The RiderGirl blog is dedicated to sharing stories about childhood cancer.
Today as Naya struggled to do the basics of sitting and walking, she and I talked about how brave she is. I don't know what I said to prompt her point but she told me that we are a very lucky family and she was so fortunate and lucky. Imagine the character she has to be able to say that given her condition. Even in this horrible time, we are lucky to have so much love and support surrounding her-and blessed with two amazing children.
Alrighty then! We are headed out of the Pediatric Intensive Care room downstairs into our lavish, private suite for a night. Then we are blowing out of here tomorrow.
Naya has been through more than any child should have to go through, and she is facing a long road ahead. I am so inspired by her spirit, bravery and strength. She is trusting us and her doctors to get her well-and doing her part to make that happen. She is amazing.
We are hanging out in the PICU recovering from the soreness of having a plastic straw, sort of, snaked from our brain to our abdomen. The painful part of this for the next couple of days is the abdominal incision used to pull the straw from the neck down to the abdomen. Those core muscles are used for just about every movement and when they are sore, oh boy that is unpleasant. We are going to stay in the hospital tonight since the soreness/pain is a little more than we expected plus we have a bone marrow harvest procedure tomorrow at 8:30 am.
I will say that the Naya of old is emerging and popping through the pain so I'm pretty confident the shunt is doing its job. She seams much less dizzy, less nauseous, and generally less discomfort although that is masked somewhat by the abdominal and neck pain.
So here is to another night at CHOP and the wonderful Bobby Burger Palace burgers. Check it out, Bobby Flay's burger joint.
PS. Naya loves the chocolate shakes.
Naya awoke from surgery just fine! The surgery went well, lasted about 30 minutes and achieved its mission. Last night she was feeling a fair amount of post op pain but once we administered the pain meds she was sleeping comfortably. The expectation is that she can eat and drink what she wants, that she will be up and about this morning, obtain physical therapy sign off, and be homeward bound in the afternoon. That is the plan.
We will take it one step and goal at a time.
After a very long day Naya came out of the MRI with a bad headache. Â I checked her incision and it was pretty clear to me that cerebral spinal fluid (CSF) was pulling around her incision so I asked for the neurosurgeon to come check her out before we went home. Â Sure enough, he agreed and asked if she had eaten anything after the MRI. Â She didn't so he went immediately to schedule an operating room so he could install a shunt in her tonight. The surgery just started at 8:14. Â It should make her much more comfortable. Â The best day she has had since the initial surgery was when we brought her back into the hospital because she was leaking a little CSF. Â My hypothesis is that while the CSF was leaking it relieved all the pressure from her brain and made her feel like the Naya of old. Â Lets hope the shunt does the same thing and makes her much more comfortable.
Certainly not the outcome from the day that we wanted but we will take it one day at a time.
Naya is getting her fitting and an MRI today. While she was waiting, they have her a cozy pillow case to keep her comfortable. Naya thought they were the same ones that AIS created for MLK day. The nurse thinks they are. How ironic that one ended up with Naya today! Hopefully a good sign that the day will be good.
Good morning. We start procedures today at 10:30 with radiation simulation. Â We have to make a mask of her face that will look similar to a hockey goalie's mask. Â The mask will be used over the next six weeks for her treatments to keep her completely still and ensure the accuracy of the treatment. Â It's a long haul, 1.5 hours on her belly.
The next procedure is a spinal MRI which is 2+ hours on her back. Â Can you say boring? Â Neither of these procedures are painful, they are, however, long and tedious.
One other procedure is on tap for today also and it will be painful but she will be sedated. Â Hopefully when she comes out she is not feeling sore or uncomfortable. So a big day to say the least. Â It may sound like too much but we are working to accomplish all the preparation activities we need to get into the treatment phase as soon as possible so we can cure this thing.
Oh yea, one other bummer, no food until all this is over because of the sedation. Â I better have chocolate chip cookies, pasta, and fruit all at the ready.
Today was a great day! Naya was home all day, we didn't see any leaking, and I couldn't, neither could the neuro-oncologist, feel any pooling of CSF. Tomorrow is a huge day. We simulate the radiation treatments where they make a mold of Naya's head which will take about two hours. Then we are off to a spinal MRI, 2.25 hours, and bone marrow biopsy and fluid harvesting. Can you say ouch?
Wish us well.
Good morning indeed! We have NO CSF leaking and there also does not appear to be abnormal pooling or collecting of CSF under the skin implying it is draining as it should through the drain the surgeons installed 12 days ago. We will keep a close eye on her today so please keep all the positive vibes coming our way.
Naya just had 6 vertical mattress sutures added to her incision to attempt to stop the csf leak. Now I need everyone to send positive, no leaking vibes her way. Tomorrow am is the milestone. No leaking overnight!
The day started off good. No headache. No throwing up. Naya had a couple of pancakes with M&M's Of course and then she and i watched the finale of Downton Abbey together. It was the first time we could actually enjoy something and relax in a long time. She got a shower and we finally got her new bedroom in order. The fluid at the incision though kept showing up. So, we called the doctor and he wanted Naya back at CHOP. We are hoping new stitches do the trick but we aren't totally sure. If not, she will get another minor procedure tomorrow.
She is resting now and we are just waiting.
Naya is having a great day. She woke up strong with almost no headache, we use a scale of 1-10 and it was a 1, took a shower, washed her hair, but alas her incision is still leaking ever so slightly so we must go back to CHOP. Just plain sucks because she doesn't have any nausea and her pain is very mild. She is definitely on the mend. They will see if adding another stitch or two will do the trick or if we have to have a shunt installed tomorrow. Let's all hope for a stitch.
The simple things in life. Dinner with the family, home made mac and cheese, and a great piece of steak. It doesn't get better than this!
We where discharged late this afternoon and about to sit down to a family dinner of prime NY strip steak and home made, Amy's famous, mac and cheese at home! Thank you all for the prayers, well wishes, gifts, positive energy and encouragement.
Until tomorrow....
This feels awesome!
Naya is hanging tough! She had to spend the night back at the hospital in order for the doctors to monitor her incision and determine the best course of action. It doesn't look like she leaked any more csf since Thursday night which is great. But, she did have a bad headache last night which could have been from higher inter-cranial pressure due to increased csf, or could have been that she isn't quite ready to be off all the pain medications. We gave her some pain meds and she rested well. Btw, her CT yesterday was normal and showed flat ventricles which is what you want to see on a cat scan.
The neurosurgeons will make their rounds this morning and determine if she should have a shunt installed in her brain to help with the csf drainage or if the EVD procedure they did 10 days ago will perform the job.
If we have to install a shunt she will be in the hospital until tomorrow. If we don't, we will be home today. Quite honestly, it's too close for me to call at this point so I'm in the same position as you. We'll just have to wait it out.
Look for an update mid-day.
Naya's CT was completely normal and looked great, so good news. The neurosurgeon admitted her for observation to make sure she has stopped leaking csf, cerebral spinal fluid. The thinking right now is that if there is no leaking through tomorrow they will release her. If she does have subsequent leaking they will insert a shunt tomorrow and hopefully then she would come back home on Sunday.
We are hanging in there with her and taking it day-by-day.
As you can imagine brain surgery is not your run of the mill procedure. It's filled with ups and downs and we've had a bit of down evening and morning going on now. We may have to make a trip into the neurosurgeons and have them take a look at her brain and make sure her cerebral spinal fluid is draining properly and her incision is healing as they would expect. She just can't seam to shake the morning nausea. It must be such a drag for her to wake up, but she is a strong girl and really tries to keep it together even when she is feeling so poor. I'll send out an update after our doctor check up this morning.
