She’s doing so well! Her bi-pap machine is really giving her some relief from working so hard to breathe and the difference in her energy level alone is pretty amazing. Her muscle strength is improving with her increased energy and she is more engaged altogether. It’s amazing what breathing correctly can do for a person!
The neurology team assessed her today and said that the weakness in her hands and feet is almost certainly chemotherapy induced neuropathy, but that they are unsure what is causing her respiratory/diaphragm weakness. They would like to perform an ECG muscle test which is a not-very-fun procedure where needles are placed in her skin and then her muscles are shocked to see how they respond. It is an hour long test and the sad part is that she can’t be sedated while her breathing is compromised so she will be awake for the test. This will not happen any time very soon because she is neutropenic from her chemotherapy right now, but as soon as she recovers her immune system they will investigate further. I have mentioned Guillian Barre Syndrome after having done some research, but we’ll see what the tests show.
She still has not received the Vincristine and I’m not sure that she will get this drug again unless and until they pinpoint the source of her breathing issues. That makes me both nervous and relieved. I have a love/hate relationship with chemotherapy. I’m sure most people affected by cancer do.
She went for a “walk” in a walking device today that held her upright and she loved every minute of it. I know it felt good for her to be able to be up and moving albeit with a lot of help from a support device. Her morale is something to behold, she is so motivated and really wants to be up and moving, it’s precious to see her try so hard. Tonight as I was leaving the hospital she said for the first time “I want to go home.” She saw me leaving with the boys and wanted to come too, and it broke my heart. Now that she’s been home she knows where we’re going. I don’t know if home will happen any time soon since all of this breathing investigation is about to take place, but I am praying that we figure it out and move on quickly. I am ready to have her here again with us.
Please pray that we would be able to find the cause of her respiratory weakness, that her sodium would level out and for her strength.
~Amey
An Atypical Miracle 
I love the new pictures! She looks sooo much better and more alert and glad she is motivated! I pray for her strength so she can come back home with the family soon. Hang in there. I know how hard this is on all of you but she’s a strong and brave little girl and you are a wonderful and loving mother. Your messages are always so inspiring, even the ups and downs that you’re going through. I thank you for always updating us so we can be a part of Phoebes journey.
Have been praying throughout the day. Love her. Loved seeing her so bright and alert today. Sweet girl. Praying on….
Prayers for all.
She is such a strong girl! Impressing! Bless you little Miss Miracle!
I loved seeing these pictures of her. She is such an inspiration to just keep on keeping on!! We will continue in our prayers and are lifting you all up daily! Thanks for posting!
I love seeing her in the Lite Gait!!! I am a pediatric physical therapist and seeing her upright and walking is great for her and those muscles. Praying for her and you all daily to press on and continue to fight the good fight! She is amazing! Much love to you all!
That walking contraction looks like fun! No wonder Phoebe liked it. 🙂 Praying for you sweet girl!
I am so elated to know she is doing so well after this round of chemo. Our prayers continue to be with you.
My prayers go out to this little fighter. She is a stronger little girl fighting a horrible thing, having to read that they want to do a ecg muscle test brought tears to my eyes and made my heart sink, I had it done whenever I was 17 and I would not wish it on anyone else. I pray that this little angel will not have to have it and keep on fighting Phoebe your are one strong little girl!!