Tuesday, March 8, 2016

Do I tell him?

 
We had our appointment this morning regarding our options about how to best proceed with treatment for Brayden, and as usual, it's a real tear jerker. We were presented with four options:
 
Option 1: Medicate Brayden with 4 different oral medications that there is "some science" behind after studying the biochemical make-up of the tissue sample. He will have to swallow them willingly, and 2 of them are twice a day. (It might make his skin fall off and make him sleep a lot).
 
Option 2: Set him up for radiation. Radiation will require Brayden to have general anesthesia Monday-Friday for 6 weeks. (The effects on our sweet boy might be catastrophic).
 
Option 3: Dose with him very strong chemotherapy agents IV that will require him to be hospitalized for weekish long stretches (they will likely make him very sick).
 
Option 4: Do nothing
 
I honestly think all of these options stink, but we have to pick something. My mom asked the dreaded "how long do we have" question, and the response of "6-9 months" took my breath away. I can't imagine how a little boy who looks so good and is still learning new things can be predicted to only live such a short time longer, but I am no oncologist and so far Dr G has not guided us down any wrong paths. When I asked him what he would do if Brayden was his little boy he said "It would be a tough decision". Knowing that he wouldn't completely rule out radiation for his own child, I have agreed to meet with the radiation department at children's for some fact finding. I imagine they won't change my outlook, but we will see. The nearest proton radiation center is in St. Louis and based on my own research, that seems like the best kind of radiation.
 
In the meantime, I have no interest in torturing Brayden with hospital admissions and making him too sick to enjoy life for a series of IV medications that will only buy us a short amount of time, so I marked option #3 off the list. I considered option #4 of doing nothing for quite some time, but what if the oral combo of medications works and it doesn't affect his quality of life? So, I landed on option #1. We will start these medications and meet with radiation oncology at some point to see if that's an avenue we want to further explore. This combination of medications has a huge potential for some life altering side effects, so we will stop/alter the trial at any signs of those. Two of the medications have small risk for something called "Stevens Johnson syndrome" which is a serious disorder where the skin basically falls off the body. The small risk will be slightly increased because two of the medications list it as a potential side effect. This means we will need to assess Brayden's skin meticulously each day and stop the medications at any sign of skin changes. Two of the medications are being used off label and are normally prescribed for seizures. They both have sedating effects and can also affect the way a healthy heart conducts electricity (For my nurse friends, it can prolong his QTC). This means he will no longer be allowed Zofran for nausea, but also no Phenergan because it can be sedating. Pain management may also be an issue since he can't chase these sedating meds with oxycodone so I am not sure about the logistics of it all. He will have an echo and an ECG next week before beginning any medications. We are still trying to get these meds covered through insurance because one of them is like six thousand dollars...... Let's also keep in mind he will need to swallow these medications.  They say they don't taste bad and that we can hide them but I am not sure. Ethically it is really wrong to surgically place a tube in his belly for only medicine, so if he won't swallow the meds than this treatment will be off the table. The medication doses/frequency can be adjusted based on his symptoms/quality of life. This is what I think matters most because I would rather keep him for 6 good months and say goodbye to Brayden as we know him now versus watching him suffer for a year.  
 
So the real question is this: How much do you tell a happy four year old about brain cancer and what his future holds? How do you even go about preparing such a sweet and innocent soul for what is going to happen to him? I have never really thought about sharing more than I need to with him about his diagnosis, but it looks like it may be time to start talking about it??? How do you prepare the little people in his life to lose him? Most importantly, how do I prepare myself for all of this?? I don't know if I have a brave enough face for all of this........

Wednesday, March 2, 2016

Life update!

 
 
 
I'm happy to report that today marks just over three weeks since Brayden's surgery, and he has very few deficits following his surgery! His vision and balance issues that we saw immediately post op have corrected themselves or he is compensating and I just can't tell, but either way he looks awesome. He is back at school with his friends during the week and doing fun things with his people on the weekend! He is back to being our easy going and fun loving sweet boy. I guess he really is a superhero......
 
