2nd Annual Benefit Ride for Papa Bear

CMA's 2nd Annual Benefit Ride 08!!
Would you believe he was in the hospital 2 days later with pneumonia???



Nicholas was mis-diagnosed with TAR syndrome at birth (9/10/98) and we were going for hand surgery at Shriners when a cbc showed that his platelets had dropped from 132k to 116k. They wouldn't do any more surgeries until we were seen by a hemotologist! We did and waited for the Fanconi Anemia (FA) test...It was positive of course and we were devastated. That was 5-14-01, two weeks after we had seen Dr Kalwinsky in St. Judes at Johnson City! We were sent to Memphis, TN but they do not do Bone Marrrow Transplants for FA! We then transferred to Cincinnati Childrens FA Comprehensive Center! It was such a relief to see drs who were aware of FA!

Nine years on a roller coaster which has included
27 surgeries,
numerous drs visits,
numerous pneumonias and hospital stays,
g-tube then changed to g-j tube,
v-p shunt for hydrocephalus,
Trach due to paralyzed vocal cords,
5 PICC lines,
2 ports,
and a Central line.

As his marrow has failed, he has had numerous infections and began G-CSF 3 times a week on 9/29/04, then his ANC was dropping even more and on 10-06 we had to up the dosage and go to every other day.

12/04 Nicholas was hospitalized with pneumonia and we began our transfusion dependency, platelets every two weeks and red cells once a month. His marrow hasn't really recovered and we have tried every bone marrow stimulator for two years and he hasn't responded to any of them. As his marrow continues to fail, we are going for transfusions at Johnson City more frequently: platelets weekly and packed red cells every three weeks.

4/06 We were told that Nicholas would have a 90 percent chance of having a fatal lung infection during the bone marrow transplant(BMT) due to the colonization of pseudomonas as well as 3 other bugs. A BMT is what would correct his failing bone marrow, restoring it new life. The one thing he needs to live, he cannot have.

Through all of this, Nicholas has continued to be a pure angel. Never complaining, thinks its a treat to go for transfusions, and a champanion bear hugger as well as butterfly kisser!
He is our hero!

He has a wonderful brother named Spencer that loves to aggravate him but would fight a bear over him as well! He worries about him and thinks of him constantly, never failing to buy him a gift when he is out. He is the best brother in the world!


The Prayer Bears Website
Send me your prayer requests or you can join us for prayer or to pray! Pray without ceasing!



Blood Mobile Unit will be:

Food City Wise on every 1st and 3rd Thursday of the month from 1 to 6
Food City Big Stone Gap on every 2nd and 4th Thursday of month from 1 to 6
(If a month has 5 Thursdays, - we will NOT be at Food City on the 5th Thurs.

I've created a Facebook SponsorMe page for Nicholas, join Team Nicholas and be a supporter!



Join Team Nicholas



Latest song!

I created a message board for Prayer Requests!

Feel free to post your prayer requests there or offer encouragement!


Sponsors for Fanconi Anemia:

Caddy for a Cure
Check out a Sponsor for FARF! and win a chance to be a Caddy!
Caddy for a Pro Golfer during a practice session!


CMA is having their 2nd Annual Benefit Ride for Nicholas!
Nicholas’ 2nd Annual Benefit Motorcycle Ride
Registration begins at 11 am with departure at 12 noon. Ride is by donation only and will be approximately 95 miles with several stops and door prizes given at each stop. The ride will end in Coeburn where the family of Nicholas will be hosting a hot dog dinner as a thank you to all of the riders. All proceeds will go to medical expenses and treatment for Nicholas, who has FANCONI ANEMIA. The ride is sponsored by Friends of Nicholas Boggs. Rain date is April 27th.

Call Kimberly 328-3631 or email her k13c@yahoo.com

Journal

Wednesday, May 7, 2008 7:24 AM CDT

Hello,

I do believe that my baby is getting better! I didn't think so early yesterday evening, as he was still grumpy but late last night I could see a smidgen of a difference. He definitely needed that second antibiotic. His face has petechia all over it and I know his counts have already bottomed out. I'm worried about waiting until tomorrow but as long as he isn't coughing up blood, I'll try to be cool! I told him to lie low today! I could tell he enjoyed his day outside yesterday! He was filthy! I love it! That meant he felt like getting in the dirt, throwing rocks in the creek, and just playing outside! He has a huge bruise on his shoulder though! He cannot remember what happened and gets really agitated when I ask! He said, "You know I can't remember when you ask me those questions!" Touchy! Attitude? I reckon so!

Spencer played hard and slept well last night! He woke me up saying, "Owww!" He had bumped his head during the night. School will soon be over and he will be in the 2nd grade and Nicholas in the 5th! Another indicator that time is flying by really fast!

I have more news but will have to wait until I can scan some things in! Curious huh! ha! Wait and see......

Joyel Wayne is suppose to come home today....so pray for them! Sissy Bear is exhausted! Bless her heart! She is definitely wondering "How on God's green earth do you do it?" HA! I continually pray for strength and it is continually granted! God is good! God is awesome!

Pray for all the others.....just too many!

Miracles, Mercy, Blessings, and Bear Hugs,
Donna

E-mail Author: dboggs4newlife@yahoo.com

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