I have been blogging in a time warp about our renovations that happened towards the end of last year. We got the house functional and decent and took a break from it. The Christmas season is always busy in healthcare and also for my husband who accepts commissions. Many people love to gift his pet portraits for the holidays. So in present day late February 2022, here I am again.
There are things you may not know about my life and family. I have shared about our children and grandchildren several times. There are stories you haven't heard and I intend to tell them all. But for this one, I have to go back two years to catch you up.
We have eight grandchildren, Miss Ava is the only girl. January 29, 2020 changed her life (and ours) forever. She had been having reoccurring infections for a few months. Her local pediatrician, Dr. Elder, saw her again that week before and said he didn't like how it was continuing so he ran bloodwork. Thank goodness he did. Her white count was around 89,000. Dr. Elder had lost a child of his own to leukemia many years ago. He called our daughter and told her to get Miss Ava, pack a bag, and come to his office before going on to Vanderbilt Children's Hospital. He, of course, wanted to speak with her personally. When he did he cried.
What followed was thirty-two days of Miss Ava in a single room in the myelosuppression ward at Vanderbilt Children's. Not only was she susceptible to being sick but she had the common cold virus so she had to be isolated from the other patients on the floor. She was ultimately diagnosed with Acute Myeloid Leukemia (AML). My husband spent many days and nights there, alternating staying with her and our daughter with Miss Ava's grandmother on her other side. He had some thoughts from that time he shared on his Facebook page, here is the first one, in his own words:
This is my being brave faced 7 year old grandbaby. I figured I would make one post once I knew a little more. To answer any questions to those who saw me tagged in the prayer request. My general opinion on unspoken prayer requests, I tend to gloss over those myself. As of yesterday she was diagnosed with leukemia. This was taken right before they wheeled her in to surgery. They did a bone marrow biopsy, a lumbar puncture, and installed a temporary pic line. So there is more than one type of leukemia, once they determine the type we will know a little more which should happen tomorrow. And then they will install a more permanent pic line in her chest. (That's a port for all iv medications and such to those who have never seen or heard of one). For the immediate she will be hospitalized at a minimum a week, likely closer to a month. And a long road from there. You never think a 7 year old should utter the words "what's wrong with me momma, will I get to be an adult?" But now she has, and my daughter , Ava's father and stepfather have a huge roller coaster of emotion ahead of them. Myself and Allison and the rest of our family as well. I won't decline any prayers, and I at times am conflicted in my belief in a god, and knowing this happens to children. At the same time I don't need anyone telling me or my family prayer won't help so keep that to yourself if you feel inclined to share your non belief. The hits keep coming lately, but we will weather this storm. And if I'm delayed in fulfilling any orders I apologize in advance. Be blessed, be well and love your family. Kids are resilient and so is Miss Ava. Despite her counts bottoming out more than once she did eventually get well enough to leave the hospital. She went home, took treatment at home, and received infusions from the clinic. And for two years she gradually began to lengthen her time between treatments, regain the weight she had lost, and grow her hair back. They have a pool at home and during the summer she swam like a fish. It was low impact activity and so encouraged by the doctors. She bruised easily because of the low counts. She was able to return to school this past fall and was so happy to do so. She is bubbly and happy most of the time and hated being isolated from kids her own age.
The doctor continued to have lumbar punctures done regularly, it is part of standard treatments. (It makes me feel strange to say there is a "standard" leukemia treatment, but, unfortunately, there is.) We are grateful she did. Although it brought the news we did not want to hear. Last Wednesday my husband called me on lunch. He was so emotional I could barely understand him. That is significant because he is rarely emotional in that way. Ava's cancer has returned. She will now need a bone marrow transplant. My husband said he had been strong on the phone talking with our daughter and when he called me he fell apart. That was completely understandable. I was sort of a mess now myself. My work family rallied around me so I could go ahead, go home, and be with our family. I wasn't sad yet. I was angry. I was so angry and pissed off. Just livid really. I screamed expletives in the car on the way home. It was two days before I finally cried. It happened after I spoke with our daughter. She was telling me about the treatment plans and what the doctor had told her to expect. Our daughter told me it was going to be a tough time. I responded, "Yes it will be, but so is she." And I began to cry. I shouldn't have to tell my daughter that. This is total bullshit. Cancer is bullshit.
Today Miss Ava checks into the hospital for a month. She will get two additional access ports, have a lumbar puncture, and maybe a bone marrow biopsy again. It will be a long day for them both. Vanderbilt Children's is second to none and we have every confidence she is receiving world class care. She will have to have her own immune system knocked out - twice - to make sure the disease is gone before she can have the transplant.
We are accepting all thoughts, prayers, good vibes, spells, any of those and more. And I pray for you and yours. Hug your family tight today. For me.
Be well, y'all.