ICU: Phoebe Fights Her Way Back

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I was right, my 3am party girl is back, and last night she was in no mood for sleeping so we partied UNTIL 3 am and then again at 5 am and here and there in-between. Then we got up and prepared to go downstairs for a dye-contrast scan to see how food moves through Phoebe’s tummy. She finally fell asleep in the hour long scan and I snuggled up on a bench and went to sleep too!

The scan showed that Phoebe’s tummy empties at half the rate of the average child her age. No wonder she doesn’t tolerate the higher volume ng tube feeds, the food just sits there in her tummy for a while building up rather than digesting at a normal speed. This is progress! We have 1 clue about her tummy distension, now more tests are needed. On Monday she will have another dye-contrast to see how food moves through her intestines and the scan will show if there are any constrictions or narrow places in her bowel that might cause the tummy to back up like this.

Her breathing gets better with each passing day, it is more even and less labored and only really seems to be uncomfortable for her when she is on her back. She has tolerated the daily oxygen weaning well and is on her way to having her nasal cannula out.

Today she made up for last night by sleeping the day away. She was zonked when her physical and occupational therapists came by, but we got her out of bed and sat her up in her little chair anyway. She did some of her therapy with her eyes closed, silly girl!  She woke up about half way through and we got to see her beautiful smile come through her sleepiness as she put stickers on our noses.

Seeing that smile goes straight to my heart and causes a little love explosion every time. I love that girl! I was so proud as she scooted forward on her chair to try to stand up. She winced and frowned, but she did her part and stood up 3 times with a lot of support. It was incredibly taxing on her I know, and it’s tough to see how much strength she has lost, but all of that was overshadowed by her incredible will and desire to work hard. She has a strong motivation and that is beautiful to witness.

Tonight the plan is to help her sleep with some Ativan as needed so that she can get her days and nights turned back around and be fully engaged and awake for her therapies tomorrow. She will also be seen by a speech therapist for a language evaluation and I am hoping they can start addressing that as soon as possible. Right now it’s hard to tell what is an actual speech issue, and what the Methadone and Valium are contributing to. I know speech can be slurred on heavy pain meds and that labored breathing can cause speech interference as well, but I think she might need some help with those muscles.

It was a great day. It felt very productive, like we started down the right path to investigate Phoebe’s ongoing tummy issues, she made progress with her PT and OT and we got connected with a Speech consult tomorrow. The highlights of my day were: Phoebe playing with my hair and saying “aaawww” like she does, Phoebe waking up with a groggy smile and saying “Mommmmyy”, seeing her try to stand up, seeing her play with her nurse, Abby at 4 am and smile and have a good time.

Tonight Nathan’s Mom takes the night shift and for her sake, I hope she gets more sleep than I did last night…but I don’t think any of us will complain ever again about a 3 am Phoebelicious party! We are just thankful to have our girl back! Tomorrow Nathan’s Mom will come spend time with the boys so Nathan and I can be together with Phoebe for the day and we are looking forward to that. It was hard to be away for so long while we were sick.

Thank you all for continuing to pray her through, she is a little fighter and I am so proud of her resilient spirit!

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.

9 responses »

  1. It’s amazing how one day things can seem so simple but the next they are a victorious step in accomplishment. I’m praising God for the praises so far and the greater ones yet to come. My prayers are with Phoebe and her family.

  2. My heart smiles at these seemingly small victories. The joy of the Lord is our strength. Blessings,and joy, and peace be upon you all!

  3. What a little dolly. Thank you so much for taking the time to update all of us far and near. Oh Lord, thank you for holding Phoebe and her whole family. Give the boys all the patience they need when things are so erratic. Thank you for her smiles and progress. AMEN

  4. So Thankful that she is doing so well. She is so beautiful and I just love her pink bow. Way to go Phoebelicious, keep up the good work!

  5. She is such a sweetheart. It is great to hear the positive steps she is making. Praying for healing and restoring of all functions. Praying for a great night of sleep tonight and that her stomach and intestines begin working perfectly.

  6. I have heard about this roller coaster ride that cancer brings you on. I guess this is part of it. Continuing to pray and pray for Phoebe and for God to open up a treatment plan that will work with no side effects or complications.

    Praying and praying,
    <

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