"The Avengers is my life"

This is what I have heard several times over the past week or so from Logan. He is so funny. He even said "The Avengers are at Disneyland." To which I replied, "I hope so, maybe we will get to see them." Then he said, "Yeah, because the Avengers is my life." A little obsessed? Maybe. What's a mom supposed to do when her little man feels bad (last year) and only wants to sit on the couch and watch movies? We had been trying to explain the cancer in terms of bad guys in his blood, and the chemo is the superheros going in and fighting the bad guys. So, we tried to show him that while the fight is often difficult, the good guys win in the end. He has taken this to heart, and superheros (the Avengers in particular) has become his obsession. Thankfully there is plenty of Marvel merchandise out there to use as motivators and gifts. He even has new Ironman arc reactor tattoos, and is very proud.

Anyway, it has been a busy week with some ups and downs. Logan had chemo on Tuesday, and it went really smoothly. No big deal, and his numbers looked great with an ANC of 1400. He did start to feel pretty yucky in the late afternoon/evening though with an upset stomach. He was tired and so I made his medicine and planned on putting him to bed early. Well, that did not go well, and lets just say he did not keep the medicine down and we were both covered when the medicine came back up (food coloring and all). Thankfully it all washed out, but not the most pleasant experience of my life. Just comes with the territory. That night, he did not sleep well and then we did not either. On Wednesday he was still a little under the weather and even fell asleep in my lap at his sister's soccer camp. So that afternoon he took a 3+ hour nap, and it seemed to do the trick. He has really felt better since then and has been playing. He is just super cranky and pitiful being on the steroids, but that is par for the course. Just 2.5 more days of those...

Here is a picture of Logan in the toy room at the clinic, and one of him showing off his arc reactor tattoo:

Very busy weekend

Well, Logan had a fun and eventful weekend. We started out with playing and having fun on Saturday morning/afternoon. Then we went to the Outlaws Lacrosse game. They were having a "cancer night," and we had been offered tickets. We started out the night volunteering for Love Hope Strength and encouraging people to get on the bone marrow registry while handing out bandannas and tattoos which the kids had a great time helping. Then we were invited to go down at half time and compete in a game, and Logan was very excited to be up on the "big TV." Of course he hammed it up for the camera.

Sunday we went to Logan's best friend Weston's birthday party and had a great time with friends at the splash park. Then we had just enough time to rush home, take quick showers, and head back out to an event at Children's Hospital Colorado. It was an event honoring survivors, and he had a great time. The kids walked the red carpet, had their faces painted, met Ana and Elsa from Frozen, and even Spiderman (from Spiderman Logan tells me). We had some snacks, and then all the survivors were presented with mini statue (think Oscar only smaller) with their name on it. Overall a good time, but we were beat by the end of the day.

Logan has been doing very well with his energy and health. He goes in tomorrow for labs and chemo, and we start back on the steroids. (Insert sarcastic "hooray" here) We are still enjoying summer and taking advantage of the sun and nice weather that has not been too hot. We have been swimming, to the park, and playing outside a lot.

Busy, busy

Well, sorry for the long hiatus from posting, but we have had so much going on. After Logan's one year mark, our daughter had her dance recital, and then we went on vacation. This was a trip that is similar to the one that was cancelled last year due to Logan's diagnosis. We had planned on going on a road trip with extended family, but obviously that was not in the cards. So, we did it this year just to different places. Off we went to Moab, Durango and Gunnison with our family including Logan's great grandparents, Nene, and great Aunt Vickie. It was a great time and Logan did well. We still notice that he gets tired easily when hiking or doing much walking, but he is coming along. We are going to try and stay really active this summer to improve this before our big Vail Rocks hike (more details on that soon) and before our Wish trip to Disneyland in October.

Health-wise, Logan has been doing well. He is taking his medicine with little trouble, and is feeling good. His energy level is generally pretty good. Of course, he has more energy for his favorite things like going to the pool. We have a week before we go back for chemo and start his steroid course again, so we are going to enjoy it. Our plan for this summer includes a lot of going to the pool, park, playing and just having fun and being normal. I cherish this so much after the experience of last summer. I also wanted to give a shout out to my friend Jordana for celebrating 10 years of remission after losing an eye to cancer. It may have taken an eye, but not her sense of humor (see the eyeball cakes I made for her party below).

One year later

One year ago was the worst day I can think of. We hear the words that no parent should ever hear: "your child has cancer." Of course it did not start out like that. It started with an array of random symptoms that we could no longer ignore, so I called the doctor and took him in. I have no idea if she truly expected to find cancer, but she did nothing to alarm us and ran some blood tests. Later that evening, as we were cooking dinner, I received a call from the doctor that would change our lives. She was telling me of "abnormal results" in the tests and how she hated to talk about this over the phone, but none of it was computing for me since I did not read blood tests for a living. When I asked what that could mean, she told me "it could mean leukemia." She sent us to the main Children's Hospital with the hope that they would rerun the tests and find out it was a mistake. Obviously, it was not a mistake.

So, here we are one year later. Four IVs in three days later. Two bone marrow biopsies later. One surgery to insert his port later. 134 doses of steroids later. 14 spinal taps with chemo injected into his spinal fluid later. 8 shots of Cytarabine chemo (that I gave him) later. 39 doses of chemo in this port (5 different chemo drugs) later. 177 doses of oral chemo (3 different drugs) later. Uncounted doses of oral medications to counteract all the side effects of all of the above later. Countless hours of lost sleep and worry later.

But that does not define our year and our fight. Logan's resilience is astounding. He is a warrior who is thriving despite his circumstances. We are thankful for remission, thankful for No Evidence of Disease. I have said it before, cancer sucks. It is not all cute kids with bald heads. Though Logan was pretty cute when he was bald. It is rough, and many do not make it. There are parents out there who grieve every day. So, here is my message: celebrate what you have. Celebrate a healthy family. Celebrate a normal day. We did/are doing that today. We went to the pool, ran errands, and are having a cookout with friends today. All things that we could not do a year ago.  What a difference a year makes. Be thankful for life and celebrate.

Thinking of tomorrow

Well, unlike last month, Logan is feeling the full effects of steroid hunger this time around. He finished his last dose yesterday morning, and his cheeks are a little rounder and his belly too. Overall, he is not too cranky, but does get upset easier. Other than that, just plugging along. The clinic informed us that if we really wanted, we could get the methotrexate in liquid form from the pharmacy at the main Children's Hospital. We would have to fill it every other week, because it looses its efficacy. And we would either have to drive up to get it (about 30-40 minutes without traffic), or pay for shipping ($13 every two weeks). With all that said, he is taking it ok, so we will stay the current course.

I am also doing OK. It is strange how memories (flashbacks?) keep flooding my thoughts. It is hard to think about those rough first few days(months), and what all he went through. This mostly comes to me when I try to sleep, and the days are easier. We are trying to "celebrate" normalcy, and just be happy in everyday life. Thankful for all the things we can do this year that we could not do last year. Going to the pool, running to the store, and just having the energy to play. I know my emotions are close to the surface, because it does not take much for me to choke up a little. No major crying jags, but a kind act from a friend just makes me feel so grateful for what we have. My little man is not just surviving but he is thriving! Here he is blowing you a kiss: