Just a little update

Hi all, Logan has been doing well. His runny nose came back this week, but he seems to be feeling fine. We are still battling some right eye drainage, but he has  new drops that should help. Other than that? We are doing great. Logan is playing and having fun and doing his normal Logan things. We are still floating from our experience last Friday so I have included a picture below. It has been strange to not go into the clinic so often, but we are adjusting. He is taking his medicine really well with very few hassles. Really, the hardest part is just getting him to finish eating by 6:15 at the latest. We were given the OK that an hour is fine, two is better when it comes to eating before taking his medicine. We try, but he eats so slow lately. Anyway, we go into the clinic on Monday for labs and then Tuesday for chemo. He starts steroids on Tuesday for 5 days, so wish us luck!

Blown away

I do not know what I expected out of the basketball game on Friday night, but let's just say it was so much more than anything I could have expected. When we arrived at the school, we walked in toward the gym and the first thing we noticed was a giant poster with Logan's picture:

We wanted to get his picture with it, so had him go over by it, and before we knew it students were coming up exclaiming "It's Logan!" The leadership teacher came over quickly and shielded us from many of the students, she was telling us that all the students were so excited about Logan being there. We were introduced to our student guides Nick (pictured with Logan above) and Kaela. As it turns out, Nick had the same leukemia when he was about Logan's age. It was very encouraging so see a strong healthy young man who had been through the same thing. We were all given t-shirts that are pretty cool:

We took some pictures, met a few more people including Rocky from the Denver Nuggets and went into the game. We have so many pictures from the evening that I will be posting them here for awhile just to show it all. During the first half, Logan was dancing and having fun. We had many people come up to us including Nick's mom. I have said before that it is nice to meet people who know exactly what you are going through. They know the emotions, process, etc., and it was good to see she survived with a great attitude and is willing to pay it forward by supporting others. She gave me her email and phone number, and I know I will be talking with her in the future.

At half-time of the game, they did a presentation introducing Logan including talking a little about Nick (many did not know of his leukemia before) and showed a large poster of him at Logan's age in a Superman costume. It was amazing to see the two posters together of little guys with bald heads dressed as Superman. Apparently when Nick's mom saw the picture of Logan, she went back and found one of Nick that is so similar. They then did what they call a "Miracle Minute" which is where they just have students in the aisles collecting people's spare change (they collected $1100 in that one minute!). During that time, they were lifting Logan up and having him shoot baskets. It was a little hard for Nick to lift Logan up high enough, so a former Nuggets player who was there with Rocky stepped in. He was definitely tall enough!

The whole experience was pretty amazing, and this was just a "lead up" event. The big assembly at the school and another event are next month. We are so grateful and humbled for the support and enthusiasm of the students, teachers, and staff at Cherokee Trail High School for Logan and Make A Wish. It is hard not to have a positive outlook when you are surrounded by such love. We were truly blown away.

Doing better

Thank you to everyone for sending positive thoughts and words my way yesterday. As I have said, the emotions of this ride are extreme and sometimes they just hit me harder than others. This blog is here to let people know how Logan is doing, but it is also a bit of a journal for me. It helps me process what is going on and purge the stress. It is also a way for me to ask for help, even if it is just a few kind words, which is hard for me still. So, Thank You for all the kind words and thoughts, they really lifted me up.

We have a couple of exciting things coming up. Logan has been assigned to Cherokee Trail High School for Make a Wish fundraising. We have been invited to a special basketball game, and they are going to introduce our family at half-time. Logan is even going to be lifted up to shoot a basket, so we have been talking that up to him so he is excited instead of scared/intimidated. I will be sure to take pictures for everyone.

We want to send out a big Thank You to Angela and Gifts from Heaven for sending the box of goodies for Logan and the family. It was a bright spot on a busy Tuesday evening.

Here is a picture of the kids playing outside on the beautiful day yesterday (before the crazy thunder/snow/hail/rain storm hit last night).

Numbers looking good

We went in for labs on Monday, and Logan's numbers are looking good. His ANC is 1025 which means his immune system is bouncing back, and he is not as susceptible to getting sick. His hemoglobin and platelets are great numbers as well, so we are all very pleased. He is pretty energetic and is playing like normal. We have been enjoying the nice weather outside, and even got out to ride bikes a couple of times (see below).

Things are settling into a routine and he is taking his medicine pretty well. So...why am I not sleeping? Why am I still so worried all the time? Why do I feel so sad? I know many of you have noticed I have my ups and downs, and I cycle through them periodically. I have a few "my kid has cancer" days, and I am overwhelmed with all the emotions and worries that go with it. Then I move on, do what needs to be done, and figuratively smack myself in the face and say "buck up, your kids need you." It just gets to me sometimes, and I guess right now is one of those times. I feel like I am failing in so many ways: as a mother, a wife, a daughter, everything. I feel like I could be doing better, just cannot muster the energy (or find the time) right now to do it. I am cranky with the kids, and they do not deserve it. They deserve my best, so I am going to somehow pull it out. I can do this.

