Wednesday, January 27, 2016

School of Medicine 2016

Our very favorite Dr. Engel invited us again this year to be a part of a medical discussion over at the School of Medicine. First year med students get to ask us questions... Any question that they would like to know... I think it makes it more "real" for them instead of just text book answers. They asked about symptoms, ports, fears, trust, expectations, perspectives, alternative medicine. It was a good discussion.  


Lilly was excited this morning to take Emery to clinic and show her around. That's where we met Dr. Engel, and then we all went over to the School of Medicine together. 


Lilly and Shaylene were the stars of the show. Shaylene also has Leukemia and she finished treatment in December. She lives in Evanston Wyoming and comes all the way down to Primary's for treatment. It makes us feel very lucky that we have a short 35 minute drive to the hospital.


Look at all of those medical students in their white coats. Kind of intimidating at first, but it's a great learning experience for both us and them.


I don't know what I was talking about here, but I am grateful we had the opportunity to come again this year. I had different worries and fears last year that I do this year. My perspective is different from last year too. Lilly is getting closer to being finished with treatment and it's exciting, but scary at the same time. But, we continue moving forward and we continue choosing happiness. 


Silly Girls!





So grateful Dr. Engel is a part of our lives. Even though he isn't Lilly's primary oncologist, we love him dearly. He has a heart of gold and he truly cares about Lilly. When you see the same doctor regularly for almost two years, it's like he's part of our family. We haven't seen him in a few months so it was so nice to catch up with him. He's a busy busy man.

Friday, January 8, 2016

My Brave Girl!

video

For whatever reason, if you're on your mobile device you can't see the above video from Lilly's day yesterday. So, here are the same pictures in a few collages:





Lilly looks forward to going to clinic. She loves seeing her nurses and doctors. She was telling her friends at school that she was excited to go to the hospital and they thought she was so strange! But these great people have been a part of our lives for almost two years now. They're like family! Today Lilly got her port accessed, had her blood drawn, counts checked, received chemo through her port, saw her doctors, and had a spinal tap in the RTU. All routine things for us when we go to clinic. A few other things that we did today was talk to Paul about Lilly's eating habits. She has developed an aversion to food and will literally throw up when she eats. If it's not the same 5 things she always eats (bread, cheese, milk, chips, cereal) then she has the hardest time eating it. Every night at dinner Lilly usually ends up having a meltdown when we try and encourage her to eat what we eat and to eat healthy foods. It's awful. We thought we needed to address the subject with the child psychologist. Both Paul and Dr. Doug agree it's definitely an aversion and not just behavioral issues, so we are going to get her into some therapy and I'm hoping it'll help. I'm willing to try just about anything at this point. 

We also talked about ending dates... WHAT! Yes, ending dates! We can see the light at the end of the tunnel. Eek! So exciting yet so scary at the same time!! She will finish her IV chemo the end of May and her oral chemo in June. One of the first things Lilly asked Dr. Doug is "But, what if my cancer comes back?" That just about broke my heart. She has seen too many of her friends relapse and it's sad that she's has to think about that too. I love my Lilly Girl! She is way too mature for her age and I feel like she's lost some of her childhood because of cancer. She is so BRAVE! I want to be brave like her one day.

Tonight Lilly is feeling kind of crummy. Not much of an appetite, tummy ache, and her back is bothering her where she got her spinal tap. Tomorrow she will literally look green. But she knows how to take it easy and she knows her limits. We will watch a lot of movies the next couple of days. And then she will most likely feel much better by Sunday and will be back to school on Monday.