Thing have been so busy, I haven’t had a chance to update Liam’s blog. I will be filling in the gap when I get a moment. Plus I will be adding some homecoming photos. It is so great having Liam home. He is such a happy baby. with a beautiful smile. He is trying to cut another tooth. He is so close to trying to walk. Last couple of days he is standing for a longer peroid of time. You can tell he is really thinking about it. Yesterday he said DaDa for the first time at his clinic appointment. Daddy was very excited about that. Now he says mom, nana and dada. Still waiting for the CMV test to come back. Kristy got a call on Saturday from the Portland Clinic. They said the lab on Thursday from the Seattle Clinic for the CMV needed to done again. The test was done on Saturday in Portland, but we still don’t have the results back. Will post update on test when we have them.
Kristy got a call yesterday from the Portland Clinic. They said the CMV test came back negative, that was a huge relief. But his Tacrolimus level was up. They have a clinic appointment on Thursday.
Kristina Smith-8/26/11 Liam’s appointment went good. His numbers still look great CMV came back negative twice now so that is encouraging. He may of fought it off himself or it could of been the test was wrong. Either way good news. He is loving being with his big brothers and is standing on his own now. Still into everything but more entertained by brothers. Noa got a stomach bug so he is now at my mom and dads house. I’m hoping that no one else gets it.
DAY +110 – Tacro level at 10
Kristy’s Facebook Post – August 30, 2011
Clinic appointment today, Liam is 17lbs 15oz. Waiting for labs. His tacro level was 10 last time it needs to be between 5 and 8 so hoping we get this figured out.
DAY +116 Skin Rash
Liam woke up this morning with a rash on his forehead and on his back. Kristy called the clinic they had her check his temp. He didn’t have a temperature, we were very relieved. He doesn’t go to clinic until tomorrow. So we wait…
Liam’s Skin Rash Photos
Liam woke up with this rash this morning……
Click on photos below to enlarge
We have 2 come back n the morning for a skin biopsy It is spreading & they 2 think it is GVHD I just hope the skin is the only effected area
DAY +117 Clinic appt. today-Skin Rash
Kristy’s Twitter updates: Liam woke up with a rash all over his back & forehead. I’m hoping it is not GVHD but I think it is.
We have an appointment today hopefully we will get the rash figured out. Keep my little warrior in you prayers.
We have 2 come back n the morning for a skin biopsy It is spreading & they 2 think it is GVHD I just hope the skin is the only effected area.
It’s not fare that any child should have to fight so hard. I often wonder why but I will never get the answer nor will I ever understand.
If God could just take all this away……
Today we went to the doctor knowing that the rash could be GVHD but the hopes that maybe it was just nothing seems far fetched. Tomorrow we go in at 9:00am so I can hold my baby boy in my arms why they take a piece of his skin. At times I wonder how much more I can take and what Liam must be feeling. The pain never seems to end along with the struggle. I find my self taking deep breaths all day long and trying to keep myself calm. Everyday I wake up I hope that Liam will be o.k.. It seems just as you get your feet under you yet another unknown path comes along. I try to just walk without struggle but that’s not possible. If I could just take Liam’s place I would. It’s the hardest thing for a mother to have to sit back and know a bandage, kiss, hug, or time will not heel this. I know this is a bump in this very long road but I hope the end is felled with happiness and relief.
Liam’s labs look good and he is still gaining weight. All good things to focus on. It is a struggle to keep your chin up. But what else can I do.
Thank you for all the live and support. I don’t know what we would do without it.
For parents going through a BMT Liam’s rash started on his forehead it was red and dry. It looked like eczema but then it started to peel like a sun burn would. Then it spread to his back it came in patches on Liam. Now it is moving to his arms and legs. You can also see little red spots by it. It does feel rough to the touch and very dry. Any rash should be followed up by a physician and most likely should have a skin biopsy done. If it is GVHD they should start the child on topical steroids and check for GVHD in other parts of the body.
Kristy’s FB comment: Kristina Smith GVHD is were Liam’s and Hunter’s cells are fighting it out. It’s like a war going on inside Liam’s body. It starts with a rash and can go to other places in his body.
Kristy’s Twitter Update: We still don’t know the results from the skin biopsy but today his rash looks a little better. That was not fun and he has stitches
DAY +120 Liam is one year old tomorrow
We feel so blessed that Liam is turning ONE tomorrow. I will post some pics when I can.
We are waiting for the skin biopsy to come back. Praying that it is not GVHD… Their is such a fine line with GVHD, if they see none then the worry that something is wrong. And if they see GVHD it indicates that donor and host cells are fighting. I seen Liam this morning the rash is very faint today.
He has a clinic appointment today in Portland, will try to post updates as I get more info from Kristy.
