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TEAM NICO

Our son, Nico, was diagnosed with HR pre-B ALL (acute lymphoblastic leukemia) on January 2, 2013. This is a record of Nico's progress.

WELLNESS WARRIORS

More Blood Sugar Issues & New Expectations

6/25/2014

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I know that I promised a non-medical update, but there is a lot going on medically right now. So I will keep my promise in a few days.

Last Monday we had another lumbar puncture (LP) with Methotrexate injected into Nico’s cerebrospinal fluid. On LP visits, Nico also receives Vincristine IV (through his implantable port), an antibiotic to prevent PCP pneumonia (he is at risk because of long-term immune system suppression), and we start a 5-day steroid pulse (a fairly large dose of Prednisone he takes twice a day for five days).

If you have read my blog, you know that we have had issues with LP days. So, I was very anxious on our way to clinic. We were scheduled first though, and we hoped that would avert Nico’s previous issues with dangerously low blood sugar (hypoglycemia).

We were wrong. But our previous experience helped us to mitigate the duration of hypoglycemia this time. We arrived at clinic by 8:00 a.m. (as they opened) and our primary nurse drew Nico’s blood by 8:15. Nico seemed completely normal at this point. Nico and I have a routine while at clinic. In between all the steps involved in his treatment, we hang out in the clinic’s toy room. But by around 8:30, Nico started to act strange. He did not want to play, was whining and wanted to be held. Then he said, “I need dinner. I need food. Mom, I need a drink. Get me food.” I told him that we had to wait just a little longer, and he burst into tears. It was not a normal cry. He could not stop crying. I picked him up, and I knew in my heart that his blood sugar was dropping. I also knew that any minute our nurse would be over to give us our OR paperwork. I intended to ask her to check his morning labs and tell her my concerns. But then Nico started to yawn. Based on previous experience, this is a big red flag. So I wandered back to the nurses’ station to look for our nurse. She was with another patient. It had only been a few minutes, literally, and even though I was close, I thought I had a minute or two before I completely freaked out. Then Nico asked to sit in his stroller. As soon as I set him down, he fell asleep. My child has never voluntarily fallen asleep. Ever. Freak out time. So I went back to the nurses’ station, and found another nurse. This nurse has helped us in the past, and from what I am told, she had leukemia as a child, too. So I told her, “My child is acting like he did when he was hypoglycemic.” She asked a few questions and was right on it. She told me to take him to the infusion area while she got the supplies to check his blood sugar. After seeing what they have to do just to check a blood sugar, I understood why there had been some hesitancy before. It was a bit ridiculous. It took several minutes, which seemed like years. The nurse told me his blood sugar was 39. This drop happened fast. He seemed completely normal at 8:15, and by 8:45 he was essentially unconscious.

I said, “Did you say 39?” She repeated, “39.” She quickly disappeared and I overheard her tell our primary nurse with some urgency in her voice. I started to cry. It was really scary. The clinic handled everything pretty well. Both the nurse that performed the check and our primary nurse kept me apprised. They started a dextrose solution right away. The nurse practitioner that we had words with a few weeks ago came by to reassure me that Nico was getting what he needed. Another nurse that we have only really met once came by to tell me that one of his patients has this same issue and she is fine now. An oncology fellow also came by at our oncologist’s request since he was not in the clinic yet. The fellow asked if Nico usually wakes up in the night to request food or drink. It is funny that she asked. Nico wakes up like clockwork almost every morning between 4 and 5 and asks for chocolate milk. In the past, we indulged this request specifically for this concern. But on this day, because he was getting anesthesia, we had to tell him no. We offered apple juice because he can have clear liquids in the early morning, but Nico was incredulous that we were denying him milk and refused to drink it.

