We started our third week in Baltimore by hitting 45 hours in clinic. The good news is we do not have to return for . . . six days. I do not know what happened to this notion of once a month, but that is not foreseeable yet. We had to go back to check Nico’s blood counts since we have been holding his chemo for three weeks. The first two weeks, I think Jeff and I were pretty calm, just annoyed with all the time I had to spend in the hospital. But by the third week, we both got nervous. Then Nico’s platelets dropped from 282 to 169 in just two days. A drop in platelets can be a dangerous sign that the leukemia has returned. Jeff and I quietly freaked out. I contemplated calling family so that we could freak out with company, but decided to spare everyone the extra stress until we got the next lab work done. I am happy to report that Nico’s blood is finally starting to rebound. Actually, he jumped from a neutrophil count of 6o, to a count of over 2,500 in just six days. The bone marrow is a crazy thing. One parent described the neutrophil count as part voodoo magic and part witchcraft. I agree.

So we have restarted the chemo, but at only 50%. We have also taken a semi-permanent hiatus from the prophylactic antibiotic that he was on to prevent PCP pneumonia. He will get an alternative antibiotic IV once a month (hooray, more time in the clinic!). Oh well, I guess I am resigned now.

When I realized Nico’s platelets fell, I immediately emailed the fellow and our attending oncologist. We were only going to clinic that day to double check blood work, and were not scheduled to see our attending. But after getting my email, he came to clinic (on a day that he is not there at all). You would never know this doctor is a Who’s Who. He is so humble and compassionate. He never seems in a hurry and has already spent a lot of time reassuring me. Probably the most reassuring thing that he said was that our start of maintenance has been really bad. I am so glad that this is not typical because it gives me hope that it will improve.

So for now, we are exhaling and excited for cold and flu season to pass.

Things remain pretty weird. Nico and I clocked over 37.5 clinic hours in two and half weeks. We have never been in a hospital this much, at any point during treatment, except when actually staying overnight. The most frustrating part is that Nico never got all of the chemo for this cycle, which was part of the reason we were there so much.

Nico and I went to clinic yesterday to attempt the lumbar puncture originally scheduled two weeks ago, and to get IVIG (the antibody I mentioned previously). IVIG is technically a blood product and Nico has had many severe allergic reactions to blood, so I was a little nervous. They decided to pre-medicate him with Benadryl and Tylenol to stave off a reaction. Nico and IV Benadryl just do not mix well. I warned everyone that the Benadryl had to be given very slowly, and they did give it fairly slow. Unfortunately, he still became agitated and a little scary. He bit, kicked and threw things. He urinated everywhere and then attempted to pull out his IV if anyone approached him to change his pants. Then after about 45 minutes of this, he just passed out. He was more unconscious than asleep. He was so totally unresponsive, the physician’s assistant (PA) thought that he might actually be able to perform the lumbar puncture without using Versed. The PA even managed to inject Lidocaine into the area, and this is usually uncomfortable, without anything but Benadryl onboard. But near the end of the Lidocaine injection, Nico squirmed and the PA (and I) thought it would be smart to go ahead and give Nico Versed just to be safe.

About 20 minutes after giving Versed, a drug used for sedation all the time, Nico rolled over, opened his eyes and sat right up. He was completely drugged out and his speech was garbled, but he was awake. Versed woke him up! The PA and I just looked at each other and shook our heads. It was crazy. The PA still attempted to get an LP, but Nico’s face indicated this was going to be too traumatic. The PA stopped and said, “I can get it, but he’s going to remember it” and then left it up to me whether to proceed. I did not see the point. The LP has been delayed for two weeks anyway, and I do not think my kid needs anymore trauma. We called the whole thing off and waited for the IVIG to finish.

