Tuesday, November 26, 2019

PAID!

Guess what?!! The money for HSCT has officially been fully paid, thanks to all of you! And, I thought it was exciting yesterday, when I  scheduled my four MRIs needed before the treatment! 67 days until arrival! Yahoo!

My thyroid is now under control & feels so much better. Now, to get stronger! Watch out, Mexico! February 2nd, here I come!

Saturday, November 9, 2019

Tickets!

This wouldn't work before, but GUESS WHAT?! We bought our plane tickets for HSCT! Yahooey!

What Does My Neurologist Think of Me Getting HSCT?

Neurologists very rarely support a patient going out of country for HSCT. I know this. I mentally prepared myself for this fact. I even incorporated the cost of me having to pay for four different MRIs done out-of-pocket, into the HSCT goal. Boy, do I feel silly! I should know by now, that God is obviously making all of the different pieces for this treatment, just fall into place. ๐Ÿ™Œ

At the end of my routine appointment with my neurologist this week, I told her that I decided to definitely do HSCT. And I quote,  "So, you waited until the end of our appointment to drop this bomb." Gulp. To be fair, we had been consumed with talking about other health stuff.

After listening to me being unwilling to do a 4th round of Lemtrada (I don't think she liked that idea either), not wanting to fall into another MS free fall (which would happen without further treatment), identifying that there are no other options for me, & I will definitely get worse without it, her entire demeanor switched!

She wrote the MRI prescriptions without hesitation, even saying that she could argue with insurance for one of them they may not like. She wanted me to go in for a pre-HSCT evaluation, but then decided I can just email instead. She also wants to follow & support me after.

Seriously, I am SO very thankful! My neurologist really fights for whatever she believes in, which is fantastic... if you're on
the same side. I already knew she wasn't a fan of out-of-the country treatment, so wasn't entirely optimistic. But, I was prepared to stand my ground, because I KNOW without a doubt, that this is the next right step God wants me to take. I know this is definitely yet another door God just blew open... UBER EXCITING! ๐Ÿ™Œ

Friday, October 18, 2019

Butterfly


Did you know that your thyroid is shaped like a butterfly? I figured a butterfly was more interesting to look at, than a thyroid. ๐Ÿ˜

This thyroid thing had been kicking my tushky! It's why I've been so incognito lately. I'm sorry! So, I've learned that my thyroid is definitely way hyper... need to talk with the doc again to get a final diagnosis, but whatever. It is, what it is. ๐Ÿ˜€

I ended up hitting up the ER earlier this week, because my heart rate was so fast. However, they couldn't give me any medicine for it, because I also have low blood pressure. I've just always had that going on. Anyhow, I have a fantastic endocrinologist & am confident he will quickly get things figured out.

I told him that my goal is to have this all of this straightened out before HSCT in February! We've got plans, people! Planes to catch & wacky immune systems to smash! ๐Ÿ˜

One more thing, please pray for Marian & James! I met them in the waiting room at the hospital yesterday (before my first thyroid test). Whether or not I was happily driving in circles around their section is irrelevant. (You had to be there for context.) ๐Ÿ˜‚

Anyhow, Marian has back problems & is always on medication for the pain. And James... ohmigoodness, God crossed our path with James FIVE times over the last two days! THAT is definitely for a reason! Anyhow, he is homeless... & has problems with his knee. They would both really appreciate your prayer! :D

Tuesday, October 8, 2019

ThAnK-yOOOu!! ๐ŸŽ‰ And, a fundraiser?


Last week, we were at 58% of our goal. It was unbelievable, especially since we had made a jump from 34% the week before. Well folks, you've done it again... YOU DID IT!! 42% was reached in one week & WE'VE REACHED OUR GOAL!!! Can you even believe it?! YOU raised $65,000 in just over a month!

And, what makes this even more amazing, is that the age no big companies are involved in any of this! It is literally YOU, out of the generosity of your own hearts and allowing yourselves to be led by the Lord!

I am very fortunate to have amazing friends & family who have offered to contribute even more, if needed. My response has been.... & remains... Please give or not give, based on how the Lord is leading you. I definitely don't want to interfere with that at all!

