Liam's HLH Journey

Kristy’s Twitter Update – May 27, 2011, 8:30 AM
Day+15 Liam’s ANC 120 WBC 0.6. He threw up again this morning but again I think it is due to the mucus.

May 27, 2011, 9:30 AM
This is such great news for our Family to hear, two days of increase in his numbers in a row.

This is our Cell Song – “Grow Baby Grow” Thank you Lord.
( so happy for Liam ) (((HUGS))) ♥ ♥ ♥
Nana really needs a little help with the rest of the song, any songwriters out there.

Here is our (Celia and Terri)
rendition: to the tune of Row Row Row Your Boat!

Grow, Grow, Grow new cells~
Gently in your blood!!

Healthy white cells may we see
As we are waiting patiently!

Grow, Grow, Grow new cells
Gently in your blood!!

Giving that old HLH a kick
And no more will you be sick!!

Grow, Grow, Grow new cells
Gently in your blood!

Let the grafting and new marrow grow!
Telling that old HLH to get out and go!

Grow, Grow, Grow new cells
Gently in your blood!

With the donation of marrow from Hunter with love,
And the Lord’s healing grace from above!!

May 27, 2011, 8:00 PM
Papa returned home today, after being with Liam for 17 days. He said that everyday since monday Liam has slightly improved each day. He had some really rough days, where it was hard to get him to smile. Yesterday Papa says, was one of the best so far. He played in his saucer for along time. Than he played in the tub, splashing water all over.

May 27, 2011, 9:38 PM
Liam has a low temp 99.4, and he threw up again

Kristy’s Twitter Update – Thursday, May 26, 2011, 6:53 AM

Day+14 ANC 112 WBC 0.4 So hopefully it will hold there and only go up. He did throw up again this morning but I think from the mucus

This has been a very hard day, filled will extreme frustration and disbelief

frus·tra·tion
1. dissatisfaction: a feeling of disappointment, exasperation, or weariness caused by goals being thwarted or desires unsatisfied
2. frustrating of somebody or something: an act or instance of causing somebody or something to be dissatisfied or unfulfilled

dis·be·lief
feeling of not believing: the feeling of not believing or of not being able to believe somebody or something

Kristy requested Reverse Isolation for Liam, they will not allow this for my grandson. The hospital protocol does not call for gowns or masks to be worn when caring for BMT patients.

Kristy’s Twitter Update – Wednesday, May 25, 2011, 11:58 PM
I would like 2 know when we lost are right 2 protect our children.I am so saddened by this.They say u r contagious 3 days b4 u have symptoms

But yet nurses and doctors can come into Liam’s room without a mask on. That only takes common sense to figure out. Why take that chance?

Cold Virus Info:
A cold virus enters your body through your mouth or nose. Colds are highly contagious and most often spread when droplets of fluid that contain a cold virus are transferred by touch. That’s why you can get a cold by touching your eyes or nose after you touch surfaces with cold germs on them. Hand-to-hand contact or shared objects (utensils, computers, towels, toys, telephones, etc.) can cause you to catch a cold. You can also inhale the germs; the virus can spread through droplets in the air when someone who is sick coughs, sneezes or talks.

They have nurses go into rooms with highly contagious infections they gown up but then they come into Liam’s room.

Sunday, May 22, 2011, 10:35 AM
Phone update from Kristy this morning. A bit of a low moment this morning. Liam is still in alot of pain, it is so hard to hear the sad painful cries thru the phone. His labs went back down today. I will try to get more info later.

WBC <0.2
ANC (Absolute Neutrophil Count) 0
Platelets 13

Kristy’s Twitter Update – May 22, 2011, 2:20 PM
Day+10 Liam’s ANC and WBC are 0 again but they expect it to go up and down They got his pain under control last night but today had 2 go up

Liam will get platelets today his level was 13. He will also get IVIG the immune booster. I just hope that we can get his pain under control

May 22, 2011, 5:01 PM
Liam has a low temp 101. They are going to do lab work to see if he has an infection. It is going up and down.

May 22, 2011, 7:48 PM
They are taking Liam to Radiology to get a chest x-ray.

Kristy’s Twitter Update – May 22, 2011, 9:30 PM
Liam has a fever they r not sure why. He got a chest and stomach x-ray they came back clear. So now we just wait and hope for the best:(

Liam getting a Chest x-ray

Kristy Twitter Update – Saturday, May 21, 2011, 1:02 PM
“My son is starting to graph, my son is starting to graph” I just needed 2 say it again I am bursting with joy and excitement.
about 5 minutes ago

Kristy’s Twitter Update: May 21, 2011, 12:17 PM

Day+9 Liam woke up at 3am and threw up. WBC 0.3 ANC (Absolute Neutrophil Count) 42 so he has begun to graph:) He is in alot of pain still can’t get him 2 sleep. Platelet 26
about 2 minutes ago

ANC = (%neutrophils + %bands) x WBC

Mucus is very bad in his throat sounds horrible:( A nurse came and said he looks just like his Dad funny thing was it was my Dad not Jared.
about 14 minutes ago

Kristy’s Twitter Update – May 21, 2011, 10:04 PM

They slowed his feeds down in hopes that it will prevent him from throwing up but he has so much mucus I am not sure that will matter.

They have had to go up on his pain meds twice today. When they graftt it is very painful I hear and they r not sure if it is GVHD I hope not

Grafting is the right way to spell it. I am way to tired. If they think it is GVHD then they will have to scope his GI tract(upper GI). 2 make sure

http://www.nlm.nih.gov/medlineplus/ency/article/003009.htm
When receiving stem cells, a patient may have these symptoms:
Pain
Chills
Fever
Hives
Chest pain
Drop in blood pressure
Shortness of breath
Nausea
Flushing
Headache
Funny taste in the mouth

Measuring Engraftment
http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/
Waiting_for_Engraftment_Days_0/Measuring_Engraftment/index.html

After you receive a bone marrow or cord blood transplant (also called a BMT), your transplant team will watch for signs of engraftment. Engraftment is when the donated cells you received for your transplant start to grow and make new blood cells.
You will have daily blood samples taken while you are waiting for your donated cells to engraft. The blood samples will be given a complete blood count (CBC) test. A CBC test can give your doctors information about the kinds and numbers of healthy cells in the blood. The types of blood cells that are counted to measure engraftment are neutrophils, which are a type of white blood cell that are important for fighting infections, and platelets, which help control bleeding.

Neutrophil engraftment
A CBC test counts the number of neutrophils in your bloodstream. An absolute neutrophil count (ANC) of 500 or more for 3 days in a row is a sign of engraftment. This means that the blood test shows 500 or more neutrophils in a cubic millimeter of blood. Neutrophil engraftment can occur as early as 10 days after transplant. About 20 days is more common for patients who receive marrow or peripheral (circulating) blood cells. For patients who receive cord blood, the average time to neutrophil engraftment is between 21 and 35 days.

Platelet engraftment
A CBC test will also show the number of platelets in your bloodstream. A platelet count of 20,000 to 50,000 is a mark of platelet engraftment. This means your blood test shows 20,000 – 50,000 platelets per microliter of blood. For patients who receive marrow or peripheral blood cells, platelet engraftment often happens at the same time or a little bit after neutrophil engraftment. For patients who receive cord blood, it may be 8 weeks or longer after transplant before platelet engraftment occurs.