This hospital performs a lot of blood work. They run a completely new set of labs every time we are there, and that is a few times a week right now. Hopefully he does not become anemic (I’m not kidding). So we found out yesterday that Nico’s neutrophils dropped again, before we even restarted his chemo from the last drop. This means Nico’s ability to fight bacterial infections is nada, and any fever will require immediate hospitalization. The last fever that landed us in ER was probably some random virus that crashed his counts. So more waiting and more chemo holds. In the last three months, Nico has not even gotten 50% of the prescribed chemo because his counts are so low. At this point, once we can safely restart his chemo, we are going to have to reduce his dose. They also want to test him for sensitivities to the chemo. The PA was saying that each person metabolizes these drugs very differently. Nico clearly does not metabolize pretty much anything like the norm. They are also going to look at changing the prophylactic antibiotic to something else since the one he takes now can lower counts.

We left for the hospital that day at 9:00 a.m. and got home around 7:00 p.m. It is hard to imagine how this is going to work for us. The doctor and PA assure me, over and over, that it will get easier and we are ironing out the wrinkles. I really hope so. The crazy part was that the reason that Nico’s doctor delayed the LP to begin with was because his neutrophils were too low. So we waited, his neutrophils got even lower. They are effectively 0 right now, and they were still going to do the LP (if the Versed had worked). So what was the point of all these delays and clinic visits then?

On a positive note, he did not have an allergic reaction to the IVIG and this should help him be able to fight off viruses a lot better. We will start monitoring his IgG levels monthly now and he will get infusions as he needs them. The PA said that he has seen a lot of kids really turn around after starting these infusions. So maybe this will be what we need. On another positive note, we have been in clinic so much that we have gotten close to the staff. Actually, I know more about their private lives than I ever thought I would. But they try very hard to make it easier for us. For example, the nurse tech got me a meal card so that I could get lunch. She also spent a long time picking out a cute outfit for Nico to change into since he urinated all over his clothes. The staff took turns sitting with my sleeping child so I could get something to eat. When not psychotic from Benadryl, Nico likes to roll around the hall on a little fire truck that he found in the playroom. He blares the siren the entire time, and the staff will line up to let Nico roll by why exclaiming that fireman Nico is coming to save the day. This is a really friendly group, not just the staff but the patients too. Still, I would like to see a lot less of them, at least less of them in that setting. Maybe soon.  

P.S. The photo of Nico eating was right after the Versed should have kicked-in. Instead of making him sleepy, it gave him the munchies. The little video clip below this post (on warriornico.com) is about when the Benadryl started to take effect.

I think I might have had some kind of emotional breakdown finally. Not that I have not been emotional on and off throughout treatment, heaven knows that I have, but I felt the most out of control today than I have in a long time. I completely underestimated how difficult it would be to change providers during treatment.

Our first two weeks here were, as Nico likes to say, “stinky.” When we first met with our new attending oncologist and his fellow (doctor training in oncology specialization), we were very reassured. The oncologist said that he completely agreed with Nico’s initial diagnosis and treatment plan. He said that Nico’s course of treatment would have been the same if I had started with him, and he felt that Nico has done very well. He also said that the most important factor in Nico’s case is his cytogenetics (see the 01/11/13 post if this does not make sense and you really want to know). Like our previous oncologist, our new doctor said that Nico was “just barely high-risk” and that with the extra chemotherapy he received during the intensive phase, Nico has an “excellent prognosis.” Nico really took a liking to our fellow. He is young, but clearly very bright and accommodating.

The reason the overall experience still stunk is because there were a lot of issues in the other departments. It is a long story, and I do not want this post to become a parade of horribles. But the biggest and most consistent problem is the lab. Getting Nico’s routine counts (blood work) used to involve parking in the circular driveway at the hospital 7 minutes away from our home, running just inside the hospital doors to a lab of familiar faces that would greet Nico by name. Yes, it was like the TV show Cheers except with needles. OK, maybe I idealized the familiar, but the blood was obtained via a finger stick (like checking blood sugar) and the whole process took about 15 minutes tops. I would call about 30-45 minutes later and the lab would give me the results. Then I would know if we were getting chemo the next day.

