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!

Tuesday, July 22, 2014

Heartbreaking MRI results

Photo: Heading for our MRI..... Brayden did so well for his physical in the oncology clinic this morning :) he sat in the chair for the practitioner to assess him and showed her that he knows the stethoscope is for listening to his heart and the reflex hammer is for hitting your knees! He is getting so big.....
 
As many of you probably already know, Brayden had his MRI today, and we did not receive the results we were hoping for. I was sure the tumor was stable because Brayden has been doing so well but this momma was wrong.
 
We started the day in oncology and Brayden did great. He sat in the chair while they did his blood pressure, temperature, reflexes and listened to his lungs/heart. He then walked to radiology like a big boy and played on his tablet in the waiting room. They unfortunately had a tough time trying to get an IV and they had to try three times, but they finally got it. He recovered from the sedation and got settled into his wagon for a long nap.
 
Photo: All done with his MRI, now let the real waiting (for results) begin!
 
While we waited for the results I was surprisingly calm. I had clearly reassured myself that all would be well, but when Dr G came in I just had a feeling it wasn't great. Normally he makes some small talk first, but there was none of that today. 
 
The tumor is showing a LOT of increased enhancement and when you look back as the last 3 MRI's it is clear that there is a pattern. Consistent increased enhancement is considered progression. We learned today that the tumor "measurements" may never change because of the way the tumor is infiltrating the surrounding tissues. The tumor could be present in other tissue, but the tissue could still look normal on an an MRI, so that is why enhancement is so important.
 
Now that it has been established that Brayden's tumor is in fact gaining strength we must end our chemo vacation and reenter the chemo world. Brayden will get his port (central line) placed next Friday and he will start chemo the following Tuesday. He will be receiving a chemotherapy agent called vinblastine. This agent is normally well tolerated but the most common side effects are jaw pain, numbness/tingling in hand or feet, constipation, and decreased counts. He will receive this drug weekly for 52 weeks, and we will get MRI's every three months. The hope at this point is not to shrink the tumor, but we are hoping the tumor will stop progressing to give us more time with Brayden.
 
I have MANY thoughts running wild in my mind right now........ but the most prevalent one is what if the vinblastine doesn't work? We are running out of options! There is a clinical trial right now for low grade gliomas but Brayden isn't big enough (the medication is given in tablets and the smallest tablet is too strong) and he can't take the carboplatin because of his previous allergic reaction. I know I should be so grateful for the time we have had with Brayden but as his mother I selfishly want to keep him forever.  I can't help but think about these things, and while I am sure things will look better in the morning, I am having a tough time this evening.
 
Before todays MRI I had started to think "this might be okay, maybe the tumor has just stopped growing and maybe it won't start growing again". We were doing normal kid things, and Brayden was changing so fast. It had become so easy to enjoy Brayden and not be afraid of what the future held. That has all changed now, and with Brayden restarting chemo I have decided that we will build him an awesome playground in our backyard for him to enjoy as it will be safer and cleaner than the parks we have been frequenting recently. I ordered him a swing set from Walmart that will be here the first week in August and I am hoping it will bring us lots of happy memories!
 
 

Wednesday, July 16, 2014

Our next MRI

 
The last few weeks have been great for us and we are just enjoying the beautiful weather with Brayden. He has been enjoying the time swimming, visiting parks, going on walks, and visiting the zoo. 
 
 
On a different note, we had his "well child check up" on Friday. I think that Brayden has been doing great lately and is making leaps and bounds with his development. Unfortunately the physician we saw felt that Brayden needs to make significant improvements with his speech by his third birthday and if he doesn't than we will need to have him evaluated for autism. This is the same physician that told me Brayden would likely have cerebral palsy and would require intensive therapy to overcome that. I am not too sure what to think about all of this, but after talking with the therapists that see Brayden often I can see why the physician may have thought this. None of the therapists who see Brayden often are concerned about him having autism but only time will tell.
 
 
Brayden's next MRI will be on Tuesday, and as usual the anxiety has began for this momma.....
This will be the MRI that will allow Brayden to get caught up on his immunizations as long as it is stable. As usual we will have the results the same day, which certainly makes this process easier. Please pray for an uneventful MRI and tumor stability!

Tuesday, June 24, 2014

An amazing vacation!

 
Our trip was nothing short of amazing. Brayden did awesome on the airplane going to the beach. He napped a little, looked out the window, ate his snacks, and surprisingly enough all of our flights were on time!
When we got there we rented our minivan and got our carseats from baggage but unfortunately one of them was broken during transport. Delta was surprisingly easy to deal with and after a little coaxing they issued us a loaner seat to use during our trip and told me a check would be in the mail soon to reimburse us for the damaged seat. We were finally on our way, and I was surprised at how minimally stressful flying with Brayden was.
 
