Team Nick - Day +219

Blog > October 2009 > Day +219

Day +219

Day +219 and Nick is doing well. He continues to face each day with a positive attitude even though he is stuck at home. Nick has been allowed to attend outside events and church events as long as it is in small groups. Football and MYF have been the high point of his week. Unfortunately, these days are becoming numbered because of the cold weather and the flu season. The isolation is a constant battle, Nick feels well enough to be out doing things but the threat continues to be too great to socialize and attend events inside that would include a large crowd. Seasonal flu and Swine flu is life threatening to Nick. PLEASE consider getting vacinated against the seasonal flu and swine flu....this not only benefits you but the many immune comprimised children and adults that you may come in contact with. You may be able to fight the flu without any problem but there are MANY people that you come ion contact with on a daily basis that cannot!!! Flu season is a very scary time for so many people that cannot fight the illness. If you choose not to get vaccinated, please stay home if you are sick. Okay, enough with my "get vaccinated " speech!

Yesterday, Nick was at Akron Children's for his check up, level check and IVIG. IVIG is an infusion that helps keep Nick healthy...it basically gives him an immune system to help fight off germs. IVIG is very expensive...about $10,000 per bag. Well, our insurance denied the treatment. So, now we are faced with a potentially very bad flu season with very little protection. He did receive the flu shot, so hopefully this will help. The doctors will continue to fight the insurance company and hopefully they can somehow convince the insurance company to reconsider.

Nick also continues to lose weight. The doctors are concerned because at this point, post transplant, there should be a steady weight gain. So, we met with a nutritionist and discussed ways to supplement his diet. Hopefully this will make a difference. I have to try to figure out a way to increase his calories without increasing the rest of the families calories....looks like I will be making 2 seperate meals. :-(

Also, Nick has a very infected toe which has made it difficult to wear shoes and walk. They cultured it yesterday and added antibiotic ointment and oral meds. Just what he needed...more pills to take!!!

Nick's skin continues to be a problem, as it is very fragile to the touch...any little bump or scrape and his skin tends to come off. This is a common complication of GVHD of the skin but also very painful and leaves him at a higher risk of infection due to open wounds. (Yet, another chance of infection!!!)

All of this may sound like alot but Nick really is doing so well! There are so many kids that are much worse off than Nick. Last month was a very hard one for our BMT family. Too many children lost their battle!!

We have been so blessed and we have so much to be thankful for!!
Yes.. Nick is missing his freshman year
Yes..Nick cannot play football
Yes.. Nick is still in isolation
Yes.. Nick deals with things that no child should ever have to deal with
BUT....Nick is still here with us, getting better everyday!!!! God is Good!

Thanks for checking in!!

Posted: 10/1/2009 10:24:49 AM by Sandy | with 208 comments

Comments

	Annette
	Dear Sandy; What a great report. I had no idea that Nick was able to get outside a little, or to attend MYF. That's Great!! I imagine it feels SOOO good to him. I also know that you are all facing a rough time of year, and that circumstances are challenging. Just wanted to say that I think Nick is remarkable, and that I am continuing to lift all of you up to the Lord for His healing, His peace, and an extra measure of strength. Also remembering Lori, and hope all is continuing to go well for her. Wishing you many more sunny days filled with only the very best. My love in Christ, ~Annette
	10/1/2009 10:02:27 PM

	Haley B
	It is get that Nick is able to go outside sometimes. We are all greatful that we have gotten this far. Have a great weekend
	10/3/2009 1:04:31 PM

	Rosler's
	Hi all! Thanks for the update. When we don't see you, we still think of you and say many prayers for all of you. Nick is amazing ~ you as his family are amazing. We are blessed to know you all of you! We are headed to the doctor's on Friday and Monday to get our Flu shots ~ can't get the whole family in in one day!! When the kids complain ~ I will remind them that this is one extra way we could possibly be helping Nick! I know then there will be no more complaining!! Hugs to all....always just a phone call away! :)
	10/5/2009 12:55:20 PM

	Annette
	Sandy; Several years ago, my father dealt with weight loss after cancer treatments. I just wanted to say that the doctors suggested high protein boost, and some other steps to add weight, such as supplementing him with a carbohydrate powdered drink mix. I know that they sell this at health food stores like Vita Net in Hartville, and probably other natural food stores as well. That way, you don't have to force so much extra food, just supplement with drinks. Maybe this will help Nick. We are still hopeful that your insurance carrier will reconsider such a vital part of Nick's care and treatment. In the meanwhile, just know that we also continue to lift him up to our divine healer. Wishing you all a wonderful evening, filled with rest, refreshment, and more healing! Prayerfully, ~Annette
	10/5/2009 6:30:11 PM

	Mrs. Hilbish
	Glad to hear you are getting stronger and your doctor appointments are going well. I continue to keep you and your family in my prayers.
	10/8/2009 6:25:04 AM

