Nathanael's Letter, Fall 2013

Dear Friends and Family, 

When my wife, Roxie, told me that she and our friends were planning another fundraiser for me, I told her that I would like to write this year’s letter. What a blessing that I am able to do this (with her help).

First of all, I’d like to thank ALL of you for your various means of support! There is no earthly way I would be alive today without the help of my stem cell fund. Having a resource for my treatments is amazing because I know so many people don’t have this privilege. Thank you for being a part of my journey through your concern, prayers and financial help.

Here is some background on the challenges I’m facing. Three years ago I was 85 pounds and confined to my bed unable to move for weeks at a time. I had and still have, painful fractures all down my spine due to advanced Osteoporosis, Aplastic Anemia (a life threatening blood cell disorder), and advanced Lyme Disease (plus co-infections). At that time, it took two people to help me move because I was so fragile, and my parents, wife and caregiver had to tend to my every need at all hours of the day and night. It was the lowest point of my life. I believed that I would not be around for long. In a final effort, I asked if I could do the one thing I had not tried—Umbilical Stem Cell Transplantation (USCT). On the day that we did my first USCT injection, we received a random call letting us know that a family friend would provide funding to do multiple treatments. God was not allowing me to go home yet.

Those initial treatments saved my life. I have regained: mobility around my home; brain function that allows me to remember things, to read and write again; metabolism to put on desperately needed weight to cushion weak bones; and the ability to comfort and counsel others with health issues. The USCT and supporting treatments have kept me stable, but right now I am slipping into a dangerous place. I am down to 95 pounds, have continuous low red and white blood cell counts, and am battling constant pain, fatigue and weakness. USCT is the only protocol that has helped me, and up to this point we have only been able to afford unmatched umbilical stem cells. My goal for this coming year is to try HLA (Human Leukocyte Antigen—immunologically matched tissues and blood) typed umbilical stem cells which are considerably more expensive: $32,000 for testing, searching for a match, harvesting and administering the cells. However, the benefit to my body would be 200 million matched cells rather than 5 million unmatched cells. I liken this to putting a new engine in an old car rather than getting a tune up. This would be entirely out of pocket for us on top of our other medical expenses.

To help kick off this fundraising effort, our devoted friends, Matt Borst and Kevan Morshed, are again holding a golf tournament in my honor. The 3^rd Annual Nathanael Daggett Lyme Disease Awareness Golf Tournament will take place in Santa Fe, New Mexico on Saturday, October 12, 2013. We are not only looking for more golfers than ever, but also for sponsors and volunteers who would like to help with planning and running this event. Please see the enclosed flyer for details.

A fund has been established in my honor with HELP HOPE LIVE (formerly NTAF) to help with these medical expenses. HELP HOPE LIVE is a non-profit organization that has been assisting the transplant community for more than 28 years. All donations are tax-deductible and are administered by HELP HOPE LIVE for transplant-related expenses only. If you’d like to contribute:

Make checks payable to: HELP HOPE LIVE

Note in memo section: Nathanael Daggett

Mail to: John Daggett, 126 Bishop Lamy Rd., Lamy, NM 87540

If you would prefer to make an online donation you may visit www.helphopelive.org and enter Nathanael Daggett in the “Find a Patient” box on the homepage. You may also find updates from my wife there.

Thank you for taking the time to read my story and consider my current needs.

Sincerely,

Nathanael Daggett (and Roxie)

roxiedaggett@gmail.com 

Contributions are tax-deductible to the extent allowed by the law. This campaign is administered by HelpHOPELive,a 501(c)(3) nonprofit providing fundraising assistance to transplant and catastrophic injury patients. Information: 800.642.8399.

Smokin' Hot Raffle for Nathanael!

With Christmas and Chanukah right around the corner, you can't afford not to do this! Email roxiedaggett@gmail.com to place your ticket order!!!

3rd Annual Golf Tournament: October 12th in Santa Fe, NM!

Little Man Keats

One of our bestest friends, Meag Diamond, and her little man Keats came to visit us for a weekend this past July before heading to Guatemala to retrieve hubby-papa Jose. It was a real treat to get to meet one of my dear friends' adorable babies that seem to be growing up so quickly. I have missed meeting so many of them when they are this size!

Orale, amiguito!!                              N's beloved caregiver, Maria, with Keats.

 N and Keats were fast friends.

 Doesn't he go perfectly with the Turkish rug!!!???

 Keats and Meag enjoyed walking through the garden each morning. This guy loves trees and stares at them intently. He was completely self-entertained and rarely cried at all. A calming little presence.

Flora was representing the English Staffy nanny dog lovin'! She always tried to sneak her way to him to make sure he was comfy cozy. I highly recommend this breed for entertaining and watching over children! No better devotion and playfulness could be asked for!

Paco, our other English Staffy, was a bit shocked that something cuter than him came around. He was anxious about losing his status as best number one son so he constantly tried to lick Keats to assert his dominance, but eventually got adjusted to his descent on the totem pole.

How can you compete with this?

Thank you, Sweet Meag and LMK for visiting your auntie and uncle and perritos in Lamy! We love you so!!!

