Sarah spent Tuesday until midnight in the ER with another fever. She had blood work and IV antibiotics and felt a little better. Yesterday before heading to Duke with Gage for the already scheduled appointment, she started running another fever.
They told her yesterday at Duke that the fevers are definitely not related to the tumor and they don’t know know what is causing them. They are going to set her up with an infectious disease doctor to pursue that issue separately.
As for the tumor treatment plan, there is a lot of information, some shareable, some not. Sarah said it was like drinking from a firehose as far as all the details they were given. And that is not a bad thing, just a little overwhelming for a young couple on the cusp of their marriage and the rest of their lives, trying to make sense of it all.
The doctor was running about ninety minutes behind schedule so they didn’t get back home till 10 p.m. A long, exhausting day.
I’ll just hit the highlights of the visit:
The most positive news that came from the appointment is that Dr. Riedel is comfortable with waiting until after the wedding to start treatment–a huge relief for all of us.
They are setting up a colonoscopy for her soon since desmoid tumors can be interlinked with colon issues.
They will not be doing surgery because of the size and location of the tumor. Also, the doctors have found out over years of treating desmoid tumors that they almost always grow back and the patient just ends up having endless, pointless surgeries to deal with inevitable recurrences.
Chemo will not happen unless it’s way down the road and a last resort. She reached her lifetime quota at age six for the main chemo they would want to use, although there are others they could try, if necessary.
They will be starting her on an oral med; not chemo, but something that will help to control the growth of the tumor and hopefully shrink it. It does have some side effects to deal with.
She will have another scan in three months to monitor the growth of the tumor and treatment plans will be added or altered, as necessary. They are basically saying that she will have the tumor permanently as there is no viable way to remove it. (Although of course, we are praying for a miracle in that regard.)
It feels strange to write those cold, hard facts when the situation is so much more than just fact. It is comprised of so very many emotions, and challenges, and things I can’t write about here. Suffice it to say, the past few hours have not been easy ones.
But the one handhold of joy we have to grab onto is that Sarah and Gage can spend the next four weeks fully concentrating on the wedding and put aside, for a while, their medical worries.
I took this photo yesterday running up to her room for something. It always startles me a little bit when I see CT/MRI scan disks in the midst of the trappings of regular life.
This morning she and Steve and I sat and talked for a while, with her wrapped in a blanket, trying to eat a little breakfast, and making good use of the tissues.
It is such an honor for Steve and me to join with Gage in helping to carry our sweet Sarah’s burdens and lift her load.
Did Sarah have the cancer back after all though year cancer free????
Anna,
No she doesn’t technically have cancer again. She has a tumor that is locally aggressive and is treated by an oncologist with many of the same methods used to treat cancer.
Oh, my. I’m so sad for Sarah, for you, Gage, and all the Smithies. Will continue to pray for healing for her.
On a happier note, I bought myself a new pair of stretchy capris to wear to the wedding (because who would know?).
Jan,
After all my fruitless attempts to find a MOB dress, I may just join you in the stretchy capris camp 🙂
I am so glad tumor treatment can wait until after the wedding. Praying the iID doctor can find the source of the fevers and get Sarah better so she can enjoy the wedding planning and fully enjoy their special day. Sarah is a living miracle and I pray there are more in store for her. Praying for all of you
Thinking of each of you and hoping there have been no more fevers the rest of this week and that Sarah is getting well. How exciting that the wedding is coming so soon and what a gift that she can hold off the treatment till after the wedding. We will pray for minimal side-effect of the new treatment and strength and a profound awareness of God’s presence for the journey for each of you n This journey is not easy for any of you. And yet, how blessed Sarah is to have such phenomenal parents and a loving brother and now also the amazing Gage in her life walking this path with her. Never underestimate the role you play or the difference you make in her life abs many many others
Jenna,
Unfortunately, she’s still been running fevers every day; not sure what the answer to that is.
But during those few good moments of every day, we are glad for the joy of the wedding to think about.
As always, thank you for always well-chosen words of encouragement.
Praying for Sarah and all of you as you navigate the treatment plans ahead, and tor the doctors to get to the bottom of the fevers.
I’m glad treatment can begin after the wedding.
Heather,
Thank you for commenting and especially, for your prayers. Bless you!
My ‘Ladies Connect Group’ @ Biltmore Baptist sent me a card that reads – “Good News for today: God is still in charge and in control! He is beside you, behind you, before you, and for you! No doubt about it, no way around it. His plan is good, His power is great, and His best is yet to come. Matt Anderson
Claiming Strength & Perseverance for Sarah, Gage, Becky & Pastor Steve
Cousin Gloria Smith
Asheville, NC
Gloria,
What a great verse on that card! It says everything that needs to be said.
