Liam's HLH Journey

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!!!”

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 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.”

Posted by: Kelly Claudine Marsh

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.