Thursday, January 22, 2015

MRI results and a new Week #1

 
We have certainly had a busy and emotional week at our house this week! We began the week with Brayden's MRI on Monday, and as I am sure many of you already know from facebook, the results were not what we had hoped for.
 
 
Brayden did pretty well as a whole on Monday for the MRI, but he was pretty darn upset that he couldn't eat breakfast or help himself to his snack cabinet (which I locked the night before to avoid me being the bad guy). He sat like a big boy in radiology for port access which I think freaked the nurse out, but she eventually figured out it was alright for him to sit alone. Unfortunately, it took a pretty significant cocktail of fentanyl/nebutol/versed to get him to sleep and he would not wake up enough after the MRI to eat or drink for the nurse, but thankfully anesthesia let us leave anyway. He basically slept from the MRI until morning with the exception of a short dinner, a bath, and 30 minutes of cartoons before bed. He was so drugged he couldn't walk safely, or even sit up in the bathtub without help. The cocktail he has been getting prior to MRI's is considered "sedation" and is administered by an RN without a physician or anesthesia present. Since he needed more meds and they couldn't wake him up, it has been decided that all future MRI's will need to be done under "anesthesia". This means he will be in a deeper sleep, anesthesia will be present for the entire MRI, and the medication that will be used is called Propofol. This drug works nearly instantly, and wears off very quickly so he will not be so sleepy for so long and he will not be so uncoordinated which I am sure he will like (and mommy will like too).
 
 
We had no more than gotten home and gotten Brayden put in his bed when our oncologist called. I had that sinking feeling in the pit of my stomach because he NEVER calls that early. He basically told us that the Vinblastine wasn't working and we would need to come earlier the next day to discuss Brayden's treatment plan because his new chemo would take much longer to administer.
 
 
On Tuesday morning we got up and I put Brayden on the bus for school (and he was excited as usual when the bus pulled up). Then my husband and I went to breakfast and then headed to the store to buy Brayden's favorite snacks because a quick google of the new chemo suggested he would have some nausea and vomiting following the chemo administration. I was trying to keep it business as usual but it was tough. Your mind can just run wild until you actually sit down to view the MRI and talk to our oncologist.  We picked Brayden up from school and headed to clinic. We got our education on the new chemo (Avastin and Irinotecan will be given every two weeks through his port for 1 year), and while there are some pretty significant side effects it doesn't sound any worse than the other chemo we have done. There is a chance that he will develop significant diarrhea that could cause dehydration, but so far we haven't seen that. There is a chance it will affect his kidneys and he will start leaking protein into the urine so they will check his urine at every visit. If that happens then the dose will have to be reduced. He could also have a serious allergic reaction (been there done that) so he is now carrying an epi pen. Nausea and vomiting is also a side effect, but that was a given and they said it shouldn't really be too bad. It will affect his blood counts some, but hopefully not too much, and they said his hair may thin but likely won't fall out completely. Thankfully our nurse practitioner was kind enough to play with Brayden while we went to see our oncologist and discuss the images. To be honest, most of the changes were minor. It was clear that there are pieces inside of the tumor that are brighter, more consolidated, and the areas that light up under contrast are a bit larger. There are three of these areas, but one of the most concerning areas that is now lighting up is on an area that links the right and left sides of the brain. This could indicate multiple things, but the obvious concern is spreading of the tumor, but both sides of the thalamus have always appeared abnormal on imaging so I am trying not to let this area bother me too much.
 
 
We spent a total of 6 hours and 15 minutes in clinic in this tiny room but Brayden did great! The nurses were great as usual as well and got him (and mommy) snacks and a refill on his sonic to pass the time. He took a nap after the Benadryl and spent the rest of the time watching his beloved "Paw patrol'. When we left the clinic he walked to the car and was asking for dinner to we took him to PF Changs because he LOVES the lettuce wraps there. Sadly we had just gotten settled in and ordered our drinks/food when he started projectile vomiting. I felt terrible for him but we got him cleaned up and I gave him some more Zofran hoping that would help. Giving him Zofran is ugly, and involves holding him down (I can't do it alone or I would have taken him to the bathroom). As I was calming him down after giving him the medication I got countless dirty looks from other people, and while I wanted to say something I managed to keep my mouth shut. Unfortunately by the time we left he had thrown up three times and eaten nothing. 
 
 
He sat in his carseat and said nothing the whole way home and I was starting to get worried, but when we got home he seemed more himself although he did vomit while we were undressing him. He took his bath, I gave him more meds, and then he went to bed around 10. Shortly after one he was standing at the side or our bed asking for a paper towel, and he was covered in vomit. He got cleaned up, and got in bed with mommy and daddy where he proceeded to get sick again, but after that he went to sleep and slept until 8. I called him in sick to school because I anticipated he would be sick all day, but surprisingly enough he wasn't sick one time. He was happy, smiling, and playing as usual so we got out to run some errands and enjoy the sunshine. He asked if we could go to lunch, so I very cautiously took him to get lunch and he did awesome. After seeing him feel so great yesterday and today I am thinking he was actually sick with a GI virus because my sister and Lizzy were both sick with that kind of thing on Monday, but we won't know that until his next round of chemo. Today he got up and headed off on the school bus like none of this happened, and for that I am so grateful!
 
