Instagram story viewer> @grayforgrey7> Tagged

grayforgrey7

@grayforgrey7

undefined

POSTS STORIES REELS TAGGED

We brought this guy home on Friday evening. We’re in pain management mode right now while we wait for radiation to do its thing. Right now a good day has him at a 5/10 on a pain scale. The meds make him sleep quite a bit but that’s preferable to pain.

The tumor on his spine has left him bedridden and barely able to move. Early last week, while at the hospital, I texted @kelleycook1976 and told her we needed to move G’s room downstairs. She and I have had this plan in our back pocket, for months. I told her it was time. Ash, @reggitstlaw and she made it happen overnight. I’m telling you… our people are superheros. 🦸🏻‍♀️ 🦸🏻

Our team at @levinechildrens set us up with an in-home palliative care team that allows us 24-hour access to doctors and nurses by phone or in person. This is a huge, mental safety net for me as we navigate some “big” drugs.

My prayers at this point revolve around pain relief and that radiation eradicates the tumor on his spinal cord so that it can heal and he can regain mobility; that this new low is just a moment in time to get through.

We love you all and continue to be so grateful for your support and prayers.

#greyrocks #cancersucks

213

20

We chose to have Grey admitted to Levine again, this past Friday, in order to try to get his pain under control.

We met with Palliative Care on Friday, before his radiation treatment and they outlined a few options for pain management, at home or in-patient. Given the type of drugs they’re introducing, that they need to be up-titrated, that his BP and HR have been high, that we were rolling into a weekend and a few other factors, we opted to have him admitted.

His pain has been better the last 2 days, if he’s lying down. One of the goals for discharge is that we can make him comfortable when seated. We’re fighting tumor on his spinal cord that is causing extreme nerve pain. Being in-hospital though, has meant easier transfers (he literally stays lying down, in bed) to and from his radiation treatments.

We don’t have a discharge date but will evaluate his pain level daily. He will be discharged when we all feel it’s under control.

You guys remain the most loyal prayer warriors. Thank you. 🙏🏼

With Love,
The Gload Gang

#greyrocks #cancersucks #402prayers

104

20

Here we go again. This time photon radiation of his full spine. 10 treatments. He is being positioned for his first treatment as I write.

He is in excruciating pain all the time. The tumor is on his spinal cord causing horrible nerve pain in his neck, back, hips, butt and legs. He can’t sleep, prescribed, controlled meds aren’t helping.

He continues to lose strength and coordination; nearly unable to walk or even be upright.

We are at a loss. Nothing we do helps. It’s a horrible feeling as a parent.

#greyrocks #cancersucks #havefaith

196

46

Soooo many of you are praying for us. Thank you! We’ll take every one. I’d like to invite you to something more, if you’d like.

Last Tuesday, after a Zoom to pray together, for Greyson, my friend Vu hit on something powerful. She said, “This reminds me how powerful prayer can be… why don’t we all set an alarm each day to pray for Grey, at the same time?” Ironically, I already had a few timers set, pre-medical-chaos so I sent them a screen shot. And Vu said, “4:02 looks perfect to me!”

And so, “4:02 prayers” started.

If you’re so inclined, I’d like to invite anyone and everyone to join us. So many of you have asked how you can help and truly, the prayers for ALL the things are what we need most.

So, if you’d like to send something up for G or ANYONE, we’ll all be doing the same at 4:02 every day. 😊

Love you all. Thank you. 🙏🏼

And thanks to @nomadrwat for making the Zoom suggestion and to @goffintent for praying BIG for us all on that call.

#grayrocks #ᴄᴀɴᴄᴇʀsᴜᴄᴋs #402prayers

29

1

We got our boy home yesterday afternoon. He’s happier here, in his own bed, with his dogs and of course he’s smiling but truthfully, he’s in a great deal of pain, head to toe. The tumor in his spine is causing enough pain that he has trouble moving around and sitting up and has preferred to stay in bed instead. When he does have to get up, he is experiencing further weakness, coordination and balance issues. It is also affecting his BP and causing stomach and gastric issues. Meds chase meds as our team works nearly 24/7 to correct some of these issues. We are so grateful for a team who honestly loves him like family.

He will begin a new radiation protocol on Thursday 9/24. It should only be 10 treatments. It will be photon radiation instead of proton, which is what he had on the brain.

Thank you for all the continued love and prayers. We continue to need prayers most.

