Aidan was not getting any better this past weekend, but, Glenda and Ben Leatherman had graciously given us 4 tickets to see the FLYERS play Tampa on Saturday. This would be Calli and Aidan's first Flyers game. I told Mike to take someone else with Calli, like another father/daughter, but he was insistent on Aidan being fine, and Aidan could make it- we were going as a family.
Well, we went, and the game was sold out, we had awesome seats, got incredible gifts brought out to us from the Leatherman Family and it was an incredibly awesome and exciting game........
|I love my precious family|
|oh so sick Aidan :(|
|so she is SO funny- people think she is quiet- lol- she LOVES to yell, and cheer|
|Thanks Glenda and Ben! This is a signed Sergei Bobrovsky Puck!|
|AND a signed Claude Giroux picture- which Mike promptly framed :)|
|Danny getting interviewed-he made or assisted almost each goal that night|
|This is blurry- but with this goal, she totally jumped up and tossed her popcorn everywhere- lol it was hilarious|
|see? they look exactly alike! no one sees it but ME!|
|Goofy girl- look at her beautiful eyes!|
SO.... Aidan was feeling so lousy, and was not talking AT ALL. By the time we got home, his fever was so high, and he was still not talking at all. I checked his air capacity with our peak flow meter and he was in the red zone. I gave him a breathing treatment, as I had been, and then re-checked his air with the peak flow- still in the red. UGH! He could not talk, because he had no air! Then I saw this nasty white coating on his tongue, but it was not like thrush, then I saw that his tongue looked like a strawberry- he was shaking with chills so badly, and just needed air.
I took him to the ER, where they gave him a bed right away, and ordered a continuous nebulizer, with steroids and lots more albuterol, and an x-ray confirmed what I thought- "Severe Pneumonia," according to the doctor. My kids have had pneumonia so many times.
Then after a full body check-the doctor said that it was Scarlaltina- aka Scarlett fever!!! Once it was a major cause of death, but now it is effectively treated with some strong antibiotics. So, that weird rash he had on our trip, was the beginnings of it, then it turned to high fevers, strep throat, tongue junk and really bad pneumonia. He is home and re-couperating. He still has a fever though, and getting double the dose of albuterol every 3 hours in his nebulizer.
Sunday we had panned to go as a family to the Alex's Lemonade Stand Hero Christmas party in the city; Calli really wanted to go, so just She and I went. She wanted to go in a pretty dress, and she looked so beautiful!
They had fun things for the heroes and their siblings to do. Calli liked painting the ceramic ornaments. There was a funny magician too!
Therapy dogs came and the highlight of my night, was hearing from Daniel- another wonderful child- now 19 who was diagnosed at 9 with a spinal cord Glioma- an Astrocytoma like Calli's but the stage less- and his went to his brain- he had so many surgeries, but is alive and having the best attitude I have ever seen. He loves to laugh too! He does have some treatment side effects due to the young age he received radiation and chemo; like being legally blind, and 2 feet shorter than he should be..but man - oh man, he is so full of LIFE and JOY and PEACE. He and his mom were such an encouragement to me.
We sat anywhere we wanted, and I asked Calli where she wanted to sit, so she chose a table up front- the food was really yummy- as I was eating, i realized I had not eaten all day- I had not even had my cup of coffee ...and it was 6 pm! Guess I was busy- lol
So we were eating, and talking to other families, and there are ambassador families that go and speak on behalf of the foundation, educating people, raising awareness and money also for childhood cancer research. I was talking to the mom sitting next to Calli, and asked her if she was an ambassador, she seemed to know a lot about the foundation...turns out she was Liz Scott, Alex's mama. I had no idea, I felt kind of bad for not knowing, and was tearing up, just realizing the depth of what this child, this mom, this dad, her brothers who were sitting next to me had gone through and are doing for cancer research. Calli really enjoyed talking with her and Liz asked her if she would like to become an Ambassador as well. Calli is excited and willing to share her story to others- if it will help raise awareness and funds for research.
|Daniel is sitting across from Calli at the table, next to his younger brother, who is taller than him!|
|Liz and Jay Scott|
|Shirley and Yellow Santa!!!!|
|I made her sit on his lap- lol|
|Jay and Liz Scott with Calli|
It was funny thing, as we were leaving, I mean we are in center city Philadelphia- 8 pm, we go to cross at a red light on a one way street to the parking lot, and as we are walking, mind you we are walking at Calli's pace- I mean she was tired and moving a little slower than normal...anyway, the light turns green for the cars, some guy decides to speed up to make a point that he can almost hit us if he wanted to (even though he had a red when we started and we were free to cross)- so he literally stops his truck(and traffic) and yells out his window at us that "This is the street lady!" LOL, well by then, we were already on the sidewalk and I yelled right back at him, "She's got cancer - give her a break!"
You should have seen his face, his eyes got so big, and he said very humbly, "Oh!, I'm so sorry." Funny thing is, he was in a rush and wanted us to hurry up so he could go, but he ended up stopping not only his car, but the line of traffic behind him just to give us a hard time.
Calli looked at me and hugged my arm, and said, "Mom, that is when I am really glad that you stick up for me so much." Oh my precious Calli, I always will stick up for you, fight for the best for you- I will be your advocate, your cheerleader, your mama, your friend- till the day I die.
We got some good news about Mike's mom last night! The bone cancer is only in her femur bone, and the melanoma that was on her head, turns out to only be basil cell cancer :) We are still not sure about her organs- lung in particular, but I know that God is gonna work it out that nothing will be there when they look!
Please continue to pray for energy and strength for Mike and me, and for Calli and Aidan to be healthy and no more germs!!! Also, emotions are running wildly with my children, it is hard for them to deal with all of this happening at once. Please continue to pray and believe for restored health for Calli, Aidan, Linda and my dad Matthew, who is dealing with some very debilitating spinal issues himself.
Thanks and God Bless!
OH! Don't forget, tonight at the Mercer Museum, Doylestown, Calli will be ringing with her traveling choir.