It never occurred to me when we walked into Duke yesterday that Sarah’s room would be on the fifth floor.
Why is the fifth floor so important?
It’s because the fifth floor is the place where she had her bone marrow transplant back in 2003. Since Dr. Driscoll was her doctor then (and now), and since the BMT floor is his terrain, we find ourselves back on the pediatric transplant floor again.
Back when she was seeing him for follow up in around 2008.
And a photo from our visit Thursday. (One of his signature things is that he always scootches down a little so that he’s a little closer to Sarah in height.) Seconds after I snapped this photo, he reached down to give her a sweet hug.
He has been working hard to coordinate people and procedures and keep things on schedule for her. We are so grateful for this great and compassionate man.
Here we are checking into the bone marrow unit in January 2003. What’s funny is that her small green suitcase in front of Nathan just happens to be the very suitcase she packed for this trip!
I have to say that from both Sarah’s and my perspectives, it was surreal to walk these halls again with so many memories swirling around us. We are so thankful we are NOT in the middle of a bone marrow transplant–truly the most difficult season of our lives.
Sarah was telling one of the nurses this morning that she and Gage were engaged to be married and the nurse laughed and said, “I think you’re my first patient ever who has said that. We don’t get a lot of that from our 5-year olds.” Nice to find a reason to laugh and wonderful to see Sarah’s face lighten for a moment.
I stayed at the hospital with Sarah last night; thankfully, she had a quiet night and rested fairly well. I didn’t take my usual melatonin (because I wanted to be alert if she needed me) so I ended up with just two hours of sleep. Gage arrived about 9 a.m. from the hotel so I was able to head back there for a snooze and a reprieve. (And thank you to our friend–you know you are–who helped to cover our travel, food, and hotels this week. We are so appreciative!)
Thankfully, in the unit we’re on, Gage and I are allowed to switch off as often as we want and even have both of us in the room with Sarah at the same time. That makes everything so much more simple.
Today’s medical dance card had another CT on it which required a larger IV in her other arm. I think she’s had six or seven IV’s in the last few days. Tomorrow she is scheduled for a bone marrow biopsy and a fine needle aspiration, mainly to check why her bone marrow is not producing platelets. They will probably give her a platelet transfusion before the bone marrow biopsy to keep her from excessive bleeding.
The mass will also be biopsied tomorrow so it will be a busy day for our gal. Unfortunately, it will take 3-4 days for those biopsy results to come back. Two members of the surgical team came in this morning and said that the pediatric surgical team is coordinating with the oncology surgical team to decide who is doing the surgery and what the steps forward are going to be from here. Everyone is eager to see what that mass is all about.
The surgeon said that once the biopsy is back, he will meet with 15-20 other doctors/surgeons to discuss her case. And he said if they can’t come up with an answer, they will reach out to other institutions. It’s so very reassuring to know that there are so brilliant minds at work to solve this problem.
He is prone to think the symptoms of infection are being caused by the mass but he said he could be wrong; no one will know until the biopsy results come back and the aforementioned discussions take place.
Gage has been amazing in caring for Sarah–rock-solid, tender, and loving.
This was my view of her bed last night when I couldn’t sleep. I stared at this sight by the hour, remembering the nights of intense pain we had spent down the hall during the thirty days of the transplant process.
Finding myself back in our old stomping grounds last night, there were tears shed, prayers said, and a mama heart that yearned to see her beautiful bride-to-be daughter up on her feet and smiling and laughing again.
But until then she is watched over by us all–God in heaven, Gage and I in person, and the rest of you from all over the world.
Thinking and praying. Thank you for the updates:
Thank you for all the updates. Praying for everyone.
Dear Becky, Thank you so much for taking the time to do these updates. I was happy to read that you are getting some rest and that you and Gage can switch off or even be in Sarah’s room together. One thing I have never mentioned is the encouragement I get from reading the comments on your updates. Your readers provide an additional source of inspiration for all who carry you and your family in their hearts. Love, Fred & Lucy
Fred and Lucy,
That is SUCH a great point. Reading through the comments on this blog is beyond inspiring; I have the best readers! (and commenters)
Praying that Sarah gets some answers today to her medical issues. Dr. Driscoll sounds like a wonderful doctor. I know it helps to have a special doctor that is so caring and compassionate and that Sarah has a history with.
I love the pictures of Gabe holding Sarah’s hand. So much love comes through. He will make a wonderful husband. (and no doubt Sarah will be a wonderful wife) So glad Sarah has so many people loving on her and praying for her.
Love and prayers.
Thank you so much for the update. Prayers, prayers, prayers!!
We continue to pray for ALL of you, but especially for Sarah and her medical team. May total healing come quickly by the hand of Jesus, using whatever method He chooses. So glad you are there at Duke and that sweet Gage is also by Sarah’s side.
Praying for all of you. Thank you for keeping us updated. So much for such a young relationship to endure. I’m glad Sarah (and you) have Gage by her side. Sending love and hugs.
“He will raise you up on eagle’s wings, bear you on the breath of spring, make you to shine like the sun and hold you in the palm of His hand.” This chorus has always been a comfort to me in times of duress. Today I offer it over and over for Sarah and those who love her.
Kristy,
LOVE that!
I’ve been praying all day and will continue. I’m just so very thankful that Sarah can have loved ones with her in the hospital. I know I keep saying it, but it isn’t possible everywhere yet, and it is HUGE. May God wrap you all in His perfect blanket of peace as you wait for results.
