It is Thursday afternoon, and I am enjoying a day with my very best friends from physical therapy school, who have spent the day lifting my spirits and lifting my Christmas tree! The hard part of getting the tree ready is now done, thanks to their help, and now me and all three of my boys can do the fun part of hanging the ornaments and reminiscing about where they came from, etc.
I had my initial visit with Sarah Cannon yesterday to begin the process of starting the clinical trial. I will post more about the trial later, but for now will say that the goal is to begin the trial drugs next Friday, December 9. There are many baseline tests and medical appointments that have to be performed between now and then in order to begin. And of course, there must be no big surprises in those baseline tests for me to be included in the trial.
One of the tests required is a chest/abdominal/pelvic CT scan. That was initially scheduled for next week, but has been moved up to tomorrow because it seems that I likely have a kidney stone(s). Yes, you read that right, a kidney stone. Because my story wasn’t already hard to believe anyway – why not throw in something else? I have had stones before, and this pain is pretty telltale. I also had clinical signs which I won’t go into, but the imaging tomorrow will be definitive. I’m not sure what to ask you to pray for, because I don’t know what the other possibilities for the pain are, but I am hoping that we don’t find out that my kidneys are full of cancer. Please just pray for the CT scan, that we will get the best results possible.
My hemoglobin has been dropping in recent weeks and I am also going in tomorrow for a blood transfusion. I am hoping this helps greatly with my energy and the shortness of breath I’ve been experiencing recently.
ANNA’S BALLOON RELEASE:
1500 Volunteer Parkway
Brentwood, TN 37027
If you turn at the light onto Volunteer Parkway, you’ll pass in between an elementary school and a church. Continue to go straight on that road following signs into the park. You will veer around to the left and see a large amphitheater on your left. We hope to do the balloon release in the middle of the big open grassy area out in front of the stage. There is a small stone platform in the middle of that grassy area which will be the center of the event. A few words will be said before we sing “Happy Birthday” and release the balloons. I anticipate the entire thing will last no more than 30 minutes.
I felt I should maybe clarify how important this event is to Brian and myself, because it seems I have failed to convey that message in previous posts. This is basically equal in importance to me as a funeral, and I want family and close friends to understand that.
This is not something we plan to do again. This is a one-time opportunity for those close to us to express their love and support for our family in the loss of Anna.
I have absolutely no regrets as to how we initially handled Anna’s death. Brian and I are fairly quiet, introspective people and we initially felt it important to take care of each other, be united together and very privately deal with the grief and loss. We allowed only our parents and one sibling in town to visit us in the hospital. We had the memorial service with just us and the minister. We spent the next several days at home just the two of us, not taking phone calls or accepting visitors. I remain convinced it was exactly what we needed to do.
However, several family members and close friends expressed desperation in wanting to “do something,” to “see us,” to “be there,” “to say goodbye to Anna.” That is what this event is for. This is that opportunity. It is something we have been thinking about for months, not something kinda fun for the boys that I thought up just a week or so ago. This is your chance to support us in our loss of Anna. It means the world to us.
My best friends from PT school understand that – one flew in from Philadelphia to be here with me.
Do I expect people who hardly know us at all to be there? No (though you will be welcome.) Do I hope family and close friends will make an effort to be there? Yes.
In terms of the weather, obviously I have no more control over that than I had in it being December when she died. I can’t control it nor am I clairvoyant to know if the weather will cooperate on Sunday. I have not looked at a weather forecast at all, because I choose to pray and wait in faith. I have been praying about the day for months and have asked, just as I did for the Walker Run, that God will smile on the day and let us have good weather. I believe He is going to bless it.
However, if not, then that’s ok. He has His ways and reasons. And I know that I need to check the weather sometime in advance. SO…
What I will promise is that I will post on here by 8 pm Saturday night whether or not we plan to have the release. (Clark, I will talk to you earlier than that about separate arrangements.) If it is cancelled, it will not be rescheduled. If you need to know before 8 pm Saturday, and you check the weather and don’t think it’s gonna work out, then by all means make your own decision and skip it if it’s not worth the risk.
I will update again as soon as I know anything about kidney stones. I would appreciate prayers that they pass quickly if present, and I would also appreciate prayers that no surprises pop up in all the baseline testing tomorrow and next week.