	Annette
	Dear Dan, Sandy, Nick, and Family; I woke up to such beautiful and bright sunshine this morning, and immediately thought of how blessed we are to be able to enjoy such simple things as the changes in the seasons. I hope that Nick is still able to get out enough to enjoy the beauty of the fall leaves in the sunshine. Also hope that the weight issue is beginning to stabalize. I do remember making milkshakes with Carnation instant breakfast and ice cream as a way to add weight for my father. Maybe this is something that will help Nick. I sure do hope that the flu season passes uneventfully for all of you. You are never far from my thoughts, and remain in my daily prayers! Love in Christ, ~Annette
	10/8/2009 8:50:14 AM

	Haley B
	Homecoming was so funn. Im glad to see you were able to go. Tht is probably the most fun you've ever had in a while. Continue to stay well!!! Your still in my prayers.
	10/9/2009 4:12:10 PM

	Gina
	Hi Nick-- I just wanted to let you know that I'm thinking of you and just wanted you to remember to stay positive. I know that it is hard to be isolated all of the time, but flu season will be over before you know it. Stay strong and keep your chin up, cuz. Miss you! Gina
	10/12/2009 11:39:13 AM

	Mark LaForce
	Nick, You are a tough kid. Stay focused and execute the basics so you get healthy sooner than later. School, football and your friends will still be there. I bet you are ready to see leBron & Shaq play together! I hope the Browns don't trade Josh Cribbs. Our Blake (#41) is watching and rooting for you You can do it! Get well. Love 41 Mark, Lin & Johnathan LaForce & family
	10/15/2009 5:47:58 PM

	Lauren Matheny
	Gald to hear that Nick is doing well :D thats wonderfull :D
	10/15/2009 8:36:36 PM

	Annette
	Dear Nick; I was Sooo excited to read that you were able to attend the homecoming. I can imagine how much you must have enjoyed that!! Hang tough, hang on tight to your faith, and know that we are still out here praying for your complete recovery. I know it was hard to miss so much of your freshman year, but I also know great it will be to hear the words complete remission...or totally healed. I know that all those who care about you will still be there when you get back! You have do so much to inspire SOOO many of us out here who are following your progress. You have dealt with this illness with such strength and grace, and you are a living praise to the Lord. Just wanted to send you a little extra boost in the spirits, and a verbal hug. Someday, I hope to actually reach out and give you a real one, to thank you for sharing so much of yourself, yor struggle, and your strength with all of us out here. You are a real blessing. Wishing you a night filled with peaceful sleep, filled with lots of healing and immune system growth, and a warm and wonderful tomorrow. Love in Christ, ~Annette
	10/15/2009 10:56:13 PM

	Annette
	Hello again, Nick! Sorry I haven't written in a while. Lots going on in my home this month. Hope this note finds you happy, healthy, and stronger with every passing day! Just wanted to say I am still praying for you, and also remembering all of your family in my prayers. Hopefully, the flu season isn't affecting anyone in your home. Hope the doctors have finally reconsidered your infusion, and that you are doing well. Remember...what man can't or won't do , God can and will do. Keep the faith, and count down...less time to go than what has already passed behind you!! Sending you my best wishes for a wonderful night, and a bright and beautiful tomorrow!! Love in Christ, ~Annette
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	11/25/2009 8:40:26 PM

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	Dear Dan, Sandy, Nick, and Family; It has been a while since my last note, so I wanted to say that I am still here...still praying,...and still praising the Lord for His answers to prayer! Hoping that this note finds you all happy, healthy, and enjoying the love of family, the joy of the season, the gift of continued health and healing, and the peace that comes with your strength of faith. May you all have a Very Merry Christmas, and a Blessed New Year! My love in Christ, ~Annette
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	Dear Dan, Sandy, Nick, and Family; I know it has been a while since my last note...with all the business of the holiday season. I just wanted to say that I have not stopped thinking of all of you, and that I am continuing the prayer vigil that we started for Nick. I am also continuing to keep each of you in the family in my prayers, and am hoping that you are enjoying all the warmth and love of this Christmas season! It is my most sincere prayer that each of you is blessed with joy, peace, health, and prosperity! My love in Christ, ~Annette
	12/12/2009 9:54:12 PM

	Annette
	Dear Dan, Sandy, Nick, and Family: It has been so quiet these past few weeks, and I have had my own family issues to face...yet I have kept lifting all of you up in prayer, and am hoping that no news is truly good news for all of you. I hope that today finds Nick stronger, and closer to a complete recovery. I was wondering if the medical doctors have finally gotten through to the insurance people about the IVIG, and whether Nick was able to continue with it. I was also hoping to hear that he is still improving. I have also kept Lori in my prayers, and am hoping that all is well with her. I wish all of you a Christmas filled with warmth, love, joy, peace, health, and laughter. You remain in my heart, my thoughts, and my prayers. May you all have a very MERRY CHRISTMAS, and a warm and wonderful NEW YEAR. Prayerfully, ~Annette
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Nick's Big Blog

This blog is for sharing news and any other topic related to Nick and his fight. We will be updating these posts as often as possible, so check back often, and please leave a comment, we would love to hear from you!

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A blog provides commentary or news on a particular subject (ie: Nick Collins). This is an open forum for the fight and progress of Nick Collins' battle against CML. You can leave your comments and questions on posts by clicking the title.

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