A dear friend of mine from the farm sent me these beautiful pics of Phoebe. They were taken shortly before our move and I thought I would share. I miss her beautiful hair and seeing her walk so much….
Phoebe had a busy day today going to clinic for a chemo push and getting her labs drawn and then coming home to be assessed for her home health therapies. I am so thankful she is going to have all of her therapies at home and we can continue to work towards walking again. It’s overwhelming when I think of all she has been through just since these pictures were taken 6 months ago. She is such a trooper and I am so proud of her. Her heart and laughter and courage and ability to light up a room has not wavered. She is an example of strength to me each day….so thankful for this sweet girl God has given me.
Phoebe is struggling with global (all over) neuropathy that is thought to be caused by one of her chemo medicines called Vincristine. Vincristine tends to cause neuropathy in the hands and feet, but Phoebe’s case is atypical because it has also caused extreme weakness in her diaphragm making it difficult for her to breathe. A few other causes have been considered, but for now we are holding the Vincristine from her protocol and praying that her strength returns. The bi-pap machine has given her some improvement, but she has a long way to go. In this video she is trying to learn how to walk again and having fun doing it.
Today was a beautiful day and I enjoyed being outside of the hospital walls. Our friend Bere, who was on staff with us at YWAM Guadalajara is here visiting and we enjoyed catching up over coffee this morning. We spent the rest of the morning in lawn chairs outside watching the boys play a mean game of wiffle ball and waving to neighbors as they walked by. Everyone was outside today.
As much as I miss the farm, one of the nice things about living in a neighborhood is neighbors. They walk by with their dogs and stop to chat, some have brought food and invited our boys to play, others have even prayed with us in our driveway. Today we had a yard full of neighborhood kids jumping on our trampoline and playing baseball with the boys and it was wonderful. The boys have made good friends with a family one house over who also has 4 children matched closely in age with ours. On Thursday we will go see them perform in a play about the stations of the cross in preparation for Easter and the boys are really looking forward to that. This afternoon, as I watched their 2 year old daughter jump on the trampoline I longed desperately for Phoebe to be there with her, jumping, having fun, living life. Right now it’s hard to imagine that she was ever able to do things like that.
They are still playing catch up with Phoebe’s hydration and sodium. Her Diabetes Insipidus complicates so many things and I am constantly reminded of how incredibly intricate God’s design of the human body is. If your teeny little pituitary gland doesn’t work right, everything is out of whack; kidney function, your hormones, thyroid doesn’t work anymore, you won’t grow. If your kidneys don’t get the message to hang on to fluid via the pituitary glan, your body just dumps fluids and your salt gets all crazy and that messes with your mental status and your digestion and can give you a stroke or send you into a seizure. I really had no idea before all of this, how many things have to go perfectly in my body each day to make it function the way it does. It really is a miracle that all those things happen each day without us even thinking about them. The genius behind the human body is a testament to an inteligent designer. God’s creation is amazing.
Phoebe had an exciting day and got to ride in the wagon to the playroom. She also got a visit from her Grandad and got to sleep on him for a couple of hours which I know was special for them both. Her breathing is still labored and she still pushes her voice out when she breathes whuch they are concerned about. They tested her blood gas today and it came back fine, so we know she is oxygenating well, she’s just labored in her breathing in a way she shouldn’t be this far out from intubation. Please pray her breathing will regulate and that her sodium and dehydration issues will get in order. These two things will keep us from being released to come home.
Thank you all for praying for our girl ~ Amey
Tomorrow is Phoebe’s big moving day! Time to say adios to the ICU floor and head back downstairs. We are very excited about that.
The upper GI test administered today showed normal results, Phoebe’s intestines are in perfect working order. She had a bit of a rough day, and we still had some sodium issues which I won’t expound upon here because it will just frustrate me all over again. I think we are on the right track now and that she will get some relief tonight, so I feel good about that. She had some more withdrawal symptoms tonight so they gave her Ativan and she was sleeping peacefully when I headed home.
Benjamin (9), is having a difficult time and could use your prayers. He was weepy all day and struggling and we had a good talk this afternoon about missing Phoebe. He said he saw the picture in our living room of her smiling so big, taken just a few months ago and it just made him cry and he couldn’t stop. He misses her so deeply. My heart aches for him tonight, I’ve never seen him hurt like this over anything. I took him to the hospital with me this evening and as he was sitting by her bed he pointed to the “healthy” pictures of her on the wall and said “Compare that, to that” and he pointed at Phoebe in her bed and then he just cried, and I cried. She is doing SO much better, but she is still not really “back” and it is difficult to wonder if we will see that smiling, healthy girl again.
Tomorrow we are having a serious meeting with Phoebe’s Oncologist to discuss the future of her chemo plan in depth. We have a lot of hard questions, and the answers might be difficult to hear. Please pray for this meeting and that we would come away encouraged. I expect there will be tears. We are feeling pretty fragile right now.
Thank you all for your words of encouragement, letters, cards, gifts, e-mails, post comments, etc. We feel your love and prayers!