Saturday, July 25, 2015

Where do I even begin?

 
To be honest, I don't even know where or how to start this blog...... It has been so long since my last blog, and until threeish weeks ago we were all trekking along very well. Sure the chemo protocol we were doing made Brayden pretty sick, but it was only every couple of weeks so it was manageable. Our weekly ultrasounds of Brayden's sister showed she was growing and that my body was doing everything it was supposed to be doing for her that it didn't do for Brayden. Working 12 hour shifts was getting harder as I got more pregnant but it was manageable too.
 
On July 7th, it kind of all fell apart. I knew that the MRI the week before showed some growth, but I wasn't sure what that meant for Brayden......  We started our Tuesday morning as usual at KU for my doctors appointment and ultrasound but I was distracted and anxious to see our oncologist later to view the MRI and discuss Brayden's treatment. Sadly, I didn't made it to that appointment as sister's ultrasound showed that she needed to be delivered. I asked about leaving to go to Brayden's appointment and coming back for sisters delivery (promising to not eat or drink) but everyone felt strongly that her heart rate needed to be monitored closely so I sent Bret and my mom with Brayden to see our oncologist while I got admitted. A big thanks to my sister for coming to keep me company so I wasn't alone. While we were waiting for our scheduled operating room time I was able to video chat with our oncologist, and it was not an easy conversation to have. He said that they weren't going to do anything at Braydens visit, that we could bring him back another day for his IV antibiotic and that we had some decisions to make. The tumor has grown enough that Brayden has failed his third chemo protocol in two and a half years, and as far as other treatment options there are only two option left. Our oncologist didn't seem very excited about either option and said it was completely up to us. To be honest, it seemed as if he is hoping for a better clinical trial to become available but at this point it is unclear if we even have enough tissue left from the original biopsy to enroll in future trials, but I guess that is another problem for another day.
 
For now, the first option is called Temodar and it can be administered and managed here at CMH. It is oral and would be administered on days 1-5 of 28 day cycles. There is evidence that it can be effective BUT it is the least effective option we have tried up to this point, and it is the last "tried and true" treatment option left for Brayden. The other option is a drug called Everolimus and it is a phase 2 clinical trial. This drug has been shown to be effective in treating skin cancer in adults and is now being trialed in children with brain tumors. Unfortunately this drug is only available by going to St Judes in Memphis. It would also be oral and would be administered daily for the next two years. He would likely need to stay in Memphis for the first cycle (28 days) and return for MRI's and physician visits, but labs could be monitored here through CMH.  
 
After weighing our options we have decided to stay here at CMH and try the temodar for three months. I feel like we should try the last treatment with statistics showing it works before moving towards a clinical trial. I also am not sure about uprooting him to Memphis. He would be miserable without his "peoples" and it seems selfish to take him away from everything that he knows and loves so that we might have more time with him. When making decisions about his treatment plan I try to keep things in line with what I would want for myself if I was the one with brain cancer. Maybe this is the right way to think about it, or maybe it isn't but for now it's working for us. I want Brayden to spend his time doing kid things with his friends in an environment that he is comfortable in. He loves going to school and I want him to be able to continue that as well. I want his time to be spent having fun, not being poked and prodded. Not to mention that getting Brayden to take anything orally is a real challenge and I have no idea if I can get him to take the Temodar 5 days out of 28, but I have no idea how I could convince him take something orally everyday. We have built a relationship with his oncology team here and the thought of starting over blindly isn't a reassuring feeling. I know that if the Temodar doesn't work then we will likely have no other choice but to go to Memphis, but at least I will know we exhausted all our other options before enrolling him in a clinical trial.
 
We will be headed back to the oncology clinic on Tuesday for labs and some teaching about safe handling, mixing, and administration. In my mind I naively thought I would be back to taking care of my sweet boy now that his sister has arrived, but since she is breastfeeding I will not be allowed to mix or administer the chemo to ensure her safety. That being said I am taking mawmaw and daddy to the appointment since they will be mixing and administering the chemo. The tentative plan is for Brayden to start it next Saturday so Bret will be home in case it makes him sick.
 
