Journal

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

Rachel and I want to quickly say how thankful we are for all your donations during this second phase. These funds have allowed us to break ground on the house renovations which are going ahead at full speed with a completion date projected before Rachel’s arrival at home. Therapists all say Rachel is making great progress and will likely return home mid to late September. 

Rachel and I often use the word “overwhelmed” when we are in fact not overwhelmed. I guess we are just whelmed? But in this case we are actually overwhelmed every time a Venmo donation comes through, a check comes in the mail, or we visit the GoFundMe and see what you all have given. It is truly too much to handle at times. We often look at each other and say, “How are we going to thank everyone adequately?” That is also overwhelming because it’s probably not possible. Hopefully it can be in person with all of you. For now, here, we can write “thank you.”

And here are some photos of Hudson lately! 

Journal entry by Laurie Kopec

It has been a while since I have posted.  We still have hard moments and I know Rachel thinks through what her life will look like for a while and she gets down, but she seems more hopeful most days.  She is making strides every day when her legs gain movement and her right hand is starting to work better.  I have learned how to help her dress in the morning and she is patient with me as I learn.  I know she wishes she didn't have to have me help her, but it is not a burden to help her and be there for her.  I also watch Hudson while she is in Physical therapy and we sometimes watch her work.  He is such a ray of sunshine and easy to love.  He is three months now and is starting to recognize us and smiles, laughs and coos for mommy.  When he cries now she has stays calm and is able to bounce him to put him to sleep.  I know being able to cuddle him is the best medicine for her.  The staff has fallen in love with both of them and they all say good morning to Hudson as we wheel though the halls.  Rachel's nurses are very protective and supportive of her while she learns such hard things that will help her when she leaves.  Taylor is as always her steady rock and goes to work a couple days a week and is bonding with Hudson who loves being way up high on daddy's shoulder.  Ann is still helping at night and is so thankful he is starting to sleep almost though the night!  We love all your cards, flowers and financial gifts and cherish all of your prayers and sweet comments.  Because of them, Rachel and all of us do not feel forgotten as the days go by, but loved and am still amazed at the outpouring of your love and sacrifices you have made for us.  Thank you again and again!

Journal entry by Grace Hayes

Hi all, we just want to make sure everyone has the correct link to donate to Taylor & Rachel.

If you would like to donate directly to Taylor & Rachel, please donate via GoFundMe: gofundme.com/f/rachel-barkley-recovery

You can also donate to the family by sending Taylor a Venmo (@Tbarkley) or mailing them a check.

Donations made via the CaringBridge page (on the Tributes tab or elsewhere on this site) DO NOT go to Taylor & Rachel, but rather go to support the CaringBridge nonprofit platform.

If you have previously donated via this CaringBridge page and your intent was for the money to go to Taylor & Rachel, not to CaringBridge (the not-for-profit platform), you can call the customer service number (651-789-2300) and request a refund.

Journal entry by Grace Hayes

UPDATE: Thank you all for the incredible outpouring of love, prayer, and financial support for the Barkley family as Rachel recovers from a rare spinal cord tumor and surgery to remove it.

Rachel is now approaching the second phase of her recovery: transitioning back home. With the expenses and challenges of this next phase becoming clear, we are launching Phase Two of our GoFundMe campaign with a new goal of $67,000.

As those of you who have followed these CaringBridge updates know, Rachel has spent the last five weeks at an acute spinal care injury rehab hospital in Philadelphia. She’s made tremendous progress regaining mobility in her arms, core, and (both!) legs, but she still faces many challenges on the road to full recovery and independence.

Discharge is planned for early September, and Rachel is expected to need a wheelchair for the immediate future. This means the Barkley's beautiful home on Capitol Hill will need some major modifications to make it accessible and functional for their family, including:
--Moving the master suite from the third level to the basement level
--Enlarging doorways and adding a basement-level entrance/exit
--Creating an accessible bathroom
--Handling potentially major drainage remediation in order to build the basement-level entrance/exit
[Expected total: $30,000]

Rachel will also need equipment and specialized care to continue in-home occupational and physical therapy:
--Either a stairway lift or external elevator to allow her to access the main level:
[Expected total: $13,000]
--A manual wheelchair to get her to and from doctor’s appointments (insurance only covers one chair, the power wheelchair she’ll use in-home) and other rehab equipment that her doctors will determine closer to discharge:
[Expected total: $2,000]
--A hospital bed for easy dressing and care:
[Expected total: $2,000]
Fees for in-home therapists for several months, possibly longer:
[Expected total: $3,000]
--Transportation cost via rented or hired accessible vans:
[Expected total: $2,000]

Meanwhile, medical bills will continue to accrue in the months ahead, including a $15,000 out-of-pocket bill to cover Rachel’s time in rehab.

