Today seemed almost normal, in a way. Tanner had a lot more energy and her personality returned to her. She spent lots of time bossing Jake around telling him to bring her things — see, normal! But, not really normal… she still can’t really walk. She can go about 10-15 feet and then it’s just too much. Today, Jake gave her an old cane that was in our umbrella stand and said, “help Tanner walk better.” Seriously, he did. And she did. The cane is sitting by her bed as she sleeps right now. She used it all day. It really helped and gave her a sense of independence (she’s been holding someone’s hands until now). We’re really worried about her legs. She can’t walk partially because it is painful, but she also just seems to have a lot of weakness. We suspect it is a side effect of one of the chemo meds.
Tomorrow, we go back to Vandy for a spinal tap and chemo to the spinal column, a bone marrow biopsy to see how effective the chemo has been and her IV chemo. They expect to see less than 1% blast cells (down from 95% just a week ago). This just gives you an idea of how brutal this chemo is. She’ll be under for these procedures, so no pain there. I’m praying that she doesn’t have great discomfort afterwards from the bone marrow biopsy, but suspect she will.
So, the appetite increase they promised as a result of the steroids has finally arrived. Just in time, Tanner looks emaciated. She ate, and ate, and ate. Chicken and tater tots for breakfast. A cheese sandwich, oranges, banana, a slice of bread. Had ice cream sundaes at 9 am this morning (thanks Rosemary, for the ice cream and fixings). Why not? Then Tanner says, “Do we have any mini corn dogs?” So off to Sonic we go. I told Tanner at bed time we were having an eating party at 4 am. She can’t have anything to eat after 5 am and I don’t think she’ll make it until 1:30 pm when her surgery is without gnawing her arm off. She requested bread and gogurt. This is a weird new life, for sure.
Love,
Beth
I hope you’ll talk/correspond with my daughter, Larisa, about what the doctor recommended she do about Lily’s leg weakness. Lily could hardly walk anywhere at first, but they started her on some supplements and physical therapy, and it has made a difference. Of course what works for one child might not work for another, but it would be worth talking about. Good luck with the steroid hunger!
I know that you don’t know me, but my father was the minister at 1st UMC in Trenton for several years and through that, I came to know John and his family. I just wanted to let you, John, Tanner and your entire family know that I am praying for all of you, as is all of my family. I have a 5 1/2 year old boy and a 3 year old girl and cannot imagine what you all are going through. I have found myself reading this blog and crying and praying that GOD continues to give you all the strength that you need to get through this.
So glad you had a good day! Don’t let the next few days get you down – more and more and more good days are ahead!! A few years from now Tanner will kick-box Jake across the sandbox and you’ll barely remember the scary leg weakness she has now. (Unfortunately, Jake will likely return the favor with a roundhouse of his own, and it’ll be on in the backyard …). Have faith and stay strong and know that you will get through this week, and this month, then the next six, and then it gets better!
Much love and many prayers – RP
Glad Tanner’s appetite is returning!! That’s really good news.
Hope Lily’s mom can offer some advice on the leg pain. Praying for positive reports from the biopsy, and very little pain from today’s activities.
Much love and constant prayers…
b
Beth and John, we just heard and want you to know we are praying mightily and will continue to do so. I will light a candle and keep it burning. May God give you the strength and perseverance to get through this. You are an amazing young woman and you will. You are Tanner’s hero. Hang in there and may you have some peace today. We love you, Cindy 🙂