Sunday, August 13, 2017

Devastating News

On March 31, 2017 I sat stunned in Dr. Richard Helmer's office at Texas Oncology and heard terrible news about mom. It's exactly like they depict in the movies, where you feel like you are having an out of body experience. I didn't cry, I didn't react, I didn't do anything except sit there looking at my beautiful, healthy mom trying to comprehend it all. I will piece together emails so I can get the story correct. Here is the first e-mail that I sent that day:

March 31, 2017
Friends:
We got some difficult and sad news today at the oncologist’s office.

My mom has a bone marrow malignancy (cancer) called Myelodysplasia. It is part of a collection of bone marrow disorders and unfortunately, her type is very severe.

Her options are limited and include palliative chemotherapy or bone marrow transplantation (if a donor match is found and if she fits the qualifications for it).

The life expectancy numbers are grim (1 to 3.5 years) and the news was pretty devastating. I am trying to take it all in and digest everything. It has been hard.

I am asking for specific prayers:
*that my mom would be found to have a specific gene mutation that makes oral chemotherapy an option
*the family would be in agreement about treatment decisions and how to move forward
*wisdom for the doctors
*God’s glory and our faith would deepen through all of this
*healing for my mom

We plan to meet with other doctors to hear about treatment options and to get second opinions. I will keep everyone posted as I know more.

-Christy

April 12, 2017
Friends:
Today was a whirlwind. MD Anderson is an amazing and overwhelming place. The most unsettling part is that many patients there looked so. . . sick. There were a lot of people in wheelchairs, without hair, wearing masks - it just is such a different picture of how my mom looks - beautiful, healthy, vibrant. We were able to get done what we needed to do in ONE DAY and are back in Austin!

We met with the oncologist (Dr. Borthakur) today. We liked him - he is decisive and gave us a plan to move forward.

We did not really get into the severity of her disease - I think everyone in the room knows it is quite severe and there isn’t any time to waste. 

She had a repeat bone marrow biopsy performed there and depending on those repeat results, she will be placed on a chemotherapy regimen that includes standard treatment (dacogen/Vidaza) and another study medication. She will be returning to MD Anderson on Thursday, April 20th to have a PICC line placed for easier IV access and any other last minute labwork that is needed. On Friday, April 21st she will be admitted to the hospital for her first round of chemotherapy. The first 5 days my dad (or me!) will be allowed to spend the night in her hospital room with her. Then starting on day #6 she will be in complete isolation in a sterile hospital environment because her blood counts will drop and she will be at great risk for infection and bleeding. We will only be able to communicate to her through a plastic or glass wall that will protect her from the outside world. We won’t be able to touch her or hug her. She will need to be in the hospital for 2-3 weeks longer while they watch her recovery and see how she responds.

If all goes well, she will possibly be able to continue receiving the chemo every month for 5 days as an outpatient. But not sure at this point if that will need to be done in Houston or not.

In the meantime, while she is in the hospital at MD Anderson. the bone marrow transplant team will also be meeting with her to discuss the possibility of a transplant and possibly begin this 3-4 month process.

We were stunned when Dr. Borthakur told us the timing. Nothing about this disease and treatment have been predictable. I grieve the loss of her freedom for these next few weeks and pray that the Lord will give her peace.

Here are my specific prayer requests:
*healing for my mom and protection from infection
*continued clarity about treatment
*perseverance, patience and kindness for my Dad as he is stretched beyond his comfort zone
*God’s glory would percolate into every encounter and situation related to this terrible situation

Love to all,
Christy

April 21, 2017
Girls:
Today was another whirlwind day. MD Anderson never disappoints in its ability to totally change the plan on us.

We had prepped ourselves for 2-3 weeks of inpatient hospitalization, with the latter part of the stay with mom in isolation and were STUNNED with Dr. Borthakur said the study Mom qualified for was able to be done as an OUTPATIENT. Praise the Lord! This instantly lifted my mom’s spirits and has given my mom and dad so much more freedom.

Here is what we can expect over the next 2 weeks:
* My mom has been placed on an experimental medication (SGI-110) and protocol that will be administered subcutaneously for 5 days every 28 days.
* For this first round of chemo, she will need to stay near MD Anderson (Mom and Dad have chosen the Rotary House) for 2 weeks
* Days 10-15 of the treatment are always the most dangerous because this is when blood counts drop to potentially near zero. Transfusions of blood or platelets may be needed. This will still not require hospitalization and can be done as an outpatient
* Mom will be returning to MD Anderson every 28 days for 5 days of treatment with the hope that she will not have to stay on for monitoring like she has this round. 
* She will need ongoing blood testing both at MD Anderson for the next 2 weeks and while she is in Austin twice a week

The goals of the treatment for for “Clinical Remission”. This is the best case scenario - not a cure, but laboratory remission. She will start the evaluation for bone marrow transplantation as well - this provides a cure but has many risks associated with it.

