Update

Liam has a cold 🙁 not sure what , they did a nasal wash and listened to his lungs. They will know more tomorrow about the nasal wash. Lungs were clear so far and I have to watch him closely for fever or trouble breathing. I just hope he gets over this cold with no complications. They will check his chimerisms at day +28. I was also told I will be in Seattle at least a month more. I need strength…

Posted in Hemophagocytic lymphohistiocytosis (HLH), HLH, Liam's BMT updates | Tagged , , , , | Comments Off on Update

Clinic appointment today…

09:00 am – The boys and I will Headed to appointments today, please pray for good results. He will not have his graft tested again until day +28. But they are closely monitoring everything else. Thank you for the love and support

10:00 am – Please pray I think Liam may have a cold 🙁 I’m freaking out!

10:45 am – I love that I have people around me that are always there, no matter what 🙂

Posted in Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's BMT updates | Tagged , , , , , | Comments Off on Clinic appointment today…

Remembering Dr. E. Donnall Thomas

Source: http://www.sccablog.org/2012/10/remembering-dr-e-donnall-thomas/
 
By HARRY C. EDWARDS | Published: OCTOBER 22, 2012

Dr. E. Donnall Thomas, who pioneered bone-marrow transplantation to cure leukemias and other blood cancers, died Saturday. His groundbreaking work, for which he won the Noble Prize in 1990, has benefited hundreds of thousands of people around the world and is considered among the greatest success stories in cancer treatment. Learn more about Dr. Thomas’ career through these various stories and remembrances:

From The New York Times: “Many physicians abandoned the approach, believing that bone marrow transplantation would never be safe enough to be practical. Dr. Thomas persevered, despite numerous failures and the criticism that he was exposing his patients to undue risks.”

From The Seattle Times“In the 1950s, Dr. Thomas performed the first successful bone-marrow transplant between identical twins, then worked for more than a decade to achieve that result in siblings who were not twins. In the late ’70s, he led a team at the Fred Hutchinson Center that achieved success for people who were not related.”

From Fred Hutchinson Cancer Research Center“At first I thought there was something wrong at the hospital, but then he was saying something about it just being announced — I had won the Nobel Prize,” says Thomas, whose four decades of bone marrow transplantation research was recognized by the award.

From the Remembrance Book at the Hutchinson CenterMy son John is 22 years post bone marrow transplant. He was 17 years old when he had a transplant. He is now a Firefighter/Paramedic in Jacksonville, Florida. Thank you for your perseverance in Bone Marrow Transplant Research and for giving me my son. Lynn Johnson.

E. Donnall Thomas, M.D, 1990 Nobel Laureate

source: http://www.fhcrc.org/en/about/honors-awards/nobel-laureates/thomas.html

Pioneering bone marrow transplants to cure leukemia

There was a time when a leukemia diagnosis was a death sentence. Chances of survival were little more than zero.

But thanks to a team of pioneering scientists led by Dr. E. Donnall Thomas at Fred Hutchinson Cancer Research Center, tens of thousands of leukemia patients now lead productive lives.

Laboring in the basement of temporary facilities in Seattle four decades ago, Thomas sought to do what others were convinced would never work. He ventured to cure leukemia and other cancers of the blood by destroying a patient’s diseased bone marrow with near-lethal doses of radiation and chemotherapy and then rescuing the patient by transplanting healthy marrow. The goal: to establish a fully functioning and cancer-free blood and immune system.

Today, the success of bone-marrow transplantation stands among the world’s most significant medical advances. The technique has transformed leukemia and related cancers, once thought incurable, into highly treatable diseases with survival rates as high as 90 percent.

A medical visionary, Thomas received the 1990 Nobel Prize in physiology or medicine for this lifesaving work.

http://www.fhcrc.org/en/about/honors-awards/nobel-laureates/thomas.html

http://seattletimes.com/html/businesstechnology/2019485178_thomasobit21m.html

Posted in Bone Marrow Transplant | Tagged , , | Comments Off on Remembering Dr. E. Donnall Thomas

Update from Mommy

They started Liam on Ursodiol in hopes of protecting his liver. Now we wait and watch for signs of GVHD. He will have weekly blood draws to watch his ANC because they think he will drop down and could go to zero. That would mean he would have to protection against viruses 🙁 I hope this goes smoothly and his graft goes up…

Posted in Doctors Appointments, Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's BMT updates | Tagged , , , , , | Comments Off on Update from Mommy

Liam’s leaving the hospital today : )

Posted in Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), HLH, Liam's BMT updates, Photos | Comments Off on Liam’s leaving the hospital today : )

Liam is going to receive Hunters cells today, please pray… updates from mommy

Liam checking out where Hunter had the blood drawn

8:30 am – Hunter is with my dad donating cells for Liam pls pray it goes smoothly and that when they get to Liam his body excepts them no more HLH

11:00 am  – Just got a call from my dad, Hunter is done! My dad said Hunter is really tired 🙁 that is to be expected they took a lot of blood.