Los Poblanos Historic Inn and Organic Farm

Franco flew out and took N's momma, Cho, and me for a long Memorial Day Weekend girl's get-a-way to Los Poblanos Historic Inn and Organic Farm in Los Ranchos de Albuquerque. The setting was magical and the food was sublime. All grown on site and slowly cooked. I highly recommend saving your shekels to stay there at least once in your lifetime.

Bon Appetit magazine recently rated it the #6 Food Lover's Hotel in the U.S. Yes, folks, it really is in Albuquerque... in the old ranch district near the Rio Grande. With peacocks.

Each night I had stress dreams about missing breakfast. Housemade granola, farm fresh milk, hand pressed juices, hot bisquits, blue corn pancakes, breakfast chilaquiles... all in a sunlit dining room.

Dinner was off da chart, too...

What are you waiting for?

You walk across this old courtyard to check in with the inn keeper.

super jolly after dinner rollicking in the main sala! hee hee hee... no cookin'! 

La Merienda is the restaurant and they constantly change dining rooms based on special parties so you never know which romantic space you'll be eating in. Very fun.

Moon rising over the old willow tree...

We also took a day trip to Acoma Pueblo, the oldest continually inhabited community in the U.S. We got to take a tour atop the 800 year old mesa where residents still live to this day. 

These are the old foot and hand holds the Acomas used to go up and down for centuries. 


We woke up by the old willow tree and lotus pond each morning and strolled over to breaky.
So very nice...

                             Good morning, Kevin.

Albert and Kevin, the resident peacocks, screamed all night like guard dogs. Apparently, that is one of their ingrained duties so the inn kindly provides earplugs on your bedstand to prevent sleep loss.

Meyer lemon mousse with homemade poppyseed cake cusped in blackberry compote was just one amazing comestible...

Thanks, Franco--and JD for taking care of N and dogs--for such a wonderous trip! It was awesome.

Alas... Stem Cell Therapy 2013!

We were getting very discouraged this winter by the delay in N's treatments. I found myself almost giving up as I watched my husband dropping pounds by the week. He is now down to about 100 lbs. which is extremely concerning given the severity of his osteoperosis. I told a chiropractor recently about his weight and his bone density-- ranging from -4 to -6 all the way down the spine with the multiple compression fractures. She was shocked and said there was no way she could do spinal decompression (a pain relief treatment for disks) on someone with his fragile bones. Each time I looked at N I wondered how much further down he would go before he suffered another fracture which would make him bedridden again (our worst nightmare). And what about his poor organs getting compressed-- a horrifying result of his shrinking spinal column!? Not to mention the stomach pain that had been keeping him up for nights on end (on and off since August). We wondered, is it the Lyme or the organ compression? Each time we would schedule a treatment some symptom would flare up and cause him to go back on antibiotics or antiinflmamatories. No stem cells, no progress, more slipping. His parents, sister, my mom and I have been heartbroken.

Then God did something. Hilary (N's mom) and I cried a lot and cried out a lot to God together. I asked many of you to pray. Suddenly (and I mean suddenly) the stomach pain became manageable and God lifted a cloud of sorrow and replaced it with resolve and hope. It was a turn around-- a sign for good that cannot be explained as much as felt. N and I talked a lot and we realized that we are in a war with two fronts. One nemesis is the Lyme and it's insidious coinfections; the other is the osteo which is like a time bomb on your bones and structure. Then there's plenty else in between, but those are the two overwhelming enemies. We rallied and realized we've been blessed with many pain management and stem cell stimuation tools in our home. These tools undergird the gift of his fund which has allowed us to continue miraculous stem cell therapy thanks to the support of many. We know that while we face some impossible odds, we have some wonderous, targeted resources at hand. Thanks to the support of many through prayers,  help, love and gifts, we are able to take on this battle again.

I believe this gift of motivation and the grace we are currently experiencing is a result of many fervent prayers. On Saturday, 4/27/13, Nathanael was FINALLY able to recieve another critical stem cell treatment. He has been fatigued and in pain without his meds and supplements, but through many prayers, is doing better than he has with last year's treatments. He has a smile on his face, took a walk in the sunshine yesterday, and is back to directing some situations like an air traffic controller. That's my guy.

These treatments have totally saved his life and have given us the best 2.5 years of our marriage (even though it's been terribly hard!). His mind is renewed-- he can read, concentrate and remember things again, I can tease him, and we can take little walks outside. Somethings I thought were lost.

We celebrated 9 years of marriage this month (even though we've been friends since middle school)! His grace is our strength.

Thank you for your care,
Nathanael and Roxie

And He has said to me, "My grace is sufficient for you, for power is perfected in weakness." Most gladly, therefore, I will rather boast
about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong.

2 Corinthians 12:9-10

9 years!

Engagement photo, circa 2004

9 years later!

Super thankful for this man! Each day with him is a gift. Even though he is sick, he still takes wonderful care of me pumping me full of vitamins, health advice, prayers and encouragement. We celebrated 9 years together this month on April 3rd. 

Stem cells are delayed due to a stomach flare up. We'll keep you posted...