 
The surgery was a success in the sense that the surgeon was able to get the required amount of tissue and he left my sweet boys personality completely intact. As far as the brain tumor, it has been decided (based on pathology) that it is significantly more aggressive now than it was three years ago, and at this point we aren't sure what that will mean for his future. His tumor used to be a grade II tumor, which meant it was low grade and likely benign (not cancer), but now it is a grade III and likely malignant (cancer). I guess it is normal for tumors to progress through the scale, which means at some point may progress to a grade IV. Sadly the best treatment for grade III-IV tumors is radiation but Brayden isn't a candidate due to the location of his tumor and his young age. We have an appointment Tuesday morning to hear about what the recommendations are from the tumor board as far as treatment, and I am nervous to hear what they have to say. It is unclear at this point if there are any medications that will be effective but time will tell. Neurosurgery has scheduled an MRI for 90 days post op and they suggested we be should be prepared to see growth, but they are hopeful that won't be the case. In the meantime, we will continue to focus on doing fun things with Brayden and taking it one day at a time. This weekend he will be going to a train hobby show with his people and I am sure he will have great time. These are the moments that I am sad I work weekends because I always miss out on these kinds of activities, but I am so grateful that my parents are willing to take him while I work.
 
 

Given the biopsy results, I decided it was probably time for Brayden to make his wish. We met our awesome wish granters through "make a wish" and Brayden loved them! They brought him a battery powered "Gordan" train, and they became fast friends with Brayden. After a lot of discussion, and trying to get Brayden to verbalize what he wanted his wish to be, it has been decided that Brayden wishes "to go to Disneyworld with his people". It sounds like they are going to let Lizzy join us since his sister isn't old enough to really be a companion for Brayden and I am sure they will both be thrilled about it. After all, what 4 year old doesn't dream about going to Disney in VIP style?  I don't have any details about when this will happen yet, but I am only allowed to travel through the end of April given my high risk pregnancy history. I am hopeful we can get it coordinated before then because if not it will have to wait until late summer and I am not sure how Brayden will look clinically at that time.
 
I want to thank everyone who has donated to the gofundme page that my mom set up! There has been an overwhelming amount of people donate and I am so grateful. I also want to thank the Elkettes for their generous donation too! I couldn't be doing this without help and I am so appreciative of everyone's support for my sweet boy. As always, thank you for following my sweet boy and praying for our family!! 

Monday, January 25, 2016

The good, the bad, the ugly, and Braydens big surgery.






I haven't been blogging at all recently and to be honest I just have not had time but we have LOTS of news. Some good, some bad, and some ugly......

 Let's start with some good news! If you look closely at the picture above you will see that Brayden is holding an ultrasound photo! How it is possible that we are expecting ANOTHER sister is beyond me because we struggled very hard to get our sweet Adrianna. The circumstances are not ideal, but I believe a baby is a blessing no matter the circumstances and we are anxiously waiting her arrival sometime in June.

Now the bad news, Bret and I have separated. Our marriage has become more and more fragile over time and let's be honest, it has endured a lot in it's 7 years. This journey has affected us in so many ways and while I really don't want to get into the specifics, I will say this; I have tried my hardest to make the best out of Brayden's diagnosis and treat everyday we get to spend with  him like a gift. My number one goal, has always been to log as many fun days with my sweet boy as possible and as most of you know, Brayden's laugh is contagious. His smile makes my heart happy which in turn keeps me in a good place. Unfortunately, Brayden's Dad has chosen to cope differently over the last few years and it is no longer something I can deal with or spend precious time worrying about. I still care about him and wish him the best but the time has come to go our separate ways. I'm sure there will be trying days, but overall I know this is the right decision and I am hopeful that Bret and I can co-parent these three kiddos effectively. 

The above photo is the ugly news. The MRI results we received on Tuesday were heartbreaking as many of you already know. The top picture shows our most recent MRI and the bottom is from 3 months ago. This means that Brayden's chemo has been stopped and he was awarded a neurosurgery appointment to which we went to this morning. This mornings appointment was tough. We discussed the following options and had a very real conversation about the pros and cons of each of these options. Here are the basics of each option:

1. Do nothing until the symptoms begin to show. There is no definitive answer as to when the tumor will grow enough to cause symptoms or how that could complicate a future surgery.

