Cancer treatment hammers the body. Everyone knows this. If the cancer doesn’t kill you, the chemotherapy could. Kids fare better with chemo than adults, I think, because they heal faster. However, regardless of the outcome, the ‘during’ treatment pains and aches are universal. When chemo agents are administered, the clock starts ticking towards low blood counts. White bloods cells, red blood cells, platelets, etc. Once the counts bottom out (the drop in counts stops), they start climbing back up. The first doses of chemo don’t cause as much of a “bottoming out” of the counts as much as the doses that follow. The body doesn’t have time to heal back to its original condition before the next chemo agent doses are supposed to be given. With each dose, the body takes longer to heal and doesn’t heal as much. Two of the counts that are closely monitored are the hematocrit (HCT or ‘crit’) and hemoglobin (HGB). Hematocrit is the volume of red blood cells in the blood. Hemoglobin are the metalloproteins that carry oxygen in the blood. The lower the HBG, the lower the oxygen in the blood. When these levels are lowered, people start feeling real crappy. They get grumpy, agitated, irritated, etc.
Chemotherapy and Blood Transfusions
To counter these low HGB and HCT levels, hospitals give blood transfusions. This is standard practice with chemotherapy treatment. It is nearly a guarantee that a person receiving chemotherapy will have blood transfusions, especially in pediatrics. Some kids receive a lot of them, depending on the treatment they are going through and how well (or not) their body is healing and replenishing itself. In speaking with the nurses at Sacred Heart in Spokane, blood transfusions are part of daily life with patients in the Children’s Hospital. I understood the concept of replenishing what the body needed to survive. But that concept is what I examined when the time came to sign off on a blood transfusion for Miette. What does the body need to survive? As I looked into that question I realized there was a debate brewing in my mind between what the body needs to survive and what the doctors and nurses want. In short, are blood transfusion necessary during childhood (or adult) cancer treatment?
“It’s what we’ve always done”
As Miette’s HCT number dropped and started approaching 20 and her HBG approached 8 the nurses and doctors said its time for a transfusion (A normal person’s HCT is in the 34-40 range and HBG in the 11.5-13.5 range). In the mainstream cancer treatment world, those two numbers (20 and 8) are triggers for blood transfusions. During her “week off” from treatment she developed a fever and mucositis and was admitted back into the hospital 3 days after getting out. Her HGB was at 8 and her HCT was at 20 and her numbers appeared to still be dropping. How far would they drop? No one really knows since everyone is different. One way to tell is to see how fast they are dropping with each blood test. When the number drops start to slow down and/or bottom out, you can assume they will start climbing at any time. However, I was approached about Miette receiving a blood transfusion. I have never been keen on blood transfusions to begin with, so I asked why does she need one now? Why at 20 and not 21? Why can’t we wait till 18? They gave two reasons: First, it will help her feel better; according to the nurses, most kids feel better after receiving a transfusion. They couldn’t answer what that “feel better” means, partly because they weren’t the ones receiving chemo. Second, they said its just what they’ve always done when the HCT hits 20 and/or HGB hits 8. Hmmm. Out of all the answers I wanted to hear as to why someone wants to inject someone else’s blood (which is essentially a soft tissue transplant) into my daughters body, “it’s what we’ve always done” wasn’t one of them. At all.
