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!
 
 

Friday, June 13, 2014

Off to the beach!



Brayden continues to do awesome, and I have nothing to report on the medical front!! The last few weeks have been uneventful and we have spent time just enjoying life. This week I watched Brayden climb up a playground (with some help) during his therapy session at a local park. Climbing is our PT's trick to simulate crawling since he never really did that. It is a miracle to watch how much he changes from week to week. He is now saying 5 word phrases, and he has started to be more inquisitive as well. During a walk with mawmaw he pointed to a mailbox and asked "whats that". She told him "mailbox" and he pointed the rest of them out to her labeling each one as they walked past. Last night we went to the park and he fed bread to a momma duck and her babies, and the whole way home he kept saying "I fed ducks". He was very impressed with himself.

 
 
Tomorrow we leave for the beach! Pawpaw, Bret, and my brother in law have graciously agreed to leave tonight and drive pawpaws truck the 18 hours to the beach as it will be packed with the gear three kids will need for a week away. In the morning Brayden, Lizzy, and Logan will all be going on their first plane ride together and it departs at 710 AM meaning these kids will be getting up in the four o'clock hour. Please pray for them to be in good spirits for the day of traveling and it might also be nice to pray for the poor people who are sitting near us on their first flight :) I am excited to go on vacation with Brayden as I feel like we are all in a better place this year. Brayden is certainly more stable now than ever and I know that I am in a better place both emotionally and physically. I am hopeful Brayden and his besties will play in the sand, float in the pool, shop until they drop, and just have a great time! When we get back from vacation Brayden and I will start a journey that I hear is going to be tough.....
 
 
 POTTY TRAINING
I feel like he is showing the signs he is ready so we are going to try. If it turns out he isn't ready than no big deal, we will try again in a couple months........ Have a great weekend everyone, and as always, thanks so much for reading and praying for Brayden. I truly believe it makes a difference!
 
 

Friday, May 23, 2014

Happy Spring!

It has been a while since my last update, sorry everyone : )
 
I am happy to say that Brayden is continuing to do very well, and aside from a quick trip to urgent care for pneumonia right before mothers day, he hasn't had any medical appointments!
Brayden has changed so much, and it amazes me everyday how fast he is changing. He has officially transitioned to his toddler bed and can put himself "night night", although he does prefer some cuddles first. Brayden loves going outside and would prefer to stay outside all day if I would let him.
He is answering yes and no questions more appropriately, but we still have some room to improve as he will answer "yes" to a lot of things he really means no.  He knows all of his colors, and he knows the difference between one and two. At bedtime he always asks for "two blankies" if he can only find one. If you ask him how old he is he will tell you "two". He also knows the difference between mine and yours, and he has finally stopped needing a bottle to drink enough fluid to stay hydrated! He knows what sounds a cow, pig, and dog make and he can point those animals out in a book. He is doing so well at mothers day out that he will be starting the summer session with the other "early" 2 year olds (the twos classes are divided into early and late based on their birthday). This is big because that means he is nearly on track with his peers!
 
 
In other news, this momma had her wisdom teeth pulled this week and I was not nearly as brave as Brayden. I was so scared going into the office and looking at all the tools, but then I decided that if Brayden could do all the things he has done then I could get some teeth cut out. He really is braver than I could ever dream of being.
 
Last night after dinner my sister took Lizzy to urgent care so Logan spent the night with us. All of this took place after Brayden went to bed so it was a surprise that Logan was here this morning. When Brayden and I got up today he heard Logan and looked at me with a very big smile and said "Baby Logan sleeping"? I told Brayden I thought it was time to get Logan up and he raced down the hallway. We got everyone up and fed and then these two crawled and scooted all over the kitchen with their cars/trucks/trains. 
 
 
It is amazing how much Brayden loves having Logan here with us during the day. I desperately want Brayden to have a little brother or sister, but for whatever reason we can't seem to make that happen. In my mind I have always thought "what is meant to be will be" in regards to another baby but it appears I may be having a hard time accepting what might be "meant to be".
 
 
 
 

Wednesday, April 30, 2014

A healthier family!

 
The last couple of weeks have been VERY uneventful related to Brayden's health! He is doing normal kid things and has pretty successfully transitioned from his crib to a toddler bed. He does get up pretty early, like 615ish, but then he comes to bed with mommy and daddy for some cartoons. Early morning cuddles are starting to be one of my favorite times of the day.
 
 
Brayden had a great Easter thanks to a fabulous mawmaw and pawpaw (this momma had to work), and the Easter bunny (aka mawmaw) was very good to him!
 
 
He has also been to the eye doctor and got an A+ which means he doesn't have to go back for an entire year!
 
 
Brayden has found a new hobby and that is going outside. This kid doesn't care if its cold or not, he wants to go out! He gets pretty upset when it is time to come in, so that is definitely something we need to work on. We did some serious work around the outside of our house, because as I am sure you can imagine, home maintenance took a huge dip on our priority list last spring.
 
 
Brayden help sow grass seed,
 
 
helped water the garden,
 
 
and he loves to go for walks around the neighborhood!
 
