Lots of exciting stuff (part 2) You really need to read this one!

OK, let's continue this train of positivity. When I left off, I talked about Logan's party and what a great time he had despite having broken his arm. One of the heroes at the party, said that she had a gift on the way for Logan, but it had not arrived before the party. Well, a week later, she let us know that it was here. She brought over a couple of signed prints from Bob Layton! He is the artist behind Iron Man, and the prints were pretty cool.

 

Logan then soon received another amazing gift. He received a package from Marvel Studios that included MANY movie posters, a hat and some books. It was pretty amazing and has made Logan love his room even more. They heard about Logan through a video that our friend Melanie posted in hopes to get Robert Downey Jr to Logan's end of chemo party.

 

Well, he didn't make it to the party, which is completely OK. But a few weeks later, we did hear from his team and Logan received a very special FaceTime call from Tony Stark himself.

It blew us away and we were all so excited. It was such an amazing and memorable experience, and we will treasure that time for the rest of our lives. Everyone that we emailed with, spoke to, etc. was so kind and we were so impressed. Truly a class act. Also thanks so much to Melanie for coming up with the idea and seeing it through. We cannot thank you enough!

But wait, there's more... Logan was recently selected as the Boy of the Year for the Rocky Mountain chapter of the Leukemia and Lymphoma Society. This is such a great honor. He will be one of the faces for a huge fundraising campaign: The Man and Woman of the Year. We will be working toward helping to raise funds that will go to research a cure for blood cancers. And with that, we are off to Light the Night tomorrow. Our team is still trying to raise some last minute funds, so please go to our page and take a look. Even $5 helps the fight against cancers like Logan had. Thanks to all of Logan's fans, and also thanks for sticking with it and reading this far.

Lot's of exciting stuff (part 1)

OK, I know I always say this, but sorry for the long time in between updates. Logan has been busy living life and having a ball. Since the last post, Logan had surgery to remove his port. Of course with our little man, things did not go exactly as planned. Since he had the port in for so long, it had become adhered to his vein wall. So, when the surgeon tried to remove it, part of it separated and did not come out, instead staying lodged inside of his vein. So, Logan had to be transported up to the main Children's hospital for interventional radiology to perform a second surgery and remove the remaining piece. By then it was pretty late, so we stayed the night. They put us on the oncology floor, which we had not been on for over three years. It brought back some strong emotions and memories, but we made it through. Thankfully we were able to go home the next day, and Logan rested and recovered.

After all that excitement, we geared up for Logan's end of chemo party. We were ready to celebrate! The party included so much fun, and was a community effort. We had several superheroes volunteer their time from the Colorado branch of Heroes Alliance. My friend Michelle painted faces, and other friends pitched in to help too. Thanks Candice! Everyone brought food to share, and Pizza Hut even donated a couple extra pizzas. My friend Daelyn and her business Flashes of Fun gave us a huge discount on her awesome selfie station, and the pictures were amazing! I definitely recommend them to add fun and great pictures to any event you plan.

The superheroes were so great. They gave Logan some gifts and hung out for most of the afternoon. It just made the afternoon so special and memorable. So many of Logan's friends and classmates came. There were also several teachers from his school (current, retired, and ones with new jobs) and the assistant principal. His oncologist and several nurses, etc. from the clinic came. We very much appreciate the sense of community and support from those who came and those who wanted to come but just couldn't make it. One more memorable moment of the party was when Logan fell from the monkey bars and broke his arm. Because, of course. Never a dull moment with our superhero. Thankfully now his arm is healed and the cast is off.

This feels amazing!!!

Well, we have been on a countdown for a long time now, and guess what...LOGAN TOOK HIS LAST CHEMO MEDS LAST NIGHT!!!!!!! Can you tell I'm excited? We have been so wrapped up in the end of summer and his countdown with a lot of lasts lately that I have not updated. Sorry about that. Last week, Logan had his final IV chemo at the clinic:

It was pretty exciting and we were all there, and taking lots of pics:

Even before that we had started the final countdown: 

And just like that, he took his last chemo pills. I posted a couple of videos on his Facebook page including him taking the last pill and his personal version of the mic drop that I find hilarious. It all seems pretty unreal, and we have had some crazy emotions over the past few weeks. Many happy tears, and cheers for our own personal Avenger. He has taught us so much about perseverance, strength and bravery over the past 3 years. 

We just have a few more hurdles ahead. Logan has surgery to get his port out on Monday, and then his celebration is that weekend. We are excited and ready. One last pic of my personal hero:

Count down is getting shorter

Logan has had a busy summer so far. He has already had chemo twice, took a trip to visit family in Oklahoma, had a fun 4th of July, and a busy recent week including his sister's birthday party, soccer camp and a visit from Nene and Papa. Overall he has been having a blast!

Logan's chemo on July 5th was the second to last time he has an IV chemo. It went smoothly, though he was tired and fell asleep during his IV. Of course, he was up late celebrating with fireworks the night before. We are looking forward to the VERY LAST chemo next month. Then a week of medications after that and he is DONE. 26 more days...

Here he is tackling a huge peanut butter, banana and (Avenger) waffle sandwich:

 Showing off his Avenger's henna tatoo:

 Passed out at 10am the day after his sister's birthday sleepover:

 Scoping out things for his Birthday list:

Three years later...

