Logan's Avengers

Greetings! Well, Logan has been doing pretty well since his chemo last week. He has been tired and napped several days, but overall did well. The steroids definitely made him tired/cranky/needy, but that is getting a little better now that he is done with those for this month. We have been staying pretty busy this summer, and I have been trying to keep the kids active for a few reasons: 1. It is just nice to be "normal" and do fun things for the summer. 2. We need Logan to have more stamina for his Make a Wish trip to Disney Land in October. And...3. We want him to be able to do as much of the hike as possible next month at Vail Rocks! Vail Rocks is an event/fundraiser for the Love Hope Strength foundation who works hard to get people on the bone marrow registry to save lives. It is such an important cause, and we support it strongly. We have started a team to honor Logan called "Logan's Avengers." (Note: I also happened to rename the blog with this name, as the other one always bugged me a little.) Here is Logan's Avengers Team page. If at all possible, we would love for you to visit it, donate if you can, or send it out to your friends. Even if all we do is increase awareness, then we will achieve our goal. If you cannot support this cause with money, please consider going to Delete Blood Cancer and requesting a swab kit to become a marrow donor. It is a quick cheek swab (please check online to make sure you are eligible first) that you send in with your information. If you are matched with someone, in most cases they take the cells from your blood (not your bone, though they do this in some cases) and it is a relatively easy procedure. You could save some one's life!

This picture is from this last weekend when the kids were able to spend some time playing with their cousin Emma. They had been looking forward to this visit for so long, and really enjoyed seeing her in person (not just on the computer an in pictures). 

Smooth chemo day

Logan made it through yesterday like the champ that he truly is. He knew that he was going to have to wait to eat breakfast until after the spinal tap, so he was fine with the morning routine. Of course, we always hope that he will sleep late on these days, and...he always wakes up earlier than usual. He was still understanding of waiting to eat, and he picked out some food to take. Once at the clinic, they checked him in and we learned he had grown an inch in the last month, but put on no weight. No wonder he was looking thinner and was having a hard time keeping his swim suit from falling down!

They accessed Bob and drew blood for his labs, and gave him a quick check-up. Everything looks good, and Logan seems pretty healthy. Then they were ready to do Logan's spinal tap and give his chemo into the spinal fluid. While Logan was in, we went and warmed up the breakfast he had chosen. They gave him some extra sedation this time because he was feisty last time and seemed to remember more. Actually, he has told us repeatedly that he does not want to be "made into a ball." Hopefully he will not have as much of a memory of it this time. After the spinal chemo, he always gets an IV and stays laying down for about an hour. He actually did better this time, and pretty much ate the entire time. He ate almost all of a sausage, egg and cheese breakfast sandwich, and he ate 6 sausage links. We also spoke to a dietitian while there, and they are recommending that we limit his milk intake. Well, that should be a challenge, but we will try. Then they gave him the IV Vincristine and took the needle out of Bob. Off to home we go!

Once home, Logan seemed to be his normal self. Maybe with a little less energy. We gave him some Pepsi for the caffeine to ward off any potential headaches that are often caused by the spinal taps. We watched a movie, ate lunch, and took it easy. We played on the slip and slide and fort in the evening, and then went to bed a little early after his first steroid dose. Overall, one of the better spinal tap days he has had during his treatment. These pictures are from our fun day at the zoo on Monday with Candice, Weston and Curran:

Sometimes...

I wrote this last week, but never finished and posted it:

Sometimes this Sucks. Sometimes the lyrics of the song make you cry such as this one titled Bastille by Pompeii: 

I was left to my own devices

Many days fell away with nothing to show

And the walls kept tumbling down
In the city that we love
Great clouds roll over the hills
Bringing darkness from above

But if you close your eyes,
Does it almost feel like
Nothing changed at all?
And if you close your eyes,
Does it almost feel like
You've been here before?
How am I gonna be an optimist about this?
How am I gonna be an optimist about this?

I was talking to Logan and preparing him for the next chemo so he knows what to expect, and that song came on. Sometimes it just comes crashing into you that your son has cancer, and you can't just take it all away. Sometimes you just have to sit and cry through your daughter's soccer camp when the emotions sneak up on you. Thankfully that one was followed by A Beautiful Day by U2, and it brought it all back onto the positive side. Sometimes your son says you're the best mom in the whole wide world, and that is exactly what you need.

We go in tomorrow (Tuesday) for IV chemo in his port and chemo into his spinal fluid. We also start steroids again. The bright side is that he won't have to take the Methotrexate this week because of the spinal chemo. Small celebrations. Logan told me he hates Walgreens as we drove by one a couple of weeks ago. Why would a three year old hate a store you might ask? Well, I asked him and this was his answer: "because I don't like medicine." Smart kid I've got here. Wish us smooth sailing tomorrow morning. I have included a couple of pictures of Logan and one of the finished Olaf cake. I worked pretty hard on it, so wanted to show it off. 

Why I overdo it

Why am I stressing about Alexis' birthday? It will be fine. She will have fun. Everyone will have fun. Yet I stress and overdo it to make sure she feels special. I feel like she takes a backseat to Logan's illness, treatments, schedule, etc. I hate to deny her something based solely because of Logan and the accompanying issues that goes along with a sibling with cancer. Will I ever get over this mommy guilt? I want her to have a normal childhood and get to do all the normal things. This summer, we are more able to do those things including going to the pool and having fun. We can have her birthday party here at home like usual instead of having to go somewhere else. This is progress. But, it seems I am worried about making it perfect. Which it will never be. And that is OK (or so I try and convince myself). I am working on making her cake amazing. Now, would I do this anyway? Probably. Baking is my hobby, and I love it. I also love trying to make the cakes look really cool and fun. I love seeing my kids' faces light up when I have made their favorite character in frosting. But I am pushing myself even farther this year. Now, I am not creative (in the least), but I can Pinterest with the best of them and recreate things I see. I can follow instructions like a champ. Here is what I have so far:

I also have two rounded layer cakes covered in chocolate frosting and awaiting their fondant covering. Hopefully all will be fine. My biggest fear is that the head is too heavy and will crash through the whole cake. Fingers crossed. I could always pretend I meant to make it look like the part when his head is separate from his body, right?

Anyway, Logan is still awaiting his "regular" Ironman cake. When I was baking the cake, he asked "where is the regular one?" Thankfully I have some vanilla ice cream in the freezer for him if needed. He is doing well, and excited to have family staying with us. He loves showing off for Nene, Pappa, Grandma and Grandpa.  

Little Ironman

Logan's energy seems to be up lately. He has not been falling asleep as much during "quiet time" in the afternoons, and he has also been staying up playing in his bed after we tuck him in for the night. Not sure why, but he just seems to have more energy. This seems strange since he has not been eating much, but we will take it. Our eating routine has become a little easier, and Logan has not been asking to eat (much) after the cut off time. He understands about the medicine, and usually is OK with it. We try and eat an early dinner so that there is time for a treat. Only vanilla ice cream or "regular" as he puts it, no chocolate. He likes regular or white milk, so to him the absence of chocolate makes it "regular." This makes vanilla ice cream, white or vanilla cake, etc. all "regular." He requests his birthday cake be "regular cake," and apparently I am going to make it tomorrow. This may be a challenge since I am still deeply engrossed in making an Olaf cake for Alexis' birthday on Saturday.

Last night we went to a community ice cream social and enjoyed some fun activities such as listening to music, face painting and watching a demonstration by the local fire department. It was pretty cool, and Logan was engrossed in watching the firemen as that is his current aspiration when he grows up. All in all, it was a pretty nice night. We are looking forward to family arriving today and a backyard full of screaming kids on Saturday.

My birthday?

Logan has been doing well lately. He made it through his steroid week, and the week after. His appetite has definitely decreased over the past few days, and he even skips a few meals. We are not excited about that, but cannot force him to eat. I don't want eating to be a struggle, but do wish it wasn't one extreme or the other. He is either eating everything he can get his hands on or eating practically nothing. This seems to be the cycle most months: eat everything on the steroid week and for about 4-5 days after those are finished, then eating very little for about a week, then back to normal for about a week. Of course this has had exceptions. The month after his last spinal chemo, he didn't seem to eat much the whole month. Then the month after that, he never stopped eating. Now this month, he is back to the "typical" cycle. He goes in again for a spinal chemo in a couple of weeks.

Otherwise, things are good with the exception of a few headaches. Logan seems to get headaches with weather/barometric pressure changes ever since he started treatment last year. Not sure if it has to do with the spinal taps or what, but it does seem to be correlated to weather fronts coming through. The kids had a great time on Independence Day with the parade, block party and fireworks (see pictures below).

We are gearing up for Alexis' birthday on Saturday. This is exciting for the whole family, but is also a little confusing for Logan. His friend just had a birthday and party, and now his sister. Logan knows that his birthday is in August and not too far away, but thinks that we should be preparing for his birthday any day now. He has already requested that I make cinnamon rolls for breakfast on his birthday. And of course, he asks often, "are you making cinnamon rolls for my birthday today?" I did buy some mini cinnamon rolls at Costco last week, which seems to have satisfied him for awhile. He is excited about his sister's birthday though, and has even helped pick out a gift and card. She has asked for a charm bracelet, and he picked out a soccer ball charm for her (good thing she plays soccer!).

Both kids are excited to have Nene, Papa, Grandma and Grandpa in for the birthday celebration later this week.

Just for comparison, here is a picture of Logan last year on July 4th which happened to be his last day of his 28 day course of steroids. Notice same clothes, but they were tighter last year:

 What a difference a year makes!

Back to our normal

Logan is feeling much better and is back to himself. He is running around, playing and having fun. I do notice that he gets more tired than before, and he even falls asleep many afternoons during "quiet time." Overall he is doing as well as can be expected. He has been taking his medicine pretty well, with no other incidences of it coming back up. Hopefully that will continue tonight with the extra 10.5 pills of methotrexate.

We had a nice weekend including fun trips to the pool on Friday and Sunday. Logan is becoming a little fish, and really enjoys playing in the water. We are looking forward to some more swimming this week and celebrating the 4th of July with a parade, block party and fireworks. Here is a picture of Logan with his new Spiderman shirt on: