2nd BMT – DAY +84

Today was a long day. He was NPO – nothing by mouth from 1am until after is Bone marrow & Skin Biopsy around 11am. He had to be at the lab at 7am, we ended up be about 15 mins late because of a jack knife semi truck on the south bound 1-5 freeway. We were lucky that we only had to wait about 20 mins to go one exit. But we heard that others had to wait a long time. Than we had to head back to Seattle Children’s Hospital. Liam had a dental check up at 8am to look for Graft versus host disease in his mouth. The dentist said the his mouth looked great, she couldn’t see any GVHD. That was great news. Next appointment was at the Hemoc Clinic upstairs. Liam needed a stress dose of Hydrocortisone before his Bone Marrow and Skin Biopsy. He was really not very happy with all of this. I really think is so tired of all of the appointments, and all of the procedures. You can tell he knows something is up. He gets alot of nervous energy. His blood pressure and oxygen were all good. They took us back for the procedure about 10:15am. It is so hard taking him to have all of these things done. I know it is very important and it must be done. But it is so hard, you think it would get easier. That is not so, it seems like it gets harder. You just want him to be a normal little boy. I HATE IT WHEN THEY ARE SEDATING HIM, HE LOOKS AT YOU WITH THOSE BIG BEAUTIFUL EYES. YOU CAN TELL THAT HE FEELS THE MEDS STARTING TO TAKE EFFECT, YOU CAN SEE THE MOMENT OF FEAR IN HIS EYES BEFORE HE GOES OUT. HIS LITTLE BODY GOES LIMP. IT MAKES ME CRY EVERY TIME. Now we wait and pray that Noa’s cells are growing strong and no sign of HLH, and no GVHD of the skin. Next stop was Radiology, they did a Chest X-Ray. They sent some labs to Cincinnati Children’s ~ NK Function and SL2. They are also doing the Lipids, and other normal labs. Plus they are doing a sorted Chimerism Engraftment Study (CD3, CD33, CD56 and CD19). PRAYERS NEEDED…. THANK YOU FOR YOUR LOVE AND SUPPORT. 

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2nd BMT – DAY +82

Liam loves to look at all the photos and videos on the iPad of the family. Every time he see’s this photo, this is what he says, “NO NO’s (Noa) BLOOD SAVE BOO” It is so hard to hold back the tears. He has been through so much in his little life. This week Liam will have a bone marrow biopsy. Praying that Noa’s cells are engrafted. They have been watching his cells with blood tests. The Chimerism whole blood results have went down some, 85, 94, 81 and the last one 5/17 was 77. They are hoping that it will rebound and go up.

PLEASE PRAY FOR NOA’S CELLS TO GROW. Thank you for your prayers.

Liam’s HLH Journey shared Be The Match‘s photo.

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Liam learning to ride his bicycle (Video Link)

Liam learning to ride his bicycle. He had a smile from ear to ear. He said, “GO FAST” :) PRICELESS MOMENTS…

Liam – May 26, 2013 12:16pm If the video doesn’t work click on this link to view video. You will be redirected to his facebook page.

LOVE HIS SMILE…

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Spit for a Cure: New Study to Define the Role of Inheritance in Histiocytic Diseases

Spit for a Cure: New Study to Define the Role of Inheritance in Histiocytic Diseases

Source: http://txch.org/cancer-center/histiocytosis-program/research/spit-for-a-cure-new-study-to-define-the-role-of-inheritance-in-histiocytic-diseases/

Histiocytosis Research - Dr. Kenneth McClain & Dr. Carl Allen

The blood stem cell matures through different pathways to produce many different types of histiocytes, now called dendritic cells (DC) that are central to the pathology of the histiocytic diseases. Langerhans cell histiocytosis (LCH), Juvenile Xanthogranuloma (JXG), Erdheim Chester Disease (ECD), Hemophagocytic Lymphohistiocytosis (HLH), and Rosai Dorfman Disease (RD) are all thought to result from abnormal dendritic cell development and function. The question remains, what genes or pathways malfunction and are responsible for these diseases?

While the scope and potential impact of this project is global, the design is relatively simple. With new genomic technology, we can obtain an incredible amount of genetic information from a spit sample. By analyzing and comparing the genetic information of a patient and the parents from several hundred families, we hope to identify and uncover the inherited risk factors in all Histiocytic Diseases.

Our goal for the first phase of this global study is to enroll 500 triads (patients and parents). All patients with a history of any histiocytic disorder and their parents are welcome to participate in this study.

Please contact klmcclai@txch.org for more information.

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Liam is my HERO…

MOMMY HERO

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2nd BMT – DAY +79 Mommy’s Superman

My Superman! Love him more then words can express…

Liam was released from the hospital on Wednesday (5/22). He was waiting patiently by the door to go. It was a bitter sweet moment. Excited that he is doing well enough to go to the Ronald Housing. But the fear, leaving the secure feeling of the doctors and nurses being just a button push away. All blood cultures as of yesterday’s clinic appointment are all still negative. PLEASE CONTINUE TO PRAY THAT THE BACTERIA IS GONE FOR GOOD. Liam is doing good. He is really enjoying be out of the hospital, with more space to play. He has really been doing great eating. His night feeds were lowered. He was getting 15 hrs @ 50 ml per hour of Peptamen Junior with Beneprotein powder added. Then they lowered to 10 hrs @ 50 ml per hour. Now he is down to 8 hrs @ 30 ml per hour and no Benoprotien now. He is moving in the right direction

  Thank you for your continued prayers and emotional support.

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Mommy’s beautiful baby boy

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2nd BMT – DAY +70

Future Doctor ~`Blood cultures are still negative. Tonight is the last doses of meropenum. They will wait one day, than take blood cultures. Praying that the test will continue to be negative. He will be on the bactrim longer. He is still attempting to eat small amounts of food. They have reduced the amount of hours he is receiving his night time feeds from 15 hrs, to 10 hrs a day. We are hoping it will help increase his appetite to eat more foods during the day. They will watch his weight and calorie intake to make sure he gets the amount calories he needs in a day. Thank you for your prayers

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2nd BMT – DAY +67

Happy Mother”s Day from Liam (4 photos)

 

Liam is having a great day. He slept well last night. Fell asleep around 10:30pm, and didn’t wake up until 9am. He woke up with a beautiful smile and happy. The lab cultures are still negative. We hope all the moms have a great day.

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2nd BMT – DAY +66

Liam is having a good day. He has been up playing since he woke up from his nap. The last few days he has been eating small amounts of food at lunch and dinner. Still not interested in breakfast. But he get feeds all night through his ng tube. So eating is a big thing post transplant  His blood cultures as of today are still negative. Just praying that the medicine will completely get rid of the bacteria. They will recheck the cultures in a couple of days. His last dose of meropenum is on the 15th. He will conitnue on the bactrim. Thank you for your prayers.

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