Pam,
Yes, it IS huge. Beyond huge. So grateful.
Praying for you all. I’m so glad Sarah has such a strong support system.
Reading this just gives me chills. I am so sorry for what your sweet Sarah is going through, and you all,too, as you go through this with her. The look on Gage’s face is pure love, and that speaks volumes for him. Thank you so much for the update. I know you are beyond mentally and physically exhausted, but I’m so thankful to see an update. Continuing to pray for Sarah and all who are working towards helping her get better, and you all who are waiting on the sidelines.
Thank you so much for this update Becky. So many of us care so deeply for you and your family and are praying for Sarah.
I’m glad she has Dr. Driscoll’s wise and gentle care looking out for her as she faces this situation as well as this huge team of specialists who will all do their best to get the needed answers and create a very good treatment plan. Sarah, too, is a fighter. She learned at such a young age to be a graceful warrior against cancer and that is going to very much help her now.
Today is Easter, a day of miraculous hope, and I am praying with hope for Sarah. I’m praying for you as well, Becky, and my small prayer for you tonight is that you will be able to get a good sleep so that you will have physical strength as you face the coming days.
Please continue to let us all know if there is anything at all we who are afar can do to help or support your family as you face this situation.
Wishing you a happy Easter in the midst of this very difficult situation,
Jenna
Thank you, Jenna.
I slept SO well last night!
I will be praying throughout the day Monday for you all. What a blessing to know that as much as you, Steve, Gage and Nathan live her that the risen Savior loves her even more.
Hope you get a bit more sleep tonight to carry you through the busy day tomorrow.
Love the nurse telling her she is the first engaged patient.😊
He is risen! So glad that He is and has always been walking with Sarah every inch of the way.
Your little warrior has her own group of warriors praying for her, and keeping her company. (I think I’m a little bit infatuated with Gage…. from the height of about 50 years above him). You must be exhausted, Becky, but I know you’ll continue to do what Sarah needs you to do.
Thank you for the update. So hoping tomorrow goes smoothly. This must all feel so surreal, its such a lot to wrap your mind around. I agree, the fever has to be related to the mass somehow. Please let them get to the bottom of all of this very soon.Hang in there mama.
That you are willing to take the time and energy to keep us updated is so appreciated! I cannot imagine what this is like for you all. My prayers are with you.
Prayers, prayers, prayers.
It’s nice to be able to see where you are. We are all right there in spirit with you.
Sending our never ending love and continual prayers.
Love, Deb
Praying for all of you. Thank you for the update.
Several months ago I was talking to a friend whose teenager had just had a visit to Duke. My friend was most impressed by how cooperative and coordinated the doctors at Duke were. She said multiple disciplines all worked wonderfully together to get her cared for. Sounds like that’s the exact experience you’re having too. I suppose Duke has a world class respiration for a reason! 🙂
Ellen,
Yes, we’ve been so impressed by the cooperation between all the different specialties. There is strength in numbers and in especially in a complicated situation like this.
I’ve only commented a few times but have been following you for years. Sarah has been heavy on my heart the last few days and I am praying for her healing as well as strength, comfort and peace for you, Steve, Gage and the rest of your family.
Thank you for the update. So thankful you and Gage can both be with Sarah. I am praying and praying for her and all of you.
so glad that you and Gage can be with Sarah in her room. continued prayers, that’s for sure!
Thank you for the update! Prayers up!
You are all on my mind and in my prayers continuously. – glad to see the update and praying for comfort,peace,and good answers and solutions for Sarah.
Watching….waiting…trusting…believing…with all of you. Kay
Anxiously and lovingly watching over this most precious girl from across the Atlantic. All our love and strength and hopes are for Sarah, her beloved mother and father, her Gage, and her family xxx
Becky, thank you so much for the update. It seems that Sarah is where she needs to be with her wonderful Doctor, as well as two of her favorite people. Gage sure sounds like a very compassionate soul, I am so happy he is there too. I am certain Steve will be there soon. Praying Sarah feels better soon and answers to the way forward. Sending love as well for all of you.
Cindy,
We would love for Steve to be here but we can only have two visitors so he couldn’t get in right now. He is definitely with us in spirit!
Thank you for the update, Becky. I know there have been many, many prayers offered up for all of you since we last heard from you.
May you all know God’s presence with you and His peace that passes all understanding.
He is risen!
Thank you for taking the time to update. I’ll be thinking of Sarah tomorrow as she undergoes all the procedures, and of you and Gage and Steve and everyone who loves this girl. ❤️
Continued prayers for all. Thankful to see some pics of Gage by her side, and knowing you are there with her too. And also to know she is getting the best of care so she can resume her Bride to be role!
Continued prayers for all of you…how comforting to know Dr. Driscoll is keeping such a close eye on coordinating Sarah’s care. I hope she is able to continue to rest and that you can also. Prayers that y’all are able to get answers from all her procedures and a clear plan moving forward. Sending love and hugs from Texas.
Oh my. Waited all day anxiously for this update. Now will be waiting anxiously for the next one.
Loved the picture of her and Dr. Driscoll.
You are all in our prayers.
Buff
Glad you were able to get a nap. I know you don’t get a lot of sleep when you stay with a hospital patient.
Busy day tomorrow! Praying for all of you and also that they can quickly come up with a treatment plan.
Prayers continue. Thanks for the update. Prayers for a restful day today and ease of tests and answers tomorrow.