Friday, September 19, 2014

Weeks #6 & #7

 
I am so happy to report to you all that Brayden is being a rock star recently! He is tolerating his chemo without hardly any side effects (except for general crankiness which I assume is pain), and best of all he is consistently making counts week after week! So far out oncology team was right, this chemo protocol is a walk in the park compared to our last one, and for that I am extremely grateful!
 
We have been just taking it easy mostly, letting Brayden play outside when the weather is nice, and letting him decide what he wants to do. Since our last blog he's been to the aquarium, to IKEA, and to the zoo. I'm a little bit sad fall is here because that means it is going to get cold and this kid LOVES going outside. On the other hand, I am excited for all things fall as well. I wonder if he will actually be interested in pumpkins this year, but I know he is going to love going trick or treating. I have his costume all picked out and I just started working with him on what he "will be" for Halloween and how to say trick or treat and hold his bucket out for treats.
 
Most recently Peterson Manufacturing company built Brayden a big mailbox and filled it with goodies. He loved getting the stuff out and he has been getting a couple pieces of mail out of his box each day. We are so appreciative they did this for Brayden!
 
Yesterday I learned that Brayden is going to get to attend the Monday night Chiefs vs Patriots game in style. They have special made him a shirt with the #2 and his name on the back and he has field passes as well for before the game. I am sure he will have fun (although daddy may have more fun than Brayden) and I want to thank everyone who helped make this extraordinary experience possible :)
 
As far as the school topic, I met with the school district again and they have decided what areas they will test him in. Those areas are "gross motor" (running and jumping), fine motor (manipulating puzzle pieces), and "general intelligence" (is he understanding what he is saying, does he know his colors, can he count, etc). They said they will not likely test him until late October or early November because the testing is more accurate the closer he is to three years old. Fingers crossed that he will show them where his skills truly are and that he qualifies for whatever therapies he needs.
 
Keep in mind that Brayden's 2nd annual volleyball tournament fundraiser is coming up at Centerline in Blue Springs and we are looking forward to seeing everyone there. Everyone is welcome to play sand volleyball, but if you don't want to play you can still come by for food, drinks, and some awesome raffle prizes. We are still accumulating prizes but so far we have a bbq grill, a football signed by Alex Smith, and lots of restaurant gift cards. As always thank you for reading about Brayden and praying for him!!!!!!

Friday, September 5, 2014

Week # 5

 
The last week has been jam packed with fun! Friday night we took Brayden and Lizzy to dinner,
 
Brayden LOVES HiBoy cheeseburgers :)
and then to Santicaligon to ride rides. They had an awesome time and I think the racecars are still their favorite.
 
 
 
He spent the weekend with mawmaw and pawpaw and they were kind enough to take him to the pool both Saturday and Sunday. On Monday we went to Schlitterbahn and all the kids LOVED it.
 
 
They played in the kiddy area for a while and then we headed for the cooler stuff. They have these tubes there that are for two people, but the front hole has a bottom for them to sit in. Brayden and I went down the small water coaster and while we headed down the first drop I thought "oh no he's going to be scared" but then I heard the giggles. When we got to the bottom he was laughing uncontrollable and said "I wanna go again" but the lines were just too long. We floated down the many rivers, but found that he enjoyed to fast moving rapids the most so we did that twice :)
 
On Tuesday we went to clinic and he did great! He barely cried when it was time for port access and counted with the nurse 1, 2, 3....poke. He got his first dose of the IV antibiotic but it made him vomit :( We paused the infusion and the nurse gave him some medicine before restarting the infusion. His ANC actually went up and he made counts with plenty of room to spare!
 
 
Tuesday evening we took Brayden to his first Royals game and he had an awesome time. He ate lots of ballpark food, drank soda, and cheered on the boys in blue.
 
He didn't really understand but he loved cheering anyway!
Wednesday and Thursday he went to "school" at mothers day out and had a great time. When I picked him up both days he said "I had fun", so letting him go two days was definitely the right decision!
 
Today we are just taking it easy and doing some stuff around the house. As I got his bag out to get him ready to go to pawpaws house tonight he actually got his braces out of his drawer and threw them in the bag. He also told me "I need my float", but I don't think he understands that all the pools are closed :( I think next week we will try to take him somewhere to swim indoors....
 