So, this brings us back around to the title of this... A fundraiser?! If I were you, I would be wondering why in the world a fundraiser is  even being thought about at this point. I feel that it's only fair that only right that I explain.

Probably much like you, we never thought the funds would come in so quickly. We started planning for this from the beginning.

- So, why didn't we just cancel it?

We thought about it. However, there are still people who are wanting to also help & contribute through this fundraiser. Additionally, the will be other medical expenses, that were not included in the goal. Anything that would also be able to help with that, would be completely AmAAA-zing! ๐Ÿ˜€

More information about the fundraiser will be coming soon. It will be kicking off with a 5K Fun Run/Walk at 9a.m. on Saturday, October 26th at Potomac Heights Baptist Church (37 Glymount Rd., Indian Head,  MD). There is no set cost. Donations happily accepted. ๐Ÿƒ‍♂️

Saturday, September 28, 2019

So, this...


Can you even believe how amazing this fundraiser has been going?! We've reached 58% of our goal (almost $38,000), without any fundraisers.... just all of your awesomeness, in just 3 weeks! Wowzers! ๐Ÿ˜ฎ I promise you... it isn't because of me AT ALL! Let me tell you something...

I've known about HSCT for several years. However, I never thought it was for me... until about a month ago. God put it SO strongly on my heart that I was supposed to do this... don't delay, fundraise now, have treatment in February. How in the world did I get all that from God? I can't explain it. I'm used to it though. If it's happened to you, you know exactly what I'm talking about. If it hasn't, I pray that you can have the opportunity one day too!

Oh yeah, so back to that day... so, I knew I was supposed to go forward with things. I love Psalm 119:105, "Thy word is a lamp unto my feet and a light unto my path." You can only see as far as the light shines. If you want to know what is beyond that, you need to take a step forward. You don't know what's ahead... all you can do is take the next right step. I remember thinking and sharing some of this when I was getting ready to do my first round of Lemtrada three years ago. I firmly believe that the Lord directed me to do Lemtrada then, to prepare me for this now.

God has been confirming over & over again, that I'm supposed to do this. It is SO cool!  But, there's more. I am well aware that the Lord has given me a platform right now. I recognize that He has put me in the spotlight, so to speak. But, I 100% know that this is not about me in any way, shape, or form. This is all about Him... and you get a front row seat!  

I don't know what's going to happen in February. I know that there's a possibility that I could get worse. However, I know that this is what God wants me to do. So, I can step forward in confidence. He is going to be doing something through my story. Maybe it will be some kind of healing... that would be pretty awesome, but who knows? I then remind myself again, that nothing's guaranteed & that I could end up worse than I am now. And, if that happens, it is okay. I know that He wants to show everyone something through me, I just don't know the ending yet. And, that is definitely NOT because I'm amazing or anything (I'm certainly not), but because I'm willing to be used, no matter the "cost."

But, what I do know, is that all praise and glory and honor to Him always and no matter what! It doesn't have to be something that you or I consider to be good or happy or whatever. As long as it honors Him and brings Him glory, it's all good! ๐Ÿ˜€

/campaigns/rebeccas-hsct-adventure/
▪︎ https://www.gofundme.com/f/rebecca039s-hsct-adv
▪︎ PayPal:  rebeccashsctadventure@gmail.com 
▪︎ Mail: send message for address

Friday, September 27, 2019

Olรจ!

Did you know that we have been rocking a Pampered Chef fundraiser party for my HSCT? 30% of the $3,800 in sales will be going right in to the HSCT fund... so, this is already more than $1,000!! Can you even believe it? I am blown away... & am so thankful! If you would like to also get a 2-fer-1 (something for you, something for me), just place an order here: 
https://www.pamperedchef.com/party/rebeccatodd0908

Local peeps... lets send this party off in style! Please come to the PC home party at my horse, tomorrow, Saturday, at noon. (Message for address. ) Please come, even if you've already ordered! Just bring your appetite! Olรจ! ๐ŸŽ‰

Wednesday, September 25, 2019

SO COOL!!

