AT/RT Survivor (Jan. 15th, 2012)

Standard

9:34am-Today: Today Nathan and I are meeting with a couple who has a little boy that is a survivor of AT/RT cancer and was treated with chemotherapy here at Children’s Medical Center Dalllas by our Oncology team. I am looking forward to asking a zillion questions, finding out what to expect and hearing their story. The success stories for this type of childhood cancer are difficult to find, and I am looking to be encouraged by our meeting today.

I spent a few hours yesterday educating myself about chemotherapy and learning a new vocabulary with which to discuss things with our Oncologist. I studied various chemo protocols, statistics and outcomes, adverse side effects, and the different approaches taken by different hospitals. I about drove myself crazy because there are many options out there for cancer treatment and I obviously am not well informed about any of them other than my recent research.

I read quite a bit about the Dana Farber protocol that the Oncology team here will use and it did have THE best results out of any other documented chemo protocol for AT/RT. That of course gave me some peace of mind and made me feel like we are in the best place for Phoebe although I still completely dread this process.

They told us that we might be moved to the endocrine floor first before being sent down to Oncology so that they can finish tweaking Phoebe’s advvp dosage to the exact amount, so we’ll see.

My sleep the last couple of nights has not been very good. I am stressed out in my dreams over Phoebe and her care, although I can’t ever recall specifics when I wake up. Please pray for me regarding that.

Nathan looked at a few houses last night and will see a few more today and probably make a decision so we can get moved in. Only 9 more days until chemo begins and we’d like to be moved in and have the boys set up and home school organized and ready to go so we can get back on a more normal track. We will need helpers from Lindale for that most likely and will let you know more when we find a house and have a move-in date.

Thank you for your prayers, it amazes me to see people from France, Nigeria, Australia, and other far away places leave comments on Phoebe’s Guest book. We appreciate you all and thank you from the bottom of our hearts for bringing our girl before His throne.

9:36pm-Oncology Floor: Phoebe is settling in to her new room on the Oncology floor. We now have our own private bathroom and are able to have food in the room. The ICU was nice, but the Oncology floor is more family-friendly with it’s own kitchen, fridge, coffee maker, play room, DVD and toy closet.

Honestly, I was caught off guard by the emotional response I had as we explored the Oncology Unit. The ICU felt like a place to come and stay for a short time and be discharged when you were on the mend. The Oncology floor feels like a place to live, a place to stay, a place to settle in. I never expected when we stepped foot in the ER two weeks ago that we would stay for ANY reason. I never imagined this hospital or any hospital becoming a place to set up camp, a place to go for “treatments”. *sigh…

We had a nice meeting this morning with Jeff and Stacie, the parents of Gavin, who is an AT/RT Cancer survivor. They gave us some great advice, told us specific questions to ask and were very informative about different resources that were available to us. It was nice to sit down with others who have been down this road. It gives us hope for our own journey.
Phoebe had a lot of visitors today from both sides of my family and everyone arrived just in time to see her make her way downstairs in the hospital. She walked all the way to the trains and then came and shared my lunch with me in a sitting area. It was a sight to behold her in her little polka dot dress (thank you Rovenstine family) and her brown Mary Jane shoes. After we wore her out she took a nice long nap and Grammy and I joined her.

Nathan had some success today looking at houses for rent and put in an application for one of them. The landlady knows our situation and is willing to allow us to rent month by month as needed for Phoebe rather than a full year contract which is wonderful. We know that the first few months will be extremely intense, after that, we are not really sure what to expect. Phoebe’s Mammaw (my Mom) is staying at the hospital with her tonight and I am here at Ronald McDonald House with all my boys, looking forward to a good night of sleep. This week we are still focused on getting Phoebe’s advvp shots to the right dosage to regulate her sodium and getting her healthy and strong and ready for chemotherapy treatments that start on the 24th.

She has had some tummy trouble and uncomfortable bloating and needs prayer for that and also that her fevers would go away. Thank you all for praying. It looks like we are on to the next leg of our journey on the Oncology floor.
Goodnight, ~ 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.

2 responses »

  1. I AM MARIAH TOLBERT, MY SON KYLEN TOLBERT HAS ATRT AND WE ARE FIGHTING THE CANCER NOW HIS WAS ON HIS LOWER PART OF HIS BAIN, HE IS ONLY ONE. WE ARE FIGHT AND PRAYING SO I NO EHAT YOU AR GOING THREW AND WENT THREW. I AM ONLY 18 AND STEAL IN HIGH SCHOOL, AT THE SAME TIME AT THE HOSPITAL WITH HEM 24/7 SO KEEP YOUR HEAD UP AND PRAY.

  2. I just found your little sweethearts site on another friends facebook page—I had to do a double take—I have a precious grandson, who at 10 mos old, had an ATRT tumor and an 8 hour surgery !!! He had a 10 % chance of living to see his 1 st birthday—-he is now 4 years old and doing wonderful–latest MRI done in January 2013–CLEAR !! We have our miracle grandson and we are praying for your sweet angel !! I have been searching for 3 years to discover any other child who had this same tumor as our precious Johnathan—My facebook site is—Cathy Huxhold Lorton —-please feel free to friend !!! Just a short note here to let you know we are praying—we understand how this can be–Johnny was hospitalized 10 months–had a trach for nearly a year—-we feel like we all have some sort of nursing degrees !! Hang in there–and I am thrilled you know the Lord and His miracles !!! God stood by us 100 % ——God bless you all–Johnathan’s Grammy

    Cathy Lorton

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 )

w

Connecting to %s