Our new hospital does none of the above. So labs require I drive 45-90 minutes to the oncology clinic, check-in, get Nico’s chemo port accessed (a trauma for Nico), and then we have to wait for results. The shortest turn around thus far has been 4.5 hours and the longest 6.5. And Nico frequently does not make counts (he is neutropenic a lot). So to sum it up, in the last two weeks, Nico and I have made five trips to the hospital and spent over 27 hours there and Nico has yet to get his full chemo regimen (still has not made counts). Keep in mind that we are in maintenance therapy only. Maintenance was supposed to mean that we went once a month for a few hours. It was supposed to mean that life would be more normal, at least most of the time.

Last night we had to go to the ER at 2:00 a.m. because of a fever. Between 5-6 a.m. the ER resident came in to tell me that he had to call the lab and push them because they still did not have our numbers. I just lost it. I really underestimated the stress involved with changing care during treatment. So much is done differently here and it is so incredibly time intensive. The idea of us living with any type of normalcy over the next three years was fading fast. And now Jeff is working almost an hour and a half away from the hospital, and I am doing this alone. That poor resident. I acted like a lunatic and even though I knew it at the time, I could not stop. I kept saying, “I know this is not your fault, but what is wrong with this place!” That would be followed by my next complaint.

The worst part of it was that Nico and I had an appointment that day in clinic at 9 a.m. for a special type of transfusion that is supposed to help with his ability to fight off infections. The infusion can cause serious allergic reactions, and because my boy is known to be super allergic, the infusion was supposed to take a good part of the day, and we had been up since 2 a.m.

I staggered to clinic at 9:15, carrying my weeping, feverish child still in his pajamas. I can only imagine what we looked like. Nico flipped out when they tried to take his blood pressure – think of a tantrum x 10,000. The woman taking his blood pressure decided that Nico needed some alone time, and a nurse walked us back to a private room. As soon as I was in the room, I just started to bawl. I have almost never done this in the hospital setting in front of personnel. I do not even remember what I blathered to the nurse.

A few minutes later a seasoned and confidant nurse practitioner walked in and immediately surmised that something was amiss. A few minutes after that our attending oncologist walked in and before I could speak said, “You have had an awful two weeks. And I am sorry.” Those words were magical! Then we just had a long, long talk and I got to oratorically mug him with all my fears and concerns. He was so validating. He promised me that it would get better. I am not sure that I have ever met a doctor with a better bedside manner. But more importantly, he explained Nico’s plan of care in a way that I both understood and felt I could trust him with my child’s health. Baby steps. Well, maybe a big giant step, but we still have to find away around the lab (and pharmacy, but that is another story).

We are adjusting and hope to be well adjusted soon. But it is not easy. During this long visit, my exhausted child watched old videos on my phone of the party his Aunt Casa threw at the beginning of treatment. The center of the videos contained a pink birthday cake painted in yellow and purple frosting. He requested that we make this again. We stopped on the way home and spent the late afternoon making a glorious boxed cake (there is such a thing). We will probably both pass out soon, but we managed to save the day. The picture on the post (and directly following it on warriornico.com) is Nico stirring cake batter after spending 12 hours in the hospital being kept awake with fevers, pokes, prods and a spent mother. Love this boy.

It seems to be an unofficial tradition, in this strange circle of which we are a part, to post something on the Crapiversary of diagnosis. Nico was diagnosed one year ago today, on January 2, 2013. Jeff had been laid-off just two weeks earlier, and we were scheduled to leave the next day for Bermuda where Jeff expected to receive a lucrative job offer. I took Nico to his pediatrician to check his ears before we put him on the long flight. Nico had been running fevers again, and I wanted to make sure it was safe to fly. I remember how upset Jeff and I were when the pediatrician referred us to an ENT for possible tubes. We all thought that Nico had chronic ear infections because of his continual fevers and enormous swollen lymph nodes. Just as we were leaving the pediatrician’s office, she asked, “Is he usually that pale?” That question resulted in the discovery that he had leukemia.