Friday, August 29, 2014

Week #4

 
 
Brayden had a great week! Unfortunately he has decided naps are over (even though I know he is tired) and keeps saying "I don't want to" when it's time for his nap. I am not too sure what to do about that, so for now I have just been putting him to bed earlier at night.
He actually fell asleep in the cart.....
He enjoyed his class at Marion Hope on Monday, and then we went by the toy store to get a case for his hot wheels. While we were there he pulled a HUGE dump truck off the shelf and said he wanted it. I told him he could have it if he could carry it to the register. Hehehe. He gave it a valiant effort, but couldn't even get it off the ground. It was very cute and I probably would have bought the truck for him except he has the smaller version at home :)
 
 
On Tuesday we were in and out of clinic in 2 1/2 hours and he did great as usual. His ANC is continuing to drop which is a bit concerning because our team wasn't anticipating his counts to be affected this much. We will be changing his antibiotic back to IV instead of using the oral Bactrim at home since the Bactrim can suppress the immune system. I am hopeful that he will make counts next week, but I also won't be surprised if he doesn't.
 
Running out of clinic!
On Wednesday we went to an event to remember a young man named Blake Gresham. Blake was a tow tuck driver hat was sadly struck by a vehicle while attempting to tow a vehicle on the Bond bridge in KC. He was a very young 18 years old when he passed away that day :(
Tow trucks gathered at Riverfront park and turned their lights on at dark to remember Blake and to remind everyone to move over and slow down for emergency vehicles. They were kind enough to let Brayden climb into the trucks, and they let him help turn on Blakes truck lights a dark. It was a great event and I am always amazed when you see the community come together to support a great cause.
 
 
 
Last night we went to Aunt Jills for dinner. He was so excited when we turned into their neighborhood and immediately started in roll call fashion "I wanna see Aunt Jill, I wanna see Uncle Shaun, I wanna see Wizzie, and I wanna see Wogan"! Those three little ones ran around like crazy ones while my sister made dinner, and it was nice to see Brayden having fun with his friends. They has a few intense moments, but they did well :)
 
Today we went to our appointment with the school district. It was pretty uneventful and they asked me tons of questions about Brayden. They took notes based on what I said and told me they would be letting us know what areas they wanted to test Brayden in within 30 days. The testing would take place in the next 30 days, and we would get the results and plan within the next 30 days. So basically we won't know anything until late November.
 
Tonight we will be heading out to Santacaligon to check out some crafts and let Brayden ride some carnival rides. When I drove by earlier it looked like they have the race cars he loved so much as Myrtle Beach, I just hope he's tall enough to ride them.......
Have a good weekend everyone and as always, thanks for praying for Brayden!

Friday, August 22, 2014

A magnificent week! (#3)

 
Brayden has had an awesome week! He started a different group on Monday with a new group of children at the Marion Hope Center because his other friends all turned three over the summer :( His new group will be as great as his last I think and most of his teachers are the same. They said he is doing well and he can officially drink from an open cup unassisted! Go Brayden!
 
On Tuesday he had his chemo and he did well aside from the usual crying with port access. The nurses think the crying is mostly anxiety because he doesn't cry for the actual poke and they think that will decrease over time. I sure hope they are right because the waterworks when we take his shirt off it pretty rough on this momma. He ate goldfish, played with cars, and watched bubble guppies. We were in and out in just over two hours which was much better than last week. His counts are dropping gradually but so far none of his numbers are concerning or require any additional treatment! On Wednesday he had physical therapy at home and did great as usual. When our PT came in he immediately said "I want cars and trucks". He is SO motivated by cars and trucks!
 
On Thursday Brayden had his police and fire day with the city of Lees Summit. He said "cheese" for all the news people and even told them on camera "I'm going to ride on a fire truck". He then sat with his pawpaw on a police motorcycle, crawled in and out of police cars, and awed at the red and blue lights on the cars.
 
 
From there he got to ride in a police car with a police escort over to the fire station and he thought that was pretty exciting!
 
When he arrived at the station he got a hat, tshirt and a real badge from the assistant chief. He then got in the truck for a bit, pretended to drive, and got some photos. Then they got the water hose out and he got to man the hose for a bit!
 
I am sure he enjoyed that part because he has been telling me for a week now that "water comes from the hose". He then enjoyed a ride around downtown Lees Summit on a real firetruck from the 1950's, and by the end he was helping steer the truck a little.  
Everyone was very kind and patient with Brayden and he had a wonderful day. I don't really have the words to express how grateful I am that Brayden was able to have this experience, so I'll just say thank you again to everyone who helped make this such a special day. A special thanks goes out to Ronnie for reaching out to set this up! Today mawmaw called and told me that Brayden made the front page of the Kansas City Star. That clipping is going to look awfully sweet in his scrapbook!
 
Today we went to lunch with Brayden's uncle Pat and have just been taking it easy. After lunch we took daddy back to work and found a present for Brayden......... A big box of hot wheels! Brayden latched onto a few and clutched them all the way home.  He seems a little cranky and tired today (although he is refusing to nap) so I am hoping he will feel better tomorrow! He is excited as always to spend the weekend with his mawmaw and pawpaw. At ten this morning I found him tying to put his flip flops on and he asked me for help. When I asked him where he was going he said "I going to pawpaws house"........ so off to pawpaws he will go tonight. Thanks to everyone who keeps praying and following Brayden because I really do believe it makes a difference!
 
