1st BMT – Journal Updates DAY +251 – DAY +300

There comes a point in life…

Posted on January 21, 2012 by Nana

Kristina  updated her FB status: “There comes a point in life when fun no longer means clubbing, drinking or being out ’till 4am, or thinking about yourself first! Fun means Disney movies, family dinners, bedtime stories, long cuddles, a messy house, sleeping by 10pm and hearing little voices say “I love you.” Becoming a parent doesn’t change you, it makes you realize that the little people that YOU created deserve the very best of your time! ♥ Repost if you get it.”

 

Kristina updated her FB status: “a quote which says so much about the brave children who battle cancer, histiocytosis and other life-threatening diseases:

“These are the tiny humans. These are children. They believe in magic. They play pretend. There is fairy dust in their IV bags. They hope, and they cross their fingers, and they make wishes, and that makes them more resilient than adults. They recover faster, survive worse. They believe.””

Smile more than you cry, give more than you take and love more than you hate.

Prayer request for Frankie

Posted on January 21, 2012 by Nana

Kristina updated her FB status: “Please say a prayer for Frankie and his family. He is a BMT child and has a fever. That is so scary for a BMT parent. We met them in Seattle when Liam was having his BMT. He is an amazing baby boy!”

To Find Hope…

Posted on January 26, 2012 by Nana
Subject: Kristina updated her status on Facebook.
Date: 1/24/2012 1:04:38 A.M. Pacific Standard Time

“When do you throw in the towel, admit that the lost cause is just that. It comes a point when it becomes too much, when we get too tired to fight any more so we give up. That’s when the real work begins, to find hope where there seems to be absolutely none at all.”

We have come so far…

Posted on January 26, 2012 by Nana

Subject: Kristina updated her status on Facebook.
Date: 1/22/2012 5:42:49 P.M. Pacific Standard Time

 ”We have come so far, others say not enough. However, “Be not afraid of growing slowly, but be afraid of standing still.””

I want HISTIO classed as a cancer!

Posted on January 26, 2012 by Nana

Subject: Kristina updated her status on Facebook.
Date: 1/14/2012 9:37:15 A.M. Pacific Standard Time

”I want HISTIO classed as a cancer! I want it acknowledged that histio patients have the same awful treatments as those with cancer-chemo, steroids, surgery etc, the list is almost endless! I want it reolised that where BMT is the only cure our loved ones (mainly babies) go through absolute hell enduring symptoms most people know nothing about! I want funding and research and I want it NOW!”

Journeys of hope…

Posted on January 26, 2012 by Nana

Subject: Kristina updated her status on Facebook.
Date: 1/14/2012 9:45:33 A.M. Pacific Standard Time

 ”HOPE We are all meant for these journeys of hope. Of tenderness of love. Of doing things we never thought we could do.This is where our courage lives. It is where we find ourselves standing strong and hopefully ready to claim what is ours. ~Unkown”

DAY +243 Liam’s Chimerism Test Results

Posted on January 26, 2012 by Nana

Subject: Kristina updated her status on Facebook.
Date: 1/26/2012 3:44:26 P.M. Pacific Standard Time

Liam’s Chimerism Test Results:

“We just wait and see, and hope for the best.”

DAY+ 243 – 01/10/12        DNA Chimerism Analysis – Blood

(CD3+) T Cell                       72% donor origin (28% host)

(CD33+) Myeloid Cells           12% donor origin (88% host)

(CD56+) NK Cells               35% donor origin (65% host)

(CD19+) B Cells                        11% donor origin (89% host)

 DAY+ 200 – 11/29/11        DNA Chimerism Analysis – Blood

(CD3+) T Cell                       76% donor origin (24% host)

(CD33+) Myeloid Cells           10% donor origin (90% host)

(CD56+) NK Cells               40% donor origin (60% host)

(CD19+) B Cells                        8% donor origin (92% host)

DAY+ 138 – 09/27/11        DNA Chimerism Analysis – Blood

(CD3+) T Cell                       62% donor origin (38% host)

(CD33+) Myeloid Cells           23% donor origin (77% host)

(CD56+) NK Cells               71% donor origin (29% host)

(CD19+) B Cells                      22% donor origin (78% host)

DAY +28 – 06/14/11        DNA Chimerism Analysis

(CD3+) T Cell                       59% donor origin (41% host)

(CD33+) Myeloid Cells           100% donor origin (0% host)

(CD56+) NK Cells               100% donor origin (0% host)

(CD19+) B Cells                      100% donor origin (0% host)

Isolation – Trying to keeping Liam Safe

Posted on January 26, 2012 by Nana

Kristy posted a comment in HLH Survivors on Facebook:

https://www.facebook.com/#!/groups/HLHSurvivors/

As Liam gets closer to 1 year post BMT there are a lot of emotions going through me. I’m wondering if you kept your child in isolation after 1 year post BMT? I’m a parent who has taken isolation very seriously maybe some would say to much but my only concern is keeping Liam safe.

