It really has been a long 7months for our family, and it feels odd to know we are done.
Truth be told, I am scared to not have weekly meetings with a doctor there to keep me updated and informed as to what is going on with her body. It feels a little like we are now in a waiting game .....she has to have testing done every 3 months for the next 2 years....and already my stomach is knotting up knowing that we have to wait 3 months to know if she is still cancer free! My brain is already thinking of all the awful things that could happen...but it also thinks positively and hopes that nothing will happen in 3 months. :) It's a viscious cycle..lol!
(Jamie-ChildLife Specialist, Michelle and Camille- her main nurses, Dr. Rosen her Oncologist, Dr. Lettieri- her Oncology Resident- we saw her the most and she is AMAZING and caring and so great with Ainlslie)
She had an amazing group of Drs. and Nurses caring for her. Although it has been scarey for us, they have keep us optimistic and have been there to answer all of our questions and concerns. Ainslie was not exactly the easiest of patients to deal with- a few nurses were kicked or yelled at (that's my girl)- but they were so kind and patient with her- I swear they must go through sooo much patience training before they can work there haha!
(Ainslie with Dr. Lettieri-she was so great!)
Ainslie was part of a study group for her type of cancer/tumor. There was no monetary compensation, and it was not an experimental study- it was just to help the National Cancer Group study her type of cancer and we were really happy to let her be a part of that. Her Resident Oncologist- Dr. Lettieri was amazing and so good at making sure we did all of the things required by the study, and ensuring that she get all the right treatments etc. It was basically a standard of care for her cancer, which required weekly visits and lab work. The weekly blood draws and chemo were hard on Ainslie.....she really disliked having her port accessed- it didn't hurt her necessarily, but it was scarey and did make her chest sore in the access spot and of course, the chemo made her so tired and nauseated. It was really hard to hold her at times so that the nurse could access her...she would struggle and fight, and I would feel so bad for her. I wished they didn't have to do it every time, but I knew it was what was helping her to heal and kill the cancer. There were times that I just wanted to leave and take her home- not that it was the hardest thing ever, just that it made me sad to see her so angry and tired!
(Brecken gives a great thumbs-up too! He is happy Ainslie is done and cancer free!!!)
Hard as it has been, our family has survived this whole adventure. It has made us closer in so many ways and it certainly has taught us to be grateful for what we have. Admittedly, I am a snob at times, and this has opened my eyes to what is important. Home is where my family is and the size of it doesn't matter. In the beginning I was sure that McKyrie and Brecken would suffer and be forgotten, and maybe they were a bit, but they have bounced back like nothing ever happened and they are normal, happy children!!
I am amazed at Ainslie's strength and courage. She is my example when things get hard. No child should ever go through what she has had to endure, and fortunately she has pulled through without any set-backs! She is strong and stubborn and beautiful and amazing all rolled into one great package and I am soooo proud of her! Our Heavenly Father has truly blessed her and helped her through all of this and for that I am eternally grateful. Thank you to everyone who has kept Ainslie and our family in their prayers. We have felt your love and been blessed by it!

4 comments:
What a beautiful happy post! Such great news!
WAHOOOO!! For reace.. Time for some hair to grow back. :)
Yay!!! So happy for her and your entire family! :) Someone told me once that I was strong enough to go through a trial I was going through, but she wished I didn't have to. That's how I felt about your family this whole time. I hope you do realize how strong you all are, but I am so glad that it is finally over.
Much love from the Johnson's. :)
I am so excited for you guys... My kids were filled with joy knowing that she is doing so well.... We will keep you guys in our prayers!
Post a Comment