These are the days….
Phoebe picking up her veggies at the Farmer’s Market…
A water sprinkler wrestling match between brothers….
Look at those MUSCLES!!
And don’t forget MY muscles!!
Hmmm…what kind of trouble can I get into this week?
Our boys are staying with their grandparents this week and attending VBS at their church. My Mom, the outdoors girl, has been taking them swimming down at the swimming hole, having picnics and taking them to the skateboard park and then each day ends with lots of fun and fellowship at Vacation Bible School. I’m sure my Dad has been weaving his tall-tales to keep them entertained and get thier goats as well! I think I miss them more than they miss me, but I am enjoying the peaceful atmosphere of our house right now, even if it is a little too quiet.
Nathan and I are constantly trying to figure out what to do with ourselves with just Phoebe and the two of us. So far, we have done a lot of sleeping! Not kidding. I think we must not realize how completely exhausted we are on several fronts. This type of tiredness reminds me of that first tri-mester overwhelming need to sleep, the kind that causes you to sleep so hard you drool on yourself. So, we have been napping a lot and going to bed early. We made a trip to the grocery store and then to the oncology clinic of course for her chemo push this morning. We are an exciting duo as you can see. Being alone with Phoebe has been really nice and allowed some time to just enjoy her without distraction.
She has learned the “lingo” of cancer treatment. She will say “there’s my port” and lift up her shirt when the nurse asks where it is. She also says “clean, clean, clean” when I wipe her down with an alcohol swab before her shot. And maybe the most funny; when Phoebe’s DDAVP shot is wearing off it allows her kidneys to let go of the urine her body has been hanging onto. When this happens, they call it “breaking through”…so now when Phoebe fills up her diaper at that 12 hour mark, she will say “I’m breaking through!” 🙂 When the doctor or nurse gets ready to use his/her stethescope, Phoebe will grab it, put it on her heart and say “I can help you with that” and then she moves it to her tummy (because that always comes next) and says “and now my tummy”. Oh that girl. She is a funny one.
They decreased her formula feeds today since we are trying to wean completely from them. She is now eating enough table food to maintain her weight and actually gained 3 lbs in the past week! This is great, it just means we need to get her off the formula. The tricky part is that removing her formula also removes fluids and that of course effects her Diabetes Insipidus/sodium levels. It is a balancing act. We have also started giving her 40 cc’s a day of juiced fruits and vegetables which makes me feel a lot better about what is going into her body. Since chemotherapy affects the taste-buds and can often make food taste metalic, she will only tolerate certain foods and asks for them repeatedly. We keep a constant supply of spaghetti on hand as well as grilled chicken and waffles, the current favorites.
It’s nice having the ng tube because I can juice all kinds of green veggies like spinach and swiss chard and kale and deliver them straight to her belly with a syringe. Maybe all kids should come with an ng tube for veggie delivery!
In many ways it feels like life is taking on a more normal ebb and flow and that feels good. This round of chemo however, will knock Phoebe’s counts down for longer than they are usually down which means more neutropenic time when risk for infection is high. Plese pray with us that she will remain infection free and we can make it to our next round without ANY ER visits!
Thank you all for rooting for this girl and cheering us on as a family. Your encouragement means the world to us!
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:
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.
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.
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!
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.