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.

Finally recovering...plus something that really sucked.

Well, Logan has had a rough couple of months, but I am hopeful he is on the upswing now. He had a stomach bug that took him about 3 weeks to actually shake. He just seemed to feel really bad for the past few months. He has had more headaches, chest pain, fatigue, and just not feeling great. He is no longer taking his medication that was supposed to reduce his headaches. It did nothing to reduce the frequency. He did go a long time without one getting really bad, but the side effects did not balance the amount it seemed to help. We are hopeful that stopping this will be helpful. We also have figured out that he has been teething. This week we noticed three molars and a new front bottom tooth are all emerging from his gums. That also helps explain many of his troubles lately. So, again, we are hopeful that he is finally recovering and will be feeling better a little more consistently. (I started writing this several days ago, so hopefully that will explain why it is like two entries in one).

And, on to the part that sucked... Logan had chemo today, and it was a scheduled spinal tap/chemo day. We arrived at 8, nice and early since he is not allowed to eat before. They accessed his port with no trouble, but it would not give blood return. This has been an ongoing issue over the past several months. Last month they left the clot busting medicine in the port over night and we had to go back the next day. Let me tell you, Logan did not like leaving the needle in over night. He has not had to sleep with it accessed since his first admission almost 3 years ago. So, today, they were able to do his spinal tap, but could not give the regular chemo without knowing for sure that the port was working fine. We waited for his IV to finish, and still nothing. So, they put in the medicine that is supposed to clear it out, but still no results. They were able to fit us in for an appointment in radiology, so they did an x-ray showing that the port is flushing just fine, it will just not give return blood. So, they signed off on it and Logan was able to receive his chemo, and we finally left at 4pm. They said that as long as the port is accepting medications and fluids, it is fine to receive the chemo. Unfortunately this means he will have to have finger pokes for his blood draws from now on. But...he only has 5 months left. Five treatments. Almost there. 

Here he is wearing all of his beads of courage today while at the clinic. He was such a trooper today. No complaints, and he just took everything in stride and was so brave. August 9th cannot come soon enough.

Long overdue

Logan has been staying busy and doing well. He had a great Christmas with family. He really enjoyed seeing Santa, going to the Make A Wish store to shop for his friends and family, and being on break from school.

He also enjoyed decorating and eating cookies:

Shortly after going back to school in January, he LOST HIS FIRST TOOTH! He was so excited that he couldn't wait to tell everyone at school the next day. 

It is really nice to be thinking and talking about normal things like Logan losing his first tooth. It is times like these we can almost forget the daily reality of leukemia that brings medication, headaches, fatigue, and worry over infection/illness. Overall, Logan has been healthy. He has just had a mild cold/cough, which passed quickly. He has started a new medication that is supposed to reduce his headaches by half. We have not noticed that the number of headaches are fewer in number, but he has  not had a really bad headache (nausea, vomiting, screaming in pain) since he started the medicine. He has gotten past most of the bothersome side effects, so hopefully it will continue to work and reduce the headaches. His immune system has been hanging in there, with numbers a little low but not low enough to hold any medications. That is all of the major updates for now. 

Snow Day!

Logan had a busy day yesterday. He had his first snow day from school, and chemo that afternoon. He really enjoyed staying in, watching movies and playing in the snow.

Then, off to chemo. Logan did great as usual. He even asked the nurse if she had poked him yet when she accessed him, because it didn't hurt. His numbers looked great, and are staying in the therapeutic range. He is just going into yet another course of steroids. This is our least favorite part of the month, since he gets so hungry and cranky. We forgot to take a movie with us, so we occupied ourselves writing on the treatment chart on the wall and taking pictures.

The Big catch up (Part 2)

OK, where were we? We had just gone over Light the Night, but I forgot to include how much our team raised. Logan's Avengers raised $2,542! We are so thankful to everyone who donated and also those who came out to support Logan and our family. Then I included pictures from the camping trip to Utah. OK, onward...

We came back home to school and chemo that next week. Logan's numbers were actually right where they like them to be. His ANC was 1450 which is right in the "therapeutic range." Then the kids enjoyed their Fall Festival, and the next week was Halloween! Logan had been looking forward to being Ant Man, and this is what he wore to the Fall Festival at school. Then all of a sudden he wanted to be Hulk. No biggie, it was a costume he already had, and he wore that to trick or treat at the Children's Hospital event. Then he promptly changed his mind back to being Ant Man for the big day. The kids had fun trick or treating with friends, but Logan got tired pretty quick and did not last long. Unfortunately I did not get a picture of him as Hulk, but here are some pics of Ant Man:

That same day, he had his last soccer game and got his trophy. He enjoyed soccer, but did get tired pretty easily and did not like that.

Other than that, Logan has just been a regular kid. He enjoys school, and charms his teachers every day. He has made so many friends, and likes to go to birthday parties. He has chemo next week, so hopefully his numbers will be good.