"One could say that fear is always based on something that has not happened yet, and is therefore a fantasy of our mind rather than fact"

Nico made counts. He has had a really strange cough for a few days though, so he will have to be examined tomorrow and then they will decide if it is safe to sedate him for the lumbar puncture (spinal tap) and chemo. If he can start, this will be our final four weeks of frontline. I think our doctor will let us press on, but I do not want to count our chickens just yet.

I know we have complained a lot about the delays, which are actually a normal part of this. But we had certain dates in our minds for a long time – it was a mistake to reinforce that Nico would start school on the first day or celebrate his birthday without chemo. So after spending a few days pouting, we realized that we could easily take advantage of the fact that Nico does not know when his actual birthday is. Thus, Nico’s birthday has changed for 2013, and he is now a Scorpio for a while. We hope to have a great birthday/end-of-frontline/thank-you-for-all-your-support party then, but we will have to wait to see how he handles these next four weeks before we pick a date.

My mom retired early and came up to help us take care of Nico for a few weeks. It has been a tremendous load off of me. But mostly it is a lot less lonely, and I am so grateful for her.

So, here we go. I am happy to put this behind us, but afraid of leaving the reassurance provided by heaps of chemo. There is a strange comfort that the beast is actively being beaten back, kept at bay and permanently destroyed. Now we have to hope that less chemo will maintain him. Hope can be scary. Both Jeff and I deal with the fear differently. Jeff wants to stay positive and not spend any energy pondering an unwanted outcome. I understand that 100%. But I feel like I have to face down my fear. I want to know everything about the enemy, and know that if the beast were to rear its ugly head, we could jump that hurdle. I have to learn not to fear it, and this requires I face it. This mentality comes from my nursing history. Throughout nursing school, I told everyone that I never, ever, under any circumstances would work in pediatrics. When I became a float pool nurse, I used to make one request: do not send me to the oncology floor (the only mixed adult/pediatric unit) because I could not stand “seeing those bald kids pushing their IV poles of chemo around.” When I was offered/told to get my chemo certification (I never before turned down free training), I “forgot” to schedule it. I avoided and feared the exact scenario that has been thrust upon my own child. So the lesson, for me, is that fear bestows power exactly where you do not want it. I do not want to live in fear. I am no longer turning away or avoiding what scares me. As I have said before, I have to face my fear, stare it down, refuse to view it as a possible failure, and believe that life just has hurdles, hurdles that we can and will jump if need be.

Thank you for your love and support. We know it is there. We feel it. And it sustains us.

Much love to you.

“Once we truly know that life is difficult — once we truly understand and accept it — then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.” ~ The Road Less Traveled (Paul, this always reminds me of you)

Well, Nico did not make counts today, so our finishing this last phase of intense chemo is delayed another week. We will try again next Wednesday and see. We are very disappointed because we did not want Nico to be on chemo on his birthday and we wanted him to start school the first week of October. Please keep our little guy in your thoughts as we try to get this show back on the road and close out our long tour through intense chemoville. They say good things come to those who wait. I think Nico has waited long enough. We will update next Wednesday. Thank you for your continued love and support.

I promised some more lyrics when the time was right . . .

Fish in the sea, you know how I feel
River running free, you know how I feel
Blossom on the tree, you know how I feel
It's a new dawn
It's a new day
It's a new life for me, and I'm feeling good!

Nico swallowed his last Decadron (steroid) this morning, and this marked the completion of DI Part 1 (of 2). I cannot explain what a relief it is to get a weeklong break from chemo. Nico’s blood counts will hopefully recover over the next seven days, and then we will start the second half of DI, the final four weeks of intensive therapy. Obviously the Decadron is not out of Nico’s system yet, but I think some of the effects of the other chemo drugs are wearing off because today, for the first time in weeks, Nico wanted to play. He even asked to go on a walk and was able to walk on his own for several blocks. This is great progress! You do not realize how weird your life has become until you have these short moments of normalcy and think, “Oh yeah, we used to go on long walks.”

I am continuing my practice of positive thinking. And I realized today while watching my little warrior walk down the sidewalk, pushing his umbrella stroller full of Toy Story figures that he is really a strong and resilient human being. People always tell you that kids are resilient. Well, it is not just that he is a kid. He is a determined, focused, and strong-willed little man. Nico is a fighter. Nico is a warrior. Of course we have no choice but to endure this course of treatment. But the way that he tackles his daily life shows me who he is as an individual. I get to watch him create his own life’s path everyday and it amazes me. When he was an infant, he was always very sensitive to everything – bad sleeper, allergic to food, sensitive to noise and light, etc. I did not view him as weak per se, but as a highly sensitive child, and maybe more needy than other kids. I do not view him this way anymore. Yes, he is a sensitive child. But Nico is not needy as much as he is determined. He is determined to have things his way, on his terms, and no matter what has been thrown at him in his first few years on this earth, he is going to handle it his way, fighting for exactly what he wants. It is not my way, his dad’s way, or his doctor’s way . . . Nico defines himself. He is inspirational to me and I am lucky to have this feisty little pain in the butt as my son. Exhausted, but lucky.

Nico lost all of his hair over the last 48 hours. He clearly does not like the change since he hides his face when he sees a mirror and has suddenly taken to wearing hats. He will get used to it, and when he does, his hair will grow back. That is life. I view the hair loss as part of his metamorphosis. The hair loss is just part of the cocoon. Nico’s body is in the process of change. His bone marrow is learning to make strong healthy blood cells. The chemo is guiding this process, and to me the hair loss shows that these drugs are in his body and doing what they are supposed to be doing – killing the cells that do not belong. The hair is collateral damage and will grow back.

I know I might sound new-agey, but I am telling you that if you cannot spin this process to the positive, you will perpetually live in a dark place, and I do not think that dark places are conducive to healing. So as much as I can, I am trying to gain something from this. And that something is to create a positive environment for my child to thrive and blossom into the person that he already is. I am not going to lie, I am still afraid to hope or look too far ahead. But for today, my bald warrior and I are dancing and singing to Feeling Good.

This phase, DI, is two months long with a potential break in the middle to let Nico’s blood counts recover. We have almost completed the first month. We are done with the IV chemo for this month. No more of the nasty Doxorubicin; they do not use it during the second month. That is a relief. We are currently in our second round of steroids, so things are a little hairy over here, but luckily there are no steroids in the second half of DI. Also, our oncologist is back from his trip. Our oncologist did not agree with either of the other two doctors regarding the injection that ended up in my lap. He said that he spoke with the nurse that did the injection, and she could not guarantee that Nico even got half the dose. Our doctor said that even if Nico missed 1/10th of the dose, he thought it should be made up. His exact words were, “This is a no-brainer.”

This made me reflect on two things. First, this is why we prefer our own oncologist. He is cautious. He also understands Jeff and me. We feel like he is invested in Nico’s outcome and this is very important. Second, I am so glad that the nurse was honest. I think it would have been tempting to downplay what happened. I think a lot of people would have gotten defensive. She did not get defensive and instead plainly stated that she had no idea whether Nico got the chemo. I was really grateful for that. Problems cannot be fixed when people deny mistakes happen. Blame is not necessary, just address the issue – Nico might have gotten less chemo than he needs. So I felt that things were remedied. It means that we go back on Monday for a seventh shot though. Nico’s legs have to be aching. I cannot even imagine and don’t want to.

Today we went to clinic for the sixth injection and while loaded up on steroids. Nico has had it. He flipped out. He became hysterical once he realized where we were going. When kids are on steroids they frequently obsess over very specific things. So Nico started to obsess over wanting beans and rice on the way to clinic. Hey, I’m from Arizona and my kid knows his Mexican food. Nico insisted we immediately go to our favorite Mexican restaurant (instead of clinic of course). Once we were in clinic there was probably a good thirty-minute period where he screamed, “I want beans and rice” over and over while crying his eyes out. He would not be distracted. Toys, candy, root beer – I tried it all. Our favorite nurses were there again today. Separately each asked sincerely, “How can I help you?” I did not think there was anything in the world that was going to quiet him, but I was hoping he might just pass out from sheer exhaustion from all the screaming. I was a little nervous because all the families in clinic were subjected to this fit (we all sit in one giant room to get chemo). But I had to stay focused on my son. I am there to support him. That is my priority and frankly he cannot help it. This is not my boy, this is my boy pumped full of toxins and steroids. I reminded myself that every parent in that room knows what roid rage looks like on a child.

Then two of the nurses approached me and said that he might need fresh air and light. I did not feel they were trying to get rid of us. I felt they were really trying to help. The clinic is windowless and a little depressing, so fresh air seemed like a great idea. The nurse told me that we could leave as long as another nurse was with us. Nico has to be observed for a reaction for an hour after each shot. So one of the nurses agreed to walk with us down the hall. At first Nico continued to scream down the hall, but at least the other families were getting a short break from the yelling. The nurse kept calmly speaking to Nico, suggesting things he might like to look at and asking what he saw. After several minutes, he suddenly just stopped crying. Then we spent the next 30 minutes just walking around, outside the hospital, picking up rocks, riding the elevators. Then the nurse pulled him around in a wagon that he found in the hallway. She let him lead the charge and was so patient with him. She said that the nurses saw how hard this was on parents, and know that it does not stop when we get home. She said she just wanted to help us.

When I got home, I got a little emotional as I thought about how the nurses treated Nico and me. You spend so much time and energy trying to cope with this drug-ravaged little two-year old, and you know that in general people do not understand. They think he is being a brat or that we are bad parents. They cannot comprehend what the drugs are doing to him. But these nurses “get it.” They did not judge him or me, they just helped, and what a help it was. For thirty wonderful minutes Nico was just a little boy playing with rocks that happened to be outside a children’s hospital. It was a gift. When we left Nico calmly told the nurses “Thank you very much.” Yes, thank you.

P.S. We’re having beans and rice for dinner.

I waited to post until I was less: worried, upset, distressed, depressed and angry. And I am much less of all of those things now. This is all harder on Nico than us, it has to be, but from the outside looking in, it probably looks harder for Jeff and me because we do not fair as well (even without chemo). We started the dreaded DI, and so far I have to say it is as bad as everyone warned us it would be. On the bright side, one of the doctors told us that the last month is easier than this month, and on the even brighter side, this is the last phase of intensive treatment (fingers crossed until my knuckles are white).

The hardest parts of the phase are three fold. First, he gets a lot of chemo, and I mean A LOT of chemo all at once. And he gets some really nasty chemo in that mix. We are only a week in, and he is already neutropenic. That means that we are pretty much stuck in the house, limited visitors and will likely end up hospitalized in the next week or two. Second, he is on high, high dose steroids. When I tell you it is a high dose, I mean it is a higher dose than my adult brain tumor patients took (back in the day when I worked in neuro) and he is less than 30 lbs. Within hours of the first dose, Nico has trouble coordinating his walk, loses impulse control (and he is kind of a control freak so this distresses him greatly), and is just generally miserable. Then add to that the chemo that causes neuropathy and he wants to be carried from room to room because walking is just too difficult. Then add to that the chemo that causes heart damage and makes him throw up, and you get the picture. Oh and PS – that’s not even all the chemo. Third, Nico’s allergy to one of the main chemo drugs means that he gets twelve shots this phase (6 for every 1 IV dose missed) and these are not your garden-variety injections. They hurt badly. When we walked into the infusion area of clinic on Monday, I heard a blood-curdling scream and knew that the little girl behind the curtain was getting one. Sure enough, a few minutes later she appears with the tell tale sign – a bandage right in the middle of her bruised thighs. They give the shots on Monday, Wednesday and Friday and you can imagine how number 6 feels on a 27 lb frame. Nico is starting to talk more and more, so he told the nurse before we left on Wednesday, “My leg was really scared. That shot hurts really bad. And I was really crying!”

So back to my opener, the first day of these wretched shots that require we sit in clinic all afternoon three days a week, started out like this: Nico and I got to a very busy, very packed clinic. There were two little girls, just a little older than Nico, both with the same diagnosis, playing together. He played near them, and that’s about as much contact as he has had with other kids in months. He seemed pretty content by this. Plus, I got to talk to two other parents and we all got to commiserate. That is probably why the wait did not irritate me until we hit the two-hour mark. We did not know if we even had a nurse, or if anyone had even called for the chemo. So I started to get antsy, and maybe this made his nurse antsy? I do not know. But what I do know is that when the shot arrived, Nico was sitting on my lap (where he always sits for chemo because he is afraid) and somehow the chemo ended up soaking through my pant legs and onto my skin rather than in his thigh. FYI, one injection of the 6-injection course of this drug, for Nico’s size, costs approximately $20,000. I am not exaggerating. So about $3,000 worth of chemo was wasted. I am not going to speculate about what happened, but my first concern was that my son did not get all his chemo, and we want him to get every last drop of this stuff. You get one bite at the frontline apple, then you are to maintenance and you just hope that it was enough to kill every last blast cell in his body. Unfortunately, our doctor was out of town and the doctor in the clinic that day is not what I call a rock star. We had a bad experience with her before and to sum it up: if you are not her patient, she does not give two cents about you. Period. So, no doctor actually spoke to us about what happened, but the above-mentioned doctor, instead relayed through the nurse (and this is a quote for real) “It’s no big deal. He gets plenty of chemo.” Say what?! So he needs six injections for every one missed IV dose unless we spill a dose and then he only needs five?! I texted Jeff to tell him what happened and he responded, “So Nico was stabbed and you got a dose of chemo?” That pretty much summed up the day, never mind that the nurses administer this stuff in a modified hazmat suit and I sat with it all over my skin for 15 minutes (when they got a pair of scrubs for me to wear) and don’t forget that all this fun took over three hours.

