Kindnesses - Walking the Walk

Recently I commented how wonderful was the story about how a 7-year-old boy being treated for acute lymphoblastic leukemia was made an honorary police officer (link to WABC article). Everyday people are doing special things like this for sick children they don't know, yet care about; most of the time these kindnesses go unreported. Sometime soon I'll write about the postcards my son received, but today I'd like to relay another kindness afforded him.

Chemo attacks quickly-dividing cells. This is how it targets cancer, but it also goes after other, healthy cells -- thus hair loss and so on. One of the many side-effects of chemo is that it causes strange sensations and muscular weakness in the arms and legs. It diminishes a child’s willingness to be ambulatory or active. And so, a seemingly healthy, energetic child can melt away to be confined to a wheelchair in just a few weeks.

Muscular deterioration has been a major issue in our family. My son has quickly gone from being a runner to only being able to walk with the assistance of a walking stick or a wheelchair (and can barely manage steps). We have talked to nurses and friends about this. They share my worries about him losing self-confidence via a loss of mobility. As many of you know, self-confidence is the best medicine for managing chemo side-effects.

Our worries reached the ears and hearts of a local gym. Yesterday my son was extended a 6-month gym membership at Midway Fitness. He was greeted with a cheery smile and the moral support that he will need to fight his way back to health. This simple and yet generous gift will be life-changing for him.

Now not everyone can offer a gym membership to someone fighting cancer, but if you are looking to do something for someone, try offering to walk with them (and not just metaphorically). Help them get out and feel normal, even if that means pushing a wheelchair or shuffling along with them. Thank you to the people at Midway Fitness and Racquetball for the offer to walk with us.

-PG Somerset

Torching the Normal - Busy Making Other Plans Blog

I met this amazing family while staying at A. I. duPont (Blog Link). Our sons' rooms were two doors down (I know that's a cheap 90's pop music reference but hey...why not). Like so many of our neighbors, we walked a lot more than the same hallway. Both Nate and my son have developmental issues which make the dynamics of leukemia slightly different. Like his parents, leukemia was not the first bit of challenging news our family faced. And that is how many of my son and my treatment-neighbors think of this cancer, as a challenge.

Each parent comes to understand that they have only two options: face it or flee. Were we to flee then we would be running away from our own children. This reality makes the days when you are overwhelmed and can't face everything much harder. Each parent deals with this reality in their own way and yes, some do flee. Don’t judge them; instead pray for them. Imagine the torture they are enduring. But the parents I most respect are the ones who know when they need to get a cup of coffee or a visit home. 

Finding one's center in a world full of chaos is not always possible. You might have forgotten how to find it or can't afford the time to look, but it is there. It is nearby and can be touched by performing simple acts of normality. For me it was walking to the food pantry and getting a carton of milk or a yogurt, or making a peanut butter and honey sandwich for my son. In my mind it was like going to the grocery store, and it gave me the break I needed to think about things I could not think about in front of my son. It was also a hunter/gatherer act that helped to assure both of us that I could still provide for him. Believe me, there were quite a few walks to the pantry.

Touching normality does not need to be any grand gesture and, face it, who would have the energy to do it anyway? For each parent there is a different way of facing the cancer storm. I love the openness and kindness in my friend’s blog. It is full of those moments. I also love that there is a happy ending (http://busymakingotherplansblog.org/). If you need an uplifting biography about how one family copes with more than they thought they might be able to -- then please have a read. And if you are in need of ‘touching normality’ then just look up and around. There is something near you that will help.

PG Somerset

Sleeping at A. I. duPont

 

After five plus weeks in the hospital with my son (but who was counting) I was totally shattered. The whole time I knew (and worried) that I had to stay healthy to be with him. This meant trying hard to get some sleep at night, but also sleeping somewhere out of a draft. I am apt to get a sinus infection if I sleep too many nights in a drafty place. To avoid this I took a page out of the Georgian’s handbook (18th century Britain – i.e. Jane Austen, Henry Fielding, and Mary Shelley - Not our beloved relatives three states to the south) and build a canopy to sleep under. It worked well. I do have to emphasize that if you find yourself in need of a bed at A. I. duPont and use this as a guide - be very careful with the TV. I wouldn't recommend hanging the canopy unless, like me, you really need it. I used a thin top sheet because it was the lightest weight.

I did find that just sleeping with my head under the TV cut down on the amount of forced air blowing on me. One final thing, yes I put this together every night and took it apart every morning but one. Sometime I'll write about the routine we kept so that we stayed sane-ish.

PG Somerset

The Orcs and Castles and Neutrophils of Cancer

Life with cancer is tied directly to one's Absolute Neutrophil Count or ANC (not the African National Congress). They are a measurement of how robust a person (or your child's) immune system is.

Because I like analogies, and because I have boys, here is how I think of Counts. Your child's body is a stone castle with a mote and drawbridge and all that. His or her ANC is therefore the measurement of how thick the castle walls are. Your child's castle (or body) is under constant siege from orcs (germs as well as the cancer) who really want to get inside and mess the place up. So obviously the thicker the walls are, the better the chances is of keeping the orcs out. The trouble is that both the cancer and the chemo undermining your child's defenses. Bits of the castle’s fortification keep falling down, and the very skilled builders (white blood cells called neutrophils) that can repair the damage keep getting squashed under the rubble. More builders can be trained to help rebuilding the castle's defenses, but it takes time to train them. In other words, it takes time for the body to make new neutrophils to combat disease. When the walls are thin your child’s ANC is low, when they are higher the body is healthy.