 

Friday, August 15, 2014

Week #2

 
Brayden has been pretty busy this week! On Monday we went by the Fort Osage fire station to see some fire trucks. They were great and even offered to take Brayden for a ride, but Brayden was VERY afraid of the trucks. He wanted to be held and most certainly did not want to get inside any of the trucks :( Hopefully next time he will be less scared.
 
 
After the fire trucks we went to dinner with mawmaw and pawpaw on the Independence square. While we were there we saw an old wagon being pulled by mules and Brayden wanted to go for a ride so we did. It was a short twenty minute historic tour and it was actually pretty neat. Brayden enjoyed the ride and loved watching what he called "horses". The guide corrected him and told him they were mules not horses, and Brayden looked very confused. He did stop and pet the mules when our ride was over but still called them "horse".
 
 
On Tuesday we headed to clinic and unfortunately this week's chemo was not as quick as last weeks. We spent a little over three hours in clinic Tuesday morning but Brayden did well considering. He did better for his port access with the numbing cream but he did cry when I said it was time to take our shirt off. After he got settled into my lap and the nurse began scrubbing the port site he attempted to kick her and I felt terrible because he barely missed her pregnant belly.  Thankfully Bret was there to hold down his feet and after we started singing his favorite song he calmed pretty quickly. For the next three hours he played with his bus, watched bubble guppies, and ate three bags of goldfish. I found out that we barely made counts the week before. His ANC was 790 and to receive chemo it must be >750. They thought his ANC dropped due to that viral infection that also caused his fevers. This week his ANC was 2000, so it bounced back nicely! Thankfully he is tolerating the chemo very well, and I have not noticed any side effects at this point.
 
 
 After chemo we went and got him a haircut. He actually likes going to the barber and is pretty chatty with them. They did a great job as usual and then Brayden headed home for a nap. After his nap we went to get his pictures taken. Monika with MonPhotography was kind enough to take some pictures for free! We took them outside as a nature preserve and she was really great with Brayden. I am excited to get them because I think they are going to be really good.
 
On Wednesday we got out and did some shopping for fall clothes for Brayden. I am amazed to see how much he has grown, but mostly he is only getting taller, not really heavier. This is making shopping for him quite difficult because the pants that fit him around the waist are too short and the pants that are long enough don't stay up. After making him try lots of things on we did find him a couple pairs of jeans that I think will work after I wash and dry them. It appears that the adjustable waistband is going to be our friend this year.
 
Yesterday Brayden went to mothers day out and I got some stuff done around the house. It's amazing how much I miss him when he's at "school" even though he's only gone from 9:30-3. In two weeks he will start going on Wednesdays AND Thursdays, and while I know he loves going I am going to miss him like crazy. Watching all the kindergarteners on facebook yesterday made me happy and nervous because there is a chance that Brayden will be starting real school starting in January (at 3 years old).
Currently all of our therapy is through "first steps", which is a state run program to address toddlers needs in the home and teach parents what to do to help their child. It's similar to "parents as teachers" but with a whole array of therapists (PT, OT, speech). Unfortunately kids age out of this program on their third birthday and transition to the school district instead. I go to our appointment with the school district in a couple of weeks to determine what will happen when he turns three. I will know a lot more after that appointment, but the short story is this: Based on where he lands on his developmental evaluation he could start going to the early childhood center for special education for three hours Monday through Thursday, he could qualify for zero therapy at all, OR somewhere in between. That decision is up to the district so I am relieved we live where we do. Who would have thought when we bought our home that the school district would be deciding what Brayden needs?
 
 
He has been talking about going to pawpaws house all day today. I think he knows that mommy packing her lunchbox means he is going to pawpaws for the weekend and it makes him one happy kid. I'm sure they will have a great weekend as usual!

Tuesday, August 5, 2014

Week #1

 
On Friday Brayden has his port placed and he did great as usual! The nurse got his IV and labs all in one poke, they started on time, and we were home by lunch. Brayden was pretty tired, had a pretty bad cough, and slept most of the day but I didn't think too much about it. Shortly before dinner he crawled up into my lap and he felt very warm so I checked his temp and he definitely had a fever. I spoke with the oncology oncall person and we were instructed us to go directly to the ER.
 
