The Birthday Boy…

A blessing each and everyday. We love you Liam to the Moon and Back 5 times…

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September is Histio Awareness

 ”Please help us raise awareness”

To learn more about HLH, go to www.histio.org

These are some photos of Liam before, during and after his 2nd Bone Marrow Transplant for HLH also know as Hemophagocytic Lymphohistiocytosis, a life-threatening immunodeficiency. In patients with primary HLH, cells of the immune system, principally T cells and NK cells, don’t work properly to destroy infected or damaged cells as they should. Because of this, the immune system becomes overstimulated and over activated. The immune system then begins to damage the patient’s own tissues and organs, including the bone marrow, the liver and the brain.

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DAY +231 ~ LIAM’S CHIMERISM TEST RESULTS 2nd BMT

Liam’s engraftment results. The results for his 1st and 2nd Transplant results. Feeling grateful and very blessed that the results are higher at this point compared to his 1st transplant. Please continue to pray that his results will stay stable and continue to go up. 

05/29/13 – Second Transplant ~ NOA’s CELLS
DNA Sorted Chimerism      CD3+      CD33+      CD56+      CD19+
DAY +84 (NOA CELLS)    52%        87%           69%           93%

10/23/13 – Second Transplant ~ NOA’s CELLS
DNA Sorted Chimerism      CD3+      CD33+      CD56+      CD19+
DAY +231 (NOA CELLS)   77%         54%          69%            56%

01/10/12 – First Transplant ~ HUNTER’s CELLS
DNA Sorted Chimerism      CD3+      CD33+      CD56+      CD19+
DAY +243 (Hunters cells)  72%         12%          35%           11%

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DAY +218 – Three years ago today…

DAY +218 ~ Three years ago today Liam was diagnosed with HLH – Hemophagocytic Lymphohistiocytosis. I remember be calling into the conference room with Dr. L and Dr. O and the Chaplin. The fear that was running through my mind still seems like yesterday. I wasn’t sure what they where going to tell us. I was so scared!!! Thinking to myself why is the Chaplin here. I felt so blank, like being in a dream and being so far away. It was so hard to process what the doctors were telling us. That Liam had a serious illness and if they don’t start treatment right away, he could die. Then telling us that the treatment was CHEMO. It was so devastating to think of Liam, at that time only 28 days old and having to be given poisons to keep him alive. Looking back now 3 yrs later, I feel so blessed  and so thankful to GOD for the doctors and nurses for doing everything to save Liam‘s life. There are now words to express how grateful we are. And to all our family, friends and people we have never met for all the love and support you have given us through this journey. Your love and kindness have helped us through each day. We are so very thankful for each and everyone who has been there for us.

Please share Liam’s story with others and help raise awareness about HLH. You could save someone’s live. This disease is fatal if not treated. It needs more research in hope of finding a cure. There is now government funding for research it is all done by private donations. To learn more about HLH, the signs and symptoms click the link http://liamsjourney.com/wordpress/what-is-hlhfhl/

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DAY +195 Clinic Appointment

DAY +195 ~ Laim had an appointment in Seattle yesterday. His labs looked good but his liver is still slightly elevated (ALT). He was scheduled to have a bone marrow biopsy today. But after discussing it with Dr. C we both agreed that doing the bone marrow biopsy was unnecessary at this time… I was so relieved, I hate it when they have to put Liam out in my arms. I don’t know if ill ever get used to the feeling. They will be checking his chimerisms through blood tests and hopefully only good news. Please pray that Noa’s cells are growing, and for strength.

Sometimes I wonder if this storm will ever end…

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The Birthday Boy…

His smile says it all, he LOVES his new tractor from Mommy, Nana and Papa.

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LIAM’S CHIMERISM TEST RESULTS 2nd BMT – DAY +28, +42, +84, +114, +127, +156

Chimerism Whole Bone Marrow Biopsy

DAY +28     04/03/2013     100% donor Noa     0% Liam     0% donor Hunter

DAY +84     05/29/2013     79% donor Noa       21% Liam   0% donor Hunter

——————————————————————————————-

DNA Sorted Chimerism Peripheral Blood

(CD3+) T Cell, (CD33+) Myeloid Cells, (CD56+) NK Cells, (CD19+) B Cells

DAY +28 – APRIL 03, 2013

DNA Sorted Chimerism      CD3+  CD33+    CD56+    CD19+

DAY +28 (NOA CELLS)       42%    100%     48%       90%

DAY +28 (Hunter’s Cells)   16%      0%        0%        0%

DAY +28 (LIAM’S CELLS)   42%      0%       52%       10%

 DAY +42 – APRIL 17, 2013

DNA Sorted Chimerism      CD3+    CD33+    CD56+    CD19+

DAY +42 (NOA CELLS)      41%     100%      50%       N/T

DAY +42 (Hunter’s Cells)   10%     0%          0%        N/T

DAY +42 (LIAM’S CELLS)   49%     0%         50%       N/T

*N/T = NOT TESTED

DAY +84 – MAY 29, 2013

DNA Sorted Chimerism      CD3+   CD33+    CD56+   CD19+

DAY +84 (NOA CELLS)      52%     87%        69%      93%

DAY +84 (Hunter’s Cells)   4%      0%          0%        0%

DAY +84 (LIAM’S CELLS)   44%    13%        31%       7%

DAY +114 – June 28, 2013

DNA Sorted Chimerism      CD3+    CD33+    CD56+

DAY +114 (NOA’s Cells)     57%     N/T       75%

DAY +127 – July 11, 2013

DNA Sorted Chimerism      CD3+   CD33+    CD56+

DAY +127 (NOA’s Cells)     57%     78%       71%

DAY +156 – August 8, 2013

DNA Sorted Chimerism      CD3+   CD33+    CD56+

DAY +156 (NOA’s Cells)     63%     71%       74%

——————————————————————————————-

Chimerism Whole Peripheral Blood – % OF NOA’S CELLS

04/23/13      85%

05/03/13      94%

05/10/13     81%

05/17/13     77%

05/29/13     79%

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2nd BMT – DAY +153 update – 5 months post Transplant

