Wordless Wednesday: Daddy Piggyback Ride

How I Explain Serious Illness to my Toddler

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 9^th 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.

Wordless Wednesday (Late): Love