Nice weekend

Logan has had a good weekend so far, and we still have tomorrow off for the holiday. We had a nice Valentine's day, and Logan's gift is pictured below. He has been running around being Captain America all weekend. Saturday we had a relaxing day and only went grocery shopping. We were very excited to go the new Trader Joe's that just opened this weekend. It has been over 6 years since we moved to Colorado from California and have missed it. One of our favorite foods from there is the hummus sampler with four different flavors, and it was a huge hit with Logan. He was dipping everything in it from chips, crackers to his hot dog!

Today we took the kids to see the Lego Movie, and they had a great time watching and eating popcorn. I am not sure where Logan put all that popcorn, but he just kept eating and eating. His appetite has been really good lately and sometimes I wonder if he will ever get full. Friday morning for breakfast he wanted a sandwich (and he ate it all), he ate some of his Daddy's cereal as usual, he ate his own bowl of cereal, a cheese stick, and a bag of fruit snacks. At that point I think the only reason he stopped eating was that I dropped him off at daycare. He is still doing well with taking his medicine, though he does not like the eye drops. His eye is better, but still has some discharge so I will have them look at it at the clinic when we go for labs tomorrow. They are just checking to see how his numbers look.

Like a champ

Logan has been having a good week. He is over his cold, and has only had some eye irritation that we are giving him drops for and it is clearing up nicely. Not sure what happened there, it was watery when he was sick and then turned into more so they gave us drops to take care of it. He has been taking his medicine like a champ, and we are very proud of how he is doing. He does not put up a fight to take his meds, though he still tells me what he does not like (which is most of it). Thankfully we are done with the steroids, and he came off of them well with no issues. He took his first dose of Methotrexate (10.5 pills) last night because we forgot on Tuesday. Thankfully it is just once a week, and they said there was some flexibility as long as he gets it in. Ten and a half pills was a lot to crush, and it may be a bit of trial and error figuring out the best way to crush and give it to him. I normally crush his pills inside the syringe so that there is little to no waste of the medication, but that was too many to do that so I had to do it in between two spoons. then I dissolved it in a little cup and tried sucking it up into the syringe. That did not work very well and neither did pouring it into the back of the syringe and fitting the plunger inside. Like I said, trial and error. Maybe better in small batches? We will see.

Logan is ready for Valentine's day and is excited about handing out goodies to his friends. He picked out Hot Wheels cars for the boys and pink and white rubber duckies for the girls as well as some candy. And we picked up some Valentine coupons for a free donut at Krispy Kreme last weekend so we included those. He also helped me pick out the gift for Alexis which is a heart necklace. His gift is a surprise, but let's just say he will be an even better dressed super hero. Pictures to come this weekend. Happy Valentine's day everyone from Logan!

He has not been letting me take pictures of him the past couple of days, but these quotes made me think of him. First just for being him:

And second, because it is Valentine's and just as a general reminder:

Busy weekend

Logan has been doing very well this week, and we just finished a busy weekend. Overall, he has done nicely with taking his medications with very little complaints. It has been difficult for him to get used to not being able to have a snack after dinner or drink milk, but he is taking it all in stride. We need to get more diligent in making sure there is no food laying around. Tonight, he saw a package of fruit snacks that he had not finished earlier in the day. He actually asked if he could have them (which is good), but then had a little breakdown when he could not eat them. Poor little man.

Two days ago, at Logan's big sister's school, they had "Donuts with Dad." Let me tell you, Logan was pretty jealous, so we promised to go for donuts this weekend. So, today we went to Krispy Kreme for breakfast. The kids love watching the machine make the donuts, especially when something goes haywire. They had fun watching some get stuck and the icing waterfall pour out onto the floor at one point, of which they tried to get the employees attention with an emphatic "there's a problem here!" Then later today we went to the fundraiser for Beads of Courage and bone marrow drive for Love Hope Strength. Logan wore his beads and we saw many friends. It was great to see Brenda and her family, Delaney and her family, and Daelyn as well as meeting many new friends. Logan had a great time showing off his beads and bouncing around. Here are some pictures from our busy day:

This week should be uneventful as far as Logan's health goes. No clinic visits scheduled until next week on the 17th, and that is just for a lab check. He is free to just have a normal week.

So far, so good

Logan had a really good day yesterday after chemo. He came home, ate lunch, took a nap and slept for about 1.5 hours. After that, we went to pick up his sister from school and take her to dance class. I was ever vigilant watching for signs of him not feeling well, but he was doing great and eating/drinking. One new thing we tried yesterday was giving him some caffeine per the doctor's suggestion. What good mother does not give their three year old Pepsi? Anyway, it was a treat for him and he drank a few ounces. I don't know if it was the caffeine or not, but he did not really get sick yesterday or today. So, possibly getting sick on previous spinal chemo days/weeks was related to headaches but he could not really tell us. Either way, we will go with it and keep it up next time. But the best part about that sentence is that he does not have another spinal for 3 months! Party! At least that is what it feels like.

