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.
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.
RSS Feed