The guy at the bank just prayed with us! He asked if he could pray for us, for the fundraiser & treatment! Make no mistake, folks! God is all over this! ๐Ÿ˜€ Whatever happens, it's all Him... all praise & glory & honor to Him, always & no matter what!

◇◇◇◇◇◇◇◇◇◇◇◇◇◇◇◇◇◇◇◇◇
"I know You're able, I know you can, 
Save through the fire with Your mighty hand, 
But even if you don't, my hope is You alone.

I know the sorrow, I know the hurt, 
Would all go away if you just said the word,
But even if you don't, my hope is You alone."

"Jesus, I will cling to you come what may."

"It is well, it is well with my soul."

~ Even If,  by Mercy Me (words aren't all in the right order. )

Monday, September 23, 2019

What is going through HSCT like?


I had another post written. Then, I read this [at the end]. Someone who started HSCT in Mexico last week, is very transparent about her experience. I am thankful.  It's easy to find the really good experiences. But, I want to know the good, bad & the ugly.

Reading this post was a timely reality check. I could see this being me. My neurologist refers to Lemtrada as Stem Cell Light. I was sick & extremely weak on the first day of each round. I'm pretty much counting on getting sick. Does reading this post [following]  make me feel nervous or dissuaded? No. Not at all. This is what we (MSers) do... what we choose to do for a chance to halt the progression of this disease. "I can do all things through Christ who strengthens me..." including HSCT. Philippians 4:13 The HSCT part isn't in the Bible. I added that. ๐Ÿ˜ But, it's absolutely true! I KNOW that the Lord directed me to do this. Nothing will dissuade me.

