Friday, November 7, 2014

Week #14

The last couple of weeks have been pretty eventful unfortunately, and we actually spent three days at CMH last week. Thankfully all in all Brayden is doing quite well!! The weekend before our MRI Brayden fell and knocked a tooth loose, so we took him to the dentist last Monday. Unfortunately the xray showed a large abscess that they say has been growing for a while and the tooth had to be pulled. Thankfully they were able to pull it while Brayden was still sedated after the MRI so for that I am grateful! He has had no difficulty adapting to the loss of one of his front teeth, and I think it bothers the adults in his life a lot more than him. The MRI showed mixed results, but I think we should just be grateful that it didn't show all negative things. Basically it shows that some of the areas which looked worse on his last MRI (which prompted our chemo vacation to end) continue to look bigger and brighter, but some of the other areas are looking smaller and less bright. Vinblastine tends to build in the blood over time so 6 month scans can show more improvement than 3 month scans. Hopefully our next MRI will show all good things!

Brayden trick or treated as a dinosaur this year and he was awfully cute. To be honest though, I don't think he loved the trick or treating. He refused to carry his bucket but he did say "trick or treat" and "thank you" at nearly every house we went to. He was relieved to take his dinosaur costume off and carry on with his evening as usual.

This week I received the results from the school district regarding his eligibility testing. He qualified for services and will start formal special education preschool January 6th. He will go Monday through Thursday from 8-11. In my mind, I knew he had some delays and that he was not on track with his peers, but I was surprised at his lower scores.  Don't get me wrong, I am happy he qualified and we won't see a decrease of therapies, but how I felt when they gave me his scores surprised me. There is something about ranking his development that hurt my heart because I have always chosen not to do that. During our 3 years in first steps I have always said "I don't want to know where he is on the developmental scale, just tell me what to work on and what the emerging skills should be" and they respected that. I guess in my own way I just didn't want to know because it is so easy to focus on the negative instead of the positive.

In the summary portion of the report it says:
 "Evidence of a young child with a developmental delay does exist in the areas of cognitive, communication, and physical. Brayden's performance is below that of his same age peers. Brayden would benefit from appropriate special education services to address his significant delays".

Seeing that on paper hurt my heart, and I think it is probably because I know how far Brayden has come. At one point last year we were working on alternative forms of communication because he couldn't speak. Now he is speaking full sentences (sometimes appropriate and sometimes not) but he is making progress every day and that's what matters. I am very grateful that he has the opportunity to start formal preschool and hopefully with the right teaching approaches he will continue to make leaps and bounds developmentally. I go back in 2 weeks to fully determine which and how much of each therapy he will get in addition to his classroom time. I am sure he will love preschool and I am sure he will love riding the school bus even more. It is a bit scary though to think about putting your just turned 3 year old (with significant physical, communication, and cognitive delays) on a school bus with someone I have never met, but I guess it's part of it. I'm sure we will all adjust and all will be well. I think the toughest part will be that I won't be allowed to participate in his therapies any longer. For 3 years now, I have been in the floor with him and all of his therapists and they have been teaching me how to help Brayden. Now he will be at the school district where parents aren't even really allowed in the building. I know he will do awesome by himself but it will be hard for me to get a weekly progress report versus talking directly with everyone involved in his care.

I think this weekend mawmaw and pawpaw will be taking Brayden to see the dinosaurs with his bestie. I am sure they will have a great weekend as usual! As always, thank you so much for praying for my sweet boy and following his story!

Friday, October 24, 2014

Week #11 and #12, and an upcoming MRI

We have spent the last couple weeks doing all kinds of fun things with Brayden, although I am sad to say that I think the chemo might be catching up with him a little. He is spending more afternoons laying around and not doing much or just fussing, but we take every opportunity to get out and enjoy this beautiful weather when he is happy. He continues to enjoy his playground in the backyard and still loves swinging! He has found a new love and that is "bump city" at GAGE in Blue Springs. On Friday mornings they open a small part of the gym for preschool kids to play. They have trampolines, a three person swing, a foam pit and tons of stuff for him to climb on! He has also been spending time at GAGE with his aunt Jill and uncle DaShaun since they coach cheerleading there. The cheerleaders have put together a fundraiser Bump City for this Saturday evening, and 75% of all the money raised will go towards Brayden's expenses.
We also went to the pumpkin patch in Liberty and had an awesome time! The weather was beautiful and he fed animals, went down slides, and rode the train!
We have also spent time at Kauffman Stadium cheering on the Royals thanks to some very kind people. We were gifted 2 tickets for an ALCS game and Brayden (and his dad & I) had an amazing time!
He had such a great time I registered us to have the opportunity to buy world series tickets but it didn't work out. I looked at tickets a lot on stub hub but we just couldn't afford to buy them (and even if we could have afforded them I am not sure I could have convinced myself to buy them). On Wednesday around lunchtime I got a call from a friend saying "I am gonna get you guys in tonight" so we showed up when and where I was told, and snuck in. For those of you that know me well, you know that this is WAY out of character for me because I am such a "by the book" person, but these smiles were more than worth it! Mawmaw and pawpaw also made it to the world series too thanks to a different friend! Brayden just thrives on the energy in places like this. He cheers with the crowd and loves giving high fives to the people around us when the Royals score runs. Every time Moustakas batted and the crowd cheered "mooooose" Brayden would look around and say "cow". It was very cute and he had the biggest grin on his face!
I am guessing this will be one memory that will be hard to top for Brayden's daddy.......
Yesterday he went to the testing at the school district and we will get those results in a couple of weeks. Those results will determine what his therapy/school schedule will look like in January as we will no longer have the in home support of first steps. There are a lot of questions including whether he will continue to go to Marion Hope as first steps currently pays for that, and will he start going to the school district for "School" or will he continue at Mothers Day Out. He currently is receiving a significant amount of therapies and I am anxious at the thought of decreasing those therapies, but time will tell.
On a more serious note, this is week # 12, which means Brayden will be having an MRI on Tuesday. We have spent the last 12 weeks doing so many fun and extraordinary things with Brayden. He got to be a ring bearer, a fire fighter and policeman in Lees Summit, went to Monday Night football, went to a Royals ALCS game, and went to the World series. That being said we have also spent the last few months doing a lot of this......
and a lot of this.......
All of those extraordinary experiences give us something to look forward to (and something fun to remember) when things get tough and I am so grateful for everyone who has helped make those fun experiences a reality. It is amazing how your perspective changes during this experience. When he was diagnosed I wanted to lock him inside and cuddle him forever so he wouldn't get sick. Then I learned that not allowing him to do fun things wasn't fair to him, so we got out and did some things. Then he came off treatment with a short period of tumor stability and we became more like other families with healthy children and he could do whatever he wanted. 
It seems so unreal to me that 3 months has gone by since we received the heartbreaking news that Brayden's tumor was progressing. When we learned his tumor was progressing our free time became ALL about fun. That being said, I would give every extraordinary thing we have done back if it meant that he didn't have brain cancer, but unfortunately it doesn't work that way, so I continue to try and let him experience as many things as he can in his short life.
It feels like we just started going to the clinic every Tuesday for chemo and labs, but according to the calendar that just isn't true. I have always said that the ultimate goal is to allow Brayden to live his life as normal as possible and to have no regrets about how we spent this time with him. I am happy to say that no matter what the MRI shows on Tuesday, I have zero regrets about how we have spent these last few months.  I have done everything in my power to allow Brayden to do extraordinary things (with the a significant amount of help from so many generous people.) and thankfully he hasn't even been restricted due to low counts. Aside for some tiredness and occasional fussiness he has had virtually no side effects from the chemo and he is the same happy little boy he has always been.  
Brayden's MRI is on Tuesday and is scheduled to begin at 1130. Prior to his previous MRI's I have always found reassurance in how "great" Brayden looks and that he continues to do new things. Unfortunately 3 months ago I learned that none of that matters and the tumor can be growing even if Brayden looks "great". I can't put into words how much I want this MRI to show us that the chemo is working and that we are back to a "stable" tumor. I would give anything to be back to a place where I'm not wondering what the future holds. This is such a happy time of year with the holidays coming and I so desperately want to be able to enjoy it without worrying. As always prayers are greatly appreciated, and we definitely need them now. Thank you so much for reading about and praying for Brayden!

