When Lola first posted #LolasBucketList, a few awesome people contacted me about getting her tickets to a Fun. concert. What they didn’t know is that what she meant was “live long enough to go to the Fun. concert that she got tickets for on her 16th birthday in May”. Tyler and I took care of that for her last night =) It was definitely bittersweet, and I had to choke back the tears, but we had a blast!
Please bear with me while we are still in the process of unpacking and such. I use my PC for graphic edits, etc. and it has yet to get setup — so I can’t “cross” stuff off of her list until I get my PC up and running.
Lola had her consult yesterday with a phenomenal radiation oncologist at Alta Bates in Berkeley. We made the decision to have her radiation done in the Sacramento area at a facility run by colleagues of Dr. Swift. Our first appointment will be on Tuesday.
As I mentioned on Monday, the tumors in both lungs continue to grow with the right lung pressing on her trachea and vena cava. While on oxygen, her saturation levels are normal, but heart rate is still hovering around 140, sometimes reaching as much as 150, causing anxiety which makes it difficult for her to get a good breath.
As soon as we arrived home yesterday, she started to feel bad again. The four hour drive from the Bay did not help. She was up and down all night with breathing issues. The dry climate and elevation, I believe, are playing a huge part in this, not to mention we are packing to move (THIS WEEKEND!!!) so the stirring up of dust, etc. in the house is not helping either.
This morning she told me that she didn’t want me to care for her anymore and that it was time for me to just be her MOM. As difficult as it is to admit, I feel the same way. We have made the decision to move in to the George Mark Children’s House, a free standing pediatric palliative care facility in the Bay area until the house in Sacramento is ready. Right now, its all about family time and just surrounding each other with as much love as we can. Lola’s dad has been working in Sacramento since April and we have been separated for much too long. This wasn’t our ideal plan, but we are living day to day at this point.
Thank you so much for all your kinds words, prayers, and thoughts. We are so thankful. We love you all ❤