If you're also interested in reading someone's experience, look below. If you're interested in giving me a chance to stop the aggressive progression of my MS: 
▪︎ https://givetaxfree.org/campaigns/rebeccas-hsct-adventure/
▪︎ https://www.gofundme.com/f/rebecca039s-hsct-adv
▪︎ PayPal:  rebeccashsctadventure@gmail.com 
▪︎ Mail: send message for addres
~~~~~

"Mimi xxx collapsed as I was taking her to bathroom, @11:30 PM  her eyes rolled back in her head. I screamed for Jesus then  I screamed in hallway for someone to help me, as she laid in a puddle of urine her dead weight  was like 300lbs, I was able to sit her dead weight up against the wall all I could do was call on Jesus, as David Abbo Trevor Snarr,  Marlo's Mom,  Yoselim the nurse  , Angel, Nurse Paco and Javier helped me with my wife as the nurse rushed to get her vitals and sugar levels, Sam's brother helped me clean up the mess , I managed to pick her up off the floor and get her in the portable shower chair,  I continued to ask her my name  she said Q then I asked her what was her name she said Mimi as I asked her when was her birthday she said Nov 7 as I begin to watch her come back, she asked me what happened, as I held her tight to my chest and prayed I'm filled with tears and grateful to God for dispatching and Angel to My Wife, she began to demand I give her a shower as everyone decided to leave , the nurse instantly without hesitation began to roll up her pajamas pants to help me remove her clothes to shower her, I noticed she was back in her right mind, so I told the nurse thank you in Spanish, and I would get her from here as we positioned the shower chair in the big shower, the nurse left and I removed her soaked clothes and begin to clean her up to take away the shame, after a full bathing I got her fresh clean under garments, a t shirt and a pair of my shorts , I clearly saw she was back , as I walked backwards with both her hands gripping mine we took one step at a time back to the bedroom walking backwards,  as I sat her on the bed I just held her tight and thanked God. I ran to the 1st floor from the 4th floor to find ice cause she stated she hit her head in the fall, Paco the 2nd nurse found an ice pack in nurses fridge as he came with me back to our 4th floor room to check  vitals again , all was good, I got her tucked back in with a kiss as I prayed for her and Thanked God for the angel dispatched to her, I remembered she told me she wanted full transparency so she could reveal the real journey to fellow MSers no matter how personal it may be..Thanks for prepping me Kimberly Strowbridge & Brandy Askew Thank You fellow recipients of this group for rushing to help me with my wife..
THIS IS THE REAL HSCT MS STEM CELL TRANSPLANT JOURNEY...SHE SHALL RECOVER  ALL , The husband's pain, laying on pillow outside her door til she rises soaked with tears, 7 yrs of caregiving it's almost over Thank You Jesus." 

Friday, September 20, 2019

WARNING! This is not a normal fundraising post!

Want to Contribute $, But Can't?

Are you thinking that you would love to send in a donation, but really aren't in a financial position to do it? It's okay! Please don't think that I'm sitting here wondering why so & so hasn't contributed yet, because I'm not! Let me be straight up with you. My prayer from the very beginning is that people would give as the Lord directs.

There are ways you can help, even if you can't afford to give financially yourself. You can share these post on Facebook and with other people you know. Several people have contributed, and I don't even know who they are! Every single time, was because someone had shared my story... Either on Facebook, or when talking to another person. Please don't underestimate your influence!

We are in the process of planning a fundraiser. Things are not finalized yet, but I do know that we plan on having a silent auction as part of it. any and all donations are really appreciated. Maybe you have something laying around your house. Maybe you know that you have a service that other people might really enjoy... crafts, lessons or lawn mowing or something like that. I really am not an expert in these things, but maybe you have an idea!

Most of all... please pray! I cannot do any of this... fundraising or HSCT, without your prayers! ❤

For anyone who can give...
▪︎ https://givetaxfree.org/campaigns/rebeccas-hsct-adventure/
▪︎ https://www.gofundme.com/f/rebecca039s-hsct-adv
▪︎ PayPal:  rebeccashsctadventure@gmail.com
▪︎ Mail: send message for address

Monday, September 16, 2019

Don't Worry Be Happy!


This is totally me right now... $65,000 might be a lot of money to raise, but I TOTALLY know it's going to happen! Thank-you! 

"And my God shall supply all your need according to His riches in glory by Christ Jesus." Philippians 4:19

Saturday, September 14, 2019

HSCT in Mexico? Is it clean?

You have been wondering... is this place clean enough for such a medical procedure? It's an important question! So, I brought in a first-hand expert, my friend Jodi, who had HSCT done there less than a year ago! :)


Thursday, September 12, 2019

Ways to Give :)




I am so humbled and grateful that you all have been so generous helping me to get this treatment. In just one week, you have already raised more than $11,000! You have kicked this first week of with a bang! Thank-you! Please continue to share too... it really IS making a difference!

To make things easier, here is a brief summary of giving options:

▪︎ https://givetaxfree.org/campaigns/rebeccas-hsct-adventure/
▪︎ https://www.gofundme.com/f/rebecca039s-hsct-adv
▪︎ PayPal:  Rebeccashsctadventure@gmail.com
