Three weeks of radiation down. Two and change to go.
Every day felt like Friday. It’s funny how every day has a certain “feel” to it. All the days felt like Friday. Not the good kind of Friday feeling – where your work is about done and you get to start having fun. This was more like what Bilbo Baggins was talking about: “I feel all thin, sort of stretched…like butter that has been scraped over too much bread.”
All week, it seemed that tomorrow must finally be Saturday or Sunday. Oy. It makes for a rough Tuesday!
But that’s only my problem, and more an observation than a gripe. Because Alice is back. It’s so grand. Active, happy, playful old Alice. Essentially all her symptoms are gone. Eyes are back in line, she doesn’t teeter to the left when she walks, she’s not afraid of the stairs, and her right hand is no longer trembling. Barring a miracle, it’s temporary, but we’re enjoying the you-know-what out of it. As Pastor Ivan told me this week, we’re working to jam an entire lifetime of love and family into a condensed window of time.
I took some of the generosity given to us and picked up a rather inexpensive, 25-yr old Yamaha four-wheeler this week. Yay craigslist. Alice loves it; I knew she would. We go tooling around the hayfield in front of and behind the house. This afternoon we piled 7 of us on there… yes, 7. Alice, two sisters, three cousins, and me. Good clean fun. Tonight we went for a little ride in the dark while the snow was falling like crazy. I put some sunglasses on her since she sits in front of me and it’s hard to see with all that snow flying in the face and eyes. It was awesome.
Four weeks ago, Alice started on 12mg of steroids per day. She’s down to 1/2mg a day now. I can’t tell you how happy we are about that. No more endless obsession over food, and her cheeks which had grown so chubby she would come back from radiation with tracks in them from how tight her mask had become, are beginning to shrink down, if ever so slowly.
She had been going under sedation without adding an anti-nausea medication for the past couple of weeks. But today after leaving radiation, and just before walking into another appointment at another place, she vomited all over herself in the car. My wife, always on top of things and prepared for virtually any calamity, had a spare change of clothes, so crisis averted. It was only Cheerios anyway. And yay for leather seats in the Jetta.
About two hours later, rolling up the freeway, “I’m gonna frow up!” Shelly says, “Where’s that bucket I had in the backseat in case she got sick?” I say, “Oooooh, that’s why that was there. Ummm, sorry. I was cleaning out the car and…” By that time, she’d grabbed a cereal bowl, Alice vomited into it, and that was pretty much that. So I guess on Monday we’ll have to start using the extra meds with sedation. Bummer.
So far she hasn’t needed a transfusion. We’re happy about that too. But she’s getting closer, and it looks to me like we won’t be able to avoid it forever. Hemoglobin and platelets need to be at a certain level, and they have been safely above so far, but nudging downward this week. Bummer.
She has some hair beginning to fall out. We were warned it might happen, and it is. So far it’s minor, but it’s happening. There may be a band between her ears around the back of her head that loses hair, and that’s no fun.
I need to mention how incredible the entire staff at the hospital has been. I’d use the word “professional,” but that seems sterile. “Friendly” might not convey how talented they all are. And we remarked this week that somehow they make us feel like we’re the only ones there. Dr. Katie, Alice’s radiation therapy doctor, wrote her cell phone number on her business card the first day we met her and said, “Call me anytime. 2AM, whatever, if you need me just call.” Brad and Rob are our friends down in the radiation room, and they are so great, day in and out. Brad is a homeschool dad, who, like me, devotes a percentage of his income to late library fees. It’s good to have friends to share some of life’s smaller sorrows with!
The nurses have been incredible too. Amy, Suzy, Grace, Laura, and La’anna are Alice’s friends now, and they greet her every morning with a smile and a laugh, and somehow, even after 15 trips down to be put to sleep and radiated, she doesn’t mind going “to the Doctor’s house” at all. It’s part of her day, and she seems to rather enjoy it. The whole nursing staff waves goodbye to her every day now, and dear Amy wasn’t our assigned nurse this morning, but she stopped in just to visit with Alice and say hi. She’s wonderful. The anesthesiologists too have been amazingly kind, personable, and very gentle. Dave, Connie, Staci, Dr. Wendy and Dr. B., and the ever-smiling Dr. Elena and Martha give the morning some joy.
It’s perhaps a funny scene, Alice and I in her bed being wheeled from our prep room down to the radiation room, as she sits in my lap watching SpongeBob, (and once again laughing at it, as of this week!) and catching the doctors and nurses traveling along with us getting into the show too. It’s kind of our thing now, and makes the morning go by with at least some levity.
Shelly and I are hanging in there. We have our moments. I attended a family birthday party last weekend, and spent the first hour just sitting on the floor by myself, unable to eat, surrounded by family that I love very much, but mostly wanting to be alone. Shelly has the same kind of moments. They come and go. Mercifully, if I’m down, she’s up, and if she’s down, I’m up.
We went on our first date in weeks on Thursday night. It wasn’t easy to get out of the house, nor to leave Alice and Violet behind, but we needed and greatly enjoyed our time alone. I like to drive the truck when we go out together – it’s the only vehicle we have with a bench seat, and Shelly so graciously sits in the middle, yay me! We tried the new Mexican restaurant behind Casey’s in Cambridge. It was really good!
We talked and laughed, unburdened ourselves of other matters on our hearts besides cancer (oh how I wish the rest of life would just stop and let us deal with one crisis at a time!), and enjoyed each other’s company immensely. When we went to leave, we unsuccessfully tried to pay our bill, because someone else, we don’t know who, beat us to it! That’s never happened to us before, and it was so cool! I don’t understand it – typically when there’s a somewhat over-weight middle-aged guy making googley eyes at a beautiful young-looking blonde, responsible people call the cops, not buy them dinner, but hey, we’ll take it! So thanks so very much, whoever you are, you made our evening.
Someone very kindly gave us, among other things, some incredibly delicious New York Strip steaks. So this week Alice said, “I wanna have sticks for supper!” And “sticks” we had! She was tortured by having to spoil her perfect dinner with a few pieces of broccoli, and I think that only endeared her to me all the more!
We’ve been the recipient of so much kindness, and we are so thankful. To all our friends, our family, to complete strangers from all over the state and the nation who have taken time to write us, to send us gifts (and I think every teddy bear that’s come has had at least one turn going to the doctor’s house with Alice!), to reach out on the “go fund me” page, and the many many more who have lifted our little girl up to the throne of grace, we are so incredibly grateful. I often say these days, “We’ve never wanted to be prayed for so badly in our lives.” And it’s very true. We are still working through the emotional challenges of trusting in the love and mercy of a God who could fix this just the way we want it, when we want it, but hasn’t yet, and maybe won’t on this side of eternity. But trust Him we must, and as my dear Uncle Fred said, to my great comfort, “He will not abandon you now.” And He hasn’t. After all, to whom else can we turn? He has the words of eternal life.
As I sign off, I’ve mentioned before that we like to say Psalm 23 together as a family before bed. Alice memorized it months ago, but we think the tumor has made her unable to remember it, and she’s frustrated that she can’t remember it, then she gets rather irritated when we say it together, but she can’t join in. So we mostly just say it after she’s gone to sleep, or she pretends to sleep and just ignores us. That’s hard. But Shelly just told me that she said the whole thing this evening, complete with the little actions we have! How fun. These are joyous days, and we love them, and are squeezing all we can out of them.
top photo is Alice this week. She’s probably playing Minecraft on the X-Box, but the books in the background give the illusion that we are a serious-minded, studious family. Ha! All about the optics!
November 3, 2017 at 10:19 pm
Alice is so beautiful ❤️ We are glad she’s “back” and pray that it’s for a LONG time! May the Lord satisfy her with a long life and show her His salvation!
November 3, 2017 at 10:25 pm
Your writing draws me in to your story as if I’ve known you my whole life. Thank you for sharing. We in the University of Northwestern Choirs continue to pray for Alice and all of you.
