomorrow we have a packed day at SCCA.  We start with labs in the morning.  Then we meet with the nutritionist.  Afterwards, Ella Joy will get another EKG (since the QT intervals are prolonged likely due to voriconizole). Then, we have an appointment with clinic and her post BMT team.  Then we shuttle back to SCH for another CT chest scan.  Please pray with us that the nodules will be gone and that we would hear the best news possible after they read her scans for tomorrow!

Thank you for praying for Ella Joy and keeping her in your prayers!

“Those of steadfast mind you keep in peace—because they trust in you. Trust in the Lord forever, for in the Lord God you have an everlasting rock.” – Isaiah 26: 3-4

*Update*

8/1/17 Tuesday

Day + 29

The day after we discharged, Ella Joy had been very nauseous, and when we were in clinic at SCCA, everyone noticed she did not look very well.  She was throwing up and she also had a bloody nose.  I had to give her dilauded a couple times for stomach pains.  Since then, Ella Joy has continued to feel nauseous, but she is slowly seeming to get better.

We had an appointment with infectious diseases.  They noticed after her PT chest scan that there were new nodules in her lungs.  They are thinking it is fungal, but there is no way to know for sure unless they put a camera down there.  They will get another chest CT scan in a week and decide if they want to do the camera.  Please pray that these new nodules will not be anything serious, and please pray that as we continue to give her voriconizole, the nodules will soon go away and disappear.

Another thing I noticed is that during the last 2 labs Ella Joy had at SCCA, it was harder to collect her blood.  She had to be asked if she could give deep breaths and move her arms around in order to collect the amount she needed.  Please pray that there would be no serious problems with her double lumen Hickman which goes directly to her heart!

In addition, Ella Joy has been saying that her tummy feels full or watery.  We will be getting an x-ray to make sure this is not due to any serious complications.  Ever since she got her NG tube, she has said this, but the degree is seeming to get worse.

I always encourage Ella Joy to walk short distances to get some exercise, but the last couple of days, she asked for the wheelchair even though we walked very short distances.  She told me that her legs were sore.  Please pray that God would give her strength and healthy bones to be able to be as active as possible.  She is continuing to take calcium carbonate to strengthen her bones.

Today, we saw Asaph off to the shuttle bus to go to Hutch summer camp.  About an hour later, Ella Joy asked me where Asaph was.  I told her he was at summer camp.  She told me that she had forgotten.  I know the radiologist told me that sometimes it takes a year to see the forgetfulness and slower thinking processing, but it really alarmed me that she had forgotten that Asaph went to summer camp as he usually does.  We played Battle Ship and she totally beat me as usual, but she kept forgetting when it was her turn, and at times sat there waiting until I reminded her it was her turn.  Please pray that this would only be short term forgetfulness, and that God would help keep her mind sharp.

A few additional prayer requests … please continue praying Ella Joy would not develop any GVHD.  We are also keeping her out of the sun (with lots of sunscreen) and long sleeves in 90 degree weather!  The sun light on her skin can start up GVHD!

Please pray that Ella Joy would slowly but surely gain an appetite and when the timing is right, we can slowly wean her off her tube feeds.  So far, she is only sampling different foods, and taking one or two bites.  Please pray that in addition to weaning off of tube feeds, she would also be able to wean off her night time IV fluids and drink enough on her own and take magnesium orally without any diarrhea.

Thank you for remembering to keep Ella Joy in your prayers!  She is doing remarkably well for being discharged at day +22, and seeing that we have only been out for one week, we know it is the prayers of God’s people that encourage us and help us during the most challenging times.

“I sought the Lord, and he answered me, and delivered me from all my fears.” – Psalm 34:4

7/24/17 Mon. Day +21 (original post)

White blood: 1.9

Hematocrit: 31.6

Platelet: 66

ANC: 979

Tonight is the last night we are here!  Tomorrow we will be discharged.  Ella Joy will see our RMH isolation apartment for the first time tomorrow night!  I tried to unpack everything in the last few days so it would be ready for her, especially the shelves of medical supplies and meds!

Ella Joy was feeling nauseous again tonight, and she threw up her feeds again.  Please pray for her nausea to subside, especially as we are getting ready to be discharged tomorrow.  We will have lots of appointments at SCCA where we take the shuttle, and I am praying that she would not be nauseous for the shuttle rides, especially after giving her meds.

I had a refresher course for night IV fluids.  I have a plan that each night I will give her a bath, then start the IV fluids, and then four hours later, hep lock both lines of her double lumen Hickmann.  I just need to make sure I have a complete schedule up with all her meds and the times with reminders on my phone, and if I am going to shuttle to SCCA, I need to remember to bring the meds and syringes along with me.  I may even have to re-administer them to her if she throws up on the shuttle.  Note to self, I gotta bring the puke bags everywhere we go.

Please pray for our 100 days of isolation.  I know it will be hard on Ella Joy and Asaph.  They are at an age where they love playing with their friends.  After tonight, it will be only our family hanging out in our isolation apartment.  Please pray that they would not complain or feel sad, and may they know this is necessary for us to keep Ella Joy safe from germs.

Please pray that I would be able to give Ella Joy all her meds through her NG tube without any troubles.  I know the key is pushing the syringe slowly.  Please pray that I would not forget any meds, and that in addition to her feeds, I would learn to be proficient at giving her IV fluids at night too.

Please pray that Ella Joy would not have to be re-admitted for any fevers or GVHD.  If we need her to be re-admitted, it would disrupt Mike’s work schedule and Asaph’s going to school.  We are praying for things to go as smoothly as they have been going.

And as always please pray for ZERO and NEGATIVE, and absolutely no relapse!

“Progress” is from the Greek term prokopen, derived of two roots (pro, “forward,” and kopto, “to cut”).  When I think about Paul’s 2-year Roman imprisonment, I see that in the midst of his troubles, Paul had the right attitude and outlook.  He saw opportunities to advance the gospel.  In our isolation apartment, please pray that I would be able to find opportunities to raise 2 little Kingdom workers.  Please pray that each day would not merely pass by, but it would be an opportunity to make progress and to grow in the Lord.  Whether we are praising Him with worship songs, or reading the Bible, may we like Paul move forward in sanctification.  May we continue cutting through obstacles by His mighty power.  Each day toward 100, may we make spiritual prokopen or spiritual advancement.

We are so thankful to God that we are able to leave at day +22!  We know armies are praying for Ella Joy, and couldn’t be more thankful!

“Our prayers for others flow more easily than those for ourselves.  This shows we are made to live by charity.” – C.S. Lewis

“Praying at all times in the Spirit, with all prayer and supplication….“ – Ephesians 6:18

Eagle Soaring Prayers

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********Latest Update********

7/23/17 Sun. Day +20

White blood: 1.9

Hematocrit: 32.9

Platelet: 29

ANC: 747 (Boeing, LOL)

Today was a great day for Ella Joy.  She it seems like her mucositis is slowly getting better.  The only thing that remains is a cough, but she doesn’t use her suction tool as much.  There were days her mucositis was so bad that the cup attached to the wall was filled almost to the top!

It was another typical morning at rounds … I had my clipboard with the labs and notes and all the questions I had.  At the end, the attending was smiling at me, and I wasn’t sure why.  She commented, “You are just so put together!”  A few other BMT team members had made comments about how I seem part of the actual medical team or how I effectively advocate for my daughter.  To be honest, I think I am just a normal parent doing what ordinary parents do for their children!

However, what is not ordinary, is the amazing power of prayer, and how God has used so many of you to pray for Ella Joy and encourage our family!  There is nothing ordinary about that!  Despite the extreme nausea, bloody noses, and mucositis and pain, we know that with the work up that she had, it was expected that she would not do as well as she has been.  This is 100% a testament of the power of Our Healer God and the storehouses of prayers being poured out for Ella Joy.

“It is about the greatness of God, not the significance of man. God made man small and the universe big to say something about himself.”
— John Piper

When I went over all the meds I need to give to Ella Joy, I have to admit, I felt overwhelmed.  There are a lot more than before.  And some like tacrolimus must be given at the exact times.  I will also be giving her IV fluids at night.  Administering all her meds is a lot of responsibility, and there will be lots of appointments at SCCA too, but please pray that I would have wisdom and strength to do it all.  In regards to the 4 anti-nausea meds that Ella Joy is currently on, the pharmacist asked me if I wanted to do it the easy way, or the hard way (at all different hours of the day and night) to help prevent her nausea.  I told him that I do not mind having to wake up every few hours if it means that it could help with her nausea.  Please pray that I would be prepared from the transition from the hospital to home, and that Ella Joy would be ready too.

Please continue praying that God would continue protecting Ella Joy’s body.

The LORD your God is in your midst,
a mighty one who will save;
he will rejoice over you with gladness;
he will quiet you by his love;
he will exult over you with loud singing.

  • Zephaniah 3:17

*********Update*********

7/22/17 Sat. Day +19

White blood: 1.8

Hematocrit: 31.1

Platelet: 37

ANC: 787

So far, Ella Joy does not exhibit any GVHD but according to the BMT team, it is still early.  They sometimes say a little GVHD is a good thing, but I am praying that graft versus leukemia would be at full force attacking any lingering or hiding cancer cells in Ella Joy’s body.  Sometimes, even the sun on her skin can cause GVHD, so anytime we are out and about, Ella Joy will be sure to have on lots of sunscreen, big floppy hats, and an umbrella for shade.

