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!
 


Wednesday, April 2, 2014

Upcoming MRI

I wanted to start this blog by thanking everyone who came out yesterday to meet and support Brayden, and to also thank my coworkers for their ongoing support :) Over the last year my coworkers have been so supportive, and many of them have gone above and beyond to help us along the way. They did an awesome job yesterday serving tacos and selling baked goods, and one of them even made this awesome cake!
 
Brayden did awesome greeting everyone and he gave tons of high fives (but not until he ate his taco)!
 
And he did well for the first couple of hours but then he had had enough
He is doing so well right now and I can not express how grateful I am for that. We have been blessed with this time of stability and I am reminded of that blessing when I read about other kids with pediatric cancer.....
 
I have been following a little boy named Ben, who you can read about here if you like:
This little boy is 4 years old and in January he was taken to the ER for headaches and they found a tumor. He had a tumor resection (brain surgery) and completed some radiation in February. On March 3rd he had an MRI that showed that the tumor had tripled in size. The parents were told to take their little boy home and keep him comfortable for the weeks (not months) that they had left with him because there were no other treatment options.
 
This scenario is something that I think about sometimes, but I think about it most often before upcoming scans. MRI's instill me with fear because I always wonder if this will be the MRI that shows growth. Brayden's next MRI is on April 15th, and the nearer to that day we get the more scared I become. While I know that MRI's are an opportunity for reassurance of tumor stability, I also know that they are an opportunity for my worst fears to be realized. I know that Brayden is not in "remission"; he is just on a "chemo vacation". I desperately hope that this vacation will last forever, but I know it is likely to end at some point. Normally when I find myself thinking about this I push it to the back of my mind, but I thought today it might be good to "put it out there", so thanks for reading :)
 
On a happier and more exciting note, I heard back from the Mother's day out program Brayden went to last week and they said he CAN come back tomorrow!!!

Thursday, March 27, 2014

Doing awesome!

 
It was brought to my attention a couple of days that it has been a long time since my last blog, and when I looked back it has been three weeks since I last updated here! Sorry for that :) We appreciate every person that is reading about, following, and praying for Brayden so much! I really haven't updated because there isn't too much going on with Brayden and he is doing awesome!
 
Over the last few weeks, we have been enjoying the nice days here and there.....
and on the cooler days we have been staying busy too....
 
Follow the yellow brick road
 
There are slides on the way to see the wicked witch!
 
Working the Wizard of Oz booth!
We have been having fun and enjoying our healthy Brayden! I am so grateful for this time with him. We did still have to do a couple of "unfun" things, but his appointment schedule has been VERY light the last few weeks.
 
He got fitted for his new braces..... we get them April 22nd!
 
He had his dental surgery and can now actually bite things and eat ice cream! Totally worth it!!
 
Brayden has been doing awesome with his speech and gross motor skills. He is now able to transition from sitting to standing without using an object to "pull up". His speech continues to explode and he is nearly on track with his adjusted age in the speech category!  In true toddler fashion he has learned some things I am not crazy about, but the one thing I am grateful for is that he doesn't tell me "no". He says the same things I say to him: don't or uhhuhh. He can pretty much verbalize what he wants and we are now working on the articulation of those things. He calls a cat a tat, his coat a toat, a pig a gig, and etc. He keeps putting the consonant that is at the end of the word on the front. Our speech therapist reassured me this is a normal step in his development and that he will grow out of it. One year ago we wondered if he would learn to talk, and our therapists were working with him using alternative forms of communication. It is amazing to look at how far he has come :)

He has started going to a two hour developmental group on Mondays, and he is LOVING it. He does a craft, plays with the other kids, and works with the speech therapist. He has been enjoying it so much I decided it was time to think about getting him in somewhere to spend more time with other kids. That being said, he started at a mothers day out program today at one of our local churches. Its from 9:30 to 3 and the plan is to just go on Thursdays for now. The church seemed a little apprehensive about his history and suggested a "trial run" for today to make sure he did okay before actually enrolling him. His teacher said he did awesome today. He played well with the other kids, ate his lunch, and he even napped on his little folding mat. I was so relieved he did well, but then the director approached me and said he couldn't come back until she heard back from their insurance company. Apparently they feel like he may be too much of a "liability" because of his brain tumor. She explained to me that his teacher was only CPR certified and that if he fell, hit his head, and had a seizure she wasn't sure what that would mean. I am hoping this is all just red tape and he will be allowed to go back next week because he had fun. Brayden's safety is my first priority, but he has had no seizures and has no real medical needs at this point, so I am a little fuzzy on why there are so many concerns. If there were legitimate concerns about seizures than I would not be trying to enroll him anywhere.
If they decide he can't go back I will be on the phone advocating for Brayden with another place so he can go and play with other kids. I know I could take him to a group play date, but he plays better with others when I am not there. I just want him to have the same opportunities as all of the other children and I have been adamant about not letting his tumor define him and that is not changing, at least not now :)

On Tuesday (4/1)  my Unit 62 family is hosting another fundraiser at KU! They will be selling tacos and baked goods again this year and for those of you KU peeps who missed out last year, the tacos were delicious!! Brayden will be there as usual saying hello!

