posted on CarePages March 20, 2011
“Sweet are the uses of adversity.”
Busy, I guess, is a matter of scale. Brennan’s life, compared to most kids, is pretty loose. School, only three hours a week; hardly any homework; no sports obligations; no social obligations; lots of legos & movies… just living. But busy he is, and busy are we holding his hand and lifting him up until such time that he is capable of living as a nine year old should.
Walking into his “home” for the first time since January 8, I gently lift him out of the car for him to walk in the door. On my shoulder is the ubiquitous backpack, containing both IV feeds (TPN) and G-tube feeds. With the two pumps, bags of fluids, plus the miscellaneous accessories that go along with it (saline and heparin flushes, alcohol pads, nausea meds, pull-ups, baby wipes, etc) it is bit more than he can handle.
So I hold the pack, tethered to Brennan by the two tubes protruding from the zipper slot. I hold his hand as we walk up the two back steps to enter, with his brothers and grandparents inside waiting. Christopher and Nat have taken it upon themselves to decorate “his room” with St. Patricks day frills (green crepe paper streamers, strings of shamrocks across his bed, an Irish blessing plaque at his bedside and a huge “Fat Head” photo of him and the Brothers bursting through the line as they lead the Aquinas Fighting Irish onto the field last fall. Its a “welcome home” celebration, and they are jubilant.
His hands are shriveled. Holding his little bottom as he steps up the first stair, there is nothing but bone sheathed in chapped skin. “I got it,” he says to me as he takes the second, determined to show everyone that he is just fine. But as he crosses the threshold, his knees buckles and he collapses, fortunately close enough to me to avert disaster.
That was a week ago, Sunday. Yesterday, he is sitting up in bed talking about what we are going to do today. Watching him flush his central line after I disconnect the morning TPN feeds, he takes his eyes off of the TV, looks up at me and says, “you can hand me the heparin, daddy. I can do this part.” He is doing more than his part.
We are watching “Raiders of the Lost Ark” upstairs at “The Bluff.” Brennan’s room is here because, testing positive for VRE, he is in “isolation” status at St. Jude and therefore unable to stay in the Target House apartment, where other immune compromise kids could theoretically be affected by the bacteria in his system. We had hoped to return him from the hospital to Target because of the Heppa AIr Filter System, and the fact that everything is all on one level. The Bluff had been the domain of The Brothers (With visiting privileges still in place, they are still not allowed to stay in the same domicile until we hear otherwise from Dr. Leung. As long as colds and viruses remain a remote possibility, there are zero exceptions to this rule. Just last week Nat reluctantly and sadly accepted this reality because of sniffles which are most likely Spring Pollen related). But the Bluff it is, and has been for just me and my little soldier since Tuesday morning.
It is spring break in Memphis, and for the first time in our lives that we are spending it separately, but for very good reason. Tuesday morning, Tara left town with Nat and Christopher for parts east, including Sullivans, Island, SC for a long-overdue taste of salt air, and then on to Charlotte for the NCAA Tournament games this coming Sunday. School reconvenes next Monday, although it is expected that the three travelers will not be back until Monday evening or Tuesday, after making stops to see friends and family in Greenville and Atlanta along the route home.
Until then, it is just me and Brenny. His “uncle Morris “ (Moss) and brother Johnny volunteered some of their time away from their families Tuesday through Thursday to help us make sure that we had our feet on the ground, but mostly to see their hunting buddy and life hero. Being alone with just Brennan for a week, particularly just after discharge, takes a little time to establish a solid routine, with four daily doses of meds (representing buckets of pills and replenishment of both IV and Gtube feeds, dressing changes, cleaning, clinic appointments, etc.); therefore, having the Moss boys here for the first few days was a huge blessing. I have to admit being a bit nervous when Tara left, simply out of fear of missing something critical. But the Moss boys covered my back, making sure the house was clean, stocking groceries, and keeping us both in good company until they left Thursday, by which time Brenny and I had established a pretty solid groove.
But it is more than full time, driving home to me the extraordinary appreciation for single parents who perform the role as parents of cancer patients alone. Besides the meds, and other scheduled daily needs, he is still fighting the diarrhea and nausea, although much improved. Several times a night and regularly through the day, he is provided no warning for immediate bathroom demands. Also, the feeling of nausea persists almost constantly, but fortunately, it is controlled with regular meds.
Despite all this, I do see the gut issue getting better, which tells us that the GVHD is gradually mitigating. Without getting into the off-putting details of it all, suffice it to say that this part is showing daily evidence of improvement.
He is also improving, gradually, on the nutritional side of things as well. This week he actually lost a little weight (from 21.7 kilos to 21.0); however, this change has taken part during a transition where we gradually wean him from the IV feeds (which were 75% of his caloric intake as of Monday) to the g-tube formula solution, which is substantially fattier in consistency, and ultimately what will help jumpstart his gut into working the way it is intended. By tomorrow (Sunday, one week from discharge) he should be on target with the g-tube feeds as 100% of his minimal caloric intake, which we hope will be supplemented with normal food cravings.
As far as those go… well, the cravings are starting to rear their heads, but that’s about it. He will suddenly ask for a pice of pizza, or a chicken nugget, or a dinner roll, only to say, “I’m sorry daddy, for some reason I don’t want it any more.” Last night I made him pizza (then another slice because the first one wasn’t cheesy enough), a bowl of chips, bacon, cereal and milk, all of which were rejected at the last second. He did take a nibble of bacon, but he’s just not quite there. The good news is that the cravings are there, and he is drinking things besides water. It is our feeling that, once the g-tube feeds max-out and his digestive system starts to regulate itself a bit better, then the food requests will start to translate into meals and snacks.