In preparation for Tuesday’s discharge, I am meeting with the pharmacist tomorrow morning to go over all the meds I need to give to Ella Joy.  I took pictures and noted the amounts I have at home, and there will be a lot more meds added to the list.  Please pray that I would be on top of giving her all the meds she needs, and that her stomach will be able to handle all the meds without her throwing them all up.

We appreciate your constant prayers our faithful friends!

“And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.” – 1 Peter 5: 10

********Update********

7/21/17 Thurs. Day +18

White blood: 1.4

Hematocrit: 31.8

Platelet: 59

ANC: 58

Today I learned how to give Ella Joy fluids at home through her line.  Last night, Ella Joy had such a bad mucositis cough that it not only made both of us stay up most of the night, but she ended up throwing up again after coughing so hard.  We are so thankful to God that her nausea doesn’t seem as bad as it used to during the day hours.

We found out that if everything continues to progress, Ella Joy will be discharged as early as Tuesday!  Please pray with us that I would learn everything that needs to be done at home.  She has a lot of meds, and even more now that her IV meds are being converted to NG tube meds.  Please pray that as these meds go down her tube, it would not cause her to become any more nauseous than she already is.

Please pray that as much as possible, Ella Joy would be able to get her dressing changes and labs done at SCH.  I know SCCA prefers for her to do everything there, but we definitely prefer to do everything at SCH.  Not only is it closer and more convenient, but it is also where she feels more comfortable.

Once again, her tube feeds spilled all over her again.  I believe she is due for a new NG tube, but we will wait for the next procedure when she is sedated to switch her tube.

Today, we were privileged to have 3 different visits with people we love.  It was just so sad that Ella Joy had to be isolated … this is just the beginning of our 100 days of isolation, and even one whole year of no school and no crowded places.  Please pray that Ella Joy’ spirits would be lifted knowing that we have such phenomenal friends who lift storehouses of prayer for her.

“The Lord is my strength and my song; he has given me victory. This is my God, and I will praise him—  my father’s God, and I will exalt him!” – Exodus 15:2

********Update********

7/20/17 Thurs. Day +17

White blood: 1.1

Hematocrit: 32.2

Platelet: 64

ANC: 544 (Praise the Lord, Ella Joy is officially engrafted!)

So very thankful that Ella Joy had another ANC higher than 500 two times consecutively!  I actually glanced at her lab paperwork when I was still half asleep, and read it wrong, and had thought it was lower than 500.  It has definitely decreased since the other day, but the fact that it is higher than 500 makes it official!

Last night was tough for Ella Joy because a new day nurse took on a night shift for the very first time for Ella Joy, and she kept waking Ella Joy up while she was trying to listen to her back.  I woke up to Ella Joy crying and asking her to please stop.  I thought she was doing vitals as sometimes the arm hug can wake her up.  I think Ella Joy had been so tired from many nights of bloody noses and throwing up, so when they have been giving her melatonin to help her sleep, she seemed even more irritable.  We prefer the night ninja nurses and night ninja CNAs who come and do her vitals, draw her labs, give her IV and NG meds, and we don’t even know it and sleep through it all!

The other day, I had asked to talk to the pharmacist on the side to discuss ways we could add another anti-nausea med to Ella Joy’s list as she had been throwing up her tube feeds and sometimes even meds and blood.  This time, I was able to get a meeting with a pharmacist, and after talking with her, she changed her as needed meds to scheduled but staggered them out.  For the first time since Ella Joy started cranial and TBI radiation, she did not throw up several times over night!  So thankful for these little victories in Christ!

Today I was able to move all our belongings to the isolation apartment across the street from the first room we stayed in.  I realize we are going to be spending a whole lot of time in this apartment!  Please pray that Ella Joy would not be bored or sad, but that we would be able to spend quality time together and make lasting memories even if we cannot go on fun trips and camps for the summer.

I am very excited and thankful to God that Ella Joy engrafted on day +16, but I realize that we need prayers that there would be no trace amounts of leukemia cancer cells hiding in her body.  A while back when we originally thought Ella Joy needed a BMT, my oncologist told me the stats, and again our oncologist here confirmed it that Ella Joy has a 30% chance to survive this BMT transplant.  In other words, there is a 70% chance she will relapse again.  The reality is that the odds are against us, but we have a mighty God who fights for us, and so many amazing friends and family who fight on their knees in prayer for Ella Joy.

Please continue praying for zero and negative.  Thank you for never giving up!

“The Lord will fight for you; you need only to be still.” – Exodus 14:14

 

 

 

 

 

 

 

 

*******Update*******

7/19/17 Wed. Day +16

White blood: 1.1

Hematocrit: 32.6

Platelet: 28

ANC: 737 (if she gets another ANC of over 500 tomorrow, she will be officially engrafted!)

This morning we agreed with pain management that Ella Joy no longer needed the PCA button.  She had not pushed it for 36 hours.  She is definitely headed in the right direction.  Her mucositis continues and she has this cough that keeps her up at night.

Late last night, she was extremely nauseous, and she threw up her feeds and got a bloody nose too.  Then, in the middle of the night, she told me her back felt wet.  All her feeds from her tube were all over her bed.  She needed to be wiped down, we had to change all her caps and lines and once again the entire pole was switched out.  It was another night of little sleep.

Ella Joy got platelets this morning.  Hopefully that will help with her bloody nose.  A huge prayer request we have is prayer for Ella Joy’s nausea.  This seems to be one of the most challenging side effects that she is continually facing in addition to bloody noses. Mike’s mom left to go home tonight.  We are thankful for the time she helped watch Asaph, but it is now time for her to seek medical help so she can feel better soon.  Please continue praying for her.

I am so thankful so announce that we were able to get the keys for the RMH isolation apartment!  I moved in some of the necessary items like Ella Joy’s medical supplies tonight, but I will have to do most of the moving tomorrow.  Please pray for me to be able to smoothly move it all out by tomorrow!  This is truly another answered prayer!

We are not really sure how everything will work out with Mike working and myself and Ella Joy being inpatient, but we know He will help us work it out, and we are extremely thankful that Hutch has a summer camp that keeps Asaph busy for the summer!  Please pray that things would work out with Mike’s work and that he would be able to help Asaph get ready for summer camp in the mornings.

We appreciate and covet all your prayers for Ella Joy!

“The eternal God is your refuge, and underneath are the everlasting arms.” – Deuteronomy 33:27

*****Update*****

Day +15 Tuesday

White blood: 0.7

Hematocrit: 31.7

Platelet: 51

ANC: 326 (Dr. Jehovah Rapha in the House!)

I apologize for my faithful followers that read these updates to pray specifically for Ella Joy.  I wrote out the update, and then she was nauseous and had a bloody nose and threw up, and I forgot all about it in the midst of helping her.  It seems like all the nights of staying up and helping Ella Joy have accumulated, and I was extremely exhausted last night and even tonight.  Ella Joy continues with nausea and throwing up tube feeds, and bloody noses.  The pain team came by in the morning, and noticed she has not been using her PCA button as often as they expected which is a good thing, but I know she loves the immediate pain relief in real time as opposed to waiting 15 minutes for the nurses to get the narcotics and then administer it.

Today I went to the class at SCCA called “managing care at home” that was cancelled the week before because the nurse was out of town and no one bothered to tell the class.  I went to it, and it was supposed to be able line care and administering drugs through her double lumen Hickman line.  It was not.  It was all about transplant and all the info I had already read about through the booklet I was given.  At this point I had only been hep locking her lines.  My transition nurse gave me wrong information again, and next week I will have to go to that line care class and ask for more CNAs to watch Ella Joy.

Please continue praying for Ella Joy, as you can see, her ANC is slowly but surely rising.  Please pray God would protect her against infections and germs, and that she would be able to get there with two days of ANC of 500.

Please pray that her nausea would decrease, especially when we are ready to be discharged.  It is something she struggles with throughout the day and especially at night, and I realize there are many times there are not enough anti-nausea meds in our arsenal, and we have to resort to having her throw up.

Please pray for Mike’s mom.  She was not feeling well the last couple of days.  Just as it is not easy for me to constantly take care of Ella Joy, I know it is not easy for her to care for Asaph for such a long period of time.  Please pray for her to feel better soon.  We are extremely grateful for the sacrifices she has made this far to stay here and help us care for Asaph when Mike is at work and when Ella Joy and myself are inpatient.  Who else would make Asaph crispy hash browns and scrambled eggs In the morning?

Please pray for a peaceful night of rest for all of us.  As Ella Joy’s ANC rises, may her mucositis  decrease and  altogether disappear!

Thank you saints of God!  We appreciate your love and prayer support!

“The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desires of those who fear him; he hears their cry and saves them.” – Psalm 145: 18-19

****Update****

Day +14 Monday

White blood: 0.4 -> Praise Jesus

Hematocrit: 24.4

Platelet: 67

ANC 186 -> Hallelujah!

A while back, during rounds, the BMT team decided to lower Ella Joy’s feeds to 50 ml/hr to help with nausea.  A few days ago, Ella Joy asked me if she could raise her feeds back to 75 ml/hr.  Because she has successfully been on her tube feeds at 75, today, during rounds, the nutritionist announced that she no longer needed to be on TPN!  This is a great milestone because it means that it is one less thing to take home and be discharged with.  Last night, the on-call oncologist saw that Ella Joy’s nose was bleeding profusely, and she needed platelets.  He told me he could raise her threshold to 30, and possibly even 50 if she needed it.  Today during rounds, the attending was saying how she thought it was fine to keep her threshold at 20 platelets, and then she asked me how I felt.  I told her to be honest, I felt safe raising the threshold, because I did not want her nose to be bleeding all night and morning as it had before.