Back to the Studies
I did a lot of research with chemotherapy up to that point in Miette’s treatment but I hadn’t done anything on blood transfusions. So here we go. Blood Transfusions. Why? What does it do? What’s the history behind transfusions? What are the side effects? What actually is it (there are multiple parts to blood)? After my research, I found out that indeed these 20/8 numbers were trigger numbers, but that they were developed over 70 years ago and there has been no documentation as to how or why these numbers were picked. I determined that Miette was not going to get a blood transfusion because of these “magic numbers” and told the nurses not to administer a transfusion. Due to our previous history with the State of Washington and the Department of Social and Health Services, this refusal sent the red flags skyward, raised the terror level and nearly re-ignited the cold war. The hospital’s social worker approached us about this topic, asking why we don’t want her having a transfusion. This is the first step towards “working with the parents to come to a mutual understanding”. Or in other words, this is the first step in a process of giving her a transfusion anyway because parents only have so much say in their child’s treatment – and its not just regarding major decisions. However, we were going to exercise every ounce of “our say” in Miette’s treatment; push the envelope as far as it could go, just before losing custody of our kids. Making these decisions to question the “authorities”, knowing the potential consequences, is not easy. Knowing if something is bad for your child could be easy, but deciding to get in the arena with a red cape to face the raging bull (especially if you just questioned that bull’s authority) is a nerve-wrecking decision. Rather than re-write everything I explained to the hospital, I will just copy and paste the letter I sent to the social worker in response to her inquiry that sums up what this all meant.
pubmed/7737942 (“… immunosuppressive effects associated with perioperative ABT might adversely affect overall prognosis in patients with a malignancy who undergo curative cancer surgery” (Miette will be having this done shortly)
Articles/Journal%20Clubs/2006- 10/Blood%20transfusion% 20increases%20risk%20of% 20post-op%20infection.pdf
content/70/1/15.full (“ Allogeneic RBC transfusions induce immunomodulation in the recipient. As a result, the incidence of postoperative infections is elevated in transfused patients and cancer recurrence may be favoured“)
Towards the end of the week, Miette did receive a transfusion of red blood cells. The transfusion was only half of a regular “dose” of what the kids usually get to “feel better”. The envelope was pushed as far as it could, before the doctors finally gave me the ultimatum that they are going to give her a transfusion (without my consent). But they offered the half dose – this is why Sacred Heart was a much better choice. Give them some credit; even though the (CPS) threat was always there, they still actually worked with us. When they administered the transfusion, her HGB was 5.1 and her HCT was 14.5. Her counts went that low and where there for about a day… and she was still alive, alert (for the most part – she was on morphine) and awake. Even more so, she hadn’t eaten anything for the previous 4 days because of the mucositis in her throat. I imagine those counts could have gone a bit lower if she was eating normally; having food in the belly also “makes them feel better”. That was the overall message I got with the research and studies I read: the body can actually take more than what the doctors think when it comes to the HGB and HCT numbers.
Needless to say, that was a tough week. Not only in watching Miette suffer from the chemotherapy effects, but once again the “threat” and going into battle mode to stay on top of our daughters treatment and maintaining our parental presence. One goal in my research about the different drugs, treatments or procedures the medical community wants to perform on our daughter is to not only make sure it’s absolutely in her best interest but also to show the doctors and nurses that our decisions are educated and thought out decisions. In this case, I knew more about the history, side effects and dangers of transfusions than the nurses did. Or at least what they led me to believe they knew. I’m assuming the answer of “it’s what we’ve always done” without any other explanation meant they didn’t really know.
Blood Transfusion Abuse?
So given the lack of evidence that blood transfusions are as beneficial as they are claimed to be, the question should probably be asked if too much blood is used for a purpose when it shouldn’t be? There are “blood shortages” all the time. Blood drives are happening a lot with desperation. The part that gets me is the large amounts of blood transfusions that happen on the oncology floors. I can see why there are shortages: because of this “magic number”. From what I saw and heard, transfusions appear to be knee jerk reactions at cancer treatment centers… all because of tradition! What if that “magic number” was lowered a couple points? The patient would not die (assuming our daughter is proof) but yet the amount of blood used would go down dramatically.
As stated elsewhere on this site, these opinions are just that… opinions. Obviously the studies are studies… but my interpretation of those studies and how they fit with my child are something I had to do for our family. That may not fit for your family. Each family and situation is different. I do encourage parents to research what their child is being faced with. You might come to the same conclusion as their doctor. With blood transfusions, for us, that wasn’t the case.