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Sofia Rodriguez - Journal

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Posted 2016-04-18T05:16:40Z

3 down, 1 to go!

Well this high dose methotrexate treatment is keeping us on our toes. Every round has been just a little bit different. We did not hit early clearance this time, but we still cleared faster than the first round. Either way, we were very happy to hear we cleared and got to come home and enjoy the beautiful day!! Sofia wasted no time, wanting to get right in the pool. It's pretty amazing how she transitions from hospital life to home life and vice versa, so quickly.
When we arrived to the hospital on Wednesday, Sofia went in for a lumbar puncture with spinal chemo. Though she's had this done a number of times this time was rough. She woke up as she usually does but within a hour she started to feel really nauseous. They gave her a secondary medicine but it didn't help much. She ended up getting really sick and throwing up for over an hour. She has definitely vomitted before but nothing like this. It was so sad to see her like that. They decided to give her another dose of zofran and add in some Benadryl. The vomitted stopped but she was loopy! When we woke up the next morning we had our girl back. Smiling, laughing and dancing around the hospital. We played games, lots of crafts in the playroom and Sofia even gave daddy a manicure (which he still has). We expect this week to be like the others, where she feels ok but has no real appetite until Saturday when she starts to eat and doesn't stop until we start round 4 a week from Wednesday.
With Noni getting bigger this juggling act is getting a bit tricky. We are just happy he's not crawling yet and we can still keep him contained at the hospital. I have to say the best moment of the day when we are there is in the morning when Mike and Noni walk in. No matter how she feels she lights up when she sees her brother and he of course, he gives her a pretty great reception. We are so incredibly blessed to have such amazing kids.
Again, we want to thank all of you for your support and prayers. No days are easy but some days are great, and today was one of those days![...]

Posted 2016-04-02T22:51:01Z

2 of 4!

Round 2 (of 4) of High Dose Methotrexate is complete!! This past week has been long to say the least. Clinic visit on Monday, Noni's 6 month birthday on Tuesday and admitted to Lucille Packard on Wednesday. Sofia was amazing at pre-hydration on Wednesday before starting our chemo finally at 9pm. She was guzzling all day and hit her pre hydration parameters on the first try. Once the chemo starts she doesn't feel great and loses her appetite. We finished chemo on Thursday night and woke up Friday pushing the water and lots of walks. Unfortunately this hospital stay was extremely frustrating with a complete lack of communication between the doctors. Long story short, our chemo ended an hour late and when I questioned the team they told me it was because Sofia took a "bathroom break" for 40 minutes between doses. Well maybe they think I'm stupid or not paying attention but it just wasn't true. Not even sure what she would be doing in the bathroom for 40 minutes!! I called them on it with my exact notes with exact timing. Sure enough there was not a 40 minute delay which the nurses clearly documented in Sofia's chart. This was one of 4 issues that we had in our short stay. Just too many cooks in the kitchen with the rotating doctors. I kindly told them all to not come back into our room until they take the time to read the chart for themselves.
The good news is that Sofia hit early clearance just 23 hours after finishing her chemo. She needed some extra potassium over the night but everything looked great this morning and we were home by mid day!
Out next scheduled admittance is not until next Wednesday so we have 10 days to relax and play!! Hoping Sofia feels good over the next week and again has little side effects.
Thank you all for your love, support and prayers!![...]