▪︎ Snail Mail: Message me for address... the internet is too sketchy to put it here. :)

The online options are the easiest ways to give. Some of you have asked about "their cut," so yes. They do both take a percentage of donations received. To me, this is expected. They need to run their site & I'm thankful for the options.

If you would like to avoid that & make sure that all of your money is used for HSCT, you may use either PayPal or snail mail it. Please remember, that you will not be able to receive a tax deduction this way. I am personally not picky at all! I am just incredibly thankful!

Another fun way to give & get something for yourself at the same time, is by ordering Pampered Chef through the party my friend offered to do. A percentage of the sales will go into my fund! Party ends on September 30th. Order here: 
https://www.pamperedchef.com/party/rebeccatodd0908 [Local peeps: There will be a show at my house on Saturday, September 28th.]

Thank you so so very much for your generosity, both with your money and prayers! You all are the ones who will make this happen! ThAnK-yOu!
▪︎ https://rebeccashsctadventure.blogspot.com/

Monday, September 9, 2019

You Have Been Granted Top-Secret Clearance! :)


Top-Secret Clearance! That's right, folks... yooou have been granted top-secret clearance to A Day in the Life of Rebecca. I have to tell you something... I honestly did not want to write this. This is something that I try not to show people at all (I don't want pity & I don't like to share the negative). Only my family sees it. But, I'm feeling the need to be really transparent here. You can't really understand what's going on, if I don't tell you, right?

This is really hard for me. You know me... I don't like to dwell on the negative or the difficult stuff.  It's just the way God made me... but it's also a form of self-preservation. If I dwelt on the negative, it would beat me down, and I would be a very sad and despondent person. Who wants to live their life like that? Not me anyway! To me... MS is just a thing. It might make things stinky or more difficult, but whatever.

So, today...
Six days a week, I usually do The MS Gym with my buddy group via video conferencing, at 10:30, 12:30 & 2:30. I've learned that movement is medicine, so while there are some days it doesn't completely work out, I'm committed to this. In fact, I'm sure I would be bed-ridden right now, if it weren't for The MS Gym!

I was struggling. Spasticity was crazy. So, I decided to try something, specifically for spasticity in the toes, ankles & legs. I was very thankful our daughter was home, because I needed her to come help me get up twice, because my body was just not doing what I needed it to. At the 10:30 session with my buddy group, I'm sitting in my scooter, because it's more stable than my Wheelie Walker. I couldn't even pull my foot up onto my opposite leg to try & rub it out. Argh. Need Elodie's help a couple more times. The struggle is real today.

Around 11:15, I realize that I forgot to take my meds earlier, which also helps with spasticity. Thank goodness. It's not actually more progression. This is also good news, because I wasn't sure how I was going to take our daughter to her orthodontist appointment. That's why she's home today. I couldn't rely on being able to pick her up from school for the appointment, so we adapt. Anyhow, big day!  She was getting her braces on, hubby had a meeting, so I had to be there.

Thankfully, our daughter knows how to load the scooter onto the lift & tighten it down. All I had to do was get into the driver's seat of our SUV. After 10 minutes (maybe it was 6 - it felt like forever), my daughter's help, some tears of frustration (me), & my daughter cheering me on saying,  "You can do it Mommy! I believe in you!", I finally made it into the driver's seat. Thank goodness, lifting my leg two feet in the air uses different muscles than driving & I was then fine.

After we got back, a dear friend dropped by unexpectedly. I love when she does that!
๐Ÿ˜€ MS can affect your breathing & vocal chords. It does for me. I guess the day had been more stressful than I even realized, because I was very hoarse. This is new. As the stress went away, so did the hoarseness. Just the normal slur now. Talked about how I wish our kids didn't have to do so much for me. More tears. My ongoing prayer is that the Lord uses this for their good. My friend offered to help with a couple of fundraising things. That took a huge load off! She also prayed with me! What a blessing!

Hubby will probably help me into bed tonight... maybe even turn on the electric toothbrush, because sometimes that's just super hard.

Okay. That's it. I will probably never say anything about this stuff again. It's just life. It happens. It is what it is. But, you can see a little more of why I am trying to get this treatment. HSCT is it. There are no other options.

If you feel led to help make this happen (ThAnK-yOu!!):
▪︎ https://givetaxfree.org/campaigns/rebeccas-hsct-adventure/
▪︎ https://www.gofundme.com/f/rebecca039s-hsct-adv

Saturday, September 7, 2019

Question-Answer Game


Let's play a game! We'll call this the Question-Answer game! I'm going to guess some questions you might have and then answer them! (See? You don't even have to do anything!)

Q1: Why do you need the money?
A: It's not covered by insurance 

Q2: Is your HSCT already scheduled?
A: It sure is!

Q3: When is it scheduled?
A: I leave on Sunday, February 2nd & it starts the next day.

Q4: Okay, so when do you need the money?