Here’s to better days! 🙏🏼

#greyrocks #cancersucks #godisgood

235

8

If you ever doubt there’s good in the world, come meet my people.

I have said two things for years now:
1) One of the silver linings to our situation is being constantly reminded how much we’re loved.
2) People are one of God’s biggest blessings.

These are just some of the tangible ways we’ve been loved this week. I’ve heard from DOZENS more of you offering your love, prayers and time in ANY way I can think of to let you help. I promise, I will ask if I think of something.

Please keep the prayers coming. We will take them, we feel them and are so grateful for them.

#grayforgrey #bellebelle #blessings

72

5

We have the news we didn’t want to hear and good news: Greyson’s tumor has spread to his spinal cord and they think radiation can eradicate it.

Grey has had acute neck + face pain for months. It started low, while he was in the hospital this summer and has gradually increased. He’s been unable to move or sleep, the pain sometimes so severe it makes him vomit. A low dose of Oxy was prescribed to help him sleep but his dose quickly increased to help with pain. Of course, that’s a concern in and of itself. An MRI showed a nerve in his face was irritated. A new med was prescribed but has to be introduced slowly.

In the meantime, he started to complain of lower back, hip + leg pain. We thought this might be tightness from 7 months of immobility (he is not walking yet). By Monday however, add’l symptoms had our team sending us to the ED. This is where the metastasis was caught; tumor was seen to be on his spinal cord. We were also told he had add’l fluid on the brain despite his shunt.

Ross was with him at the hospital and was told, in the middle of the night, by a neuro surgeon we don’t know, that G had an alarming amount of fluid on the brain and they thought the tumor was in his spine. That was it. He called me at 4:30 am. I woke Belle (she’s only 15- I forget sometimes bc she’s so mature), broke the news to her, sobbed in her arms and left her (her choice) to go to school and practice on her own, so I could be at the hospital when the doctors rounded, to give us more info.

I must have felt fear like this when he was first diagnoses but I don’t remember it.

We easily saw a dozen MDs + specialists yesterday- oncology, neuro, urology, radiation oncology, nephrology was consulted, palliative care, PT, OT… he had an Xray, a CT and this am, a radiation sim to prepare him for this next round. Each doctor though, gave us the best news possible including the miracle that they thought radiation would get rid of the spinal tumor.

The plan is to start late next week. It will only be 10 days.

Please say prayers for him. He has had a hard time mentally and physically. Thank you, as always. We love you all.

#greyrocks #ᴄᴀɴᴄᴇʀsᴜ�

290

125

Grey finished his radiation treatments today! 🎉

There’s a drum you can beat but he didn’t want the attention so he wore a sombrero on the way in and out instead because… why wouldn’t you?The staff, who he’s seen every day for 6 weeks (minus weekends), quietly acknowledged him and gave him a little gift. We celebrated with donuts on the way home. 🍩

We are so lucky to have this facility in Charlotte! Before it was built (2 years ago), our local kiddos most often went to Florida, Atlanta or TN for treatment. While I don’t envy those of you who have to make the commute to uptown everyday, I was so thankful that’s all it was for us!

Everyone has asked how he is. He’s pretty good. I won’t sugar-coat it and say he’s perfect, he’s not. He’s exhausted every day, nauseous most, has lost hair in a weird pattern and wasn’t allowed to get a haircut until after treatment ended because the mask he wore to keep his head in place (the bright green thing in one of the clips) was so tight a haircut could affect it (it literally left waffle print on his face). He started school at home and is still in need of help to stand and walk (we tabled further PT until after this ended). He has had nearly continuous neck pain and headaches for the last 2 months. And while he tries to be his usual roll-with-it, joking self, he has some frustration and anger that he’s fighting too. Rightfully so.

They say he could feel worse over the next 4-6 weeks. We will take it day by day.

He will have an MRI on 9/22 to assess the effectiveness of the radiation. Our hope is that this tumor “sleeps” for a decade or more.

He’s asleep on the couch now and that’s where I’ll leave him. Rest and healing are priority one.

Thank you, once again, to all of you who have stuck with us through this.

We’ll keep you posted.

#grayforgrey #greyrocks #protonradiation #braintumorawareness

135

10

This boy is having his first radiation treatment as I type. 9 am, 7/8. Then a follow-up with his oncologist, then HOME after 5 weeks in-patient! 🏡 🐶 🐈 🛌 🩶

The treatment schedule is rigorous: M-F for 6 weeks. We don’t yet know how it will affect him but his team is hopeful that because so much tumor was removed during this last surgery, if radiation does irritate the tumor and cause swelling, there will be room enough in his brain that his motor function side effects will be minimal.