Thursday, March 6, 2014

One year anniversary

A very tired little man after school today
Since Brayden had his port removal surgery I am excited to report we have only had normal kid problems! His port site looks great and he is back to taking regular baths. He is getting over a cold, and finally got some oral medication to help his diaper rash, so from a health perspective he is doing awesome!
 
 
Sunday evening we attempted to convert his toddler bed because he is making me increasingly nervous leaning over the crib rails to try and reach whatever he tossed out before going to sleep. Sunday night he did awesome, went to sleep with zero fussing and slept until 0730. Unfortunately he did not do so well Monday for his nap. I saw him stand up on the baby monitor and I tried to race to his room and save him before he fell out but as I reached for his door knob I heard the thud. Thankfully he sustained no injuries and just scared himself. His crib was reassembled immediately and we will try again in a couple months.
 
In other news, Brayden had his annual first steps (early intervention therapists that see us at home)meeting. During this meeting we looked at the goals we set 6 months ago, and I am pleased to say that most of them were met! We developed new goals for the next six months and discussed how he would achieve those new goals. It was decided (after much pushing from this momma) that Brayden will be moving out of his one hour group therapy class into a two hour class. He loves going to class and has really started thriving since starting at Marian Hope. He will also be ditching his current braces for some less restrictive ones. He is close to outgrowing his current braces and their is some question about whether his current braces are holding him back by not allowing him enough movement. I was hoping for just some shoe inserts but he still needs more support that that. Here is his current style:
 
DAFO 4 Softy
 
Here is the less restrictive style he will be getting soon:
SMO
 
At first glance they look similar, but the new braces will allow more movement because they do not cover the entire sole of the foot. Hopefully these new braces will give him more movement which will allow him to stand on his toes and maybe learn to jump! They look a lot less bulky so I am hoping shoes will be easier to find and will be less expensive.
 
All in all, Mr Brayden is definitely moving in the right direction and he is gaining momentum. His language is exploding right now and he is able to follow so many more simple directions! His physical development has stalled a bit and I am hoping the new braces will help with some.
  

 Getting ready for port insertion a year ago.....
Yesterday was Brayden's one year anniversary since receiving his official cancer diagnosis. When I look at the picture above I am amazed at how far Brayden has come! Its hard to believe an entire year has passed since we met Dr G and the wonderful staff at the CMH Oncology clinic. When I really stop and think back to that day I still get pretty emotional. That day certainly went down in the record books for one of the hardest days I have ever lived through. That day I was forced to realize and accept one the worst fears a parent could ever have and I wondered how Brayden's diagnosis would change our lives because there was no denying the huge impact it would have. There is no doubt that our lives are forever changed by the events of the last year, but I feel like we have found a good balance between having fun and being responsible. My current fears are different than the fears I had a year ago, and the things that seemed so important a year ago hardly matter now. I don't worry as much as I used to about how long we will have Brayden with us because I know that every day that we have with Brayden is sort of a miracle in itself and I am grateful for every day we get to spend with him. After all, the amount of time we will have with Brayden isn't really up to us and while it was difficult, I have accepted that. Brayden gives me more strength than I could have ever imagined having when this journey began, and his smiles and giggles are infectious and sometimes they are just what I need. He is such a happy kid even after all the things he has been through! From the bottom of our hearts, thank you to everyone who has supported us along the way and prayed for Brayden over the last year!
 
 
 

Tuesday, February 25, 2014

Bye Bye Port!

 
 
Knowing Brayden would have a rough day today we decided to do something fun before Brayden's surgery. Yesterday he spent the morning with his auntie and in the afternoon we took Brayden to the aquarium here in KC and he had a blast! I was reminded why I work weekends when we arrived to find that we basically had the aquarium to ourselves. Brayden walked all over constantly pointing and saying "oohh". He went through the exhibit pretty quick but it was completely worth the drive.
 
 
Since we were downtown we went to dinner as well, but as you can see, Brayden was too tired to enjoy it :) In true Brayden fashion, there was very little fussing and he just put his head down and went to sleep.
 
 
This morning he got woken up a little after 5 and was immediately strapped into his car seat and headed to CMH. He was not super impressed and said over and over "I want drink" the ENTIRE way, but he did okay overall.
 
 
When we got there he kept going back to the door of the waiting room, but thankfully we were the only ones there and he couldn't open the door. They called us back and did his vitals and got his weight. According to their scale he has lost a couple of pounds, but I am hoping its just a difference in scales from clinic to clinic.  
 
She numbed his little wrist with some kind of CO2 cartridge I have never seen, but it worked like a charm. One nurse stuck and another basically laid on top of him for the stick but he didn't cry or wince during the IV insertion. She was able to get the required labs from the same stick as well. WHEW! It was by far our best peripheral IV insertion experience in the last 14 months.
 
 
He (of course) began to IMMEDIATELY pull and pick at the arm board trying to take it off so he got some more tape and a wrap.
 
 
Anesthesia got called away to an emergent case so they were running a tad behind, but nothing too terrible. This is where I was grateful we were the first case today because each case is going to be starting later and later. We signed all or our consents and Brayden got to pick a prize for being so brave for the arm poke and he of course picked a hot wheels. He rolled his car with daddy for a bit, and then we played with bubbles, and then he was just done so we cuddled. Sometimes these cuddles in clinic or procedural areas are the best ones because he enjoys them more :) At home he always has something he wants to play with or he just wants to run around.
 
 
They took him back around 0830 (after giving him some versed to help him separate from us easily)and we went to the very familiar waiting room. I watched an hour of TV patiently and then the minutes began ticking away VERY slowly. Eventually the nurse came to get us and he was starting to wake up. He was pretty out of it but said "drink" repeatedly so I gave him his cup. He guzzled an entire cup his favorite crystal light and we headed for the car.  
 
 
 
On our way there he starting crying uncontrollably and saying "drink" so we stopped by the cafeteria for something for his cup. The cafeteria was closed so we went by the little shop next to it. They had very few choices of non carbonated things so I settled on some orange juice mixed with water but I was irritated because the poor guy had a rough morning and I just wanted to get him something I knew he would like. I understand the "no sugary drinks rule" but I truly think parents should get to decide what their children drink. Sugary drinks are sometimes just what a child needs, and they are fine in moderation when mixed with water!
 
He didn't eat much breakfast and spent the majority of the day sleeping. We went out to dinner tonight and his appetite has returned. As I type this blog he is running circles around the house with his popper, chatting with himself, and stopping for an occasional jelly bean from his dispenser. I am relieved to see he has recovered from the anesthetic and is still my Brayden! The next few evenings will be a tiny bit rough because he LOVES his bath and he is only allowed sponge baths for the next 3 days, but that will just make Friday evening that much sweeter for him :) Thanks so much for all the prayers today, we needed them for sure!

Wednesday, February 19, 2014

Upcoming procedures

 
Since our very long and rough day at CMH last week, things are looking up for Brayden! He did spike temperatures off and on all last week and looked pretty pitiful, but on Friday he was looking better! At this point no one really knows why he spiked those temperatures, but I am just relieved he is better. He unfortunately has a pretty stubborn diaper rash that started over the weekend, and our pediatrician is thinking it could be yeast, or that it could be strep. We started some topical antifungal yesterday so I am hoping it will look better tomorrow, but I am anticipating a trip to the doc if it is still looking worse.
 
After much discussion with a CMH dentist, it has been determined that Brayden will have 4 (yes that's right 4) teeth capped on March 20th. This dentist feels like the two front teeth definitely need to be capped and she has a strong feeling that the teeth next to those would likely need to be capped in the future as they have some abnormalities as well. That being said, she is going to do all 4 at once so he will not have to have anesthesia again for the same issue. I am so relieved  to finally have Brayden on an operating room schedule so we can get issue resolved! I guess that will teach me to try and do anything anywhere but at CMH. Unfortunately, the port needs to come out sooner than March 20th so Brayden is on the schedule for that this coming Tuesday. He will need to arrive in radiology by 6, and while that is early, I prefer it that way because he won't be hungry yet. Surgery times later in the day make him (and I) cranky because he doesn't understand not being able to eat or drink. I am of course nervous about the anesthesia and the breathing tube/ventilator but I think that's natural. He normally does well with anesthesia, and I am praying that these two surgeries are just minor bumps in the road for us.
 
