Monthly Archives: February 2012

Chemotherapy Bumped (Feb. 15th, 2012)

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10:33 am:

Phoebe’s sodium is at 138 which is PERFECT and it has been in the mid-to-high 130’s the last few tests which means she is stabilizing! She has had two good nights of sleep and has been up in her bed playing and coloring. She even made a trip to the play room yesterday!

Taking a nap

She had an x-ray last night to check her feeding tube placement and see if they detect anything new in regards to her tummy. We’re still waiting for the report on that. Thank you all for praying her through. Still hoping to see her tummy get nice and soft again and the fevers to stop.

2:40 pm:

I spoke too soon..sodium is back in the 150’s. I think I’ll quit posting the sodium levels because they change so frequently. Please just continue to pray for that very frustrating issue. She looks good today and is having fun with her Mammaw and Aunt Jenni! I’m hoping to post some pictures later when we have time.

9:35 pm:

Round 2 of Phoebe’s chemotherapy has been bumped up to tomorrow because there is a shortage of the intrathecal (spinal) drug called Methatrexate that they use and they want to make sure Phoebe gets her dose. A drug shortage is something that has never effected me personally, but this particular one really makes me nervous. The shortage was on the news the other night and we have read several articles, so we knew it was happening but did not realize how quickly we would be effected by it. Please pray for that!

Phoebe has had a great couple of days enjoying her higher blood counts and her immune system being a bit more intact. She has been sitting up almost the entire day, coloring, blowing bubbles, playing with Legos and just enjoying herself. I am trying to focus on the fact that Round 2 means we’re closer to the end of this first very intense 12 weeks of chemo. Usually around day 8-10 after the round starts is when her cbc numbers will drop and we will go through what we just went through again.

That is the roller coaster.

Tomorrow morning while I am waiting for her to come out of her lumbar puncture, I will give thanks that we are able to have the medicine she needs, that we are able to receive such great care and that we are one step closer to the end of chemotherapy. I am so grateful for these doctors and nurses that have invested their lives into caring for these children with cancer…what an incredible way to serve others, what a weighty gift to walk out.

Our mailman has been run ragged over the past two days with all the mail and care packages we have received. I don’t have time to thank you all individually right now, but THANK YOU! We have received blankets, and toys for all of our kids, baked goodies, prayer shawls, handmade cards and Valentines, jammies for Phoebe and myself..the list is endless. We love you, our mailman might feel otherwise. 🙂

Thank you all for being on Phoebe’s team! We are so thankful for each and every one of you both for your prayers, and the many ways you have reached out to us and blessed us.

Trusting God With Phoebe (Feb. 14th, 2012)

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12:17 pm:

From the beginning Phoebe inspired faith in me.

My third pregnancy with Deacon culminated in an unplanned and unnecessary c-section which left me with some post traumatic stress issues. That is a story for another day, but when I found out I was pregnant with Phoebe, I was determined not to have to go through that again.

I still remember the night I told Nathan the news. We were living in Chapala, Mexico about 45 minutes outside of Guadalajara. The boys were all tucked in to bed and we had decided to play a game of Scrabble. Nathan was getting our drinks and snacks while I was setting up the game. I spelled out “WE’RE PREGNANT” with the little white Scrabble squares on the board and waited for him to notice. He sat down, organized his letters for the game, and went to play his first word. He read my message on the board and looked at me with disbelief, and then a huge smile broke out on his face. Deacon was only 10 months old. We were thrilled.

So began my journey to find a natural minded health provider in Mexico that would allow me to have a VBAC (natural) birth with Phoebe even though I had a previous c-section. Joni and Jose Luis, a doula/Dr. team in Guadalajara were the answer to my prayers. Phoebe and I had a fabulous “no big deal, birth is normal” kind of prenatal experience, without being poked and prodded and examined week after week. As we approached her due date my Mom flew in from Texas to wait for Phoebe. Of course we had no idea she was “Phoebe”, we didn’t find out who was in there, whether boy or girl, until she was born, and really we wouldn’t have been the least surprised if she was a boy because we kind of have a track record.

Mom waited there with us for THREE weeks. Phoebe made us wait. She was going to come in her own good time when she was ready. Had I been in the states, I would have been made to have a repeat c-section if I was three weeks “overdue”. Phoebe was monitored by ultrasound every other day or so to make sure she was still looking good, and we were told that we could just wait on baby. So we did. We took walks on the malecon (the waterfront boardwalk by Lake Chapala), we hiked up the mountain trail by our house and Mom took us out to eat a lot. It was a precious time.

