Tuesday, February 14, 2012
Saturday, January 28, 2012
nathanael is 34!
viva tubbery the bear
n turned 34 on december 5th! sorry for the delay on updates.he had stem cell #7 in november and many have been asking how he's doing.
in brief, it's hard to say.
in brief, it's hard to say.he got suuuuuuuuuper sick going off his lyme antibiotics and did not have the visible boost he experienced with the first 5 stemmies when his weight soared from 85 pounds to over 100 lbs. the winter has been very difficult for n as it is for anyone with autoimmune disease. there is constant pain and discomfort to work through as a result of co-infections and deterioration from the osteoperosis. however, n's red and white cell counts remain in the normal range. totally a miracle. his weight is standing strong competing with mine. he is also walking around the house... and sometimes he wears pants! phew.
all i know is that i don't believe n would be here today without this miraculous treatment.
in other news...
as you recall, in august 2010 n was totally bedridden with a fractured sacrum among other dangerous issues caused by aplastic anemia and lyme. now that he is stable, we were able to FINALLY get an MRI two weeks ago to find out about the continuing back pain. the results were alarming.
the MRI noted that there are compression deformities from fractures on ALL of the vertebrae.--some worse than others. this is a classic result of osteoporosis. treatments are bed rest, pain control and all the stuff we're doing sans a surgery he is not eligible for. symptoms include things i've been concerned about such as height loss which i now know is the cause of his protruding stomach...which crowds the organs. that explains the bulgy belly i kept asking him to suck in. i feel really bad about this whole diagnosis. it's a devastating condition for anyone, and the treatment options are limited and the prognosis is grim. we could be freaked out, but i told n we have to be thankful for the choices we have. we have home devices that are good for bone growth, we have a chance to do more stem cell treatments, and above all, we have hope for a totally pain free life in heaven made possible by the gift of Jesus.
we also have our wonderful parents, grandparents, family, friends, and darling dogs who cheer us on.
we pray you are blessed for standing with us.
Thursday, November 17, 2011
stem cell # 7
N received stem cell treatment #7 yesterday morning. He has to be off antibiotics which keep Lyme and coinfections at bay. He also can't take enzymes which he depends upon for his severe digestive issues. He has to refrain for two weeks... These could harm the stem cell growth factor.
The procedure went well, but he is entering the hard part where the Lyme symptoms come up along with severe bouts of nausea. Tonight was really hard. I came home to him curled up in bed in pain and nausea. Tried some massage, but he just wanted to skip dinner and go to bed.
I prayed and I know someone else did too because he managed to get up, then eat a little dinner. I was so relieved. It will take a month or two to see what long term effect may be.
Just praying our way through it one day at a time.
Thankful for this opportunity and trying to have hope in God above all.
Sunday, October 16, 2011
The Best Day Ever: Golf Tournament for N!
October 14, 2011 was one of the best days I've ever known. My wonderful friends from work Matt and Kevan and Kevan's fiance Alex organized the most incredible fundraising golf tournament for Nathanael. Each moment was beautiful and our hearts were above and beyond touched and healed by the love, care and generosity that was poured into this event. It was remarkable...
Alexandra, Matt and Kevan are my heroes who gave so much time, money and passion to help a man they've not yet met. Not only was it a golf tourney, but it was filled with contests throughout the course to make extra money and get extra prizes. And not only that, they organized a wonderful $10 Happy Hour event for all non-golfers and golfers alike which included a putting contest and raffle. They really wanted a good turn out to make the most of the day and it happened! They even put an ad in a local paper (look east of psychic-holly and south of ghost busters:).They also procured COOL prizes for the raffle and I got to draw names for our room full of guests. It was so amazing and there was nearly $800 earned in cash alone... this is not including checks and golf tournament donations. It is still overwhelming!!!
The day was 70 degrees and sunny which was another total miracle as the previous week was 40 degrees with blinding monsoons!!! Six teams of golfers showed up including several of my volunteers tutors, a team from our dentist's office, Kevan's and Alex's landlord and friends, Matt's softball buddies and more! It was so moving to know folks took the day off work to do this. It was a long day, and it was so much fun!
I golfed-- another miracle! I decided I needed to expand my horizons and go for it even though I didn't know what I was doing. Kev and Matt made me feel great for the entire 9 hole contest cuz they said I at least hit the ball each time... eventually! If N gets well, we are taking up golfing for sure!! You get to drive a crazy cart and eat snacks in between laughing with friends.
Team Daggett... these guys were so patient and good to me. All they asked for was a collage of N and a speech. With God's help both things happened. I'll try to get the collage on here some day.
My colleague and good buddy Mr. James Spacht was there all day, too, to help out and supervise a Mulligan's course contest. He is rad!
Alexandra made these awesome hole sponsorship signs which were displayed all over the golf course! They looked killer! She also had to go to Staples during the tourney to print my collage in between making salads, picking up pizzas and millions of other details. She is simply amazing. There were many businesses and individuals who sponsored holes including my Gramma Bamma and our dentist! Matt's winning smile!
My in-laws were able to attend Happy Hour since my mom paid for Maria to stay home with N. There were about 50-60 people who came! God gave me a wonderful opportunity to share Nathanael's and my story of finding one another and finding the Lord and how He has helped us through such a tremendously difficult trial day by day. God let those Irish story telling genes come alive just in the nick of time... I was feeling pretty jittery all day from all of the attention on our lives so it really was a miracle.
My friend and fellow ESL teacher & volunteer tutor, Emilie Kief, is pictured above. She stayed all day to help behind the scenes She kept asking when Hilary would show up as they have gotten to know one another by working on a doggy health project together. She is one awesome lady and friend.
Matt and Kevan both spoke about how this event impacted them. Matt had the original idea and Kevan took the ball and ran with it (with Alex's incredible help and organization skills). Kevan spoke about his own journey with Lyme Disease and congratulated and thanked folks for their courage to attend this event to help someone with a very complex and widely unknown disease with an even more unknown and misunderstood treatment: stem cells. We both encouraged the audience-- and N and I encourage YOU, to see the documentary: UNDER OUR SKIN to learn more about the complexities and politics of this growing epidemic and the pain it causes in families like ours. Kevan was the one who also encouraged me to open this event and my story up to our volunteer community and to my co-workers. He wrote beautiful appeal letters to invite folks to participate in this journey and the positive response shocked all of us. My head is still spinning with all that has occurred.
I wish I had more photos of the many special people who came out to golf and to spend their Friday evening with us. Here is the core crew of friends who did above and beyond to make this happen saying it was their honor... they could have done more... they will do more next time... What?!?!? It's all too much.
There is a slide show at right with a few more photos and details on what was put together for our favorite guy...
He is looking good for someone who feels so crappy. Praise God the weight is still staying on... it is still so unreal to me sometimes. It is humbling how of all people, God has blessed us with these lifesaving treatments. Praise God for this opportunity Nathanael (the gift of God) has been given to keep fighting. He has had a good week after a terrible series of fevers and depression. This event has made his year and I've enjoyed more smiles than ever this weekend.
Alexandra, Matt and Kevan are my heroes who gave so much time, money and passion to help a man they've not yet met. Not only was it a golf tourney, but it was filled with contests throughout the course to make extra money and get extra prizes. And not only that, they organized a wonderful $10 Happy Hour event for all non-golfers and golfers alike which included a putting contest and raffle. They really wanted a good turn out to make the most of the day and it happened! They even put an ad in a local paper (look east of psychic-holly and south of ghost busters:).They also procured COOL prizes for the raffle and I got to draw names for our room full of guests. It was so amazing and there was nearly $800 earned in cash alone... this is not including checks and golf tournament donations. It is still overwhelming!!!The day was 70 degrees and sunny which was another total miracle as the previous week was 40 degrees with blinding monsoons!!! Six teams of golfers showed up including several of my volunteers tutors, a team from our dentist's office, Kevan's and Alex's landlord and friends, Matt's softball buddies and more! It was so moving to know folks took the day off work to do this. It was a long day, and it was so much fun!I golfed-- another miracle! I decided I needed to expand my horizons and go for it even though I didn't know what I was doing. Kev and Matt made me feel great for the entire 9 hole contest cuz they said I at least hit the ball each time... eventually! If N gets well, we are taking up golfing for sure!! You get to drive a crazy cart and eat snacks in between laughing with friends.Team Daggett... these guys were so patient and good to me. All they asked for was a collage of N and a speech. With God's help both things happened. I'll try to get the collage on here some day.My colleague and good buddy Mr. James Spacht was there all day, too, to help out and supervise a Mulligan's course contest. He is rad!Alexandra made these awesome hole sponsorship signs which were displayed all over the golf course! They looked killer! She also had to go to Staples during the tourney to print my collage in between making salads, picking up pizzas and millions of other details. She is simply amazing. There were many businesses and individuals who sponsored holes including my Gramma Bamma and our dentist! Matt's winning smile!My in-laws were able to attend Happy Hour since my mom paid for Maria to stay home with N. There were about 50-60 people who came! God gave me a wonderful opportunity to share Nathanael's and my story of finding one another and finding the Lord and how He has helped us through such a tremendously difficult trial day by day. God let those Irish story telling genes come alive just in the nick of time... I was feeling pretty jittery all day from all of the attention on our lives so it really was a miracle.My friend and fellow ESL teacher & volunteer tutor, Emilie Kief, is pictured above. She stayed all day to help behind the scenes She kept asking when Hilary would show up as they have gotten to know one another by working on a doggy health project together. She is one awesome lady and friend.Matt and Kevan both spoke about how this event impacted them. Matt had the original idea and Kevan took the ball and ran with it (with Alex's incredible help and organization skills). Kevan spoke about his own journey with Lyme Disease and congratulated and thanked folks for their courage to attend this event to help someone with a very complex and widely unknown disease with an even more unknown and misunderstood treatment: stem cells. We both encouraged the audience-- and N and I encourage YOU, to see the documentary: UNDER OUR SKIN to learn more about the complexities and politics of this growing epidemic and the pain it causes in families like ours. Kevan was the one who also encouraged me to open this event and my story up to our volunteer community and to my co-workers. He wrote beautiful appeal letters to invite folks to participate in this journey and the positive response shocked all of us. My head is still spinning with all that has occurred.I wish I had more photos of the many special people who came out to golf and to spend their Friday evening with us. Here is the core crew of friends who did above and beyond to make this happen saying it was their honor... they could have done more... they will do more next time... What?!?!? It's all too much. There is a slide show at right with a few more photos and details on what was put together for our favorite guy...
