RIP Sweet Angel New Life began for Nicholas on 10-16-10 @ 8:25 am
Team Nicholas
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!
Ten 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, go to every other day and are now on the highest dose daily.
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 St. Judes in Johnson City more frequently: platelets weekly and packed red cells every two-three weeks.
4/06 We were told that Nicholas would have a 90 percent chance of having a 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 NEW 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.
This is the skit the boys did at Camp!
Journal
Friday, October 28, 2011 6:36 AM CDT
Hello,
I just couldn't update on our first year without Nicholas" angelversary date....but it was good to have a couple of volunteers from Camp Sunshine to be with us the weekend. Jill and Mike were wonderful and kept Spencer occupied or rather he kept them occupied! They played wii and air hockey and carved a pumpkin to look like the Death Star on Star Wars! Jill and Mike were exhausted Fri eve but began on the pumpkin anyway! They were super troopers that is for sure! Spencer would give Mike ideas on what a block would look like and Mike would work wonders! He actually carved out Spencer's name in it without Spencer knowing! It was hilarious! Saturday, Jeff and I cooked...Jeff smoked Boston Butts, whole chickens, veggies and dutch oven chocolate delight! It was delicious and enough to feed an army! Jeff's mom, sister and her granddaughter, and my mom, dad, sister and brother-in-law, and a couple of neighbors came and ate with us. It was bittersweet. We had a white candle instead of all the red ones we've burnt! White to represent our little angel in his perfect condition in the arms of Jesus. I'm so thankful that I know where he is and that he is safe and sound.
1Th:4:13: But I would not have you to be ignorant, brethren, concerning them which are asleep, that ye sorrow not, even as others which have no hope. 1Th:4:14: For if we believe that Jesus died and rose again, even so them also which sleep in Jesus will God bring with him. 1Th:4:15: For this we say unto you by the word of the Lord, that we which are alive and remain unto the coming of the Lord shall not prevent them which are asleep. 1Th:4:16: For the Lord himself shall descend from heaven with a shout, with the voice of the archangel, and with the trump of God: and the dead in Christ shall rise first: 1Th:4:17: Then we which are alive and remain shall be caught up together with them in the clouds, to meet the Lord in the air: and so shall we ever be with the Lord. 1Th:4:18: Wherefore comfort one another with these words.
We know he is with Jesus and his spirit will return when Jesus returns to gather His children on earth! The "DEAD IN CHRIST" shall rise first! Praise the Lord! To forever be with the Lord. We know his spirit has returned to the one who gave it! We are so thankful to have the priviledge to be Nicholas' parents. It is a honor to have nurtured an angel. Spencer is an angel in his own way too and we love him too. Spencer will talk of Nicholas and all the fun times but it makes us all sad as well. The pain and hurt just doesn't go away even knowing he is at perfect peace and totally out of pain, for which we are so thankful but our humanistic minds are still sorrowing....no one can tell me what they think Nicholas would want for they don't know. We believe what the bible says..."The dead knoweth nothing" and he doesn't know anything that is happening to us on earth. If he did, it would make him sad. He hated crying..couldn't stand to hear it or see anyone else crying....I'm glad he doesn't see the family mourning....or know it. He wouldn't be at peace if he knew. I'm glad its that way. I only want him at perfect peace and happy. But I know we will meet him again one day and that will be a BIG FAMILY REUNION to forever be with the Lord. Jesus will call and all the dead that are HIS will hear his voice and raise to enter into Heaven! Won't that be wonderful! Spirit reuniting with body to raise and enter Heaven to a new life! The ones that aren't Christians will get their just reward as well but it won't be Heaven.
Joh:5:28: Marvel not at this: for the hour is coming, in the which all that are in the graves shall hear his voice, Joh:5:29: And shall come forth; they that have done good, unto the resurrection of life; and they that have done evil, unto the resurrection of damnation.
We need to worship the creator.....not the creations. God gave life to all He created and only He deserves the praises, worship, and glory...not his creations. That's why we do not worship Nicholas or Spencer but their creator! Nicholas was a little love bug that spread God's love everywhere he went and was precious beyond measure but only God's love thru him was shining through. God's spirit shone brightly radiating God's love for all of us to enjoy..and enjoy it we did. Thank you Lord for your precious gift of Jesus Christ who died, was buried and rose again that we may have a way to enter Heaven as well for eternal life....a new life.
Don't ever lose sight of your goal! Heaven! Blessings and Bear Hugs, Donna
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