Well, it has been three years to the day that Logan was diagnosed with leukemia. Three years since our lives were changed forever. There are so many things that have happened over the past three years. Some good, some bad, some just different. I have been wondering why I have been in a bit of a funk lately, and I think part of it was this anniversary of sorts bearing down upon us. I write that and it seems so dramatic. It could be a much worse anniversary, given the possibilities that a cancer diagnosis brings. But, here we are. So much to be thankful for, yet still many things to mourn that are lost.

I mourn the loss of: Logan's carefree nature, his endless energy, his easy giggle, his adventurous nature, his complete confidence, part of his childhood and personality that has been forever changed through this situation. He has been forced to grow up in so many ways so quickly, that we will never know how he would have been different. I also mourn the loss of our naivete. It was so easy to think something like this was rare or could never happen to our family. Well, clearly that line of thinking is wrong. So. Very. Wrong.

I am thankful for: Logan's continued joy in life, his loving nature, the fact that he tells me that I am pretty at least 10 times a day, his curiosity, his tenacity, his perseverance, his endless strength (of which he gives me so much inspiration to carry on in tough times), the people we have met throughout this journey, the perspective that this situation has given us, Logan's laugh, and so much more.

This has fundamentally changed who we are and how we react to people, situations and life in general. I go back to that first post, The Worst Day of Our Lives, and I cannot even read the first sentence without crying. It is so hard to think back to the thoughts and emotions of that time. This time of year does that to me though. I start thinking about the days leading up to his diagnosis and the days following, and it gets me every year. So, since it is so hard to look back, we are looking ahead (denial much?). He ended the school year with a bang, and graduated Kindergarten. Unfortunately he had to say goodbye to his teacher Ms. Howard and principal Mrs. Pytlinski as they will not be returning, which made us all very sad. Logan had his last spinal tap with chemo this week, and only has 2 more IV chemo treatments to go. As for all chemo meds, only 67 more days to go...

 Happy Birthday Dad:

 Last day of school:

 The proud graduate (hard to tell that he has an Iron Man belt on):

 Had to see the new Captain America movie. Team Iron Man of course:

 My Mother's Day breakfast in bed:

 Muffins with Mom at school:

Quick chemo day?

Over the past few months, Logan's chemo visits have been less than smooth. One issue is an uncooperative port that will accept meds, but not give blood return. Another issue is dry/cracked/calloused fingertips which make doing finger pokes difficult (hence getting poked 3 times last month before we had a decent sample for labs). All of this has combined to make us spend significantly more time at the clinic than is "normal."

But, today was a new day. Even though Logan's appointment was a little later than usual, I was optimistic. When we arrived they did his blood draw from the arm, and then took him back to the room. The nurse had his IV antibiotic ready, accessed him right away and started the IV. He was checked out and we had his lab results pretty quickly. His ANC was 1900, so they increased another of his medications. We have now moved back up to 75% of his typical dose which is still only half of what he was taking before he went off of the meds for a week since he was at 150% of the typical dose for his size. Once the IV was finished, they gave Logan his Vincristine (IV chemo) and he was done. We were actually in and out in just a little over an hour and a half. We felt like we were missing something since it had not gone this well in a long time. Now, we are on the countdown. Three more months, 3 more IV chemo visits including one last spinal tap at the end of this month. 98 days left!

Here are some pictures of Logan recently. First at the Children's Hospital Celebration of Life event:

Goofing off:

 He and Iron Man are "bros"

 With his favorite Colorado Rapid soccer player Badji after a game:

 And just hanging out with his sister at a fun birthday party on a snowy day:

Cycling up and down

Every time Logan starts to feel better, he gets knocked down again. I am over it. Last month they started him on Zantac to help with the reflux, chest pain and general ickyness. Once the steroids were over, it seemed to really help. I actually said a few times last month that he had felt better than he had in months. I think this was due to a couple of factors. The Zantac was helping a lot, and he went off the meds because he counts were low again. It is so frustrating to go in for a check to see how he is feeling, I tell them he is feeling good for a change, and then he counts are so low that he has to stop the meds. He really enjoyed stopping the medications. We still had him taking the Zantac, but no chemo pills which made him super happy each evening. In addition to that, I got a glimpse of what life without chemo will be like. One word: Amazing. I cannot wait until this is real life for Logan. It was a nice break from him feeling bad, but is also like a cruel tease. The "bright side" to having to go off the meds a second time is that Logan started back on a lower dose. A significantly lower dose than before. He was on 150% dosing due to counts and them slowly increasing the meds. Now he is on 50% dosing. It feels like he is taking so little compared to what we were used to taking each night. The upside is that he is still feeling somewhat better than before.

We went in for chemo last week, and he counts were low, but not low enough to stop the meds again. They are not ready to increase the dosage yet due to these low counts. This is perfectly fine with us for now, we are just worried that he may get sick. Lots of hand washing around here. It just seems there are cumulative effects of the meds, and the effects just keep getting worse and worse. Even a little bit now impacts his counts. The typical side effects seem more extreme the closer we get to the end. Just like my anxiety about it all. I know that it is protocol for them to go off meds for low counts, and start at lower doses. But in my mind, I am asking: "What does this do for his long term outlook?" I know I cannot control it, and I need to let go of the worry. But I think it will remain with me for the rest of my life. I am a changed person, and not all of it is good. All I can do is try to be positive and strong for my little man. He is still as charming as ever.