I have a lot of emotions and I am sure the fact that I just had a baby isn't helping as my emotions are all over the place. Since stopping the chemo (his last dose was nearly 5 weeks ago) Brayden has been a completely different kid. He is drinking like a champ, gaining weight, he is less drowsy and more coordinated, and he is making strides in his development. I am hopeful that maybe this chemo won't be too hard on him and that he can enjoy the rest of the summer swimming and playing with his friends. As far as his port, it will be staying in for lab draws and his monthly antibiotic administration. Initially we will be required to take him to the clinic weekly for labs and depending on how he does we may be able to increase the amount of time in between lab draws after the first cycle. I will be holding my breath for our next MRI and praying for my sweet boy.......
Specifically I am asking for prayers that Brayden is able to tolerate the oral chemo without too many side effects and that the tumor responds to the chemo. Thank you to everyone who is praying for our family, we appreciate it so much and we need prayers now more than ever.
 
 
As a side note, Brayden is being an excellent big brother to Adrianna. He tells mommy when she's "really mad and needs some milk" and he has spent hours just staring at her since she made it home. I have also caught him trying to lift her out of the swing and attempting to feed her pretzels which I am sure in his mind is what she wants, but is scary for this mommy. I am so happy that he got to become a big brother and I desperately hope that Brayden will be here for many years so she will have the opportunity to make memories with her brother that she can remember as she gets older.....
 

Monday, March 30, 2015

It's been a long time!

 
Its been 2+ months since my last blog! I'm not sure why I haven't been blogging other than sometimes it seems like I don't have much to say and the blogs get a bit redundant I think. I guess the other reason is that we have just been staying busy, but it has been brought to my attention that people are wondering what's going on with our sweet Brayden!
 
 
Overall Brayden is doing great, and is making huge strides in his language and motor skills since beginning school in January. He loves riding the bus and going to school, and seems disappointed on Fridays that the bus isn't coming to take him to school. He has been sorting/matching like it's easy and reciting nursery rhymes like it's no big deal too! School really has been good for him and I am so grateful that we have that resource available to us.
 
 
He has been spending time with Lizzy and Logan, who he refers to as "his people". We had a fabulous time as Disney on ice a few weeks ago and then we stopped by the auto show. Brayden and Lizzy must have crawled in and out of a dozen cars and I was amazed at just how much more strength he has built up because he is climbing pretty well these days!
 
 
As far as the chemo, it's going reasonably well. We go to clinic every other week for his chemo, and it takes 5-6 hours as a general rule. Sadly he gets a monthly IV antibiotic and I don't know what it is about mixing that particular drug with the chemo but on those weeks he is violently ill. At our last cycle he was actually vomiting before the infusions finished and vomited all the way home even though he had 2 doses of IV Zofran and IV Benadryl. Thankfully on the other weeks he doesn't seem to be sick, just a little over tired. Our next MRI is on April 13th and I am hopeful that this protocol will give us stable results.
 
 
Brayden also got his room redecorated with nothing other than his favorite thing....... Firetrucks!! Somewhere along the way he has turned into a little boy, and now he has his big boy bed to match his big boy personality :)
 
 
In other news, Brayden is very excited about getting a sister. We have been trying to have a sibling for Brayden for nearly three years and it has been a difficult journey, but we did it! He is telling everyone "I'm gonna be a big brother", and every time we walk by her room he says "that's gonna be my sister's room".  I am anticipating her arrival towards the end of July, providing she doesn't need to come out early. They are monitoring her and I much closer than they did when I was pregnant with Brayden and so far things look great! I just hope he will be as excited to meet her when she arrives as he is now!
 
My mom found this picture of me from when I was little......
 
 
It is amazing how much Brayden and I look alike. It seriously looks like we dressed Brayden in pink but that's really me! We head back to clinic tomorrow after school for his next round of chemo..... As always thank you to everyone who is reading about, thinking about, and praying for Brayden!

Friday, March 27, 2015

Omaha fundraiser

 
 
Braydens 3rd annual fundraiser in the Omaha area is approaching fast! A big thank you goes out to everyone who is working hard to get this organized, Brayden is looking forward to seeing everyone!

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!