Logan took his medicines fine last night, but did make it a point to tell me "I don't like that one." He was referring to the steroids, and I wanted to say "Me either, Dude, me either." It is pretty bitter when he takes it, so I have him take a drink immediately. Thankfully that one is only 5 days. But he was as super trooper, and didn't make a big stink about it. What was a challenge for him though is that he couldn't eat anything after dinner. He has turned into a bit of a grazer, and wants to eat after he leaves the table. But, unfortunately, the new rule is that he cannot eat anything after dinner or have any more milk (which has a bigger impact on him). That way, it is as long as possible before bed time when he takes his medicine.

I wanted to say thank you to everyone for not weighing in on our decision to give consent for Logan to be in the study. Making that decision was hard enough with the stress of possible implications, etc. that I could feel the stress as a physical feeling yesterday morning. We are doing what we feel is best, and appreciate that no one felt compelled to weigh in on one side or another. Not that I was expecting a lot of judgmental comments or anything, I just want everyone to know I couldn't take it. Our followers are so supportive and we appreciate all of the well wishes, prayers, positive thoughts, posts, reposts, and everything else. Much love to you all. Looking forward: Logan is attending a Beads of Courage event put on by my friend's daughter this weekend. It is her senior project and she is helping to raise money for Beads of Courage. Logan will be there with his beads on Sunday. Here is the link if anyone local wants to join us.

Maintenance

Well, Logan started Maintenance today. It was a long morning at the clinic, but things went well overall. Since the beginning, Logan has been "on study" with the research group that our doctor is associated with. Up until now, that meant nothing to us as the treatment is the same on or off study. Maintenance is what they are actually studying. Now, the good news is that the "control" group still gets the standard treatment, so it is not like he could be placed in a group that gets nothing and puts him at a higher risk of relapse. So their are four "arms" of the study. A is the standard treatment (monthly cycles), B is the standard with one medication at a higher dose, C is standard but at an every 3 month frequency, and D is every three months with the higher dose. Now, for some reason, they would not randomize him until we walked into the door this morning. At which point a huge wave of anxiety and emotion came over me. Was I doing the right thing? What is going to happen? I know the doctor assured us that they would not have any of these arms if they did not think they were a good treatment option, but still I could barely hold it together. And the verdict is...Arm B. So, Logan will have monthly chemo at the clinic, spinal chemo every three months, oral steroids for 5 days every month, oral 6MP every day, and oral Methotrexate at a higher dose once a week. How do I feel about this? Well, one one hand I am relieved that he will be getting something every month as is standard. And the nurses told us that many kids go up to or close to the higher dose anyway to stay in a "therapeutic range." On the other hand, it would have been nice to only take steroids every three months. All of these mixed feelings made it impossible for me to wish for a certain arm. So, now we know, but we do wish we wouldn't have had to wait until this morning to find out.

So, we arrived 10 minutes before his 8am appointment, and then waited around until after 9:30 for them to actually start everything because they were waiting for the pharmacy to get the meds up to the clinic. They could not order the meds until he was randomized even though no doses or any treatments today would have been different. Oh well, it gave Eric time to drop Alexis off at school and then get there before they started anything. Accessing his port went very smoothly, and he didn't get too sick with it. He did fine with the spinal, just yelling at them for curling him tightly into a ball for the procedure. I am so glad they are quick with that, and we only have to be out of the room for a few minutes. Unfortunately we can still hear him yell at them through the door/walls. We kept him laying down for a little over an hour afterward and they gave him fluids. This usually helps him not be as sick. We are hoping that it will not hit him harder since he still has a cold, but will just wait and see. Finally they gave him his Vincristine in the port, flushed (which did make him sick this time), deaccessed him and we were on our way. We came home, had some lunch, and he was getting a little rowdy. Now, often I notice that he tends to get more rambunctious when he is tired but afraid he might fall asleep. So, I gave him a choice: go and lay down in a bed for a nap, or lay on the couch and I would leave the movie on. Of course he chose the couch, but he was fast asleep in less than 5 minutes. And, here we are. I am updating the blog, while he rests. Hopefully I can get a chance to fill out a bunch of paperwork for him (long story there) and to get a little work done too. Hopefully things will go smoothly tonight and the rest of the week.

Slowly getting better

Logan still has a runny nose, but it seems to be slightly less today than it has been for the past week. Hopefully this means that he is on the mend from this cold. We went into the clinic today for labs to see if he starts Maintenance tomorrow, and...he passed (barely). To go on to the next phase, his ANC needed to be at or above 750, and it was 830. We were sweating it a little because of the cold. Sometimes that keeps his numbers low, but thankfully we had an extra few days because we changed the clinic schedule. We will know more details tomorrow, but we do know that there will be oral chemo every night, an extra oral chemo once a week, and steroids. All that starts tomorrow. Yikes! We are going from meds only on the weekend to several pills each day at least for the first week. It will be up and down, but I think he will do just fine. OK, maybe with a few bribes that will be true. I am definitely not above bribing.

Positive thoughts are welcome since tomorrow at 8 am Logan has a spinal chemo with sedation and he starts the steroids tomorrow. Here is a picture of him clowning around while we tried to watch the Superbowl: