“Peace is the result of retraining your mind to process life as it is, rather than as you think it should be.” Wayne W. Dyer I have never read any of Wayne’s books, and I do not plan to in the foreseeable future. I also do not know if “peace” is processing life “as it is”. But I am certain that I would be a lot less frustrated if I could do this. Try, try and try again? In particular, I find anesthesiologists, recovery room nurses and very busy pharmacies difficult to navigate. I am constantly watching, constantly catching errors, and I have to push back way too often. Generally I can push nicely, but my encounters with anesthesiologists are unpleasant for the most part. But then today, I read the opening quote on Facebook (of all places) and wondered why I thought this would get easier. And anyway, maybe it is easier? Nico likes school, gained two pounds last month, and he even grew a little taller. We also made it a whole month without going to clinic. There are a lot of things to be happy about. But the clinic visit yesterday was a little rough, I had pretty bad laryngitis, our basement flooded, and everything happened at the same time. So, yesterday my stress level hit overload for a minute. Today, I recognize that my child is being treated for leukemia, and it was never going to be an easy road. I think that because things have gradually improved in many ways, I have gotten lazy about focusing on positives. So here I go . . . I think Nico qualifies as officially potty-trained. Nico’s new teachers tell me that he is very happy at school, and he even naps some days. His hair is starting to look so cute. His blond waves are returning. We bought a house and we are closing on April 30th (fingers crossed). Nico’s character continues to develop and be revealed. When our basement flooded, I freaked out and Nico said, “It’s o.k. to cry mom. But not yell. I know you don’t like how it smells in here, but the house isn’t really bad.” The last clinic visit, we saw our primary oncologist and will be seeing a lot more of him thankfully. He rearranged our protocol schedule around both Nico’s school and the doctor’s assigned clinic days so that we see him more often. We are so grateful for that. He indulges all my weird questions! As far as Nico’s progress, he has tolerated the full dose of chemo for a month now. The regimen is titrated based on his neutrophil count (and a few other things). His neutrophil count is actually just a little high, and has been ever since we stopped the standard prophylactic antibiotic (he gets a different and much more expensive antibiotic now). The oncologist states that Nico’s trend is great. He predicts that Nico’s neutrophil count will eventually plateau exactly where it should on the current dose. But until we plateau, we have to go back every two weeks for a while. They keep tight reigns on us here, and I like that. They do not want his neutrophil count too high for too long. The other issue is that Nico still complains of pain in his knees intermittently. Actually, that is not true. Nico almost never complains, but periodically, at odd times in the cycle, he will become whiny, cranky, clingy, and beg to be carried. If directly asked, and only then, he will admit that his knees hurt. I have written before that some kids develop avascular necrosis (AVN) on this chemo protocol. It would cause knee pain, and it is very serious. But both our current and past oncologists feel this is extremely unlikely. It is rare for his age group and his presentation is not typical for AVN. The pain is intermittent rather than progressive. So for now we are just watching him and making sure it does not get worse. I was upset when I realized Nico had been in pain for two days without my knowledge. I gave Nico some pain medicine and called Jeff because we had both wondered aloud about his behavior the day earlier. As I was telling Jeff the revelation that Nico had been hurting for two days, I started to cry. Nico overheard and when I got off the phone said earnestly, “My knees don’t hurt anymore, mom. My knees are all better . . . Are you happy now?” It is so touching and heart-wrenching that my three-year old would deny his pain to comfort me. At this young age, he consistently shows true concern for other people. But in this specific situation, this is obviously not what we want at all. Nico and I had a long talk. I do not know what he understands now. It is such a hard balance – teaching compassion, selflessness with appropriate self-centeredness too. I do not want him to think of my feelings where his pain level is concerned, but I also do not want to hide my own feelings from him. I am doing the best that I can, and hoping that Nico can overcome my imperfect parenting. And so far, he is doing just fine. Nico started school today! He has three favorite shirts, they are all yellow, and he never voluntarily wears anything else. Today when I told him it was time to pick his clothes for school, he went into his room and reappeared in the class shirt from Montessori Community School in Salt Lake City. The year that the school made these shirts was the year that Nico was diagnosed. So the design, “Toddler Galaxy” with a sun, moon and stars (the name of each of the three classes) was done on the leukemia awareness color of orange as a nod to Nico. It was really touching to me that he picked this shirt. But he has never let me forget that he misses his school life at MCS and talks about his guides and friends there everyday. The day went well from what I understand. His guides told me that a younger friend lost his shoe and Nico stopped to reassure the boy that he would help him. I always hope that the trials of treatment will result in increasing his capacity for compassion and kindness. So these stories are important to me. Our experience at clinic is still . . . let’s say variable. I am frustrated. Sometimes I think it is a good idea to document the difficulty and aggravation inherent in our current healthcare system, but not today. The last clinic visit was miserable, but I sent a short email touching on just a few of the issues, and almost immediately got a phone call from our primary attending oncologist. We were on the phone a long time. We had not seen our primary other than passing in the hallway, so he was unaware of what transpired. He was so eager and sincere to make things right. I do not know that he can fix everything, but I genuinely believe he will try. I wonder how you fix problems that run across so many departments? I have to focus on getting my son through this process, but I would really love to know that we helped to improved things for the next kid. Maryland is a really friendly state! We get the best customer service here and people are generally really friendly. Recently, we made Nico’s dreams come true and took him to Monster Truck Jam. I am attaching a picture from it. I was scratching my head as to how Jeff and I created a child obsessed with trucks until I saw Jeff’s face in these pictures. We tried weekly for a month to complete Nico’s scheduled lumbar puncture (LP). This is important because they are monitoring his cerebrospinal fluid for leukemia cells and injecting chemo into that fluid to obliterate any cells that could be hiding in there. Because Nico did not respond as expected to oral Versed during the last LP, we had to go to the OR this time. This means that every LP requires we go through a separate registration, which is not a short process. It means that Nico goes to pre-OP holding, which is sort of a scary place. It means that I wait in a waiting room filled with anxious, tearful parents with children having major surgery, which is one of the last places I want to be. It also means that we interface with a whole new group of physicians and nurses that thus far do not seem to listen very well. The whole process adds about two-three hours to the procedure. We talked to some of our friends whose son was diagnosed just a few weeks before Nico, and their hospital performs LPs in the OR too. This is why changing care midstream is hard. You become accustomed to how your own clinic runs. Now we must adjust to all new protocols during a time when our ability to adjust is pretty low. We are living in a temp house, all of our things are in storage, we are trying to establish a new life (school, work) and make sure our child gets the best care possible. And his care is fairly complex. I guess that I am just saying change is hard. And this change requires we spend hours and hours a week in the hospital. Nico is very sensitive to drugs, and frequently reacts the opposite of what is expected. In the past, he had terrible reactions to anesthesia. It is a lot like when he gets IV Benadryl. He screams with rage, clenches his jaw, pounds his fists, sobs, bites, hits, and flails his body. This lasts about an hour. It is very hard to pinpoint what is actually causing this. When he got Versed and Fentanyl it happened. When he got Propofol and Versed it happen. When he got Propofol alone it happened one time, but not another. We found the perfect cocktail for him after many trials and errors. He does wonderfully with Ketamine and Versed. He never loses consciousness completely and recovers in just a few minutes. Also, because this cocktail works so well for him, we were able to perform previous LPs in a little anteroom in our previous clinic with all the nurses that we already knew, in a kid-friendly room and in our street clothes. We would get a lab draw at 8 a.m., get an LP, then receive chemo, and still be home by lunch. So Nico and I wander down to the OR, and immediately Nico starts to get clingy. Then we are taken back to pre-Op holding, which looks like pre-Op holding, and Nico starts to cry. Everyone is in surgical garb – hats, gowns and masks. There is nothing kid friendly about it unless you think a cold metal crib is comforting. Nico has not seen anything like this since he had actual surgery. The anesthesia fellow comes in and I explain our history with anesthesia, including the reaction to Propofol and Versed. She tells me that they don’t usually use Ketamine and that they have had great success with Propofol alone. I told her that I could not say what component caused the problem in the past, but that I knew what worked and it is Ketamine and Versed. I probably should have pushed harder on this, but I was very worried about insisting they use an anesthetic that they appeared to be uncomfortable using. You are increasing your risk of a medical error when you push a practitioner out of their comfort zone. So I become very anxious by this point. Then I am told I need to change into surgical garb to take Nico into the OR room, but I am not allowed to stay in the OR room. When I start to don the gown, Nico loses his mind. He is screaming and trying to pull the garb off. The actual