Wellness Wednesday

Nico’s Montessori school started holding Wellness Wednesdays. On that special day, all of Nico’s friends wear their Team Nico shirts and/or orange (the leukemia awareness color) and special time is set aside to think positive and healing thoughts for Nico. Below, I have attached a slideshow of the first honorary day. Almost all of these photos were taken by one of Nico’s friend’s moms (Johanna), and she really captured the children’s personalities and the spirit of the day. These photos make me laugh and cry. Thank you to all of those pulling for our champ. I know it is helping. Much love.

P.S. I am also continuing to update the Team Nico photos from other friends and family on the slide show dated 04/10. We really love getting the pictures and Nico loves seeing everyone in his shirt. Thank you!

I previously mentioned that a serious marathon runner offered to wear a Team Nico shirt during one of her races. One of these races was the Boston Marathon (I told you she was serious!). Obviously, real marathon runners do not race in Fruit of the Loom. So Adriana actually had her own Team Nico shirt designed on athletic wear at her own expense. This was a very meaningful gesture and extremely exciting for our family. Our son was to be championed in one of the biggest-deal (if not THE biggest-deal) marathons in the country. The day of the race, I turned on the television so that Nico could watch the love of his life, Dora the Explorer, just as the reports started coming in from Boston. I panicked. I was worried that Adriana was injured. I immediately checked Facebook to see if she had updated her status. These are the times when I love Facebook because moments earlier she had posted that she was unharmed. The panic subsided and was replaced with general sadness over what had happened. This marathon is something that people look forward to, and this year, our little boy’s struggle was being championed in it. We had stepped right up to claim our bragging rights – someone is running for Nico. There is not a lot that we have to look forward to in our immediate future, but this was a bright spot.  Instead of the race, the day became about mutilation and senseless death, including the death of a child waiting for his dad to cross the finish line. When you lose all control in your life, like we have, you get superstitious (I know we are not alone in this based on conversations with other parents in similar spots). And I started to fearfully wonder aloud if this was a bad omen. Jeff assured me that the Team Nico shirts and terrorism were not linked (that was the gist anyway). Then the sadness was replaced with anger. Like everyone else, I was just angry that this had happened.

A few days later, Adriana wrote me. The whole experience was harrowing for her in a way that most of us cannot imagine. But she wanted me to know that she wore the shirt and finished the race. She told me that while she ran, even though her racing bib had her name on it, people on the sidelines yelled “Go Nico!” She said I would never believe how many people were cheering for our boy. She thanked me for letting her feel like part of the team and told me she would wear him again in other races. I admitted my neurotic worrying and hoped she would not associate the experience with the shirt (jinxed) and how she replied really moved me. Adriana said she did not feel she had really properly trained for the race this time and that she had done everything that you are not supposed to do before a big race. So she changed her own personal time goal, assuming that she was not in shape enough to finish as strong as she had in the past. But the morning of the race, as she started running, she felt so much energy. She thought there was no way she could sustain the momentum she felt. But somehow she did sustain it. She ended up finishing at 3:42, approximately 20 minutes ahead of her goal and approximately 20 minutes before the bombs went off at the finish line. She wrote: So if anything, I am pretty convinced the t-shirt gave me wings. LUCKY T-SHIRT!

Thank you, Adriana.

P.S. Adriana is not comfortable sharing her photos from the race in light of all that happened there. But she is allowing me to post them on warriornico.com (after this post). Terrorists at the marathon murdered innocent people, permanently injured many and made all of us feel less secure in our own country. But these murderers will not prevent Jeff or me from sharing these beautiful pictures of Adriana’s gift to us. Let these photos serve as a reminder that there are more good people than bad, more love than hate, and that Team Nico (with all your prayers and positive thoughts) is a very powerful force.

Nico started the series of Erwinia shots on Friday. He did very well. We can only hope it continues, but by the 18th, we are guessing it will be more difficult. Nico also got blood on Friday and he is clearly feeling so much better. He is much happier and full of energy. His regular oncologist will be back on Monday when we go for shot #2, and we are very happy for his return.