2. Use an endoscope and needle to drain the cysts and not obtain the biopsy required for the clinical trial. Minimal recovery and minimal risks.

3. Have major neurosurgery allowing the cysts to be removed with an 80% chance or getting the 200 grams of tissue required for the clinical trial. This option will not cure him as it is impossible to get to all of the tumor without harming him and it comes with a fairly extensive recovery and more risks.

After a lot of discussion, some tears, and more discussion, I selected option #3. I feel like option one is temporary and not a good plan, and I feel like with option two we aren't really gaining anything. Yes, the third option is the most risky, but at this point I feel like I owe it to Brayden to try at least try. After our extensive discussion with the surgeon I feel confident if he doesn't feel like he can debulk enough tissue safely for the trial then he will stop. I made my goals very clear about quality of life vs quantity of life and I think he understands the ultimate goal and he will stop cutting at the right time. He said that there is a significant chance Brayden's left leg will be weaker when he wakes up, but that should be temporary. The advantage of this option is that the area of question that we will be debulking is an area that has been thought previously to be a higher grade, and this is the part of the tumor that hasn't responded well to the chemotherapy. That means that getting some information about this area could be very helpful in trying to treat Brayden. On some level this feels like a 4th quarter hail mary, but I do not want to have regrets about not doing this. If the day comes that Brayden loses his battle with his brain tumor I want to know that we did everything that we could (within reason at least). The surgeon said he may have deficits immediately post op related to his left side but that when he wakes up he will still be my sweet boy and that his mind will be unaffected. I sure hope he's right...... 

Brayden will have another MRI on 2/8 and the surgery will take place on the 2/9. The surgery is anticipated to take 6+ hours and I am sure it will be the longest 6 hours of my life.  He will likely have an external ventricular drain to allow the excess fluid and blood from the surgery to escape. He will go to ICU for at least 24 hours and then stay inpatient for a total of a week. I am not looking forward to seeing him in the ICU again but I know it's part of the journey. As a distraction I'm going to keep doing as much fun stuff with Brayden and continuing to do what we do. As always thanks for reading about and praying for my sweet boy!!!



Wednesday, October 21, 2015

Not the results we were hoping for......

 
We met with out oncology team yesterday afternoon and the MRI did not show anything good. There are significant changes noted so it has been determined that Braydens relationship with oral Temodar is over. We started our oncology journey in March of 2013, and in the last thirty months Brayden has tried the following protocols:
 
Carboplatin/Vincristine (allergic reaction to Carboplatin)
Vinblastine (didn't work)
Avastin/Irineotecan (didn't work)
Temozolomide (didn't work)
 
Keep in mind that each of these protocols are supposed to last for a year if the child sees a response or stability so it is pretty astonishing that we have already been through all of these. That being said, today marks the preparation to start a new protocol, and to be honest I didn't even know this one existed. It was not offered to us three months ago because we had just had Brayden's sister and our team though it might be too much to handle (and they may have been right). It is called TPCV and our team has only used it in a few children at CMH. My family has asked several times if it worked in those children but I didn't ask and to be honest I don't want to know. This protocol is a combination of 3 drugs (Procarbazine, Lomustine, Thioganine) that will need to go down his NG tube and one IV medication (Vincristine) that we have taken before. A combination of those oral drugs will be administered every 6 hours (6AM, Noon, 6PM, and mindnight) down his NG tube on days 1-4. He will need a nausea medication one hour before the medication on day 3 (5AM, 11AM, 5PM, and 11PM). Then on days 14, and 28 he will to clinic to receive the IV Vincristine. The cycle length will be 42 days long and it will likely take his counts that long to recover. I do not know yet what the schedule will be for checking his labs. As for the side effects, the team suggests by day 3 he will be pretty nauseous but hopefully our cocktail of nausea medications will combat this. As for all chemo, he will be at an increased risk of infection as his counts drop, and one of the drugs tends to affect platelets pretty significantly so his bleeding times may be affected. When he took the vincristine before he was too little to tell us much but he was pretty fussy so I wonder if he will have the nerve pain that is associated with this drug. Another risk that was discussed is that all of the drugs Brayden has been exposed to is likely increasing his risk of contracting a secondary cancer. In my mind this sounds scarier than it actually is because the other choice is to do nothing. Don't get me wrong, I have thought about withdrawing treatment, and that is a decision that we will be forced to make someday, but as long as the treatments don't affect Brayden's quality of life than I see no reason to stop. Currently our NP is attempting to locate these medications and get a timeline for obtaining them as they will likely have to be orders so I don't have a start date yet. He will have another MRI in two cycles (3 months) to see if he the tumor is responding or not.
 