For now, we are thrilled that Mom can be with my Dad OUTSIDE the hospital. She is at great risk for infection and will be placed on antibiotics to prevent that. But otherwise, she doesn’t have any restrictions to her activity. I pray that she has limited side effects to the medication and sails through this round with no complications.

These are my specific prayers:
*complete healing for my mom
*excellent response to the medication
*clarity about bone marrow transplantation
*prevention from infection and complications
*God’s glory would shine through this difficult situation

My dad has set up a caring bridge site that will give up to date information - feel free to check it and share with anyone you would like. 

I had such sweet time in the car with the Lord today - I listened to wonderful music (thank you Katie Foshea and Angie Phillips!) and listened to a wonderful podcast by Tim Keller called “Praying Our Tears” (thank you Dusty!).

“Fear not for I am with you; be not dismayed , for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” Isaiah 41:10


-Christy

May 5, 2017
Friends:
My dad has an update on caringbridge, but I thought I would send out an update as well via e-mail to my friends.

I went yesterday to MD Anderson - Mom and Dad have been there living out of a hotel for 16 days. I could tell they were stir-crazy and ready to get the heck out of there. My mom arose early for bloodwork today and then we met with the oncology team. All of her blood counts are VERY low - this is the expected outcome of her chemotherapy. Thankfully she did not require a transfusion of blood or platelets which would have held up our departure back to Austin. She has been told to wear a mask in public and in fact she really should not go out in public until her next lab check on Tuesday here in Austin - this is very hard for my mom. She loves to be on the go at all times.

Besides being tired from the anemia, she has had few side effects from the chemo (praise God!). The blood clot in her arm is slowly resolving as well - I am anxious to know when we can stop the blood thinner since that increases her risk of bleeding. She is on multiple antibiotics to prevent infection, as this is still the greatest risk for her.

On the way down to Houston last night, my minivan started acting strange - I was desperately praying it would not break down on the side of I-10! Thankfully I made it to the hotel, and we quickly took it to the nearest Honda dealer in Houston. They have since told us that it will be at least WEDNESDAY before the repairs to a piston problem (covered by warranty) will be completed. So I came back with Mom and Dad in their car! We will have to return to Houston (again!) later this week to pick it up. 

I think the reality of a “new normal” has just hit my mom. She will have to return to MD Anderson every 28 days for a 5 day stay in the nearby hotel to receive her chemo injections. This will be done indefinitely as long as the chemo is working. The option of bone marrow transplantation will also be explored the next time they return to Houston for round 2 on May 19th. 

I have seen my parent’s faith grow throughout this process and today we read 1 John 1:5 - “God is light and in him is no darkness at all.” We are all walking in FAITH and TRUST that the LORD IS GOOD ALL THE TIME.

Specific prayer requests:
-complete healing for my mom
-protection from infection
-God’s glory would shine through this situation
-we would be able to go see Celine Dion concert in Las Vegas on Saturday, May 28th

Thanks to each of you for your prayers - they mean so much.

Love,
Christy

June 4, 2017
My mom’s 3rd round of chemotherapy at MD Anderson will begin on Friday, June 16 - Tuesday June 20th. 

Overall, she feels well but she is very tired. She was quite anemic at the end of her last round of chemo and required one until of red blood cells to help bring her hematocrit back to a more normal level. When you are very anemic, you are tired and short of breath. Her counts have remained quite low since her last round ended on May 23rd. I think that has been a surprising aspect of the treatment. I expected her counts to shoot back up to normal between treatments but that has not been the case.

We will know more about the success of the chemotherapy after she receives 3 or 4 rounds total. At that time she will obtain another bone marrow biopsy and the counts will be evaluated. The hope is that the “blast” count will return to normal and that she will be heading toward clinical remission. That would be wonderful! 

If the chemo is not working, then we will need to have a difficult discussion about what the next step will be - bone marrow transplant versus another type of chemotherapy.

And something else to consider even if she goes into clinical remission is whether we will consider bone marrow transplantation sooner rather than later. A lot of this will be determined by if she has a perfect match or not. We will know more about this in the next few weeks. If she does not have a perfect match then bone marrow transplantation will be off the table. Based on her heritage, the bone marrow transplant team felt like she has a good chance for finding a perfect match but we will not know for sure until they run her data through the bone marrow bank.

Can I ask everyone between the ages of 18-44 years of age for a favor? Would you consider becoming a bone marrow donor in the bone marrow registry? You will not be able to help my mom, but you could provide life saving treatment for someone else in the future. The link for more information and to receive a donor kit is https://bethematch.org

A huge praise is that Matt and I were able to take my mom to see Celine in Las Vegas over Memorial Day weekend! We had so much fun and it was a really meaningful trip for all of us. Everything went so smoothly and I am so glad we got to share that special memory with my mom. I have already asked her where she wants to go next!

