7/23/17 Sun. Day +20
White blood: 1.9
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.
7/22/17 Sat. Day +19
White blood: 1.8
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
7/21/17 Thurs. Day +18
White blood: 1.4
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
7/20/17 Thurs. Day +17
White blood: 1.1
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
7/19/17 Wed. Day +16
White blood: 1.1
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
Day +15 Tuesday
White blood: 0.7
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
Day +14 Monday
White blood: 0.4 -> Praise Jesus
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
White blood: 0
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
White blood: 0
Platelet: 61 (after transfusion)
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
White blood: 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)
White blood: 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