Blood Transfusions All Around
Homeschooling and Hematology seems to be the measure of our family’s life right now, but it hasn’t always been the case. I talk about other things too, just not in the last two weeks.
Kenny had an early appointment with Dr. Sasa at the Texas Children’s Cancer & Hematology Center yesterday. The clinic drew more blood (of course) and then, we spoke with Dr. Sasa for a good while. She was extremely thorough, asking questions about my pregnancy with Kenny, the delivery, his early years, all the way to his current health issues.
Once the initial lab work came in Dr. Sasa let us know that Kenny’s hemoglobin had dropped in the past two days (6.3 to 5.8) and he needed another transfusion. As you can imagine, that was terribly disappointing and frustrating for Kenny and for us, but not completely unexpected.
After yesterday’s transfusion Kenny actually had a bit of healthy color in his cheeks, which is awesome because we haven’t seen that for two weeks. However, the whites of his eyes are still a bit yellow.
Both before and throughout Kenny’s transfusion he ran a low grade fever, but it was gone this morning when he woke up.
We will return to TCH on Tuesday for another blood count. If his hemoglobin is low he will have to have his third blood transfusion.
While Kenny was receiving his transfusion there were other boys getting transfusions for sickle cell anemia and another boy was getting a chemo treatment. The boys sat around a large screen television and played Mario Bros. on the Wii. It was a perfect distraction because it sort of “normalized” the whole thing and made it a lot less scary.
The children’s cancer treatment area is sort of an outpatient community room. Families come in and get whatever treatment their kids need and then leave. The atmosphere feels very laid back, but it is obvious the nurses are on their “game”.
Patients and their families come in, find a place to bunk down and get blankets and pillows out of the cabinet for their comfort. Jeff and I did the same, reading our books and talking to the surrounding families while Kenny played on the Wii.
It didn’t take long for two little sisters to take a liking to Jeff. The oldest of the two girls just turned 3 and has already endured two brain surgeries. She was there for an MRI and blood transfusion. The mother has literally lived in the hospital with her daughter for two years. My heart just hurt for that little girl and her mother – I can’t even imagine what they’ve been through.
I will admit it puts a lot of things into perspective to sit and listen to all the stories. We don’t have answers to Kenny’s issues right now, but I feel very blessed for what we have been able to rule out so far.
Back to the Results
In addition to the decreased hemoglobin, Kenny’s labs indicated an increase in his bilirubin, LDH, and reticulocyte count. I asked a lot of questions and this is what I understood of the answers:
- Elevations in bilirubin are caused by an increased rate of red blood cell destruction. This is why his skin and the whites in Kenny’s eyes look yellow.
- Increased LDH simply means hemolysis is occurring, which is simply a breaking apart of red blood cells.
- The reticulocyte count measures the rate that new (immature) red blood cells are made by the bone marrow and released into the blood. There is a rise in reticulocyte count when there is a lot of blood loss (which he doesn’t have going on) or red blood cells are being destroyed prematurely.
As of now we are waiting for lab results to determine whether or not Kenny has enzyme deficiencies in his red blood cells, making them fragile and more prone to being destroyed too quickly.
If that test comes back negative, the hematologist will then test to see if there are abnormalities in the red blood cells that cause them to change shape. The reason this is an issue is because the spleen views odd-shaped red blood cells as abnormal and destroys them.
We know that Kenny’s body is destroying red blood cells in circulation (Intravascular hemolysis) and no one yet knows WHY.
His re-test for antibodies came back negative, meaning there does not appear to be an auto-immune issue going on.
I feel like saying “Thank You” over and over for all the prayers is not enough, but I hope you understand that it has meant the world to our family knowing that so many are lifting him up in prayer. We ask for your continued prayers.
Please pray we get some answers this week and that Kenny’s hemoglobin levels stabilize or increase so he does not have to have another transfusion.