Good Morning Sunshine (Jan. 7, 2012)

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9:26 am: I woke up to a beautiful sight this morning, my sweet 4 yr old, Deacon snuggled up in bed next to me. I had breakfast with my boys and then arrived at the hospital to find another beautiful sight, my Phoebe, awake and looking into my eyes mouthing “Mama” and mouthing the words to “Holy Holy Holy”, her favorite hymn, as I sang to her. She is crossing and uncrossing her legs, watching TV, yawning, squeezing my hand and being the sweet little munchkin she is. They are just waiting for the doctors to do their rounds and approve Phoebe for the tube removal. Then we will get to hear that sweet little voice and watch her enjoy eating and drinking by mouth again. Life really becomes all about the little things in this situation. Just to see her mouth a word and recognize me, shot a big burst of joy straight to my heart and took my breath away. They are all surprised that she is not fighting the tube and complaining, and I know it’s because thousands of you have prayed for peace and comfort for her during this process.

She is SO peaceful, her tremors have turned to tiny shivers every now and then and seem to be resolving. We were given a different report today about her Diabetes Insipidus than yesterday, and I’m not sure why that is, but today we were told that she will have to have her hormones regulated at least a little bit throughout her life because although the pituitary gland was not damaged during surgery, the remaining tumor cells on the surface will effect her hormone regulation to a degree. Her sodium levels are now under control and they have found the right “formula” for her body in that regard. It looks like we will have to give Vasopressin injections on our own to maintain that after she leaves the hospital. In light of everything else, that seems VERY doable! I’ll take it! The prayer request today is that the tube removal would go well and that she will rally and do all that breathing on her own. She is breathing mostly on her own right now with only supplemental help from the ventilator if she gets lazy. They said that her brain will not hurt, only the incision site, but not much and that the drainage tube in her head will most likely be removed before the weekend is over. When that tube gets removed we can hold her! I can’t wait to just hold her!! Also, she is still maintaining a little fever of 100.3 to 100.9, so please pray that that will go down to normal. Thank you everyone, we are feeling so full of hope today!

10:51 am-Tube Out!: They just took the tube out and her first word was “Hi!” 🙂 The NP then said “thank you” for allowing her to place the oxygen tube across her nose and Phoebe said “you’re welcome.” She is fully here, super sweet, and looks very relieved to be free of the breathing tube. They will monitor her for the next hour to make sure her breathing is stable. Thank you all for praying!

Our precious Phoebe has only slept 20 minutes and they really want her to sleep. The Dr’s have said that she can have no more visitors today except the person who’s going to cuddle with Phoebe.. And that is her Mama! Please pray that our little Angel sleeps for a good period of time.

7:42 pm-Saturday Evening Update: It has been a wonderful day, spending time with Phoebe awake and enjoying her little personality. She has had some difficulty getting into a good deep sleep. She seems to be caught somewhere between sleep and wakefulness and talks a lot and moves her arms and pulls at her tubes. Apparently this is not uncommon in people who stay in an ICU setting for several days where night and day seem to have no differentiation. She was also sedated all of yesterday and last night so her wakefulness is not totally surprising. Nonetheless, the drs want to see Phoebe sleep WELL on her own and cut off visitation today in order to try to help facilitate that. She was peaceful for most of the day and content to lie in bed and play with her new toys (thank you Jenn, Shelly and Dawn) and look at her new books. She is still mis-firing in cartain areas which I am told is normal while the brain heals. For instance, she will call a nurse “Grammy” or say “stop Deacon!” when Deacon is not here or she will try to bite the tubing on her arms thinking it’s food. Poor baby has been starving all day and they have held off until her sodium levels could balance.

Her sodium has been at 147 (perfect is 145) all day so she is FINALLY regulating! And because of that, Phoebe is about to get some oatmeal, a banana and some grapes and Gatorade. She has been dreaming about cookies and chocolate and has asked for turkey and waffles, but it might be a while before she graduates to those! I am hoping that a full tummy will help her sleep. Eating will be a test to see how her sodium reacts, so please pray that she stays stable. Nathan’s Mom and myself are on Phoebe Duty tonight and Nathan and his Dad took the boys to see the “Tin Tin” movie. Please pray for grace for the boys, they aren’t great at verbalizing their feelings at their ages, but it is obvious that they have had a difficult time with all the sudden change. I’m glad they’re having a fun boys night tonight. Thanks everyone for your prayers, we are truly uplifted.

 

About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th. A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle". We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms. We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated. Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope. Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

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