So we missed our LP time slot because he was not stable. So much for changing weeks specifically to avoid hypoglycemia – we ended up in the last spot anyway. Once Nico woke up, was acting normal and his blood sugar was up to 90 (after about 45 minutes), we headed to the OR to get the LP done as quickly as humanly possible. It was probably our best experience in OR. Since I could report, “His blood sugar was 39 at 8:30,” the anesthesiologists seemed to pay more attention. Everyone reviewed his labs. Plus, we had a new anesthesiologist this week, and she seemed to listen to me. When Nico woke up from the anesthesia, he had an open lunchbox with food that his dad had prepared for him that morning. He was so excited that his dad had made him lunch. He ate like a maniac and seemed himself for the rest of the day. I calmed down a little bit, but we still had several hours left in the clinic.

Our oncologist came over to speak to us. I do not think he had any patients in clinic that day, but he came over just to see us. The oncologist said some reassuring and saddening things. The reassuring part is that he told me that he was not minimizing my feelings, but that the hypoglycemia was a manageable problem. He said that Nico will have to have some type of clear liquids before he comes to clinic. He said he did not care if we just gave him – a lollipop, a Popsicle, juice, 7up – but he had to have something. Also, there is now a standing order that the minute we come to clinic, Nico gets dextrose through his port whenever he is fasting. Our doctor said this is nothing more than a sensitive child reacting to prolonged fasting. I felt better after he said that.

The saddening part had to do with Nico starting soccer last week. He was not into it. The coach was not engaging, and Nico seemed bored. Jeff and I have been concerned about Nico’s physical abilities in general, and saw the soccer camp as a sort of physical therapy. So Nico’s unwillingness to participate bothered us. Nico stumbles and falls a lot, and one night this resulted in a big gash on his forehead. He also does not seem able to do gross motor tasks with his legs that other kids his age (or even younger) can do easily. The one that pops out is climbing ladders – this seems very difficult. Even ascending and descending stairs seems like a struggle at times. So after the blood sugar issues were put to rest (for now), I asked our oncologist about the concerns we have about his physical development. A few kids that we know in Nico’s boat get physical therapy, and we have thought it might be a good idea. The oncologist’s response was both helpful and heartbreaking, but still left us with hope. He stopped me as I was talking and said:

        Let me make this totally clear. There is no way that Nico has not been physically compromised by the chemo.                         Vincristine causes severe neuropathy. If we sent him to see a neurologist today, nerve conduction tests on his lower                 extremities would be completely abnormal. Likewise, the steroids cause a loss of large proximal muscle control. We do         not expect that Nico can perform physically like other children his age. We all act like maintenance therapy is no big             deal, his hair grew back and no one can tell that his is sick. But the reality is that we are poisoning him, and these                     poisons are no joke. So take him to soccer, and let him feel like he is part of that. But do not expect him to participate at         the level of the other kids and do not push him. He will do what he can. He will push himself 110% because of who he is.         So if he is not pushing, he cannot do anymore. Let him sit out when he wants to. He has chronic pain. He has chronic             weakness. He does not have control over his large muscle groups. We expect that eventually there will be regeneration,         and he will catch up, but that will not happen until he is off treatment.

It is hard to hear. It makes us very sad. But I am glad that someone finally said it straight up. When you first get the diagnosis, most of the doctors want to reassure you that life will return to normal. The maintenance phase of the chemotherapy course is painted as so much easier than frontline and recovery is the focus. And of course our doctors and nurses want to lessen the blow. But the truth is that maintenance has not been any walk in the park, and our expectations for these three years have been set way too high. So I guess we readjust our expectations, and again try to focus on making Nico’s life as good as it can be for right now while understanding that life is not as easy for him as we had hoped.

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Just an Update: It Still Stinks

6/18/2014

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I think I need to update since I left things hanging in my last post. I also wanted to post some positive stories as well, so I will post again in a day or two with some non-medical stuff.

Based on the comments on this blog from my dear friends, I bought a glucometer through Amazon. I had no idea that glucometers were available without a prescription, or that they are so cheap. The good news is that Nico’s blood glucose has been normal. Also, the additional lab work ordered by our oncologist to test adrenal sufficiency (a.m. cortisol) was normal as well. So at this point the oncologist believes that the hypoglycemia was a one-time occurrence that resulted because of the lengthy fasting period. Our oncologist ordered that Nico always get the first available time slot (9:30 a.m.) for lumbar punctures (LPs) to avoid hypoglycemia in the future.

