We are home again. That was the fourth hospitalization in three months. The next two phases of therapy are supposed to be more “intense,” so I can only imagine how many more times Nico will be hospitalized. Who knows? Maybe our hurdles are frontloaded and all these glitches will make the next part seem easy? We can hope.
Once we got home, Jeff and I just crashed. This ordeal was surreal and there are parts of it that I cannot remember clearly and it has not even been twenty-four hours.
There is a contentious story behind yesterday’s visit because both Jeff and I were adamant that Nico not get PEG (a type of chemo) and blood products on the same day again. Since Nico is completely covered in large bruises and his lab work is trending down (based on the past few weeks), we requested that his labs be drawn Wednesday (the day before our clinic day) hoping that if he required blood he could get the blood then. Unfortunately, our oncologist is out of town and the oncologist covering for him determined that Nico did not need blood. She determined this without examining Nico, talking to us about why we were willing to waste two hours of our day sitting around the clinic waiting for lab results that should have come back in less than 20 minutes, our previous experience with PEG, and in spite of the fact that his labs were in fact much worse than they were the last time he received blood.
I will spare you the details of the Wednesday visit, but suffice it to say that I was loaded for bear when we got to our appointment on Thursday. Our regular nurse was ready for this (since I had called repeatedly on Wednesday) and immediately assured me that Nico did not need blood. She explained that Nico had gotten blood in the past (when his labs were actually better) because each doctor in the clinic has a different standard for when to transfuse blood! I reminded her that Nico was symptomatic though (bruised up and can no longer walk the length of our block without tiring and begging to be carried). She countered that by stating that Nico could get another blood draw (requiring another needle stick) later in the week to see how his blood looked then. This was clearly not a good alternative as far as I was concerned. It completely defeated the reason we came to clinic on Wednesday. For obvious reasons, we want to minimize the times Nico is stuck, our time in the filthy hospital, and reduce the potential infection exposure of his port. The nurse then assured us that the chemo that Nico was getting this week would not drop his counts and that he would probably rebound on his own. Pretty much the only thing that we were all in agreement on was that Nico should not get blood that day because there was no way Jeff and I were going to risk another anaphylactic reaction after getting blood and again not know whether PEG was really the culprit. PEG is known as being a very dangerous drug to begin with and both Jeff and I were very anxious about it.
So another nurse started the PEG, and this is a nurse that I like very much, but she ran to the bathroom after hanging it. I did not realize that she had left the unit. Within a minute and a half of starting the PEG, Nico started to act strange. He was just quiet. I asked him if he was all right and he let out a little cough. I turned him around to look at his face and he whimpered “mommy, mommy, mommy” just like the last time he had anaphylaxis. So I started calling the nurse, but she could not hear me because she was in the bathroom. I remember calling a few times and I think I asked a parent to get a nurse for me. Or maybe I just yelled that I needed help? I could not get up because Nico was on my lap and connected to an IV pole. I do not even know for sure how I got help, but suddenly we were descended upon by a herd of people. In those minutes (literally less than three minutes) Nico completely transformed. His lips blew up, his eyes swelled shut, his ears turned red and swelled and his whole body was covered with a fine rash. Nico was screaming, cold and sweating. I remember that they could not get a blood pressure on him, but he was conscious in that he was at least screaming. He seemed to try and form words, but his speech was garbled. A few nurses asked me if I was ok. I do not know if I responded. But I remember in the middle of all of this hearing code bells ringing and “code blue” being repeated over the hospital PA system and thinking that it was bad timing for the staff because surely some of our team would need to respond to the other patient. It was not until the doctor that we had never seen before was seeing us in the ICU that I realized that Nico was the code! (As a side note, I have to say that the ICU makes the oncology unit seem like The Four Seasons. I have a new appreciation for vinyl couches and in-room bathrooms.)
Nico’s airway was never compromised. He responded very well to all the drugs they gave him in that the effects of that nasty PEG were reversed. The staff did a terrific job during the code. Jeff arrived on the whole scene right in the middle of the commotion and it was then that I started to cry. Not because I did not know that Nico would be ok, because I did know that they would be able to reverse the anaphylaxis, but because it means that Nico’s treatment will be that much harder. As I wrote previously, he will receive six shots in the thigh for every one dose of IV PEG that he misses. It just makes me sad that he has to go through that.
Because of the reaction to PEG, Nico has to be on steroids again. The steroids make him absolutely crazy. He is like a wild animal. During one rage, he bit through two tee shirts and a sweater and I have the marks to prove it. He only has to take the drugs for another two days, so I got him a chew toy and now “redirect” him (thank you Montessori) when he is unable to control his impulse to take a chunk out of Jeff or me. Nico is ok and that is the most important thing. We are grateful to be home. At this moment Nico is dancing to the Hot Dog song and other than all the bruising and baldhead seems perfectly fine.
I cannot help but worry about how all of these experiences are affecting him. But what I have to accept is that there is no other choice. This is the treatment and without treatment, Nico’s body would not restore itself. We must keep our eyes on the long-term goal and stay positive. Nico has a highly curable form of cancer and I need to focus on that and be grateful for it. I also have to hope that these trials will build his character, make him a more compassionate human being, and give him some understanding about life that many of us lack. He will not remember much of this, but I believe these experiences will stay with him, shape him, and remain part of who he is. So we, as parents, have a responsibility to direct these experiences in a character building (versus martyrdom) direction. We take our cues from other parents who also have warrior children in this fight and who are much wiser than either Jeff or me. The Suns and Hoslers are inspirational to us as we watch them navigate the waters in which we are all currently enveloped.
So we muddle through. We hope that things will go better than expected and that we can continue to jump these hurdles with as little disruption to Nico as possible. I will say if you have to be admitted into the ICU, a 24-hour observation visit is the way to go. Also, every time we visit the clinic and especially the ICU, we are reminded that many, many people have it worse. Much worse. I found a quote the other day that has become my new mantra:
I get up.
I fall down.
I keep dancing.