TBI and TBP (total body prayers)

6/29/17 **Latest Update**

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

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

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

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6/26/17 *Update*

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

6/26/17 (original post)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The Deepest Comfort in Every Pain

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

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

We have a huge prayer request that just happened tonight:

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

Thank you so much!  We truly need your prayers!

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

6-24-17 ** update **

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

6-23-17 *Update*

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

6-21-17 *Original post*

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Plans to prosper & not to harm

Chihuly Garden and Glass

6/9/17

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

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

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

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

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

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

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

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

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

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

Happy 10th Anniversary!

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