Overall the discussion with our team yesterday was tough. I was fairly prepared for it though, because I keep finding myself thinking "Nothing has worked yet, so why would this particular one work". I know that thought is beyond pessimistic but I think it's one of my coping mechanisms. I have lived my life always thinking:
 
Image result for hope for the best, prepare for the worst quote
 
During our chat yesterday we discussed radiation therapy and Dr G shared that he didn't think it was a good plan. I was relieved to hear him say that because I would never even consider doing that to Brayden. Due to the tumor size, location in the midbrain, and Braydens young age, the effects of radiation would likely be catastrophic. He would likely only be a shell of the happy and sweet little boy he is today. I guess maybe he would "survive" but that isn't how I am measuring success. I wouldn't do that to myself and I won't do it to him so I am relieved that our team feels the same way. After that we discussed that this protocol is likely the last option without going down the experimental drug avenue and I am not sure if we will choose to do that or not. It will depend on the location of the trial, the phase of the trial, and how Brayden looks clinically when we get to that point. There is currently a trial here at CMH but Brayden can't do it because it requires him to be able to swallow a capsule for 21 days consecutively. They are discussing opening the trial to liquid administration but that hasn't happened yet. This may be our next avenue if they open it to liquid administration but it would require Brayden to have a feeding tube placed surgically. It would look something like one of these with the pink line being his stomach wall, meaning the balloon would be inside his stomach to hold it in place and the cap would outside his skin.
 
 
 
The advantage to this vs a traditional tube is that kiddos are allowed to submerge it in clean water so he could still take baths and go to the water park. I hate to put him through that and to be quite honest I don't know if I could actually do that to him, but I guess time will tell. In the interim we will continue pushing forward as we always do. We will try the TPCV and continue to make each day about letting Brayden do as many fun things as possible in his short life while we keep showing and telling him how much we love him. I meant what I wrote on my last blog; every day we get to spend with our sweet boy truly is a remarkable gift. He is happy and so full of life so I will choose to follow in his footsteps.
 
 
I have had an overwhelming number of people reach out to us after yesterdays news and I want to thank everyone for supporting us as we continue this journey. I am sure at some point we will need help, but for now we are doing okay. Brayden has many kind people in his life and for that we are so grateful. We couldn't do this without the support we receive from the people around him. A special thank you to his sweet teacher and her coworkers at the ECC as well as to the kind staff at the clinic who have taken a real interest in Brayden and always welcome him back to the clinic and do their very best to make it fun for him. Another big thank you also goes to everyone who has helped along the way with our sweet Adrianna so we can give Brayden our full attention when necessary. She is turning into quite the social little thing making her way around. As always thank you so much for reading about, thinking about, and praying for our sweet boy!
 

Wednesday, September 30, 2015

What it's really like

 
As childhood cancer awareness month comes to a close, I wanted to take a minute and share a little bit about what our life with cancer is really like.....
 
Nearly three years ago our world was turned upside down with the single statement "Your child has an inoperable brain tumor and there is a 40% chance he will live five years from today". I can not put into words what I felt in that moment aside from saying that I felt fear, anger, and disbelief in a way I never thought was possible. That simple statement by our oncologist changed our lives in more ways than I could have ever dreamed. I have heard "I don't know how you do it" more times in the last three years than I can count and I always answer the same way: "What is the other choice". I decided long ago that I would not let this experience define us. I will not allow Brayden's diagnosis to affect his life in a negative way. We get up each day, no matter whether it's a clinic day, MRI day, or just a fun day, with the same outlook. It is a blessing to be living this life with Brayden and he is happy so I choose to follow in his footsteps. Sure, some days it is extremely difficult to put one foot in front of the other and smile your way through the bad things but it is what it is. I can not put into words how difficult it is to listen to your 3 year old scream and cry through a clinic door while some  poor nurse has to push a tube down his throat, but while it's happening all you can do is take a breath and know that when its over you can cuddle Brayden and then take him to do something fun. That all being said, we go through the routines of our daily life mostly with genuine smiles, but sometimes it is with forced enthusiasm. While I wish cancer wasn't a member of our family it is, and we can't return it, ignore it or forget about it.
 
