Monthly Archives: May 2018

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We’re HOME…. at last!

We’re HOME!!!

We’ve actually been home for about a week… but we needed to have time to settle in, figure out what our new normal would look like, and be with our kiddos who were beyond amazing while their parents were in a foreign country for six weeks.  We surprised them last Sunday (which happened to also be Mommy’s Day… double yay for me!)… they woke up to text messages saying we were in the air and would need a ride from the airport in a few hours.  Though we did enjoy the surprise, it was out of pure necessity that we couldn’t tell them because we didn’t know if/ when I would actually get to go home.

Have I mentioned how much I LOVE this kiddo???

Man… I missed this creative little love bug!

This beauty had our home all decorated with flowers! She’s simply the best!

Felt AMAZING to be home!

Hayden already had a Luchidor mask… but we found him this awesome kite to match!

Tear stained cheeks for me as I finally hug and hold my babies!

And I actually felt good enough for a brief walk to the beach! Praise God!

I had to drink massive amounts of water to thin my blood, take Advil, and wear these lovely things… oh the beauties of flying home after all these treatments!🤪

We were exhausted… had to stay overnight in LA and then up at 4 am to catch our flight home… but this is the pic our kiddos woke up to saying we were on our way home and needing a ride in a few hours!💘😍

Here’s the wrap up of our trip and treatment:

Towards the end of our treatment time in Mexico we had to figure out the pain in my back and after the MRI, we saw two protruding discs very low in my spine…  we knew that we would be facing surgery soon, but Dr. Morales saw strong potential for me to receive PRP (platelet rich plasma) injections into those areas of my spine instead of surgery.  We planned an early morning platelet extraction with the Chemist- Enrique and then waited a couple days while the extraction was completed in the lab.  I received two intense (and horrendously painful as my body doesn’t receive anesthetic well or quickly EVER) treatments.  Each treatment included ten anesthetic shots to the five areas to be injected and then the 15 HUGE injections began.  Though this was horribly painful, I am sooooo thankful that the doctor has such an amazing and tight knit group of specialists available at a moments notice to perform these treatments and that we were able to get them done just before I was finished with all the other treatments.

This clinic was and is AMAZING.  I received more treatments and such incredible care from the staff from the beginning to the end and honestly felt like I was in the best hands for defeating this disease and all of it’s co-infections.  We are confident that all the disease has been killed off in my body, and yet we are home with a HUGE 6 month detox program which includes an intensive 4 month antibiotic course to follow the amount of time red blood cells take to regenerate.  We have a long and possibly at times uphill battle ahead of us with recovery, but we are optimistic that with letting my body rest and recover as needed; we will beat this… all of this… and find out what our new normal looks like.

I will write more on what our everyday looks like these days, what we need, and how people can best help!

Thank you for keeping us in your prayers and praises!

Prayers:

Complete healing

My new red blood cells to be created in my body disease free

For a disease free bone marrow

For my hair to quit falling out and thinning from the 8 rounds of low-dose chemo

Energy to at least go on one walk each day

Praises:

For safe travels

Kiddos who were soooooo tough and amazing for all those long weeks

Grandparents who LOVED on them endlessly and selflessly for us

Successful treatment

For a strong as could be and built up body from all the treatments in Hawaii before Mexico

For all the meals you provided while my daddy was here with the kiddos

Live IT Out,

XO, Dani

Last Lonnnngggggg Plasmapheresis Treatment!

My last longggggg plasma treatment is about to begin. This is pretty darn hard on me and I’d love prayers for it to go smoothly and clean out the last of the bad stuff… our day yesterday had to be changed up dramatically and today is one that is beyond full and all treatments are extremely needed!

As soon as my plasmapheresis treatment is over, I’ll begin my IV IG again and this treatment, though extremely necessary, comes with its serious risks too.  We will be running this drip extremely slowly to know if there are any poor reactions at all and to make sure I handle it well for the upcoming months of treatment with IV IG.  This treatment alone is $10k for just this one treatment, and we’re praying this is a HUGE turn around point in my overall, everyday feeling and energy.

Then to wrap up our long day here we will receive all my normal shots, IVs, and PRP into my protruding discs low in my spine!!!  We’re also praying this helps tremendously and keeps me from having all this horrible back pain!  I’ll be doing these injections for the next three days and I’m excited and nervous all at once!

Bring on the long days and let’s get home to those babies!!!!  Cannot wait to squeeze them and have goofy times with them at my side so soon!

XO,  Dani

LIVE IT OUT…   missing these girlies and Hayden too!❤️

 

Update from Mexico 🇲🇽

Already in week five of this intense treatment down here in Puerto Vallarta, Mexico and I’ve yet to have a spare moment to write.

We are doing as well as we can, we’re at the clinic at 8:30ish each morning and some days we don’t leave until 8pm at night. Other days we have a short break between the majority of treatments that last most of the day and then we come back for He last two that have to be administered later in the evening apart from the earlier doses.

Ive received four red cell exchanges and I’m now officially about half Mexican, I’ve received two plasma transfusions and I still have another plasmapheresis and red cell exchange to do next week.

Our days are long and full…  we’ve had countless tests ordered and run and we’ve confirmed diseases we knew were present and found new ones as well😰.

I received my central port and at the same time I was under anesthesia we asked to have my bone marrow biopsied.  We now know that while my blood shows no signs of Lyme disease (since Germany)…  I have a very rare lyme infection in my bone marrow. We’re aorking hard with our amazing doctor here to irradicate it as well as the Babesia and Bartonella, an EBV virus, and my MRI today is showing that my pain is not due to infection inflammation, but rather two discs that are protruding and will need surgery. I also received my IGG immune system results and I’m so immune compromised that I’ll be needing at least six IV IG treatments and possibly ongoing monthly. These are approximately $20,000.00 each and would be a monthly expense.

All of this info and then the financial stress, emotional stresses and being apart as a family is making it hard for me to breathe today…  cory is by my side each and every moment of my days and nights and is seriously a gift and blessing I am beyond grateful for and I’m just not sure how he hasn’t caved under all this pressure yet.

Some of this news is new as of today, some yesterday and we honestly haven’t had time to really pray, process, or think through the details of it all yet. It’s wonderful to finally be receiving answers and taken seriously and yet; this is BIG and heavy stuff and we need time to figure things out.

Thank you for your prayers…  please don’t stop!

Ill attach our fundraising site to this post again and we are soooooo grateful for any and all of your help financially…  this just keeps growing and we still have yet to treat our kiddos😬.

click here to donate

Praises to a Great and Mighty God for leading us here this far!  We are in the best hands we could be in for all of this.

Praises for parents that are able to be with or three kiddos and love on them for us!

We love you all and we will continue posting little pieces of our journey on instagram and Facebook in between blog posts, so make sure to find me there if you want the little bits on days that I can’t blog😜!

Live IT Out,

Dani and Cory too!