 
We got settled into our condo, got some groceries, and went down to the beach after dinner. Brayden was afraid of the water and as I washed the sand off his feet I wondered if it would be a long week for him.
 
 
The next morning we got up, had breakfast, and headed down to the beach. Brayden LOVED the sand and the water so this was what we did each morning with the kids. Every morning Brayden would get up and say "I wanna go wimming", or "Go beach". He happily ran to his room to put his swimmer and trunks on and then stood still for his sunscreen.
Brayden walked miles up and down the beach, crawled in and out of holes Bret dug for him, and scooped sand into his bucket with Lizzy happily for hours every day.
After finishing at the beach the kids always wanted to go swimming in the lazy river on our way back up to the condo so we did that too! As Brayden floated by the water filter he would say "water hiding", and it was very cute. Every time I see a water filter I can hear him saying that in my mind.
We did have one close call where Brayden jumped into the pool without his float but pawpaw fished him out very quickly. On the last day as pawpaw and Brayden were looking for a luggage rack he could see the pool area and did not understand why he couldn't "go wimming". This kid LOVES swimming.
 
Then the kids took a quick bath, had lunch, and took naps. In the evenings we went to dinner and headed out to do a fun activity.
 They stayed up nearly every night until 11 and we certainly made lots of happy memories with Brayden. We spent 2 nights at "Broadway at the beach" which was an outdoor shopping district with tons of kid activities. They fed fish, ducks, ate ice cream, went to the aquarium, and rode kiddie rides.
 
One night we went to meet some baby tigers! This is actually for a great cause and it was really neat although Brayden wasn't too impressed. 
 
One night we went to the boardwalk rode the skywheel.
The views were amazing and the kids thought it was pretty fun pointing out the water/ocean. One afternoon we took a dolphin cruise and while we did see some dolphins, the kids didn't love that activity.
We spent our last 2 evenings at the beachside amusement park. It is amazing to watch Brayden learn things. The first ride I put him were some kiddie airplanes and he cried hysterically.
Lizzie was kind enough to reassure him and encourage him.
I wonder if she will remember these days with Brayden as she gets older. There is no doubt that they are best friends. By the end of our trip it was clear that the rides was by far his favorite nighttime activity. 
We definitely have some thrill seeking 2 year olds on our hands! Brayden and Lizzy prefer the adult rides that they needed a parent to go on with them over the kiddie rides. I was sure when I put him on this ride:
that he would be crying but he was actually laughing hysterically.
And after the "tilt o whirl" which made my sister a little queasy they were asking to "go again".
 
We got back from Myrtle beach very late on Saturday due to a travel nightmare. We would have missed our flight out of Charleston because of the traffic and poor adult planning, but it was delayed due to a ground stop in Atlanta. We boarded the plan and it looked like we would still make our connection in Atlanta with time to spare but then the captain came over and said their was another ground stop in Atlanta for an additional 50 minutes. As I calculated in my head I knew it was likely we would miss the connection. The flight attendant put us on standby for a later flight and looking back she definitely saved us.
As we approached the Atlanta airport she told us to "run" as our original connection was still there, but unfortunately we got stuck on the tarmak and I watched our KC flight pull away from the gate :( We gathered our stuff and as we got off the plane I was emotionally preparing myself to spend the night in Atlanta with two 2 year olds, an 11 month old, and no belongings . We went to the gate for our standby flight and found a lot of people wanting to get on standby for this flight to Kansas city. Thankfully we were already on the list and we were numbers 7-11. The Delta rep told us that our chances were pretty good as their was an international flight on its way that was not going to make it in time. We made in onto the flight but had scattered seats. We found some kind people who switched seats so that Brayden and Lizzy could each sit with one adult. Overall the kids did great with all of the running, then waiting, and more hustling. Our remaining two carseats did not make it to Kansas City until Sunday, but they were delivered to our house by a delivery service which was very nice! To anyone traveling with small children, I would never travel with our carseats again as it was a nightmare! I think I will take my chances with carseats from the rental car company next time.
 
Since getting home I think Brayden has finally gotten rested up, but is already talking about going to the beach and airplanes. It seems to take him a few days after being on vacation and staying up until eleven every night to get back into his regular routines, but I think we are getting there. Today we are going to the lake with mawmaw and pawpaw for "wimming and boat ride".  Pawpaw got a new job this week and he will be working a rotating 4 day a week schedule which will allow to be home some during the week to do fun stuff with Brayden without everywhere being so busy! Welcome to the non traditional work schedule pawpaw, we are happy to have you!