Shunt and Chemo Cycle #2

What a week! We got to come home last Sunday for Easter dinner which was great, but Kade was still not feeling very good. She was miserable and in a lot of pain. Since this was my first round of Chemo I had no idea if this was the normal or not. She wasn't even holding her head up and was very weak. For the two days I was able to be home it was hard because she was just getting worse.

We had a clinic appt on Wednesday with Dr. Guyer, her Oncologist. Her counts were fine and he was gearing up to get her ready for round two of chemo to start on Friday. He asked me if she was happy and playful and energetic at home... um, NO not at all. She was still throwing up at least once a day and 3 times that morning. In fact it was a very hard morning because Kade was so lethargic and so sick. She threw up in the car while I was driving her to the doctor and I felt so bad cuz I was by myself and I couldn't pull over but just had to watch her vomit all over herself in the rear view mirror. We got her all cleaned up but this is when I finally had a breakdown. I couldn't see her decline more and more for 6 months! It was hard. So the doctor was a little concerned as well. He wanted me to get an MRI, well of course that day the MRI machine was down. So I went home, she was still vomitting. We called the doc a few hours later and they told us to go to the ER and ask them for an MRI. Fast forward a few hours and the Neurosurgeon was rushing into our room in the ER after reviewing her MRI and was surprised to find Kade smiling and interacting let a lone being awake. Her ventricles in her brain were huge. He said he was expecting her to be unresponsive and comatose. Well, she definitely needed a shunt. Which is a valve put in her brain to stabilize the pressure of the CSF ( Cerebral Spinal Fluid ). It is attached to a catheter to drain the fluid down to her the outside of her stomach where there is also fluid so the body can absorb it. So lucky for us Dr. Ellenbogen who did the tumor resection was the Doc on call. He came in and they started surgery around 12:00 am. Surgery went perfectly. They had to cut her head open on the opposite side to put the shunt in. I was sad about this because her other incision was healing sooo nicely. But at least they are on her head and she will have hair covering them someday. The other thing about a shunt is that it is usually life long. This is because it is hard to tell how much the person is absorbing themselves or the shunt is helping to drain. It is also very likely to fail and she will have to have the valve or the entire thing replaced at least a few times in her life. This made me sad that she will have to deal with this, but I know it is helping her feel SO much better. I also know that technology is amazing and they might come up with something better soon. Here's to hoping!

She's been recovering well except has had a lot of twitching which led to an EEG. they found there was no seizure activity but she is at risk for developing it because she's had major brain operations. We've been on the Recovery floor, then they moved us up to the Heme / Onc to start chemo. She's still been really nauseous even before chemo started but this is probably just residual from her hydrocephalus (brain swelling). She has shown HUGE improvement in her strength though. I put her down in the crib and she was so mad she flipped over and got on all fours trying to stand up and climb out. Before this she hadn't lifted her head in weeks so I was thrilled. She's been holding her head up and being pretty active. She is also starting to talk again! Saying Mamma and Booba and na no. This made me so happy to see her actual personality come back. The nurses have told me that it does get better. The kids are sick from the chemo usually for a week then start feeling better and acting like themselves. This made me very glad that it wasn't going to be so hard for the next 5 months. I was feeling pretty defeated. Her right side is still very weak but the Neurologists said to give it time and she should make a good recovery.

Round 2 of chemo started yesterday and we should be here for a longer stay this time because they want us to wait until her counts start to go back up, I guess its harder for the body to recover the 2nd time. So we'll be in the hospital at least a week, maybe 2. She's already been really sick this time around. My sweet Mom and sister took the night shift for me last night and it was a rough night for them and her. I felt bad I couldn't be here for her to comfort her, but was soooo grateful to go home and get a good nights sleep. My 2 sisters, Lindsey and Kailey came up from Utah yesterday to help out for this cycle. I am so thankful for such an awesome supportive family.

It's been an emotional roller coaster, but we're surviving and making it through one step at a time with a lot of support. It's nice to have my other kids around so I can see them almost daily and so we can have a little bit of a routine. Clay's been a champ running the show at home. Even though we're not all together and that part is hard, I sure do love my people. Kade lights up when they come visit and laughs when we Facetime or I show her their pictures on my phone. So cute. I also feel the prayers of comfort and especially STRENGTH this week as I have not had much sleep but have been making it through. God has blessed me in this way.

Thank you for your continued love and prayers. I've had some hard days and its been comforting to know I have so many that got my back. XO