Occasionally I ask myself “what if?” What if we had gotten on that flight to Bermuda? When Nico’s bone marrow was aspirated on January 4th, it was 100% blast (cancer) cells. That same day, his blood work showed that 80% of the white blood cells were actually blast cells, up from 60% the day before. We were scheduled to be in Bermuda that day. Bermuda is a three-hour plane ride to the nearest children’s hospital or pediatric oncologist. What if the doctor had let us leave that day with just our prescription for numbing eardrops?

Sometimes I am asked what led up to his diagnosis. Nico was a fat baby, 95th percentile for weight. Our pediatricians in Virginia (where he was born) always said that it did not matter what the number was as long as he stayed on the same trajectory of the growth curve. Shortly after Nico turned one, he started to fall off of this trajectory. Around this time, we moved to Salt Lake City from Virginia and changed pediatricians. When I mentioned the change in his body to his new pediatrician, he replied that it was common for kids to thin out when they started to walk. I felt that the doctor was disengaged. Nico had fallen from 95th percentile to 15th in a matter of months. So I changed pediatricians. The second pediatrician said the same thing as the first, but I pushed and got a consult with a registered dietician. The dietician stated that Nico looked great, reviewed his food diary and had no concerns. My anxieties were relieved for a bit.

Shortly after Nico turned 18-months, I became concerned about his speech. He was not really trying to speak. Looking back, I just knew something was wrong. I called the state’s early intervention program and a case manager, pediatric nurse and social worker came to our home to evaluate Nico. They assured me that he was normal, but he did have a very slight speech delay. He qualified for speech therapy through the state program. More importantly though, was that the visiting nurse recommended a new pediatrician after I mentioned my dissatisfaction with our local pediatricians. The recommended doctor had a very busy schedule, but according to this nurse, it was worth the wait. It took six months to actually see our new doctor, but we were allowed to see her partners in the interim. I remember the first time she came into the exam room. She reviewed Nico’s previous medical records, started to say something and then stopped herself and asked, “Well first, do you have any concerns?” I said that his weight concerned me. She nodded knowingly and said it was a concern. Weight loss is a symptom of leukemia (among a million other things). Nico was around the age of two by this time. He had just started preschool and had been fighting an illness. The doctor suggested that his recent illness may have reduced his appetite, but we needed to return for a weight check. When we returned a month later, we did not see this pediatrician. We saw someone else who again thought that Nico looked great and was just a small child.

Then came the parade of illnesses. Once Nico started school, it was fever after fever after fever. I came to learn that an unexplained fever lasting more than five days is sometimes delved into via blood work. But every time we visited the pediatrician’s office, each doctor that saw us (usually a different doctor at each visit) would find a possible cause for the fever – always the ears. The one exception was when Nico tested positive for the flu. If he had not tested positive, the doctor on that visit had warned us that we would have to go to Primary Children’s for lab work. If he had not tested positive for the flu, we probably would have been diagnosed that day.

At one point, I received a friendly lecture from one of the treating practitioners (again, not our primary pediatrician) that fevers are normal in kids and that I did not need to worry about them if my son was acting otherwise normal. So I tried to relax. But why did every single cold result in a fever? Why did Nico end up on antibiotics literally two weeks out of every month for the last six? At one point, shortly before diagnosis, I remember saying to the doctor (again, not our primary pediatrician) that I was becoming very concerned that there was something wrong with Nico’s immune system. I also remember pointing out Nico’s swollen lymph nodes that were visible from across the room. That doctor reassured me that kids get sick their first year in school (true) and that after ear infections, lymph nodes sometimes form calcifications that cause them to stay enlarged.

