On Nov 5 just two days after being discharged from Millers Rehab Alanna was admitted to UCLA to begin Chemo cycle 4 of 9. It was very hard for us to go back to the hospital after just getting out. We complained and cried and kicked our feet. I think I was worse off than Alanna. And Alanna was pretty bad. However we were blessed that Alanna's meds worked extremely well and the side effects were minimal. No nausea being the big one.
We had a lovely six weeks. Thanksgiving was perfect. We ended up going out for dinner and we are so grateful for whomever anonymously paid for our meal. It was such a gift and touched us greatly.
The week after Thanksgiving Alanna's doctor gave us permission to take her to Disneyland! We had so much fun that Alanna refused to leave :). Disneyland accommodates kids with special needs so very well. I felt very rested and actually felt joyful with the vacation. We had taken her last year two months before she was diagnosed. I had not realized the amount of work that I did in order to go to Disney and at the end of that trip felt I needed a break from Disney. The amount of time she needed to be carried or calmed in lines or just around the park was beyond my ability to enjoy myself, it was very exhausting. However taking Alanna with accommodations so she could enjoy the park the way it is intended was a great blessing to our family. I am so glad we did it.
Alanna got rid of her NG tube on Dec 5. Her blood counts were finally improved enough to allow her to do the G tube surgery. It went well and her belly is healing rapidly. But the very best thing about getting rid of the NG tube is that Alanna is so much more comfortable.
We took her to see Wreck it Ralph Breaks the Internet on Dec 10 she absolutely loved the movie. But the very best part is that she ate the popcorn. I know that may sound silly, everyone eats popcorn during a movie. But what you may not realize is that Alanna had not eaten anything by mouth since June when she got the NG tube put in. Now free from the NG tube she slowly munched popcorn for over an hour! The next day she continued eating popcorn. . . She has eaten a bag of microwavable popcorn now for 7 days straight! For the last 3 days she has been eating shredded cheddar cheese.
Alanna's birthday was Dec 15. She had an absolutely amazing birthday! She went bowling with her friends. This was a dream playdate. Something she wanted for months and it couldn't have turned out any better than it did. She was a 7 year old little girl being a kid, enjoying friends, playing and eating brownies. The next morning she told me that this was the best birthday ever. And it was, it really was. She made homemade pizza which is where she discovered she liked cheese again and she made her favorite chocolate chip cookie cake which she enjoyed a few bites of. Like any little girl she loved opening her presents and she was oh so very happy and we cherished a day where we could just have fun.
Tuesday, December 18, 2018
End of Rehab and Move back to Goleta
The last month and a half has gone by so quickly because Alanna has improved in health and abilities so quickly. Miller Children's Hospital Rehab pushed her to push herself. In four weeks she went from crawling to able to use a walker and take unassisted wobbly steps. We entered Millers with the hope that she would be able to walk again. We are so glad we did it and so happy with the team of rehab specialists that worked with her through physical, occupational, speech, recreational, and music therapy. Alanna improved greatly in every area.
We did spend Halloween at Millers which was so much fun. Alanna dressed as a black cat, she wore her leg braces under her costume and used a walker. She trick or treated through the hospital halls walking for 30 minutes. She was beyond exhausted by the end. The hospital gave small toys, no treats at all. Alanna has always preferred getting toys over candy for Halloween so this was amazing for her. We got our own firefighter to go with us and when Alanna was tired and ready to go back to her room our firefighter finished trick or treating for her.
Since we were at Millers for four weeks St. James Inn decided that they wanted to open the charity home to other families so Steve with the help of several members of the Santa Monica 2nd ward of the Church of Jesus Christ of Latter day Saints helped to pack us up while Alanna and I stayed in the hospital. We moved back to Goleta to live with Steve's family until we can get Alanna through cancer treatments. We had hoped to stay in LA until treatments were over but God has other plans for us. We met so many wonderful people in LA and are so grateful for the friendships we made. I was very heartbroken to not be able to say goodbye to so many people. We hope to be able to continue friendships even though we have moved for now.
But, Oh my goodness it is so nice to be back home! Oh how I have missed it. Since being home and being around people who knew us before our traumatic experience the deep understanding with friends and family is allowing my heart to finally start to mend. My daughter has had some playdates with friends that knew her before she was sick, kids that don't see her as strange with her altered appearance. She is starting to open up again to be herself because she is around people who have always loved her and known her.
Yes, the drive to LA once a week is weary but the reward of being home is great. My heart is lifting with the support I am receiving. We will get through this together. Thank you for all of you who pray for us and lift us up in the many ways that you do it.
We did spend Halloween at Millers which was so much fun. Alanna dressed as a black cat, she wore her leg braces under her costume and used a walker. She trick or treated through the hospital halls walking for 30 minutes. She was beyond exhausted by the end. The hospital gave small toys, no treats at all. Alanna has always preferred getting toys over candy for Halloween so this was amazing for her. We got our own firefighter to go with us and when Alanna was tired and ready to go back to her room our firefighter finished trick or treating for her.
Since we were at Millers for four weeks St. James Inn decided that they wanted to open the charity home to other families so Steve with the help of several members of the Santa Monica 2nd ward of the Church of Jesus Christ of Latter day Saints helped to pack us up while Alanna and I stayed in the hospital. We moved back to Goleta to live with Steve's family until we can get Alanna through cancer treatments. We had hoped to stay in LA until treatments were over but God has other plans for us. We met so many wonderful people in LA and are so grateful for the friendships we made. I was very heartbroken to not be able to say goodbye to so many people. We hope to be able to continue friendships even though we have moved for now.
But, Oh my goodness it is so nice to be back home! Oh how I have missed it. Since being home and being around people who knew us before our traumatic experience the deep understanding with friends and family is allowing my heart to finally start to mend. My daughter has had some playdates with friends that knew her before she was sick, kids that don't see her as strange with her altered appearance. She is starting to open up again to be herself because she is around people who have always loved her and known her.
Yes, the drive to LA once a week is weary but the reward of being home is great. My heart is lifting with the support I am receiving. We will get through this together. Thank you for all of you who pray for us and lift us up in the many ways that you do it.
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