Ella Joy continues struggling with extreme nausea.  She is currently on 4 scheduled anti-nausea meds, and she has been throwing up her feeds, and many times with blood.  We are praying that it would be something that would get better with time, but as she had the maximum radiation including cranial and TBI, we understand that she is expected to get the maximum nausea that comes along with this transplant.  It is such a horrible thing to have to see your child throw up tube feeds and blood multiple times a day, and not be able to do anything about it.

Please continue praying with us that Asaph’s cells would engraft nicely into Ella Joy’s bone marrow, and that the mucositis she struggles with will soon go away!  She continues to have throat pains, and she uses a suction tool connected to a cup and always fills the cup daily with blood and mucus from her mouth.  Please pray that all cancer cells would truly be eradicated forever this time!

We cannot thank you enough for praying through the length for Ella Joy!

“My grace is sufficient for you, for my power is made perfect in weakness.” – 2 Corinthians 12:9

***Latest Update***

7/16/17 Sun

Day +13

White blood: 0

Hematocrit: 27

Platelet: 48

ANC 92 (Thank you Lord Jesus!)

92!  That is Ella Joy’s ANC since night labs of day +12!  We are so extremely thankful to God for such a wonderful surprise!  Well actually it was more an answered prayer as last night I wrote:

“If it is the Lord’s will, please pray her ANC would come sooner than later.”

Clearly, so many of you were praying for her ANC, and sure enough, it was an answered prayer that her ANC came back at 92!  We are praying it would only rise from this point on, as sometimes it can go back to zero.

Also, it is not a solid yes, however, if all things go according to plan, and Ella Joy has an ANC of 500 for two days in a row, we will be able to move into a RMH isolation apartment.  This is another answered prayer request.  Please continue praying that she would be able to be discharged accordingly, and that we would not have any problems moving into the isolation apartment.

Ella Joy had another bloody nose throw up tonight.  We tried afrin and ice again, and she is going to get another platelet transfusion tonight.  The threshold was bumped up from 10 to 20, and now to 30.  We may even have to raise the threshold to 50 if she continues to have continual bloody noses.  Seeing an ENT and packing her nose would be the next steps, but please pray we would not have to take those next steps, and that God would help the platelets she is getting to help clot the blood flow.

Ella Joy also got another fever today.  She has been getting a good number of fevers, and we are praying that it would not mean any infections at this point.

We are very eager to find out what her ANC will be tomorrow.  Please continue praying for Ella Joy.  The past week, it has been one thing or another with night time pains, nausea, bloody noses, fevers, and staying up.  Last night, the nurse brought her anti-nausea meds late, and she ended up throwing up all over her lines.  We had just changed her pole with new pumps and lines, and we had to once again change out all of her new tubes and get a new pole of pumps.  It took a very long time, and added to yet another night of almost no sleep.

Thank you for standing by us in prayer!  Please cast our prayer requests to Him because we know the Lord cares for Ella Joy!

Cast all your anxiety on him because he cares for you.” – 1 Peter 5:7

**Update**

7/15/17 Sat

Day +12

White blood: 0

Hematocrit: 26.5

Platelet: 61 (after transfusion)

ANC 0

Ella Joy’s nose bleed continued throughout the night into the morning.  The longest it stopped bleeding was 10-15 minutes.  We used afrin and ice.  It seemed to stop the bleeding for a few minutes, but it continued and it was at times both nostrils bleeding.  It was another night into the morning of no sleep for the both of us again.  Ella Joy had been given melotonin to help her sleep, but since her nose could not stop bleeding, she cried and told me that she just wanted her nose to stop bleeding already so she could sleep!  I was expecting her pain to be a lot worse because she had mtx, but the BMT team told me that mucositis pains usually come a day or two later.  They reminded me we are in the hardest week right now.  Please pray for comfort for Ella Joy and that He would continue to protect her body.

Through out the day and into night, Ella Joy continued to feel nauseous, and she did have emesis and mucositis pains, but I was very proud of her that she independently pressed the PCA button sometimes without even me knowing. Before she got the PCA,  I usually would call the nurse to administer the pain meds and document every single time she had emesis, pains, and bloody noses, but now that she is independently pressing the button whenever she feels pain, I sometimes don’t even know when she is pressing her button.

The marble size bump over Asaph’s site was checked out by one of the nurses, and he is healing very well!  We are so thankful for this gift that he was able to give to Ella Joy.

We are praying tonight, Ella Joy would be able to get good rest.  Please pray she would not have any more continuous bloody noses, but that God would give extra clotting power to the platelets she has.

If it is the Lord’s will, please pray her ANC would come sooner than later.  Thank you for praying through all our specific prayer requests with us!

“My presence will go with you, and I will give you rest.” – Exodus 33:14

*Update*

7/14/17 Friday

Day +11

White blood: 0

Hematocrit: 30.1

Platelet: 22

ANC 0

Ella Joy had another challenging night.  She needed to press the pain PCA button, and she did a great job, but after she took a bath, she had a bloody nose that just would not stop.  Then, her other nostril started to bleed, so there was blood gushing out of both nostrils nonstop.  It literally bled for 2 hours straight.  We ordered platelets for her and even gave her squirts of afrin in both nostrils.  There was blood everywhere on her comforter, and the whole garbage can was filled with bloody tissues.  We literally went through packs of tissue boxes.  She got her bed changed with new sheets but they were soon bloody again.  Right now, we are waiting for the platelets to help stop the bleeding.  She kept crying as the blood kept gushing out, and she was so tired and wanted to sleep, but because the blood just would not stop gushing out, she couldn’t sleep.  Please pray with us that God would help her to stop bleeding.  If it doesn’t stop even with the platelet transfusion, she needs to be seen by a specialist.

She got a dose of mtx chemo today, and we were expecting her mucositis to be more painful, but praise the Lord, she did not have as much pain as I had thought she would!  However, this bloody nose was very hard on her.

We discovered Ella Joy has blood in her urine.  When it was tested, there were red blood cells found.  Please pray that she would not have any serious infection.

Ella Joy’s tacrolimus level went too low again, so when we add her voriconizole back to her meds, it will hopefully raise her tacrolimus back to a therapeutic level.  Please pray that tomorrow God would continue protecting her body and that she would have a much better night without any complications.  Thank you to our armies of praying warriors!  We truly covet your prayers!

“God is our refuge and strength, an ever-present help in trouble. …” – Psalm 46 :1-3

7/13/17 Thursday (original post)

Day +10

White blood: 0

Hematocrit: 30.2

Platelet: 36

ANC 0

Last night was the hardest one yet.  After emesis 2X and having fever, Ella Joy’s throat started hurting closer to midnight.  She got a dose of dilaudid, but she was crying hours later that her throat was in so much pain, that we decided to give her oxycodone.  She started getting nauseous at this time too, and she ended up throwing up her feeds, all of the oxycodone, and she had a bloody nose all at the same time.  Her emesis bag literally had all of it in there.  Since she now did not have the oxy in her system, we gave her a dose of dilaudid.  She got blood all over her comforter, but I am so thankful that we have a washer on the same floor.

It is 5:30am in the morning at this very moment, and as I am waiting for the comforter to wash, I am reminded of the verse: “Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.” – 1 Thessalonians 5:16-18.  It was a tough night.  Neither Ella Joy or myself got any rest because she was either in pain or throwing up all night.  However, instead of feeling sorry for Ella Joy or myself, or wishing that we could get a night’s rest without having to get up every 5 minutes … I need to have a 1 Thessalonians 5 attitude of gratitude.

By the time we got to rounds in the morning, Ella Joy had needed 5 doses of dilaudid because her throat was hurting, and her side was in pain, and she was up all night because she could not fall asleep.  We invited the pain management anesthesiologist to come to rounds with us.  She told me that Ella Joy did not need much pain medicine.  I told her it was morning and she already needed 5 doses!  She asked the attending and my nurse what they thought, and they told her that with another dose of mtx tomorrow, her mucositis would only get worse.  She told me she would have to assess Ella Joy, and basically, she went in and told her that no one, mom or nurse could push or tell her to push the PCA (patient-controlled analgesia) button.  Up to this point, because we wanted to be very conservative with using narcotics, we only asked for pain meds when Ella Joy told us she was in pain instead of giving scheduled pain meds.  Ella Joy always tells the nurses when she wants her feeds on, and when she needs meds, so I knew it would not be a problem.  The first time Ella Joy needed the button, her throat was hurting, so she pressed it.  At first, there was no pain relief, but it slowly helped.  The second time, her throat was in pain, she pressed the button, and it wasn’t even working, it was occluded!

The BMT team have been warning me that from this point on, it only gets worse before it gets better … closer to when she engrafts.

Thank you for following our journey, praying with us, and loving on Ella Joy!  For our faithful prayer warriors, I will do my best to continue updating this post.

An interesting thing I learned is that eagles are born with big heavy wings but they have to learn how to fly without flapping them.  They wait for wind thermals (big gusts of wind that rise up from the atmosphere) to come up on them.

We are asking God to continue using your prayers as wind thermals for Ella Joy as she goes into day +11.  May she renew her strength as she soars on wings like eagles with every prayer lifted up for her.  In her weariness and faintness, may she run to the Lord.

“but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” – Isaiah 40:31

IMG_6314.JPG

 

Transplanting Spiritual DNA

***********Latest Update***********

7/12/17

Day +9

White blood: 0

Hematocrit: 25

Platelet: 10

ANC 0

Today was another challenging one.  Early in the morning, Ella Joy threw up feeds again and she also needed hydromorphone for throat pains.  Soon after, she got her 3rd fever.  Later this morning, her throat hurt again, so she needed more dilaudid.  Then, closer to the afternoon, her right side started hurting.  She could not move it, or even write with her right hand.  Tonight, she threw up her feeds again (emesis) and had her 4th fever.