November 4, 2017 at 6:27 am
Thank you for sharing Alice’s little “victories” from this week. Praise God! We continue to lift your family up to our Heavenly Father in prayer. May He always provide you with what you need to get through this journey.
November 4, 2017 at 10:12 am
“His mercies are new every morning.” Praying for all of you.
November 4, 2017 at 10:35 am
We are still praying for all of you and so thankful that the 3rd week of radiation is over for you now! Praising the Lord that your Alice is back now, and that you can all have moments of joy and laughter. Still praying for a miracle, and for God’s strength and grace. Love Chuck & Jennifer Hervin
November 4, 2017 at 1:21 pm
Oh how I love to read the updates on Alice,, you may not know this,, but you have ministered to me, through your tremendous trial with these posts. Your faith and trust in our Almighty God through the worst thing that can happen to a parent in my opinion are so encouraging to all who are going through trials , whatever they may be,, health,, which is my life long trial,, and other trials. Please know my heart and prayers are with you all daily,, by Gods glorious grace enabling me to pray and be a part of your family,, even though I have never met you and probably wont this side of heaven… Gods blessings and grace and mercies , (which are new every morning) be upon you each day. love and prayer Jamie
November 4, 2017 at 8:33 pm
With each passing week we see how God leads your family no matter the situation. We cannot even fathom a teeny, tiny bit of how you feel but we do know that your faithfulness shines bright. The expressions in your writings are so deep and honest. We continue to pray for strength and healing.
November 5, 2017 at 4:32 pm
Hallelujah for every amount of victory!!
Jesus made the darkness tremble
Jesus silenced fear
Jesus calmed the storm
Jesus our hope is found in you – with out hope we cannot have faith
Your name is life that cancer cannot deny
Your name Jesus is forever lifted high
Your name cannot be overcome
Jesus your name is stronger and lifted high over Alice and the whole Reed family!!!
~ Praise You Jesus
November 6, 2017 at 7:34 pm
Everyone please also check out the facebook page TeamAlice for benefit information. We will have a special surprise for Alice that day. Please come out to support Alice and her family on December 9th from 4-7 pm
November 7, 2017 at 9:44 am
Still praying God will heal her, miracles do happen
November 8, 2017 at 12:21 pm
Hi, I anticipate the next update of Alice, I love seeing how God answers prayers of everybody!! I also like to share what God puts on my heart to pray for.. I find it helpful sometimes when people share with me, sometimes it is like putting a puzzle together, God gives us all a piece to make the puzzle whole. And we would all love to see Alice whole again!!
By the authority that Christ gave us:
I curse the root of the cancer cells and cast out the spirit of cancer!
I command electrical and magnetic frequencies to come into harmony & balance.
I curse any prions and command them to dissolve & be absorbed by the body.
I command the body’s defense “killer” cells to multiply, attack, and destroy all cancer cells.
I command healing to any damaged tissues and organs and normal function be restored.
Also I call forth all ph levels in Alices body to be normal.
In Jesus name ~ let it be done ~ Amen!!
Praise you Jesus for your great & mighty works!!
November 8, 2017 at 12:28 pm
You may have heard of Bruce VanNatta – he has been on different TV programs from surviving being crushed under a semi truck. God miraculously healed his body. He is going to be at a local church Fri – Sun here is the website if you want to look it up, I encourage you to bring Alice if your able to… of course anybody is welcomed.
Bruce V. will be praying for healing & miracles, What God did for him – God can do for Alice!! here is the website: http://www.wordoflifemn.org/ there is a short testimony from him on this website also.
November 8, 2017 at 9:00 pm
Thank God! We pray for you.
November 9, 2017 at 4:44 pm
HI Reed Family,I just want to bless you ~ imagining ALL you are going thru…. I can see you still singing even when you are filled with anguish and pain, when it feels like there is no song in your heart. You are still fighting with HOPE and allowing yourself to be teachable. You made me think; you never know how strong you are until being strong is the only choice you have. You are Gods superhero’s in your daughters eyes & in the eyes of many others!!