Normal - 2,500 and 6,000

At Risk - 1000 and below

Understanding these numbers is a basic tool during treatment. Sometimes the castle is well defended, while at other times...not so much. Treatment can only happen when the walls are strong enough to handle friendly fire (or chemo). If it isn't then the large sections of walls could collapse. And that would be really bad.

Delaware Wings - Good Chemo Food

(Sweet and (not so) Spicy Breaded Boneless Chicken ‘Wings’)

This isn’t something that I would cook every day, but it is a fun treat of a meal. I’m not a chef, I’m a cook. Day-in day-out I prepare meals for hungry mouths. I don’t do fancy, I do tasty. This entrée is high in flavor and in calories, which is what most chemo kids need. My family is split on the topic of spiciness. These ‘wings’ can be as spicy as you like by adding more hot sauce or a small, diced hot pepper into the sauce recipe. Where this recipe really shines is in the breading. Because it has brown sugar in it, the sweetness brings out the flavor of the hot sauce while knocking back the heat. Served with a veg, this entrée can be a balanced meal when your kid’s appetite may not be great. It also reheats well.

Meat

2 lbs. of Chicken Breasts and/or Thighs

Spicy Sauce

2 table spoon Butter

2 table spoons of Hot Sauce

(I use Lewes Road Kill because it’s my son’s fav, but others work too)

2 teaspoon Smokey Hot Paprika

1 teaspoon Granulated Garlic

¼ teaspoon Salt

Slice chicken into strips or ‘wings’ about two mouthfuls in size. Pat them dry with a paper towel. In a bowl melt the butter and then add in all the Spicy Sauce ingredients (I use a cereal bowl for this). Slide the ‘wings’ into a plastic Ziploc bag. Pour the sauce in after it, and squish it around until all the chicken is covered.

Allow the chicken to marinate in the bag somewhere warm (a counter top or table) for about 40 minutes. After marinating, spread the chicken onto a broiler-safe wire rack or on a broiler pan. Space the strips so they are not touching and then place the lot into your broiler. Cook for about 5-6 minutes, and then flip each strip and broil for another 5-6 minutes. The strips should be cooked through so they are the palest brown on the outside, contrasting with the darkness of the marinade. Take them out of the broiler and let them cool.

If you are cooking this for a future meal (a post-transfusion meal, or back home late from a treatment) you can let them cool, sling them in a fresh plastic bag, and plunk them in the refrigerator or freezer. When handling the ‘wings’ I still treat them as raw, even though they’ve been cooked on the outside. If you want to eat them the same night, then it’s time to get ready for the breading.

Sweet Breading

2 eggs

2 cups of Breadcrumbs (I use either Blanco or Traditional)

½ cup light Brown Sugar

2 tablespoons Wheat Germ

½ teaspoon Salt

In a pan (I use a 14’’ cast iron skillet, but two rounds in 10’’ skillets would work well too) with enough oil  (corn, canola, coconut, etc.) to cover the bottom, start heating on high. In one bowl beat the eggs lightly; in a second bowl mix the dry ingredients. Coat each ‘wing’ with egg and then do the same with the dry ingredients. Press the crumbs so that they cover and cling to the ‘wing’. I lay them out on a plate after breading so I can cook the whole batch at the same time. Once the chicken is ready and the oil is boiling, slip the chicken into the pan. Cook for about one minute and then flip each ‘wing’, and then flip again. Keep doing this until the breading is a deep, dark, golden color and the chicken is white (if you used breast meat), or caramel (if you used thigh meat). Either way, the ‘wing’ should easily cut with a fork. Once they get to that point, pull them off the fire and pile the ‘wings’ onto a plate. It’s time for the tasting. I would suggest honey mustard for dipping, but first try them on their own. You might find they don’t need anything else. I serve them with Brussels sprouts. Enjoy.

-PG Somerset

PS - If you have food ideas that are rich in flavor and kid friendly please send them along.

Beads of Courage - A long view

There is a charity called Beads of Courage that helped our family in a very interesting way:

We were told about it as we settled into hospital life. For every poke, suck, and therapy there is a bead. At the end of our first hospital visit (5 1/2 weeks, but who is counting) the nurses helped my son and I look back over the treatment and fill in his Bead Card. It was a time to reflect on just how far we'd come in a chronologically short time. During the stay there was no time to look at the big picture; it was day-after-day of just trying to keep up. Filling out the card helped us understand the long view.

If you are in the middle of your first stay and the world won't resolve itself; if you feel like sleep happened long ago in a distant memory, know this: there is a long view. Even if you feel like you're walking in circles you are in fact getting somewhere. Even inching forward is still movement. The Beads of Courage are a small reminder that things are changing and progress is being made.

Please have a look I think they are remarkable - Beads of Courage

-PG Somerset