Oncology Meeting (Jan. 13th, 2012)

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9:01 am-Physical Theropy: Phoebe is doing her Physical Therapy right now and she’s doing great! After this she gets a bath and I’ll update as soon as she’s done.

10:24 am-A Great Night: Phoebe (and her Mammaw and I) had a great night of sleep! It seems that her tremors are gone altogether, that her sodium is finally being regulated with her addvp shots and that she is able to actually sleep with her eyes closed and being still. This also makes for a much better night of sleep for those of us who are with her all night!
This morning Phoebe had close to an hour of Physical Therapy. She played bowling and had to roll the ball into the pins, walk over to the pins and squat down and pick them up with her left hand and set them back up on the platform and start all over again. She did this about four times and then went for a walk all around the ICU floor. All of the nurses and doctors stop and smile and cheer her on as she totters by. She was much faster today with her walking and her balance was stronger too. She isn’t really thrilled to be having to get up and get moving, but she did seem interested in getting out of her room and checking out the unit.

Now she has just finished up her bath and some sitting-up time in her special purple chair. A morning of exercise and a nice bath should be just the formula for a nice long nap very soon. Phoebe has been eating like a champ, thanks to the steroids that are keeping her brain swelling down. Her favorites so far are grapes, bananas, oatmeal and broccoli. I love seeing her eat because she has lost so much weight since the beginning of this ordeal and is so thin. I miss those sweet rolls on her arms and folds in her chubby little thighs. I also want to see her gain as much weight as possible before chemo starts.

We did not get to meet with the Oncology team yesterday so I expect that will happen today. The neurologist did come this morning to assess her and mentioned that we would likely be in ICU for another week until she is completely regulated on her ddavp shots and they see her sodium completely level out. We will continue to give her these shots when we leave the hospital and possibly forever this will be a part of her life. The shots will be given twice in a 24 hour period. This is much the same as someone who has regular diabetes and regulates with insulin shots. As her brain swelling completely abates, we might see an improvement in this area. Praying for that!

Phoebe looks great today and we are enjoying her. Thank you all for keeping up.

7:36 pm-Update Coming: Just wanted to let you all know that we had our meeting with the Oncologist today and it went well. We are about to head over to the Ronald McDonald house with the boys while Grammy and Grandad (Nathan’s Parents) will be staying the night with Phoebe. When I get the kiddos settled in to bed, I will post a detailed update on Phoebe’s treatment plan.

As for the Phoebster herself, she is doing great. Her sodium levels have been staying regulated with the new injections and she is eating like I haven’t seen her eat in a couple of months. They are unsure if her brain is signaling her body that it’s full when she eats, so we have to watch her intake. Today she has taken several very peaceful naps and enjoyed seeing her brothers. She even gave Daddy a belly laugh tonight which was so incredible to see after watching her go through so much the past 2 weeks.

It has been a good day. There is a lot of hope around here, and an abundance of peace. It almost makes me think there are people praying for us out there. *wink*

I will update more tonight. Thank you all for keeping us in your hearts as we go.

10:06 pm-Oncology Meeting: We met with the Oncologist today and came away with many of our questions answered. The first bit of news to know is that if Phoebe continues to do well tonight with her sodium levels we will be moved downstairs tomorrow. “Downstairs” means that we will be moved to either the Neurology floor or the Oncology floor depending on where they think she needs to go from here.

They are going to continue to observe her sodium levels and then they will do some pre-chemo testing so they can get baselines to operate from while she is in the midst of chemo. For instance, they will test her hearing right now so that they can test for any hearing loss during chemo. Mostly, they want her to continue to get healthy, eat, stabilize her mobility with physical therapy, get her moving, and get her ready for chemo-therapy. January 24th is the target date for starting chemo.

That leads me to our dilemma. We need somewhere to live nearby, and soon. We are hoping to rent a house for at least six months and then re-evaluate when we know what’s going on with Phoebe. The Ronald McDonald House is a wonderful place to stay, but only 5 people are allowed to a room and only 1 room is allowed per family. With Phoebe coming home with us, we will be too many to stay together and all that aside, there are only 2 double beds. So, we are looking for a house to rent either in Irving or somewhere else within a relatively close distance to the hospital.

This will allow us to have our boys nearby and not have to be separated during the 4 and 5 day chemo treatments each week. This will also allow my mother to come and help with the kids home schooling. It will afford us somewhat of a family life during this process and hopefully make the transition to our “new normal” better since we’ll be together as much as we can. Nathan will take some sabbatical time and is looking into serving when he’s able to with YWAM Dallas from time to time. His Spanish and love for kids would be a great asset to the ministry there.

The first 12 weeks and few months of this chemotherapy protocol will be extremely aggressive. Our Oncologist said that any time Phoebe has a fever during her treatment (which will happen) we must bring her in any time of day or night to start her on IV antibiotics because she will be immuno-compromised and at risk for a blood infection which can be deadly. He said it will be rough. He said we will want to quit. He said if we can make it through the first 12 weeks, things will get better.

This 12 weeks I dread like no other thing before in my life. To inflict pain and suffering on Phoebe is so counter-intuitive, so against every mother-fiber of my being…but the 50%…. So, we move forward.

We have had several suggestions, ideas and recommendations from others regarding the best path of treatment for Phoebe, and although we welcome those ideas, we feel a peace about where we are right now. We have the full support of our loving family and friends, they are nearby and able to help, and we have been impressed so far with the care and concern we have experienced here at Children’s Medical Center. We will stay here for Phoebe’s treatment.

So, this is what we know for now. Things may change, but for today, these are our thoughts and leanings and this is the new information. I can look back over the past several months and see how God has been preparing me for this in the gentle way that only He can, and I am grateful for that. We both sense His leading and also now understand the doors that were closed to us over the past several months that didn’t make sense at the time. Our times are in His hands, Phoebe’s times are in His hands and in that we rest.

I need prayer for “fear of the unknown”. The unknown is a scary place for me to hang out, so I am finding peace in staying 100% in the present, but fear tries to wiggle it’s way in at times and overwhelm me.

I just asked Nathan what he needs prayer for, and he said that I summed up exactly what he feels too, “fear of the unknown”.
Please pray for our boys. Being in between places without a house and a schedule and routine has been difficult. Please pray that they would be given grace and that God would minister to them in the areas we lack during this season.
Thank you all for the strength you are offering us, we need it.

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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