Faith…

Posted on January 27, 2012 by Nana
Subject: updated her status on Facebook.
Date: 1/23/2012 10:44:13 A.M. Pacific Standard Time

“Faith is taking the first step even if you don’t see the whole staircase. -Martin Luther King, Jr.”

Posted on Facebook Group: HLH Family (Survivors & Angels)

Posted on January 30, 2012 by Nana

Posted by: Kelly Claudine Marshposted to

HLH Family (Survivors & Angels) Shared with Public

I am posting this as a general statement, because I am sick to my stomach hearing what doctors are doing in hospitals that don’t have enough experience with HLH. First, when searching for the hospital for transplant, ask the right questions. . . How many HLH cases have you treated? What is your success rate? What are your isolation and precaution standards (gowns, gloves, masks, reverse isolation…)? What factors do you use to you consider the transplant successful? What is the preparative regimen you use? Is it different for marrow, stem cells, or cord blood transplants? How often is engraftement checked (should be weekly until about 6 months post transplant at minimum, then switched to monthly checks). There are so many more. Get informed, don’t believe everything your doctor says. Do your research, ask questions, talk to other families. HLH is a whole different beast and the BMT process is very unique, as well as the treatment afterwards. People are giving misleading information from their doctors because they deal mainly with cancer patients and treat them like any other BMT patient. This is not the case with HLH!!! Holding engraftment numbers in the 90s is absolutely incredible, so are the 70s and 80s. When engraftement numbers start trending downwards steadily and reach the 20s or 30s, that’s when a DLI is considered! HLH CAN be kept at bay with numbers that low. We’ve seen it time and time again from patients that are holding in the 20s with no return of HLH. In a doctor says that anything below 100% donor cells is a failure in an HLH patient is a complete and total idiot, with OBVIOUSLY no experience with HLH. If this happens, get your child to another hospital with lots of HLH experience IMMEDIATELY! When you give DLIs to a patient with high engraftment numbers, the next thing to occur will be graft versus host disease (GVHD) and it will come down with a vengance. Also, DLIs should be given and then wait a period of a month at minimum to wait for engraftment changes. It can take a while for cells to make their way and mature enough to be seen on tests.

Attention All HLH Families By: Kelly Marsh

Posted on January 30, 2012 by Nana
Posted 1 day ago

I am writing this note as an urgent request to reach out to HLH families all over the globe. There are lots of newly diagnosed families with HLH that need our help in making the right decisions for their children and this is my plea to reach out to them because I know they read Hannah’s carepage. If you are an HLH family and you agree with this statement, then please copy and paste this to your caring bridge pages, carepages, blogs, etc. You have the ability to reach so many.

I may get shut out after this, but that’s okay, because I know that I will have been heard. If this message can reach just one family going through HLH, and transplant, and I can possibly save a life, then I will have done my job. I cannot just sit and wait idly by knowing that this is happening.

Remember .. . . “Knowledge is Power”

I am posting this as a general statement, because I am sick to my stomach hearing what doctors are doing in hospitals that don’t have enough experience with HLH. First, when searching for the hospital for transplant, ask the right questions. . .

How many HLH cases have you treated? What is your success rate? What are your isolation and precaution standards (gowns, gloves, masks, reverse isolation)? What factors do you use to you consider the transplant successful? What is the preparative regimen you use? Is it different for marrow, stem cells, or cord blood transplants? How often is engraftement checked (should be weekly until about 6 months post transplant at minimum, then switched to monthly checks). There are so many more.

Get informed, don’t believe everything your doctor says. Do your research, ask questions, talk to other families. HLH is a whole different beast and the BMT process is very unique, as well as the treatment afterwards. People are given misleading information from their doctors because these doctors deal mainly with other disesease (Leukemia, anemias, other cancers, etc.) and they end up treating them like any other BMT patient.

This is not the case with HLH!!!

