Nico seems improved. He is smiling and laughing again. He expresses an interest in food although he does not actually eat yet. It seems we have watched Max and Ruby for about 23 hours today (OK, I’m exaggerating). But I prefer Max and Ruby to watching a pale and bloated version of my child sleep all day. His counts are still very low, however. His neutrophil count is basically holding steady at zero. So he is at high risk for a bacterial infection. His hemoglobin and hematocrit remain very low as well. He is bordering levels that historically required a blood transfusion, which we prefer to avoid. But Nico’s monocytes and platelets are increasing and this signals that his bone marrow is considering a recovery soon. I cannot imagine that there is a nicer room in the hospital than ours. But there is really no such thing as a nice room on a pediatric oncology unit. And Nico is not allowed to leave this space. Even the best room in the house starts to feel like a prison when you cannot leave it. Nico, who definitely has at least one virus, poses a deadly risk to the other kids here. No one comes into our room without a mask, paper gown and gloves. Everything that comes into our room is treated as hazardous when it leaves. We would not recognize any of our nurses or doctors since all we have seen are their eyes. This gets tiring after a few days. As mentioned, we are right across from the helipad. I think this is more exciting for me than for Nico. This is how I passed time over the last few days. There are a few different helicopters that land here. I am assuming I have watched at least a few different pilots come and go. I have watched long enough that I notice that each pilot flies a little differently. I do not know why. Maybe it depends on the level of urgency, purpose, the time of day or night, or just their personal style? Anyway, I would love to liken this observation to our journey through treatment, our different doctors, nurses, and how strange and nuanced healthcare actually is, but I think I am delirious from cabin fever, head congestion and lack of sleep. Hoping for better counts tomorrow. We are in-patient for Christmas with parainfluenza, neutropenia, fevers and possibly a gastrointestinal virus. I am so relieved. I know it sounds crazy. But last night the ER nurse mentioned that they are seeing a lot of kids with severe joint pain that end up being diagnosed with viruses. She told us this before Nico’s viral panel came back positive for parainfluenza, and before I mentioned he was having terrible knee pain last week. Maybe the intense pain was at least exacerbated by this virus (probably more than one), and not a semi-permanent-while-on-treatment state? Nico has been counting down the days until Christmas for weeks. When he realized we were not leaving the ER, he had a complete meltdown. Not in the spoiled-brat kind of way, but in the my-heart-is-broken-with-disappointment kind of way. So we all had a moment, but that moment is over now. And I have to say that this is not the worst place to be on Christmas Eve so far. Crazy, right? But a lot of people do a lot of volunteer work to make that statement true. I will just list of how thoughtful people can be (and keep in mind that we have not even been here for six hours): remote control robot (batteries included); retro lunchbox with puzzle inside; numerous Matchbox cars; a gift bag containing Kleenex, toothpaste, breath mints, hand sanitizer and other useful stuff; a giant strand of Xmas lights to decorate our room; a bottle of root beer disguised as a reindeer, cute straws, cups and directions to make root beer floats (ice cream at the nurses' station); the sweetest, softest little blanket from the Linus Project; snowman craft; cards and signs (from very artistically talented youth); and candy (thankfully nut-free). I am so touched. Apparently last year, Santa paid a visit via a helicopter. Man, I hope they do that again because our room is seriously right across from the helipad. And to all a good night! If you are looking for an upbeat, light and fluffy holiday update, stop reading now. We are in a rough patch. No holiday card this year, sorry. Maybe New Year cards? At this point we might be eating frozen pizza for Christmas dinner. Last clinic visit went pretty well. It was the start of Cycle 6, which means a lumbar puncture. Lightening struck twice, and Nico tolerated the procedure in clinic without going to the dreaded OR. Nico’s counts (bloodwork) looked pretty good except that his liver enzymes were slightly elevated. This is not unusual for kids in treatment, and they let their enzymes get very high before they consider any intervention (usually a chemo hold). We were not even close to the range that would require a chemo hold. I have mentioned before that I communicate with other ALL parents via a list serv and through a couple of Facebook groups. Several months ago, there was a discussion about “checking the metabolites” of one of the main chemo drugs, “6MP.” This is basically done to ensure the body is metabolizing 6MP into the desired, anti-leukemic metabolite. 