I want this update to sound upbeat and positive, but I am going to admit that Jeff and I are stressed, and it has been a bit of a roller coaster. The most important thing, however, is that our sweet Nico is resuming more and more normal activities and this brings great joy to all of us.
I think it is fairly normal for parents during front line chemo to imagine life in the maintenance phase (where we are now). We knew it would not suddenly become a walk in the park, but there have been some surprises.
The biggest surprise was Nico’s physical limitations. We kept Nico under wing throughout front line. He did not have play dates, and we did not take him to areas with large groups of kids (except the hospital). On our first trip to the park with two of Nico’s good friends, I noticed he would not climb the ladder on the jungle gym. He also refused to cross the playground bridge without someone holding his hand (his friends sweetly obliged). It was hard to determine whether Nico could not or just would not climb. But by evening, Nico could not walk at all and required that we carry him from room to room. The whole experience was bittersweet - elated to see him playing, but heartbroken to see him not able to walk again. The journey out of front line chemo is a climb, and we probably should have been expecting this. A few days later was Halloween, and Nico could not ascend porch steps while in a standing position. He was determined though and this did not stop him or take anything away from his fun (our little Buddha teaches us again). He crawled up the steps, held his friends’ hands, or demanded that his dad lift him. He had a great time. I do not think it is unnoticed by him though because he makes excuses like “my shoes are just slippery.”
We discussed these worries at length with Nico’s oncologist. Our doctor seemed concerned, but also stressed that Nico, and all kids coming off of front line, have to be reconditioned. The steroids cause a loss of control in large muscle groups, especially the quadriceps. His legs are weak. The Vincristine causes neuropathy, but Nico’s exam appeared normal on that front. The other concern is avascular necrosis (AVN). AVN occurs as a result of the chemo cutting of the blood supply to the bone, and the head of the bone dies. As I wrote in another post, it is not uncommon for older kids to require joint replacement after front line chemo. It is unusual for younger kids to develop AVN, but not unheard of. The oncologist asked us to just keep watch at this point and to keep pushing him. I can report that Nico is showing some improvement in stamina and has not complained any pain lately.
I already wrote that Nico’s introduction to school brought the hand, foot and mouth virus. That went off without a glitch, but was followed by a cold. He developed a fever with the cold, and that means an automatic trip to the ER for a needle sick, nasal scrub, and a lot of waiting around. Nico’s neutrophil count came back high and we were allowed to go home after a dose of IV antibiotics. A funny thing about that, we are accustomed to Nico’s neutrophil count being low. In clinic we talk about his count being over 500 as the threshold for when we can live normally. Of course, a normal neutrophil count is actually 3,000-5,000. So the resident in the ER told us that Nico’s count was “four-seventy.” So we thought it was 470, and that was close enough to 500 to leave. When we called oncology the next day to follow up, we found out his count was 4,700! I will be honest, I freaked a little bit. His counts have not been that high in at least a year. His counts are not actually supposed to be that high either. We want his neutrophils to stay suppressed (in the 500-1500 range). It is normal for counts to increase during an infection, and based on a nasal scrub done in the ER, we knew Nico had rhinovirus. But the nurse practitioner had to reassure me that it was OK for Nico’s counts to be high and it did not indicate anything more than a cold.
So we resumed normal life, thinking of the ER visits as pit stops, and went about our business. That was until I visited a coffee shop by our house and got a muffin for Nico. We have eaten muffins and scones from this place for years. The teenaged kid recommended a “power muffin,” the white board at the drive-thru indicated a few of the ingredients that all sounded healthy and unappetizing but I got the muffin anyway. I handed it over to Nico and long story short, the “power” muffin was actually a “peanut butter” muffin. I have never heard of such a thing. Usually there are nuts sprinkled on top when a muffin has nuts in the mix, but there was no evidence of peanuts in this. When Nico started to vomit and cry (after less than a bite), I tore the muffin open looking for nuts. I was sure that I did not see nuts listed on the ingredients, but his reaction was too similar to the time he ate cashew butter. I had a bad cold by then, so I couldn’t smell it. In less than an hour, and in spite of a large quantity of Benadryl, Nico’s airway started to close. He was coughing, wheezing and couldn’t talk. I gave him a shot of epinephrine in the leg (those poor legs) and we got to the ER quickly. It is actually a very long story, just suffice to say that it was upsetting for all, especially Nico, and I felt terrible. We had to stay in the hospital for the day because he continued to get hives and turn red even after we maxed out the dose of Benadryl and steroids.