A: I'm so glad you asked! The money needs to be paid in full, 2 months before I go. So, it needs to be turned in by December 2nd.

Q5: Are you doing anything else to fundraise?
A: Yes... we need a lot of money, right? So, there are several ideas in the works just trying to figure out how to implement them all though. I've never done this fundraising thing before, so I'm figuring things out as I go.

Q6: What kind of stuff are you planning & when?
A: Just brainstorming right now... upcoming events should hopefully include handmade beaded necklaces, fun t- shirts, Mexican coffee, Mexican food, Fun Walk/Run, Pampered Chef, & our daughter's best friend just told us about her & her younger sister having a lemonade stand. And maybe, just MAYBE our son will shave his head for money. Really not sure about that one though. But stay tuned! It needs to all happen soon!

Was your question answered here? What other questions do you have? Write them here & I'll be sure to answer those questions too!
๐Ÿ˜€

Thursday, September 5, 2019

What's Going On?




My Journey with Multiple Sclerosis…And What I Hope to do Next, with YOUR Help!

What do homeschooling, holistic medicine, teaching a Sunday school class, and fundraising to travel to a foreign country for a medical treatment not available in the U.S have in common? If you answered absolutely nothing at all, that would be... incorrect! However, if you intuitively answered that they were random things that Rebecca 'told God' in the last few years, "No way, not a chance, never!" to, but God then said, "Haha! You're really funny. That's what you think," then you would be absolutely 100% correct & you win the prize of great self-satisfaction! ๐Ÿ˜

I'm in the midst of a twist. As you know, I have Multiple Sclerosis (MS). There's no cure for it, & I'm totally fine with that... "It's all good!" [Yes, I totally just quoted myself there.] I've done so many different things to manage my symptoms over the past 11 years... diet, daily MS drug injections, an alternative compounded med, holistic treatments... In fact, I went from 100% holistic all the way to big pharma [Lemtrada], which can be considered (for the ease of an uber quick description) a half-dose chemotherapy. Anyone who infuses Lemtrada, hopes that it will be their last MS med ever. Most "Lemmies" go through two rounds of the treatment, one year apart. I've done three. In fact, I was only the second person my MS Specialist had ever approved for a third round. I've experienced benefits from each round, however, other symptoms continue to progress.  I am currently in the secondary progressive stage of MS and things are getting more difficult to manage, both for me as well as for my husband and family.  I don’t want to sound defeated, because I am NOT, but MS has taken me on a very difficult journey and I have been told I won’t recover what I have lost.  I am looking to stop future progression (which could make life even more difficult) from happening!

So, all of this brings us to this moment... as of right now, there is one more opportunity to halt the progression of my MS… and, it is just in time, as my disability score is at the top of what is accepted for this treatment. It comes in the form of something called HSCT (Hematopoietic Stem Cell Transplant). HSCT uses high-dose chemotherapy to ablate my immune system. My previously harvested stem cells are then reinserted to help with the recovery of obliteration. HSCT has actually been around for decades and has been used for cancer and other autoimmune conditions. However, it isn't until the last few years that it has also been used for MS. While there are a few limited (extremely expensive, $120,000-$200,000) trials for it going on inside of the United States (for which I have found out I don't qualify), there are other options available... They do require a stamp in the passport & the entire fee for the month-long procedure paid in full, two months ahead of time. 

Enter Clinรฌca Ruiz, in Monterrey, Mexico. The efficacy & safety of their HSCT protocol is amongst the top in the world. The cost for having HSCT done there, plane tickets, etc… is $65,000. That is the fundraising goal we are taking on! I have to be real transparent here... we don't have that money. Okay, we've had to spend a lot of money on my health over the years & we don't have anything extra for this. So, in order for this treatment to be a possibility, I would need to raise money for the treatment, as well as money for the airfare, food, other fees, and even tips for staff at the treatment center. As you might imagine, a caregiver is required for this treatment. My husband will come for some of the time and my amazing Mom has offered to come for the rest. 

I have set up a fundraising account at givetaxfree.org, to officially kickoff my fundraising!  This is a non-profit organizations, which if you donate, can provide you with a receipt to write off on your taxes. I also have set up a GoFundMe page. As any for-profit business, GoFundMe keeps an 8% commission, so I also encourage givetaxfree.org, PayPal, or a contribution sent directly. Information you need is listed below

givetaxfree.org              
GoFundMe                
PayPal                      
     RebeccasHSCTadventure@gmail.com

You can also check out:

Facebook       
     Rebecca’s HSCT Adventure

God has taken me (and my family) on this journey... this amazing, twisty, throw you upside down, but exciting, because He's in control kind of journey.  I can't thank-you enough for being part of it!


Your Friends,

Rebecca… and Phil, Philip, & Elodie

Summer 2018

Phil, Philip, Elodie, Moi, Kylee
(We obviously need an updated family photo!)