Please pray for successful treatments; that this tumor will be put to rest for a decade or more. That Grey’s symptoms and side effects will be minimal and he will be able to be himself in spirit and function. Please ask for protection of his mind, physically and mentally; that his is not impacted cognitively, in character or spirit. Please pray his worries and fears for short and long-term effects and are wiped away. Please pray for the doctors who have designed this plan and the nurses and techs who deliver it and all who care for him.

Thank you! Love to you all!

#grayforgrey

157

17

This week at Camp Levine:

The work continues! Grey is determined to walk out of here on his own. In order to take advantage of every minute, they’ve moved his discharge date back from 7/2 to 7/8, which is the same day he starts radiation. His one request was a day pass for our n’hood 4th party, which has been approved. 🇺🇸 😊

Because radiation can actually initially cause inflammation of the tumor and therefore exacerbate the motor function symptoms, he wants to have made max progress here. He also recognizes that continuing out-patient therapies during radiation could be challenging both physically and from a scheduling standpoint; radiation is M-F for 6 weeks.

Watching Grey work makes me so proud! It also makes me realize the minute-to-minute movements we take for granted. The mental and physical energy he expends is incredible but the progress is there! 💪🏼

Even better, the boy we know and love has come back. Between the meds, tumor growth and stroke he had become very “flat”, frustrated and even slightly short-tempered. He slept 15-20 hours/day. I’ve never been so happy to hear dry wit and sarcasm in my life. 😊

He has tapered off of the massive dose of steroids he’s been on for months. His sleep is improving, he’s not painfully hungry all the time, his body temp is regulating and slowly, his acne is clearing.

He’s also still working to finish school. ✏️

In the meantime he met Malik Mustapha of the 49ers who was generously visiting kids at Levine’s and got some time with two of my besties, @msiggy and @ashlef13 who were in town to help me and make me smile. 😊

All in all, he and we, are great! Thank you for the continued love, prayers, meals, gift cards, words of encouragement, rides for Belle, last-minute and long-term (my parents! 💪🏼) pet-sitting. And THANK YOU to our immense team of doctors, nurses, therapists, food and nutrition crew, cleaning staff, etc at Levine! This hospital is a tremendous resource in our backyard. There are literally kids on this floor from states away.

Keep sending pics of your Team Grey gear!
👕 🧢

Here’s to another week! 🙏🏼 🧠 💪🏼

#grayforgrey #teamgrey

159

12

Still working and making gains! It doesn’t hurt to have a few therapy dogs on hand. 😃 🐶

#grayforgrey #greyrocks #teamgrey #levineschildrenshospital

137

3

LAST DAY TODAY! Midnight today, Friday May 29th is your last chance to order tees and hats to support brain tumor research. 🔬🧠

Friends… we are still in it. We have some big decisions coming in the next few days. The options aren’t sunshine and roses. Some are just slightly less horrible, dangerous or damaging than others. It’s amazing how priorities get base-lined very quickly and the other stuff… just doesn’t matter.

I am simultaneously on-my-knees grateful for the options that have kept my son alive and relatively healthy these last 10 years and wanting-to-break-things, wanting-to-scream, quietly resigned to the fact that there aren’t better options. We just put humans on the far side of the moon. How have we not figured this out? I have theories but that’s a rabbit hole for another time.

The point is to do our best and do our part; to leave this world a better place than we found it. And you guys have taken up our cause with guns blazing this year!! It’s humbling because, let’s face it- there are a million causes out there and a million hands outstretched asking for your money.

As of the now,
WE HAVE RAISED OVER 💲7️⃣9️⃣0️⃣0️⃣‼️
That is over twice what is typical for us!

Thank you!! Thank you!! Thank you!!

Your support this last decade HAS meant advances and better options and we’ve benefited. Even if we haven’t “solved” brain tumors yet, I have to believe the solution is coming and you’ve helped fuel that! Without question, someone you love or their loved ones will benefit from your generosity.

If you haven’t yet bought your tees or hats and would like to, you may use the link in our IG bios or in the comments on FB. You may also just donate. Thank you again, for all your love and support. Please keep it coming. We still need it.

With Love,
#TeamGrey

#braintumorawareness #nationalbraintumorsociety #grayforgrey

109

2