Holding engraftment numbers in the 90s is absolutely incredible, so are the 70s and 80s. When engraftement numbers start trending downwards steadily and reach the 20s or 30s, that’s when a boost of a Donor Leukocyte Infusion (DLI) is considered! HLH CAN be kept at bay with numbers that low. We’ve seen it time and time again from patients that are holding in the 20s with no return of HLH. If a doctor says that anything below 100% donor cells is a failure in an HLH patient, he/she is a complete and total idiot, with OBVIOUSLY no experience with HLH. If this happens, get your child to another hospital with lots of HLH experience IMMEDIATELY! and I don’t mean wait and see . . . I mean RUN!

When you give DLIs to a patient with high engraftment numbers, the next thing to occur will be graft versus host disease (GVHD) and it will come down with a vengance. It will end up being an overload of cells and the body’s instinct will be to fight. Fighting mild GVH is one thing, but a full on attack can be deadly.

Also, DLIs should be given and then wait a period of a month at minimum to wait for engraftment changes. It can take a while for cells to make their way and mature enough to be seen on tests.

If there are HLH symptoms and these can be checked doing Soluble IL2 testing, this is one of the true markers for HLH, and not necessarily based on Ferritin numbers. Ferritin numbers can be skewed by medications given after transplant like anti-fungal medications. Be vigilant and get educated.

I’m not claiming to be the expert here, so please don’t misunderstand, HOWEVER, I have made sure to stay on top of what’s going on in the HLH world because of my own experiences with Hannah. I have attended the HLH conferences the last two years, and have posted these notes on the HLH Family group on Facebook and here in this forum. I try and stay educated on the process, and keep in touch with HLH families across the globe. I am also very intertwined in the HLH research as well, and yes I have a 3 year HLH survivor. So I guess that makes me a little more ‘in the know’.

I welcome everyone’s comments, both good and bad, and am posting this from my heart because too many children have lost their battle with HLH as it is, but to see them lose their life needlessly to the stupidity of doctors is just too much. :-(

Courage…

Posted on January 30, 2012 by Nana
Subject: Kristina updated her status on Facebook.
Date: 1/30/2012 12:40:41 A.M. Pacific Standard Time

“You will never do anything in this world without courage. It is the greatest quality of the mind next to honor.” -Aristotle”

“the best response to “-at least it’s not cancer”

Posted on February 1, 2012 by Nana
Subject: Kristina updated her status
Date: 1/31/2012 11:49:02 P.M. Pacific Standard Time

“the best response to “-at least it’s not cancer”. -Yes, you’re right! Thank God! It’s just Histiocytosis, also known as the “You’ve got cancer in your autoimmune system”-disease, with no known cure. A rare disease that kills, and there is no research funding for it, because it’s so rare. But hey! At least it’s not Cancer. *We only have to deal with the effects of chemotherapy & the other possible cancers she is now at risk for developing*… Borrowed this from another histio mom!! Too True.”

Another Day

Posted on February 1, 2012 by Kristy

When I write in my blog I write my try emotions in hopes that other family’s who have a child with a life threatening illness will see there not alone in there thoughts.
I haven’t posted in here for a while because I had to take some time to think. There has been so much going on in my world. A mother that is so dear to my heart lost her son. It breaks my heart. I can’t even begin to imagine what she is going through. It sent me into a bit of a panic her son did not loose his battle to HLH but a very rare complication. It kind of shattered my way of thinking. My thoughts had been so focused on HLH and BMT and as long as that is going ok I had my blinders on to anything else taking Liam. The world I live in everyday consists of overwhelming fear and anxiety and I had to realize once again I have no control of the outcome. Before Liam got sick that was a lot easier to swallow. The constant realization of that is a daily experience. There really is no way to sugar coat our journeys. I wish there was.
Liam is doing good but that doesn’t ease my mind. I’m not sure if it ever will. Every little thing that might seem out of the norm for him sends me into panic. There is no way to turn that off. It’s not possible and if someone out there knows how please let me in on the secret. I have faith and hope but as a mom to a sick child it’s always in the back of our minds. Liam is cutting more teeth at least I hope that’s all it is. He is walking trying to run and climbing everything. He leaves nothing untouched I am so thankful and in that sense he is a normal toddler. Noa and Hunter hover over him and praise his every move. It’s truly beautiful to see the love they have for Liam. Ryder and Liam are still best friends even though the have started to have occasional disagreements. They really are partners in crime! If Liam wants a door open Ryder opens it. If Liam wants what Ryder is eating Ryder gives him it. If Liam wants to destroy Ryder’s masterpiece Lego building Ryder hesitates but eventually let’s Liam destroy it. They are so cute together and it warms my heart to be able to see the bond grow so strong between them. I wasn’t sure if Liam would get to be Ryder’s best friend but so far life is good!
I do feel so blessed but at the same time it is hard and everyday is not going to be perfect but it’s another day our family is together. I’m not sure if going through this there really ident enough time to really appreciate everything around you but what I have closest to me I appreciate more than ever. In saying that I mean I hope that we get to let Liam experience more than the house and dr offices. Everyday he wants to go outside and play and it breaks my heart watching him point and cry as I have to shut the door and say we can’t go outside yet. I think as a parent to a BMT child or any child with a life threatening disease it is hard not to be envious of those that have healthy children. The world as we once knew it is not our world now. That life before no longer exists and I’m not sure if it ever will again. I really never struggled with that before because I think I was just focusing on Liam surviving but after 16 months of isolation it’s hard not to. I don’t want parents who have healthy children to feel bad for there children being healthy and I hope no one does. That’s no my intention it’s just part of the emotions I have gone through on this journey. I wish no parent ever had to see there child fight for there life. I have three healthy boys and I am so thankful for that and hopefully soon four.
I wake up every morning and hope for the best. That’s really all you can do.

