The whole family joined Lucy last Thursday at clinic for her last IV infusion of methotrexate. Lucy rang a bell, Violet had a snack, we all clapped, and we were home in about an hour. We also went up to the fourth floor to say hello to our friends that we rarely see anymore. Our grand departure was pretty anticlimactic as I waved goodbye and said “see you next week!”, since we are back for Lucy’s IVIG. At least she won’t get chemo – that will be different!
Violet also started back to school that morning and then spent a fun evening with mom at a private event at the Magic House, hosted by Friends of Kids with Cancer. Lucy’s ANC was low again, which we suspected so we are keeping her shut in at home for a while. It’s easier to do when we see the light at the end of the tunnel!
Ringing her bell! Look at that hair coming in!
I can’t believe it, we have arrived. Lucy has only two weeks of chemotherapy left! As we have mentioned, her treatment plan was uncertain. We had the option of adding a year of low dose “maintenance” chemotherapy to her existing one year roadmap. We have been agonizing for months over this decision. After a great discussion with Dr. B, and with her full support, we feel confident in our decision to decline the extra year of toxic chemicals, thank you very much. It was actually a very hard decision which is why we came down to the wire on time. The pros and cons are too elaborate to discuss, so we won’t. We have decided to face forward and move on!
Let us be clear: we are not deciding to end treatment early. Lucy has endured her full protocol; 46 weeks (51 with delays) of (we are told) one of the harshest regimens of chemotherapy prescribed to anyone, child or adult. Most of it as an infant. We had some rough patches, but Lucy has remained a champion, bouncing back with a vengeance! In fact, she is handling this last bit of low dose chemo so well that we were tempted to add more on. But I said we wouldn’t go into that, didn’t I? So, if you must know the details, ask us. But my general advice is the same response I gave Violet today when she asked “where does my poop go when I flush?” I said “it just goes away, don’t worry about it, and be very, very grateful that you don’t have to know”
Although chemotherapy is coming to an end, Lucy’s supportive therapy will not end so abruptly. She will also have a bone morrow biopsy two weeks after end of treatment to make sure she is still in remission (prayers!).
We won’t worry about any of this now. We finally decided to stop fearing what we can’t control. Last year, after leaving a delicious Thanksgiving meal behind at home in the oven to take Lucy to the ER, and also spending Christmas, Josh’s birthday, and Lucy’s first birthday in the hospital, we became very superstitious about planning celebrations. We didn’t plan anything. But we have decided to celebrate Lucy’s last chemo! In one week, we will celebrate her last chemo infusion at the Costas Center. A week after that, we will celebrate her last dose of oral chemo at home. It is from the many friends that we have met on this journey that we have learned that even if, God forbid, we are told a few weeks later that Lucy relapsed, it cannot erase the joy we will feel now, and the day that we celebrate her last chemo treatment. And so we must have faith. Faith that we made the right decision. Faith that the chemotherapy has done its job. Faith that we came to the right hospital, met the right doctor, who chose the right protocol, which is perfect for Lucy (not coincidence!). And ultimately, we must have faith that God has healed our precious daughter, forever.
Below is Lucy’s oral chemo. “NO REFILLS”!!!!
It’s hard to believe August is here, and a little surreal for me as well. To be honest, August has sort if carried a weight of doom and despair in my mind because as we tell Lucy’s story, it begins with “she was diagnosed in August”. We were in a fog for a while, but the rest of the world kept on, with September coming and going before we had a chance to acknowledge it’s significance to our new “normal”. September is childhood cancer awareness month and leukemia and lymphoma awareness month. We are pleased that life has settled enough for us to begin giving back, and we are starting with a fun, family friendly event supporting the Leukemia and Lymphoma society – the Light the Night Walk. Although it was just weeks after her diagnosis, family members walked for Lucy last year – thank you Katie, Suzie and Mallory! We are so thrilled that this year Lucy can walk with us! Or in her case, sprint, dance and spin.
We would LOVE for all our friends and family to join the Bacotts as we walk for Lucy, and other friends and family members who have been touched by blood cancer on Saturday, September 27 at 5:30 pm. Help us make our team, The Lu Lunatics (because we are crazy about Lucy, and she is fighting cancer like mad!) one of the biggest teams in the walk! Join us online by visiting our Team Page. If you can’t make it, you can also support us by donating to the LLS via any team member by clicking on their page from here (not to get too competitive, but Josh Bacott, want to wager a day of diaper changes?)
Now for the Lucy update. Lucy’s ANC was lower than normal when she had labs done on Tuesday, but still within parameters to get chemo on Thursday so off we went to clinic. She has been coughing for about a week, which isn’t all that alarming, but in the past few days it was getting pretty bad, keeping her up most of the night. But still, she was running around, playing with her sister and charging through the Costas center like she owns the place. Dr. B wanted a chest X-ray just to be safe, and I have to admit, I was a little worried too because she was showing signs of low-ish counts, like decreased appetite and skin peeling on her thumbs (weird, I know! Chemo is weird!). Thank God for Dr. B and her genuine concern and loving care for Lucy, because the X-Ray showed “a little something”. Given her history (leukemia) Dr. B and the Radiologist thought it best to treat is as possible pneumonia and prescribed antibiotics. After what I hope will be an uneventful round of antibiotics (new meds always seem to cause new issues, so we hope to avoid diarrhea, belly cramps, weight loss, which are among the common) Lucy will get another chest X-ray in about 2 weeks. Praying it is all clear then!
Thankfully, this cough hasn’t slowed Lucy down. She is happy and playful and today is starting to eat a little better, so we hope she can kick this easily. Dr. B said this could also very well be a virus, but it is best to be safe and treat a possible infection. This has been an unfortunate reminder that we need to continue to be diligent about keeping Lucy safe. I will admit that the combination of summer, lower dose chemo, happy Lucy, and cabin fever have led us to let our guard down a bit. Lucy loves to get out and explore, and Violet and Lucy enjoy playing together so much it’s hard, almost impossible to keep them from romping around together – they play full contact! With an ANC of 1,000 Lucy is in what I think of as a yellow zone, or semi-lock down. She could have easily caught a virus from us or anyone. It’s a good idea for us all to get back to diligent hand washing, toy cleaning and cautious exposure anyway since school is about to start, wahoooo!!
In an attempt to let Lucy enjoy some outdoors time and let both girls have some summer fun, I filled the water table (just a little) in the safe shade of the front porch. Lucy can’t get he central line wet, so she had to wear a trash bag. We were done with this experiment after about 5 minutes.