Please pray for Ella Joy.  It was one thing after another today.  Even tonight she is crying that her right side is in so much pain.  The BMT team do not know what is causing her fevers.

This morning she also needed to get platelet and red blood transfusions.

The other day I found out that her tacrolimus level is for once at a therapeutic level of 5.8.  This is great for now, but knowing that the levels can change frequently, we will continue pulling levels.

Last night and again this afternoon, Ella Joy needed lasix because she was retaining too much fluid.  However, it was tricky because she was also dehydrated.  So, she did not get a bolus, but rather a small increase of fluids over the last couple of days, and then after she got her platelet and red blood transfusions, she got another dose of lasix.  She has needed several doses of lasix because there was so many times even when she was getting the cytoxin that she was retaining too many fluids.

In this difficult time, may He be her ultimate refuge and strength.  As we pray together for Ella Joy, may this hospital room be a dwelling place of the Most High.

“God is within her, she will not fall; God will help her at break of day.” – Psalm 46:5

********** Update **********

7/11/17 Tuesday

Day +8

white blood: 0

hematocrit: 28.2

platelet: 20

ANC:0

Last night, even after I posted the update, Ella Joy started crying in her sleep.  She needed to get some mucositis out of her mouth and grabbed a pencil jar and spit in it.  I think she had mistaken it for one of the puke bags, and it made her very upset.  She was not fully awake, but she said her throat hurt so she got a dose of hydromorphone.  Her mucositis is getting worse, and her cough keeps her up at night.

In the middle of the night, the nurse told me that her heart rate was faster and her pulses were stronger.  Her weight was down, and she was losing a lot of fluids because she threw up so much so she needed to get more fluids over night.

Today I had to take a couple of classes at SCCA.  I made sure that the floor manager and charge nurse had CNA’s and child life to watch Ella Joy while I was away.  I took the ½ hour shuttle and while waiting in the class, I wanted to see why the instructor was late.  When I called, they told me the nurse teaching the class was out for the week and class was cancelled.  So I had to tell the entire class that and got back on the shuttle for SCH.  When I got back, I found out that Ella Joy had not only thrown up a large volume of feeds, but she also had a fever of 102!  Please pray with us that she would feel better soon.  She is feeling miserable, and we are praying her body would respond to the medications that she continues to take.

Right now, she feels nauseous and her throat hurts, so we are going to give her hydromorphine and Benadryl.

Today was a tough one for Ella Joy.  Please pray with me that tomorrow will be a new day… a better day!  These 2 fevers she has had so far are indicators that her body is fighting something foreign, but she simply does not have the cells to attack it.  Please pray for strength and that God would help her body to fight and heal even when her ANC and white blood cells are at 0.

Tonight, as we get ready for bed, please lift up prayers that would rise up like incense.  May it be our evening sacrifice to the Lord as we lift our hands and Ella Joy in surrender to our Healer God!

“May my prayer be set before you like incense; may the lifting up of my hands be like the evening sacrifice.” – Psalm 141:2

********** Update *********

7/10/17

Day +7

White blood: 0

Hematocrit: 29.9

Platelet: 30

ANC 0

The MTX chemo that Ella Joy got the other day caused Ella Joy’s mucositis to get worse.  She was crying that her throat was hurting at 3am in the morning.  We got her a dose of hydromorphone.  When her mouth was checked, there were sores and scalloping inside her cheeks.  Ella Joy continues to have a mucositis induced cough.  Everything tastes bad to her, even water!  From what I understand, the pain in the throat is comparable to swallowing glass.  In her sleep, she seemed to be having a nightmare and was crying, “I don’t want to, I don’t want to!”  I am physically by her side every time she vomits and cries because of throat pains, tummy pains, and headaches, but I cannot imagine the pain she is going through.  Mike and I wish we could take the pain for her so she didn’t have to suffer.

It is many times a struggle to get Ella Joy out of bed.  Most days the only time she gets out of the room is when PT comes to do activities with her.  She also many times does not want to take baths.  I had to bribe her tonight with ipad time.  In the midst of tears, we negotiated.  I said 15 minutes, she said one hour.  We settled for ½ an hour.  She ended up throwing up in the bathroom right before the bath, but at least we got her clean for the night.

Today, Ella Joy threw up twice, and both were large volumes of tube feeds.  Once in the afternoon, and the other time at night.  She is already on 3 different scheduled anti-nausea meds including the scope patch, kytril, and promethazine.  I am documenting every time she throws up as well as the times she needs hydromorphone.  The only reason I am hesitant to add another anti-nausea med is because a lot of times they make her very sleepy, and I want her to be awake for the daytime.  Please pray that God would give wisdom to us as well as to the BMT team.

“Be joyful in hope, patient in affliction, faithful in prayer.” – Romans 12:12

********* Update *********

7/9/17

Day +6

White blood: 0

Hematocrit: 23.2

Platelet: 70

ANC 0

Last night, Ella Joy threw up tube feeds, and again in the morning.  She has visible sores in her mouth from mucositis, and she got another dose of methotrexate chemotherapy which makes the mucositis even worse.  Please pray that her mucositis would not get worse as the team anticipates it will.  Please pray that God would help protect her body against any other negative side effects.

Her tacrolimus level this time was 4.3 which is too low.  17.6 was her last one which was way too high, please continue praying we would be able to soon come to a therapeutic level.  There were 4 times through the day Ella Joy was extremely nauseous, and 2 times she threw up her tube feeds.

Ella Joy has been coughing.  After her last fever, the cultures were negative for bacteria.  We are praying the cough is only a mucositis cough and nothing more serious.  She is now getting mouth rinses every 2 hours and has learned how to use the suction tool by her bedside.

Let’s keep approaching the throne of grace Saints of God!

Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.” – Hebrews 4:16

******** Update ********

July 8 Saturday

Day +5

White Blood: 0

Hematocrit: 26.1

Platelet: 10

ANC: 0

Ella Joy had to get a platelet transfusion today.  She also got dilaudid (hydromorphone) for her throat pains as well as for her pains on her bottom all caused by mucositis.  Giving her the full dose of benadryl really helped with her morning nausea but made her sleep a little longer through the morning.  Today was probably one of the best in terms of nausea.  She definitely had moments that she felt nauseous, but she ended up only spitting up.  Today Ella Joy did get a fever.  It was her first since her BMT.  She got cultures and tylenol, and her fever went down.  Praise the Lord!  Tonight, Ella Joy will be getting a red blood transfusion.  After talking to a friend whose daughter also had a BMT, I realize that even though they may seem well in the beginning, many times, the kids who get the maximum cranial and TBI radiation have side effects that are worse down the line.  Please pray that God would continue to protect Ella Joy’s body as we move into day +6

“I have heard your prayer and seen your tears; I will heal you.” – 2 Kings 20:5

******* Update *******

7/7/17 Friday

Day +4

White Blood: 0

Hematocrit: 28.8

Platlet: 23

ANC:0

Ella Joy continued to throw up last night and this morning.  She told me her throat hurt, she had a headache, and she was extremely nauseous.  It took a ½ hour to get her oxycodone and a ½ dose of benadryl.  During rounds the attending and resident were amazed at how well Ella Joy was doing at this point post-transplant.  They marveled at how she was still tolerating a liter of her tube feeds.  They told me in their BMT history they have never seen a patient do as well as Ella Joy on day +3 & +4.  I told them so many people are praying for her and they told me it was working!

After talking one on one with the pharmacist, I realize that instead of waiting a ½ an hour for as needed oxycodone, a possible good option if she needs it down the line would be PCA morphine.  To be honest, when my dad was terminally ill with liver cancer, he took morphine before he passed away, and I associated it with death, but after talking with the pharmacist, I realize it is a more natural and good candidate to help ease her mucositis pains.  For now, we will try hydromorphone when she has mucositis throat pains.

Ella Joy needs more frequent EKG’s because the voriconizole and kytril she is taking prolongs her QT intervals.  She got an EKG the other day, and she will get another on Monday.

Another prayer request is that her tacrolimus levels were higher (closer to 17) even when they lowered the drip dosage.  Please pray we can come down to a good therapeutic level after the next level testing.

PLEASE CONTINUE PRAYING!  Ella Joy is a warrior fighter, but we know the true reason she is doing so well that the BMT team are so surprised …

Back on July 3rd (transplant day), I had asked all you prayer warriors to pray:

Please pray Ella Joy would surprise them by doing so well, and when they ask, we will tell them we have armies of prayer warriors by Ella Joy’s side and the very greatest Physician himself who will supply Ella Joy’s every need according to his riches in glory in Christ Jesus. (Phil 4:19-20).

Well, I know for a fact that so many of you have read my blog and prayed specifically for that, and God has answered your prayers!

“Not to us, LORD, not to us but to your name be the glory, because of your love and faithfulness.” – Psalm 115:1

****** Update ******

7/6/17 Thursday

Day +3

white blood: 0

hematocrit: 29.8

Platelet: 49

ANC: 0

Ella Joy continues to struggle with nausea, and she has been vomiting large volumes of her tube feeds.  The BMT team suggested turning her feeds down from 75 to 50.  We tried it for today.  Asaph has been struggling to go to school.  He ended up not going today.  I told him he could go to school and have a movie and pizza day at Hutch, or he could come to the hospital and do home school with me.  He chose the later.  We know he misses home so very much, but we are praying for him to understand that although it is tough, this is where we need to be for the next 100 days.