Nutrition is ultimately what will make him stronger. Fortunately, his spirit and will-power remain firmly intact, and he remains complaint free. Nothing bothers him. Even a three am trip to the bathroom with soiled pajamas cannot render a whine. He knows he is out of the hospital and that, each day, he is one step closer to home.
He was discharged from the bone marrow transplant unit this past Sunday just before dark. Susan and Pat came to town over the weekend to allow me and Tara a chance to slip out for a short weekend excursion to Oxford, MS. What may on the surface seem like an odd time for a date represented probably the last and only opportunity for such an engagement for the foreseeable future. Now that he is out of the hospital, it is a big-time hands-on job.
Our weekend together was beautiful in every respect. The vibrant energy of this perfect little college town delivered just the right dose of nostalgia, liveliness and acer-vernalis. College students were out celebrating spring. Alums were in town for weddings, children were everywhere. For almost two days we were together for probably the second most important date in our lives (the first one is always the most important, right?). And to be quite honest, I was as nervous about it as I was the first one. But we arrived back in Memphis Sunday in time for lunch, stronger because of it. With Mimi and Pat Pat here helping with the boys, we were refreshed, and properly grateful for this milestone-day, that only weeks ago seemed unlikely.
For the third time in less than a year, the nurses on the BMT floor threw their signature confetti party, congratulating their BMT patients on discharge, while singing in unison the words to the discharge song (sung to the tune of the Oscar Meyer Wiener jingle), “pick up your things, walk out the door, and don’t you come round here no more.”
He didn’t walk out this time. The hospital providing him a kids sized wheel chair (which we keep in the back of the car for the majority of his peregrinations.). So around 6pm Sunday afternoon, we wheeled him out to the car. There was a tremendously bright sunset over the Pyramid as we walked west towards the car. The river has been close to flood stage for over two weeks, so anywhere within a mile or so of the great mississippi, the damp cool breeze is inescapable. That afternoon, it wrapped our faces with cold fresh air as we made it to the car. It was the first time Brennan had experienced the out of doors 63 days. “How’s it feel Brennan,” Tara and I asked him almost in unison. “Good,” he said nonchalantly. But looking at his eyes barely above his protective respiration mask, you could see his them smiling, and shining as bright as the sun in front of him.
Each day this week has represented another baby step of small improvement. His counts continue to remain strong. Indeed his ANC remains on the super-high side of the scale, in the 8-10,000 range. His platelet counts continue to improve. His hemoglobin is steady. A number of the nutritional barometers make daily swings (electrolytes, potassium, phosphorus, etc.) but, in our current frame of mind, those are details.
Yesterday he walked up the entire flight of stairs to his bedroom, one foot-one step at a time without stopping. Winded? sure. But up to that point he has struggled to walk two feet per step with my help. A week ago, he couldn’t make it in the house on his won.
And we’ve even taken small excursions out and about. Wednesday was his first day with no clinic or doctors appointments since Christmas day. The Moss brothers and I took him to a shady place in Overton park, where we had a picnic together and watched the countless families enjoying the simple pleasures of their own spring breaks, flying kites, walking their dogs, throwing balls… Since then, like the food cravings, he is starting to ask to do things.
All of this has encouraged him to get his new putter cut down to his size (his grandmother Rice bought him a new adult sized putter for Christmas per his request) and a kite, which we hope to fly this weekend.
Regarding the putter, when it was presented to him with its new cut-down kid length, we had a putting contest at the little indoor putting green of the golf store. He only made it through seven holes before getting winded and needing to sit back down in his wheel chair. He beat me by 3.
Walking out of the store, the manager remembered Brennan from last year and asked about everything. After I told him that we had achieved remission again, Brennan asked me as we walked to the car, “Daddy, what’s remission mean?” “Well,”I said, “Remember the ‘MRD’ being negative? that means that you don’t have any more leukemia, so you’re in “remission’.”
“Hmmm,” he said looking at the putter in his hand. “That’s pretty cool. I guess now I need to get rid of those bad GVH cells that are still in my body.”
“Brennan,” I said hugging him as I lifted him into the car from his little chair. “You’ve got the right attitude. I cannot tell you how proud we are of you.”
Later that night, Tara called from Charleston. The boys were all having a blast, having just had a fishing excursion, and a couple of outings with friends at the beach and the pool. Having just finished dinner with the Eischeids, which included some other friends and their children, Christopher spoke to his mother on the way home about meeting new kids in new places. “Mommy,” he said with s serious voice. “I really liked the kids we played with tonight, but I don’t want anyone we meet to think that I only have one brother. Brennan is part of our family and I want people to know him.”
“Christopher,” Tara said. “You’ve got the right attitude.”
Friday night at the Bluff, Brennan and I finally finish watching “Raiders of the Lost Ark, having paused it at least three times throughout the week. He asks me to turn off the TV and turn out the light, as he turns over and closes his eyes.
“Would you like for me to say our prayers?” I ask him. He rolls over, looks me in the eye and says, “Daddy, I think that’s a good idea.”
“Now I lay me down to sleep….” we go through the ritual as he drifts off. Laying there in my own thoughts, I think about the things I pray for that, for whatever reason, I leave out of the spoken bedtime prayers with the boys.
Looking back at that sacred memory as I write this, I do not think my lap top has enough memory, nor do I have enough stamina, to write as much and as quickly as the many things and people I am grateful for and for which I pray. But, although our little family is apart for the time-being, staying in this house right now with Brennan is perhaps one of the greatest gifts and honors I will ever have. We are blessed to have him here with us. And I am so grateful to have a wife who, when it came down to the really hard decisions, believed in Pressing On.
But for that, who knows. But for that, we are still walking the path; each little step bringing us closer, strengthening our faith in each other and in all that we believe.