Wednesday, April 9, 2014

Day 160 - Update

The past 3.5 weeks on Anna's joirney have been filled with ups and downs. Now being treated at Memorial Sloan Kettering cancer center in NYC. 
We are clearly very impressed with thier team and treatment approach. While it's the same as far as drugs is all out patient. Think of it as a chemo drive through. It really makes you have to be be even more aware if everything as a a parent. Talk about needing to be responsible. This kicks it up quite a few notches. 

Each Monday and Thursday for these past weeks have started with a 5:30 wake up so we can drive to NYC for 8am appointments. Monday is the chemo day and Thursday is the day to check her labs. Anna's been phenomenal these days. She just gets up and goes. No questions asked, never once saying "I don't want to go!" A real warrior. So proud of her. 

The first week started as planned with her drive by chemo. It went off with our a hitch. She was doing arts and crafts almost the entire time. Gotta love it. That week Anna was feeling good but by Tuesday at noon she was started to show signs of exhaustion. However she still was up for hanging with her friends a little each day. Now, the first Thursday was a lab day but in addition she was to receive another chemo only this one time. It's called Pegaspargase
It was a drug that Anna reviewed in the very beginning on day 8. We were told then and now that there is a chance for an allergic reaction. What's interesting is that there is a higher risk of having a reaction the second time you receive the drug rather than the first. The nurses prepped for the worst case scenario just incase. Kind of prepping for the worst but hoping for the best. As she began the treatment with the "Peg" (as it's called) I watched her like a hawk for hives, itching and signs of difficultly breathing. Now 10 minutes in to a 60 minute drip and all is good. All that changed at 11 minutes. She suddenly started getting itchy and showed a few hives. After calling the staff they were on it and by 12 minutes Anna was having a tough time breathing. At this point they were all hands on deck taking care of Anna. She was so brave I cannot believe it. A 9 year old was now surrounded by a team of 9 Dr's and nurses. All shouting different things TK each other. They stopped the drip and had her some oxygen then followed by a nebulizer to help her lungs to clear up. In all of this craziness which all lasted 20+ minutes she never even she's a tear. It's amazing however strength she has. Good news is she was feeling better but we needed to stay at the hospital for observation for the next few hours. It went off with out a hitch and 10 hours later from when we arrived , we headed home. Wow what a day! 

The following week was much less nutso! 😜. Like clock work Tuesday chemo and Thursday labs. But then came Saturday. At about 2pm Anna had another seizure while in the car. After being rushed to Norwalk hospital she seemed stable and by 5pm the dr's at Sloan said they wanted us to bring her down for some more testing. While getting some things from home for our trip (since we had a feeling this would be an overnight journey) Mom called me at 6 to tell me she just had another seizure. This continued to be a horrific nightmare. quickly they have her a CAT scan which came back clear! Phew!!  
By the time I return to Norwalk hospital there was a transport team from Sloan ready to take her. Anna was wiped out from the meds they have her to stop the seizure. She also couldn't speak. :( 

Of we went to NYC at around 9:30pm. Arrived at Sloan. Now barely awake Anna was speaking well and no more issues. All of us barley sleeping trough the night woke up the next day for Anna to be set up for another EEG exam. Great news! No issues with her brain. Not so great news, they can not really figure out why she's having seizures, so they increased her anti seizures medications in hopes that would help! 

One more night at Sloan brought us to Monday. Anna is still feeling great, is seizure free and ready to go home but a lumbar puncture is on order to check for any infection. 'Side note. When you are admitted over the weekend and they want to do a test on Monday mornings they "fit you in". Which means they give you time guesses just like the cable company. "Anytime today between 8-4pm. ' Now about 2:30 with Anna so hungry since she hasn't been able to each from the previous night Anna's isder anesthesia getting her LP. Once she wakes up she's sooooooo happy to eat! 

Now Tuesday and still at Sloan we get the tentative results that's she's clear of infection. Great news! But still concerning that there is no real answer to seizure. So next up is to get her chemo, now a day late. Quick and easy, chemo done and we head home around 6pm. 

The rest of that third week was pretty low key minus some decadron fits but Anna did great. 

Week 4 was a rest week. No chemo and Anna simply just had a happy week. :-) 

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