6MP is the drug that we have essentially given everyday since we started the maintenance phase of chemotherapy (14 months ago). We asked our oncologist to check Nico’s metabolites, and as usual, he did a lot of teaching, and explained why and when he would check. Our oncologist stated that he was open to the idea, but that Nico needed to be on a steady dose of 6MP to get an accurate reading. He was fairly confidant that he already knew what the results of the metabolic test would be based on Nico’s blood work. Generally these metabolites are not checked absent consistently elevated liver enzymes and/or consistently high neutrophil counts (evidence there is not enough bone marrow suppression). Our doctor was still game, however. We had adjusted the dose of 6MP a bit, so we waited a few months before drawing the metabolite. This level was finally drawn in clinic last Tuesday, but the results can take a while. The day after our clinic visit, Nico started to have issues walking while we were out running errands. He had seemed his usual self earlier, but by evening he hobbled over to me and asked me to carry him. He started crying and told me that his knee really hurt. I could see by his face that he was in pain. This kid is tough. He takes falls often. He almost never complains that he is hurt. He despises taking medication, and knows that he will have to if I suspect he is hurting a lot. So he will deny pain until it is very severe. By the time we got home, he could not even stand on his left leg because his knee hurt so badly. It is very taxing on a parent to see your child suffer like this. The Oxycodone takes about 20 minutes to start working, and it is a very long 20 minutes. Nico was writhing in his bed. He used his blankie to splint his knee and wept from the pain. It takes all of my strength not to cry in front of him. We finally got his pain under control with Oxycodone. But it was very odd timing. He has never before experienced pain this soon after chemo, and both Jeff and I were worried. The next day his pain continued. He woke up screaming in the middle of the night. Again, we were able to control it with Oxycodone. The symptoms alone are not unusual, but the timing was and this increased our anxiety because we have been warned several times that Nico’s pain, caused by the Vincristine, will progressively worsen throughout treatment. When the frequency of these spells increase, your brain automatically replays this warning and you wonder what this is going to look like a year and a half from now. By Thursday night, Nico was not only in pain, he was not eating and woke up vomiting. He stayed home from school on Friday. Again, something he almost never requests. Nico has a peanut allergy, but tested non-allergic to walnuts. Most commercially available walnuts are potentially contaminated with peanuts (based on labeling). So for our holiday tradition of Baklava, I specially ordered walnuts from a farmer that grows and processes walnuts only. I stayed up late Thursday so that Nico could take the cookies to his teachers as a gift on Friday. So Friday morning, it becomes clear that he is too sick to go to school, but I plan to still drop the cookies off by lunch. Nico tries a bite of a cookie, the first time he has had walnuts in some time. He instantly stops and says, “there are peanuts in these.” Jeff and I reassure him that the cookies are safe. He tells us that the cookies are bad and he does not want anymore. As the morning progressed, Nico acted more and more ill. I got nervous. I called the clinic and told the person on-call that my son was off – nauseated, in pain, lethargic and “just not right.” I also emailed our primary oncologist. We were waiting on the metabolite tests, but I did not think it was related. Our oncologist thought it sounded like Nico had a virus (he also had cold symptoms). The on-call oncologist thought he sounded constipated. But while I am on the phone with the on-call oncologist, Nico’s says “my back tongue hurts,” and his lips started to swell. Within minutes, his lips were 3-4 times their normal size. If I give you every detail, this will be a novel. But based on the on-call oncologist’s instructions, Jeff insisted Nico take Benadryl and we end up in an urgent care. We told the urgent care doctor that Nico was in treatment for ALL and she wanted nothing to do with treating him. She kept saying, “This is complicated.” She wanted to call an ambulance. Again, I am skipping most of the details here, but Jeff, Nico and I end up signing some paperwork absolving the urgent care of liability, and drive Nico to the clinic. Frankly, we really just wanted to take Nico to clinic anyway because we do not want any other nurses accessing his port. But we needed to make sure Nico’s airway was stable before making the 20-minute drive. By the time we got to clinic, the second Benadryl had kicked in. Never were Jeff and I so grateful that Nico was on steroids. The steroid pulse enabled us to skip the epi-pen. Add walnuts to his list of allergies. Chemo can intensify and increase food allergies. We will not know whether this is permanent until after treatment. While we were in clinic, a PA that we are particularly fond of examined Nico and said he was very constipated. So we were sent home with instructions to give Nico a laxative, along with Benadryl and steroids for the next 24 hours. It made a lot of sense that Nico would be constipated