On a completely different note, there have been several families that I follow here in KC that have received some less than great news, and some other children that have recently earned their wings. Our thoughts are with all of those families and it makes me even more grateful for this time with Brayden. For those of you have been following for a while know that sometime during the beginning of this journey I was encouraged by multiple people to develop a good relationship with God. I embraced that advice and we went to multiple churches trying to find the one that was right for us. Unfortunately I began working every weekend so we never became members of a specific church. Since that time I have worked at developing my relationship with God and I have found some comfort in that. That being said, people say things about how we were picked by Him to be on this journey and I know people are trying to comfort us which I appreciate so much......
But to be clear I do NOT believe that. I do not believe that He decided Brayden needed to be born prematurely, nor do I believe that He gave Brayden an inoperable brain tumor. I believe that he saved Brayden the day he was born and I believe that he is helping guide us down this path. I just cannot believe that He is solely responsible for giving children terminal diseases, and while some may not agree, that's what I believe......
 

Tuesday, February 11, 2014

One Rough Day!

 
When we left he house this morning, our plan was to swing by the oncology clinic for a quick port access/flush and then head somewhere for a fun lunch before going back to the hospital to meet with anesthesia. Unfortunately the day did not work out as planned and we spent the ENTIRE day at the hospital.
 
When we arrived to clinic around 10 it was business as usual. They got Braydens vital signs and I noted that his heart rate was a little high but didn't think too much about it because all of his other numbers looked good. After accessing his port it would not draw back blood, so they put some medicine in it to help. After letting that medicine sit in the line for the maximum amount of time it was decided to pull the needle out and reaccess the port to see if that would help. Unfortunately it didn't help and it was decided Brayden needed a "line study" in interventional radiology, but it was almost 1 so we needed to head to our appointment with anesthesia. We left with an accessed Brayden and strict instructions to come back to the clinic after our anesthesia appointment.
 
 
When we arrived in the next clinic we didn't wait too long and the nurse was kind enough to get Brayden some goldfish crackers and juice as he hadn't had lunch yet. As he drank his juice and at his crackers I talked with anesthesia and answered "no" to all of their questions. Anesthesia said he looked great, but that on paper he was a "huge risk" so he will only be allowed to have procedures at the downtown location. They explained that south doesn't have an ICU so their concern is what would happen if he has complications. In my mind I wondered what would happen if a "healthy child" had complications at south but I kept my mouth shut :) As I gathered up our things to go back to oncology I wondered why they had us come in if the answer was "no" based on what is on paper. I felt like everyone's time was wasted during this appointment.
 
 
I called the oncology clinic to see if we had time for lunch before the line study because it was after 2, and I was sure Brayden was hungry for real food and needed a break. They said the study would be around three so we went by the cafeteria and had lunch before going back to oncology. When we got back, we settled back in and then the phone rang saying interventional radiology was ready for him. We headed back through security to the hospital side and got checked into radiology. They came and got us pretty quickly and did his study which consisted of injecting dye into his port and taking pictures of where the dye goes. Bret was the lucky dad who had to lay Brayden on the table to get tied down, and then they sent us to the hallway.
 
 
It broke my heart because I could hear him crying "momma daddy" through the door. A few minutes later they came and got us to show us the pictures. There is a "fibrin sheeth" which is basically a huge blood clot at the end of the line, and the radiologist said the clot buster didn't work because of the way the clot is positioned, and that we basically had three options: Exchange the port for a new one, try and strip the clot away, or simply take it out, but that decision would be up to our oncologist.
 
We headed back to oncology to see what they wanted to do. As Brayden and I settled back into that familiar recliner, I thought he felt warm so the nurse took his temperature and he had in fact spiked a temperature on us. At that moment it was decided that Brayden needed to be poked for labs and blood cultures to be safe, and Brayden was less than impressed!
 
 
After getting the labs, an IV antibiotic was ordered and as we waited for it to come up from pharmacy we talked to Dr G about the port. At this point, Brayden does not really need the port, and since it will not draw back blood it's useless to us. That means that it is simply an infection risk, so it will be removed in the coming weeks under general anesthesia. I am wondering if we could take the port out and get Brayden's teeth fixed at the same time, but I am guessing that will not be possible.
I am disappointed that the port is misbehaving, but I am also sort of relieved it is coming out because that means that we won't have to worry every time he gets a fever. He will be able to swim in freshwater, and take Tylenol again which will be nice!
 
 
To say that Brayden had a rough day would not be accurate. That poor kid was stuck 3 times, and tied down twice. Days like this are tough because it is so hard to watch him cry because they are hurting him. It just makes you feel so helpless. Brayden is certainly not himself this evening as he refused to eat, take his medicine, or drink his milk. I am hoping my little man will be back tomorrow, although we do have a dentist appointment back at the CMH clinic in the afternoon.......