DAY +301/64 Clinic Appointment today
Liam’s CBC labs came back in the normal range! Thank you for the prayers. We discussed his hydro ween and they realized that he needs his adrenal function tested so we go see endocrine on march 14 then they should schedule the test. They were supposed to get a magnesium level but the blood clotted and they would of had to poke him again so we will leave Liam on the same dose of magnesium for now…. They will check it at his next appointment. We also discussed what isolation will mean at a year post BMT for Liam and they said he needs to be off his Tacrolimus for at least 6 months before we can take him around people. So that would be in August but that’s ok because it’s worth it. Liam was 23lbs. 2oz.. The doctor appointments are getting a lot more changeling because Liam does not understand why I won’t let him down so he can play. So he pretty much screamed the whole time. There is no reasoning with a 17 month old. I feel so bad
Please say a prayer for Brent and his Family…
Please say a prayer for a little boy named Brent he has fought so hard against Mito & HLH his mother posted there is nothing more they can do they are taking him out of the PICU and moving him to his floor to be surrounded by family and love. They need a miracle.
To read Brent story click on the link:http://beautifulchaotic4.blogspot.com/2012/03/catch-up-on-our-journey-part-1-brent.html
Brent lost his battle with HLH…
Please keep his family in your prayers. He fought like a true warrior. Our heart are heavy with sorrow. Rest in peace little buddy…
DAY +303/62 – Happy 18 months old to Liam today
Liam is 18 months old today! He is such an inspiration to me and has taught us all miracles are possible. Mommy loves you so much
Hannah’s donor: What it means to be a donor
Kelly Claudine Marsh - Here is the part of the piece I taped while the tv station was here today filming the interview. It’s the part with Patrick & Hannah. The sound wasn’t that good because I was trying to stay out of the view of the camera, so you will have to turn the volume up. He is nothing short of wonderful! ♥ http://youtu.be/zdiUGPmQShI
This amazing young man is named Patrick. He was our daughter’s donor and truly an angel in disguise. Here he shares his experience with all of us and explain…
8 years ago today I was hit by a drunk driver head on
“8 years ago today I was hit by a drunk driver head on. I was taken to the hospital were they stitched me back up dug the glass out of my face and mouth and sent me home because there wasn’t enough beds for them to keep me. 10 days later I collapsed on my floor at home alone I was bleeding to death internally. My grandma found me passed out on the floor. I was rushed to the hospital were they removed my spleen. I was almost taken from my two older boys that day. So before you only think of yourself and get in a car after you have been drinking think about how it might effect someone else’s life. Don’t drink and drive.”
DAY +315/50 – I am so thankful we are in isolation!
“I am so thankful we are in isolation! It seems like everyone on Facebook is sick or is getting over being sick. I hope we don’t get it. I hope everyone feels better.”
Kristy’s Twitter Updates – March 12 – 26, 2012
10:03 AM – 12 Mar 2012 - Liam is 10 months post bone marrow transplant today!
10:48 PM – 12 Mar 2012 - Liam looked at me pointed his finger and said brat! As plain as day and kept saying it
1:56 PM – 14 Mar 2012 - Liam’s Indocrinology apt went good! They said that the dose he is taken due to weight & height he has already weened down 50% so
2:39 PM – 14 Mar 2012 - Liams Endocrine apt due 2 his weight &height he’s weened himself down enough that they r checking a cortisol level fri if good no more hydro
7:10 AM – 16 Mar 2012 - We are off to get Liam’s cortisol level drawn. Please pray for good levels so he can stop taking hydrocortisone.
6:41 PM – 18 Mar 2012 - Ryder just said to me “your the best mommy ever mommy” melted my heart
9:37 AM – 19 Mar 2012 - Liam did not sleep at all last night I hope he is ok. Cortisol level came back good! 13 so now we ween liver a little elevated
11:31 PM – 21 Mar 2012 - I was left speechless after reading a BMT parents post a dr told him that his child had HLH or cancer & that they should pray its not HLH
11:47 PM – 25 Mar 2012 - I hate HLH its that simple Its not fare or right 2 see your child fight so hard 2 beat HLH Its a heartbreaking disease that needs awareness
11:32 AM – 26 Mar 2012 - Liam just said I love you to Ryder. It was so cute
38 days… 1 year post BMT
- 38 more days until Liam is one year post bone marrow transplant!
I have to say this and I know I’m going to upset some people
“I have to say this and I know I’m going to upset some people but it has been weighing on my heart for some time. I want to say I respect parents decision to not vaccinate their children but I want to say by not doing so is bringing back all these diseases that would kill Liam if he contracted them. I cannot vaccinate Liam until at least 1 year post transplant. So he is not protected against them. It’s hard for me because I have watched Liam fight harder for his life than I ever knew possible and knowing that the spread of these illnesses could be potentially be eliminated if people vaccinated there child is hard for me to swallow. I think of all the baby, toddlers, children, and adults who fight so hard for there life’s and a illness that a healthy person could survive they don’t stand a chance against. This journey has opened my eyes and heart and there is so much that everyone could do to protect immune suppressed patients. As simple as washing your hands, staying home when you are sick, not sending your kids to school when they are sick. Thank about what could happen to those that are fighting the hardest battle of there life and what we take for granted can kill them. I hope I didn’t offend anyone but I had to get that off my chest. I hope as much as I respect others opinions you will do the same. I’m only asking you to think about what I wrote.”.
Please say a prayer for Jaelynn and her family..
In August 2011, Jaelynn was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a very rare disorder of the immune system primarily affecting young infants and children. This disorder causes the immune system to malfunction and attack the body.
DAY +339/36 – Clinic appointment today
Liam has a dr at today pls keep us in your prayers that all labs come back normal and he doesn’t get whooping cough. I’m so scared he might
On our way in I’ve been fighting panic attacks. I just hope God keeps his guardian angels around us.
Kristy’s update: So Liam’s liver is still elevated figured that out after 2 pokes. The possibilities are GVHD, HLH, virus not sure I like any of those choices but what can you do I live by hope every second of everyday but hope doesn’t keep Liam healthy.
Kristina updated her FB status:
“Today was perfect! The boys enjoyed the sunshine, hunted eggs, and ate home made pizza and coffee cake! Not a traditional Easter dinner but it didn’t matter. My Mom and Dad came up and ate. I got to see my brother and his beautiful family from a distance thanks to my mom who got all the eggs ready and my Dad for hiding them! We were all together thank you Jesus.”
DAY +334/31 – Liam is 19 months old today
Liam is 19 months old today and still kicking HLH in the butt! I love you baby boy your such an inspiration to me
Please keep Jaelynn and her mom in your prayers…
Please keep Jaelynn and her mom in your prayers. Her mom posted today that she is in critical condition. She was diagnosed with HLH on August 16, 2011. She recieved her Bone Marrow Transplant on Dec. 7, 2011. Pray for a miracle ♥
From Lisa post on April 5, 2012 - Jaelynn this morning.. Her oxygen level was low… Not a good day for her…
By: Lisa Yoo
Liam’s 11 months Post Transplant
- Liam is 11 months post transplant 2day! It was so hard 2 imagine him this far but here we are I’m so blessed that it hasn’t been his time
Diaper Rash Care & Home Remedies
Clinic Appointment tomorrow
Liam has an appointment tomorrow to have his graft and liver function tested. Please keep him in your prayers that all will come back good. Thank you
DAY +341/24 Lab draws today : (
Kristina updated her FB status: “Poor Liam had to be poked three times now we wait and hope for the best!”
Part ll – Meeting the Challenges of Chronic Graft Verse Host Disease in children & Adults
The mission of the National Bone Marrow Transplant Link is to help patients, caregivers, and families cope with the social and emotional challenges of bone marrow/stem cell transplant from diagnosis through survivorship by providing vital information and personalized support services. https://nbmtlink.readyhosting.com/index.htm
DAY +346 Today we head to Seattle…
Today we head to Seattle. I’m so nervous but I’m hoping for only good test results please keep Liam in your prayers. I hope now he can slowly start to be a normal little toddler. Please also keep all parents and children that are walking the hardest journey in life imaginable in your prayers too…Nothing can prepare you for watching your child knocking on deaths door. But the emotional support from others, so helps in those times. Thank you
Update 8:15 PM:
Almost 2 Seattle here will lie the truth on wether or not Liam’s bone marrow transplant will be his cure for HLH, I sure hope so! Prayers pls
DAY +347 – Clinic Appointment Updates 04/23/12
9:47 am – Blood draw done! Thank you Leslie you did a great job.
