Please say a prayer, send a positive vibe, chant or whatever else floats your boat as long as it is positive! We are learning how to think positive and think big! Nico is teaching us.
Lots of love to everyone still supporting us. We appreciate it!
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Our son, Nico, was diagnosed with HR pre-B ALL (acute lymphoblastic leukemia) on January 2, 2013. This is a record of Nico's progress.
We just got the results of Nico's blood work, and we made counts (barely)! We needed an ANC of 750 to start, and Nico hit 800. So here we go! It is going to be rough, but we are armed for battle. Nico's eyelashes finally grew back and he's got a lot of hair right now. But this is the phase when the kids usually go cue ball. So I am going to post a video on WarriorNico.com in honor of the next leg of our trek called "When I Get Bald." It is a song written by a dad on the listserv that I mention frequently. He is a musician and wrote an album with his daughter as she went through treatment for leukemia.
Please say a prayer, send a positive vibe, chant or whatever else floats your boat as long as it is positive! We are learning how to think positive and think big! Nico is teaching us. Lots of love to everyone still supporting us. We appreciate it!
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We really did not comprehend what we were about to experience when we took Nico to meet his Wish Grantors at the Make-A-Wish Utah headquarters. Over the phone, his Wish Grantor asked me a few questions about what Nico likes, but I did not realize how closely he was listening. When we got to the front door, there was a yellow balloon (Nico’s favorite color) and a personalized sign welcoming him. Inside, there were huge displays of Lightening McQueen, Mater and Mickey Mouse along with more yellow balloons. And when his Wish Grantors greeted us upon entry, we found one of the Wish Grantors was actually Buzz Lightyear! How many kids get Buzz as their Wish Grantor? Nico was thrilled. While he was initially shy, and referred to Buzz as “Space Ranger,” after he saw the giant displays of his very favorite things on earth, he was running amok and yelling “Look! Look! Look, Buzz!” Outside was a wishing pond and foot bridges and it just got cooler the more we looked. The ceiling is covered with stars of children who were all granted a wish and when Nico’s wish is granted, he will raise a star too. After Buzz presented Nico with a bag of goodies, including a character from the Cars movie, a Matchbox car and other various things he adores, we talked about what Nico loves. Then everyone wrote his and her personal wish for Nico on a slip of paper and we helped Nico write his own wish down too. We then rolled up the slip of paper with Nico’s wish, and slipped it into this bronze canister that felt very heavy and serious. Nico was presented with an old fashioned and magical looking skeleton key and we went to the wishing room to declare Nico’s wish. Once in this room, which was like standing before Oz, everyone present read to Nico our individual wishes for him. Jeff’s included Nico playing first-line center on the US Olympic Hockey Team, and this provided some comic relief to an otherwise emotional experience. Then we took this heavy bronze canister and followed blocks of light that lit up on the floor. These lights led us to another strange conical bronze receptacle and we slipped our wish inside. We then took this bronze cone and followed the light once more to another strangely shaped bronze receptacle. Once the second and third containers were joined, it formed a giant bronze wizard’s hat and Nico’s wish was received! It was fun, emotional, overwhelming and super-cool. After this ceremony, we had ice cream and cookies with Buzz (and filled out a lot of paperwork). Now, we will wait and see what the wizard’s hat grants Nico! There is no hurry since he still has a difficult phase of chemo ahead. The Wish Coordinator of the Utah Make-A-Wish was guiding us throughout and at one point, seeing how excited Nico was, said, “I think declaring his wish might have been his wish!” What an amazing experience. Thank you, thank you, thank you Make-A-Wish! One of Nico’s two Wish Grantors (Buzz Lightyear) was a recipient of a Make-A-Wish wish himself. He had bone cancer as a teen. His wish was to meet Journey, and he did! He wanted to become a Wish Grantor once able, and Nico is the first child for whom he plays this role. Nico’s other Wish Grantor was the Wish Grantor for the other (Buzz)! And she became emotional as she explained their relationship. This was very special for all of us. So after feeding Buzz cookies and ice cream, Nico gave him a huge hug and we left. It was a happy experience and we are very grateful for it. P.S. There are some pics and videos after this post (on warriornico.com), but they are almost all out of focus because Nico was too excited to standstill. Well, we're once again delayed, this time before we even started! Nico is neutropenic (I probably should not have taken him to Whole Foods yesterday) and we cannot start the dreaded DI until his counts are up. I wish I could say this is a relief. But every time your kid's counts are low, you always worry about what it could mean and fear the worst. It is just human nature and no matter how much positive thinking I try, my brain still goes there. I am taking solace in the fact that Nico has appeared to have a cold for a few days, and viral exposure can depress neutrophils quite a bit. So we will just play the waiting game and then go through the ritual of worrying before night-before-a-new-phase all over again. Have I mentioned that this is not fun? Meh. It is what it is. I will focus on the positive and be thankful that he refused my imploring that we go swimming yesterday. That would have have been bad. I guess Nico's instincts are right. I better start listening to him!
We start the last phase of frontline treatment, Delayed Intensification, on Friday (assuming Nico makes counts, and he should). This phase is hard to write about. I tried to get Jeff to update this one, but like me, he is really scared and worried. Since he is trying to stay positive, Jeff did not want to write about it. On Friday, Nico will get Vincristine (the chemo that makes his legs and jaw hurt). He will get a lumbar puncture and they will inject more Methotrexate into his cerebrospinal fluid. He will again start the steroids that turn him into a bloated, raving maniac. And for the first time, he will also get a drug called Doxorubicin. He has had all the other drugs, and they are bad enough. But the Doxorubicin is toxic to his heart. In fact, it very commonly causes heart damage. Most of the time, the kids will not feel any effects of the damage it does, but the damage is still there. And it hurts our hearts to think of this drug being given to our little boy. But this journey only has one path. We must continue to walk through this dark place and hope that there is light at the end. Please give Nico an extra thought/prayer/meditation on Friday. Just send a little love our way because we will need it. P.S. This is a recent photo taken by "our photographer" and friend, Amber Schiavone - http://schiavonephotography.com/ Nico and I have a tradition. Whenever we get released (yes, like a prison sentence) from the hospital, we listen, sing and dance to a specific song. Eventually I will attach the audio file, but for now here are a few of the lyrics:
Birds flying high, you know how I feel Sun in the sky, you know how I feel Breeze drifting on by, 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! I will give you another verse after we clear the next hurdle. Wow, Interim Maintenance was rough, but we ended strong. Every admission has a variety of bumps, but it is getting easier. It is not easier because the bumps are less sucky, but because I think we have perfected raising hell: we know what nurses are knowledgeable and skilled, we know where to lodge complaints, we are confidant in our own knowledge of Nico and his protocol, and we know 100% that his primary oncologist and nurse practitioner have our backs. So, we did this. We got through it! Physically this series was hard on Nico’s body. After each dose of Methotrexate, our boy has developed blisters and sores from his throat to his bottom, and requires a lot of oxycodone just to drink water. But like Jeff said, these trials do not stop him in the least. He is still Nico, doing what Nico does. We have Delayed Intensification next. This is supposed to be the worst of the worst, but once we are through, we are out of front-line treatment! Nico’s world can resume some normalcy at that point (fingers crossed). We start DI July 19th and it should run approximately eight weeks. So we’re gearing up. Thank you for all the love and support. P.S. If you would like to see a 15 second clip of Nico doing his I’m-out-of-the-hospital dance, I posted one directly after this update. |
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