Nico’s school, Montessori Community School of Salt Lake City, continues to support us in amazing ways. The school held a Zumbathon for Nico, and we are told the energy was incredible. One friend texted to me, “there have to be at least 75 people here, maybe 100, all dancing their butts off for your little boy!” Another friend explained that as the Zumba instructor (also a teacher at the school) encouraged people to “dance for Nico,” the energy in the room exploded as everyone gave it 100% in a show of love and support for our little hero. The Zumbathon ended up raising over $2100.00 for Nico’s medical expenses that night.

This is only one example of how this school has supported our family. Parents of Nico’s classmates brought us dinners twice a week for months. It only stopped because we asked them to as we started to feel like gluttons. As posted earlier, Nico’s class made a special quilt for Nico with all of his friends’ handprints, crafted on Nico’s favorite color (yellow), and covered in Nico’s favorite things (cars and trucks). The class also raised money for groceries and presented over $700.00 in grocery gift cards to Jeff and me. The school alone ordered over 40 Team Nico shirts. Nico’s teachers still visit him regularly, sometimes bringing him special gifts, and always lifting his spirits. His teachers regularly send Nico videos of his classmates singing familiar songs (which he watches over and over while singing along) and sending him special messages (We love you Nico!).

There are so many people to acknowledge, like our friends Kristin and Andrew (aka The Front Porch Fairy) who have left gifts for Nico on our doorstep during particularly bad weeks since he was first diagnosed. Numerous friends, family members, and even friends of family members have sent gifts, cards, purchased shirts and made financial donations. These gestures are incredibly meaningful to us. The words of encouragement, the people still following our updates, each and every communication is a showing of support. All of these things are sustaining – there is nothing that means more than seeing others show concern, love and care for our little boy.

We want everyone to know that we appreciate you and that we can never convey how much gratitude that we feel. This experience has forever changed us. And upon reflection, we realize that in the past we should have given more, done more, reached out more to other people. We also realize how many really amazing and generous people are out there – way, way, way more than we believed to exist in the past. There are more good people than bad, we promise, and this is coming from two people who referred to themselves as misanthropes more than once.

So thank you sincerely from the bottom of our hearts. Thank you for caring about our little man, and we promise to pay it forward.

Housekeeping: If you bought a Team Nico shirt and would not mind if we posted a picture of you on the WarriorNico.com site, please text or email a picture when you wear the shirt. We would love to post pictures of our friends and families showing their support! It is a real morale booster for Nico to see people wearing his “Nico shirt.” My number is 202.657.7782. Jeff’s is 703.509.2284. My email is shannonjsnow@gmail.com. Jeff’s is crom32@yahoo.com.

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 walk.
I fall down.
Meanwhile,
I keep dancing.

Rabbi Hillel

If you have kept up with all the posts, you might recall an entry Jeff wrote a month ago about an anaphylactic reaction Nico had after receiving blood products and a type of chemotherapy called PEG. We had a real issue with the whole sequence of events because no one could be sure whether Nico had reacted to the blood (which he had reacted to in the past) or to the PEG. This was especially concerning because he was scheduled to receive PEG multiple times and if he was allergic to PEG, his next exposure would result in a more severe reaction. And trust me, the first reaction was severe enough. So we got our answer today. Nico had an anaphylactic reaction to PEG, and indeed the reaction was worse. So here we all sit in the ICU. Nico appears to have recovered better than Jeff or I, but that is par for the course. This time was hard on him though. When we got to the ICU and he realized that we were not going to go home, Nico became completely hysterical. He was screaming “take across street to car… take car home” repeatedly. It was heartbreaking. But the most heartbreaking part for me is that because Nico is allergic to PEG, and cannot receive the three remaining doses due, he will have to instead receive Erwinia. For every one dose of PEG missed, Nico must get six doses of Erwinia and the Erwinia can only be administered as an intramuscular shot (in the thigh).  It is just one more thing.

Sometimes I do not really know how we are surviving this. It is a day-by-day thing. We just get through it. We wait for this phase to be over and try not to think too much about the next phase, which is potentially even worse. Please keep us in your hearts. Nico really needs a break.