No news is good news! Updating the site started to feel like writing a Christmas letter, and I am happy to be so boring!

Make-A-Wish granted Nico’s wish in a very cool ceremony that included cake, a giant truck, star-raising and the wonderful support of family and friends. We are going to Disney World over Christmas and staying in a really amazing resort called Give Kids the World.

I do not think that I appreciated how special the Make-A-Wish headquarters in Salt Lake City were before this party. Apparently there are only a few buildings of its kind and Utah got the first. Wish Kids designed the entire structure, known as a Wishing Place. I took some pictures of the Wishing Place during a Halloween party that we attended during daylight hours and will include them in the pictures.

Nico returned to school! Nico is back in the Moons Class at Community Montessori School. I cannot explain how much support this school has given to our family through this. Nico cried for a minute or two the first day, less than a minute the second day, and did not even say goodbye to us by the third. The second and third day, Nico complained when I picked him up from school and asked me to take him back. Some of his older friends have moved into another class and they have been replaced with younger friends. Nico’s reaction to this has provided a lot of entertainment. He is incredulous at why these “little friends” will not answer questions, and complains that they cry too much. He is learning so much from having other children of different ages around. Of course, he caught hand, food and mouth disease the first week, but his fever stayed low-grade (knock on wood) and he never complained.

This is not over, but we are regaining some normalcy in our lives and not taking any of it for granted. Pictures say it better than I can, so I am posting some slideshows after this post on WarriorNico.com of Nico’s packed social calendar.

We officially recovered from DI yesterday and started the “maintenance” phase today. This is the phase Nico will be on for the next three years. We have been asked a lot what maintenance entails, and I realized I should probably post the information on here based on how surprised everyone is by my answer. Maintenance is not easy, but it is way better than front line from what I am told. Actually, it is almost the same medications, but they are spread out a lot more.

6MP
Nico takes a chemo every single day that is called 6MP. We get it in a liquid now, but if Nico learns to swallow pills we will go that route. As of now, Jeff has perfected squirting it into the side of Nico’s mouth while he is sleeping. He never wakes, and does not even know he takes it. The only issue that we have had in the past is that it does make him nauseated and he wakes up some nights to throw up a few hours after getting it. Our oncologist said that most kids adjust to the initial nausea.

MTX
Nico takes Methotrexate once a week by mouth. The dose of these drugs is determined by weight. Right now, he takes 4.5 tablets at one time, once a week. Methotrexate is also what they inject into his cerebrospinal fluid during lumbar punctures. He will still need to get 2 lumbar punctures every 3 months (the 3 month increments are referred to as cycles). He gets sedation for these, and since they started using Versed and Ketamine for sedation, he does very well and does not remember a thing (thank goodness).

Prednisone (Steriod)
Nico will take Prednisone twice a day for 5 days every month. I am dreading this. He reacted pretty badly to Decadron (a different steroid) in the past. He has no impulse control and gets very violent on Decadron. He is also generally miserable – angry and sad. Some of the other parents report that their kids do a little better on Prednisone than they did on Decadron, and I hope this is the case for us. Only the high-risk kids switch steroids during maintenance. The average-risk kids stay on Decadron. In average-risk kids, Decadron has been shown superior in treating leukemia. But the risk of developing a very nasty condition called avascular necrosis (AVN) is much higher with Decadron. Since studies have not proven that Decadron is superior for high-risk kids (because we get a lot more front line chemo), Children’s Oncology Group takes the position that it is not worth the risk of AVN. So Prednisone it is. We started that tonight, and I am very motivated to teach Nico to swallow pills because it clearly tastes very badly.

Vincristine
Nico will get Vincristine once a month intravenously (through his port) in clinic. This is a staple in treating leukemia, so I love this drug, but I hate this drug. It causes neuropathy, and Nico has pain after he has it. It becomes obvious because he starts to walk on his tiptoes, which is a red flag for neuropathy. We do special exercises with him and bought him a pair of high-tops to prevent him from walking on his tiptoes. We keep a close eye on him.

Septra
Nico has taken this antibiotic twice a day, every Monday and Tuesday since diagnosis. The Septra is meant to prevent a specific type of pneumonia to which immunocompromised people are especially susceptible. He does not seem to mind taking this stuff (it tastes OK), but the draw back is that it can cause neutropenia (low white blood cells). The chemotherapy agents are titrated based on neutropenia, so if a child is sensitive to Septra, you could end up lowering chemo when it was really the Septra causing counts to crash. These kids need to get as much chemo as they can tolerate. So I am watching! I have thought that Nico is sensitive to Septra for a long time, and I have brought it up to the doctors more than once. They said they would consider the Septra a potential problem depending on how he does in this phase. The problem is that the alternatives to Septra have their own issues. So we shall see.

In addition to the above, we have all our as-needed medications – Oxycodone for pain, which he gets from Vincristine and from steroids; Zofran for nausea, which he gets from 6MP; Zantac for heartburn that he gets from the steroids; and Miralax because the Vincristine makes people constipated.

