We've finally started the next phase in treatment - Interm Maintenance. We were delayed three different times because Lilly's counts weren't high enough. The main two numbers they look at is her Platelets have to be above 75 and her ANC has to be above 750.
We got to the hospital this morning @ 8:00. She was scheduled to have her spinal tap in the OR because the RTU (where she usually gets her spinal taps) was booked full. This made Lilly upset because she likes the fact that I can go back with her when she falls asleep in the RTU. In the operating room, we have to say our goodbyes and that makes Lilly really nervous. We checked in @ Same Day Surgery and then went up to Hematology/Oncology Clinic to get her port accessed and see her doctors. Lilly was nervous to get her port accessed because it had been a while since she's had it done. But she's brave and did great! Just before we were getting ready to head down to the OR, Lilly's nurse Jessica came and gave us great news... The RTU had a cancellation and we could go down right now for her spinal tap. It was like CHRISTMAS MORNING for Lilly!!! She was so happy that she was pumping her fists, jumping up and down, and screaming with excitement!! It's the little things that matter, right?
Lilly likes to watch "Frozen" while she leans on my shoulder and falls asleep for her spinal tap. Today she started the "Let It Go" song in the middle instead of the beginning. Normally she falls asleep really fast as she's singing away to the music. But, today was different. She got to the part where Elsa starts building her castle and singing "My power flurries through the air into the ground. My soul is spiraling in frozen fractals all around..." She was fighting the sleepy medication. She was trying so hard to lift her arms up and build her castle, but her arms had a hard time moving. It was really different to watch her struggle through it when normally she falls asleep really easily. Also, she woke up super fast too! Normally we have to wait for about 30 minutes for them to do the procedure and wake up enough to go back to recovery with her... Today, we didn't even wait 10 minutes! She was asleep, they did the back poke, and they stopped the sleepy medicine and her eyes popped open! Super fast! Wonder why today was so different?
We are now up to her room on the 4th floor. Waiting to start her high dose methotrexate. She has to be really hydrated before they start the chemo medicine. Lilly has to pee every two hours even through the night so they can test the levels in her pee. We plan on being admitted for 3-5 days, or until the chemotherapy is undetectable in her pee. I'm tired already just thinking about it. But, we are grateful we can finally start this new phase and continue on with Lilly's treatment.
Lilly had fun making a monkey craft that our neighbors, the Sprays, gave to her. We love when Lilly stays busy. It makes long hospital stays more bearable!
Lilly getting Vincristine (one of her chemos) and then starting the methotrexate.
Lilly has two and a half nurses today: Irish and Brittany (who is pregnant:)
Lilly painted Irish's fingernails!! She thinks he's a pretty silly nurse! He makes her laugh!
Yahoo for making counts. What a sport Irish is for letting Lilly paint his nails. Hope things go well for her, at least the best they can. She's always such a happy little girl. Grandma loves you Miss Lilly.
ReplyDeleteGlad she finally made counts so she can move on. So good to see her smile. Praying that all will go well. Love my Lilly!
ReplyDeleteDoesn't life seem to go a little bit easier for a moment when we think and look for the positive. Even when it's so hard and Satan wants us to give up. Do we stop to think that he also wanted the Savior to give up. What would have happened if he had? I think we all know the answer. Every time we are faced with a challenge, no matter what it is I hope we ALL stop and ask ourselves the same ? What will happen if I give up and do what Satan wants me to do? I promise at that very moment just like you said above, a positive surge starts inside of us, each one of us. That fighting since of never giving up. Which I like to call our very eternal endurance, that strength that for a brief moment we forgot we had. You see Tiffany, Jay, Lilly and everyone else it comes from our Eternal Father in Heaven. He created us with it and he expects us to keep it for eternity. I thank you for this lovely news. I know that Lilly is being watched over. Because Lilly has the strength I am talking about. Sending love.
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