Another Week
Another solid report for Jennings. His labs look even better than last week with his hemoglobin and overall red blood cell count slowly inching upward. They have been stagnant at below normal levels for weeks, so that was good to see. His weight is still holding steady. Not losing, but not gaining either. He is not quite able to consistently take in enough calories to offset his activity level. He’s getting creative thinking about how to bump the scale and has started growing some hair back hoping that will at least add a few ounces. This is the first week where the new growth is evident, even leaving a darkened shadow line along his head from across the room. It will probably be the same dark, coarse, unruly mop that grew back after transplant #1, but it’s gotta start somewhere.
Other than that it was a pretty blah week of appointments, which is not a complaint - that is what we want. He had a quick leg x-ray to rule out any type of fracture in his shin where he is incredibly sensitive to the touch. The mystery continues on that one, but it doesn’t seem to bother him walking or running, only if it is touched. I got scolded a bit for “increased sun exposure.” That was the first question Aimee asked, then she encouraged me to be honest while commenting on my tan. I was, and admitted we had been out a bit, but defended our protection measures. She conceded that he did look ok overall, but his hands and ears are on the pink side. The poor kid wears a long sleeve SPF shirt, a baseball hat, and sun scweem (which he hates by the way…so maybe a subconscious mix-up on the pronunciation) on any exposed skin every time we go out to play.
Things like the sun exposure, germ exposure, etc. are real risks. Sunburn could cause his new cells to flare up and, in an attempt at healing, cause skin GVHD. That could mean immunosuppressing steroids for treatment, which could in turn open the door for AML cells. But while they are risks, we have also been given this time with him and want him to experience life during it.
Both Lauren and I have been reflecting on the special time we have had with him. He is around a lot. A lot like all the time. And he has adapted to it. He doesn’t ask about school or complain about always being with mom, dad or both. He’s even become receptive to mommy’s affection, letting Lauren love on him almost whenever she wants. That’s a marked improvement from when he was first discharged and would not even make eye contact with us.
The special time is a blessing to be sure. At times, though, we struggle with how to think about it. Is it a gift from the Lord to fill a tank so that we have an incredible memory reserve to draw from if the real thing is no longer possible? Or is that reading too much into it and it’s just another heart breaking sign that chunks of his childhood are being taken? Under normal circumstances, he should be in school like the others and his time around us would be limited by that.
In the moment, having a six-year-old boy who is very comfortable with you can tip towards an irritation. Jennings sits next to me at the table and has no regard whatsoever that I am actually trying to eat. In his can’t-sit-still way, he is usually pulling on my arm with both of his or attempting to wrap his leg around mine under the table. Whenever I sit down on the couch, he is instantaneously jumping on my shoulders and neck like some sort of spider monkey. I tell myself over and over to be patient. Is he like this to fill that tank faster and higher? We sure would regret looking back on these moments wishing we had listened to ourselves. Or worse yet, longing, willing to give almost anything, for more of them.
Picture break. A few from this week. Top, out for our first family restaurant patio visit. Bottom left, Twister. Bottom right, case in point.
I’ve shared before about our passion around advocacy for childhood cancer and specifically, pediatric AML. Lauren ran an incredibly successful Woman of the Year campaign for LLS last year. We were both passionate then. We are even more so now, so I interrupt this blog post for some advocacy work. There are more pictures at the end…and maybe even a video, so please indulge me for a minute before scrolling on.
I’ve been reading several cancer books along with a myriad of medical journal articles and clinical trial results. Yes, the latter are quite riveting. All of the content has given me an even deeper appreciation for the complexities of the disease known as cancer. Our crash course in AML had given me a decent foundation over the past three and a half years, especially since it is such a heterogenous type of disease. It is a disease of genetic mutations. Normal, healthy cells gone bad. Often times by an ever so slight change in a gene. The likelihood for these changes, these mutations, increases significantly with age. Almost guaranteeing that if you live long enough, you will develop a cancer.
As a result, in an absolute sense, the complete cure becomes an enigma. A vain grasping at the wind. No less daunting than halting the entire aging process itself. And, now the cancer books don’t talk much of this and the journals certainly don’t mention it, but theologically speaking, we live in a broken and fallen world. We will no more completely eradicate deadly disease than we will completely eradicate sin from our hearts, this side of Jesus returning. But, just as we do not stop pursuing holiness and fighting sin, we do not stop researching and fighting cancer. No. In fact, I would argue that we fight all the more to force it to only be what it will inevitably be: a disease of very old age.
I love this quote by Richard Doll, an epidemiologist famous for linking smoking to health problems. The quote is mentioned at the end of The Emperor of all Maladies: Death in old age is inevitable, but death before old age is not. There is no more succinct reason to invest in the fight against childhood cancer than that.
To this end, please join me in supporting Lauren’s current fundraising efforts. She is a team member this time around helping again to raise funds for LLS through the Man & Woman of the Year competition. This week, teams will get a bonus for the number of donations, not amount but number. A $1 donation counts. You can donate here.
And now for your hard-earned pictures.
From the weekend. L took a trip back to Charlotte with her Memphis friend, Kelli…couch hunting. If we can’t do the reno for a bit, we at least wanted to be able to fit us all on one sectional. Pete, Kelli’s husband, and me held down the respective forts in Memphis. We packed all seven kids up and took them to their family farm on Saturday…top left, Ranger rides were a big hit. Top right, working for lunch. Bottom left, Friday at the park…they were holding hands right before the shot, little kids sticking together. Bottom right, enjoying the spoils of having a big sister who got invited to a birthday party.
The Charlotte side of the weekend. Lauren got to meet our new niece for the first time, had dinner with friends, and accomplished the mission.
The sweetest part of the weekend was seeing Jennings and Captain, the black lab in the video 👇. He was terrified of him, like he has been with all dogs, when we got out there on Saturday. I had Jennings on one leg and Smally on the other. As the day went on, everyone warmed up to the dogs, but Jennings fell in love. He would look up at Captain with awestruck eyes, gently petting him.
“For everything there is a season, and a time for every matter under heaven: a time to be born, a time to die; a time to plant, a time to pluck up what is planted; a time to kill, a time to heal; a time to break down, a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance; a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; a time to seek, and a time to lose; a time to keep, and a time to cast away; a time to tear, and a time to sew; a time to keep silence, and a time to speak; a time to love, and a time to hate; a time for war, and a time for peace.” Eccles 3:1-8
#allinforjennings