 
We have done our very best to fill Brayden's life with love and fun experiences. Sometimes I know we let him do things we probably shouldn't but his smiles are contagious. Brayden loves riding with his Paw Paw on his motorcycle even though he never goes beyond the streets of the neighborhood. Brayden loved the beach, he loves swimming, and he loves to go on carnival rides. 
We have been to a fall city fair every weekend since labor day for the rides. Most of our time is spent putting as much fun as possible in his little life. 
 
 
My dad (pawpaw) is Brayden’s hero, and my parents are affected by this journey as well. They are always there for us and help us find the balance for Brayden. They watch Brayden while I work and Brayden calls there house home too. Brayden has learned on Fridays he gets to go ride the school bus with my mom (mawmaw) and then he gets to spend the weekend with my parents while I work. I am so grateful to have them in our lives because they help so much and put my mind at ease about leaving Brayden.
 
No matter how I choose to be happy and enjoy Brayden, sometimes the fear and anxiety take over. I worry about how all these things will affect our family. Brayden is developing anxiety about going to the clinic, and it's hard to watch him cry as we get off on the highway exit to get to the hospital. I worry about how all of this will affect our sweet baby girl. She has been left at home with someone else multiple times so I can go to clinic with Brayden, or take him to the waterpark, and tomorrow she will likely get left with someone else so I can go on a fieldtrip with Brayden's class. That being said, she has also already spent many Tuesday afternoons at clinic being held by the nurses during Brayden's port access. I know she is too little to understand but I worry about how these things will affect her a she gets older. Will she think we love her less because Brayden requires so much attention?
 
 
These days Brayden is doing great. If you look at him he seems like any other kid his age. He’s happy, he loves school, his people (my sister and her family), snuggling while watching monster trucks, and he loves to eat!
 
On July 7th 2015, we learned that the 4th chemo regimen was not working as the MRI showed tumor growth so we stopped that treatment. Sadly this was also that day our sweet babygirl was born and I had that conversation with our oncologist via facetime while I was in pre-op. Brayden loves having a sister, but he is so disappointed that she is not able to walk or play trains yet.  The other dislike he has is when his paw paw is holding her, and Brayden tells my dad "that his mommy can hold her", or just goes off by himself. This weekend is my first weekend back to work since she was born and I am interested to see how he does sharing his pawpaw.
 
After a lot of weighing options, we started Brayden's fifth treatment on August 3rd. The treatment is oral and he refuses to take it so it's given via a tube pushed into his nose down his throat and into his stomach. At this time, this is the last chemo regiment that is available for Brayden. Our next MRI is on October 19th and it will de a defining moment regarding Brayden's future. If there is tumor growth the chemo will be stopped and at this point I don't even know what the next steps would be if that is the case. I am hoping for good results because he is tolerating this chemo so well and aside from having the tube placed it's easy. We just got the word that he doesn't have to get labs every week anymore so that will be nice!
One thing is for sure: Cancer changes who you are, how you think, and what is important in life.  You never know when things will be uprooted and changed. That being said, Brayden's diagnosis is not all bad. It has affected our family in amazing ways too. It has changed me in ways I never thought possible. I am more patient and kind, and I care less about petty things like a dirty house, or how I look. His diagnosis has allowed me to stop and really enjoy him and his sister in ways that wouldn't have been possible before. I have learned what really matters in life, and I have also been shown how amazing the people around you can be and what a huge difference a simple gesture can make in someone elses life. Brayden is thriving in his own way and even on terribly hard days we are still thankful for what we have!
 

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!