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Where's The Cure?

HLH..what a terrible disease, but my little mans such a dang trooper!!

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Where's The Cure? | histiomommy.blogspot.com Reviews

https://histiomommy.blogspot.com

HLH..what a terrible disease, but my little mans such a dang trooper!!

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1

Where's The Cure?: May 2012

http://histiomommy.blogspot.com/2012_05_01_archive.html

HLHwhat a terrible disease, but my little mans such a dang trooper! Sunday, May 13, 2012. May 13, 2012 (Day 6). I first want to wish each Mama out there Happy Mothers Day! I want to apologize for not blogging lately, but it's been a crazy few days! Cole's ANC for the past few days has been at 0 so now we're just in a waiting game for his levels to start coming up.Lord this is definitely in your hands! I know I say this all the time, but ya'll God is so good! Tuesday, May 8, 2012. Please take a second, wh...

2

Where's The Cure?: April 30th (Day -7)

http://histiomommy.blogspot.com/2012/04/april-30th-day-7.html

HLHwhat a terrible disease, but my little mans such a dang trooper! Monday, April 30, 2012. April 30th (Day -7). From now on my posts will be as follow (Day -7 which means seven days til transplant and then once its transplant day it will day Day 0 then from there it will be Day 1 as so forth). He knew I needed to hear that! Cole has received his chemo for the day and is acting like his normal self still. I can only pray that this is an indication of what's to come! Subscribe to: Post Comments (Atom).

3

Where's The Cure?: January 2012

http://histiomommy.blogspot.com/2012_01_01_archive.html

HLHwhat a terrible disease, but my little mans such a dang trooper! Thursday, January 26, 2012. Dr Apt. January 24, 2012. These dr. apts. seem never ending.do any of you histio mommys feel the same way? His BP of course was high (SHOCKER) so they debated uping his BP medicine, which they didn't thankfully. His levels came back wonderfully (YAY! Well back to the birthday party.I hope we have a great turnout so that little man can have some fun before he's stuck in a hospital room for awhile! We'll be spen...

4

Where's The Cure?: May 13, 2012 (Day +6)

http://histiomommy.blogspot.com/2012/05/may-13-2012-day-6.html

HLHwhat a terrible disease, but my little mans such a dang trooper! Sunday, May 13, 2012. May 13, 2012 (Day 6). I first want to wish each Mama out there Happy Mothers Day! I want to apologize for not blogging lately, but it's been a crazy few days! Cole's ANC for the past few days has been at 0 so now we're just in a waiting game for his levels to start coming up.Lord this is definitely in your hands! I know I say this all the time, but ya'll God is so good! Subscribe to: Post Comments (Atom).

5

Where's The Cure?: May 1, 2012 (Day -6)

http://histiomommy.blogspot.com/2012/05/may-1-2012-day-6.html

HLHwhat a terrible disease, but my little mans such a dang trooper! Tuesday, May 1, 2012. May 1, 2012 (Day -6). Holy moly what a day! I thought today was going great.woke up to nothing, but positive things from Cole's nurses. Then he got his chemo with no hiccups.then the day took a turn! I hate this line with a passion. He's had nothing but problems with it since day 1! I don't mean to sound so negative, but I'm so mad.I just don't understand why.but I don't think I ever will. Why Cole? This room is sta...

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miabellegillier.blogspot.com miabellegillier.blogspot.com

miabelle and noelie: 9/29/13 - 10/6/13

http://miabellegillier.blogspot.com/2013_09_29_archive.html

Friday, October 4, 2013. Day 700/700: May the yellow jersey go to all the HLH Angels and Warriors out there. Yellow Jersey is defined by my friend Wiki as, in the Tour de France (most recognized cycling event in the world), " the leader of the general classification wears the. Http:/ en.wikipedia.org/wiki/Yellow jersey. Courtesy of the Matthew and Andrew Akin Foundation. But despite these limitations at least one of us made it to the finish line. Oops! Bolt (Justin) leads the pack to the finish line.

miabellegillier.blogspot.com miabellegillier.blogspot.com

miabelle and noelie: Doing Good feels Great: The highpoint of the Hope Gala of the Icla Da Silva Foundation

http://miabellegillier.blogspot.com/2013/11/doing-good-feels-great-highpoint-of.html

Thursday, November 14, 2013. Doing Good feels Great: The highpoint of the Hope Gala of the Icla Da Silva Foundation. Now that I have "recovered" from the HLH700 of the Akin Foundation (crazy! The Ronald McDonald Gala and the fun Hope Gala of the Icla Da Silva Foundation I wanted to get back to my blog which I have shamefully ignored. These past months have been amazing, not just because sitting on a saddle for 7 hours is such good feeling (try it! We even got a tax deduction, what more do you want? Http:...

miabellegillier.blogspot.com miabellegillier.blogspot.com

miabelle and noelie: History

http://miabellegillier.blogspot.com/p/medical-history.html

This was the EMERGENCY ROOM. Shouldn't it go without saying that these were emergent cases? It was at that moment that Vanessa contacted me in NY and had me book a flight home for her and Miabelle. The doctors assured us that she would be well monitored, but that unfortunately, given the latest findings, it was a necessary evil. Additional updates will be posted in the Daily Blogs. More to come. Subscribe to: Posts (Atom). A Good Feeling Must See. Get an email update when blog is updated. Day 3 120 Miles...

