Well we’ve been home from Illinois now for a week but blog.com has been having some sort of melt down so I gave up on their site & moved everything back to blogspot!
Our trip was a little stressful just because I didn’t have as much time to get everything together as I would’ve liked, but it all worked out & I’m very glad we have it out of the way. That’s just one less thing I’ll have to worry about doing this summer.
We left for Illinois early in the morning on Sunday the 5th & got there right before bedtime. I think we only stopped 3 times. We cut the trip down by an hour from last time so it only took 9 hours instead of 10. The Ronald McDonald House welcomed us with open arms again & we are ever so grateful for their hospitality. It's wonderful to have such a homey place to go to when we're so far from ours.
Monday was a busy day, Bailey was scheduled to check in at the hospital at 7:30 to get all her admittance paperwork done prior to our appointment with Dr Pranzatelli at 9 because right after her appt with him, she was scheduled for her LP (lumbar puncture) at 11:30.
The visit with Dr Pranzatelli went well, she is of course walking & talking which is miles ahead of where she was in October when we were there. She's still having myoclonus issues, meaning while trying to do small tasks her hands become shaky. They test this by having her do several things, like putting a paperclip into a very small jar, mimicking drinking from a cup, placing shapes in a shape sorter, trying to stack blocks, etc. She can do these things, but she's just shaky while doing it. She's also still side stepping, has a little problem balancing while she stands, & steps backwards a lot.
He was pleased with her progress, but she's still got a long way to go. He says she will need to stay on the daily ACTH injections, at the same dose we're at now for "a while". I'm sure he'll specify how long that means once we get the results back from her spinal fluid. He bumped her Trazodone dose back up to 50 mg to help with the rage. As always, I detest going up on meds when the goal of course is to go down, but it has been a tremendous help with the rage & has even helped her sleeping. (Previously she was sleeping better on the 25 mg than she was on the 50.) I was hopeful that she wouldn't need the additional doses of chemo, but he says she definitely still needs to be on some immunotherapy so we're waiting for the results of the lumbar puncture to decide what kind. He previously prescribed Cyclophosphamide, but I told him I wasn't as pleased with the results of that as I was with the Rituximab so he said he would wait to see what her B & T cells looked like & he would go from there.
After we left his office, we walked back next door for her surgery & had about an hour until they were scheduled to do her LP. She was already getting antsy but they showed us where the wagon was & we pulled her around the halls for a little over an hour & she was good with that! They gave her some Versed about 15 minutes before she was going to go back so she "wouldn't care or remember" that she was being separated from us. Handing her over is always the hardest thing for me because she has a come apart & always looks at me like she can't understand why I'm handing her to someone else & walking away & it literally feels like someone kicked me in the gut. The wagon was a blessing here too because we walked her down to the "R. E. S. T. R. I. C. T. E. D. A. R. E. A." (Hannah had been spelling it to us every time we made a lap down there) & the nurses just kept on pulling her through as Hannah & I stopped at the door. My big mistake this time was not telling Hannah that they would be taking Bailey. I was so worried about Bailey melting down that I didn't even consider that Hannah wouldn't understand. She started screaming "Bailey, Bailey! Mommy, they're taking Bailey!" (Insert kick to the gut again!) :( I picked her up & hugged her & gave her the simple version of what was going on & ensured her that they were going to take extra good care of her & she'd be back with us very soon. She was fine with it, I'll just know next time to prep her better.
The LP itself went really well & after he was done, Dr P came out to the waiting room to talk to us & answered a few questions I had left. I asked the nurses to please let me go back before she woke up because if she woke up & I wasn't there I knew it would start an epic melt down. I was ill prepared for the actual melt down; I think she raged for close to 45 minutes. I was there when she woke up, but she was NOT a happy camper! We were in a small curtained off area & they ended up moving us to a room with a door & after a while of the nurse just staring at me in shock, watching me trying to hold her so she wouldn't jump into the floor or bang her head on something, they ended up covering the floor with several pillows & blankets & I just laid her on the floor & laid down next to her. She ended up falling asleep, napped for about 30 minutes & woke up a much happier little girl! :)
We spent the night at The Ronald McDonald house again just so we'd be close if she ended up having any sort of complications from the LP, which she didn't. After breakfast Tuesday, we got an early start heading back home & managed to make it home by about 6:30 pm.
All in all it was a great trip, now we just wait on the results from the spinal fluid.
Headed to IL - fun with balloons
We stopped for a potty break & let everyone out to stretch their legs.
Checking in at the RMH - Hannah missed "McDonald"
Mommy & Bailey waiting to get the admittance process completed.
Daddy & Hannah watching cartoons while we wait!
More waiting...this time in Dr P's office. Everyone is very focused on watching Strawberry Shortcake! :)
Waiting to be called back for B's LP.
She was getting restless so they gave us a wagon...it was a life saver, it kept everybody happy for about an hour while we waited!
Hannah enjoyed pulling Bailey around the halls.
Bailey & "tiny baby" heading off to surgery.
Finally got B settled down & she decided it was nap time...we just let her sleep!
Someone's excited to be headed back home!
Bailey learning her letters; a cookie sheet & some magnetic letters make for a nice distraction during a long trip.
This was Hannah's favorite car game, Bailey was still too young to think it was much fun. I cut fish shapes out of felt & super glued paper clips to them & then made a fishing pole out of a dowel, a magnet & a piece of yarn. I just threw the fish in the floor & she could try to "catch" them!
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