Dear Becky (and Family including Gage), thank you for taking the time and effort to provide us with such a complete (and mom-heart-wrenching) report. You are always in our thoughts and prayers. I want to say to your readers who may wonder about miracles and praying for them, I am a living example of a LIFETIME of miracles. Yes, I’m talking about events throughout my life that have no logical explanation other than to be called miracles. (Including discovering “Smithellaneous.”) That doesn’t mean that my life has been without major disappointments and heartaches – it just means that the disappointments pale in comparison to the miracles that I have experienced. I could write a book… and maybe I should. Yes! Pray for miracles! They happen every day! They happen even when you don’t expect them, even when you don’t pray for them. Maybe they’re happening right now in your life, and you don’t recognize them. So yes, I want your readers to pray for miracles in the lives of the Smith family! Expect miracles! Thank God for miracles! If your brain takes you down a path of “Yes, but what if…,” get off of that path! God and your faith are at work – don’t let negative thoughts derail them. And as Winston Churchill said, “Never give up! Never give up! Never, Never, Never, Never, never give up!” Love, Fred & Lucy
Fred and Lucy,
What beautiful words told from a heart that has been through the best and worst of times. Thank you for taking the time to share words that are not just an encouragement to the Smith crew but everyone who reads them.
Many blessings to you both today.
Dear Becky, Thank you so much for your kind comments. Fred & Lucy
I am glad to hear that at least a bit of good news was in the mix- waiting until after the wedding. Also, I LOVE LOVE LOVE their invitations. They are PERFECT for them and really show some of their personalities.
I will continue to hold you all close in thought and prayer.
Lord’s Blessings!
Krista,
Yes, we are thankful for the treatment to wait. We were afraid they were going to want to start chemo next week, or something.
We agree–those invitations are perfect for the two of them and the style of their wedding.
Thank you for the update. Sarah and family are continuing in my prayer. Sarah will a beautiful bride. Please know we will continue to pray.
Suzie
Suzie,
Yes, I can’t wait to see Sarah on her wedding day!
Thank you for updating us. Thinking and praying for the Smiths every day.
Thanks so much, Ellen.
Prayers for happy wedding planning! I hope Sarah’s fevers stay under control so she can enjoy this sweet time to the fullest. She is such a living miracle and I pray she continues to be. Love, prayers and hugs sent to all of you.
Sue Ellen,
Living miracle. That’s a perfect description for Sarah. We looking forward to another miracle for her!
I have had a long tiring day but wanted to say that I am most definitely praying for that miracle. I shared her story today with two friends and they will also be praying.
Looking forward to wedding plans and pictures of course. Good luck with all of those plans. I know parties aren’t your thing. 😉
Hugs and prayers for the Smiths and Gage’s family. I’ve missed his last name somehow.
Love Buff
Buff,
Thank you so much for sharing Sarah’s story with others; that means so much.
No, parties are definitely not my thing but thankfully, I have my daughter-in-law and her sister who are sweating most of the details. I still have plenty on my plate but at least I have party-planning professionals thinking of all the things I would overlook.
Gage’s last name is Long. 🙂 So we will soon have a Sarah Long in the family.
I’m so sorry that the news and treatment plans weren’t all you hoped they would be. I’m glad treatment will wait until after the wedding and I hope that the other issues can be resolved. I hope that Sarah and Gage can enjoy this happy time in their lives and can feel the prayers of so many.
Gayle,
Happiness and prayers. Two things the two of them definitely need in this challenging time.
Thank you for all the encouragements you have sent our way through your comments over the years.
Thankful that the treatment can wait until after the wedding. I know that must have been a relief to hear. Prayers that the infectious disease doc can pinpoint what is causing the fevers, that it is easily taken care of and that the colonoscopy goes well. I am due for another this year – not looking forward to the prep, the procedure itself isn’t too bad.
Phyllis,
Yes, we will definitely be relieved when the fevers are figured out. She had another one last night and this morning.
Glad you are keeping up with your colonoscopies. That’s a good thing!
Becky,
Thank you for the update. Continuing to pray for Sarah, for all who love her, and for those caring for her.
Praying that you all know God’s presence in a special way.
I have a song to suggest for you. It has ministered to me so much over the last year. It’s by a group called “Here Be Lions.” The name of the song is “I Speak Jesus.” My favorite version is one where they both play and sing the song. There is a version with Darlene Z also–but I like the HBL version best. You could find it on Pandora or Spotify—or wherever you may get music. Anyway, I thought it might minister to you. Link to the lyrics: https://zionlyrics.com/here-be-lions-i-speak-jesus-lyrics
DeLynn,
Just listened to the song; LOVED it! So much truth in it. Thanks for sending it.