He is looking good for someone who feels so crappy. Praise God the weight is still staying on... it is still so unreal to me sometimes. It is humbling how of all people, God has blessed us with these lifesaving treatments. Praise God for this opportunity Nathanael (the gift of God) has been given to keep fighting. He has had a good week after a terrible series of fevers and depression. This event has made his year and I've enjoyed more smiles than ever this weekend.To top it ALL off, Matt and Kev had the Santa Fe Country Club make this beautiful trophy pictured above saying: "Nathanael & Roxie: The Undisputed Champions of the 1st Annual NTAF Golf Tournament." Simply unbelievable. I cry everyday.
Thank you EVERYONE who prayed to make this event the most amazing blessing ever! It has brought healing to our hearts that we didn't know was coming, and has built our faith in a deep way! I hope it blesses you, too!
Thank you EVERYONE who prayed to make this event the most amazing blessing ever! It has brought healing to our hearts that we didn't know was coming, and has built our faith in a deep way! I hope it blesses you, too! Sunday, September 18, 2011
golf tournament for nathanael!
My friends at work, Kevan and Matt, have worked with NTAF (Nathanael's transplant organization) to organize a golf tournament for Nathanael on October 14th in Santa Fe. I seriously can't believe these busy guys did this in between working the crazy beginning of school year on campus, and having not even met N.D. They are super wonderful dudes and I pray God blesses them for doing this.
If any of you golfers out there want to join us or sponsor a golfer that would be neat! The sign up and sponsorship forms are on his stem cell fundraiser website. If not, you can just pray it is successful and that I don't make a fool of myself since I haven't played since minigolf at bullwinkles in fullerton... in 6th grade.
If any of you golfers out there want to join us or sponsor a golfer that would be neat! The sign up and sponsorship forms are on his stem cell fundraiser website. If not, you can just pray it is successful and that I don't make a fool of myself since I haven't played since minigolf at bullwinkles in fullerton... in 6th grade.
Here are the St. Louis schemers... such nice fellows!!!! Thank you again, friends...
Saturday, August 13, 2011
elizabeth & "artists for nathanael"
hey all, our friend kim discovered a link to nathanael's fundraiser on a random blog a while back. i contacted the blogger, elizabeth, and she's not sure where she found out about us, but she wanted to do something to help. she created a post and button called "artists for nathanael" to be put on blogs and linked to his fundraiser. see post and instructions here: elizabeth's blog post for nathanael she is using this photo of n when he was a junior lifeguard (taken by kim long ago) which you can use to create a fundraising button on your own blog and forward to others to do the same.
PLEASE spread the word to help my beloved man! you never know what will turn out and we have been SOOOOOOOO blessed by all the people we have supported us in ANY way... general support, prayers most of all, ideas, love and gifts. thank you everyone. this process has been a blessing and has given us some hope in a hard year.
thank you for passing it on! thank you elizabeth for this creative and heartfelt idea to promote nathanael's cause!
Wednesday, August 3, 2011
rain and 80 years
the las conchas fire is 100% contained as of yesterday (36 days later). lots of damage done. now the summer monsoons are roaring in. thanks to God!
and...
my gramma bama turned 80 last week on July 28! see my cousin nick's wonderful tribute to her on youtube and be on the lookout for younger, dorky and some naked-with-fat-rolls pictures from days gone by:
i hear franco stole a concha for a barrette back in the 70s......go figure!
and... my gramma bama turned 80 last week on July 28! see my cousin nick's wonderful tribute to her on youtube and be on the lookout for younger, dorky and some naked-with-fat-rolls pictures from days gone by:and here is gramma's concha belt she commissioned an indian guy to make back in the 1940s. she wore it every day with her red navajo shirt, 501s, and mocassin booties when she was only 17. way to swing it, ba! wish i had that outfit!
i hear franco stole a concha for a barrette back in the 70s......go figure!sorry, i missed you party, bama. i got tired. they make me do wierd things.
love,
your dog
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