At the end of the day, I continue to pray that God will use this situation for His glory. I know many of us touched by my mom’s illness have felt the love and care of the Lord’s hand throughout the process. I am so thankful the Lord is good and that He never changes, even when everything around us feels like it is chaotic and filled with the unknown.

Here are my specific prayer requests:
* God’s glory would shine throughout this situation
* complete healing for my mom
* wisdom and guidance about bone marrow transplantation
* protection from infection

Thanks to each of you,
Christy

 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

July 2, 2017
I wanted to give a long overdue update on my mom. 

She completed round 3 of her chemotherapy last week at MD Anderson and it was not without some challenges. We all agree that MD Anderson is a beautiful facility with amazing resources but they are incredibly disorganized since you never have the same person twice helping you. It feels very disjointed and confusing while you are there. This is very unsettling to my parents because it makes them feel unsure about the care they are getting and whether this is the right thing they should be doing. This was especially true for my mom this past time. She also lost her cell phone on the second to last day and that just about made her want to quit going to MD Anderson all together. 

Upon returning, we were all able to agree that MD Anderson is simply a means to an end. I am hoping to go with them for the next round that begins on Friday July 21st. However, she will head down on Thursday, July 20th for a bone marrow biopsy. 

This next meeting and round in July is an important one. We will get results from the bone marrow biopsy which will help us determine if the chemo is working or not. We are praying that she will continue to have less blasts (immature cells) in her bone marrow. A blast count of less than 5% with a normal blood count (hematocrit and platelets) is considered “clinical remission” and this would be wonderful, encouraging news. Would you pray specifically for this?

Also, since we cannot pursue stem cell transplantation with MD Anderson due to insurance issues (at least until January), my dad has set up a meeting with the stem cell transplant team at UT Health Science Center in San Antonio THIS THURSDAY at 2:30 pm. My mom is feeling very unsure about stem cell transplantation altogether and I want it to be her decision about whether to move forward. Would you pray for wisdom in this area and that the meeting would go well?

It has also been very difficult to see how my dad is treating my mom throughout this process. My Dad and I had a difficult conversation over the phone two nights ago. I hope he heard me as a loving, concerned daughter when I spoke truthfully to him about his recent selfishness to love her well. He has been served faithfully by my mom for 50 years and they have fallen into routines that need to change now. Will you pray the Lord softens his heart and gives him wisdom about how to love my mom well through this process?

Here are my prayer requests:
*Clinical remission with less than 5% blasts on the next bone marrow biopsy
* appointment in San Antonio about stem cell transplantation - wisdom about whether to pursue
*softening of my Dad’s heart and that he would love my mom well

Thanks to each of you for reaching out and praying for me and my family. I appreciate it so much.

Love,
Christy

July 21, 2017
I just got back from MD Anderson today. We got some great news today!

Mom’s bone marrow blast count is 1%! This is in the range of normal, so she is in the initial stages of “clinical remission” which is such an answer to prayer. We are waiting now for the other blood lines to return to normal. Her platelets are already back to normal, but her red blood cells and her white blood cells are still very low. She is tired and short of breath from the low red blood cells that causes anemia. And she is at great risk of infection because her white blood cells are low which is called neutropenia.

The doctor decided to hold off giving her the next round of chemotherapy today. Instead, she got an injection of Neupogen, which will stimulate her bone marrow to produce white blood cells. Mom and Dad will return to Austin on Sunday because some of Mom’s friends are throwing her a birthday celebration in Houston on Saturday night. 

On Monday, she will head to Texas Oncology in Austin where her blood count will be checked again and most likely will receive another shot of Neupogen to stimulate the bone marrow to produce more white blood cells. The goal is the get her out of the danger zone with infection before the next round of chemotherapy is given. The goal is to have her Absolute Neutrophil Count (ANC) greater than 1000. Currently her ANC is 60 but the doctors are hopeful that with a few shots of neupogen she will get to that level. 

On Wednesday, July 26th, she will have labs drawn again in Austin and those lab results will be relayed to MD Anderson. This will determine when the next round of chemotherapy will start. We are thinking it will probably be on or around Thursday, July 27th, but no one knows for sure at this point. They will have to return to Houston to get the chemotherapy.

Going forward, the start of further chemotherapy rounds of 5 shots will be decided on a week by week basis. The start date of each round will be determined after blood counts are taken and evaluated by the doctors in Houston before proceeding. This causes a lot of uncertainty with my parents because they are not sure going forward which dates they will need to be in Houston for chemo. Each time they go it is a 5 day stay as she receives the chemotherapy there. The drug can only be given at MD Anderson since she is in a study with a protocol. I expect the next bone marrow aspiration will be done after 2 more rounds of chemotherapy which also will guide the course of treatment.

The hope is that all of her blood lines will return to normal without needing neupogen or transfusions of any kind. If this occurs, then there is a possibility that the chemotherapy can be spaced out a bit more - maybe going 5 or even 6 weeks before injections. But there are a lot of unknowns about that at this point.

I was hoping that my mom would be willing to proceed to stem cell transplantation once her blast count was below 5%, but at this point my mom is really at peace with simply waiting and going forward with what she is comfortable with - the chemotherapy. We are still waiting to see if she has a stem cell match anyway. . . this information should be available next week. If she does not have a donor, then stem cell transplantation is off the table. But if a perfect donor is found, then I hope that we may revisit this option. But as my mom understands there are a lot of risks to this procedure. . . she simply is not ready to take those risks yet and I respect that. Selfishly, I want her to be around for many more years to come and know that SCT offers the only chance for cure, but this is certainly not a guarantee. . . many things can go wrong during this procedure. 

These are my prayer requests:
* Mom would proceed to a true clinical remission, with all blood lines returning to normal without transfusions or neupogen needed
* protection from infection
* wisdom and agreement amongst all of us about how to proceed with treatment
* that God’s wisdom and kindness would be apparent and that we would press into that with trust and assurance that He is good - All the time

-Christy

August 17, 2017
Friends:
Mom, Dad and I went to the Texas Transplant Group in San Antonio, Texas to learn about the possibility of stem cell transplantation for Mom.

We had met Dr. Chao about a month earlier and they drew blood at that time to see if she had any possible donors for the stem cell transplant. When we did not hear from them we assumed there weren’t any, but to our surprise at the appointment, she has about 25-30 perfect matches. I was amazed and blown away. 

Mom has indicated she wants to go for the stem cell transplant. I think we all understand the risks as best we possibly can before entering something like this. The mortality is 10-15% the first 2 years, and the most dangerous and challenging time is the first 100 days after transplant. I think what we all fear is a lingering chronic illness from the transplant that would prevent her from living her life. 

But honestly that is what she is dealing with now - frequent doctor appointments, chemotherapy every 4-5 weeks (for forever), and transfusions when needed. This whole process has aged her a lot. A strange side effect to either the chemo or prophylactic antibiotics/antifungals she takes is severe foot pain that can be completely debilitating.

So what is next? The team in San Antonio looks at the matched donor list and chooses the best 2-3 candidates (preferably young, male, living in the US) and reaches out to a few of them. If they agree, they are sent for screening bloodwork. This takes about 2-3 weeks or so. If all goes well, they are then asked when they are willing to donate the bone marrow. Based on that date, my mom is admitted to the hospital one week before this date. During that time she receives high dose chemotherapy with all of its side effects (hair loss, nausea, etc) to kill off my mom’s bone marrow.

Meanwhile, the bone marrow donor receives 4 days of injections to stimulate their bone marrow, and then hooked up to a dialysis-like machine for 4 hours to collect the cells. The cells are then flown to San Antonio and carried to the hospital where they are infused just like a regular blood transfusion.

A bone marrow transplant is just like any organ transplant. The biggest fear is rejection and complications from infection. The first 30 days she will need to be in the hospital in San Antonio under close surveillance. The following 70 days she will need to stick around San Antonio in order to come to outpatient appointments 2-3 times a week.

Day #100 is a huge milestone. If all is going well, she can start coming off some of her immunosuppressive medications and return to Austin. The ultimate goal is to be off all meds with an absolute cure, normal life span and feeling good - this is what we all want!

The specific timing of all this is all up in the air. It could be as early as late September or as late as end of October. There is some urgency to moving forward before mom has an infection or the chemotherapy stops working. The transplant works best when she has the least amount of cancer cells (blasts) in her bone marrow. And right now they are at 1% which is the best we could ever hope for.

I am praising the Lord that:
* we (Mom, Dad and I) are on the same page about moving forward. But we know that Mom has the right to change her mind at any time and I can say I will support her no matter what
* Mom has so many transplant matches - this is amazing. Some people have none and the door is shut for them
* I am not working now so I have the ability to help support my mom emotionally and physically when needed

Prayer Requests:
* Mom would remain in remission (blasts < 1%)
* Healing of her foot pain
* Prevention from infection
* Stem Cell Transplantation logistics would move along smoothly
* COMPLETE HEALING for Mom

Thanks to all of you for your prayers and support,
Christy

“The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness.” Lamentations 3:22-23


After the news in March, we scrambled to find a photographer that would take some nice family pictures. I thought these turned out great. And the best part was that they were spontaneous so we did not have to spend a lot of time thinking about them unnecessarily. I am so thankful we have them.















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