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| Ommya Reservoir in; Now where's my din din :D |
The first thing we were thankful for was Jon Davison and his family allowing us to stay in their condo as we still hadn't heard from the Ronald Mcdonald house. It was such a huge load off our minds and was within 4 miles of the hospital. I have always found it hard to ask for things and in this time of need I haven't had to due to so many people going out of their way to offer assistance. In this case Jon was able to offer us a place to stay when we had none. We are so grateful to them for giving us this gift!
The second thing we are thankful for is again to NBSD for their huge hearts and constant thoughts and prayers for our daughter. The support from them has been overwhelming and we are so blessed to have their army of support on our side. We are so blessed to have so many selfless, incredibly giving people in our lives!!! <3
Family support has been equally amazing and Mayleigh has had many visitors able to come see her in the past week. I know she really wanted to have an engagement party when Montana family was here but we will make up for that one in the near future.
And to all the people who have contributed to her Go Fund me: Your financial support has given them peace of mind for those future trips to Portland and moving forward with her treatment. With only one source of income due to her illness it couldn't be more appreciated as you can imagine. To know how hard people have worked to make that money then turn around and donate to our daughter is very humbling indeed and I know she and Ian are very grateful for your generosity, as are her parents!
Upon arriving Saturday, we were pleased to see the results of her predinsone had completely diminished all signs of gland swelling. Her parotid, lacramel and head nodules had all disappeared and her breathing issues seemed a thing of the past. Her thymus gland tumor had shrunk significantly and in some ways it seemed like she was locked up in a hotel room and not a hospital. She and Ian were buying time on their electronic devices and it was a day of relaxation for her from the normal daily duties. We were able to leave them to their last full day together before Ian had to return home and it was awesome to see the difference a week made since we had last seen her.
On Sunday Ian left about noon and it was definitely a sad day for her. She didn't feel like doing much and it was hard to try and cheer her up. I was really bummed cause all I could think about was If I was up there I would make sure she was happy and we would find something fun for us to do to take away the blues. I was not able to succeed, but I know the meaning behind the sadness and I knew it was a matter of time before she would bounce back. We finished the evening with a few laps around the 14th floor and the nurse checked her vitals one last time before leaving for the night. She had to be up at 5:30 to have sage wipes in preparation for her surgery the next morning. Her platelets were lower than the doctors would have liked so she had to have some added to her IV to increase blood clotting. One of the risks of an ommaya resevoir is bleeding so they wanted to not take any chances (Thank you for the millionth time OHSU for thinking of everything!)
We arrived at the Ronald Mcdonald house this time as we had gotten the call earlier that evening that we had a room. This would solidify living arrangements for the remainder of the time she is to be in the hospital so again we were blessed with perfect timing and amazing accommodations. The room is on the 5th floor of the Marriot Hotel and they pretty much give you all the amenities that a guest would have including dinners and access to a family room, play room and kitchen with many donated food items. This is such an amazing program for families and I can't imagine the total cost of what it would take to house someone for the time frame we are needing but I plan to make contributions form here forward as it truly is a blessing for us to have this opportunity. The stars aligned for us again to get in as the rooms are in very high demand.
Even though the room was perfect for our needs, the bed was comfy, the temp was on spot; I couldn't sleep for nothing. I had woken a couple times very panicky and woke up at 5:30 with a horrible nightmare about the procedure. All I can remember is this doctor holding this huge syringe saying "I put the needle in the right spot I thought...".
Needless to say I felt as if I had 2 hours of sleep; but upon waking up I felt refreshed, ready to go and confident things were going to go well.
We got to the hospital at 6:30 am anticipating her to be all ready to go. She was still sleeping. There is something that takes me back to her childhood as she lay curled in her bed. You just want to hug and squeeze them like they are 5 years old, but we also did not want to wake her as she looked as if she had finally gotten enough peace and quite to drift into oblivion.
The nurse informed us that she had to wake her up every 2 hours getting vitals and making sure the numbers were right in preparation for the surgery. They continue to be thorough in ever aspect and knowing they are thinking from every angle is reassurance beyond belief!
Things may have started off slowly but within 15 minutes she had a team of transport personal ready to wheel her down to pre-op. She has being so amazingly strong knowing they were about to cut her head open and I couldn't be more proud of how well she has held up. She has faced more in 3 months than I have in my whole life and the resolve she has shown is admirable to say the least.
Once in pre-op she was hit by 5 different people. First a nurse who got her hooked up to her new IV machine, then a couple anesthesiologists came in and discussed what she should expect from the surgery, then the doctor performing the procedure followed by a nurse that would be contacting us through the process as well as the head nurse that reiterated everything. Again, thorough does not do justice to the care she has received at OHSU.
We gave her huge lovins, assured her she was in great care and left her to her 2nd surgery in as many months. She most definitely did not deserve this to happen to her but she has taken it like a champ and with no complaints. They have told her some pretty horrific things that bring mom and I to tears and she's already processed and spewing questions back in regards to resolving the issues vs feeling sorry for herself. She is going to beat this and there is no alternatives!
We were told to expect an hour for the surgery and they have a nice little system in the surgery waiting room that shows the patients ID number and their progress. For her she began in Pre-Op and then was moved to In Room as they wheeled her to the operating room. For the next hour things were out of our control and our hopes were high that things would go well. We received a call about a half hour later and I anticipated them telling me it was over but he said they had just gotten her sedated and asleep and that within 15-30 minutes they would hopefully be done. After 40 minutes the surgeon came out and informed us that it went very well and as perfect as they could have anticipated. We were overjoyed! Knowing they were sticking a straw in her brain (in lamens terms) we couldn't help but be nervous but again I felt very comfortable after visiting with her team. They really know how to set your mind at ease.
Within another hour she was already back to her room and coming out of it nicely. She really enjoyed the pain meds they gave her compared to her first surgery and was in la la land with no pain :D
Within the next hour we were able to get her some food and she seemed very content and we couldn't be happier!
This journey is nothing as I expected it to be. Her cancer has not defined her nor given her any doubts as to where she will be with her life regardless of how grim the results have been. She continues to be confident, resilient and stronger than I could ever have imagined. She is my baby girl and my courageous, grown woman all wrapped in one. I envy her strength and will never be able to express how monumental her resolve has been to me but I do know she has surpassed my expectations of bravery and I am probably the proudest dad on the planet for being blessed with such an amazing daughter. She has had the perfect mentor in her mother so it makes sense that she is one tuff cookie!
Now get some rest; and may your dreams be as sweet as you are <3
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