Friday, August 9, 2013

Good Results!!

We had Jaylies neuro oncology appointment on Tuesday and went over her MRI results. Wonderful news! NED! No sign of cancer for this girl! It is always such a huge relief. It is so hard going into these days, so much worry and anxiety, Kip and I swear it ages us 10 years every 3 months when she gets her scans. We feel so blessed, in so many ways. We are so blessed to have her with us, she is an amazing little girl and teaches us so much. She is recovering very well from her surgery. Hopefully this will be the last time anyone cuts into her head!! She has a harder time for the first few days then she did the first time around. More pain this time, and she would throw up everytime she took her pain meds, but she is a trooper and doesn't complain. Love this girl! She will have another scan in 3 months again then we will probably go to having it every 6 months.
Jaylie had her neuro Pysch testing this week too, at the cancer survivors clinic. She undergoes intense annual testing to follow the cognitive, mental and social effects from the high dose radiation and chemo she received to her brain. We go back in a couple weeks to meet with the neurophysiologist to review the results. This testing helps us and her teachers to allow Jaylie to be as successful as possible in the school setting. They put a 504 plan in place for Jaylie last year and they will change and update it as needed. She is actually doing really well cognitively and is average or above average in her schooling. She really is doing so amazing considering what she went through.
Due to the radiation and chemotherapy involved in treating Jaylie's type of aggressive brain cancer (sPNET), the number of adverse treatment outcomes can be extensive. These can include neurocognitive difficulties, endocrine, thyroid and growth hormone issues, hormonal deficiencies, hearing difficulties, fatigue, weight problems, fertility dysfunction and secondary tumors. We pray for the best outcome for Jaylie in regards to surviving and working through her long term effects. She is doing so well, we try not to think about the longterm effects we are starting to notice and hope and pray that they will stay minimal. Jaylie has an appointment with the endocrinologist this week too. her TSH levels are off so we will change her thyroid dosing again. We will look at her growth also as she is not growing how she should. We had a bone age test done to see how many more years of growth she has left for when we talk about and consider putting her on growth hormone. She is shorter than most friends now but she is still on the charts luckily because she started off so tall :) Jaylie is such a joy to have around. We are thankful for each day we have with her and our other children. We are thankful she is here and she is doing so very well, we can't complain! So blessed! Please remember all the other little cancer warriors in your prayers and those parents who have lost their warriors. Thank you all for your continued support and love!!!!

Jaylie and Lexi all matching and ready to celebrate with mommy daughter dates the night we got the good news :)

At Pappasitios with my mom after her results appointment

Jaylie loves loves loves doing crafts at the clinic!

Cute cousins

My Dad giving Jaylie a gift after her surgery. Thank you to everyone for all your thoughts and gifts to Jaylie! Y'all are awesome!!

Her two incisions

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Thursday, August 8, 2013

Crew is 3!!!

Here are some pictures from Crew's 3rd birthday party! We didn't do a big party like we usually do for the girls, we just had a couple families over at my parents and swam. He said he wanted to swim and wanted a hulk cake, so we did that. It was fun! We swam and sat in the hot tub, opened presents, ate pizza and had cake. He loved it! He really loved opening presents this year! He liked it ok at Christmas time but he understood it so much better at his party, it was so fun watching him! This little guy is a spit fire! He can be the sweetest thing on earth one second and then get mad about something and yell and be mean. We are working on his anger :) He is usually a happy kid and so funny. He says the funniest things and loves to make us laugh. He loves to dance for us too and does it often when we laugh at him. He loves superhero anything, Team Umizoomi, playing outside, and swimming! My mom and I took him and the girls downtown to a comic book store and he had a blast! He was loving looking at all the superhero stuff and they had a huge life size hulk! He loved it! My mom found out they had that there and was dying to take him on his birthday :) It was fun! I love my little Crew so much! His pregnancy was a big surprise to us and I wasn't too happy about being pregnant and sick right at the end of Kips last year of dental school and graduation, and then moving to Austin, but he has been the BEST surprise of my life!! Kip and I both know that we didn't get pregnant on accident. He came at the most perfect time when Heavenly Father knew we needed him. He has been such a joy and light to us since he was born. He was my angel though all of Jaylie's treatment. Without him, we wouldn't have smiled near as much :) I will always call him my angel because I knew he came here to our family right when we needed him to help us through a dark and hard time. I love this kids more than I can say. Happy Birthday Crew!