Mixed Bag of Blessing

Standard

It’s been another “mixed bag” kind of day, but I am ending the evening feeling blessed just looking over these pictures from our last week at home again. This morning Phoebe had her hearing tested and for the first time her test results showed that she has some high frequency hearing loss caused by a chemotherapy drug she receives called Cisplatin. It was sad to sit in the same room with her and hear sounds that she didn’t. I am told that this will not likely affect her speaking ability, but will probably make it difficult for her to hear sounds like “ssssss” or “ttt”, rather than lower tones. We are not altogether surprised, as we were warned that this particular drug causes high-frequency hearing loss, just a little saddened for Phoebe. She will receive Cisplatin again this round of chemo but at a 50% reduced rate. And I would take hearing aids over cancer any day.

After her Audiology test we went to the Oncology clinic and she had her port accessed and labs drawn. All of her numbers looked good and they commended us for a great job maintaining good sodium levels with her DDAVP shots. After the balancing act of all those meds for a week, it felt good to know we were on top of things and she was doing so well. I felt like I had passed a big exam with flying colors!

She wasn’t very excited to be back at the hospital and asked to “go bye-bye” several times. I ached for her because I knew she was feeling anxious and sad about being here. She perked up when we got to her room and I mentioned eating. She has been taken off food restrictions and can now eat whatever she wants! She had 2 bites of spaghetti, some applesauce and some milk and she was thrilled! It was just a little, but it’s a start.

She lookes so good, doesn’t she!? Her strength is improving each day, her breathing is much better, her silliness is back….I am just beaming inside with how great she’s doing and how far we’ve come in just a few weeks.

 

Tonight her chemotherapy infusuions start and will run over the next four days. If she tolerates it as well as she did this last round, we will be looking at another week at home in about a week or so. In 2 weeks she will have an MRI to check for tumor, and those days are always nerve-wracking. But for now, all I feel is hope and an expectancy of good things. It was a magical week at home and we are praying that she comes through this round of chemo just as beautifully.

~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.

26 responses »

  1. I love, love, love these pictures and yes, she looks sooo good!! I’m so glad you all had a great week with her at home! I will continue praying every single day for little Phoebe and for you all and hoping this week will be as smooth as the last round of chemo.

  2. Thank you for the update! Sad to hear about the hearing loss but praying that it replaces any other negative side affect that could be much worse. Love that all went well over the week, she looks so happy and strong! Great job with everything, can’t even imagine how much you’ve learned over these past three-four months. Will continue praying and fighting right along with you Phoebe, hope you know how loved you are!!!!! The Williams Family

  3. I absolutely LOVE the pics you’ve been posting from her stay at home. I am praying for her sweet ears to be protected from chemotherapy and that she does well with this round and can head home again soon.

    Hang in there!

    Much love,
    Stacie Smith

  4. Oh Amey,
    reading this makes a bit my heart heavy. We have been praying that Phoebe will not have an hearing damage. But maybe God will be healing it one day – we trust in him. Until then I can only tell you that they have hearing aids for children in great colors and that Phoebe will soon get used to it. Luisa is toleranting them since she is 8 months, cause she realises the benefit. Phoebe will too!
    Thanks for the pics they are great and each talks a language of love and peace. Glad you did so well with the numbers at home and glad that Phoebe is looking so much forward of going back home. That will make her let the time fly easier.
    Praying and Believing! The Lord Almighty reigns and he is for us!
    Hugs for the cutiest girl on the other side of the ocean!
    Chris

  5. I love these pictures, Amey. Beautiful. Sunshine + Phoebe = Gorgeous! She takes after her mama. 🙂 I’ll be praying this week for a good round 4, and thanking God for His blessings from these past weeks for you all. Love you!

  6. She DOES look good! So happy to see and hear that she had a good week. I continue to pray for complete healing and recovery. God bless you all through round 4…..thank you Lord for strengthening Phoebe.

  7. What awesome news and such great photos of her. She is such a beautiful little girl. So glad you were able to enjoy time with her at home. Praying this round goes as good as the last so she can go home again soon!
    Kimberly in Missouri

  8. Yes, it’s surely a mixed bag…So, so happy that Phoebe was well enough to spend the entire week at home! That’s what we were praying for. We’re now praying for Round 4.

  9. Amey and Nathan, Matthew our oldest has some hearing loss from many rounds of malaria treatment from our Africa days, when he was very little. He sings, has muscical talent, is a deep thinking writter. We just always had to make sure he was on a front row at school. Praying for Phoebe and this round. Hang in there.

  10. Love seeing those pictures of that sweet girl at home!! And yes, I agree with you, hearing aids over cancer ANY day. 🙂 Praying that she will be there with you again soon and that this round will be even “easier” on you all!

  11. I say “easier” but I realize there is NOTHING easy about this journey. I just couldn’t find a better word… Praying there are no complications, sickness, etc. with this round and that time flies by until she can return to you all as a complete family!

  12. We are praying for Phoebe to not have any hearing loss, however, if that is the worse thing that could come out of this situation. It can be dealt with, & I will be grateful if that is the worse that happens. Phoebe has taken our hearts, & thoughts these past few months. My husband had a stroke a couple of years ago, & his memory isn’t too good, but when we pray at night, he gets on his knees, & never forgets to pray for the complete healing of Phoebe, & somehow I feel his prayers get all the way to heaven. Thank you so much for keeping us informed about this precious little girl. What a testimony she is going to have one day.

  13. Prayers sent your way always! The pictures are great! Phoebe is beautiful! And so thankful you had a great week with her. Looking forward to her next week home, and the stories you will share with us. Our Lord is the great Physician….and He is always watching His patient!!!

  14. So thankful for the wonderful week you all had together. Praying that Phoebe will not lose her hearing but regain it latter. God can do anything, and He has done a lot already!!! Praise His Holy name!!

    Love the beautiful pictures of your time with Phoebe at home. She looks so happy and so does everyone else that is in the pictures with her. She is one of those people that light up a room and keeps it lit up with her smile!! Contagious!!!

    Praying for this round to go well, and that she gets to come home again for another round of fun and family time. Making memories!!!

    God bless,
    Shawna

  15. Praying for your recovery, God is able to do what man may not be able to do, Keep faith, we are with you in thought and Prayer.

    Edna Ernestine Boen
    “In God We Trust”

    Posted by Cecile Forse…received from a prayer warrior

  16. I’m so glad you had that full week at home and she’s eating some and that you passed your “at home” test administering all her meds. I’m thankful for all the moments of her being home that you didn’t tell us about and that YOU also had a week away from the hospital for the most part. Praying that this round of chemo goes just as well and that grace is abundant for little, precious Phoebe especially now that she’s been home and wants to be there. I love you and my heart is with you everyday.

  17. Yes, Amey, she does look wonderful! My favorite is those little round cheeks and, as I always say, that angelic mouth. She also looks so “Cherished”. Her hair, or lack thereof, makes her look younger than she is- not like she is sick.
    I wish her puppy could talk…. it is written all over his (or her) face… LOVE, LOVE, LOVE.
    God Bless the Phoebster and all her family!
    Praising on to Victory,
    LaNell

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 )

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s