Monday, February 22, 2016

Lilly Update:

Last night was really hard on Lilly. Her fever wouldn't break except with ibuprofen and she was miserable. High fever of 104.8, chills, shakes, throwing up, extremely pale, high heart rate, dizzy, horrible headache, nauseous. Overall crappy night. I was very worried about her. The adenovirus is hard on bone marrow, so Lilly received a red blood cell transfusion this morning. It helped her so much!! She perked up, her awful headaches went away, and she feels like a new girl! Her fever also broke and she hasn't spiked another one yet today. (knock on wood). I don't want to jinx it, but I'm hoping she's through the worst part of it. She's still on two broad spectrum antibiotics, one of which she has to be premedicated to receive it because of a previous reaction she's had. She's still weak. She's still pale. But my Lilly girl is getting better. We'll see what tonight brings. I don't know why, but nights are always harder. I think both Lilly and I got only 2-3 hours of sleep last night. 

So grateful that Michalla's family came up to visit! It lifted Lilly's spirits so much. And I'm very grateful they came during a time she was feeling well. Right after they left is when her fever spiked again and she was so sick. And we love tech Holly too. Some of Lilly's favorite times in the hospital are spent playing cards with Holly. 

This morning... Lilly was so sad and crying silent tears. I asked her what was going on and she said she was "afraid that she was going to have to go to the second floor where Michalla went." (ICU) Broke my heart. Sad thing is her nurse was kind of toying with the idea because she was so so sick. 

Feeling better today! We had fun making clothes for our "bendy guys" out of paper towels and tape. Cute! Gotta keep busy to pass the time!

We miss seeing Susan the Art Lady! So glad we got to see her and make mandrake roots from Harry Potter. We are starting to read the Harry Potter books with Lilly right now, so this is a fun craft for her. I'll post pics when it's completed. So grateful for good days. Hoping she will continue to get better from here. 

Magical Moments with the Mascots

As you all know we have been lucky enough to see and get to know the Mascots a lot since Lilly's diagnosis. And well... We just LOVE THEM! They bring so much joy to my girls and our family its hard to imagine life without them. It still amazes me how they can light up a room when all they do is walk in. It's like bumping into an old friend and seeing that you still have the same connection you did many years ago. 

The Mascot Miracles Foundation invited our family and many others to go to the aquarium for a night of frivolity and dancing.  We love the Mascots and the aquarium for all they do to help put a smile on these wonderful kids. We even got to meet a few new friendly mascots during the night. Like Sergeant Siren, Flex, Duffy, and Rusty.

Meet Flex, Felix's Little brother (I think) He sure was nice! Love the smiley beak! Emery even said he looks happier than Felix. Maybe Felix need to smile more (Wink Wink)

Emery certainly loves her Cinderella. We also love seeing our favorite mermaid Ariel and Lilly's friend Sam.

We love Griffs new look!

Always so excited to see our favorite Blue Bird Felix.  Lilly got to spend time with her new friend Chrissy.

Watch for Sharks!

Jazz Bear's just a big teddy bear

As much fun as we had that night. It quickly came to a hard end when Lilly started with a fever the moment we got home and had to go to the ER. Fortunately we had an ER nurse that was able to access her port on the first try. Lilly's fever got up to 104.7. Such a dramatic change from what it was earlier that evening. More of the wickedly eventful weekend to come in another post.

Thanks Mascot Miracles Foundation for such a wonderful evening.

Here's the news report that the Mascots, Lilly and I were on.

Friday, February 12, 2016

2 Year Diagnosaversary!!!

Today marks a moment in time that will forever be in our minds as the day Lilly was diagnosed with Acute Lymphoblastic Leukemia.  It comes as a bittersweet moment. Sweet as we express gratitude for having Lilly in our lives. We couldn't live without her.  But, we are bitterly reminded of the ever real possibility that life is fragile and that her life may be shortened because of cancer or all the chemo she's received.

As I have been reflecting on that dreadful day which tossed us into this chaotic adventure, I found my self browsing through pictures and reading through specific moments on Lilly's blog. Only to be reminded of the feelings and tears I felt and shed over Lilly in those first moments and nearly every day since. In the beginning I felt Fear, Desperation and Concern. But, as the days turned into weeks, months and now years my feelings have changed from that of darkness to those of gratitude, love, hope and appreciation. Though all those emotions seem to well up inside from time to time. It has been our goal as a family to look on what we can control and that is our "focus". We can choose to focus on the fact that Lilly has cancer, or we can choose to focus on the fact Lilly is still a beautiful blossoming young lady who has the kindest of hearts of anyone I have ever met. That is why we have a word of the day every day to help us keep our focus on what really matters. 

Last night and this morning also came as an even more difficult day than we expected it to be in the fact that Emery started fevering last night. Which came the day after her having a nose bleed that didn't stop for nearly 24 hours. Her fever reached up to 104.4 for several hours and she refused to take any medicine to help reduce the fever. Now as a parent of a child with cancer our minds immediately think of the worst possible things. Especially since we just refreshed our memories of the initial moments of Lilly's diagnosis. Her fever continued into this morning, hovering around 103 degrees. We decided to take her into the doctor. Sadly enough Emery has a double ear infection. But, I couldn't be more proud of her as she faced her fear of doctors that she's developed over these past two years. By fear, I mean crawling up the walls deathly afraid of them kind of fear. She surprised me though, she was able to allow the dr. to listen to her chest and look into her ears, all through tears and constant sobs. But, she did it.

As I mentioned before we were tossed into this chaotic adventure. But, I use the word adventure in the fact that like all adventures stories, the hero is faced with many challenges before the happy ending. Our hero Lilly certainly has been met with many moments of great opposition. Some that tested her strength, some that tested her mind, and others that test her very soul. But, would a hero be a hero if they never faced opposition? Would a hero be as strong as we know them to be if they faced tasks that were easy to do? Though I wouldn't wish cancer on any one I am truly grateful for the strengthen Lilly and all of us have gained. And hey, we know the final out come of it all. Good shall triumph! No matter what happens here on earth we look forward to live together as a family with God.

Here's a video of the past 2 years. There certainly have been moments of shear difficulty but, we choose to look at the more happy moments. That's why you won't find (at Lilly's request) some of the more difficult or scary moments. Notice as I have, Lilly has never been alone in any of this. She has always had someone there to lift her up and bring a smile to her face. Thank you all so much for your kindness, love, and prayers.

Remember, No One Fights Alone.

Below are Lilly's reflections of that day:

looking back at that day I felt scared, I thought mom and dad were going to leave me there at the hospital. I had to go out of the room when the doctors came in and talked about me. because I needed to get a way from that part. I was in tears that day I felt i could not do this. some times I say this is all my fault for getting cancer.  that was then but, now I am amazed by what i have ben through. Thank everybody for the help.
Love Lilly

Please flood the "comments area" with your memories of that day and words of encouragement for Lilly today.

Thursday, February 11, 2016

Ice Castles

So fun! So excited to be there! So glad we went! Midway Ice Castles is a sight to see! If you haven't seen it before, I would highly suggest it. Unfortunately, Monday is the last day they will be open this season due to warmer temperatures. 

The girls couldn't believe it! Emery kept looking for Elsa, but she wasn't home!

Jay laid in the snow to get this picture. Just don't look up our nostrils. Ha!

I would love to see how it's made. It truly is a phenomenon!

Slides made of ice? What could be better? 
So glad we dressed extra warm in our snow suits.


By this last picture, Em was done. She was ready to go back to the car. But, both girls were awake the whole way home talking about how much fun it was! Love making memories with my family!