Monthly Archives: June 2012

Maintenance Phase~

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We are already home after two days of in-patient chemo and we will return to clinic tomorrow and Friday for two more “pushes” of chemo as well as labs.  So this is what maintenance phase is like? Wow! And the only reason we were in-patient for two days is so that Phoebe wouldn’t miss out on physical and occupational therapy while we wait for her home health therapies to get set up. Chemo is now an out-patient afair!

All day long people who have worked with Phoebe throughout the past 5 months were stopping by her room to peek in and say good-bye. Many of them watched and waited with us during those touch and go days in the ICU and seeing Phoebe as she is today was such a tremendous joy for them. Just watching their faces and seeing how much change they were seeing in her felt so good.

Saying goodbye to her Physical therapists and her Occupational therapist was bittersweet. Phoebe regularly asks ‘Where’s Erin?” or “Where’s Brittany?” when we are at home, so accustomed is she to having them be a part of her daily life. These people have become a part of our family and we are so grateful to have such a wonderful team of loving healthcare professionals  for this journey. They love Phoebe and we in-turn love them!

I’m sure we’re not completely free of the Oncology floor forever, but it sounds like from here on out most of our hospital time will be spent in the clinic in the infusion room or getting labs done.  It’s hard to believe we are out of the induction phase, there were times it felt like we would never be able to leave the hospital and care for Phoebe at home without all of that equipment and constant monitoring and the safety of doctors nearby. But here we are, and feeling so carried by God through it all.

We have so far to go still, 9-10 months of chemotherapy and lots of clean MRI’s to be had, but at least in some way it feels like more of life is happening at home now. Right now we are trying to get Phoebe back to eating table food and drinking fluids by mouth exclusively rather than taking formula by ng tube. She is now only on formula and water at night and off the backpack for the entire day. Her sodiums of course have been swinging around due to all of these fluid changes and the chemotherapy, so please pray for us as we try to get that all balanced out again. I have wished so many time that I could have a test kit for Diabetes Insipidus to test her sodium like the blood sugar tests that exist for sugar diabetes, but apparently it takes an act of congress to get approved for one of those…so we just have to wing it. I don’t get it.

The boys are doing great and Deacon is almost completely healed. Nathan and I are hanging in there although I can’t ever remember feeling more exhausted in my life. This is a different kind of exhaustion and it seems regardless of the amount of sleep I get, I feel wiped. I think we could both use prayer for that.

I almost forgot the highlight of my entire day, and I wish now that I would have taken video! I got to see Phoebe go from lying flat on her stomach to pulling herself into the crawl position and then pushing herself up to sit on her bottom all by herself! The new neuropathy medicine she is on really seems to be improving her ability to withstand more weight on her extremities. I was so proud and we had a big clapping, whooping and hollering session over that! I can’t wait to see her take her 2nd first steps!

I’ve always loved this one of Phoebe and Nathan…..

Thank you all for staying on the journey with us…we are tired and full of HOPE~

~Amey

Back For the Next Round….

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Phoebe had a great time at home this week…she got to be here to celebrate Averic’s 8th birthday, visited with old friends who are moving to Maine, made her first visit to a roller skating rink and even took a trip to Barnes N Noble!

When she wasn’t busy being busy, she took advantage of some snuggle time with her brother and turned it into a nap…..

Averic looks like he’s ready to get up, Lol!

Today we took her back to the hospital and she started her next round of chemo. When we arrive at her room on the oncology floor each time we go in-patient, she says “No Mommy, I don’t want to…” and it breaks my heart. She knows that she will be staying and not coming back home for a few days. She actually refused to sit on the hospital bed today and instead spent the entire afternoon and early evening on the couch. I think she was in denial…poor little bugger bean..

All in all, it was a great visit home. I would like to see her sleep better at night, level out a bit more emotionally with the steroids, and drink more fluids by mouth. Her home health Physical therapy consult is on Thursday and I am glad that we will have that in place for her now when she is at home.

And the week was touched with sadness too as we learned that Maddy, one of Phoebe’s AT/RT friends in Florida, received devastating MRI results after her chemo treatment was completed. There is no recourse for her, only to keep her comfortable. Please pray for Maddy’s family tonight…these families are so dear to our hearts.

~Amey