Phoebe Needs Prayer Today (Feb. 5th, 2012)

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10:24 am:

I forgot to mention in my previous post from last night that Phoebe’s port (in her chest) has moved, not the port itself, but the tube that goes down to the blood vessel by her heart. It is now up in the top left part of her chest. It is still allowing blood to be drawn and for her to receive fluids, but how we noticed is that she started complaining or crying when they would draw blood.

They also had to start standing her up or making her bend over at the waist to get the blood to draw. The x-ray yesterday showed the new location. Surgery team came in today to evaluate it and they will most likely have an internal radiologist try to reposition it manually while she is sedated. They would really prefer to avoid a surgery right now with her fluid level issues and because she is in her post-chemo “dip” with her cbc #’s and it will be more difficult for her to heal.

They gave her the ddavp shot at 10 pm last night even though she never “broke through” and started “dumping” urine. I asked if we could wait and see if she would do it on her own, but they said it was too risky because her sodium was up to 152. I feel like it could have been managed with fluids, but they said no. Today her sodium is 155…still climbing. The interesting thing to note, is that when she was only being given a tiny amount of fluids she started asking for apple juice and milk last night…surprise! That is the first time she has had a regular drink in DAYS and I was so hoping they would let us continue on that route. Now she is getting those fluids by IV. Grrr.

She is pooping a lot today, and now they are concerned that it’s making her lose too much fluid. Catch 22..she needs to get rid of the constipation so she can eat and feel better…she needs to hang on to the fluid so her sodium #’s can go down. It’s a lot of little inter-connected issues and it’s difficult to know how to tweak things..and what to leave alone.

I am having her sit up a lot today to get some pressure off her lung. She had OT this morning and did well. We blew bubbles for a while and she adores that. Now we are waiting to hear from the dr’s about the plan for her port and how they will manage her fluids/sodium.

Meanwhile, Deacon has fever at home and Nathan is taking care of him. I know they are a bit disappointed because they were planning in going to church this morning.

Please pray for wisdom for dr’s regarding the port issue. Pray that Phoebe’s sodium would right itself and we would be in agreement as to how that should be done. Pray that her lung would be restored to health. That her bowels would clear out and tummy pain would end. Please pray for Deacon to get well and that it won’t spread through the family.

Thank you everyone..we need some holding up day.

2:51 pm-Storm The Throne:

Phoebe needs “storm the throne” prayers right now. Her oxygen dropped to 70% and the team had a hard time shaking her out of it. When she falls asleep she breathes so shallow and makes these huge dips in oxygen. They now have her on 100% oxygen nasally and she is still breathing on her own.

Her sodium is still climbing. The last reading was 161 even after receiving the increased fluids that are supposed to bring it down. She got cloudy and distant like she does at this sodium level. Praying it will start going down since the ddavp shot at 2pm.  She needs to be around 140.

She still refuses to eat and they are discussing putting her on IV nutrition rather than the ng tube feedings she was vomiting up repeatedly.

So, it seems she is doing less and less on her own; not urinating, not eating or drinking, now she is not breathing deeply enough. She has also developed a painful sore on her bottom from the loose stool that is having a hard time healing because her white cell counts are appropriately devastated by the chemotherapy.

Lots to pray for today..hoping we have bottomed out and the only way to go is up.

Thank you all for praying with us and for our Phoebe!

8:41 pm-Calm After The Storm:

It was an eventful day to say the least. Phoebe is breathing well on her own now without supplemental oxygen and her sodium is down to 154 from where it ended up at 163. Little bug has been feeling horrible all day in that high sodium range, her speech becomes very difficult to understand and her eyes are half-mast. Hopefully she will steadily drop down to the high 130’s to 140 tonight. This Diabetes Insipidus runs her ragged.

She is receiving respiratory therapy every four hours to help with her lung function. She gave us a big scare today when she dipped and didn’t come right back up. We got her up and moving or at least sitting up as much as we could to take the pressure off that lung, but she was not feeling up to being “up”.

She pulled out her NG tube again (3rd time) and had to get a new one which I think I’ll never watch again. I’m so tired of seeing her hurt. I know she’s tired of hurting. Today we pulled her around the unit in a wagon since she was too weak to walk and when we passed the elevators she pointed to them and said “go bye bye”. She asked me later in the day to “go see Daddy and go bye bye”. She hasn’t been outside since December 31st.

So, Phoebe is officially “neutropenic, which means she is now completely immuno-supressed and has zero white cells to fight infection. She is not allowed to leave the Oncology floor with a count less than 500. This is the chemo bottom and apparently things get better from here as far as cell counts and then they do it again. So far, I’m not liking bottoming-out. I understand what Dr. Bowers meant now when he told us that we would want to quit chemo during this first 12 weeks. If this is only the beginning, yikes. I feel like I will be hanging on by my fingernails humanly speaking.

I know God will give me grace for those moments, but they still hurt. I pray that Phoebe has a ten fold measure of grace and that He whispers to her in her darkest, most confusing times. She is doing so well, still being so polite to the nurses when they do painful procedures like change her port needle and saying “thank you”. She is being so brave, I am so proud of her.

She needs to eat, and drink. If only I could explain that the tube she hates so much taped to her face would come out if she would just eat. Please pray for that. Not sure when they will reposition her port, they want to get her sodium and lung under control first. That’s all I know for now. Praying for a peaceful night for our girl..

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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