As most may know, T number labs went abnormal the end of January, well because of the abnormality of them this made our team of Doctors concerned. So after many more blood draws and a Nuclear Med scan, a Ultrasound and a CT (all done here at home :)) We still had NO ANSWERS! So now a month later his labs are slowing improving but we had know idea what cause his labs to be so abnormal. We met with our Team of Doctors a PCMC about 2 weeks ago. They want to make sure his numbers keep improving before moving forward with Bone Marrow Transplant. We did a nose swab to see if he maybe had something Viral going on, and that came back + for a small viral. So that, I guess, is a possibility for an answer for us on his labs being abnormal.
We also met with our BMT Doctor who gave us some answers and guidance. A couple things are holding us back, one is T labs, he is technically not clear for BMT at this time. We want him as healthy as possible before we make him measurably sick. It increases his success rate. Also another thing is T is not 2 yet..... this is were it gets tricky. Most doctors recommend that the patient be the age of 2 before starting BMT. That is not always that case, but is still a possibility in our case. Since T has been doing well they may want to wait till he is older but then the factor of his disease and the fact that his results showed more of a complicated case (Meaning that some people with CGD have some function or more function of WBC, where T's show little to no function.) So with that more doctors become involved in getting it approve to start BMT before the age of 2.
We have another blood draw this week, and we are hoping and praying that his labs have improved greatly and that we can get some answers on where we stand with BMT. And hopefully we are on track to move it forward with this year. But if not, it maybe next year before we get this disease out of our system.
As for Myself and the rest of us, I am really trying to stay positive during all of this but it gets so hard sometimes. I guess I am in need of learning to have more Patience. And this is for sure teaching me. I am one who like answers as soon as possible and kind like to plan my life and I feel like this disease is just not allowing me to do so. There have been many times that I have wondered if I am doing what is right for tanner. Am I making the right choices for him, or do I just wait till he is old enough to make his own choices, but then I know I still have to keep him healthy as possible and that still makes me be the mean mom and not allowing him to do what ever he wants.
I honestly cannot speak for Jeff, he seems to keep me in check. He is very strong and level headed. He seems to always know what to say and how to say it to make everything seem right. I know he is nervous about doing BMT but he also just wants it done so that we can just let our little boy be a boy.. although that time will be in like two years.
Caroline is doing great. She is very loving and caring for all of us, and when it comes to Tanner she is even more concerned. If have to go to the doctor or get blood work done she is always wanting to come and is actually sometimes very helpful.
While I am playing with both kids, my worries see to wash away, I don't think about Tanner's disease and I don't worry what is going to happen, I just enjoy the moment and take it all in with one big deep breathe to help me keep pressing on and pushing forward. Its crazy how the joy and love of kids can do that to you but I, for one, am extremely grateful for it!
Sorry I was not as good at updating as I had hoped. I update more on our Insta and Facebook. I am going to try and do better about a least updating monthly, even if it is just a short one!
Here are some pictures for fun!
Day of the Many Doctor Appointments
Disney on Ice Trip
First of many Picnic's
He Had to have a whole one all to himself.. as you can see the little cut up bits I did for him are still on his plate.
She is growing up way to fast.
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