Kristy got a call yesterday that the last NK function test done is still showing low. I’m not sure what that means. So many unknowns thru this process. It is so hard at times. Please keep Liam & Family in you daily prayers.
DAY +121 Happy Birthday Liam
Kristy’s twitter update: Happy 1st Birthday to my little warrior Liam. You’ve fought so hard and your strength inspires me. Mommy loves you & feels so blessed.
Skin Biopsy Results
Liams skin biopsy showed no sign of GVHD. I am so grateful that he does not have to fight against that right now.
Liam’s Birthday Photos
DAY +124 Tacro level low
Kristy’s Twitter update – September 13, 2011: Liam was 18lbs 10oz and they are going to leave his NG tube out until Friday to see how he does
Tacro level (3) is low again not sure why.
Liam and his brother Hunter (Donor) and no NG tube!
Kristy’s Twitter Update: Jared went back 2 work 2day. It is so hard doing this on my own and the thought of Jared getting sick is now a reality. Now we rely on hope
Kristy’s Twitter Updates: Liam was 18lbs 12.9oz 2day we will continue 2 c how he does without the NG his tacro level is leveling out so we might get 2 go 2 1xweek
DAY +134 Liam took 3 Steps
Kristy’s Twitter Update: September 23, 2011
Liam was 19lbs 1oz he is still off NG feeds & will go to 1 a week if his labs look good. Another blessed day god is good & life is good
Liam is now saying papa. He is still doing well considering he had a BMT. His strength inspires me. Never say never
I am truly blessed…
I am truly blessed. I have nothing to complain about.
As I was laying Liam down to sleep I started to think about how he must of felt at 28 days old. His life had just begun but he would now have to fight for it. I thought he must of been so scared there was no way to tell him what was going on instead you just had to hold him and hope that was comforted. He was so brave and strong. He was so lucky to have survived that HLH flare.
Then Liam now faced another hard road he would be getting chemo (that’s a hard word for a mother to take in). I have no way of knowing how that made him feel. Im sure it was not very good but he kept on smiling and fighting. He also faced the risk of getting sick and it being very serious due to his very low counts. Steroids were also part of his many medicines that would be given to keep Liam alive. They are pure torture Liam was beside himself. There was no way to comfort him. I again can’t imagine how he must of felt. His first round of treatment lasted 8 weeks. Which ended November 28, 2010. What a relief that was. I began to grasp the thought that he was cured. Hesitant to that thought I held my breath.
December 26, 2010 Liam started throwing up. We panicked and rushed him to the hospital. They did a number of tests and kept him over night for observation and thought it was just a bug and sent us home. The thought of it being a relapse of HLH haunted me. 3 days latter he starts throwing up again. This time we kept him home and just watched Liam very closely. I could not shake the feeling deep in my soul. Two days later Liam spikes a fever the doctors are still not convinced that it is a flare of HLH. I insisted that Liam be seen in clinic. By this time my baby boy was getting sicker quickly. I felt so helpless and at the same time realizing how much we have no control over what god has planned for us. They admitted Liam to the hospital and due to the genetic testing not being back yet they were not going to start treatment until the did a bone marrow biopsy and blood work to prove it was HLH again. I felt like I was in a sound proof room screaming at the top of my lungs. I knew Liams HLH was back I felt it in my soul. The thought of him lying there getting sicker by the second was pushing me to the edge. I convinced them to at least start the steroids. The thing is they cannot start treatment with out evidence which is great but when you know your child has HLH the quicker they start treatment the better the results. I would look at Liam and not know what to feel. I knew that HLH could take him from me at anytime. I just wanted to fix it or take his place. I also felt like he would look at me like why are you not helping this pain go away? He must of been so scared. His fever continued for a few days and I prayed.
Liam now faces another round of chemo and steroids he is only four months old. We also now are struck with the reality that Liam would need a life saving bone marrow transplant. There is no way to prepare yourself for that kind of news.
We also faced the possibility of our other three boys carrying the same gene abnormalities as Liam. Which would mean they too would need a bone marrow transplant. They did the genetic testing on the boys and they all have one HLH gene but Liam has two. So they should never be effected by HLH.
Liam got a Hickman put in for transplant I had to hand my four month old over to a stranger and watch them walk away through doors that I could not follow. I hoped Liam knew I loved him more than words could explain.
Transplant. I watched them make Liam so sick. Liam never stopped fighting and inspiring. There are not words to explain what he went through. I’m just thankful he will not remember it. We will but that is nothing compared to what he has been through. I never thought someone could make it through something like this. My little warrior has and so many others. I am so humbled by anyone that fights HLH. They have a inner strength that leaves you in awe. It makes you realize anything is possible. There is nothing out of your reach.
DAY +138 Follow-up Appt. in Seattle/SCCA
Kristy’s Twitter Update: September 27, 2011
- We are on our way to Seattle please keep us in your prayers for only positive results.