miabellegillier.blogspot.com miabellegillier.blogspot.com

miabelle and noelie: 8/24/14 - 8/31/14

http://miabellegillier.blogspot.com/2014_08_24_archive.html

Thursday, August 28, 2014. Say something, I'm giving up on you. And I am sorry I couldn't get to you." I am not sure what to say. it has been so long. Are you still there? Not sure where my inspiration or energy went. Did I lose my mojo? Have the good times returned? Has the despair been lifted? Just look at Miabelle's face, so content to be held by Libby. This is what we hope for: knees are growth related and you are now at 100% donor cells. This is what we want to avoid: knees are indeed an issue a...

miabellegillier.blogspot.com miabellegillier.blogspot.com

miabelle and noelie: 11/10/13 - 11/17/13

http://miabellegillier.blogspot.com/2013_11_10_archive.html

Thursday, November 14, 2013. Doing Good feels Great: The highpoint of the Hope Gala of the Icla Da Silva Foundation. Now that I have "recovered" from the HLH700 of the Akin Foundation (crazy! The Ronald McDonald Gala and the fun Hope Gala of the Icla Da Silva Foundation I wanted to get back to my blog which I have shamefully ignored. These past months have been amazing, not just because sitting on a saddle for 7 hours is such good feeling (try it! We even got a tax deduction, what more do you want? Http:...

miabellegillier.blogspot.com miabellegillier.blogspot.com

miabelle and noelie: Day 700/700: May the yellow jersey go to all the HLH Angels and Warriors out there

http://miabellegillier.blogspot.com/2013/10/day-700700-may-yellow-jersey-go-to-all.html

Friday, October 4, 2013. Day 700/700: May the yellow jersey go to all the HLH Angels and Warriors out there. Yellow Jersey is defined by my friend Wiki as, in the Tour de France (most recognized cycling event in the world), " the leader of the general classification wears the. Http:/ en.wikipedia.org/wiki/Yellow jersey. Courtesy of the Matthew and Andrew Akin Foundation. But despite these limitations at least one of us made it to the finish line. Oops! Bolt (Justin) leads the pack to the finish line.

miabellegillier.blogspot.com miabellegillier.blogspot.com

miabelle and noelie: Say Something...

http://miabellegillier.blogspot.com/2014/08/say-something.html

Thursday, August 28, 2014. Say something, I'm giving up on you. And I am sorry I couldn't get to you." I am not sure what to say. it has been so long. Are you still there? Not sure where my inspiration or energy went. Did I lose my mojo? Have the good times returned? Has the despair been lifted? Just look at Miabelle's face, so content to be held by Libby. This is what we hope for: knees are growth related and you are now at 100% donor cells. This is what we want to avoid: knees are indeed an issue a...

miabellegillier.blogspot.com miabellegillier.blogspot.com

miabelle and noelie: Day 5 Miles 70: Dedicated to Anna Conger

http://miabellegillier.blogspot.com/2013/10/day-5-miles-70-dedicated-to-anna-conger.html

Thursday, October 3, 2013. Day 5 Miles 70: Dedicated to Anna Conger. Courtesy of the Matthew and Andrew Akin Foundation. For the dedication video please click: http:/ youtu.be/a7b073dw1x0. The day started with a deadline: 70 miles by 2pm. Why you may ask? Because we are a bunch of crazy people, in case you had not figured that out by now. A great honor I accepted with much appreciation. Dilemma, I now had two things I truly wanted to commit to at the same time! And he was right. We all departed together ...

miabellegillier.blogspot.com miabellegillier.blogspot.com

miabelle and noelie: HLH/FLH?

http://miabellegillier.blogspot.com/p/what-is-hlhflh.html

HLH stands for Hemophagocytic Lymphohistiocytosis and is a rare disorder mainly affecting children at an early age. The illness consists of the malfunctioning of the hystiocyte, one of the primary cells to fight infections. Bone marrow produces these cells that then travel throughout the body to fight infections and destroy foreign material. 2) Secondary HLH is none genetic and presents itself when the body's immune system goes into overdrive following a major infection. Secondary HLH is treated with...

miabellegillier.blogspot.com miabellegillier.blogspot.com

miabelle and noelie: War on Germs

http://miabellegillier.blogspot.com/p/the-following-piece-was-written-during.html

T becomes second nature. If you have OCD welcome to Paradise! We are extreme according to some but when your child is on death row nothing is extreme in our opinion as long as you feel good about what you decide to do and you as a the parent feel that you are making a difference in the War on Germs. Some people will judge, but don't let that discourage you in any way because it is not for them to judge. If you would like more information about each group I recommend Wikipedia, although the part on Fungi ...

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Where's The Cure?

HLHwhat a terrible disease, but my little mans such a dang trooper! Sunday, May 13, 2012. May 13, 2012 (Day 6). I first want to wish each Mama out there Happy Mothers Day! I want to apologize for not blogging lately, but it's been a crazy few days! Cole's ANC for the past few days has been at 0 so now we're just in a waiting game for his levels to start coming up.Lord this is definitely in your hands! I know I say this all the time, but ya'll God is so good! Tuesday, May 8, 2012. Please take a second, wh...

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