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.

The big catch up (Part 1)

OK, so it has been over a month since I updated the blog, sorry to all of Logan's followers. I have not been on my computer much at home, so have not updated. Here goes...

At the last update, Logan had just had IV chemo and spinal chemo, and his numbers were pretty low. They were low enough that they stopped all of his oral chemo pills. After that, we had a little scare the next week because he developed a fever and ear/jaw pain. Usually with an ANC below 500 and a fever, it is an automatic trip to the hospital for an admission. Thankfully, our doctor and nurse had us just come into the clinic to check Logan out. Turns out that he had an ear infection, but they took blood cultures just in case. After that, we went in the next week for a blood test to see if he was ready to restart his medications. The ANC was even lower at 200! This was pretty alarming to us all, especially with a camping trip pending. Because we had planned on going camping in Utah for Fall Break, they had us come in the Friday before for a recheck. Thankfully, the numbers were up high enough for us to travel. Yay!

Light the Night: We had a blast at the Leukemia and Lymphoma Society event. First, that day was "Logan day" at the kids' school. Third grade sold Logan's Avengers stickers to the whole school for 25 cents each, and actually raised $550 just from the sticker sales. Unbelievable. This paired with Kindergarten and 3rd grade wearing their shirts, and other supporters wearing superhero shirts was great. When the kids got home from school, we finished packing up and left for the event. Since we got there early, we were able to set up our space with a shade tent, cooler of popsicles, and our sign. Then we could get checked without waiting too long in line. By then, kids and families from the school had started arriving. We were so impressed by the turnout from the school. There were several kids from 3rd grade and also many kids from Logan's kindergarten class. We were just blown away by the turn out from the school including families, several teachers, staff, and the principal. All of this combined with family including NeNe, Grandma and Grandpa made the night so special to Logan and our family.

For Fall break, the kids had a great time camping in Bryce Canyon National Park in Utah:

To be continued...(this is what I get for waiting so long to update)

Still wouldn't know it

Logan has been doing well this week. Just the normal hungry and sometimes needy boy that his usually is the week after chemo when he is on the steroids. He did well at school for the two days after chemo even going to soccer practice after school. I am glad that he had Friday off and got to spend it with NeNe taking it easy.  Logan is really excited to take a week off of taking his medications now that he is done with steroids. Hopefully that will do the trick and his immune system will bounce back. We still cannot tell by how he is acting that his numbers are so low. He seems to be feeling well, and we are so thankful for that.

We had fun on Thursday at the kids' school painting shirts for Logan's Avengers. Third grade all painted and Logan's Kindergarten class came up too. We were also joined by a few other teachers which was really exciting. I then gave a short presentation to Logan's class about his leukemia and treatment. They all got a kick out of seeing a picture of him with a bald head. All of the kids are wearing their shirts to school on Thursday to show their support.

We are really looking forward to Light the Night (and Logan day at school that day as the kids put it). If you are able to donate, we really appreciate any you can give. Here is the link to Logan's team page.

Here is a picture of Logan and his friend Elyse (they are pretty good buddies when their older sisters are playing soccer. Then the bottom picture is of Logan's shirt that we painted at school: