We’re Home

Well, we’re home! Came home yesterday afternoon. Tanner was in the worst mood all morning at the hospital, but as soon as we got into the wheel chair to go home, she became her normal self again. Hugged the nurses and thanked them for taking such good care of her, played with her new iTouch in the car on the way home and had a tear-inspiring homecoming reunion with Jake. I thought, “This is going to be so much better than I thought. She’s going to be just fine.

Then, she got tired and took a nap. And woke up screaming, in pain, cranky, etc. My heart sank. The rest of the day was a battle. It’s so hard to know what to do. The physical therapist and doctor say she needs to get up and walk so she doesn’t lose her strength, but she feels so bad. Convincing a 5-year-old to do something they don’t want to do because it is for their own good is futile. So, we feel a little lost. Think I will call a friend whose child has leukemia and see how she coped. Maybe you just grit your teeth and barrel through until the end of this awful steroid course (another 25 LONG days) and hope she is more reasonable after that. She will still take steroids for 5 days a month in the next phase, but not every day like this. These steroids seem to magnify the kids’ worst traits until they act that way all the time. It’s great fun!

One good effect of the steroids is the increase in appetite, but we haven’t come to that yet. She still doesn’t seem to want to eat but one meal a day. I just can’t bear the thought of her losing any more weight. Today, we finally managed to entice her with the idea of a bagel with strawberry cream cheese from Panera. So, off John, his mom and Jake go to Panera to bring it back before she loses her appetite again. Once those steroids start making her ravenous, I’m going to let her eat like a banshee — fatten her up for the next phase.

But, still, it’s nice to be home. No one woke us in the middle of the night to take her vitals, flush her IV or stop the infusion machine from beeping. What a blessing. She was still up quite a bit with pain and nausea, but rested better for sure.

One note: we are flush with gifts for Tanner. People have been so generous. Some she just hasn’t even felt good enough to open. So, again, if you want to do something send a donation in Tanner’s honor to www.lilysgarden.com. Knowing that we might be able to help save some other family from this horror is the best gift we can get.


4 thoughts on “We’re Home

  1. Tanner we are so happy for you that you are home. Hopefully everyone will get a little more rest. And when you feel up to it you can play with your own toys. You are a strong girl and we are still praying for you and your family like crazy. Love, Will and family

  2. Beth,

    We are so glad Tanner is home and will pray that you get through these next 25 days of steroids. We made a donation in Tanners name to Lily’s Garden last week. What a great program – we will start wearing the bands when they arrive. Hugs to you all.

    Jen & Olivia

  3. Welcome home Tanner. My son is only 7 months old. I tell him your story and he seems really fasinated by it. You have been on such a big and difficult journey. You will have a great story to tell your children one day. Stay strong, and when you feel bad, I think a big hug from your mom or your dad will really make things much better.

  4. Beth, I just heard about Tanner and your situation. I am so deeply sorry that your family has to endure this. My husbands first cousins daughter has the exact same thing. She is about a year into it and is doing fairly well. She had lost her hair at Christmas and always wore a cool scarf. Her hair is already coming in nicely. She was recently in the hospital for an infection so you are wise to keep sick people away. The good news is that is it curable. I know it is so much to go through and we have already prayed for Tanner and your family. Please let me know if I can do anything. I will talk to my husbands cousin and maybe you two can talk and so she can help you somehow. Only she truly knows how this feels. You are in our thoughts and prayers but I KNOW things will only get better. Take care and dont hesitate to call. Sherry

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