Love Liams Momma :)

The Selflessness of a Nurse…

Posted on February 6, 2012 by Nana

Kristina updated her Facebook status: 2/3/2012 12:12:04 A.M. Pacific Standard Time

“Nurses are being scorned for being late with medicines by one minute sometimes, yet they are holding their bladder because they don’t have time to use the restroom, starving because they missed lunch, being peed on, puked on, bled on, beat on, yelled at & are missing their family while taking care of yours. They may even be crying for you and praying for you and you not even realize it. In the minute you read this, nurses all over the world are saving lives. Re-post if you love a nurse, are a nurse, or appreciate a nurse!!!”

 DAY +273 Clinic Appointment

Posted on February 9, 2012 by Nana

Kristy’s Update – Feb. 9, 2012

Liam weighed 22lb 11.3oz, 30.4 inches all labs were in the normal range :) he will b off immune suppressant Feb. 16 & starting hydro ween!

DAY +282/83 Done with his Tacrolimus

Posted on February 19, 2012 by Nana

Liam is all done with his Tacrolimus! I hope he will never need it again. We will have to watch him closely for GVHD.

Help Raise Histio Awareness – FEBRUARY 24-25, 2012

Posted on February 20, 2012 by Nana

 Please help raise Histio Awareness

RARE DISEASE DAY PRESS RELEASE (PDF File)

NEXT YEAR’S CAMPAIGN WILL BE HELD IN NYC FROM FEBRUARY 24-25, 2012.  PLEASE CLICK ON THE LINK BELOW FOR DETAILS!

https://www.facebook.com/#!/events/252239901479695/
 http://www.liamslighthousefoundation.org/awareness_campaign.html

Thank you to everyone that went to New York to raise Histio Awareness

Posted on February 26, 2012 by Nana

Kristina updated her FB status: “Thank you to everyone that went to New York to help raise awareness for Histio. It means so much to me! I hope next year I can join you all. I was wonder if anyone knows who was holding Liam’s picture?”

The Today Show

Youtube video – Interview with Dr. Filipovich on the Today Show this morning! Histio Awareness Campaign!!!!

http://youtu.be/SkwIA_1biYw

Interview with Dr. Filipovich on the Today Show this morning! Histio Awareness Campaign!!!!
Dr. Oz – The Today Show – Histio Awareness

   Our Little Warrior Liam

Kristy updated her Facebook status:

HLH is now being diagnosed in young adults and older

:) awareness is so important. It’s not labeled as CANCER but treated with the same meds.

Rare Disease Day – Feb. 29th, 2012

Posted on February 29, 2012 by Nana

Kristy updated her twitter status:

‎2day is Rare Disease Day My son & many others have fought so hard against Histio I hope some1 finds it n there heart 2 help bring awareness

NYC 2012 Histio Awareness Campaign

Video By: Rochelle

Posted on March 1, 2012 by Nana

Not reaching back…

Posted on March 2, 2012 by Nana
Kristina  updated her Facebook status:

“”Not reaching back for what was lost in my yesterday’s. And not reaching for what I hope will be in my tomorrow. But living fully with what is right in front of me. And truly seeing the gift of this moment.” -Lysa TerKeurst.”

Papa bought Liam his first Hickory!

Posted on March 3, 2012 by Nana

DAY +296/69 Liam’s not feeling good today :(

Posted on March 3, 2012 by Nana

So Liam has been very cranky for two days had a little spit up and not eating as much I’m freaking out I hope it’s just teething

 

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