Thursday, June 26, 2014

Round 2 of High-Dose Methotrexate

We were admitted on Monday for Lilly's second round of high-dose methotrexate. She tolerated the first round really well, so we had high hopes she would do the same this round.


The first thing Lilly did when we got up to her room is write "Drinknp" on her white board, just like Irish did the last time we were inpatient. That's your main goal - to drink and pee EVERY two hours 24/7. It gets really old after about two days... This time we were on the 3rd floor in "K" pod. We LOVE it down there. Very small pod with somewhat "healthy" ICS patients, but very laid back and fun!!


Lilly was nervous to get her port accessed... It's hard on her to go a couple of weeks without doing it. She did great though. The first thing Lilly did after she got her port accessed, was she jumped out of bed and grabbed her music box. She got this special music box at Michalla's funeral from Michalla's mom. It is very special to Lilly and it's something she will treasure always. Lilly started playing her music box and calmed right down. She said, "When I play my music box I can hear Michalla." What a tender moment! Lilly was a little worried to come to the hospital without Michalla being here, but I told her Michalla will be with her when she needs it. I know she will. 


That giant dark bag is Lilly's high dose chemo. Isn't it huge? Lilly made Jessie, her IV pole, a new face because we forgot his old face at home. We like to stay as busy as possible at the hospital. It makes the time pass. 


With the extra yarn from Jessie's "hair", Lilly decided to make spaghetti. She asked Irish if he wanted to try some...? He literally put it in his mouth instead of pretending. All of it. Lilly couldn't believe it. The nurses are so great here to help the kiddos have fun. Irish is a goofy guy!!


That night Lilly got really sick. Her nurse gave her chemo pill to her earlier than we normally do at home and didn't give zofran beforehand. I wait until just before bed to give it to her so she sleeps through the nausea. We all know now that is a good plan.... Every other night we waited until just before bed, and it worked out much nicer for everyone. :)


We were so excited to have Sara as our nurse on Tuesday! She is one of Lilly's very favorites! Lilly had fun painting everyone's nails.




We met a new friend Hayley. She made a "Lilly's Nail Salon" sign for Lilly. She's an incredible artist! 



Lilly and Hayley hung out a lot in the halls. We're grateful that Hayley spent so much time with Lilly. It made our hospital stay much better. It's always nice to have friends! :)


Lilly got an elephant from Hilary the Child Life Specialist. The circus donated them. Apparently, Primary Children's Hospital is doing a study on the elephants blood because elephants don't get cancer! So interesting!!


Yesterday was Hayley's birthday. She turned 17. We had a party in the hall all day for her. Lilly's friend Braelyn came up to visit us after she finished in clinic. That was so nice of them to think of us. We have great friends!




Another thing Lilly and Zoe learned is how to squirt Irish with a saline syringe!! He is such a good sport!


Otis even came to the party!! ;)


Lilly opened up her nail shop again when all of Hayley's friends came to hang out. Lilly was in heaven!! She loves hanging out with the Big Kids! 


Lilly got a fever in the middle of the night. :( But we think that's how her body reacts to the methotrexate. With her first round we had to go back to the ER after we were discharged because of a fever. At least this time we were still in the hospital! We were up a lot in the night. Not only were we getting up every two hours to drink and pee, but Lilly had to get blood cultures drawn and antibiotics through her port because of her fever. We are extra tired this morning. But, we just got the ok to go home!! Her ANC is high enough and her fever hasn't spiked back up again. Yay!! We're excited!! Just waiting for our discharge papers and then we're outta here!

4 comments:

  1. So happy all went well. Also move to see her smile and have wonderful friends. Love y'all so much!

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  2. What a great hospital! It's like a party there. It's so neat to see all the love and friendship there. I'm so grateful that lilly keeps making so many wonderful eternal friends. Thanks for making others happy lilly. So happy you get to go home.

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  3. PCMC is so lucky to have Irish - he is the best! He has been making sick children smile since before Shayla had her lung surgery at the age of 5. We loved him then, and I was again very impressed with him during the 5 years I worked there. Lots of great staff in ICS. So glad Lilly got to go home, she is such a little trooper!!!

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  4. I am so glad things are going good this round! Lilly is such a trooper and such an inspiration to me! Love you guys!

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