I do not want it to seem like I am faulting these doctors. The fact is that childhood leukemia is rare. The odds that Nico had leukemia were very low. Meanwhile, Nico gets thinner, paler and sicklier. January 2nd, 2013, we are again at the pediatrician, but this time we see our primary doctor. We are about to leave when she decided to check his hemoglobin (red blood cells) because she notices that he is pale. A normal hemoglobin value for a child is 11-13. When the nurse calls into the exam room that Nico’s hemoglobin is 5, the doctor looks shocked. She says that she wasn’t expecting that, and wants us to go to Primary Children’s Hospital for more lab work. She reassures us that it could be an error. My mind starts racing. I cannot control my thoughts. I want to ask her, but I am afraid. Finally I cannot contain it anymore and I tell her that I realize that I sound crazy but will the tests that she ordered indicate whether he has leukemia or not. She tells me that the tests would show that.

I cried the entire time we are driving to hospital for the blood test. Outside the outpatient laboratory sits a young, bald girl. She is holding an IV pole that is pumping chemo into her sickly little body. Her parents are on either side, looking exhausted, weathered and old. I could not stop crying. Nico did very well with his first blood draw and when we leave the young girl has gone. I convince myself that I am working myself up for nothing. The wait begins. Someone from the office is supposed to call me with results. Hours and hours go by and no one calls. I called the very busy and large office and the receptionist knows Nico and me, and tells me that the doctor will call after she gets one more result back.

I am running errands, preparing for the trip that never happens, and I get a call from Jeff. He is crying and says that Nico’s blood work is suspicious for leukemia. We have to go back to Primary Children’s E.R., they are expecting us.

Again, I cry the whole way, but it is only “suspicious” and maybe it is not cancer. I realize that everyone knows exactly what it is when we arrive at the ER and as the triage nurse leads us to an exam room, another nurse yells “You can’t put an onc kid in that room!” The parade of doctors began and no one would tell us the diagnosis until finally an oncology fellow showed up in the ER (he stayed at the hospital long past quitting time in anticipation of our arrival). He told us plainly and kindly and we were incredibly grateful for his honesty and sincerity.

It is incredibly painful to remember that first sleepless night. The overwhelming thought was that I would put this baby through hell, torture him with needles, lumbar punctures and chemo for years and years, and in the end there would be no guarantee that he would make it. I did not see how I could live with the uncertainty and fear. It was unfathomable. I wanted out of this new world. It hurt to look at him knowing what he would endure. Every look at that face was a reminder of what I could lose. Everything hurt. But I was trapped in this hell. There was no way out and I had to be “strong” to support my little boy. There was choice in this. We all had to step forward and endure.

In the beginning, after the shock wears off a little, you try so hard to control the process. You ask why. You blame yourself. You wonder if you somehow caused it or could have prevented it. You question your doctor. You question the course of treatment. You become superstitious. You look into alternative therapy. You desperately search for some edge that you can give your child, some way to boost the percentages in his favor. You just want to control something in your completely out of control life. But you control nothing. At some point I accepted this. It does not mean that you do not still watch, question and advocate. But I have to at least try to live more like my son – in the moment – and accept that ultimately I cannot eliminate risk from his life.

The question that I asked about whether they would check my child for leukemia haunted me later. I wondered if I somehow knew and I worried that this knowing was a bad omen. I wondered if my fears were a foreshadowing. The pediatrician asked me about this later as well – why did I ask this? I discussed this with my own doctor. She reminded me that I am a nurse and my previous training included leukemia. I did not ask this out of thin air. In fact, I had been questioning for months whether something more serious was going on. And Nico had every classic symptom of acute leukemia. From what I was told upon admission at diagnosis though, Nico’s primary doctor caught his leukemia earlier than most do. I am positive that the previous physicians that we saw would not have caught it and we would have been in Bermuda when the leukemia completely took over. What if Nico had not had a speech delay?

2013 seemed like a million years. Everything in our lives has changed. But we have endured. And when I ask what if, I think we were actually pretty lucky in 2013! I do hope and long for the day when this day, January 2nd, comes and goes without any significance in our lives. One day . . .

Happy New Year.