DAY +153 update ~ It’s been awhile since the last update. Liam is doing good, today he is 5 months post transplant. He had 2 appointments last week. He had to have an IVG infusion on last Monday, to help give his immune system a boost. His level was lower than they like it to be at this point after transplant. His liver levels have been better so that was a good thing. His magnesium level has been holding in the normal range, and he is off the IV magnesium/ fluids at night  Not sure how much longer he will need his PIC line. It is has to be flushed and hep locked twice a day. It will be a great relief when he doesn’t need it anymore. He really is so tired of all of it. Some days he doesn’t mind and some days he is really not wanting it done at all. It is still a struggle getting him to take all of his meds. But we just take it one day at a time. They will be testing his engraftment at his next appointment. Really hope we get some good news, and that Noa’s cells are still going up. He has had a rash off and on this last week. First it was on his chest, than on the back of his neck. They have me putting a cream on it, seems to help. It is so hard for him to watch his brothers go outside and play. He wants to go out so bad. But they think he might be having skin Graft Verus Host Disease. So he needs to be very careful and NO SUN exposure. We have to keep the blinds and curtains closed during the sunny time of day. It will be so great when he can play outside like a normal little boy. Thank you so much for following Liam’s journey and for all your love and prayers. Please continue to pray for Noa’s cell to keep growing.

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2nd BMT – DAY +132 ~ Liam is doing good.

DAY +132 ~ Liam is doing good.  It has been a couple of weeks since I last updated. Things have been good. Just trying to get back to some sense of normal. Trying to manage everything, somedays are easier than others. But things are good  The heat wave was a bit much. We had to get a new AC unit, this one is big enough to cool the whole house. The units works for up to 700 sq ft., the home is 800. But does a god job, the bedrooms don’t get as cool. But it is good enough. We have appointments this week for more chimerism’s. Praying for Noa’s cells to continue to go up. Most of his labs have been good. His liver is up a little, but they said not to worry. But of course that is impossible to not to worry. I don’t know if I will every stop worrying. His GI is still doing good, except on Monday and Tuesday. He takes Sulfamethoxazole, it seems to loosen things up. Last week was a bit eventful, do you notice anything missing when you look at the photo of Liam. He was playing and somehow he caught his NG tube and it came up. All I heard Liam say is “I Puke”, when I turned around to look his tube was half way out. He was beside himself, poor little guy tried to put it back in. They haven’t put a new one back in. He has been doing good about taking his meds orally. Some days it is easier, but some days it is harder  It is like one of the medicine commercials with the little boy that runs and hides because the medicine is awful tasting. You really feel bad for him, he has had to take so many medicines for so long. Praying for the day that he is all better and doesn’t have to take any meds any more. We got the results back on his last Chimerism’s last week. They are still slowly trending up  they didn’t run all 4 tests, they just did 2.Thanks so much for all your prayers.

DNA Sorted Chimerism Analysis ~ June 28, 2013

Post Transplant Peripheral Blood

CD3+ t-cells ~ 57%, was 52% donor Noa
CD56+ NK cells ~ 75%, was 69% donor Noa

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2nd BMT – DAY +110 – Coming Home :)

 Things have been so busy the last 2 weeks. We had an appointment June 4th, at that appointment they said that Liam wouldn’t be going home at Day +100 because of the gut GVHD. Than the next appointment they said we would be discharge to go home the next week, June 11th. This was after they had reviewed all of the data from his Day +84 testing. Liam’s gut GVHD had also continued to improve. It was great news, but the reality of leave the safety net of being in Seattle with the BMT doctors right their was very overwhelming. But we were very excited that they felt confident they Liam was doing well enough to go home. We had a week to get everything ready to go. I was so thankful, my Aunt Tami hired a cleaning company to clean the Ronald McDonald Apartment. That was a huge relief, one less thing to worry about. The last week was so crazy. You don’t realize how much stuff you have until you start packing. We had been in Seattle since Liam’s HLH flare the end of Dec. 2012. I had to go home the weekend before we left to get the house ready, and I took a car load of stuff home. My mom took a load of stuff home. Than my dad took a car load of things home. I thought that the rest would all fit in the car going home. The morning we were leaving as everything was being loaded in the car I was about to panic. I had Noa and Hunter came up to Seattle for the journey HOME, which really limited the space in the car. But I was so glad to have them there  Every space in the car was filled. It was hilarious, it will be a fun memory for us to look back on. We had a good laugh about it at the time. We got home on June 12th. It is so good to be home, and all the brothers together. Liam is doing good. His lab are all good. They did a full sorted chimerism blood test on his graft last week. PLEASE PRAY that Noa’s cells are continuing to go up. Thank you for your support, prayers and love.

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