because he had been getting a lot of narcotics, which are notoriously constipating. So basically Nico had a cold virus, constipation caused by narcotic use, pain caused by chemo, and a severe allergic reaction to walnuts all at the same time. By Saturday, Nico seemed a lot better. Then Sunday came, and both Nico and I fell sick again. I had an earache, and again, Nico was in pain, not eating, not drinking and very listless. By Sunday night he had diarrhea and a fever. By Monday I was again worried and emailed our primary oncologist. Our oncologist emailed us back immediately. Nico’s metabolite test returned finally. The results are pretty much as bad as they possibly could be. People metabolize drugs differently, and 6MP can be metabolized in two very different ways. One way is anti-leukemic, and results in “the good” metabolite. The other way is not anti-leukemic, and is very liver toxic. Our oncologist called this “the bad” metabolite. Nico’s body essentially processes 6MP almost entirely into the bad metabolite. Jeff and I were gob smacked. Our oncologist asked us to stop all chemo and come back to clinic in a week. He wrote that Nico’s illness was likely a result of a virus combined with a sick liver from this bad metabolite. Jeff responded to our oncologist by explaining that we felt as though we had spent the last 14 months giving our child a poison that served no purpose other than to injure his liver. We were also extremely afraid of the implications on treatment success. We needed a silver lining. Our doctor called Jeff right away. Our oncologist offered reassurance, but we would be lying if we said we were not scared. The doctor explained that this is the reason that so many different drugs are used. Where one drug does not work, another can. So the first course of remedy is to temporarily stop all chemo so that Nico’s liver can heal, and then only restart the 6MP at a very reduced dose. But Nico’s blood counts still need to be suppressed, so another drug that Nico takes weekly, Methotrexate, will be increased and titrated instead of the 6MP. I have some trepidation about this because Methotrexate makes Nico sick. There is also some research that adding a drug used commonly for gout, Allopurinol, can somehow remedy the metabolism issues with 6MP. I do not really know enough about that right now to write more. Of course this means that we are going to have to be in clinic a lot more because we are back to adjusting doses and medications. Sigh. Our doctor also reassured Jeff that Nico has had really great marrow suppression through maintenance. He reminded us that suppression, not the amount of drugs, is what is correlated to treatment success. He said that Nico had better than average suppression and that these results would absolutely not affect his long-term success. This is what we wanted to hear, but we are both terribly worried. This week has been very stressful. Currently, Nico is lying next to me with a fever that is right on the border of needing to take him to the ER. Sometimes both Jeff and I feel the stress of all of this has caused us to crack. We find ourselves doing bizarre things. Sleepwalking through things that do not require intense concentration. At one point today, I felt dizzy, like I had been drugged, but I realized it was stress. We both get fatter and greyer at what seems an exponential rate. Luckily we have many supportive people in our lives. I am usually anti-pity-party, as everyone has his/her problems in this life. But seeing my child suffer feels like karmic punishment at times. Tonight, after I gave Nico more Oxycodone, he said, “Sometimes people have leg pain.” He said it like, “It’s life mom, and sometimes it hurts.” I just said, “Yes, some do. But not forever.” Right now, this seems like forever. But it is not. Nico’s chemo protocol includes two medications called 6MP (everyday) and Methotrexate (once a week). The doses of these two medications are adjusted based on his monthly (sometimes biweekly) blood work counts. The adjustments are made based on only one component of his counts – the absolute neutrophil count (ANC). The goal of the maintenance phase of leukemia treatment is to suppress the bone marrow – decrease his counts and immune system enough to keep leukemic cells from proliferating. We do not, however, want his immune system overly suppressed because at that point even common bacteria can pose a life threatening risk. So at this point in treatment, the chemo is basically acting like a dimmer switch. The light (the immune system) is on, but we are keeping it on low with a combination of 6MP and Methotrexate. So our doctors (and his protocol) calls for Nico’s ANC to be kept in tight range of 500-1500. A “normal” ANC range for a child is 3,000-5,000.
