White blood: 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 **********
white blood: 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 *********
White blood: 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 *********
White blood: 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
White Blood: 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 *******
White Blood: 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 ******
white blood: 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!
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
white blood: 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
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
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
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)
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