We survived our first E.R. visit and all we got was this stupid bracelet

Sunday night after having an absolutely fantastic day with her brother Keira had a fever of 101.5, for a healthy kid this wouldn't even warrant a call to the doctor but for Keira this is bad news so we called the oncologist and he sent us to the E.R. Keira didn't have Pneumonia or the flu so they gave her three types of antibiotics and we were sent home around 4 A.M. We reported to the Oncology clinic for more antibiotics on Monday and she had a fever again last night so we'll be back there today. The fever is likely caused by one of the Chemo drugs we administer at home but they can not be sure that her central line is not infected so we have to get the antibiotics and hope that the fevers stop soon and there is no infection.

There will never be a medicine or therapy as powerful as a twin

Keira came home from the hospital last night around 7PM. Over the course of 30ish hours she had five different types of Chemo therapy administered. Amazingly, she is doing great and took it all in stride. Today she woke up with what seems like boundless energy and she has been playing with her brother all morning. I uploaded a video of them being silly. It is so nice to see here playing and having fun, I was not expecting her to have so much energy and be in such great spirits. Her brother can really bring out the best in her. 

Keira's treatment road map has changed since we found out that she is not in remission. She will require more intense Chemo and the treatment course has been lengthened from 2.5 to 3 years. Her doctors fully expected her to be “good risk” but now she is considered “high risk”. This sounds worse then it is, basically her curability rate changed from 80 to 90 percent to 75. Obviously this is not what we were hoping for but it could be much worse. At this stage, they expect to be able to treat her exclusively with Chemo therapy and there is no reason to believe that she will require a bone marrow transplant or radiation. That is really good news and we'll take what we can get

As you can imagine this news was difficult for us to hear and process. We are doing the best we can to be there for Keira but if I'm being honest our little girl is lending us some of her strength. I've never met a more courageous little girl.

Keira will go in for blood transfusion on Tuesday and more Chemo later in the week. As always the positive energy and good vibes that everyone is sending us means the world. Please keep Keira in your thoughs and prayers!  

Back to the hospital

We found out today that Keira is not responding as well to the therapy as they thought. The lab was able to determine that she is not in remission like she should be at this point. She will require more aggressive Chemo that has to be administered in the hospital so we'll be headed in tomorrow for two to three days.

Preliminary results look good

I spoke to Keira's doctor today. The preliminary results of the biopsy look good, she appears to be in remission. We will know more when the lab results are back but they expect to confirm that she is responding well to the therapy. On Thursday we'll meet with the doctor and hopefully they will have the full results.

That giggle is the sweetest sound in the world.

Keira has been off of the steroids since Thursday morning and she is pretty much back to her old self. She has been sleeping through the night, eating like a regular kid and is in very little pain. The past day and a half have been amazing. She played in the backyard, went for a walk and had two play dates where she actually got off the couch. She even asked for some of her Christmas presents and played with them. This morning she asked me for a cheese stick at 9:30 and I told her that it would be her only one for the whole day and asked if she was sure, she said yes and I gave it to her. She took a bite smiled a huge smile and said “except I already had the one that Daddy gave me” then she giggled and told me she tricked me. It was adorable. She has been so incredibly mature and too tired to be anything but perfect for the past month so seeing her behave like a four year old actually brought tears to my eyes. I can't wait to hear back about the results of her biopsy. I know when she starts back on Chemo this week it will be tough on her so it is nice to see her get a break and be able to be a kid again even if it is only for a few days. 

Saying goodbye to steroids!

Keira's surgery went well, her port is in place and the PIC line is removed. The results of her bone marrow biopsy will be shared with us early next week and depending on the results we'll find out what the next round of Chemo will be like. Everything that we've been told so far about Keira's treatment has been based on the assumption that she will be in remission as of today. Hopefully that will be the case and the next 2.5 years will be Chemo to make sure she stays that way. We are very excited that Keira is going to be off the steroids!

Surgery bound

Today Keira was cleared for surgery. Her white blood and platelet levels were just above where they had to be so she will be put under tomorrow around 10 A.M. to have her port implanted. They will also perform the bone marrow biopsy. I've attached a video that we made in the hospital on 12/7 just because I think it is really cute and I didn't get around to adding it sooner. I promise to update the blog tomorrow and let everyone know how surgery went.