On August 16th 2009 Phoebe made her debut after 26 hours of labor. At one point in my labor she was stuck. It was an excruciating half hour or so of back labor. I was made to get out of the water tub I was in, and stand up. I could hear Nathan praying with all of his heart and asking the Lord to release her. My husband does not cry and he was crying. Suddenly she was released and I hobbled back to the water where our beautiful baby girl was born into the arms of her Daddy.
We were awestruck, in love, totally bowled over with joy for the incredible, intimate, non-medical, loving experience we had just shared that ended with the most beautiful prize, Phoebe Lucille Fair. She was three weeks past her “due-date” and amazingly was a very normal 7.12 oz. at birth. She was right on time.

In the past weeks I have replayed Phoebe’s entrance into our lives over and over again and it has brougth me comfort. Nathan was built up by the part he got to play in Phoebe’s birth, it was as if he called her forth and she came. I remember there were several moments during labor where I thought, “I just want to cry and let go of this intensity”, but I knew that if I surrendered to the pain that I would lose the ground I had worked so hard for. I knew the prize was at the end of that pain and if I could just set my face like a flint toward that goal, we would get there.

That is precisely how I feel in the battle for Phoebe’s life. If we will not surrender to the pain, but remember that the prize is at the end of all of it, if we will set our faces like a flint toward the end of chemothrapy, we will get to go home with our baby girl in our arms just like we did on that beautiful day in 2009. God let it be so…

Heavy Heart (Feb. 13th, 2012)

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8:45 pm:

My heart is heavy tonight as three AT/RT families we know of are taking their child home for hospice care or have lost their children in the past few days. What do I do with that kind of news? I just don’t know…

Tonight after dinner, the boys asked me to tell them a story. Of course these stories have to include light sabers, a villain of some sort and 3 boys on a mission. So, tonight I told a story about a monster that needed hunting down and three light-saber wielding boys who flew on a super-sonic skateboard until their swords detected evil with a loud ringing sound. The loud ringing sound started once they neared the hospital where Phoebe is and the boys tracked down the monster on the Oncology floor. The monster was named Cancer and the boys burst into each room defeating the monster with their light sabers and the Holy Spirit descended upon the child and healed him/her instantly, their hair grew back and they got up and put shoes on ready to leave the hospital. When I got to the part about Deacon defeating the monster in Phoebe’s room, Ben laid his head on the table and started weeping. My precious 9 year old boy is so broken hearted over Phoebe’s situation. I just held him and cried with him. I talked about it being good to cry with all of the boys and how important it is to say how we feel, how much we miss her, that it hurts to go through this etc. I’m glad it happened, but oh how my heart grieved for my boy.

Ben asks about her daily, wants to visit her often, but has been sick. I think I will take him first for our Mom and son day with Phoebe. Averic asks a lot of questions. Deacon says he misses her but doesn’t really quite understand.

After dinner we Skyped with Nathan and Phoebe at the hospital and I could tell Ben just wanted to reach out and grab her. He kept remarking about how cute she was. This was his first time to see her without hair. The other 2 boys tired of Skype and went off to play Legos, but Ben stayed glued to the screen talking to her, watching her color, giggling about her Phoebe-ness and her sweet little chuckle.

Phoebe has had a pretty good day herself, I think it’s just been a rough day emotionally for the rest of us. This routine is wearisome and not being able to bring Phoebe home has been a let down. We just miss her in our family, in our home, at our table, running around with the boys.

It’s hard to believe round 2 of in-patient chemo starts Friday. It seems so crazy to load her up with chemicals right now when she is still trying to fight her way back from the last round. Please pray for her little body to rally and be in a better place by Friday.

We have been receiving the sweetest care packages full of Valentine’s Day goodies for Phoebe, little knitted hats and headbands with bows and blankets and all kinds of fun things, so thank you if you’ve been a part of that. Phoebe is one very loved little girl and we have such fun giving her all of these things.

Our prayer requests tonight are the same: sodium level, tummy pain and bloating, open sores and fever. Thank you all for staying with us through this storm.

Ups and Downs (Feb. 12th, 2012)

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5:51 pm:

It’s been an up and down kind of day. Phoebe’s sores are having a hard time healing and they look deeper today than they have in recent days. Her sodium is still wonky and needs to come down and her tummy is still bloated. The boys are still sick. Those are the “downs”.

The “ups” are: Phoebe got her port “de-accessed” today and had a REAL bath in the bathtub! She was afraid at first, but quickly remembered how to play with her bath toys and enjoyed making me “soup” with her cup and bowl. She didn’t want to get out when it was time. We tried to take a walk around the unit but she was too tired so I carried her and walked around. It was SO nice to have my baby girl in my arms walking without tagging a pole alongside of us.