I loved your words, “Praying for Sarah, for all who love her, and all those caring for her.” That made me tear up. Those prayers for ALL of us are so needed.
Becky, thank you so much for thinking of us and updating us so quickly with so much on your mind and heart. You have such a sweet spirit to think of all of us while going through your own burdens. Know that prayers are lifted for Sarah (and Gage and you and Steve) God is in the miracle business. Love to all of you and so excited to hear about the wedding plans. I LOVE the quirky invitation and so looking forward to the Livestream. Though we have never met in person, my heart is with you
Gail,
Yes, it’s nice to have wedding plans to cheer us up in the middle of all the medical stress. Grateful for a happy spot in our lives!
Thank you for your encouraging words and the ongoing prayers.
Thank you for taking time to update us. So glad focus can be on Sarah & Gage’s wedding. Prayers for answers and treatment of cause of the fevers. Prayers for multiple miracles…why ask for only one? Love you all!
Guerrina,
Multiple miracles. Sounds like a good thing to me!
A miracle would definitely be the right thing to be in Sarah and Gage’s future! Raising my prayers!
Liz,
Thank you so much for the prayers and the love sent long distance.
Adding our love and prayers to the others that have commented before me. Thank you for sharing this journey with your blog family and allowing us to be part of the sad and the glad of your days. XO
Courtney,
Love the line, “The sad and the glad of your days.” Such a perfect way to sum up what we’re dealing with.
Becky, thanks for taking the time to update. We are all thinking of sweet Sarah and all that she is coping with. It’s a lot. Here’s to hoping the medication is helpful. I am optimistic that Infectious Disease can get to the bottom of her fevers ASAP, they are definitely in the detective business. We can’t have her feeling so lousy on her wedding day. Hugs to all.
Lesley,
Yes, we definitely need a doctor detective in our lives right now. Praying we get to the right one who can get to the bottom of this. She’s been having fevers every day now.
Praying.That’s all I have at the moment. Of course, that’s a lot, isn’t it?
Jan,
Yes, it IS a lot!
Sending you all love and hugs and prayers…there are no other words.
Suzanne,
Yeah, sometimes words don’t come real easily, do they? Thank you for the hugs and pryaers.
Praying and wishing for simpler times and all the underlining and overwhelming issues that are wrapped up in this tumor and treatment plan…praying Sarah and Gage (as well as you and family) can fully enjoy all the fun in the wedding plans…
Monique,
“Underlining and overwhelming issues.” That sums up things so well. But so thankful that there is the joy of a wedding coming!
Continuing to pray over all the aspects of the treatment situation. God is never out of options or ideas so I will continue to trust in His plan and His timing for healing.
Taylor,
So great to hear from you!
Thank you for the prayers and the reminder that God is never out of options. Such a good thing to remember.
Wouldn’t we all have wished that this tumor could have been magically whisked away. We think of Sarah every day, with all our love and all our hopes. I am glad she and Gage have their wedding plans to give them joy and then they will move forward into their future together, hand in loving, trusting hand.
Thank you for the updates, lovely Becky xxxxx
Teresa,
Yes, magically whisked away would be a grand thing, indeed. In the meantime, we are grateful for your love and hope sent this direction.
They are already getting wedding gifts in so that’s been fun for them. Makes everything seem a little more real.
Prayers for you all as you go into the unknow, and that the medication will produce little side effects and much relief. Prayers that they can determine the cause of her fevers.
Patti,
So many prayers. Thankful for so many prayers said.
Wow, it does sound and I am sure feels overwhelming. All I can say – we are continuing to pray and ask that His loving arms will enfold each of you.
Sharyn,
Definitely a little on the overwhelming side. But leaning on everlasting arms.
What a burden, but so thankful she has so many to share it with, to help with the load. 🙁
Thankful for a respite from treatments and doctors’ visits so she can concentrate on her upcoming wedding!
Stefanie,
Respite is a very good word!
With you in spirit, support and love.
And prayers. Always prayers.
Lee Anne,
Thanks. And always thanks for those prayers.
Hugs to all. Praying for all of you.
Thanks so much, Catherine. We appreciate you!
Not sure of the right words.🥺
Just sending so much love.❤
Eb,
Your comment has stood out in my mind ever since I read it because I can so relate to it.
So many times I have also not been sure of the right words. But just your sending love helps to fill in the spaces left by no words.