01:38 pm – PLEASE PRAY ♥

Hunters cells r going in pls pray it is uneventful and that Liam’s little body excepts them with little or no GVHD and it works Ty

2 pm – I am a nervous wreck

  

  

4:15 pm – Liam is done! Nothing unusual yet! I’m hoping it stays that way 🙂 thank you for all the prayers it means so much

Posted in Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's BMT updates, Photos | Tagged , , , | 1 Comment

Today you can tell Liam is not feeling a 100% :(

Update from mommy,

Hunters last appointment before he gives the boost

Today you can tell Liam is not feeling a 100% 🙁 it breaks my heart to see him ill again. Children should not have to suffer or go through this much. I’m so filled with anger right now that the first BMT didn’t take and now we are just hoping this boost will. I’m speaking straight from my heart not sugar coating the situation there are risks with giving him the immune suppressant his liver is really elevated and that is a concern so waiting to see what that does. Then comes the boost were he can get GVHD, or deadly GVHD, or it may not work or now his immune system is suppressed and he gets a cold and that could potentially kill him. If he survived the boost but it doesn’t take then back to square one another BMT. This BMT would mean Noa would now be the donor and I have to then face that Hunter may feel like he wasn’t good enough to save his brother. Noa now carries that burden. Will it work using Noa, I don’t know. So I could have two children who tried to save there brother and both attempts might fail. On top of that I might lose my baby boy :'( this is by far the worst thing a mother could go through apart from losing their child. I know I still have Liam and I am very thankful, but the reality is always there. You cannot forget the possibility of the worst, it just doesn’t work. The pain and fear are always there no matter how hopeful you are. Hope is always there mixed with the what ifs. Please pray this works and he can soon be a normal little boy…

 

Posted in Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's BMT updates, Photos | 2 Comments

On the way to the hospital :(

Liam is being admitted to the hospital today, he will start the process with immune suppression medications to prepare him for the donor cell boost from Hunter. Please keep Liam and Hunter in your prayers ♥ Thanks, Nana

Liam will receive one dose of Pentostatin (chemotherapeutic drug) today. Then he will receive his donor cells from Hunter on Friday.

post from mommy:
 

8:00 am – On our way 🙁

I feel like I’m sleep walking! I forgot the exhaustion of  the BMT world 🙁

  

Posted in Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), HLH, Liam's BMT updates, Photos | Tagged , , , | Comments Off on On the way to the hospital :(

Picc Line placement today : (

Today updates from Mommy:

6:30am – Trying to convince a 2 year old that they can not eat or drink is not going over so well 🙁

7:30am – On our way to the hospital 🙁  Liam will be getting the picc line today, please pray everything goes smoothly…

  

 10:45am – Liam is in surgery pls pray that it goes smoothly. I’m a wreck I hate the what ifs 🙁

12:45pm – Liam is out of surgery everything went well 🙂 but he is not happy about the pic line 🙁

1:15pm – Off to another appointment

2:15pm – I hate being this scared about my child… It’s not right at all

Posted in Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's BMT updates, Photos | Tagged , , , | 2 Comments

Today’s conference…

So Liam has converted back to his own blood type, this makes the process a little more complicated but still doable. Instead of giving Liam, Hunters whole blood they will now break it down before giving it to Liam. His pic line goes in tomorrow and on Wednesday he will be admitted to the hospital to receive the immune suppressant. He will then have a day of rest and on Friday, Hunter will donate at 8:00am and Liam will be waiting at children’s for his boost. Please pray this works for Liam. Hope is all we got…

Posted in Doctors Appointments, Hemophagocytic lymphohistiocytosis (HLH), Histio Awareness - HLH, Hemophagocytic Lymphohistiocytosis, HLH, Liam's BMT updates | Tagged , , , , | 1 Comment