Posted on March 10, 2017
Posted on March 10, 2017Keira's little body seems to be growing weaker. She had a blood transfusion and platelet transfusion yesterday and today her counts are still low. Not horrible low but still low enough to need more transfusions tomorrow. She is in constant pain so, yesterday they ended up almost doubling the amount of pain medication she has been taking. Today she slept most of the day and when she is awake it is only for a few minutes. So, after a lot of discussions, tears, and financial planning David and I both have decided to take the rest of the school year off so we both can spend as much time as we can with our precious girl. Tomorrow will be my last day for this school year and David already began his leave. We are thankful to be able to stay home with our baby girl and make memories! Please continue to pray for Keira's little body, pray her body will start producing platelets, pray her cancer will stop growing, pray some of her energy will come back, and pray we can control her pain.
Posted on January 25, 2017
Posted on January 25, 2017I know I have not posted an update for a while. The truth is, this is all so overwhelming and at times is hard to talk about, but here it goes...Keira had an amazing time on our trip. She loved it all, seeing the panda bears, touching and feeding the dolphins, seeing all the other animals and getting to meet new friends. She pushed herself to do everything she wanted to do, but it definitely took a toll on her body. Since we have been back she has been sleeping most of the days. She hasn't wanted anyone really around her. She has been very irritable and snapping at her siblings a lot. With that being said, I totally understand why she is doing what she is doing. Keira has been having a lot of pain in her upper back. We know she has a tumor on her T2/T3 on her spine. We are not sure if her pain is because of that or not. She has barely any energy, we were hoping it was from vacation but now we are not so sure. She is back to taking Oxy and her Fentanyl patch daily and she is still hurting. Since she is in so much pain the doctors want us to definitely see the Palliative care doctor. This is a doctor that will help with her pain management and hopefully help improve her overall quality of life. We will meet with this doctor on Thursday after another apt with some doctors from CHOP, Children's Hospital of Philadelphia. CHOP has a study beginning for children with Rhabdo. The catch is that in order to get into the trial, her tumor has to have a specific protein. Mercy hospital has her original tumor sample, so Thursday we will be having a phone conference with the doctors from CHOP to talk about sending a sample of her original tumor so they can test it for this specific protein. After I give authorization, they will ship a sample to them and it will take a couple weeks for the results. If it comes back positive for this specific protein then we will most likely have to travel to PA. We are not sure what all this will entail but it could be a lot of traveling back and forth if she gets accepted in the trial. Hopefully we will know more in a couple weeks.
As for now, Keira just went back for another surgery. Today she is getting her 4 port implanted. Her last surgery, when her port was removed, she threw up in the middle of her surgery and aspirated. This time they are not taking any chances and they are doing a full intubation just to be safe. She should be out in just a little bit. After surgery she will have her IV chemo.
We have been getting a lot of questions about how people can help. Here is a link to Keira's You Caring page. With the possibility of traveling and with a new expense of a new/used van, because our other van pretty much died, and with the loss of income because someone needs to be with Keira for all of her appointments, what we need most is financial support. You all have been amazing and I know so many of you who have donated so much and we truly appreciate each of you! It is very hard for me to tell you all what we need, but I have had so many people ask, so I just wanted you all to know.
I want to thank you all for your love, support, and prayers. Thank you to everyone who is helping to make Keira's Prom an amazing success. She is so excited about it and can't wait to dance with her daddy to the song Cinderella😊 You all are truly amazing!
Posted on December 9, 2016
Posted on December 9, 2016We are home! Keira was discharged today and she is so happy to be home! Tonight we had planned on going to evening with Santa at school but she wasn't feeling the best and asked for a family movie night. So here we are, I am laying on the couch cuddled up with with Caden and Lily, daddy fell asleep on the other couch, Keira cuddled up with her sister Marissa Davis and puppy watching The BFG...I am beyond blessed!
Yesterday we met with Dr Heather and she shared a lot of information. We signed some paperwork to be sent off to other hospitals in hopes that there is something out there. Unfortunately, right now it looks like there are only phase 1 trials. We talked about an antibody study but she has to be off all chemo for 3 weeks. We talked about other studies but tried to keep in mind Keira's quality of life. It is all so difficult! We decided to plan on doing the antibodies study but while we wait the 3 weeks we will spend time talking to other doctors all over the US.
Keira has asked a lot of questions and she really wants to know everything and we have been very honest with her about it all. Right now she is just very angry, as we all are. We have talked to the other kids about everything as well and they are also having a very hard time. They will all be starting counseling to help them begin to process it all. As for David and I, well we are completely devastated by it all, and just completely heartbroken, but we are also completely overwhelmed by the generosity of you all!
I tell my other children...none of us know what the future holds, the Bible is truth and is clear that non of us are guaranteed tomorrow, this earth is not our home, and we have complete faith in Gods plan. Believe me...knowing all this does not make this any easier but it does help knowing that there is so much more to this life and we serve a God who loves each of our children more than we ever could.
Please continue to pray for our family, pray for our doctors that if there is something out there that they will find it, pray that David and I will be able to be able to take off work and do the thing we need to do for Keira and be with her when we need to without the financial concerns that come with being off work, and most of all pray for Keira, pray for her emotionally and physically. We believe in a God that can and has performed miracles, however as I have told my other kids, sometimes God's miracles are not our miracles. Thank you all for sharing Keira's YouCaring page, donating to her trust fund, and praying for our family! We seriously can not thank you all enough! #pray4K #Keirastrong