I need to make two important points here. First, neutrophils are a type of white blood cell tasked with fighting bacterial infections. So a low ANC can be dangerous – bacteria that normally reside in places where you would expect it can quickly become infectious without neutrophils. During front line chemotherapy, Nico’s ANC was frequently zero (literally). If you blast someone with an ANC of zero with chemo, you may very likely kill that person. So between chemo blasts, our oncologist would give Nico’s ANC time to recover by putting us on a “chemo hold.” These holds ranged from 2-3 weeks usually, and they were virtually the only times during front line that Nico’s ANC was over 500. As soon as Nico was 750, we “safely” blasted him back to 0. Now you understand why we were not very social during that first year. Second, Nico’s cancer was not in his neutrophils. His cancer was in his lymphocytes, a different white blood cell. The ANC is used as a guide to measure overall suppression, but it does not indicate whether the specific cell-type that we are targeting is being hit. I communicate with a lot of other parents with kids in treatment (thanks Internet), and how willing oncologists are to let a kid’s ANC wander above the 1500 varies a lot. Our doctor is very conservative about this issue. He reminds Jeff and me that tight suppression, under 1500, is proven to have better long term outcomes. At first, I just kept this in the back of my mind because Nico was really low, too low even, through much of treatment. But the last two months, Nico’s ANC has been high. Our oncologist increased Nico’s dose of 6MP in September, but last month Nico’s ANC still had not budged. He is actually close to normal range at 2,900, and this is obviously not what we want. The odd thing about his counts is his ANC is the only component that is not suppressed. Looking at all his other numbers, Nico looks like his marrow is right smack in the desired range. The only number that is too high is also the only number used to determine dosage! Our doctor explained this by reminding me that our bodies are biological systems, and for whatever reason, Nico’s neutrophils can take a licking and keep on ticking. He also said that it can take several weeks for counts to reflect a recent dose adjustment. So we are waiting to see Nico’s numbers next month before changing anything. I hope his ANC comes down. Jeff and I do not want to increase the chemo dose along with all the nasty side effects. His doctor has also ordered a lab test to take a closer at how Nico is metabolizing 6MP. Wait-and-see. We hope everyone had a wonderful Thanksgiving. It has been over a month since I posted last, so I will include a photolog of Nico’s adventures over the last several weeks. Happy Thanksgiving! Just days before Nico was diagnosed with leukemia, I took him to get a haircut. Unbeknownst to me at the time, his platelets were critically low. So when the hairdresser nicked him ever so slightly with the clippers, his thin blood flowed, dripping down the side of his face. Nico was hysterical. The visibly shaken hairdresser feigned nonchalance, but she did not finish the haircut and refused to make eye contact with me. Days later, Nico received a blood transfusion and started chemotherapy. The first time we arrived to the outpatient oncology clinic, I remember a waifish, gaunt child passed me in the hall. A few long strands of hair remained on her otherwise shiny, baldhead. This child was clearly very sick, critically sick, and the waiting room was filled with children that looked just like her. I could not process that we belonged in this miserable place. My child did not look like these children . . . yet. Hair became symbolic to me then, and within a month I shaved Nico’s head. We would beat chemotherapy to the punch, and take all his hair before this poison could. Nico fought me, cried and my unskilled hands made his hair look even worse. In hindsight, it was selfish. I wanted to control something in my new impotent role as “cancer mom.” But I traumatized Nico and this became obvious later. In the beginning, well-meaning people assured me that, “hair is less important to boys” and “young children do not know any better.” This is not true. A few months after my hatchet job, Nico finally lost his peach fuzz and turned into a cue ball. It happened in a day or two, and the change was dramatic. Chemo bald looks very different from shaved bald. Nico assessed himself in the mirror, and declared he was now Caillou. Caillou is a favorite cartoon character of Nico’s and he is drawn without hair. Nico took this transformation to a new level, referring to and introducing himself as Caillou for many weeks. This seemed to have the effect Nico desired. Children in clinic generally seemed impressed, explaining they were big fans of his. Nico responded like the big man on campus, gracing the other children with his celebrity status, and appeared to feel pretty special. By the end of front line treatment, however, still less than 3-years old, Nico came to me crying and explained calmly that he did not want to be Caillou anymore. He said that he wanted to be Nico again. Hair grows back, and when Nico’s did, it became clear that hair was now symbolic for him too. Nico did not want anyone to touch his hair. It is normal for 3-year olds to resist washing and combing. This went further. The longer Nico’s hair grew, the more neurotic he became about it. He refused to swim, participate in “water days” at school, or even wear a bathing suit out of fear of getting his hair wet. After baths, he would cry into a mirror while waiting for it to dry. Jeff and I thought we would never want to cut his hair after it finally grew back, but the daily battles and tears over his