anesthesiologist arrives to the room and I tried to reiterate what I have told the fellow. He tells me that he has already talked to the other doctor, and he clearly has no interest in hearing my opinion. He then tells a hysterical Nico that he is going to make his life easier and starts to inject medication into his port. While he is injecting the medication, he made a comment to the effect of giving Nico a glass of wine to help him relax. Keep in mind that I am alone and holding a frantic child during all of this. The anesthesiologist had already started to inject the medication when I asked what he was giving Nico. The answer was Versed. The fellow mentioned they were using Propofol only, and now this doctor has given Versed, thus a combination of Propofol and Versed – the exact combination that I asked them not to use. It became very chaotic then. Nico was now stoned on Versed, but still trying to rip off my clothes while leaning back so hard it was difficult to keep him from tumbling out of my arms. In between his mewing cries and grabbing at my clothes, he was giggling, but there was nothing funny about it. I was then squired off to a waiting room of completely frantic parents where I stress-ate the entire time. As expected, Nico’s wake-up did not go well. As soon as his eyes were open and the crying started, the PACU nurse told me that I could take Nico back to clinic upstairs. In the time it took me to load him and his stuff into my arms, he was awake enough to start fighting. He was fighting so hard that they asked a tech to carry our things for us. I had to use both arms and all my strength to keep him from flailing himself onto the ground. He was screaming at the top of his lungs. So they whisked us off to clinic, and you can imagine our reception there. We had been there just a couple of hours earlier, and Nico was his active, talkative, playful self then. Now he is totally distressed and inconsolable. He was screaming so loud, they put us in a special isolation room rather than the infusion area because he was upsetting the other patients. The nurse tech (whom we love) bent over backwards trying to distract him, make things better or just help me. But it is like he is in a trance when he is like this. All that you can do is hold him and wait it out. I would probably have been angrier, but the NP was incensed, and that made me feel better. I told her that we seemed to have a bad relationship with anesthesiologists, and that as a whole they did not want listen to what I say. She said that this would not happen again. I am not sure what she did, but I was told that we would never have that anesthesiologist again. I know that she called the anesthesia department, pharmacy and our oncology fellow. The fact that the anesthesiologist did not speak to me directly seemed to be a big no-no. The NP got an official diagnosis for what happens to Nico with anesthesia, “emergence delirium.” She charted this as an “allergy” to this particular med combination so that future anesthesiologists would not be able to pull out these drugs under Nico again. I begged her to find a way to get us back into clinic, and out of the OR, for LPs. I think my exact words were, “Please don’t make us go back there.” She discussed this with our oncology fellow and he has reservations about trying IV Versed in clinic based on how he reacted to oral Versed. I will bring this up with him when I see him in person. This was a lot more traumatic than it needed to be for Nico. It was unnecessary too. I speak up for my child, but I have gotten into trouble in the past by pushing for something that the practitioner was not experienced with. So pushing to use a very powerful anesthesia when the practitioner is telling me that they are uncomfortable seemed like a bad idea. However, there should have been another alternative than using the exact drug combination that I asked they avoid. It is very hard to advocate effectively when your practitioner acts before discussing it with you. I am glad that the clinic at least saw what emergence delirium looks on Nico like because I always feel like they think I am just saying he is fussy. They do not think I exaggerate anymore, I am sure of that. I expect that we will iron out all of these issues. I expect this will go smoother in the future. I have to credit the NP (and the clinic staff in general) for trying very hard to improve the process. The NP and I had a very long conversation about this. The clinic had a sedation suite like the one we had in the past, but lost it when the hospital was remodeled. The department chair is working to get the space back. Likewise, the clinic has been trying to get accredited to give Ketamine in clinic for a long time. They are aware of these issues, and were aware of them before I spoke up. I think that speaks well of them. The process of actually accomplishing these goals seems endless though. In the interim, they are working with me within the parameters that we can currently control, like what drugs anesthesia uses. Nico is probably going to have to adjust to the OR though. It sucks down there. But if they legally cannot give Ketamine in the clinic, there are not a lot of choices. We will just keep muddling through. PS - As of 02/09/14, we have stayed out of clinic for eleven days now. This is progress! 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. |
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