With the boys being out of school we decided with her final chemo that we wanted to go as a family. So the boys went with us. We tried to wake them earlier than Mikayla so they could eat breakfast before she woke up. Going NPO (no food or drink) before spinals is hard on us we didn't want the boys to have to go too.
We checked into clinic and every step we thought, this is the last time...
We got to have Mary Lou as our nurse today which we were so happy about since it was our last chemo, plus she is so good with Mikayla on spinal days. Mikayla had a visit from Christie, her camp counselor come and sit with us in clinic too. This gave Mikayla the much needed boost for her excitement for camp (she leaves Sunday!). Morgan (our DM rep)also came to help us entertain the boys during the spinal tap. It was the perfect way to spend our last clinic day, it was much like a party!
Final port access
And then, low and behold a party did come to our room. Emily from childlife came down with Kirsten, who does music therapy at the hospital. They brought presents, a big sign and cookie cake to celebrate the big occasion. They also sang her an end of chemo song. We had a real party going on in that clinic room. Mikayla was loving it and at one point I even think I saw a tear forming in her eyes. I think this is a very special day for her! I wish I would have video taped the song and celebration because it was amazing. It brought tears to my eyes and goosebumps to my arms, just realizing we are at the end! These nurses, doctors, child life and all the UIHC staff have become friends that we will never forget. And the celebration was amazing!
Mikayla and Dr. Tannous
We were having a great time but we were also there to do some business. We got her last dose of Vincristine in her port. Her port has been accessed for the LAST time (hopefully). We headed for her spinal tap and she was in great spirits. Usually I have to hold her hand and rub her head but today she did it all alone. This left me to actually SEE my first spinal tap. I can honestly say I am glad I waited until the last one to actually see what they were doing. All the other ones I was preoccupied with keeping Mikayla happy (she is awake but loopy during spinal taps). She is known for coming out of the clinic grumpy (usually kicking and screaming)after spinals but today she was just in a mood. She didn't want to say good-bye to anyone she just wanted to leave.
We met with surgery about her port removal and had to go downstairs after the spinal to meet with anesthesia. This was NOT a good idea. We sat in the waiting area and you could just see the color leave Mikayla's face. She said she was going to throw up so we quickly tried to get a bucket for her. I took her into the bathroom and she just sat there not saying anything with continuous tears running down her face. Her eyes kept rolling back into her head and I honestly was getting VERY nervous. I kept talking to her and she said she was ok. She fell asleep on Brent was still not feeling well. We finally got through the surgery check and headed home. She slept the whole way home.
Shortly after we got home she did throw up. Those spinal taps just do that to her. But as soon as she did, her color came back and so did our sweet little girl. She is feeling fine now and even wants to head to swim lessons. Can you even imagine? It has been a rough last spinal day, but I keep saying, it's all done now, NO MORE!
We still have 4 doses of chemo to give at home and 5 days of steroids. But we will get through that too.
I can't explain all the emotions I went through today. My eyes welled with tears a couple times. It is a relief to be done and yet there is that scary aspect to it.
June 24th is when Mikayla will have surgery for her port removal. Then we will be Done DONE!
I have more to say but we are off for our evening activities. It was a good day, an emotional day and hard day all in one. Everyone was exhausted when we left the hospital, I think we were emotionally drained. :)
Christie
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