We have had a wonderful week with Phoebe at home! I don’t know how to explain the change I see in her, other than she seems more herself. Her eyes are brighter and she has more energy and it seems like she’s getting her sleep cycle back to normal. In so many ways I can tell she’s feeling better and stronger. Here’s what we’ve been working on this week:

http://youtu.be/s3Yjr—Iuc

I am SO proud of her! Life has felt semi-normal this week and honestly, I needed a break from blogging all the details. It was nice to simply live the moments and have nothing extraordinary to report, other than “she’s doing great!”.  Tuesday marks the beginning of the next round of chemo. This will be our first time doing chemo as out-patient. We will go to the oncology clinic each morning, get a quick chemo “push” through her port and then get sent home with chemotherapy to put through her ng tube. After the week of chemotherapy is complete, she will be home for FOUR WEEKS! This is good, because it means more home time, but the downside is that she is off for four weeks because this particular round of chemo will knock her counts down for longer.

Thank you all for praying for our girl, she is doing so well and we are feeling so blessed.

~Amey

This is a BIG GIANT EXCITING thing for Phoebe to be doing!! She is making such good progress the longer she is off the Vincristine and doing physical therapy. The next step is getting her to crawl and then WALKING! I am so proud of my girl…and notice how great Deacon’s burns are healing up!

Yesterday I was unsure if I would make it to the Ziglar Women conference today. Phoebe’s numbers were off in the morning and her heart rate had dropped into the 60’s at one point during the night. But, everything resolved itself by around 9pm last night and was still good this morning, so off we went to the conference! It was nice just to ride n the car with Nathan and spend some time together since we haven’t seen each other except for one day this past week.

This ‘passing like ships in the night’ gets old, but it sure does give our times together a certain sweetness. It was nice to be dressed up and out and about among the ‘land of the living’, talking with women and hearing their stories and listening to how my sweet Phoebe has given them perspective or challenged them in some way. Those comments are always a balm to me because it lets me know that Phoebe’s hardship is not in vain. That is the best gift I receive.

I was happy to see a girlfriend from junior high and briefly catch up with her and to meet a dear woman who drove from Stephenville whose story of brain cancer and loss touched my heart. Kasha, thank you so much for coming and for your thoughtful gift to me. The kindness of strangers never ceases to amaze me.

It was a sweet day of fellowship, visiting with friends and family and seeing women moved toward a closer, more intimate walk with God. And my sweet surprise when I got home….Phoebelicious tucked into her bed at HOME! She got discharged from the hospital while we were at the conference! So, I climbed into bed with my girl and as she grabbed a strand of my hair to twirl as she always does, she said “I love you SOOOO much Mommy!” Music to my ears! Cuddling with Phoebe was the perfect way to end this day. Thank you to all of the women who came out and I hope that you were just as blessed as we were.

~Amey

Phoebe is doing better today. It has been a tough couple of days trying to get her sodium to come back down to a reasonable level, but it seems that we are on the way now. Diabetes Insipidus is a tricky issue to have because all of her fluids have to be just right in order for her sodium to be level. The brain usually regulates your body fluid and sodium and the vast majority of people never have to think twice about it. That job is now completely controlled from the outside of Phoebe’s body and any little change in fluid intake or DDAVP dose sets the whole thing off. This will be MUCH easier to regulate when she is older and understands that she HAS to drink to keep her body okay. For now, she is not recognizing thirst and her fluids have to be given through her ng tube.

The other drama, (because we Fair’s are drama magnets) is that the day after Phoebe was rushed to the ER and put in ICU, Nathan’s Dad, Scott who was staying with us and helping out with the boys was taken to the ER at Southwestern hospital for severe abdominal pain and cold sweats. He was diagnosed with Diverticulitis and is still in-patient there for the rest of the week while he receives antibiotics and is put on a liquid diet for a short time. So, once again we have two family members in nearby hospitals. You can’t make this stuff up. It’s absolutely ridiculous.

In the meantime, I am trying to carve out any time I can to prepare for the conference on Saturday. I might have dark circles under my eyes and be slurring my speech, but I’ll be there! Life is messy.

The boys are doing well and Nathan is going out of his way with Phoebe duty this week so I can focus on this weekend. He has such a servant’s heart and I am so thankful for him. His Grandparents are also staying a couple of nights with us this week to sit with Phoebe during the day so we can get things done. I joked with Grandpa this morning that it’s usually the old people in the family that are doing hospital time, not the old people that are making rounds visiting all the younger folks.

We’re not sure when Phoebe will be released to come home. They are wanting to see her sodium levels find a good stable pattern before she leaves the hospital. We’re just taking it one day at a time around here. It’s a surreal life we live right now…

Thank you all for praying for us. And thank you to those who have sent us giftcards to go out to eat on dates, care packages for the kids (we have received some amazing care packages) as well as prayer cloths and blankets. And thank you to the Lawson family who hosted the “FROG’n For Phoebe” fundraiser…all of these gifts and efforts boost our spirits and I wish I had the time and energy to individually thank each and every one of you. Please know that we feel your love and support!

~Amey

Phoebe’s sodium rose to an all time high of 171 last night. She is supposed to be at a level of 140. She was severely dehydrated due to the fluid changes that were made in her diet before we left the hospital. She was only receeiving nutrition through her ng tube for 12 hours a night in th ehopes that her appetite and thirst mechanism would kick in and she would nourish herself during the day.

She does great with the eating part, but seems to have completely lost her thirst mechanism in the brain surgery. She will take a sip or two of a drink but refuses to drink more so we often give her a fluid push of water or juice through her ng tube. Apparently yesterday, after several days of being on the new feeding plan, she just got completely dehydrated to a dangerous degree. All day long she was asking for food and never seemed to be satisfied. I think her signals were confused. She knew her body needed something but couldn’t figure out what. She batted away the sippy cup every time it was offered.

I have no idea what this means for the future…that her thirst mechanism is seemingly gone, but I know that I feel total relief that her confusion and changed mental status was not a precursor for sepsis like last time. That was the biggest sinking feeling I’ve ever had…

She will now be moved to the Oncology floor and kept in-patient while they re-regulate her sodium levels and make a new fluid intake plan. The worst part about this, is that she will miss two of her home health therapy consults appointments tomorrow for her physical and speech theapies. We have been trying to set this up for two months and can’t seem to make it happen because she is in and out of the hospital so unexpectedly. She needs t o be working every day towards walking and these delays set her back.

Thank you all for praying…it was a scary night and we’re all glad to be on the other side of it.

She’s being admitted to the ICU…she is acting very much the same as she did when she went septic. She is incredibly groggy and hard to pull back to awareness. I don’t even know what to say..are we really doing this again? Please pray..

Nathan is on his way to the ER with Phoebe. She was very agitated all day and very pale, which we assumed was due to the low hemoglobin count she got yesterday. Tonight however, she started vomiting several times while she was asleep and was very cloudy and like jell-o in my arms. She couldn’t seem to hold herself up or keep her eyes open. We gave her a stress dose of her steroids which is protocol for her adrenal insufficiency when she gets sick, but she vomited that dose as well, and since her body cannot handle the stress of being ill, she will decline quickly without those steroids. This is the first time we have had to take her in for this reason although we have always known it was a possibility.

I will post an update when I hear from Nathan. Thank you for praying for our girl…

~Amey

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

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