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!