On Wednesday when we returned to clinic, Nico was supposed to receive his weekly IV chemo, plus another one of these shots. On the days you get IV chemo, generally an oncologist also sees you. But our doctor was still out of town, so Jeff came with me to clinic to get an actual answer from a doctor and to watch the nurse doing the injection (since I cannot while holding Nico). Of course, because this kind of stuff happens to us whenever our primary oncologist is out of town, the front desk told us that we were not scheduled to receive chemo, and we were not being seen by a doctor. There is a long story about how this screw up happened, but it was another screw up on their part. I think by this point Jeff and I were just exuding contempt. I was actually close to crying out of frustration and all the veins in Jeff’s neck were standing out. That is when we spotted our 2nd favorite doctor in the hall (who we never seen in clinic usually, only when we are in-patient). I told the front desk person (nicely) that we HAD to see a doctor and we HAD to get chemo today and I added that it would be a very good thing if we could see a doctor that we trust and suggested the one in the hall.

Well, the story ends pretty well. The doctor agreed to take time out of his busy day and see us. He acted like he had all the time in the world, and I am sure he did not by the way his pager was going off. He spent over 30 minutes talking to us about what happened. There is a margin of error in the regimen that allows for skipped doses. The protocol is written to give as much as is tolerated, while not creating too much toxicity. The doctor was confidant that Nico got at least some of the dose because the nurse insists that she saw the skin on his thigh bleb. He thinks there is more danger in potentially giving him too much than not enough. It was a lengthy explanation and one that satisfied us although it does still make me nervous. The clinic also gave us one of our favorite nurses that day. We don’t know if that was just luck or because we ended up breaking down in front of the Child Life Specialist. But I felt like the universe knew that we needed a small break and luckily we got two (a great doctor and a great nurse). You have to remember, we are worried almost all the time, the process itself is incredibly stressful, and watching your child suffer is unbearable. But on top of that, when Nico is on steroids, no one in the house sleeps. He wakes up all night long and even though he is exhausted, sleep just does not happen. All of these things combined just make you unable to control your emotions, and pretty much nuts.

I have been reading more of the other clinic moms’ blogs, and I have to say that they seem to be a lot more positive than me! I really am trying. I blame the fact that Nico is higher risk than most of the kids in the other blogs. He gets a lot more chemo than they do. I would not say that I am jealous of them, but we take twice the steroids, we take three times the doxo (heart damaging chemo), we take more of everything, and you can see the difference when you look at our kids. Nico is having a very hard time this round. Today, I decided to start reading to Nico a particular book that we used earlier in treatment called “Chemo to the Rescue.” I thought he might need a refresher since he is getting the painful shots again. There is a part of the book that made me cry today (maybe I was the one that needed a refresher). I kept my voice steady, but tears were streaming down my face. Nico stopped and yelled in a slightly distressed voice, “You are crying!” I did not know how to respond. Nico has never called me out for crying before. I just told him that I knew that he did not like taking the medicine, and that I did not like making him unhappy. But the medicine was making his blood strong, so we had to keep taking it for now even though it was hard and made us sad sometimes. I have no idea what he understood. But here’s the part of the story and how I will end.

I’m high, I’m low
I’m going through chemo.
No easy fight I know,
But I’m a superhero!
We’ll make things right,
With chemo day and night.
Watch chemo zap it down,
And turn my life around!
Against my will,
I take another pill.
It’s going to take some time,
Before I’m feeling fine.
Be brave! Be strong!
And take away what’s wrong.
It’s going to be alright.
The future’s looking bright!

(CHEMO to the rescue! A children’s book about leukemia)