Home again, home again!
We are pretty excited to be home. We managed to leave the hospital around 5:30 pm last night, and were home for a sushi dinner! It was so nice to be able to sleep in our own beds.
Overall Charlotte handled the start of this phase really well. As our discharge summary says, "She tolerated high-dose methotrexate well and cleared rapidly". We add on the 'high dose' in front to differentiate it from the intrathecal methotrexate, which is what Charlotte gets every time she gets a lumbar puncture.
Despite having been changing Charlotte's diapers every 2 hours (or less), she still ended up with a very sore bum. The chemo is so toxic, and very hard on the skin. She had a bit of diarrhea in the hospital as well which didn't help. We've been given a cream and we are doing our best to keep her bum clean, and dry and adding in lots of naked time. Hoping it clears up soon.
Just tonight while brushing her teeth, we noticed a bit of bleeding gums which is a sign of mouth sores. Mouth sores are usually at their worst 5-7 days after chemo starts so I guess we are right on target. She hasn't seemed to have lost her appetite though and doesn't seem in a lot of pain (with her mouth, the bum is another story) so that is good.
If you were to see Charlotte (and she wasn't having her bottom changed) you would smile - she is a pretty happy girl right now - and you would not believe she had heavy duty chemo a few days ago.
The positive part of all this is that Charlotte's ANC was 0.83 when we were discharged and the chemo she received this round doesn't have ongoing decreasing effects on her counts - so - we are out of the bubble (albeit with hand sanitizer in our pocket)! With the ANC still below 1, we won't be hitting the ball pit at Ikea, but we can venture out as long as we are good with hand washing and staying clear of obviously sick people. The 3 nights in the hospital to have 10 days out of the bubble is almost a fair trade off. It may take a little longer for the methotrexate to clear on future visits (ie. we might be 4 nights in the hospital), but otherwise this should be pretty typical of the next 2 months. We may even try to plan a couple short trips.
We are planning on a close to home camping trip for tomorrow night - wish us luck! We have never been with the kids, and the last time Stefan and I camped was probably back in 2004 when we did the West Coast Trail. Charlotte is super excited to sleep in a tent and roast marshmallows; we are excited to watch our happy girl experience something new! Stay tuned for our camping experience!
superhero
1 comment:
Hi Taleen, Stefan, Charlotte, and Nathan,
I stumbled across your blog while Facebook surfing tonight. Just wanted to say what an amazing family you have despite all that you guys have been through over the past 2 years.
Taleen: You are an inspiration to all wives and mums out there. Your strength, courage, dedication, and faithfulness to your family is unmatched. You are, in every sense of the word, a SUPERMOM.
Stefan: You are an amazing husband, father, teacher, and mentor. So happy to hear that your road to recovery, though rocky at times, has been ok thus far. I never had the chance to thank you for being an awesome teammate and mentor on the rugby pitch. Your easy-going personality, smile, and goofiness on those road trips have always stuck with me (ex: your white "car bib" that you wore one time so that you would not spill your McDonald's inside your car while you drove and having Rich or was it Tom feed you) :).
Charlotte: You are one tough beautiful little girl. I will never know what you are going through but I do know that you have the most loving family around you. Hang in there Charlotte!
Nathan: Keep on smiling little buddy!!!
Sending you all positive vibes and keeping your family in my daily prayers.
Starvin' Marvin - SFU Rugby 2002-2004. (the skinny Chinese winger).
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