She will get her new port needle in a few minutes and be hooked up again, but it has been a nice couple of hours of freedom. Over all, Phoebe has had a fun day. She slept for a couple of hours on her Grandad’s chest and then played with her toys for a while. My Grandparents came by today and they were thrilled to see Phoebe so up and alert. I’m afraid my posts have made it seem that she is in constant pain, which she is not. In spite of her sores and tummy pain she has a good morphine drip that keeps her pain under control for the most part. She does get restless and frustrated at times, and that can be a side effect of the steroids she is on.

She had an episode today where she “zoned” for half a minute and was not responsive. This is common when her sodium levels get high and can be very scary. Keep praying for that sodium..

I will leave the hospital tonight and have dinner with Nathan before heading home to my boys. I am praying for total IMMUNITY to whatever they have.

My Mom and Nathan’s Mom will take the Phoebe shift tonight and she will be in good hands with her Mammaw and her Grammy. Thank you all for your continued prayers.

Phoebe Needs Prayer Today (Feb. 11th, 2012)

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1:28 pm:

Phoebe had a rough night and my Mother-in-law called at 6:30 this morning to tell me I should come in, Phoebe was asking for Mama. I quickly showered and packed for the night, grabbed Phoebe’s clean blankets and headed out the door. My 3 stooges were bleary eyed, ambling down the hallway in the dusky morning light, and I got to kiss their noggins before I left. Averic has been down with fever and vomiting the past two days, so I hate leaving him especially right now.

Phoebe falls asleep playing with her toy

My Dad came to get Ben this morning for their weekly trip to Lindale so Benjamin can play in his Upward basketball games. I hear they won and Pappaw rewarded Benjamin with a Texas-sized chicken-fried steak. Deacon is on the mend with just a residual cough, but needs prayers because his little four year old heart is having a hard time each time I leave to go to the hospital. He begs to go with me and it breaks my heart. When he is well, I plan on bringing him up to spend a day with Phoebe and I at the hospital. I’d like to do that with each of the boys if everyone will just get healthy. I usually have a date with each boy by himself at some point in the month, and I think we are all missing that right now.

Phoebe was in a better place when I got to the hospital, but has had a difficult time throughout the day. Her morphine dose has gone up again so she can be comfortable. It seems that the progress we were hoping to see this weekend with her blood counts going up is not happening. Please help Phoebe fight today by praying for the following:

1. Fever today is 102.1

2. Sodium still high @ 159..the pattern today has gone 166, 153, 159     (1 step forward, 2 steps back)

3. Not yet tolerating a full NG tube feeding and she needs the calories     to heal.

4. Tummy very distended and uncomfortable. Her “innie” bellybutton is     an “outie” right now. They still have no explanation for this.

5. Left lung is still partially collapsed and breathing shallow.

6. Open sores on bottom need to heal.

7. She will receive more IV chemotherapy today on top of all of this.

Nathan’s Mom got to sleep for a few hours today and I think the 2 of us will stay tonight. It seems like Phoebes needs are a 2 person job right now because she is often uncomfortable or irritated or not sure of what she wants. It also helps me to have someone here to make decisions with about IV fluids and what we should try next or what questions to ask the doctors. Often times, just making the every day minute by minute decisions is the most difficult thing because it’s overwhelming.

Many of you have sent songs, or words and impressions you’ve had from the Lord and those speak straight to my heart. Thank you for praying and sharing. Nathan and I go over those together and we feel so blessed to have such “involved” friends, family and even people we have never met.

I hope to post again tonight, hopefully with a good report!

Gratitude (Feb. 10th, 2012)

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7:56 pm:

Phoebe had a good night with her Grammy last night. She has had a hard time getting comfortable in her bed with her sores and her tummy bloating so they increased her morphine drip last night and she slept peacefully. The morphine makes her face really itch so she receives Benadryl to help with that as well. She is being seen by the wound care people in the hospital and has a regimen we follow to keep her bottom protected until those sores heal up.

Phoebe Loves to Brush Her Teeth

Sodium is still all over the place with a high of 166 today. I have a hard time not getting all bent out of shape when I get the sodium reports. Nathan reminded me today that there’s nothing I can do about her sodium and that she has a whole endocrine team consulting about her situation around the clock. I do know this, but it’s hard for me not to react to the news each time that number climbs. Her high sodium keeps her tummy bloated and tight and makes her feel miserable. If high enough it could cause a stroke. I constantly have to give these things to God because I have several months of this ahead and can not live in this constant state of hyper-concern. Peace Lord..

