Going Home/Methotrexate/Tooth Removal

Standard

We are still tentatively looking at going home this weekend, but we must first meet the requirements ie: stable sodium levels and Phoebe handling her tooth removal without any “blips” tomorrow. Her sodiums today dipped into the lower range after having been stable for the past few days, so that needs to come back up.

Also, it was decided this evening that she will receive her spinal Methotrexate injection tomorrow while she is under sedation for her dental work. The scary: this is the drug that at least at one point was thought responsible for the outbreak on her hands and feet. The good: the Methotrexate will be the only chemo med given to her until Tuesday, so we will be able to isolate it as the culprit if there is a reaction. The good: upon further study it is unlikely that the very low dose of MTX that Phoebe got was responsible for her specific reaction. It is thought to be more likely related to her septic shock. The scary: here we go again, and we weren’t anticipating it until next week.

She continues to become more “Phoebelicious” as they wean down the Methadone and Valium dosing. She growls in her playful manner, has more spontaneous talking, speaks in complete sentences and is more clear in the eyes. If I cough, she says “You okay Mom?” or “Bless you!”, sweet girl. She is so observant. Another not-so-great effect of the weaning, is that she is now beginning to feel all of her aches and pains from being in bed for so long. She can not lie down on her back because her lung capacity becomes too diminished and she can’t breathe, so I have to change her diapers with lightning speed to get her sitting up again. She also holds her lower back and complains that her legs are hurting, so I have spent the last couple of days trying to massage her when she would allow me.

I don’t have a lot of wind in my sails tonight since I spent the last 2 nights at the hospital, but I want to ask for prayers for Phoebe tomorrow as she has her tooth removed and receives her Methotrexate injection, that she would do well with anesthesia, that both procedures would go exactly as planned and that none of this hinders our home-going. I have three little boys who are VERY excited about the opportunity to show off their little sister to the neighbors and spend some time here at home with her!

~Amey

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.

12 responses »

  1. Oh I am so praying that Little Bit gets to go home!! I know you are all anxious for family time outside of the hospital. I will be praying and thinking of you all tomorrow. Love you so much!

  2. Praying hard for a good night and day tomorrow … hoping this precious angel gets to go home and have some special family time and see her new home.

  3. Phoebe looks great!! Ready to battle again and we will be right there with you all interceding for this sweet, precious girl.

    Praying and praying all is well and hoping you can take her home this weekend.
    <

  4. Sleep tight, Amey and Phoebe. Will be praying for a successful day tomorrow!
    May God fill your sails, Amey so that you may have the energy and strength for Phoebe!
    Love you all.

    Peggy & Mike

  5. Praying for you Phoebe and we absolutely love seeing all those pictures of you!!! You are amazing and so loved by people that you’ve never even met before:)!!!! Praying for a productive day with no negative side effects and look forward to a great weekend at home with your family. Love, love, love you and will be thinking of you all day tomorrow. And hope that mommy has the energy to keep us posted throughout the day!! ~the Williams family

  6. I pray that God Almighty watches over little Phoebe, perfectly caring for her as her heavenly Father. I have great hope that your family will enjoy spending the weekend together.
    With love in anticipation of blessings.
    Mary M

  7. I pray that all of her procedures go without a hitch. That the methotrexate is easily tolerated.

    May the lord hold you and keep you and your entire family safe and well, now and through the coming week. Amen

  8. Amey, I am praying that everything goes better than planned today, so Phoebe will still be allowed to go home. Praying that her brothers will be beside her every step of the way and that she’ll always have their love and protection.

    Bright blessings on you and your family!

    Pamela

  9. Shared this post again on fb with a prayer with it! Praying the Lord will just place protection around her today with the tooth removal and the injection of the meds! May she awaken easily and have “normal’ levels to go home! May the Lord continue to give the family strength and endurance for this marathon you are in and may you find comfort knowing everyone that reads her story is praying for her! You are an amazing family and the Lord’s light shines through you all, especially that adorable and loving Phoebe of yours!! God bless you all today and all the tomorrows!
    LeAnne

  10. Your story has touched my heart Phoebe!! I’m praying your lil tooth comes out perfectly and your methotrexate inj goes well and doesn’t hinder you from going home to see your proud big brothers! Lots and lots and LOTS of love, all the way from Australia!!! I’ll be thinking about you tomorrow beautiful girl xxx

  11. I’ll be praying Amey! You have all been in my thoughts and prayers all morning. I know it must be tough waiting out these next 24 hours to see if she can come home or not. But I am praying that she will be able to come home and be with her whole family enjoying this special monumental moment!!! Letting us know exactly what to pray for really helps to center in and focus on those needs. Keep trusting and believing God will make a way!! God bless!!

  12. Been praying all day. Keep looking for update on extraction….when I look at her in the above photos, I just wanna reach in and hug her….

    31 What then shall we say to these things? If God is for us, who can be against us? 32 He who did not spare His own Son, but delivered Him up for us all, how shall He not with Him also freely give us all things? 33 Who shall bring a charge against God’s elect? It is God who justifies. 34 Who is he who condemns? It is Christ who died, and furthermore is also risen, who is even at the right hand of God, who also makes intercession for us. 35 Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? 36 As it is written:

    “For Your sake we are killed all day long;
    We are accounted as sheep for the slaughter.”[c]

    37 Yet in all these things we are more than conquerors through Him who loved us. 38 For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, 39 nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s