Adahlia’s Hb was 7.7 yesterday. It had been four weeks since her last transfusion.
This is not necessarily bad news. In fact, its pretty good. Adahlia’s previous blood draw said her Hb was at 6.8 after four weeks.
If she had only been 0.3 higher, we might have elected to wait another week for transfusion, to try to get more of her RBC stem cells to turn on.
In fact, the doctors were expecting us to resist transfusing her, expecting us to want to wait a week to keep the stimulation on her bone marrow to produce RBCs. But she’s started to show some signs of anemia: more easily upset, quicker to cry, getting disoriented more easily and muscles giving out and falling. We knew she probably was not as bad off as before due to the fact that she was still ok with letting joe hold her, instead of needing me. The thing is, I want her brain to get plenty of O2. I want her body to have the oxygen it needs to grow. And so while sometimes, with kids on chemo, they wait even until 6.0, we chose to transfuse. Her body is under enough stress. We are lucky she has been able to grow normally, mentally and physically, as it is.
This is approximately her 14th transfusion, as she received 5 transfusions when she was initially admitted to the hospital at 6 weeks old, and then one a month since then, except for one time when she only went 2 weeks before needing another transfusion.
This is important because doctors expect to start having problems with rising iron levels, or iron overload, between 10-20 transfusions. Iron cannot be readily eliminated by the body, so it ends up getting stored in the liver, pancreas, and heart, causing failure of those organs. Doctors monitor iron storage via blood Ferretin, which is imperfect but gives a ballpark figure to estimate the body’s iron load. Normal is less than 200. Approaching 1,000, doctors start to worry and will use pharmaceutical cheating agents to pull the iron out of her system. The drugs save lives, and can cause side effects.
After she was released from the hospital that first time, at 6 weeks, her iron was 520. It likely continued to build up after that point, but we never measured it again until March, when the reading was only 490… after six more transfusions.
Its really inexplicable according to biomedicine. I now attribute the drop to the fact that I was giving her liquid chlorophyll, approximately 1/4 tsp in some water, twice a day, for about a month prior to her March blood draw, for the purpose of building blood. Chlorophyll is high in vitamins and minerals — including iron, which I did not fully realize it at the time.
When I realized chlorophyll was high in iron, I stopped using it with her. But the fact that her ferretin dropped instead of worsening didn’t make any sense, so I looked into it further.
There are contradictory opinions in the medical community about liquid chlorophyll’s ability to leech out excess iron. Some say that it is idiocy to add a high-iron supplement to iron overload. Others say that the organic plant-based iron pushes out the stored excess, somehow aids its release, or perhaps triggers the body to expel it.
I’ve mentioned how I’ve been giving her baths in bentonite for about a month. Bentonite binds to toxins, viruses, and heavy metals and draws them out of the body. My intention was to draw out toxins as well hopefully excess iron, even though, like chlorophyll, it is actually high in minerals (including iron) itself. About a week ago, when I learned of the controversy surrounding the use of liquid chlorophyll to remove excess iron, I cautiously reintroduced it, although this time I only gave it to her it at bedtime.
As you can imagine, I was very curious to know if any of this would have any effect, or, to put it more precisely, help reduce her iron load.
Well, her ferretin count was only 507.
Her iron levels remain only half of what the doctors would expect them them to be, given how many transfusions she’s had.
Her doctors were thrilled. They said that either she’s using the iron (which doesn’t make a whole lot of sense since she’s not making a lot of her own blood) or she’s found a way to excrete it. I’m thrilled because it appears that maybe we can use natural measures to keep her iron down. And the less pharmaceutical drugs we give her, the better.
I am considering doing a little more liquid chlorophyll, perhaps reintroducing the morning dose. I think that perhaps the bentonite is not working as well as the chlorophyll, at least not yet. I will continue the bentonite clay baths, though, because the clay also helps nourish and moisten her skin, which can be dry (lack of yin fluids to moisten appropriately, according to Chinese medicine, which makes sense with her lack of blood). The chlorophyll is nice because it contains many elements that she needs to build blood, in conjunction with its detox abilities.
The other encouraging news was her reticulocyte count, which was 27. This is the second highest its ever been and qualifies as low-normal in a non-anemic person. Now of course, since she was so severely anemic, it should have been like 115. But, if it keeps trending upwards, it means that her bone marrow is recovering and making more red blood cells in response to anemia, like it should.
And that is why the doctors thought I’d want to wait on the transfusion, because a rush of transfused blood will cool RBC production. But, it should still trend upwards as the transfused blood slowly begins to wear and die out, if the bone marrow is indeed recovering.
The transfusion itself was also one if the easiest ones she has had. The phlebotomists were stellar, as usual. Where we got lucky was with the IV tech, who (we found out later) is considered in the pediatric hemo/onco ward as one if the best. Heavy-lidded, heavy-set, and absolutely devoid of expression, I was pleasantly surprised to witness this middle-aged hispanic man expertly insert the IV catheter into Adahlia’s cubital fossa in just one poke. Wrapping it gently in a loose, bumble-bee patterned self-sticking bandage, he tossed a couple jokes around and left. If I wasn’t holding Adahlia, I would have hugged him.
It was a huge improvement from the 6 or 7 attempts it took the IV tech last month. And it set the stage for a less physically painful 4-hour transfusion to follow. She did cry and scream at us more than normal, but it was because she was mad about being there and frustrated about not being allowed to crawl on the floor, not because it was particularly traumatic. We read books, ate strawberries, took laps around the floor with her IV drip, and played with finger puppets to try to pass the time. In some ways, it was a good sign. A healthy baby doesn’t want to be in a hospital bed. A sick baby doesn’t necessarily mind, just as long as no one is poking them with needles.
When we eventually got home, she immediately calmed. As Joe remarked, “She just wanted to be home.” Instead of being manic and unable to rest, like she typically is for 24 hrs post-transfusion, she played quietly and happily, and was able to eat, bathe, get ready for bed, and fall asleep with no problem at all. Chinese medicine says that the spirit travels in the blood. If that is true, it makes me wonder about the donor. Whoever it was, his or her blood didn’t make her hyper and seemed to agree with her.
Adahlia’s greatest joys still include reading picture books together, especially when I sing them to her. She adores games involving curtains and blankets, sharing (handing things to us), feeding (she like to put things in her mouth and ours), and turning things off and on. She’s figured out how to turn off and on my breast pump and it makes her ecstatic, rocking back and forth and squeaking, to keep pressing the button.
She can turn a light switch off when we leave a room, and can pull the chain of the bedside lamp to turn it on and off. I try to remember to let her do it for us, because she gets such a thrill from it. I think it makes her feel like a god, to be able to affect light like big people do.
And she shines on, brightly.