 
We spent many hours in the ER for which they accessed his fresh port to draw blood cultures (and he cried a LOT), did a chest xray, and gave him an IV antibiotic. Child life was kind enough to get the movie "cars" for Brayden to watch to help pass the time. When the doctor came in to look in his ears he pushed her hand away and said "I'm watching cars". It was so cute and really showed his little two year old personality. We did eventually make it home and I finally put Brayden to bed around 2AM. Friday might have set a new record for most time spent at CMH in one outpatient day. Saturday morning he seemed a little better so I went to work (late) but I am still counting it :) He spent most of the day sleeping off and on with a low grade fever with mawmaw and he finally came to life around dinner so he got treated to the Olive Garden because he LOVES the salad and breadsticks so much he is usually full before the pasta comes.
 
 
Today marks the beginning of our year long relationship with "Vinblastine". Brayden did so great for vitals/height/weight he got to pick some crayons out of the prize box. He was talking about a bus on the way to his room so they found him a bus to play with. While no one ever wants to have to be in this clinic, they do their very best to make it enjoyable for these kiddos. I am happy to say that we were in and out of the clinic this morning in 90 minutes and while Brayden did cry for port access it wasn't nearly as bad as in the ER. He has come so far developmentally since his previous chemo that he knows more about what to expect. As our nurse went to gather the supplies for access I said to Brayden "Let's take our shirt off!" 7 months ago he would have just lifted his arms up but today he immediately started crying and tried to run away. When the nurse came back and started cleaning his port site she sang him a song and he started calming down. He did well until the actual poke, so next week we will put some numbing cream on before we leave the house. I am hoping that with each week access will get easier for him. I think my husband said it best as we pulled out of the Children's Mercy parking garage this morning when he said "One week down, fifty one more to go". I didn't know whether to laugh or cry at that moment so I did neither. Two weeks ago we were told his tumor was progressing and at that moment it felt like we were getting his initial diagnosis all over again. I was immediately as scared as I was when they found the tumor, and while I am still scared, it is lessening every day. Brayden is loving life as usual and smiling through most everything so we are just doing all things fun.
 
My dad and husband got started putting his swing set together on Sunday and Bret is finishing it today. Brayden of course wanted to help......
 
Helping build my slide
 
are all these tight daddy?
 
 
I think it will even be done in time for him to play on it for a bit tonight after it cools off some! Thanks to daddy for working all afternoon in the 90+ degree heat to make it happen!
 
 

Monday, July 28, 2014

Happy Monday!


Happy Monday everyone!

We have received so many kind words and prayers over the last week and I am so appreciative of that. I am overwhelmed with emotion when I think about how many kind people have reached out to set up “fire truck days” for Brayden! Multiple people have reached out to offer a hand during this difficult time and I want to thank everyone for that. Thankfully at this point we are doing okay and truly don’t need much right now, although that may change down the road a bit. Brayden did get a delivery from the UPS guy today, and it was a sonic gift card! It brought a smile to my face and I am sure it will bring MANY smiles to Brayden with each delicious drink he gets after his chemo.
 
Overall Brayden is doing very well and still doesn’t understand what is about to happen and I am grateful for that. He is all smiles as usual but I think he may figure out what’s about to happen to him on Friday afternoon when he wakes up with his port, but we will see. He had a great weekend with his mawmaw and pawpaw, and Lizzy even spent the night with them on Saturday. They went shopping and found a stuffed Dalmatian with a fire hat. Brayden promptly called it a “firedog” and latched onto it so they bought it for him along with a toy fire truck. It was surprisingly difficult for me to leave Brayden to work this weekend (even though I know he couldn’t be in better hands). A big thank you goes out to my kind coworker for that big hug in the med room……. I really needed it. I have such a hard time leaving Brayden, but financially we don’t have a lot of choices because it is important to me to provide Brayden with stability. I want his life outside the oncology clinic to continue as it always has, whether that be an impromptu toy bus purchase at the grocery store, giving him his favorite snack (pistachios are not cheap!), or buying him ice cream at the zoo. I feel like stability is the one of the few things we can actually control, so off to work I will go. At this point the dust has settled and we are back to making memories! I am focusing on the things we can control and showing Brayden every day how much we love him is at the top of that list. He came into our room at three this morning and asked to get into bed with us. I happily obliged and he snuggled right down and went back to sleep. Later as I was watching him sleep he started giggling (while still asleep) and I thought to myself "I want to remember this forever". Today we took Brayden to the pet store and picked out his fishes......
He calls them fire fish...... and he wasn't too happy to ride in the cart, but he did it!
and we then tonight  we picked up his swing set......
Tomorrow we are planning on going to the zoo. Brayden isn't able to see too many of the animals but he LOVES riding in his stroller and it is supposed to be a beautiful day so we are going to take advantage!  Hopefully dad and pawpaw will get his swing set put together this weekend so it will be ready for him when he recovers from his port surgery! Thanks so much for reading about and praying for Brayden!