Journal

Journal entry by Rachel Barkley

Sometimes recovery feels like watching grass grow. You don't feel like you're making much progress day-to-day, then one day you look out the window and the grass is knee-high! That is how this week felt.

Last week, we attended the ordination ceremony of our dear friend, and the church service was intimate and inspiring. At the end, pastors and friends spontaneously gathered around to pray for my healing. I felt so encouraged by what God was doing that night and a confidence that I will be healed. Now I don't know what kind of healing, the timing of my healing, or even on what side of heaven I will be healed. Just that our God is the healer.

The spiritual boost led to a physical boost! My dad visited and got to come cheer me on in therapy, and he got to witness big steps. When I left inpatient therapy at Magee almost two months ago, I couldn't really step my right leg at all without assistance. On Monday, I walked with the assistance of parallel bars and no aid on my legs. You can watch the video here on Facebook.

We also tried something new in therapy-- the exoskeleton. It is basically a robot suit that walks my legs at a more normal speed and gait. Going through this motion helped my legs remember what they're supposed to do, and I stepped faster when I tried walking with a walker afterwards.

Then, at therapy on Wednesday, I had a big breakthrough! I walked almost 100 feet using a walker!! This was a feat I thought would take months to achieve. 

Please pray that my nerves continue to regenerate, that signals get through my spinal cord, that I regain strength and don't lose too much muscle tone in my legs, and that I continue to regain core strength so that my balance improves.
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Journal entry by Grace Hayes

From Taylor and Rachel:

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Thank you so much for helping us meet our fundraising goal! Thanks to you we aren’t worried about paying for medical bills or the accessibility of our house. See our new door and ramp in the background of our picture, all made possible by YOU! We both felt like each goal was such a stretch and then you all kept blowing by them. Your gifts are tangible examples of God’s generosity. Overflowing. Whenever your gifts come to mind, it is an incredible encouragement. They pick us up.
 
You helped us: 
  • Install a ramp into the basement
  • Install a new door into the basement
  • Make the basement bathroom completely accessible
  • Widen all the basement doorways
  • Insulate the wall of the room that’s now the nursery
  • Get an accessible crib
  • Install a stair lift
  • Modify the staircase and landings for the stair lift
  • Buy a wheel chair and other medical equipment
  • Pay medical bills
  • Pay for meals and housing while in the hospital
  • Acquire a bike for Rachel to use at home so she can exercise her legs
And you’ve given in time and meals too! Truly, as we’ve said before, we are blown away and overwhelmed by your generosity. You’ve shown us what it means and looks like to help others. We’ll take these lessons and use them the rest of our lives. Thank you!

Journal entry by Rachel Barkley

Yesterday, Taylor and I went to Johns Hopkins to visit the great Dr. Sciubba for my first follow up since leaving Baltimore. It has been 4 months since he resected the tumor, and I've been dealing with fears that it would come back. In my anxious mind, the tumor felt like the monster from Stranger Things-- they think they killed it in Season 1, but they fear it is coming back from the Upside Down in Season 2 and 3. But in happy news, the MRI was all clear! I came home with the doxology playing in my head. "Praise God from whom all blessings flow."

Dr. Sciubba also was pleasantly surprised by my progress. When he saw my right leg's movement, he said he did not expect this until at least 8 months out based on how I left the hospital. It is a good sign of recovery! 

Last week I started an intensive day rehab program at National Rehab Hospital in NW DC. I do three hours of therapy for 2-3 days a week, and will be in it for 6 months to 1 year. I already feel stronger since leaving Magee almost a month ago.

For the days I don't have therapy, we ordered a FES stim bike that will allow me to exercise. This is  important to keep my muscles from atrophying and preventing spasms in my legs. The stimulation will hopefully help my brain connect to my muscles as well. We are hoping that insurance covers this, as it is a large cost.

I am so thankful for the help we've received from our moms and our friends that allow me to focus on therapy at this critical time. It is a full-time job and we couldn't do it without you!

Oh-- and our sweet Hudson Taylor is 5 months old!! Time really does fly.

Journal entry by Laurie Kopec

I have been by Rachel's side since she gave birth, save the week right after birth.  I am leaving tomorrow for the first time since all this started.  God has given me a window to be with her family and I can't believe what a blessing it has been to me.  I get to snuggle with Hudson every day and chat with Rachel and Taylor and be part of their lives.  I never thought I would be such an integral part of their lives again.  Yes, the schedule is grueling, and yes I work hard every day but I would not want to trade this time for anything.  I laugh to myself when they are tired and the baby's been screaming, I'll ask, do you need a break?  They hand Hudson over and even though I am tired, I get to play and hug him for as long as I'm allowed.  If I went home today, I could not have a better gift than this time spent.  The things that used to be important to me just aren't any more.  There will be a time again when I can focus on 'me'.  Next week I will paint at a workshop all week and love every minute, but I will miss them.  If I made Rachel's life a little easier then this time has been worthwhile.  

Journal entry by Rachel Barkley

We’ve been home just over two weeks now and have started to figure out our new rhythms. 

 

Today was my last day of in-home therapy, and I had a big win on Wednesday. This physical therapist really challenged me to push myself, and I took two big steps with my right leg using a walker! This was the most I’ve seen out of my right leg. 

 

My therapist kept telling me to stop being afraid and just do it. Recently, a Barkley family friend also gave me a word from the Lord that I need to reject a spirit fear: “For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” 2 Timothy 1:7

I realized that during most of my therapy sessions I am almost always consumed by a fear of falling. I won’t walk again if I’m afraid to even take a step!

 

Another fear I’ve had is my follow-up MRI. Both of actually getting the MRI, since the last time was under traumatic circumstances, and of seeing the results. I had got the MRI on Wednesday and didn’t experience any anxiety while in it! Please pray that the results show that the tumor is still defeated. 

 

On Monday I’ll start a day rehab program at National Rehab Hospital here in DC. It will be more intense, and I’m excited to get back at it and work hard. 

 

There have been lots of frustrations along the way at home. Every day things like transportation and getting my pants on are just more difficult now. And sometimes I get discouraged that I don’t get a break from the relentlessness of the everyday. 

 

But there are some darn beautiful things in the everyday, too. Hudson’s precious smile when he wakes up in the morning. Taylor’s kiss when he gets home from work. Walks with Nana to the park. Cooking in my kitchen. 

 

Thanks for praying and loving on us since we’ve been home. We’ve especially loved all the meal deliveries! 

Journal entry by Rachel Barkley

I'm writing this from Capitol Hill! On June 11, we went to the emergency room thinking we'd back in a day or two. I couldn't have imagined that it would be 106 days until I was back home. Obviously, this isn't how I expected to spend my first summer of my 30s and as a mom.

Leaving Magee was bittersweet. The nurses, techs, therapists, doctors and staff had become friends and cheerleaders by the end. Not to mention the security of living in a hospital should anything go wrong. It is also the place where I saw my first toe wiggle, kicked my leg, held Hudson above my head, and stood up. I will miss the Magee miracle workers! The next steps in therapy are in-home for a few weeks and then outpatient three days per week in DC.

Taylor and I hopped in a wheelchair van on Wednesday, and my family and friend Kala packed up Hudson and our things and drove home. We pulled into the back alley and I wheeled out to the new entrance in the basement... and started sobbing with happiness immediately. It was also the first time I got to see the gorgeous newly renovated bathroom (thanks to your donations that made it possible!). The guys worked hard and proved that accessible accommodations can also be pretty. 

The first night back with my guys sleeping under the same roof was so wonderful. You don't know how great being woken up by your baby's cries is until you've spent 106 nights away-- although, Hud is an exceptional sleeper thanks to Grammy Ann's training.

In the midst of the joy, I also have experienced some mourning and some fears. On our first "walk" to the park, I mourned my many runs there. Back in our house, I mourned not being able to get upstairs. I am mourning not being able to pop out of bed and make my family breakfast. But I know all of this will get better with time as I learn how to operate and I gain back more mobility. I fear being a burden to everyone I love (although I know they would never ever say that!), and I fear the tumor or other health complications coming back. It is a daily exercise in "Casting my cares upon Jesus, because he cares for me." 1 Peter 5:7 

We are holding onto hope that God will provide healing. And in this journey I take heart that one day all our physical suffering-- all wheelchairs and tumors-- will be checked at heaven's gate when we are all ultimately whole and healed!

This whole transition and next phase are made possible by my amazing family. You all know that Taylor is an incredible man and I am most blessed to be his wife. My mom is living with us for a time to help with me and Hudson. She's super mom and I look forward to this sweet time as moms together. My dad and brother came and helped with the move- including building me a new closet in the basement! Ann helped prepare and clean our house for the big return. 

Lastly, thank you from the bottom of my heart to our community of support! The team of friends who helped move furniture, stock the house with food and flowers, are bringing us meals, and have donated more than $60,000!! You all are cherished and your generosity blows our minds.

Thank you, thank you, thank you!! 

Journal entry by Grace Hayes

Hi all — Hannah Wegmann has set up a meal train plan via Take Them A Meal. A note from Hannah:

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As the Barkley family adjusts to life, not only with a baby but with Rachel's ongoing recovery process, we want to shower them with meals and support.

Please text Rachel to coordinate delivery (352-362-2091).

From September 25-29, meals should be for 5 adults.
Meals after September 25 will be for 3 adults.

If you can't bring a meal, consider sending UberEats via Taylor's email: tbark11@gmail.com

Let's keep the Barkley's covered in meals and prayer!
-Hannah

Sign up for a meal delivery here: https://takethemameal.com/meals.php?t=UEKU1492&v=72b20cda81 />
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Journal entry by Taylor Barkley

We have received our discharge date and are moving back home September 25! This is both very exciting and a little scary. When we left for the ER on June 11, we thought it would be for an afternoon, and then maybe a night, but certainly no more than two nights! It turns out that spinal cord tumors ruin plans. Rachel hasn’t been home since then. With the accessibility modifications, our home will be ready for her (thanks to your generous donations!). The three of us will also be able to sleep under the same roof for the first time since June 11. We’ve only had one night since then where we’ve been able to all be together overnight. It will be great to be back in our home. That’s the exciting stuff. The scary stuff is being out of a hospital. We’ve gotten used to and needed the help from doctors, nurses, and all the other medical professionals. Although Magee has been great at equipping Rachel, me, and our families with the requisite skills to live at home. It will still be new. 

When we feel a little nervous about moving home we think back on how each new chapter of this summer’s journey has had the same feeling of excitement and trepidation. But each time, while there’s been a short adjustment period, it has always been for the best. We were scared to go to the ER but so glad we did. We were confident yet scared to go to Hopkins for surgery, to a new team and hospital we’d never seen, but so glad we did. We were excited yet scared to go to rehab but so glad we did. Each time, and in different ways, God has led us and prepared the way. We feel similarly about about going home—although of course the circumstances are very different than those hospital transfers. It truly is amazing that Rachel has all the abilities she has by this point, only three months since her surgery! We give thanks.

Speaking of giving thanks...Thank YOU for helping us reach $60,000 on the GoFundMe campaign! Many of you have also sent checks and other gifts. You are carrying us along. I told a friend the other day that thanks to you all, money worries are item number 100 on the things I have to worry about. I know that money could easily have been in my top 3 worries. Thank you for helping bear that load.

Finally, a local Philadelphia ABC station came by to do a short story about Rachel’s recovery. If you haven’t seen it, check it out here.



Journal entry by Taylor Barkley

Today Rachel stood up from her wheelchair with help from only one therapist! She then stood up with minimal help from one therapist and while they were spotting her, stood on her own with a walker! This week she also regained the ability to bend and lift her right knee off the bed. Electrical stimulation therapy has been a big help reactivating her muscles. Big steps. She says a month ago she thought these movements would be impossible. 

We’ve also been fortunate to have some folks tell our story. 

Magee Rehabilitation Hospital highlighted Rachel’s recovery in a great video here.

The DC CBS affiliate came up to highlight Rachel’s recovery too! A short article and the clip are available here

Journal entry by Taylor Barkley

Rachel continues to make great progress every day. She spends a few minutes standing and even walking each day now with the help of a machine, harness, therapists, a table, a walker or some combination of those things. It’s hard work but paying off! We all are also working with the therapists to help her with daily routines. One big skill is the transfer: transfer from bed to wheelchair and back, to car seat and back, etc. Each time I see Rachel do it she gets stronger and better. It’s a lot to get used to but she is excelling, building incrementally each day.

Speaking of incremental gains, our experiences hiking and marathon running (Rachel has exclusive claim to that last one) have consistently come to mind this summer. When the switchbacks or mile markers feel impossibly far from each other and the pace seems glacial, it helps to look back and see how far we’ve traveled. That’s always a boost. It also helps to just focus on the next marker whether it’s that next spot of shade 25 feet away or that next fence post. And then to focus on the next one after that. Each foot forward is progress. At some point the finishline arrives as well as the memories of the course traveled. It has been much the same throughout this spinal cord tumor recovery. 

It has also been a help to think of the trudging throughout the Bible. Two of many examples are when Elijah walked 40 days after his out-of-this-world Mount Carmel experience and then suicidal depression or the man who left his mortally sick daughter and walked a day and a half each way to find Jesus on faith his daughter would be healed. They’re short sentences but long times in their circumstances. Additionally there’s no noted word from God during those periods of trudging. Only at the end of each journey is the story complete. What was going through these guys’ minds as they walked in apparent silence to some unknown end with God? What were their mile markers? It helps to sit in those moments a while. 

Tonight Rachel and I spent some time marveling at how far we’ve come from those days in the Virginia hospital and are so grateful for the many blessings we’ve received along the way. Each day feels like another step forward.

Journal entry by Taylor Barkley

We had our healthy baby boy, Hudson, on May 21. He’s gaining weight well and strong!

During the third trimester, Rachel experienced a bit of wobble and weakness in her right leg. Common during pregnancy! For three years prior she had terrible neck/shoulder pain that was relieved about a year ago by chiropractic and physical therapy. Then during pushing to get Hudson into this world, her neck and shoulder pain returned full force. Her right leg was also weak and didn’t seem to be getting better. But again we and doctors chalked this up to pregnancy side effects.

It wasn’t until Tuesday morning June 11 we decided to take Rachel to the ER because she had lost 90% of the movement and strength in her right leg. For her leg there has never been any pain or numbness and full feeling remains. She just couldn’t move it. She had a couple other weird symptoms as well. The doctors in the ER and hospital treated these symptoms seriously, ordering a CT scan and a lower back MRI. Both came back clear. A brain MRI was ordered to rule other causes out. Due to her neck and shoulder pain and a prior doctor’s recommendation we requested an upper spine MRI just to get at the cause of her pain. 

The results the next day were unexpected. A “lesion” was revealed in her upper spinal cord continuing down to the middle of her back. Another MRI had to be ordered to get the full picture but due to chemicals required for good imaging we had to wait 24 hours with this vague, scary news.

Today the neurosurgeon returned with a clearer picture of the road ahead. The tumor is unusually large, especially for a female her age. He thinks the tumor is either an ependymona or an astrocytomas. He won’t know for sure until Rachel’s spine is opened up for surgery. If it’s an ependymona then the extraction is relatively easier. If it’s an astrocytoma, they would take out less since that type tends to bond with the spinal cord tissue. Either way the surgery is extremely risky with a chance Rachel won’t regain strength in her legs. There’s even the possibility of paralysis. After the surgery there is a long road of physical therapy, potential chemotherapy and/or radiation treatment. 

It’s highly likely that Rachel will have surgery next week. We are consulting with other doctors and specialists in order to get the best care in the world for Rachel. 

We so appreciate the love and support from everyone. It truly is overwhelming, in a good way. e love the messages and emails event if we can’t respond. Just getting a text saying that you are thinking about us is encouraging. 

God walks with us. Family and friends walk with us. The story isn’t over, this is just a hard part.

We will slowly be adding ways to help out to the site. There’s a meal plan link in Ways to Help. Please email Grace Hayes if you would like to visit Rachel: gracemontgomeryhayes@gmail.com
Rachel’s Story

Site created on June 14, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.


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