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!

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!