Everyone's kind words and prayers over the last few days are more appreciated that I can really put into words. I get teary eyed at times reading everyone comments. Thank you all so much for praying for my sweet boy and our family!

Wednesday, January 14, 2015

Week # 24 (and an upcoming MRI)

 
The last couple weeks have been pretty quiet around our house as it has been too cold to really get out with Brayden and daddy was swabbed and tested positive for the flu. Daddy spent ALL of last week isolated in our basement, and I very much appreciate his willingness to do that for myself as well as for Brayden. Brayden certainly missed him and asked me multiple times "Where is daddy". I simply told him daddy was working and that seemed to suffice no matter what time of day or night it was which was nice, but it was also a little disappointing that  he didn't know otherwise......
 
He has been rocking out his clinic/chemo visits without any problems although it does take longer when you go in the afternoons. When we were going in the morning we would occasionally get in and out in 1.5-2 hours, but now it pretty much takes three hours. He falls asleep more often at clinic now too since he is getting up so early for school, but on non clinic days that means he is back to napping for a bit in the afternoons :) He doesn't want to nap but he is so much sweeter in the evenings if he gets a short nap.
 
 
He seems to be liking school and he LOVES riding the bus. He has been riding each morning and waits anxiously at the door for it to arrive, so starting tomorrow he will be riding both ways. I think he will enjoy it and it is a lot more convenient for this mommy. This school thing is different though, not really getting a report everyday. They send his craft home in his backpack as well as a form where they circle his mood (so far we always get happy) and what he played with (always either trains or cars) and if he played alone or with a friend (always alone). I was hoping for a little more info, but it is what it is I guess. Everyday this week he has told me that he "rode the skywheel" when I ask about school, and when I ask "what else" he says "I don't know". Hopefully we will start making some progress soon with his receptive language..... It's tough because he knows what phrases to use, but it is clear at times that he doesn't understand what he is saying or what is being asked of him.  
 
As far as the potty training, it's not going too well. It's funny to me that when your pregnant other moms warn you about sleepless nights, colic, picky eaters etc, but nobody tells you how terrible the potty training will be. I think it is extra difficult with Brayden because you don't know what he is understanding so you don't know if he understands the expectations. After discussing our last week with our nurse practitioner we have decided to take a step back for a couple of weeks and try to not pressure him. She suggested more books, and more talking with him about the expectations before we try again. She suggested that with his learning disabilities he may just not be ready but she seemed positive we would get there eventually so that is reassuring :)
 
Next Monday Brayden will be having an MRI. This MRI marks the halfway point of this chemo protocol and I have high hopes for good results, but I am also trying to prepare myself for the other possibility. Our MRI 3 months ago didn't necessarily show bad things, but it also didn't show good things so that makes me nervous about the upcoming MRI. The MRI will be Monday morning, but I don't anticipate any results until our appointment on Tuesday although sometimes they do call us that same afternoon. All prayers are greatly appreciated and as always, thank you so much for reading about and praying for our sweet boy!!
 
 


Friday, January 2, 2015

Happy 3rd Birthday! (Week #22)

 
I haven't written a blog since early November and to be honest I don't know where the time has gone. Brayden is doing quite well and his vocabulary is exploding as well as his imagination. He is pretend playing age appropriately and is overall making leaps and bounds with his development.
 
 
We enjoyed Christmas with our happy and healthy Brayden and I can't put into words how grateful I am for those memories. We celebrated his birthday on Sunday (a week early) because I couldn't get off work this weekend and we had an awesome day and Brayden got some awesome presents! For the first time ever, he was excited to open his presents and has been actively playing with all of them.
 
 
His 3rd birthday marks exactly two years ago since we learned he had a brain mass and started our oncology journey. It is amazing to see how far Brayden has come with so many odds stacked against him. I get pretty emotional thinking about the day we got those first MRI results because there were so many unknowns. I had so many fears that day and while I still have some of those same fears a lot of them have changed which I think is good.
 
Currently we are doing a lot of transitioning and we have said goodbye to our friends at the Marion Hope Center as well as our First Steps therapists. It's an exciting yet bittersweet transition because these friends have been with us since the beginning and I am sure we will miss them being in our home from week to week. I am eternally grateful for all of the guidance they have given us over the last 3 years and I know that they have made a huge difference in Brayden's development.
 
 
Brayden's first day of school is on Tuesday and the bus will be here to pick him up shortly after 0730. I was amazed at how many school supplies a 3 year needs for school as there were too many to put in his backpack so I dropped all of his supplies off before Christmas break. I am both excited and anxious for him, and I hope he likes riding the bus as much as I think he will. I am nervous for him because I know how stressful new routines can be and he tends to get overstimulated in new environments with too much going on. I am sure I am just being an overly protective momma but I can't help it. Two years ago I wasn't sure he would be well enough to ever go to school but he has certainly surprised me as well as everyone else. I am sure I will be waiting impatiently  in the parking lot for them to bring him out to the car when school is over at 11 :) Then we will be headed off to clinic which may prove to be interesting because the clinic tends to be pretty busy in the afternoon, but this will be our new routine...... I am excited for Brayden to have more consistency in his daily routine and I am hoping this will allow him to make even more progress developmentally and it will also allow us to (hopefully) tackle potty training as our many attempts have not been successful to date. Wish us luck on that endeavor :)
 
 

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!!!