Monthly Archives: May 2012

Deacon is Home!

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Deacon was wrapped with a foam pad that contains medicine and then wrapped in bandages that he will keep on for several days. He had to endure one more burn tank scrub down but it looks like the worst is over. We will change his outer bandages every other day and keep his face clean and lubed up with Bacotracin ointment. He will go back on the 25th to have the foam pad removed and hopefully will be mostly healed at that point. He also has to do stretches to keep his arm skin from healing too tight as well as neck stretches to keep the skin flexible. He is not expected to have much scarring, but only time will tell.

Here’s our little guy…

He is in high spirits, just a little emotional at times and sad to see me go to the hospital to be with Phoebe which is the worst part about it so far.  Fortunately, Phoebe is doing GREAT and when I saw her today laughing and joking and having a good time at the hospital it set my heart at ease a bit and made me feel okay about letting her Grandmothers stay with her for the weekend so I can be with Deacon a little more.

Benjamin is doing well, he feels fine minus some residual itching and should clear up very soon. I’m not sure why God has allowed all of this into our lives, but I know He is good and those purposes will be revealed in time. My hope is that He gets all the glory, because as horrible as these things seem, the beauty far outweighs the ashes and His grace for each moment has been something to behold.

~ Amey

When It Rains….

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Tonight, as I write this, I am at Parkland hospital watching Deacon sleep. When I look out the window I can see Phoebe’s room across the street at Children’s Medical Center.

Some days are too unreal to be real. This was one of those days. Ben (9) woke me up at 6 am complaining that his “chigger bites” (as we suspected yesterday) were really bothering him and that his head hurt. I took his temp, gave him some Tylenol, applied Chigger-X and went back to sleep. Half way through our school morning I found him on the couch crying and complaining that he was feeling worse. Since Ben has an underlying blood disorder called Auto-immune Hemolytic Anemia, I didn’t waste any time taking him to the ER. He’d had a break out like this when he was four that ended up being a systemic staph infection that had to be treated with antibiotics and I knew that if his hemoglobin level was too low he would need a blood transfusion.

Just after getting checked in to the ER at Children’s (where Phoebe was just a few floors above) I got a phone call from Jocelyn, our friend who is helping us out right now. She had been doing math with Averic and heating up some water for mac n cheese when the microwave beeped. We have had to pre-heat our water in the microwave lately since our stove isn’t working, and when it beeped Deacon said “Jocelyn, the water is ready.” To which Jocelyn replied ” Okay Deacon, don’t touch it, I’ll be there in a second.” But Deacon, wanting to be helpful, scooted his little stool up to the microwave and grabbed the glass bowl of boiling water and pulled it out, spilling it all down his cheek, neck, chest and arms. She called me, then called an ambulance and as I was being taken to an ER room with Ben, Deacon was being taken to the ER at Parkland Hospital, right next door to Children’s where we were. It felt like a bad dream. Too unreal to be real.

We made a switch around of people and family members,  and I met Nathan and my Mom in the ER at Parkland right next door after my neighbor Tessa took me over. This is what I saw when I walked in….

He had Morphine and was being sweet, I held back my tears so I wouldn’t scare him. Later he was taken to the scrub tank and Nathan went with him. They said it would be rough, that the first time is the worst, that they would make him as comfortable as possible. I knew I wouldn’t be able to make it through without crying. I am spent with hurting for my children..

Nathan lovingly spared me details, and when I saw Deacon next an hour later, this is what I saw…

He will go to the scrub tank tomorrow and maybe the next day as they see how his burns are doing. Then we will be given wound care instruction and sent home. He will have clinic visits for a while until he is completely healed.

Meanwhile, Phoebelicious was getting fitted for her new boots…

These  little casts will help her foot drop and stretch out those muscles so she can learn how to walk again! Yay for walking!

And here is the Phoebster doing her Occupational therapy in her super-she-ro outfit. She had a great day. Phoebe being the child I was least worried about today was a new experience!

I wish I had a picture of Benjamin to share, but I left him in such urgency to get to the ER for Deacon, I felt so bad leaving him. He does not appear to have Staph, but does have a bacterial infection on his skin and is being treated with antibiotics. If it doesn’t improve in 48 hours he will go back. His blood labs were drawn and his hemoglobin looks great, so I am thankful for that. I told Nathan we need to put Averic in a padded room just in case….I can’t believe 3 out of 4 of our children were in the hospital today. What a day.

Thank you to all of you who have been praying for us. Apparently we need it A LOT.

~Amey

Farmish Thoughts and Round 5 Tomorrow

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So much to catch up on, where to start?

Round five of Phoebe’s protocol begins tomorrow. This marks the LAST ROUND in the induction phase ie: the really yucky part! After this round Phoebe goes on “maintenance” and although I don’t understand exactly what that means, I know that it means that this is where things are supposed to get better. I’m hoping it means more uneventful stays at home and a more predictable life with a girl who feels good! This past week with Phoebe home and feeling good has been wonderful.