Please pray for Ella Joy to be motivated to get out of bed.  When PT came today, she was reluctant to go to the gym to do some active games.  Ella Joy is not allowed anywhere outside our floor unit post transplant, and so being able to go to the gym is a huge deal!

The tacrolimus level was too high (over 12) and should be between 5-10, so we are going to lower the level in hopes of getting to a therapeutic level.

Just wanted to end with a picture taken before transplant.  Ella Joy was thrilled when her art therapist asked if she could frame a piece of her artwork down the hallway of floor 7 of SCH!

IMG_6248.JPG We appreciate your relentless prayers as we move on to day +4!

“Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise.” – Jeremiah 17:14

*****Update*****

7-5-17 Wednesday

Day +2

white blood: 0

hematocrit: 31.4

platelet: 73

ANC: 0

Ella Joy continues to be nauseous, and she threw up about three times today.  Ever since she got the scope patch, after she threw up, she would not want anti-nausea meds.  Whenever it comes to getting meds and lowering tube feeds, I always ask the nurses to ask her what she wants.  At this point, she doesn’t get much say or decision making power… she always surprises me when she keeps her tube feeds on and declines meds.  Thank you for your prayers for Ella Joy.  As we wait these 2-3 weeks for engraftment, we are extremely thankful for your dedication in lifting Ella Joy up to the Lord in prayer.

“…God has surely listened and has heard my prayer.” – Psalm 66:19

7-4-17 **** Update ****

Day +1 Tuesday (The fourth of July!)

white blood: 0.2

hematocrit: 31.1

platelet: 94

ANC: 160

We had scheduled promethazine as an anti nausea med that Ella Joy would take every 6 hours.  Last night, it was sent late 40 minutes.  This morning at 2am, it was late again and Ella Joy was nauseous and throwing up.  Needless to say, we had a talk with pharmacy and our provider.  After Ella Joy’s TBI treatments, she would look forward to a bath, but many times, even after signing up for a time slot, the bathroom would either be dirty or occupied by someone who did not sign up.  This happened several times, and today, Ella Joy had a 1/2 hour to be unhooked and take a bath.  She was not particularly wanting to take a bath tonight, but we reminded her how she needs to stay clean so her double lumen Hickman line can continue to be clean.  We finally convinced her and walked to the bathroom only to find it was dirty again.  Please pray that the pharmacy and the BMT team can work together to get Ella Joy’s meds to her on time to prevent nausea.  Please also pray that the nurses and CNAs can communicate and be able to work out a schedule where Ella Joy can sign up for a bath and not be unhooked until they know there is a clean bathroom.

Please pray for Ella Joy to be as active as possible.  These days she hardly gets up from her bed.  I want to encourage her to take walks around the unit, but she always complains that she is tired and nauseous.  Please pray that she would be motivated to be as active as possible … one day at a time.  As much as possible, PT/OT try to visit and play games with Ella Joy.

Besides the late meds and no opportunity to take a bath today, Day +1 went well again, praise the Lord!  We are having Ella Joy swish her mouth with sodium chloride at least 5X a day as a way to help with mucositis.

Asaph is also hanging in there in recovery.  He was immediately active and his normal self shortly after his bone marrow harvest.  This morning he was in pain, so he got a dose of Tylenol.  Later today, he was playing in Ella Joy’s hospital room, and then out of no where he says, “Ouch, my butt hurts,” and then continues playing.

Thank you for your continual prayers for Asaph and Ella Joy!

“Because he bends down to listen, I will pray as long as I have breath!” – Psalm 116:2

7-3-17 ***Update***

We are so thankful for all your faithful and encouraging prayers for both Asaph and Ella Joy on this transplant day 0!  Asaph did an amazing job!  Although he did cry while getting the gas mask for anesthesia, Mike told me that the first thing he said when he woke up is that he wanted to see Ella Joy!  When the resident came straight from Asaph’s bone marrow harvest to my floor to talk to me during rounds, he told me that Asaph did well, and they collected a nice amount of bone marrow, and they did their best not to mess up his hair!

God truly heard your prayers not only for Asaph, but also for Ella Joy!  Besides feeling nauseous and throwing up around the time of the beginning of her transplant … she felt better for the rest of the day.  The combination of the scopolamine patch, IV kytril, and promethazine seems to help Ella Joy with her nausea.  She also had a stomach ache, so she needed a dose of oxycodone.

The transplant looked very much like a blood transfusion.  About a week ago, Ella Joy asked me if after the transplant if she would still be the same person and have the same mind.  I told her it was very similar to when she gets blood transfusions.  It is someone else’s blood, but after she gets it, she is still Ella Joy.

Day 0 went remarkably well, praise the Lord!  The BMT team are checking everyday for mucositis which is the painful inflammation and ulceration of the mucous membranes lining the digestive tract. Since it is an adverse effect of Ella Joy’s conditioning (cranial boost, TBI, and high dose chemo), we are so thankful she does not yet show signs of it.  However, the attending told me that because she had the maximum amount of radiation and chemo, she would most likely get worse mucositis and nausea.  Please pray this would not be the case! 

Ella Joy is getting more meds now that she has had her transplant which include: acyclovir, cettnzidime, microfungin, ursodiol, calcium carbonate, tacrolimus, and TPN nutrition.  She will also get methotrexate chemotherapy on day +1, +3, +6 and +11.   Please pray that her body will respond well to all these meds and that she would come to a therapeutic level with tacrolimus as it is a very tricky drug that she will be on for some time.

We are so thankful to God that day 0 transplant went well.  We know we still have a very long road ahead and so we ask that you continue praying with us as we take it one day at a time to day 100.  Thank you so much for your love, encouragement, support and prayers.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”

– Isaiah 41:10

 

7-3-17 **Update**

 

It is 10:45am, and the transplant has started and will take 4 hours and 15 minutes to complete. It should be done around 3pm!

7/3/17 *update*

Asaph’s blood is now here!  It is Seattle time 10:20am, and the transplant will start in about 20 minutes!  Please continue lifting those prayers rising like incense to our Lord!

“May my prayer be set before you like incense” – Psalm 141:2

7-3-17 (original post)

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Today is the big day!

At 8:30am Seattle time, Asaph will be put under anesthesia and harvesting his bone marrow! He will be giving his big sister Ella Joy the best gift ever! We praise the Lord that they have the exact type of blood, and the blood can be processed within the hospital from one floor to the next! Please pray for Asaph to continue to be brave. He knows he will be poked in the pelvis and he is ready! He understands this will help Ella Joy in her fight for her life! Although he has never once complained, this has all been very tough for Asaph to move so suddenly and to live in a small room for so many months. He misses his friends from back home dearly, and being able to live in a house and play with his toys. Please pray that the bone marrow harvest would go smoothly, and that it would be more than enough for Ella Joy. Please pray God would breath life into each individual cell and that Asaph’s stem cells would engraft perfectly and find their way to Ella Joy’s bone marrow.

The conditioning has been tough for Ella Joy, and she struggled so much with nausea, headaches, and tummy aches. Please pray that God would protect her entire body from head to toe.

Please pray for a successful transplant, as well as for seeds of healing. It takes time for Asaph’s cells to engraft into Ella Joy’s bone marrow. In the process, Ella Joy will have absolutely no immune system what so ever. Please pray that He would protect her from germs as we isolate her. There are a lot of side effects from the conditioning (chemo and radiation) that the transplant that the BMT team are expecting. Please pray Ella Joy would surprise them by doing so well, and when they ask, we will tell them we have armies of prayer warriors by Ella Joy’s side and the very greatest Physician himself who will supply Ella Joy’s every need according to his riches in glory in Christ Jesus. (Phil 4:19-20).

At this point, Ella Joy’s bone marrow is wiped out. Please pray that in addition to transplanting Asaph’s cells, that He would transplant spiritual DNA into Ella Joy’s body. May he continue blessing her so that she would grow to be a young woman in Christ who can share an incredible testimony of His faithfulness beyond measure.

Asaph is going to be giving his cells very soon. As his body will regenerate new cells, please pray for God to transplant spiritual DNA into his blood. May he always remember this opportunity God has given him to contribute to this gift of life.

Right now, Ella Joy is crying because she is nauseous and has been crying and throwing up, and her stomach hurts. Please continue praying for her!

It appears if Asaph’s bone marrow harvest is at 8:30am, then Ella Joy’s transplant can be anywhere from 11-1pm. Possibly noon … I will update once I know for sure.

Thank you prayer warriors! I will be updating on this very same post … please continue checking back and praying!

“Behold, I am the Lord, the God of all flesh; is there anything too difficult for Me?” – Jeremiah 32:27

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TBI and TBP (total body prayers)

6/29/17 **Latest Update**

Today was Ella Joy’s last set of TBI!  The entire 11 cranial and TBI treatments were extremely challenging on Ella Joy with extreme nausea, headaches, and stomach aches.  Even our radiologist told us he was so surprised she was so sick even after the first cranial boost.  Seeing Ella Joy crying and throwing up almost every time we rode back and forth in the ambulance was also very difficult for me, that there were a few times I had Mike go with Ella Joy and I stayed behind.  On top of being nauseous for her cranial and TBI, the accumulative effects of radiation are now taking toll as she will be getting cyclophosphomide for 2 days 6/30-7/1.  Please pray that we would have wisdom to know exactly what to give Ella Joy to effectively alleviate nausea and headache and stomach pains.  For TBI, we gave ativan for her nausea and anxiety.  Now that she does not need to be transported by ambulance anymore, I do not want to use ativan anymore.  Ella Joy acts crazy and even a bit aggressive while on this drug.  In addition to the zofran, ativan, benedryl, and ben reg, I talked to the SCCA pharmacist about anti-nausea alternatives.  A couple that we discussed: phenergen and kytril (brother of zofran).  Tonight, Ella Joy was nauseous even after IV zofran, so we gave her a 1/2 dose of phenergen.  It made her sleepy without making her crazy like ativan.  Praying the sleepiness will wear off over time and this will be a good anti nausea med for her as we go into 2 days of extremely high dose chemo.  7/2/17 will be a day of rest (How appropriate Sunday!  Thank you for that Lord!), and then Day 0 transplant day is July 3rd!

Please continue praying for Asaph as he will be going to get his bone marrow harvested on June 3rd.  We will arrive at Seattle Children’s at 7am.  He will be NPO at 4:30am because he will be put under anesthesia.  Please pray that as he gives this gift of his bone marrow to his sister Ella Joy, God would truly bless this transplant.  Since he is smaller than Ella Joy, please pray they would be able to get enough bone marrow for the transplant.  We found out God designed him absolutely perfectly for Ella Joy as they both have the same type of blood!  O+ Praise the Lord!  This means they do not have to manipulate the blood, and that the transplant can take place sooner (afternoon) than later (night).

To our armies of prayer warriors…..we need your prayers!  Thank you for taking this journey with us.  As you are preparing for the 4th of July, the night before would you please lift up a prayer for Asaph and Ella Joy?

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6/26/17 *Update*

We are due to leave for our second TBI, and Ella Joy just started crying. Her stomach is hurting, she has a headache, and she is experiencing extreme nausea. Please lift her up in prayer as we are going into her 2nd TBI which will add even more side effects and intensify the side effects she is now experiencing. We are giving her ativan which can cause many undesirable side effects such as confusion, depressed mood, thoughts of suicide or hurting yourself, hyperactivity, agitation, hostility, hallucinations; or feeling light-headed, fainting, drowsiness, dizziness, tiredness, blurred vision, or sleep problems… Please pray God would help it to be effective as she once again goes into TBI soon…

6/26/17 (original post)

Total Body Irradiation (TBI) treatment suppresses, or lowers Ella Joy’s immune system to help prevent her body from rejecting Asaph’s stem cells.  It is not uncommon for many side effects such as nausea, diarrhea, mouth sores, and swelling of the salivary glands. (This causes pain in front of the ear and in the jaw), and skin changes to occur.  For the cranial boosts, EMTs have been transporting her by ambulance back and forth.  This will continue to be the same for the TBI appointments except they will be twice a day.  Please pray for safety … for Ella Joy’s 2nd cranial boost we were in the ambulance on our way to UW, and someone ran a red light and the ambulance came to an abrupt stop.  The EMT slid all the way down the bench.  Thank God that Ella Joy was secure in the bed, and I had my seatbelt on, but please pray that God would continue to give traveling grace as we go back and forth in ambulance from SCH to UW.

Please pray that God would protect Ella Joy’s body from these side effects, and please pray through these following TBI verses:

To the only wise God be glory forever through Jesus Christ!  Amen. – Romans 16:27

(He is so wise, and worthy of our praise!  Please pray that the oncology radiology team would have tremendous wisdom and that He would lead their every move and decision.)

 Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you. – Deut 31:6

(Please pray for Ella Joy to be strong and courageous.  It is not easy for Ella Joy to stand there for the TBI for the entire treatment, and then to do it again in the afternoon for four days in a row!  Please pray that she would know God is with her through the length.)

In everything give thanks: for this is the will of God in Christ Jesus concerning you.

(We pray that we would be a thankful family.  In the midst of everything, we want to give all praise and glory to our Lord and Savior)

To the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen. – Jude 1:25

Before I formed you in the womb I knew you, before you were born I set you apart…” – Jeremiah 1:5

I will not leave you comfortless: I will come to you.” – John 14:18

So far, Ella Joy finished her first TBI.  So far so good.  Praise the Lord!  We are praying the 2nd one will also go smoothly.  I will continue updating on this post on how her TBI is progressing.

We are incredibly thankful to you for caring for and praying for Ella Joy every step of the way

Thank you for praying for Ella Joy’s remaining 7 TBI treatments and giving her TBP (total body prayers!)

The Deepest Comfort in Every Pain

6-25-17 *** Latest Update ***

Thank you to so many of you who are asking how Ella Joy is doing now that she got her last cranial boost.  The first one was the worst, and then the second and third were much better because she was on fluids and IV zofran.  She needed IVIG today and because of the pre-meds, tylenol and mostly because of benedryl, she was extremely tired and slept for most of the day.  Tomorrow is the day she gets her first TBI.  She will be getting it 2X a day for four days.  Tomorrow 6/26/17, she will be getting her first total body irradiation at 8:30am, and her second at 2:30pm.  These times are also the same from 6/27/17-6/29/17 Tuesday-Thursday.  Please pray Deut. 31:8 prayers that the Lord himself would go before her be with her, and never leave her throughout these 8 total body irradiation sessions.  Please pray that she would not be afraid or discouraged.  Please pray with us that God would help her to tolerate these 8 TBI treatments.  She will then on 6/30/17-7/1/17 for two days get the highest doses of cyclophosphamide that have ever hit her body.

We have a huge prayer request that just happened tonight:

Asaph complained that his stomach was hurting, and he ended up throwing up several times.  We are currently 8 days away from transplant, and it is crucial that both of them are healthy and ready for our big day on July 3rd.  Please pray that Ella Joy would not catch whatever Asaph has and that God would help Asaph to feel better soon, and that this would not interfere with or delay transplant.

Thank you so much!  We truly need your prayers!

“And my God will supply every need of yours according to His riches in glory in Christ Jesus.  To our God and Father be glory forever and ever amen.” – Phil. 4:19-20

6-24-17 ** update **

We are now inpatient.  After throwing up 10X, and still having a headache we waited until 7pm for a room to become available.  After bolus fluids, Ella Joy seemed to feel much better.  Please pray for the upcoming 2 cranial boosts.  Saturday will be at 10:00am, and Sunday at 9:00am.  Please pray that everything would go smoothly, and that post radiation, she would not be as sick as she was this first day.  She was crying in pain that she had such a massive headache, and I have never seen her throw up so much, even when she was getting high dose chemo.  In addition to the cranial boosts, the TBI is known to be even more hard hitting.  2X for the 4 days immediately following her cranial boosts… we need lots of prayers for God’s protection over her entire body from head to toe.  Thank you so much our prayer warriors!

6-23-17 *Update*

This morning we took Ella Joy in to UW for her first cranial boost.  It seemed to go well, but I did notice some skin discoloration on her face and head.  After a few hours, she started to complain about having a headache, and then she started feeling nauseous.  I gave her zofran, but she still threw up in the van.  When we got her back to RMH, I gave her 3ml of oxycodone.  I try not to give this medication to her, and save it for the emergency times.  I always give her the choice whether she wants to take these kinds of pain meds.  which she did, this time.  I also asked her if she felt she needed to be inpatient as soon as tonight, and she said yes.  Right now, they do not have a room for her.  Please pray for Ella Joy to feel better soon.  Please pray that her headache would go away, and that she would be able to tolerate the next 2 cranial boosts and the 8 rounds of TBI in the 4 days after.  This is just the beginning and radiation is rocking her.  We appreciate your prayers!

6-21-17 *Original post*

There were a few changes in Ella Joy’s radiation schedule.

6/22/17 Thursday is the simulation for her cranial boost radiation.  From the picture above, during her work-ups, she got fitted for her radiation mask.

6/23-6/25 Ella Joy will be getting her cranial boost.

Then, from 26-29 Ella Joy will be getting TBI total body irradiation in addition to high dose cyclophosphamide.  This will be the maximum amount of  chemotherapy Ella Joy has ever gotten, and this is in addition to her total body irradiation which she has never gotten before.  Please continue praying through the many short and long terms effects of this conditioning treatment (I listed on the previous post) to wipe out her bone marrow and prepare her for transplant in addition to erradicating any cancer cells that still might be hiding.  Ella Joy will be inpatient from this point on.

7/3 is still Ella Joy’s transplant day!  I am planning on formally posting every now and then but updating everyday day from her transplant birthday July 3, 2017 until day 100.  I know there are so many of you prayer warriors who want to pray and follow through her engraftment and journey through transplant.

Please continue praying, and here are some prayer requests that have been on our heart:

1.) Please pray that we would do our best to keep Ella Joy and Asaph away from germs and viruses from now up to transplant.  After Ella Joy gets her transplant, me (Anne) and Ella Joy will be isolated and will be staying in the hospital room for most likely longer than a month.

2.) Can you please pray that God would provide a double bedroom RMH isolation apartment for our family when Ella Joy is ready to be discharged?  We were on the waiting list to get into a regular RMH room when we first came.  Now, after transplant, there are special isolation apartments that are very difficult to get in.  Timing is key, so please pray that when Ella Joy is ready to be discharged, a double bedroom RMH isolation apartment would be ready for us to move into.

3.)  We are so thankful to Mike’s mother who has sacrificed so much of her recent retirement to help our family.  Please pray for strength for her as she will be caring for Asaph when I am at the hospital with Ella Joy and Mike is at work.  We are so grateful that Hutch School has summer camp that will keep Asaph busy for the summer!

4.) Right now, I am giving Ella Joy 8 medications daily and at night.  After transplant her medications will increase. Depending on how her body responds to the cranial boost, TBI and high dose cyclophosphamide, there are a list of drugs I went over with the transplant pharmacist that is 10 pages long.  There are an endless list of things that can go wrong with BMT, and there are certain drugs that need to be taken, but they might have other side effects and in turn additional drugs need to be taken, and so on…

5.)  Ella Joy’s appetite has not gotten better.  However, any time she wants anything whether it is a lollipop, or fro yo, we are more than happy to give it to her so she doesn’t lose her natural sensation of using her mouth to consume.  We are so thankful that the Nourish feed she has been on has sustained her and helped her to gain a healthy amount of weight.  Please pray that when it is the right time to wean her off her tube feeds, that she would slowly but surely be able to gain an appetite and be hungry to crave and eat healthy foods on her own.

6.)  Please continue praying for wisdom and discernment for Ella Joy’s BMT team.  There are many critical decisions that need to be made as we move forward to radiation, chemo and transplant.  Please pray that there would be effective communication and that every medication, procedure, and decision would be led by the hand of God.

7.)  After talking with some parents of children who have been through BMT, I am realizing that staying hydrated, staying active, and staying away from germs has helped tremendously.  Please pray that I would challenge her to drink water, use hani sani and wash her hands, and take walks around the hospital unit, but that I would know when she needs rest from the effects of high dose chemo and radiation.

It is your prayers, love and support that encourage us and carry our family during the most challenging times.

One day, Ella Joy asked me for a band aid.  She had a cut on her finger.  As I was putting on the band aid, she said “This boo boo is nothing compared to cancer!”

I was reminded of the lyrics to a hymn that Helen Howarth Lemmel wrote:

Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.

“‘From the lips of children and infants you, Lord, have called forth your praise…” – Matthew 21:16

(Fill in the blank) is nothing compared to Calvary.

One of my favorite quotes from John Piper’s Don’t Waste Your Life, “Life is wasted if we do not grasp the glory of the cross, cherish it for the treasure that it is, and cleave to it as the highest price of every pleasure and the deepest comfort in every pain. What was once foolishness to us—a crucified God—must become our wisdom and our power and our only boast in this world.”

Ella Joy’s boo boo was nothing compared to her battles with cancer … and cancer has nothing on our crucifed Lord and Savior.  Please never ever ever ever give up praying for Ella Joy as July 3rd approaches, and Ella Joy will never ever ever ever quit fighting!

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Plans to prosper & not to harm

Chihuly Garden and Glass

6/9/17

Thank you so much to all our friends and family who have been relentlessly praying for Ella Joy and our family.  Wednesday 6/7/17 was our first visit to the Seattle Cancer Care Alliance.  This is where Ella Joy gets majority of her work ups leading up to transplant done.  It is about a half an hour shuttle from SCH.  To be honest, our first visit there was overwhelming and exhausting. Ella Joy and Asaph had their own medical teams, and it was very tiring going from one meeting to another.  Their schedules were constantly changing throughout the day, and many of our meetings started late.  The transplant child life specialist did a wonderful job with Asaph as he needed to get examined, screened, and poked again to give a significant amount of blood for his work-ups.

Thursday 6/8/17, Ella Joy had 4 pulmonary function tests done to check the health of her lungs.  We met the social worker, and then had our first meeting with the attending for transplant.  I had read through all the transplant paperwork and binders, so Mike and I knew what questions to ask.  However, when the attending was discussing the lesions found on Ella Joy’s lower lungs, she told us they were not exactly sure what they were.  There were previously lesions on her lower right side of her lungs, and now they were finding new ones on her lower left lungs.  She had mentioned that Ella Joy had RSV from the nasal swabs.  I told her that Ella Joy had rhino from the swab, and that she had RSV only back in 2013. It was very important to know for sure as something as simple as the common cold could delay transplant if severe enough.  When she checked the records, she realized it was rhino, and Ella Joy only had RSV in 2013.  She apologized, but made another mistake as she was mentioning the graft versus host disease meds that Ella Joy would be receiving, she mentioned Methotrexate and then she said Ella Joy would be getting Cyclosporine.  Being the momcologist that I am, I told her I believe Ella Joy is getting the Tacrolimus.  Once again she apologized, but at the end of the meeting, Mike and I felt like she was ill prepared for the meeting, and wondered if they make these kinds of mistakes at the initial meeting, what kind of mistakes would be made with medications and procedures in the middle of transplant when one wrong dosage or decision can be fatal?

This leads us to a very long prayer request list.  Friends, please pray with us for these very specific and important cries in our hearts to Jesus:

  • Please pray for wisdom and discernment for every member of Ella Joy and Asaph’s transplant team. Pray that everyone would be on the same page, and that lines of communication would stay effective and open.  The transplant attendings change monthly, but please pray that even when there is a new attending, that information would not be lost.
  • The results of Ella Joy’s last CT and PET scan revealed that Ella Joy had lesions on her right lower lungs as well as new ones on her left lower lungs. Although the oncologists are unsure of what these lesions are, please pray that they would go away and not be a source of complication in delaying Ella Joy’s bone marrow transplant.
  • Please pray that God would protect Ella Joy and Asaph as well as Mike, Mike’s mom and myself from catching any viruses or sicknesses. We will slowly be putting Ella Joy and Asaph in isolation even before conditioning and transplant.
  • Ella Joy will be getting 3 days of cranial boost radiation (starting 6/21) in addition to twice a day for 4 days of TBI or total body irradiation. Please pray that as she gets TBI and Cyclophosphamide chemotherapy, that God would protect her from nausea, vomiting, diarrhea, and mouth sores. Cyclophosphamide often can cause bladder irritation and bleeding, and TBI can cause a painful swelling of the parotid gland.
  • Please pray that God would protect Ella Joy from graft versus host disease that often involves the skin, liver or bowels. Please pray that Ella Joy would also be spared from the risk of organ failure, including heart, kidney, lung, brain, and liver.
  • We ask that you pray with us that Ella Joy would not get the side effect of cataracts, secondary cancers, relapse, or any other fatal consequences.
  • There is a line on a paperwork we need to sign that states, “There is a risk that the transplant will not function adequately which would lead to increased infections and even death.” Please pray that this would not be an option for us, and although we must sign on the dotted line, we trust in a God of miracles and a God who brought Ella Joy’s cancer down from 90% to 1.1% to 0% Amen!
  • Please pray that as Ella Joy takes tacrolimus, she would not have a decline in liver or kidney function that would require the use of an artificial kidney machine hemodialysis. Please pray she would not have tremors or back pain, dangerous loss of magnesium levels, or hypertension.
  • In addition, please pray as she takes methotrexate, God would protect her from mucositis, decline in liver function, nausea and vomiting.
  • Please pray for Asaph as he now has a better idea of how he is getting to finally “help” Ella Joy as she fights for her life again. Please pray that God would also protect his body as his bone marrow is harvested, and that he would bounce right back afterwards.
  • There are many more prayer requests, but for now, we do pray that Asaph’s cells would engraft perfectly in Ella Joy’s bone marrow, and that graft versus leukemia would effectively eradicate any cancer cells trying to hide in Ella Joy’s body.
  • Lastly, please pray through these verses (I like to insert Ella Joy’s name) to claim God’s promises through His Word:

Ella Joy who hopes in the LORD will renew her strength. She will soar on wings like eagles; She will run and not grow weary, she will walk and not be faint. – Isaiah 40:31

For I know the plans I have for Ella Joy,” declares the LORD, “plans to prosper her and not to harm her, plans to give Ella Joy hope and a future.” – Jeremiah 29:11

On the day Ella Joy called, you answered her; Her strength of soul you increased.- Psalm 138:3

Please feel free to send me anymore Bible verses with her name inserted.  I always love praying through Bible verses!

Today marks 10 years since Mike and I were married.  We kept forgetting our anniversaries, when Ella Joy and Asaph were younger because we were so busy caring for them, and then when Ella Joy was first diagnosed with stage 4 non-Hodgkins cancer at the age of 4, we were busy caring for her for 2+ years, and now today for our 10th anniversary, we are caring for her as she relapsed and is now preparing for transplant.  I am so very thankful for Mike … we are so different, but also very similar at the same time.  I have never known anyone who was such a Colossians 3:23 diligent worker who at the same time was able to come home and be such a loving husband and father and still be on top of giving Ella Joy her Chlorhexidine wipes and still be on top of her treatment plan.  While I am borderline introvert, Mike is a total extrovert and can always manage to small talk or crack jokes to the grocery cashier or nurse at the hospital.  Ella Joy is just like Mike in every way possible … she is super competitive, can be a little spicy, she has thick strong legs, she is super sharp, extremely friendly, can jam praise songs on the guitar and she truly loves Jesus with all her heart.

(Okay Anne, don’t cry…) Mike, I know this relapse is the absolute hardest thing we have ever been through together.  I truly could not have gone through this without your holding my hand.  It has been a nightmare in every way possible, but God knew I needed you to point me to the Lord to (Psalm 30:11) turn my mourning into dancing again.  We still have a long road ahead, but I am so thankful to the Lord that we can fight it with Ella Joy and Asaph together.  I love you Michael Jongin!

Happy 10th Anniversary!

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We haven’t gone to a concert since Chris Tomlin at U of I, but someone graciously donated 2 tickets to RMH, and we were the thankful recipients!  We got to see the total package: Boyz II Men, Paula Abdul, and NKOTB!

Wrestling in Prayer

5-21-17 updated post

It has been a few days since we started this third round of high dose chemo, and second round of nelarabine, etoposide, and cyclophosphamide.  The side effects are getting worse.  This intense chemotherapy is causing Ella Joy skin discoloration.  It is apparent on her scalp, neck, stomach, wrist, and other places on her body.  Please pray that it would not continue to spread.  Our oncologist said it can sometimes be permanent, so we are praying it could be something that can go away after some time.

We noticed that she continues to talk nonsense while on this chemo.  The last time, she would cry and moan at night, and this time, when she needed to go to the bathroom, she shouted out “Asaph!  and Appa!” I thought she was talking in her sleep, but she needed help going to the bathroom, and didn’t realize to call for me.

This time around she is also more nauseous.  The first time, it was towards the end of the cycle when we were discharged, when instead of giving her zofran after 8 hours, I waited until morning, and she threw up.  This time, it is the middle of her chemo treatment, and she threw up before her next zofran was due.  We try as much a possible to not give her drugs unless absolutely necessary, but after she threw up, we gave her benadryl with reglan.  This drug makes her extremely tired and sleepy, so we are praying she would not be as nauseous so she doesn’t have to take additional drugs.  We want her to be active and walking around the hospital.  Even her physical therapist noticed her legs and ankles were tight, and she needed more stretching, walking, and physical activity.

As we expected, she has absolutely no appetite.  Before, she would take a small little Asian ball ball cookie that melts in her mouth, but after this chemo treatment started, she refused to take even this small cookie.  Please pray that her appetite would come back sooner than later after this chemotherapy treatment is over.  She is still not at her original ideal weight.

Thank you for your faithful prayers for Ella Joy!  God uses your prayers to carry us, to encourage us, and to give us strength during the most challenging times.

“Then you will call on me and come and pray to me, and I will listen to you.

– Jeremiah 29:12

5-18-17 (original post)

In Genesis 32, Jacob wrestles with God.  The part I love best is when Jacob says that he will not let go until he blesses him.  These last few weeks, I could not sleep.  God woke me up in the middle of the night, and I knew it was because I needed to pray.  During that time, I felt like in my praying, I was wrestling with God and I would not stop until He blessed Ella Joy with Zero and Negative MRD.

Just now, we got the phone call from our oncologist.  Praise the Lord, He has answered our prayer of ZERO Cancer and NEGATIVE MRD!  I truly believe this is a miracle from the Lord.  Even our oncologist told us before the BMA that he wouldn’t be surprised to see a percentage of cancer lingering with her t-cell leukemia.  He was hoping for, but not expecting zero and negative mrd!  We want to thank you for praying alongside us with your families and wrestling in prayer for Ella Joy!

Please continue praying as there are still many prayer requests as we get closer to her radiation work up and bone marrow transplant date.

  • Ella Joy will be admitted tomorrow Friday the 18th for the same 2nd cycle of high dose nelarabine, etoposide, and cyclophosphamide. We are extremely thankful that Jeannie will be coming to visit the day before Ella Joy gets admitted, and Mike’s mom is scheduled to come back sometime in the middle of her inpatient stay.  Although I do not believe Ella Joy experienced full blown neuropathy as the oncologists told me often is a side effect, I did notice that she was weaker when using her hands and it was hard for her to do things like unplugging her tube pump, pushing down a larger syringe, and her hands were sweaty and tired when she was coloring.  The last time she went through this chemo cycle, she seemed a little off, cried and moaned almost every night, and sometimes did not make sense when she talked.  Please pray for God to protect her for this 3rd round of high dose chemotherapy.  It was not ideal for her to get this 3rd round, however due to the timing of her work up/radiation/ and transplant date of July 3rd, we had no choice but to give her a 3rd round so the aggressive t-cell cancer does not rear its ugly head and spread again.  Please pray with us that every single cancer cell will be obliterated, annihilated, and demolished forever and ever and ever!
  • The other concern with going through this chemo cycle again is that Ella Joy completely lost her appetite. She had never regained it, and now that we are going back in, I am so afraid that she will never gain an appetite for food.  She had also been extremely nauseous and threw up many times after being discharged.  She even threw up her tubie and had to painfully push it back in while crying.  Please pray that after this cycle, she would eventually regain her appetite for food, and that she would not be as nauseous this time around.  Please pray that the Zofran would work so we do not have to give her additional drugs.
  • Please pray for wisdom for myself and Mike as we make decisions on her behalf for her upcoming transplant. Today, Ella Joy asked me about radiation.  I believe this will be extremely hard on her as she has never experienced radiation before.  She will be getting the maximum allowed to give to patients, including full body and then additional cranial and spinal radiation.  We need to decide if we want her under anesthesia or awake during these radiation procedures which happen sometimes twice a day for weeks.
  • Our tentative transplant date is July 3rd. Please pray that if it is God’s timing and an earlier date opens up, that we can get her radiation and work up done earlier so we can have an earlier transplant date.  Even now, Ella Joy has a runny nose and a little cough.  Please pray with us that it would soon pass and not linger or get worse.  Please pray that God would protect Ella Joy and Asaph from any germs or viruses that would potentially delay the transplant.
  • There are so many things that could go wrong with the transplant, but please pray for God’s sovereign hand to be over the entire transplant team, oncologists, nurses, all the medication needed, and over all of Ella Joy’s organs and cells. We are praying for the cancer to be eradicated for good and to never come back, but we also pray that the medications that we give to Ella Joy would not cause a secondary cancer or more problems down the line.

We cannot thank you all enough for wresting in prayer with us!  It has been just about 2 months since we hastily packed our bags and took the flight to Seattle Children’s ER.  Never to look back at the comfortable every-day life we once knew.  Please pray with us for Ella Joy and Asaph to be in ideal health and ready for June 7th, the first day we arrive at Seattle Cancer Care Alliance to start the preparations and work up for transplant, and it will also be the time Asaph learns he will be Ella Joy’s donor!

I was so extremely thankful for the kind messages so many friends and family gave me for Mother’s Day.  I was also very thankful for a visit from a special friend who also happens to be quite an extraordinary mother.

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We do not lose heart

4-30-17

This second round of high dose nelarabine, etoposide, and cyclophosphamide chemo has been tough on Ella Joy.  I noticed right away she was slower in her thinking and sometimes I had to call her name several times before she would respond to me.  I had asked our oncologist about it, and he said this very well may be a side effect of this chemotherapy treatment.  We are praying it would be short term.  The chemotherapies are given back to back to back for one hour, two hours, and then one hour again.  The other thing I have noticed is that she has  been crying and moaning at night since we started this cycle. The oncologists are expecting neuropathy (hand and feet pains) with this chemo treatment.

Please help us lift up Ella Joy to the Lord in prayer:

1.) Please pray that this intensive chemotherapy would erradicate every single cancer cell in her body.  That the 1.1% would come down to ZERO and NEGATIVE.  When we get the bone marrow aspirate on day 28, (today is day 5), please pray that we would receive the best news ever, that they cannot detect any cancer, even with the flow cytometry, and that we can more forward to transplant!  Tonight we get discharged from the hospital, and then we come back on May 1st for a Neulasta shot she needs to get in her arm to recover ANC counts.  Then, May 2nd is labs at the hospital as well as a meeting with Dr. Cooper our main oncologist.

2.) Please pray for the next steps.  At this point, we are going to have to have a third round of intensive chemotherapy.  The reason is because initially, she had cancer blasts in her spinal fluid and she needs to get the maximum radiation before transplant.  The timing did not work out, so after her 2nd round we are currently on, she would be off chemotherapy for one month before we started her radiation.  That is way too much time for aggressive t-cell cancer to spread again.  So, unless there is a cancellation and we gain an earlier slot, we are going to have to go through another round of intensive chemo.  Please pray that it would be the Lord’s will and His sovereign hand that leads everything from the timing of radiation to the transplant, and that He would give the oncologists and the transplant team much wisdom and discernment to know how to best go forward from this point until transplant.

3.) Mike’s mom will be going back to New York for a period of time.  Please pray that we would know exactly what to do with Asaph,  He is not allowed to sleep over at the hospital.  The earliest he is allowed to come is at 8am.  Mike goes to work at 4-5am and it will be tricky getting Asaph to school on time.  Please pray that God would provide for us so that we can get Asaph to school and that Mike would be able to get to work without any complications during Ella Joy’s inpatient stays.  (Ella Joy may have to be inpatient if she gets a fever or if there are complications when her ANC is at zero).

4.) This second high dose of chemo has been tough on Ella Joy, and she has not eaten anything since it started.  Thank the Lord for the Nourish feed she has been on!  I believe it helps to maintain her weight, but please pray her appetite would come back so she can start eating again and start gaining weight,  She has not yet come back to her original weight.

5.) Most of Ella Joy’s hair has fallen out, and she has been telling me how much she just wants to go home and get out of the hospital.  She often talks about how she misses her friends from home, and how she wants to do some of the things we used to do at home.  Please pray Ella Joy would not be discouraged, but that she would continue to fight.  Please pray God would protect all her organs and good cells, and that every single cancerous cell would be destroyed for good.  Please especially pray for those cancerous cells that are trying to hide in her bone marrow and spinal fluid and anywhere else in her body.

6.) Please pray that Ella Joy and Asaph would be healthy especially as the day of transplant approaches (sometime in the beginning of June we would start preparing Ella Joy as well as Asaph).  Please pray that God would protect them from germs and anything that would delay the transplant.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” – 2 Corinthians 4:16-19
Thank you Saints of God, your prayers mean everything to us!

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