It is a lot of damn drugs. But the doctors and nurses tell us that this will become old hat. I hope so because it is for three more years.

The friends that we made throughout this process hit maintenance before us because we had a lot of delays. Maintenance has not looked easy so far. Apparently, the beginning has a lot of bumps. I will explain it the way the oncologist told it today. They want to start all these medications and then give the kids’ bodies time to adjust around them. The idea is to titrate the medications based on blood counts, but the hope is that they can stay on these starting doses. So they do not want to check the blood too often for fear of titrating too quickly. So they won’t check Nico again for another month unless he gets a fever. Basically, we are going to give him chemo for a month, and if it crashes his counts, we won’t know until he is symptomatic. In the interim, we are supposed to let him live normally (go to school, hang out on playgrounds, do normal kids stuff). I am not going to lie – it makes me nervous. I am going to comply, but I am anxious about it. I wish you could check neutrophil counts at home the way people check blood sugars. But I understand the rationale for not checking (but I still wish I could!). So, fingers crossed.

We did speak with the oncologist today (not our primary, but one that we like) about Nico’s knee. He did suggest the possibility of AVN, but for right now we are just going to watch it. If he is still having pain in a couple of months, they will want to do an MRI under sedation. Hopefully, the pain goes away and stays gone.

I actually have a lot to post regarding some stuff that is going on with Make-A-Wish, but this post is already too long. The picture I am attaching is from a Make-A-Wish event (Prince and Princess Tea Party). I will try to update about it over the weekend because it was really cool.

Love to you.

We have not officially started maintenance chemotherapy because Nico’s counts have not quite recovered from DI. Nico’s blood work continued to drop for weeks after DI was officially over, but this past week he was just under the threshold and is definitely on the mend. Nico has been eating like a horse, a welcome change since he has not grown while on front line chemo (the doctors assure us that this is common), and playing very hard. We even tried out riding the bike that he got last Christmas and never got to use. The biggest concern that we have right now is that Nico continues to complain of knee pain. He frequently wakes up in the night crying from the pain. It seems to come and go, and generally it does not seem to limit him, but when he has it, it is very intense. We hope to see Nico’s oncologist again this week when we start maintenance (fingers crossed), and get to the bottom of it.

Today was the CureSearch Walk. If we are Facebook friends, you have already experienced the onslaught of posts about CureSearch. Jeff and I decided that we wanted to participate for several reasons. First, a lot of the cancer non-profits contribute close to nothing for childhood cancer research. For example, Leukemia Lymphoma Society contributes one cent for every public dollar donated. The American Cancer Society contributes two cents for every dollar. Less than 4% of federal funds allocated for cancer research is directed to childhood cancer (and that is all childhood cancers combined). Second, Jeff and I feel a tremendous amount of gratitude for the fairly incredible advances made in the treatment of leukemia (in spite of this funding gap), and wanted to give back in some way. Third, the Walk corresponded with Nico completing front line chemotherapy and onto maintenance. So this Walk served as a sort of coming-out for Nico.

Nico has not been able to participate in a large gathering or socialize with other children outside of the hospital (and that is still extremely limited) for over ten months. Nico woke up this morning knowing that his Aunt Casa (Jessica) flew in from Phoenix for a special event and expecting that we were all going to walk. But he was totally unprepared for this event. When we first arrived to Sugar House Park, Nico had a complete meltdown. He was totally overwhelmed. Aunt Casa knows him very well, pulled him aside and he calmed down. Nico still stayed away from the group for the most part and would occasionally climb into his stroller and shut everything out.

Then his friends started to arrive, friends that Nico had not seen in over ten months. That morning, as we were getting ready to leave for the Walk, Nico insisted we bring a box of Annie’s shells & white cheddar (his favorite). When Nico recognized his friend, he pulled out the macaroni and explained what he had and how to make it. His friend excitedly showed his mother the box, and suddenly, Nico had found “his people.” Later another friend showed up, a friend that Nico played with regularly before, and I tried to stand back and just watch. Nico was particularly overwhelmed at that time, but before I knew it, Nico and his friends were playing on the side of a grassy hill. Jeff was choked up, and I felt just a little afraid to exhale, but it was a really important milestone for all of us.

I know that we have written many times how overwhelming the support has been, but again, we were really humbled by the outpour. Friends from my college days (and that was a long, long time ago) drove up from Provo with their families. The Montessori Community School pulled through big time again – Guides (teachers), the Director, other parents, even parents that we never met before, and lots of friends (classmates) of Nico. Nico’s guide, Miss Sophie, has been there for our boy and family at every turn, and even though she never takes credit, I cannot imagine what the last year would have been like without her. Overall, Team Nico raised over $6,000.00 for CureSearch. Salt Lake City raised over $106,000.00, and CureSearch said this was the most successful grassroots fundraiser they had seen in over ten years.

After this post, I am attaching a slideshow of pictures from the Walk and a picture of our dear friend Adriana, who ran her 10th (that is tenth!) marathon this year while championing our warrior on her shirt. I think the day was a success. I am exhausted, and going to bed now.