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

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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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