In my last blog, I mentioned that I wanted to start looking into how diet changes could help Brayden. Since then I have read, researched, and agonized about how diet affects our lives. I started reading the ingredient list on the foods we regularly eat and I watched a very startling documentary called "Forks over Knives". While I won't get into the details, the way I feel about food has made a 180 degree turn in the last couple of weeks. That being said we started a "plant based" diet on Monday and my sisters family is doing this along with us. We have taken turns having dinner (to decrease the amount of work and recipe trying) and it's been great so far. In my mind I thought this would be VERY difficult. I wondered how would I get Brayden to eat like this, and how I could sacrifice so many of the foods we love but I ultimately decided that if there was ANY chance it could help Brayden we needed make this change.....  A very kind husband and wife took us under their wings and taught us a little about diet and holistic healthcare as a whole and it was greatly appreciated.
 
 
Since Monday I have learned Brayden likes so many more foods than we have been offering him! In the morning I have been making him a smoothie with fruit, spinach/kale, and flax or chia seeds. He actually likes them and when he is done he whines and asks for more. He also loves granola, pistachios, mushrooms, spaghetti squash, coconut milk yogurt, and every fruit I have offered to him (although he was not too keen on trying the blackberries, but after trying it he loved them). He wasn't crazing about cream of broccoli soup tonight but he did eat it :) He does still ask for some of his old favorites occasionally (corn syrup loaded fruit snacks and chips) but he is easily redirected and is usually content with his new snacks. I am happy to say that since we have started this I am sleeping better and have tons more energy. It really is amazing how much what you put into your body affects you overall!

Wednesday, April 16, 2014

Different MRI results!

 
Brayden is changing so fast, and is doing new things every day! It is amazing to me that I drop him off with my parents on Friday and when I pick him up on Sunday he is doing new things. Most recently he has learned to say the names of everyone in our family, is learning to go up and down stairs more safely and he knows his colors! He tends to get blue and green mixed up from time to time, but he knows them. He is doing things now that I wasn't sure he would ever do and I can't put into words how grateful I am!
 
 
Last week we took Brayden to the Great Wolf Lodge, and while they didn't have a lot of things he could do we still had fun! He went down the kiddie slide more times than I could count and he loved it. The lifeguard said he could ride down one of the big slides with me on a raft so we went for it...... Unfortunately he was NOT impressed and he was nearly in tears by the time we reached the bottom (and I felt terrible). Who would have thought that huge hills and snow would be fun but not water slides?
 
 
It was welcome distraction given the upcoming MRI and I am sure we will go back when they are selling day passes again!
 
 
His MRI was yesterday, and he did awesome as usual! We started in the orthotic clinic at 9 where he got his new braces. I am excited about these new braces because they are certainly smaller and less restrictive for him.
 
 
After we got his braces we went to see all his friends in oncology for his physical. In the two short months it has been since our last visit Brayden has changed so much, and that was apparent because he did NOT want his vitals taken or to cooperate for a height. He was very shy and didn't seem to recognize too many people. After his physical we headed down to radiology, and it broke my heart because the second we opened the door to the waiting room he began crying. It only got worse after we got called back to the sedation area, and as I sat him on the cart the hysterics began. Thankfully our nurse was very efficient! She quickly got some vitals, and poked him for the IV so he could get the hardest part over with.
Bumblebee mitten
After the poke he finally got in his safe place and went to sleep until it was his turn.
 
 
Brayden was away from us for nearly two hours and I was beginning to get concerned when they finally came to get us. Apparently the MRI machine went down during his scan causing a delay, which also required him to get more drugs. He drank some liquids and we got him all settled in his wagon and headed back to oncology. I think this is really when the nerves started to get the best of me because I knew the next hour would decide Brayden's future.
 
 
Thankfully Dr G came to see us relatively quickly. He initially said the report wasn't read yet but that he looked at it. As he sat down to show us the pictures the official report popped up and as he was looking at it I could tell something wasn't right. The report stated "Diminished size and decreased contrast enhancement", which basically means stable or a tiny bit better! Dr G unfortunately did not agree, and showed me multiple areas of INCREASED enhancement and my heart sank very quickly. It was ultimately decided that these areas were not significant enough to restart chemo right now, but that three months would be too long to go before obtaining another scan. The plan was to  get another MRI in 2 months and send those images to Boston for a second opinion.  When we left Dr G told me he would talk to the radiologist and see if there was a reason the images were read as "decreased contrast enhancement" given the areas we were questioning. As we walked to the car I couldn't help but worry a little about the enhancement, but ultimately I decided it was win for Brayden. It was a long day (7+ hours) but Brayden was a trooper as usual!
 
Today I was spending the day watching my sweet nephew and Brayden play, and the clinic called. I held my breath as I answered the phone, and the practitioner started with "I have good news". WHEW! Apparently the areas where we were seeing the increased enhancement are blood vessels, not tumor tissue!!!! That means the official read was correct and the tumor is STABLE. This is big for us because this is the first truly stable MRI for Brayden since his diagnosis, and it is a huge relief! This means the new plan is to get another MRI in 3 months and go from there. That means we can go on vacation and not worry (as much) about tumor progression. He won't have a central line or be immunocompromised so he will be allowed to get in the ocean and dig in the sand as much as he wants without worry! After you start down this path of pediatric oncology it is amazing how much you appreciate the little things!
 
On a different note, I have had several people tell me about people with cancer who have changed their diet and seen amazing decreases in tumor size/aggression. I have not done too much research about this yet, but I think I will start reading about it. If simply changing his diet could help how could I not do it? Any feedback would be appreciated :) and as always, thank you so much for praying for Brayden and following him! We couldn't do this without the support of our amazing friends and family!