My "Bigs" at Niagara Falls
We made it home to our sweet Ash this morning at 9am. After driving 3200 miles, traveling across or through 14 states, playing 6 baseball games, visiting Niagara Falls, Cooperstown and the Baseball Hall of Fame, New York City, and D.C., we pulled into our driveway 13 days later! We are exhausted!
The trip was so amazing. To have that many days with my teenagers was a gift beyond description. We stepped out of the craziness of our world and took the time to laugh, to explore, to experience, and to connect. It will go down as one of my all time favorite memories ever made. My sweet Allie has decided that New York City is the life for her! Heaven help us:) My Blake has decided that there is NO PLACE on earth as good as TEXAS! Thats' my boy:) They couldn't have come away with two more different opinions. I love them both so, so much. The strain of keeping my emotions under wraps, putting a smile on outwardly, and focusing solely on my two oldest children was very, very difficult. I cried silent tears daily. I lay awake each night struggling, but knowing without a doubt that my big kids needed this time investment. I needed it too. It was the right thing to do.
Dave and Allie have just left for a four day trip together. It was his turn to step away from the constant reminder that our lives are falling apart. He's focusing his energy on our 15 year old and her very fragile heart this week. I'm so hopeful that we will reap this investment in our children once things begin to really get hard. Its only just begun and we are so, so afraid of what this will do to our young people. They love that baby sister of theirs very, very, much.
It has been so very difficult to be away from Ashley Kate. Kissing those cheeks this morning was the best feeling in the world.
I returned to the same situation I had left 14 days ago. Perhaps a little worse? She's struggling today. Her face is so very swollen that she is uncomfortable. Her blood counts are critically low again. She needs blood, but after having back to back infusions two weeks in a row her doctor is hesitant to give her more. Honestly, none of us know what to do. We don't know how to proceed or how to take care of her. Our PCP is calling to consult with the pediatric hematologist we consulted with back in April. I'm hopeful he can help give us some direction on how to proceed in the safest way possible. He was very kind and compassionate when I met him and so I'm counting on him to exhibit a willingness to join our team. In April he was agreeable to consulting, but I didn't hear back from them today. So...we sit here tonight without a plan, without blood, without much direction. I'm afraid for her. I really am. Her appearance causes me to catch my breath. The color of her skin. The bruising on her cheeks. The size of her neck and her face. I'm afraid of what this all means. We do know that her liver and her spleen are destroying, breaking down, and tearing apart her red blood cells. She has such a low white cell, red cell, hemoglobin, hematocrit, and platelet level that we know the organs are in bad shape.
Our PCP is suspicious of the formation of new blood clots. This is his explanation for the new level of swelling in her neck and face. He thinks that she may have some clots that are colonized with the bacteria that continues to infect her central line. I don't even know how we would confirm such a diagnosis. All I do know is that it wouldn't be good. He is trying to set up a mapping of her venous system by the surgeons at Childrens to see if anything has changed over the last couple of years. The line that is keeping her alive is also shortening her life with each and every infection.
My baby looks horrible. Her beauty is fading and my heart is breaking. I know that must sound so horrible, but she's always been so very beautiful that I could look into her face and allow the awful situations to disappear if even for just a moment. I don't have that now. Her appearance scares me and I know it will scare others too. No one has seen our baby for months now. They won't be prepared for the changes that have taken place. My heart hurts so deep. I'm afraid.
I'm trying to concentrate on her life. On living every day. Doing the things that I can do to make her smile. Whatever they may be. She will be 8 years old on the 4th of August. We have prepared such a precious celebration of those 8 years for her, for our older children, and for us. We need to have happy moments to look back on. I don't want to fail to celebrate for fear of regretting not doing it if I ever have to wake up and face a day that she is no longer in. I hope our friends, our family, our closest circle can come...look past the awful symptoms that are stealing her from us...and just love on my baby. She's so amazing. So very sweet. I'm so afraid it may be the last time they ever get to spend with her.
Please pray for my baby. Pray for my big kids. Pray for Dave and I. I feel the strain. I feel the distance. I feel the pain we both are fighting so hard to suppress. This is killing us. I don't want it to destroy who we are, but I fear that it has the potential to do just that. Somehow we have to manage to keep being us day in and day out while our youngest child is being ripped from our grasp.
3 months will not be enough. 18 months will not be enough. We wanted a lifetime. We have fought so hard to give her a lifetime.
I could write about a thousand different topics concerning Ash' health and still there would be more to write about. The details are many. They are confusing. They are so unfair. I try not to bring it all here for you all to sort though, but some days I can't help but let a little of it spill out. Our focus is on her happiness and her comfort at this time. I can't bear the thought of her suffering. I just can't. Your prayers are so, so appreciated and valued. Thank you from the bottom of my heart for loving Ashley Kate. It has been my biggest blessing and I hope that loving her has somehow blessed you too.