Today we wanted to do something special that Phoebe would enjoy since she goes in-patient tomorrow, so we decided to take a trip to the farm in Waco @ http://worldhungerrelief.org  where we lived last year during our agriculture training. We moved out of our farm apartment December 17 and fifteen days later Phoebe was diagnosed with her brain tumor.

The World Hunger Relief farm is the backdrop to all my memories of a healthy Phoebe, so I wasn’t sure how I would feel about being back. In my mind’s eye I see her scooting around on her pink tricycle there, blonde curls aglow in the sunshine. I see her on Nathan’s shoulders as he stands by the fence throwing dinner left-overs to the pigs. I see Averic pulling her around in her red wagon while she squeals with delight. I imagine her bare little feet on the gravel road. The farm is the last place life was normal. And today it was perfect, being there. We were welcomed back into the fold with open arms and Phoebe relished being loved on by people who are so familiar to her. I could see her spirit swell and all I felt was joy for the moment, not loss for days gone by.

In true farmie form, our farm family prepared an impromptu meal of grass-fed burgers and farm fresh salad and we had sweet fellowship together. The boys found their little friends and took off running; they checked up on the old fort, visited the goats and made themselves at home all over again. It was spectacular to see them in their element, to see them having so much fun. Today was a gift, and Phoebe felt great. It was the perfect exclamation point on a wonderful two weeks at home!

Nathan and I also really enjoyed our weekend away at the home school conference. The workshops this year were particularly relevant to areas where we needed some light in our lives and we came away renewed and with new resolve in several areas. Benjamin met us at the conference for the chess tournament on Saturday and was pleased to win 6th place for his age group. I got to see both of my mother’s on Mother’s Day and enjoyed a lovely lunch out and beautiful flowers from my father-in-law. I could not have asked for a better weekend.

So, here we go with Round 5 tomorrow. Phoebe will have an Echocardiogram then she will receive her intrathecal (spinal) chemotherapy injection and be admitted to the Oncology floor. Tomorrow evening her IV chemo will start and continue over the next four days. This round she will be staying through the weekend so we can get her feeds through her ng tube on a schedule rather than her being on continuous feeds. This will allow her to be detatched from her pump at intervals throughout the day and also give her more of an opportunity to eat table food.

Praying for a smooth round and feeling grateful to God who sustains my girl…..

~Amey

Praise

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Phoebe’s MRI today was squeaky clean and there is much rejoicing in the Fair fold tonight! Nathan and my Mom were at the hospital this morning with her for the clinic visit, port access and MRI prep and Phoebe was in a belly-laugh sort of mood, having fun and spreading her little love beams all around. The name Phoebe means ‘brightness’ and her middle name Lucille means ‘illuminated light’, and a bright, illuminated light she is.

She had a lumbar puncture as well to test her CS fluid for cancer cells and we will get those results later.

Tomorrow Nathan and I are headed to Arlington for the annual home school conference and book fair we attend each year. Jocelyn and Nathan’s parents will be here with Phoebe and we will spend our first night away at a hotel since the first week of her diagnosis. Jocelyn is trained in how to give Phoebe all of her meds and shots and that is such a blessing to us because it means we can steal away for a night and feel confident that she is in good hands.

We look forward to this time each year to get away together, attend great workshops about parenting, scheduling, methods for sowing God’s word into the hearts of our children and lots of other rich topics. We spend the day checking out the different publishers, looking over educational and discipleship materials and going to the workshops, but my favorite part is always eating lunch together alone and talking about our goals for our family for the upcoming year. Most of all, it will be nice just to be together, bask in the relief of a clean MRI and enjoy doing something “normal”.

We are so blessed tonight! Thank you for praying for our Phoebelicious….

And thank you to the secret donor who got the hotel room for us, whoever you are!

Phoebe Update

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Sometimes I log on to here in the evening and I’m wordless. It’s times like these when you might not hear from me for a day or two or even three. My silence often means there is no new news, or we’re worn out from having fun, but other times it means I’m simply numb, worn out, emotionally blank. This is the part of the marathon where my “muscles” are growing tired and the finish line seems a million miles away and throwing in the towel sounds really good. But this isn’t an optional race, there is no choice but to keep putting one foot in front of the other.

Right now, one foot in front of the other means navigating Phoebe’s mood swings from the steroids, fetching applesauce or macaroni and cheese at 3 am because of her hunger from the hydrocortisone, taking unexpected trips to the hospital because her ng tube got pulled out or spending several hours in the ER just to be sure her excessive sleepiness isn’t a bout of wacky electrolytes. It’s exhausting. Having Phoebe home is a thousand times better than having her at the hospital, but it is demanding. And it is at the end of these days that I come to write and find that I have nothing left.

All that aside, Phoebe is doing great. We have been out several places with her since her counts have been coming back. She was a big hit at the grocery store and several people stopped to talk with her which she loved. Tonight we went out to eat and she pulled out her ng tube just as we arrived at the restaurant so she got to be “untethered” for a while which is always nice. As we drove home, I looked back at her reflection in the rearview mirror without a tube on her face, completely free from any type of medical device and was overcome with gratitude. Just 2 months ago she was completely swollen, blistered and intubated in the ICU with several different IV lines in her body fighting septic shock and tonight she was riding down the road in her carseat with nary a tube. God has taken such good care of her.

I see her making improvements in her strength every few days. It is slow going, but today when we put her on her tummy she held herself up on her arms for longer than she ever has, and she held herself in a crawl position without freaking out like she tends to. She is also starting to scoot herself across the bed when she wants something that is out of reach which is new.

Phoebe has not lost any ability, walking or otherwise, that she can not completely recover. Sometimes people ask if she will ever walk again and I forget that I might not have communicated that. Yes, Phoebe will be able to walk again with agressive physical therapy and we are setting up in-home therapy for her during the times she is home. I am also told that she will see an ‘Orthotist’ (sp?) who will take a mold of her legs to create cast-like braces for her to wear in order to correct her foot-drop and get her muscles stretched out correctly. She has a lot of work ahead of her, but her spirit is so strong and her motivation so inspiring!

Thursday is MRI day, and we appreciate your prayers! Here’s Phoebe and her Daddy tonight at bedtime…..

Back Again So Soon?

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Look who got to come home again today!  Here she is watching her brothers jump on the trampoline….

Her fever abated again and she got another good dose of IV antibiotics so she was released from the hospital today and is doing great. We will go back on Tuesday for labs and be admitted for the night to prep for her scheduled MRI on Wednesday. Yep, it’s MRI time to check for tumor re-growth. She will be intubated and sedated for 3 hours while they scan her brain and spine. It’s always nerve-wracking waiting on those results, they even have a name for it in cancer circles; “scanxiety”. Please pray for a clean MRI and also that Phoebe will do well under anesthesia. Hoping our weekend is uneventful and grateful to have our girl home!

Carousel

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Nathan took Phoebe back to the hospital today to be admitted. Another fever this morning signaled it was time to go.

Today found me at Six Flags of all places, with my boys and Jocelyn and a thousand flashbacks of my growing up years. As a kid I divided my time between Wet-N-Wild and  Six Flags in the summer time. A Season Pass was $40 and Mom would drop me off with a friend for the day. That’s why I know every turn on the Mine Train and the scary part that makes everyone scream right before they drop into the tunnel. I know the dank smell of the “Cave” that use to house “speelunkers” but now hosts a “Yosemite Sam” theme, and the Conquistador and the Shockwave and so on. I was surprised so much of the park remains unchanged.

And everything in my life has changed.

My ten year old feet climbed those stairs and walked those pathways and waited in long lines in the sweltering Texas heat. And I keep having these kind of full-circle moments lately. I’m aware that I’m acutely tuned in to the cycle of life now in a way I have never experienced before. It’s almost like I’ve developed a sixth sense.

When we moved to Dallas one of the first things on my to-do list was to get a library card for the boys. The Preston-Royal library near our house looks almost out of place flanked by sprawling houses and carefully manicured lawns. The building is a leftover from the 50’s with big white arches in front and spackled concrete decor on the exterior walls. I remember thinking how it didn’t blend in to the landscape the first time we went and I was glad for it. I prefer an older building with character to a newer one any day.

The other day Mom asked which library we went to. When I told her Preston-Royal, she sighed and told me that she spent many an hour in highschool there writing research papers and book reports. I was fascinated…to think that her grandchildren now curl up with books in the corners of that building which appears largely unchanged since the time she frequented it. They inhabit the same space 40 years later. The next time we went, I could almost see her there at a table, her head bent down over a paper. She looked like she does in that graduation picture in her cap and gown by my grandparents swimming pool. She would have been just 2 years shy of marrying my father, four years from my beginning.

Life is weird like that….beginnings and middles and endings.

Before we left the park today we rode the carousel. It’s a big, beautiful ride, the first thing you see when you enter the front gate. I have ridden it several times across the years, less so as a teen I’m sure, when it just wasn’t cool anymore. But today, I hoisted Deacon up on to a horse on a pole and climbed on the pony next to him. The music started and the circular motion took us around. I delighted in his delight. As I studied the ornate woodwork and painting the carousel showcased, I could see myself, at 8, at 10, 13, riding there, moving through space toward the woman that I am now. That girl knew nothing of this woman, of responsibility, of life’s beginnings and endings…and of these sons. And the carousel became a metaphor for the cycle of life that I understand now for the first time. Once, I entered this carousel a child, today I stepped off, a woman.

All this being aware of death magnifies life. It puts it under a microscope for observation and teaches you to savor, to realize the fluidity of each moment. We move so quickly, almost imperceptibly in and out of seasons and they must be recorded in our hearts…