Some of these estimates are what Rachel and Taylor will need to pay after insurance covers up to 75% of the total cost.

Reaching our new goal of $67,000 will make the Barkley's return home as quick and smooth as possible, and ensure that Rachel can continue her miraculous recovery without interruption.

Your generosity has already given this campaign a huge jump-start, and the entire Kopec / Barkley family is unspeakably grateful for the support you’ve shown through this trying time. Now is our chance to step up once again to bring Rachel, Taylor, and baby Hudson home and support them as they move forward.

You can make your donation here.

Thank you!!

Journal entry by Taylor Barkley

During therapy on Friday while Rachel was being transferred to her wheel chair, the therapist felt a muscle move a bit in the quad of her right leg. So after Rachel was settled in her chair, the therapist asked her to try and kick her right leg up. This is something she has been able to do with her left leg but has been completely unable to do with her right leg since June 10, before we took her to the ER. Although she had tried kicking her right leg countless times over the last two months to no avail, Rachel gave it a try this time and it kicked! There were cheers, tears, and celebrating. Rachel said she immediately started sobbing. Rachel’s dad was there to see it too and she’s been able to show everyone since. The photo is from a video her dad recorded shortly after the first kick.

This was a huge milestone and we’ve given thanks for it ever since. The fact that nerve signal and movement have been returning in pieces since the surgery is bucking the expectations of the doctors. While we all hoped movement would be restored in her right leg it was neither a guarantee nor expected this soon. We give thanks to God!

Journal entry by Taylor Barkley

Thanks for everyone’s continued prayers and support! We’ve hit somewhat of a rhythm here where we buckle down and work for small gains each day. Fear not! We will update this page as often as we can!

To give you an idea of the buckling down, Rachel starts her day with doctor and nurse check-ins at 6 AM, has breakfast, and then spends time with Hudson. About 8:30 or 9 AM nurses help Rachel get dressed and lifted into her wheel chair with an overhead sling system which looks really fun. She says it’s like being in a Peter Pan production. About 10:30 she starts with occupational therapy which means learning daily activities and specially strengthening her arms and hands. The other day I saw her use both arms and hands putting her hair in a pony tail! Two weeks ago that was an impossible feat and unimaginable when she was just out of surgery. Lunch break at 12 when we all gather as a family to eat in her room. We put Hudson on a play mat and the rest of us eat something purchased via your generously donated funds or Uber Eats gift cards. Around 1:30 PM Rachel goes off to physical therapy where the focus is typically her leg and mobility functions. For a cool video of her physical therapy check out this link. There are many different exercises and stretches she works on too! After an hour and a half of PT she might take a class to learn more about spinal cord injury, music therapy, talk to a psychologist, cuddle Hudson, or nap! We then will sometimes gather again for dinner or Rachel and I will spend an evening together while the grandparents take Hudson. The bedtime routine can take a while and involves nurses helping her get dressed for bed, shower, and out of the wheel chair. They are busy and full days. The weekends usually have one therapy session, one day that’s completely free, and visitors. But because the weeks are so busy, the restful weekends feel very welcome!

About three weeks ago I started going back to work, splitting time between DC and Philadelphia. Thanks to a very understanding employer I am able to work remotely while in Philadelphia. I also participate in many of the OT and PT sessions to build up my own knowledge and practice caregiving skills. 

Some notable medical things: It often gets lost in the mix when we tell folks about the surgery, but in addition to having the tumor extracted from her spinal cord she also had two titanium rods screwed into 7 or 8 vertebrae, fusing them together. They are to prevent head drop or scoliosis later in life. It turns out that cutting through vertebrae weakens them. See photo for more detail. We’ve also learned that Rachel is medically classified as an incomplete quadriplegic. This means her spinal cord was not completely severed and that her tumor/surgery affected her legs and arms. 

Doctors here are anticipating a discharge at the end of August or early September so we are thinking about what that means and planning accordingly. Old DC houses were not made for wheel chairs so we are remodeling the basement to make it our living space with hopes of installing a lift of some sort for Rachel to get to the main floor. 

We take hope from all the positive progress, all your kinds words and prayer, and doctor’s expectations that Rachel will someday regain normal function and feeling! 

Psalm 61:2 “From the end of the earth I call to You when my heart is faint. Lead me to the rock that is higher than I.”

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.


If you would like to donate directly to Taylor & Rachel, please donate via GoFundMe (https://www.gofundme.com/f/rachel-barkley-recovery). Donations made via this CaringBridge site DO NOT go to Taylor & Rachel, but rather go to support the CaringBridge nonprofit platform.


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