Thursday, October 9, 2014

Week # 10

Brayden has had a great week so far! A big thank you goes out to everyone who came out or helped in anyway for Brayden's Volleyball tournament. We do still have some tshirts and bracelets for sale if you are interested.......Just send a check with your order to:
Standing with Brayden 
PO Box 450
Grain Valley, MO 64029
He went to group therapy on Monday and did well as usual. The teachers said he is doing AWESOME, but they do have a few things for us to work on. That being said Brayden is lacking in some areas, but we are working on them. The most important thing is that he is happy, and he continue to make progress with every passing day!

Brayden did great in clinic on Tuesday and he cried zero tears the entire time we were there. His counts are doing awesome and I am grateful for that because he is going to be a ring bearer in his Uncle Pat's wedding tomorrow night and now I won't have to be a germ gel/Lysol wipe freak!
He had school yesterday and today, and then tonight is the rehearsal dinner. Prayers that he will be wearing his listening ears and be cooperative would be greatly appreciated.
Tuesday afternoon I attempted to turn our air conditioner back on because Brayden was complaining "It's hot in here". Unfortunately when I turned it on I found it to be blowing warm air. We had a company out yesterday who found it to be low on 'Freon", and unfortunately they found the the coil is leaking (which also works our heat). He basically told us it isn't worth fixing and that we need a whole new system. I had him fill it with Freon and I am hoping that leak is slow and that it will limp along for as long as possible.
In other news, the gymnastic gym GAGE in Blue Springs is having a fundraiser for Brayden. It will be a "bump city" which is basically where they open the gym for kids to play on the equipment for a few hours, and it will take place on Saturday October 25th. I'll share more info when I know more :)
We have also been gifted tickets for Monday nights ALCS game so we can take Brayden!!! These tickets were gifted to us by a kind man we just met who knew we were trying to buy tickets last week. He reached out to us Monday night to see if we were able to get tickets and when I said we couldn't he offered us a pair of tickets. I was speechless because the demand is so high he could have done many other things with those tickets. A big thank you goes out to him for his extreme generosity.  
As always, thanks to everyone who follows or prays for my sweet Brayden. I continue to believe it makes a difference!

Thursday, October 2, 2014

Weeks #8 & #9

This has been a big week for Brayden so far! He did have a respiratory virus over the weekend that caused him to vomit several times..... With that being said, a huge thanks goes out to mawmaw and pawpaw for cuddling my sweet boy all weekend and changing his (and their) sheets as well as giving baths in the middle of the night. It certainly makes going to work easier knowing that he is in good hands!
He had an amazing time at Monday night football and we met so many kind people during that experience. Brayden got his ball signed by the chiefs punter Dustin Colquitt, and he got to go out on the field for the coin toss! He seemed quite interested in KC Wolf, and while I don't think he understood how cool this activity really was, I do think he had a good time! A huge thank you also goes out to Charlie for her help with all of this as well as Chiefs organization! Everyone we came into contact with Monday evening was genuinely kind, and we are grateful to have had this experience with Brayden.
On Tuesday we had a little bit of a rough day at clinic, which may have to do with Monday night since Brayden was up WAY past his normal bedtime, but it was worth it! For some unknown reason it took his labs longer than normal to result, and he needed to get his IV antibiotic that he takes monthly. He was medicated prior to the infusion with oral nausea meds, but for some reason they didn't work and he vomited shortly after the infusion began. That meant we had to stop the infusion, get orders for IV nausea meds, and then give them. He also got his flu shot while in clinic and did awesome. We spent a total of 4 hours in clinic which is longer than normal, and it just wasn't our day. During our time in clinic Brayden was watching the bubble guppies, and at some point he pointed to the TV and said "He has a brain tumor". I was absolutely speechless that he said that and it absolutely broke my heart. Even today I still don't really know what to say about it......
On Wednesday he slept very late and went to school. He normally LOVES going to school but when I dropped his off he actually cried. I am chalking that up to his flu shot and hoping that he was just in general not feeling well because when I picked him up they said he did great as usual. Today he went back to school and seems to be back to his old self. He got his school pictures taken today and I am anxious to get the proofs back. His teacher said he smiled and said "cheese" so I am hoping they got some good pictures of him.
This weekend is Braydens annual sand volleyball tournament at Centerline in Blue Springs and registration starts at 10AM! We have some great raffle items this year and Brayden will be there to say hello too, so come by and see us even if your not interested in playing. If you want to play but don't have a team I am sure we have someone you could play with. Hope to see you this weekend, and as always thank you so much for reading about and praying for Brayden!!!

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!