Our last update was four weeks ago (5/13/18). You can find that here: https://wp.me/p6gPya-1UN. This will update you on the last month and what is coming from here. And for those who just want photos – those are at the bottom of the update.
What’s Happened the Last Few Weeks:
- When we came in to start the next treatment (on 5/15), the level of methotrexate in her body was still too high. The oncologist had never seen it before. It had been an issue of prayer for us for weeks. This is the best treatment for osteosarcoma, but it seemed as if it wouldn’t leave her body.
- They decided to start her on the other combo chemo of cisplatin and doxorubicin. The bad news is – that is the very difficult chemo. Of the 18 rounds she will have, four of them are that difficult combination. But the good news is – it was her last one… ever. She will never have to have that combo of drugs again.
- More good news came when we heard the lab machine was not reading the levels of methotrexate correctly. The various oncologists at the hospital began discovering they each had patients who couldn’t eliminate metho from their system. So they sent a test to another lab only to discover that the level of metho in Emily was undectable. The lab machine was the problem! Now, Emily does take longer to clear than most (typically five nights), but the longest has been six nights. The machine was telling us it was still in her almost 3 weeks after treatment. So – although it has put us behind three weeks, we are back to the original plan that best treats her cancer.
- Through all of this, Emily continues with therapy. When she’s in the hospital, they come to her room and if it isn’t during her sickest days, they will have her do therapy. When Emily is home, they drive down 3 times a week for therapy. Things are progressing. Just this week, they told her she no longer needed to wear the brace. She uses crutches, but at least the brace is off.
- Morgan is now home for the summer. She is doing an internship at 2nd Baptist Church in Houston (a church with over 30,000 weekly attendees). She comes down to the hospital when she is able. Having her home is a great encouragement to all of us.
- After her doxorubicin and cisplatin treatment a few weeks ago, her body needed two weeks off to recover. So Emily was at home resting and enjoying life without chemo for two weeks.
- We came in on June 6 for another round of methotrexate and we are here at the hospital now. As typical, the first two days are difficult (Wednesday/Thursday) and by Friday she is feeling better and waiting as fluids constantly run through her system to clear out the chemo.
- If Emily clears at her typical rate – she will be sent home on Monday and will return Wednesday to start chemo week #11 (out of 18).
- Morgan is headed out tomorrow morning for camp with the youth group where she is serving. They have over 2000 students from the church go to the week-long camp. She will return only to head out for Jr. high camp two days later. She is having a great time serving at the church and with the students.
- From June 22-24, Emily is being flown to California for a Christian retreat for young adults with cancer. She is going with her friend Brooke, who has brain cancer. It is an amazing ministry. Check out the website. It is pretty amazing: https://www.stillwaterscancerretreat.org/. We are so thankful for this opportunity for Emily. She was scholarshiped by a ministry called Spark the Way (http://sparktheway.org/). Brooke’s mom, Deanna, told them about Emily and offered to sponsor her to go to the retreat.
What you could pray for:
Our recent praises:
- We are thankful that although Emily was delayed an extra couple of weeks with the faulty methotrexate levels, she is now back on track with her chemo.
- We asked you to pray that the methotrexate elimination was a unique situation and it won’t happen again. God answered that prayer by having the cause be the machine, not Emily’s body! We are so thankful for that.
- We are thankful Morgan is home for the summer.
- We are thankful Emily was scholarshiped to go on this retreat. What a great blessing that will be.
Our long-term requests are the same:
- That God would be glorified in and through Emily and her Osteosarcoma, and that we all would submit to His glory being our priority – whether in life or death and whether the news is good or bad.
- That Emily and our entire family would grow through this (we believe God is always out for our good – which ultimately is to become more like Jesus).
- That God would heal Emily and she would live a full, long life serving and pleasing Him.
- That Emily (and all of us) would have peace and joy. This did not take God by surprise and He is for us.
- That we would be sensitive to how God wants to use this in all of our lives.
- That the cancer has not spread at all.
Our short-term requests:
- Pray that Emily’s methotrexate numbers will be low enough to go home by Monday. And then pray she can begin the next round on Wednesday. We want to keep on track.
- Pray that Emily’s body will be strong enough to travel to California on June 22.
- Pray that Emily’s chemo schedule will work that she can attend the retreat.
- Pray that the retreat will be encouraging, refreshing, and challenging spiritually for Emily. She’s really looking forward to it.
- Pray that Emily would be able to walk without a limp within six months from surgery (mid-September). It will require hard work and good enough health to be able to work hard.
- Pray that Emily can restart college this fall.
- This week, Sue and I have met two heartbreaking situations. Could you pray for Sam and Chris? Chris has osteosarcoma, and after his treatments, it came back and has spread aggressively. It seems pretty desperate. Sam (from Minnesota) is another cancer patient who has not had successful treatments and they are now trying all types of experimental treatments for him. He is a 21-year old two doors down from us. He hasn’t left the hospital since March. We are reminded every time we are here that most who come to MD Anderson are looking at last options. We are so thankful, it was our first choice (because we are local).
- I have been praying Psalm 33:18-22 over Emily recently. Maybe you could join me:
18 The eyes of the Lord are on those who fear him, on those whose hope is in his unfailing love,
19 to deliver them from death and keep them alive in famine.
20 We wait in hope for the Lord; he is our help and our shield.
21 In him our hearts rejoice, for we trust in his holy name.
22 May your unfailing love be with us, Lord, even as we put our hope in you.
- Finally, you will notice the picture of the wood frame we gave Emily for this round of chemo (the last photo below). It says “Don’t doubt in the dark what you knew to be true in the light.” Pray that Emily’s faith will continue to grow stronger through all of this.
Some Photos to Get a Glimpse of Our Last Few Weeks:
This is doxorubicin (the red devil, it is nicknamed).
The large, brown bag in the middle is cisplatin – the one that makes chemo the worst for Emily. This bag is the last bag she will ever suffer through!!
Morgan is an RA at Liberty but her RD let her come home 2 days early to surprise Sue and Emily. Emily even stayed awake for 30 minutes she was so excited – at a time she normally only wakes up to rush to the bathroom.
This is one of Emly’s favorite nurses, Allie. She doesn’t work in this part of oncology anymore, but stops by most times she is working to see Emily.
This is a rehab session with Alex. Emily’s pole is never far away. It is always connected to her port in her chest feeding her fluids to wash out the chemo.
Working hard to bend the knee.
Morgan is my soda sherpa whenever she wears her overalls. (love you, Mo)
This is Maddie from Spark the Way (be sure to check out the website). She runs the ministry that scholarshiped Emily to attend the Still Waters Cancer Retreat (check out that website too). Maddie (a cancer survivor) told Emily and Sue she has been looking for Emily since Passion. She was in the room when Louie Giglio told Emiy’s story and she’s tried to find her ever since to get her to the retreat. We are so happy that she found us through our friends, Deanna and Brooke!
I admit it freaked me out a bit when I walked into our bathroom to see Emily’s hair. Sue had washed it and was getting ready to blow dry it.
It is always a blessing to get gifts from friends. A friend of Emily’s (Gaby) made her a box full of sunshine (so everything was yellow and orange). It is amazing how these types of things lift her spirits through this season. Thank you – again – to all of those who have gone out of the way to encourage and bless our family!
On the worst nights of chemo, we try to cover everything that has a light – to help Emily sleep as well as possible. It is interesting how dim lights can seem very bright to her during chemo
Saturdays are dog therapy days. So dogs come and visit Emily. It is a highlight every Saturday.
Today, Emily wanted OUT of the hospital. So her nurse hooked her up with fresh fluids so we could take a walk.
Around here – walking with a pole of fluids or chemo isn’t strange. People are used to it.
Sadly, the only place close enough to walk to on a Saturday is McDonalds. It is in the hospital next to ours. It is a heart hospital. Question: Should there REALLY be a McDonalds in a heart hospital?
Headed back to our second “home”
One night Emily was feeling well so I took Sue out to eat. Normally, if we go out, we grab something and bring it to the hospital. Since Emily was feeling good, I took her to the original Carrabba’s. I happened to be wearing my cancer shirt and the manager came over and asked why I was wearing it. I told him Emily’s story and he told us his. He finished his treatments at MD Anderson eight months prior. It was great to hear his story and promise to pray for each other. A few minutes later, he sent a complimentary appetizer to our table. Two things were abnormal about the appetizer: first it was a $22 appetizer. I’ve never spent $22 on an appetizer in my life. Second, it was seafood. Sue doesn’t like seafood but she knew she needed to eat it. And she actually liked the crab meat. My wife’s taste buds might be growing up. It is so exciting!
One of Emily’s friends she has made since being here has fought osteosarcoma, just like Emily. Today she finished her last chemo treatment so we were able to be there for her bell ringing ceremony. Wow! It is joyful and so emotional. I can’t wait for that day with Emily. Family, friends, and nurses gather around and she rings the bell to celebrate!
On an afternoon Emily was feeling well, we sat up on the observation floor and enjoyed the Houston skyline and sunshine.
Each chemo week I give Emily a verse or statement that friends have made for me. By the way, I’d love you to support their business. You can go HERE (https://www.facebook.com/solittletimedesignco/) to see their products. They will also custom make signs as they have been doing for me through this season of our lives. Thanks Kaitlin and Hollie!
I would love to see their company “So Little Time Design Company” be blessed because of the blessing they have been to us.