Blood Transfusions

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.

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Blood transfusions and the benefits of it haven’t been studied very much in randomized controlled studies. In fact, there has really only been one comprehensive study done (TRICC in 1999). That study showed that the need for transfusions was not as great in determining recoveries as they are stated to be. The practice of transfusing based off a number (HGB under 10-11, Crit under 20-21) is a 60-80 year old practice (depending on what document you read). This practice has been handed down throughout the generations without any scientific proof that it is actually beneficial at certain times.
 
Blood transfusions are also not without dangers AND side effects. Blood is screened for major viruses but they can’t screen for everything. The chances of getting a virus from a transfusion is greater than vaccinations, even for the viruses that are scanned for. One of the side effects is a fever. If Miette would get a fever then that’s an automatic admit and stay for a few days. If that were to happen, then chemo would be delayed anyway (one other reason for transfusions is to keep on a compressed chemo schedule). Another major issue I have with them is they are immunosuppressants. Her immune system is so suppressed as it is, why would we want to suppress it more, just so she “feels better” for a couple days. When it comes to Miette, I look at everything as a risk vs reward. I know the hospital staff may not be used to a parent who wants to be as involved as I like to be; to questions things and ask “why”. They are professionals though and I believe without a doubt they can handle it as much as Lisa and I can handle our child going through all this. When I started asking “why” about blood transfusions and started researching to find an answer, I realized its based more on tradition than actual studies and that concerns me with regard to my daughters best interests.
 
My issue is not that we don’t do transfusions but only do them when it’s truly life threatening… not based off a number. Miette’s color was fine considering her counts this week. Her behavior was acceptable at home (Vicki stated she was grumpy when being accessed. She gets pissed when being accessed when her counts are sky high too so that’s not a factor in this). Lisa said Dr. Judy even said she looks decent. As Miette’s concerned father, I believe the risks of a transfusion (based off evidence from the medical community) when its not ABSOLUTELY necessary (aka, based off a traditional number) is not worth the benefit.
 
I have included some interesting resources for reference about transfusions if you care to check up on my statements, which you should do :) There are many more references out there, these are just a few.
Based off these reports about transfusions, I personally pose the question as to whether the 25% recurrence rate of Ewing’s Sarcoma could be tied to the amount of transfusions the patient received. Maybe a study should be done to restrict the amount of transfusions and see what the recurrence rate is of that group vs those with normal transfusions. The Transfusion Requirement in Critical Care Trial  (TRICC) showed that people with a more restrictive transfusion rate fared better in ICU recovery than those with more liberal transfusion rates. I just question the relation to cancer survival rates to blood transfusions.
 
Anyway, those are my reasons. If Miette was in danger of her life, I would not refuse a blood transfusion.
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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.

Whew.

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.

Disclaimer

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.

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