- We are in Seattle. It’s nice weather. Wishing we could hit the Mt biking trails.
Seattle Check up
As we started our journey to Seattle for Liams check up my stomach was full of butterflies. The unknown is so hard to except. We arrived in Seattle to beautiful weather and it felt as though we never left. We got to see the amazing people who have walked this journey with us. To them I am forever thankful. They were so excited to see Liam and how well he is doing. We met withe nutritionist and she was very pleased with Liams growth and weight gain. He is in the 95% for were they would like him to be so we are almost there! They were also amazed that he did not have his NG tube. We met with Dr. Carpenter and it was great he said it does not look like Liam has had a BMT. The Dr checked Liam out and had nothing bad to say. We talked about starting the ween of tacrolimus he wants to wait and get the results of his graft test back first. If they look good then we can start the ween. He also discussed flu shots for Liam and they want Liam to get a flu shot at 6 months post BMT. It scares me to get him a flu shot but it’s something we have to do. We all have to get one too. I feel like we live each day in fear that Liam will come down with something so the best thing to do is protect all of us the best we can. They also informed us that when you get a flu shot for the first time you need to have another one a month later.
We should know the results of his blood tests by the end of the week.
They also said that his last ferritin level that was 12 was unheard of from a post BMT patient 4 months so that was very encouraging.
- The apt went good. They just kept saying you’d never know Liam has had a BMT. They were very impressed. Now we just wait 4 the results.
- Liam learned how to sign all done. It is so cute. He also fed himself a bottle for the first time:)
DAY +142 First Family Walk together
DAY +150 One Year ago…
One year ago Liam was fighting for his life, with an inspiring will to survive.
Looking back at the last year it seems like such a blur. It has been a roller coaster of emotions, from extreme lows to extreme highs. This day takes you back to those moments in time that will forever be etched in my mind. I don’t know that I have still fully excepted it, at times praying this was just a NIGHTMARE… hoping to wake up from this, and that it would all be gone.
The visions in my mind of Liam laying their so helpless and feeling so helpless, with so many machines helping to keep him alive. He had to be put him on a ventilator, kidney dialyses, IV fluids, their was a wall of pumps. Those visions are a painful reminder of how far Liam has come.
We will be forever grateful to Legacy SC Hospital and Legacy Emauel Childrens Hospital. To all the doctors, nurses, all the medical staff at both hospitals, the ER Dr., Dr. G and the nurse that care for him until he was transported to PICU, the transport team, Dr. L, all the PICU medical staff, Dr. O and her team of doctors. We would also like to give a big thanks to the nurse that suggested that it looked like a case that she had care for with HLH (also known as Hemophagocytic lymphohistiocytosis). I wish that someday we can meet her. God blessed Liam with a medical staff that never gave up.
Thank you to all our family, friends, and our community for all the love, support, words of encouragement and endless prayers for Liam and our Family. Thank you so much for being their to keep us going.
We all feel so blessed that Liam has made it to this day, never taking it for granted. Thank you God for our many blessings.
It is so amazing that Liam is now on DAY +150. It is still a very stressful, and we are taking ONE DAY AT A TIME. Liam is doing great, he loves being all together with his brothers. Liam will be in isolation until May 2012. We have lived that way since Liam got sick. It has been a sacrifice that has been so worth it. I don’t think you can be safe enough, but at least try to do the best you can. It is really hard for me personally, you want to keep him in a protective bubble. You feel that with a child that can not speak for himself or even understand the seriousness of all of this, we have to do everything in our power to get him thru this and keep him safe. Our lifes come last and Liam comes first, he has been thru to much to take any chances.
Please continue to keep Liam & all of us in your prayers.
We Love you so much Little Warrior,
Love , Nana & Papa
One year ago today Liam was diagnosed with HLH. The doctors and nurses worked endlessly to save Liam’s life and they did. If Liam would of went undiagnosed he would not be here now. I will never forget those that saved my baby. With a diagnoses came devastating news he would start his long journey down a road full of a lot of unknown. I’ve never been so scared. His treatment would be chemo and steroids and many other medications along with antibiotics. I never wanted to see my baby go down that road but it has saved his life. It got him to transplant and through transplant. Sometimes in life there are things you don’t want to do but the journey makes us stronger. I am so humbled by the love and support we as a family have received. It’s made this journey easier knowing so many care. My baby boy is alive today because he was diagnosed. I hope to help bring awareness to this awful disease so that every child has a fighting chance against HLH.
Please sign up for the run on October 30, 2011. We are going to continue to do it each year in hopes that it will continue to grow and bring awareness.
Liam’s first ride on the four wheeler
Kristina Smith posted in Liam’s Journey – HLH Warrior. 3:23pm Oct 12
First ride on the four wheeler