6/29/17 **Latest Update**
Today was Ella Joy’s last set of TBI! The entire 11 cranial and TBI treatments were extremely challenging on Ella Joy with extreme nausea, headaches, and stomach aches. Even our radiologist told us he was so surprised she was so sick even after the first cranial boost. Seeing Ella Joy crying and throwing up almost every time we rode back and forth in the ambulance was also very difficult for me, that there were a few times I had Mike go with Ella Joy and I stayed behind. On top of being nauseous for her cranial and TBI, the accumulative effects of radiation are now taking toll as she will be getting cyclophosphomide for 2 days 6/30-7/1. Please pray that we would have wisdom to know exactly what to give Ella Joy to effectively alleviate nausea and headache and stomach pains. For TBI, we gave ativan for her nausea and anxiety. Now that she does not need to be transported by ambulance anymore, I do not want to use ativan anymore. Ella Joy acts crazy and even a bit aggressive while on this drug. In addition to the zofran, ativan, benedryl, and ben reg, I talked to the SCCA pharmacist about anti-nausea alternatives. A couple that we discussed: phenergen and kytril (brother of zofran). Tonight, Ella Joy was nauseous even after IV zofran, so we gave her a 1/2 dose of phenergen. It made her sleepy without making her crazy like ativan. Praying the sleepiness will wear off over time and this will be a good anti nausea med for her as we go into 2 days of extremely high dose chemo. 7/2/17 will be a day of rest (How appropriate Sunday! Thank you for that Lord!), and then Day 0 transplant day is July 3rd!
Please continue praying for Asaph as he will be going to get his bone marrow harvested on June 3rd. We will arrive at Seattle Children’s at 7am. He will be NPO at 4:30am because he will be put under anesthesia. Please pray that as he gives this gift of his bone marrow to his sister Ella Joy, God would truly bless this transplant. Since he is smaller than Ella Joy, please pray they would be able to get enough bone marrow for the transplant. We found out God designed him absolutely perfectly for Ella Joy as they both have the same type of blood! O+ Praise the Lord! This means they do not have to manipulate the blood, and that the transplant can take place sooner (afternoon) than later (night).
To our armies of prayer warriors…..we need your prayers! Thank you for taking this journey with us. As you are preparing for the 4th of July, the night before would you please lift up a prayer for Asaph and Ella Joy?
We are due to leave for our second TBI, and Ella Joy just started crying. Her stomach is hurting, she has a headache, and she is experiencing extreme nausea. Please lift her up in prayer as we are going into her 2nd TBI which will add even more side effects and intensify the side effects she is now experiencing. We are giving her ativan which can cause many undesirable side effects such as confusion, depressed mood, thoughts of suicide or hurting yourself, hyperactivity, agitation, hostility, hallucinations; or feeling light-headed, fainting, drowsiness, dizziness, tiredness, blurred vision, or sleep problems… Please pray God would help it to be effective as she once again goes into TBI soon…
6/26/17 (original post)
Total Body Irradiation (TBI) treatment suppresses, or lowers Ella Joy’s immune system to help prevent her body from rejecting Asaph’s stem cells. It is not uncommon for many side effects such as nausea, diarrhea, mouth sores, and swelling of the salivary glands. (This causes pain in front of the ear and in the jaw), and skin changes to occur. For the cranial boosts, EMTs have been transporting her by ambulance back and forth. This will continue to be the same for the TBI appointments except they will be twice a day. Please pray for safety … for Ella Joy’s 2nd cranial boost we were in the ambulance on our way to UW, and someone ran a red light and the ambulance came to an abrupt stop. The EMT slid all the way down the bench. Thank God that Ella Joy was secure in the bed, and I had my seatbelt on, but please pray that God would continue to give traveling grace as we go back and forth in ambulance from SCH to UW.
Please pray that God would protect Ella Joy’s body from these side effects, and please pray through these following TBI verses:
To the only wise God be glory forever through Jesus Christ! Amen. – Romans 16:27
(He is so wise, and worthy of our praise! Please pray that the oncology radiology team would have tremendous wisdom and that He would lead their every move and decision.)
Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you. – Deut 31:6
(Please pray for Ella Joy to be strong and courageous. It is not easy for Ella Joy to stand there for the TBI for the entire treatment, and then to do it again in the afternoon for four days in a row! Please pray that she would know God is with her through the length.)
In everything give thanks: for this is the will of God in Christ Jesus concerning you.
(We pray that we would be a thankful family. In the midst of everything, we want to give all praise and glory to our Lord and Savior)
To the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen. – Jude 1:25
Before I formed you in the womb I knew you, before you were born I set you apart…” – Jeremiah 1:5
“I will not leave you comfortless: I will come to you.” – John 14:18
So far, Ella Joy finished her first TBI. So far so good. Praise the Lord! We are praying the 2nd one will also go smoothly. I will continue updating on this post on how her TBI is progressing.
We are incredibly thankful to you for caring for and praying for Ella Joy every step of the way
Thank you for praying for Ella Joy’s remaining 7 TBI treatments and giving her TBP (total body prayers!)