About a month ago, I mentioned that a hematologist had told
my husband that
his
body makes too many red blood cells. At the time, I didn’t really
understand the impact this diagnosis was going to have on my family. All I knew
is that we didn’t have to eat a “low purine diet” for gouty arthritis and I was excited.
This past Wednesday, my husband had a
bone
marrow biopsy to confirm a
Polycythemia
Vera diagnosis. We don’t have the final results yet, but the hematologist
said he’s pretty sure my husband has “P Vera.”
 |
| Saline drip after Phlebotomy. |
The main treatment for P Vera is
phlebotomy,
which my husband currently does on a weekly basis. After speaking to the
hematologist, he will have weekly phlebotomies for the next 4 to 5 months. The
other treatment possibility is
chemotherapy
drugs, since they suppress the production of red blood cells. When I heard
“chemotherapy” – my mind kind of went blank. I, like many people, associate the
word “chemo” with “cancer.”
However, P Vera is not cancer. Chemo drugs are considered
“broad spectrum” and can be prescribed for other conditions that are not
cancer. P Vera is a Myeloproliferative Neoplasm, meaning it’s a disorder of the
bone marrow. It’s caused by a genetic mutation, and funny enough, his mom has
the same condition, though it hasn’t been proven to be a genetic condition.
The good news with P Vera is that even though it is a chronic condition like asthma or diabetes, it's treatable. And, the extra red blood cells
are normal. They are not mutated and they won’t cause the other cells in the
marrow to mutate into something abnormal. The bad news is that my husband’s
blood viscosity is thicker, which is a serious health risk. He could get blood
clots easier, not deliver oxygen to his vital organs like the brain and other
tissues, and he is at a higher risk for stroke.
Did I mention that he’s only been 36 for two weeks? 36. He
has 14 more years until he hits “middle age.” Our lives are just getting
started!
In the midst of all these doctors’ trips and diagnoses, my 2-year-old
daughter did question the multiple bandages and gauze/wraps on husband’s arms.
The best I could come up with was, “Well baby, your daddy went to the doctor so
he can feel better.” Now every time she sees my husband with a wrap around his
elbow, she says, “Daddy had to go to the doctor? Make you feel better.”
But with the looming possibility of my husband taking
chemotherapy drugs, and knowing these drugs (while helpful) are quite toxic to
the body, I can’t help but think of the horrible side effects they can cause.
How am I going to explain things like my husband’s constant sleeping, vomiting,
or the fact he might lose his hair to our daughter?
So with all these questions, I called a close friend of mine
today who is a Psychologist that specializes in Childhood Development. We’ve
known each other since our 9th grade year in high school and I 100%
trust her opinion. The first thing she did was reassure me. She also said that
my gut mommy feelings were pretty spot on, which makes me feel pretty good. The
second thing she did was vocalize thoughts I had, but didn’t know how to put
into words.
Her advice was to follow a strategy that I’ve already
started:
1) Keep phrases and explanations developmentally appropriate. I find
it very easy to overcomplicate situations by being too wordy. I could see
myself going overboard with detail about her daddy’s condition, drowning my
poor kid in details. And the fact is, she simply won’t understand. Her brain is
not developed enough to understand abstract concepts like the organ systems of
the human body. But saying something like, “Daddy has those ouchies because the
doctor is going to make him feel better” is a more developmentally appropriate
approach.
2) Explain how the situation will relate to her. Toddlers will understand a situation better if you can relate it to something concrete that they
already understand. Taking the “Daddy has those ouchies” phrase further, I
could add, “so when he does feel better, he can play with you more!” Or if my
husband is fatigued and goes to bed ultra early, I could say, “Daddy is tired,
so he’s going night-night. Just like you get tired and go night-night, too!”
3) Set expectations by giving her examples of things that might change.
It is important to make sure my daughter understands what’s coming. If we don’t
prepare her, she could become scared because the change is perceived as
unexpected. For example, one day her daddy has hair, another day, clumps of it
have fallen out so he’s partially bald. So we could show her the pills daddy
will have to take and say, “These will make daddy feel better, but they might
make daddy’s hair go away.”
4) Let her “play” with some of the items that may have to be used for
treatment. I’m not really sure what we would have for her to play with that
would be involved in my husband’s treatment, other than bandages or a bottle of
pills (which I wouldn't let her touch). But I figure this might be a good idea to expose her to anything "weird" (provided equipment is involved),
so she understands and isn’t afraid of what to expect or see.
This is definitely a work in progress for me at this point.
We are still in the early stages of treatment, but will be in it for the long
haul. The most intense portions will be the next 6 months. Wish us luck, and
let me know if you have any pointers on how you would explain illness to your
young child.