hair changed our minds. We had a family reunion in September, and I knew there would be a lot of swimming. I realized my role in this neurosis, and spent an insane amount of time trying to desensitize him. We stood outside of a barbershop and watched people get haircuts. I allowed (even encouraged) Nico to trim his stuffed animals. I let him trim my own hair. He eventually let me, and only me, cut the long strands off the back. This was only so he could swim at the reunion and still resulted in a lot of tears. Once he was finally willing to get into a pool, I decided I was done talking or thinking about hair. So done. Then a couple of weeks ago, we were walking out of a restaurant when Nico noticed a hair salon next door. Nico peered in, and announced that he was ready to cut his hair. We nervously entered the salon, Jeff and I hoping that someone, anyone was available to cut his hair. Nico was shy at first, but luckily the available stylist, Chris, knew exactly how to engage him. Chris allowed Nico to use his Transformers towel from swim class rather than a cape, which looked too much like a surgical gown. Her eyes told Jeff and me to step away, and we did. Chris snipped and clipped, and appeared extremely interested in Nico’s detailed and very long explanation of volcanoes. Nico had no interest in Jeff or me being there for this moment, but just chattered endlessly with Chris the entire time. It seems silly to characterize Jeff and me as proud over a haircut, but truthfully we were beaming and giddy. Happily, hair is just hair again. The haircut meant, "Mom, I will move forward when I am ready. I will move forward in spite of cancer, chemo and in spite of the mistakes you make along the way. I am OK." And so, we all move forward. P.S. There are more pictures of the haircut directly following this post. Nico had a lumbar puncture (LP) on Tuesday and by our standards it went fantastic. If you have read previous posts, you know that we were starting to feel like combat veterans from our experiences in the OR. After the last OR trauma, I asked our doctor if we could try the LP in clinic again. It never felt like we had given sedation in the clinic, versus anesthesia in the OR, a real chance. The only time we tried an LP in clinic, Nico received more than one type of sedation, and he is known for reacting paradoxically when he gets more than one of anything. Jeff took the day off of work to be there. We were not anticipating this would go well at all. I went over the scenario from our first LP at this hospital over and over in my mind. Would I have to decide whether to restrain my conscious 4-year old while someone inserts a large bore needle into his spine, or go back to the OR where a calamity of serious (potentially damaging) problems have occurred? Nico was given an oral medication that is not intended to make him sleep (just woozy). After about 20 minutes, Nico acted very drunk. He kept raising his eyebrows, babbled something incoherent and then belly laughed. At one point he lifted his hips off the table and roared with laughter. We realized he was peeing on the exam table, and he found it hilarious. At that point, just as he merrily lay into a puddle of his own urine, the practitioner arrived to perform the LP. It seemed so critical to time this at exactly the right moment, and the moment seemed right. So Jeff and I sprang to the head of Nico’s bed, threw a blanket over him and his urine-soaked sheets, and started to point out to Nico this completely bizarre contraption in the corner of the room. This machine looked like something out of the 1970s film Sleeper. It had speakers on the top, nylon threads protruding from the side, and the center was a giant clear tube filled with liquid that constantly erupted bubbles and plastic balls out of the top while changing colors. Nico was intrigued. There was a “it hurts” moment, but no tears were shed, and the whole thing was over less than 15 minutes later. The practitioner seemed just as surprised as we were. He had commented, “Well, maybe he’ll surprise us” before he started. After the procedure was complete, nurses showed up in our treatment room and congratulated us. Our doctor stood in the doorway giving us thumbs-up. Jeff and I were elated. We changed Nico’s clothes while he continued to trip out on the pediatric version of Pink Floyd’s The Wall. About a half an hour later, Nico had the munchies, snacked, and we were on our way out the door by lunchtime. This is unheard of and has never happened for any appointment we have ever had at this hospital. We stopped by the cafeteria to pick up soup and roll (what he eats every time we are there), and as we rolled out he vomited all over himself. Immediately after soaking the second set of clothes in vomit, he casually looked up at me and said: “I still want that dinner roll.” I kid you not, he was even hiccuping. We left the hospital with a bag of clothes saturated in urine and vomit and a little boy wobbling out the door wearing only a pair of underwear and his tennis shoes. I will take a toddler frat party over the alternative any day. Jeff and I felt like we should be handing out cigars and patting everyone on the back. It finally went OK. |
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