So much seemed to be happening. During all of this, Jeff got a great job offer, but it is on the other side of the country. We showed up at our oncology appointment, and the oncologist joked that we are supposed to be coming to the hospital less, not more. He was concerned about the peanut exposure and elected not to put Nico under sedation for his lumbar puncture that week. This screwed up our home chemo calendar, and we ended up forgetting to give Nico the chemo that was due since he did not have the lumbar puncture! AACK! Too much, too much, we are overloading. We emailed our doctor when we realized, and were told that Nico is just fine and not to sweat the missed dose. Truthfully, both Jeff and I had a series of nightmares that week. I am sure a contributing factor was that we were hashing out just how we were going to relocate our entire family, across the county, and away from everyone that has supported Nico during all of this.
Honestly, I think I have avoided updating this site because I am still partially in denial that we have to leave. We are very sad and hate to go. But, we need a job. So on a positive spin, Jeff’s new employer is in the most southern part of Pennsylvania, and that is one hour from Johns Hopkins. We can live between Jeff’s job and Baltimore, and be able to take Nico to a national specialist in childhood leukemia. We trust our doctor here in Salt Lake, but have not been crazy about some of the support staff. It might be reassuring to get a second set of eyes to look at Nico’s case. So, to the East Coast we return. I know that we will be back to the West. I always end up back here eventually.
So Jeff left for his new job, and Nico and I stayed behind to tie up loose ends, finish the school semester, and prepare for our Make-A-Wish trip. Nico and I continue to head downhill with these nasty colds. I think we actually caught a second cold (maybe a third?). After almost a month of non-stop viruses, Nico spiked another temperature. Luckily, the fever happened during regular clinic hours and we were able to bypass the ER. The clinic experience was weird. The nurse practitioner and the doctor (not our regular) did not agree. The story is a long one, and this post is already too long. So I will just say that we were hospitalized this time. We stayed on a floor with immunocompromised kids, so Nico and I were relegated to isolation because our colds were potentially life-threatening to the other children. I could not leave the hospital since my relief pitcher is now living in Pennsylvania, but my dad was able to help for a few hours in the evening, and I took the opportunity to run to the urgent care for myself. So now I am on antibiotics and various versions of inhaled steroids. Ahh…
By the way, did I mention that I decided to try and potty train Nico during all of this? Somewhere between the anaphylaxis and second fever? BAHAHAHAHA! Yes, great idea! We were actually making progress, and then we were hospitalized, and I hit a wall. I essentially told him that I was too sick to coax him onto the potty and he was putting on diapers again . . . and probably going to have to potty train himself, at some point.
It has been a long month. The Year of the Snake has not been good to us, but it is ALMOST OVER! Oh yeah, I do not believe in bad luck. But seriously, I love horses (2014 – Year of the Horse!) and snakes just seem ominous anyway.
Nico’s Make-A-Wish trip is at the end of December and rather than fly back to Salt Lake City, we will fly to Baltimore (avoiding three hours of airplane germs and peanuts). It is with a sad heart that I write that we are moving. Salt Lake has been our chosen home for a few years now. We have grown close to many people here. We also feel incredibly indebted and overwhelming gratitude to the people who helped us through front line chemo with our sweet boy. We appreciate all of the people that love him here, and it is saddening and scary to leave you. But this is the direction our life path has taken, and we believe that there are wonderful things in store for us in the East for now.
Now, I am off to drink more cough syrup. Love to all!