10:47 am - Headed to dental to check for GVHD of the mouth. Liam’s asleep stated up until after midnight & up at 6am blood draw he’s wiped out
12:50 pm - Dental appointment went good they didn’t see any GVHD in his mouth.
2 pm - Liver is still elevated so we wait for all the results to come back. They are having me stop the magnesium which is awesome because it was 3 times a day!!
Bone Marrow and Skin Biopsy Tomorrow
11:45 pm – Liam has his bone marrow and skin biopsy tomorrow at 9am pls keep him in your prayers that the procedure goes smoothly & only good results.
DAY +348 Testing this morning
7:45 am – So maybe I just want to skip this part of his tests I don’t like liam having these things done he already has so many scares and has been through unimaginable pain. I wish I could take his place. I will be so glad when this procedure is over.
Before Liam went to his procedure
10:00 am – We are still in the waiting room hopefully we will go back soon.
10:30 am – Liam in is now holding Liam as they put him out just felt so wrong parents are not supposed to see there child like that
10:45 am - My sweet baby is done
Immunology appointment. That WAS one of the nicest doctors I’ve ever met.
2:05 pm - Liam’s immunology went good! But they did say he cannot be around any children that have not been immunized until he is fully immunized. Tomorrow we should know the results of his blood chimerism.
DAY +349 – Liam’s 1 year Post Transplant Conference today…
10 am – I hope today brings only good news. Liam has an eye appointment 11am to check for GVHD. Then 3:00 is our big meeting.
3 pm – We are headed to Liam’s appointment I’m freaking out emotionally hoping all results are good. Please pray for good results
4:54 pm – So the results were not what I was hoping for Liam’s graft is dropping T-Cell 60% NK Function 10% B-cell 2% they are running another blood test to look closer at the T-cells if that is low then Liam will need a DLI donor boost which would require more blood from Hunter. We should know more on the new tests tomorrow or next week.
DAY+ 341 – 04/2012 DNA Chimerism Analysis – Blood
(CD3+) T Cell 60% donor origin (40% host)
(CD33+) Myeloid Cells unknown% donor origin (unknown% host)
(CD56+) NK Cells 10% donor origin (90% host)
(CD19+) B Cells 2% donor origin (98% host)
All his other tests look great but without a good graft they mean nothing but a ticking time bomb
5:37 pm - I feel like I’ve been punched in my stomach. It’s like the life is sucked right out of you.
5:41 pm – I know the results could of been worse but with your child the only thing you ever want to hear is good news. What ifs start to get a hold of you and it’s very hard. Liam is strong and I am very hopeful but the sad reality is that may not be enough
update from Jared Smith: It’s never going to be over thanks for the support. It’s going to be a life time journey for him.
Thank you for all the love and support…
I just want to thank everyone for your love and support it means so much to me I can’t express enough how much it helps when going through something like this. Please for me hold your loved ones close tonight and really take in what a gift it is. I love you all and I am so humbled by how much you care about Liam one day I hope he will be able to see and understand all the support he has been given. God bless you all
DAY +350/15 – Today updates
11:33 am – Physical therapy appointment went good! Still no word on the most recent blood tests
7:30 pm – The test came back low so Liam will be getting a blood draw tomorrow. Should know those results on Tuesday I’m sure he will need a DLI
10:30 pm – I really struggle with staying positive & reality I try 2 convince myself that everything will b ok but Liam has 1of the deadliest diseases
Donor lymphocyte infusion
Formerly, the only treatment option that offered relapsed bone marrow transplant patients hope of a cure was another bone marrow transplant. However, the risk of serious, life-threatening complications after a second BMT is great. One strategy of managing relapse, donor leukocyte infusion, might eliminate the need for a second BMT in some patients.
Donor leukocyte infusion is the infusion in which lymphocytes from the original stem cell donor are infused, after the transplant, to augment an anti-tumor immune response or ensure that the donor stem cells remain engrafted. These donated white blood cells contain cells of the immune system that can recognize and destroy cancer cells.
The goal of this therapy is to induce a remission of the patient’s cancer by a process called the graft-versus-tumor effect (GVT). The donor T-cells can attack and control the growth of residual cancer cells providing the GVT effect. It is hoped that the donor leukocyte infusion will cause GVT and lead to a remission of the patients cancer.
Patients might require standard chemotherapy, to reduce the amount of cancer cells they have prior to their donor lymphocyte infusion.