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.