The endocrine team is always commenting how tough a case Phoebe is to regulate because she is so sensitive to any change in her intake, ie: if she drinks an apple-juice box it can totally change their game. Most DI patients are not so prone to sodium swings with such a small intake, so Phoebe really throws a wrench in their DDAVP scheduling and dosage. So, they are constantly tweaking and changing things, IV fluids and the timing of her shots and the specific dosage. Grrrrr.

In spite of all this, Phoebe is managing to feel well enough to sit up quite a bit and play with her stacking blocks and put stickers in her sticker book. She also enjoys coloring or throwing her blocks into the bucket, catching bubbles and being read to. I got to see her do all of the above this afternoon and that was nice. She was having a good time and smiling even though her eyes were a little silly from all the morphine. She asked for some clothes and I put her jammies on her which she appreciated.

Her appetite is growing and she had some chicken and green beans and peas today, but we could not get her to drink. She NEEDS to drink and I’m not sure why she stopped since last night, but please pray for her to feel thirsty, she needs to help lower her sodium levels by drinking fluids. She is also receiving nutrition through her ng tube and seems to be tolerating that well so far. We are also avoiding salty foods for her.

We have received so many lovely toys, cards, baked goodies etc. and I recognize many of your names from Caring Bridge even though I don’t know you in real life, and we just want to say thank you for your thoughtfulness. I can not believe the stories I hear about the people who are praying for our little Phoebelicious from all over the world!

And thank you to those of you who have given financially towards Phoebe’s care and are helping us to be able to live here in Dallas near the hospital while she receives chemo. This is a huge blessing for us, and especially our boys so we don’t have to split up our family and commute. Phoebe has been in the hospital for forty days, since Jan 1st. It’s hard to believe she hasn’t been outside in forty days.

Tonight Nathan and I are BOTH home with the boys while Nathan’s parents are with Phoebe. We are enjoying an almost normal night with homemade cookies and America’s Funniest Home Videos. It feels good to laugh with the boys and unwind. Tomorrow I will be back at the hospital with the Phoebster and she will have her outpatient chemo IV drip in the evening.

Thank you all for traveling with us down this grace-filled, sometimes raw and too-real, road. Thank you for leaving your encouragement in Phoebe’s guest book. We read it daily, often cry, sometimes laugh or marvel at who is following Phoebe’s journey…

all our gratitude,  ~Amey

More Hair Falling Out (Feb. 9th, 2012)

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Most of Phoebe's hair came out while I brushed it.

11:10 am:

Yesterday evening while Phoebe was asleep, I got the comb and started brushing her hair. The room was peaceful and the lights dim, the star machine that projects the galaxy on the ceiling splayed a thousand green stars across the darkened room. It came out easily, her hair, in soft clumps that pulled away as I gently combed. She didn’t even wake up. I turned her head and continued on until a huge nest of hair sat beside me on the sheets. All that was left was a thin layer of soft strands. Nathan came up to the hospital to take pictures and I cut the rest short so that it would not get tangled in her face tape and ng tube as it has been for most of the day. I think the rest will fall out today or tomorrow.

She looks like a chemo patient now and that was difficult. But I didn’t cry. She was sitting up playing with toys and enjoying Daddy blowing bubbles while I cut her hair and I didn’t want her to see me sad.

She had a rough beginning to her night last night, with almost 3 hours of pretty intense pain from her open sores on her bottom. Dr. Bowers said those should heal right up as soon as her immune system kicks back in. I pray so, poor baby is more bothered by her bottom than anything else right now. It took a while for the morphine to trump the pain, but they finally got it under control and she is now on a constant Morphine  drip. We still have the pump as well so when she seems to be really struggling with pain we can push the button to give her an extra dose.

Deacon is still sick and it looks like the other boys are coming down with it as well which means they can’t come to the hospital. This week when Nathan and I trade posts at the hospital, I have to call him when I pull up to the front of the hospital, he has a nurse stay in the room with Phoebe and he meets me at the van to take the boys and I go up to her room. They won’t let you past the front desk with a cough or runny nose which is great, but it has taken some creative logistics on our part.

Nathan’s parents come today for four days and that will be a big help. We have had a lot of help and feel really taken care of. The only thing that no one can help with is the intensity of life at the hospital right now. As soon as I walk into her hospital room after sleeping the night at home, I feel the stress descend upon me like a cloak. I am fixed upon screens with all her numbers; heart rate, oxygen levels. I am consumed with sodium levels and always waiting for the next report, thinking maybe I can prevent disaster.

We are really hanging our hats on seeing an improvement in her overall well being this weekend. She needs a break from hurting. Please pray for the neutrophil levels to leap back up and for her sores to heal. We are encouraged that today she continues to snack and drink by mouth, that is a good sign!