This first-available time slot order became an issue of its own. As I have written numerous times, we have had a lot of problems on LP days. In the beginning, there was one particularly bad day that I do not believe I wrote about in detail. Again, because I am hesitant to write too much when we are still in treatment. But the long and the short of it is that I developed trust issues with the person performing the LP that day. After the LP on that particular day, Nico would not wake up. I could arouse him, but he would fall right back to sleep. He was completely gorked for about 8 hours, and I believed that he was overmedicated. But no one talked to me about the procedure, and there were a lot of other things going on. After LPs, a bandage is placed over the puncture site, and it is to stay in place for 24 hours. So 24 hours later, I removed the bandage to find two puncture marks in Nico’s back instead of one.

Presumably, Nico woke up, or jerked, or struggled during the first attempted to perform the LP, and thus the anesthesiologist gave him another dose of the medication that we were using then. This resulted in Nico receiving almost twice the dose that he normally received at our previous clinic and explained why he slept all day. Both Jeff and I understand that kids get wily during LPs and can end up getting two sticks. But what bothered me was that no one felt any obligation to inform me of what happened. Instead they handed off an overly-sedated child and let me discover two holes in his back the next day.

Like all the prior stories, I notified the oncologist. Our oncologist looked up the procedure record and that was how I found out about the second dose of anesthesia. Our oncologist juggled some dates for us, and permanently changed the day of the week that Nico was scheduled for LPs. This way, we avoided the practitioner that performed the LP without much ado.

Fast forward to last week (on my birthday no less) and I get a call from the practitioner in question. We still see her often; she just does not perform his LPs anymore. I believe that she was also the person charged with reviewing the labs prior to LPs (you know, the one that did not catch the hypoglycemia). She informed me that there was another child that needed Nico’s time slot, and she had unilaterally changed our LP day back to the original (on the day that she performs them). When there are scheduling changes, I automatically get an email from the clinic. The email showed the date change and also showed that scheduled time was again at the latest possible time slot. I started to argue with her. She insisted that I should not believe my eyes, and trust that she had scheduled his OR time for 9:30 (the first slot). This set me off because she and I have a history with her orders “not making” into the system and/or “randomly” disappearing. In fact, I believe that she is incompetent, but it has been difficult to prove.

Things got heated, and I suggested that Jeff would call to deal with her because I felt like I was banging my head against a wall. She welcomed this as she clearly viewed me as totally unreasonable. In fact, she told me that I was trying to deny another child life-saving medical care because of my unwillingness to accommodate other patients. You can imagine how that was received. So Jeff called, and made me seem calm and collected. Shortly after, Jeff also called our oncologist.

Our oncologist called me immediately. By the time the oncologist called, I had already called another pediatric oncology department at a neighboring hospital to schedule a consult. The oncologist and I spoke for what seemed the millionth time over what seems to be the same issue over and over. I imagine that it is incredibly frustrating to be at his level and spend what seems like a lot of time putting out fires created by what is supposed to be support staff.

The oncologist changed our LP day back to the day that we wanted, but we had to jump a week to do this. The oncologist also pulled this particular practitioner off of Nico’s care altogether. We were supposed to get an LP this last Monday, but it has been bumped to this Monday.

We are just tired. The irony of this situation and my background is not lost on me. I worked in nursing for many years, then law school because of an interest in healthcare policy and litigation, and then ultimately I moved to DC to follow my dream of working in patient safety. I was going to help change the world for the better! In some ways, my whole professional career has led me to advocate for my own child. The terrible part is that it is my own child, that advocacy is hard-fought, and that I am not only not getting paid, but instead we are paying a mint for this constant strife. At least we are not alone in this struggle. We seem to have a lot of support, even within the very system that we seem to be fighting.

To be continued . . .


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