4:56 pm:

Phoebe is asleep, making up for a rough night without much sleep. I got a phone call from Nathan at 2:30 am telling me I might need to come up to the hospital because he was extremely nauseous and was afraid he had a stomach virus and didn’t want to be a threat to Phoebe. He decided to wait it out and call back if it got worse, but I never received the call. It seems he just ate something that disagreed with him.

During the day she gets IV meds that prevent kidney problems and help with other preventative measures against the effects of chemo drugs and at night the IV infusion of chemotherapy drugs takes place. She is often given pain meds in conjunction with the chemo to help her sleep.

The Doxirubicen that she was on last night made her pretty ill and she had some vomiting today. Her sodium was down to 133 this morning and she was craving Tostitos this afternoon. It’s amazing how the body craves what it lacks. She is now at 140 and just got her ddavp shot.

We had a nice day of school and I enjoyed speaking Spanish with yet another lawn care guy that came by to offer his services. We have met a few people in our neighborhood and everyone seems very friendly.

The night before Phoebe started chemo we took a trip the playroom. Phoebe was feeling particularly good that day and she was happily banging on the xylophone when a young Hispanic girl walked in with her son. As I watched her interact with the playroom volunteer staff, it became obvious that she didn’t speak English. I waited until she got her 1 yr old settled with a toy and introduced myself. Marta and I exchanged stories and she told me her son had Leukemia. I explained Phoebe’s cancer and surgery and we connected over our similar circumstances.

After a few minutes she asked where I learned my Spanish and that opened the door for me to share about our ministry in Mexico and that Phoebe has dual citizenship because she was born there. Marta and I laughed that she was from Mexico and her baby was born here and I was from here and Phoebe was a Mexican citizen. I soon found out that all of Marta’s family is in Mexico and that she is living with a host couple while her son has treatment. I immediately empathized with her. I have lived in her culture and know that if she was in Mexico right now, she would be surrounded by extended family as she goes through this heart wrenching time.

I know what it’s like to be in a foreign place in the midst of a medical crisis and not understand the language and to miss and need your family. My heart went out to Marta and her little boy “Angel”, and I am thankful that God gave me the opportunity to be a warm, understanding face in her life at that moment.

Tonight I met with a nurse who gave me an overview of what to look for as Phoebe goes through chemo. We talked about white blood cell counts, hemoglobin, platelets, neutropenia and how to administer ddavp shots. I had to give my first injection to the nurse. Poor lady, I can’t imagine that being part of my job, to allow rookies to give me injections! Anyway, I learned how to draw up medicine out of the vial, prepare the shot site and give the shot. Soon I will be the one giving Phoebe her shots and it will become second nature.

Right now Phoebe’s Mammaw is feeding her chicken and she is content. I am praying that tonight’s chemo infusion is not too rough on her, but I expect that it might be since it is the same medicine she received last night. After tonight Phoebe will get a break from most of these chemo meds for a few days and only be on one.

Thank you all for continuing to pray! When the kids are asleep and the house/hospital room is quiet for the night, I enjoy sitting down to read and be encouraged by all of the guestbook posts. Also, I apologize that I don’t have the time to individually thank you right now, but I do recognize some of the names in the guest book as people who have given towards Phoebe’s care. Some of you, we don’t even know in person, but know that we thank you and we are thankful for you!

9:10 am:

Phoebe had a good day. Her sodium is coming down and is the mid 140″s now where it needs to be. Please pray that it will stay there. She did great with her physical and occupational therapy, walked 2 loops around the Oncology floor and played games that worked on her fine motor skills.

Meanwhile, I was doing laundry at home, getting the boys room organized, hanging up the rest of Phoebe’s clothes in her closet and cleaning up the house. I enjoyed feeling purposeful and doing the little tasks that often can seem burdensome in normal life, now those things feel like a blessing.

Early this evening Nathan and I took to the boys to a favorite restaurant of mine when I was a child called “The Magic Time Machine”. At the “Magic Time Machine” the waitstaff dress as cartoon characters, fairytale characters or famous toys and the booths are anything from Cinderella’s pumpkin to a hollowed out school bus, and the salad bar sits on an old convertible car. The boys loved it when their drink came bubbling and gurgling from the dry ice that was added to it. They had a great time and it was fun to see them enjoy themselves so much. It was nice for the five of us to be out together.

When we got to the hospital, Phoebe was sitting up happily in her bed and said “Mommy! Daddy!” excitedly. That is the best feeling in the world. Her face is swollen from the constant fluids she’s being given, but otherwise she looks very good. Soon after we arrived Phoebe’s dinner came and she ate and ate like a champ, which is always good to see because it lets me gauge how well she’s feeling. We had a sweet time together and said goodbye to Nathan’s parents who have been here helping. Nathan stays with Phoebe tonight so I can school the boys tomorrow and then we’ll trade places.

So far, so good with chemotherapy. I know it gets tougher, but I’m pleased with how Phoebe is responding so far. Maybe she will have a stomach of steel after all!

10:07 am:

“Mama, I’m a miracle, Mamaaaa, I’m a miracle.” That’s how Phoebe woke me up at 3 am as I slept in the chair next to her bed. I didn’t understand her at first and thought she was saying “I’m a mean girl”, I said “no Phoebe, you are not a mean girl, you’re a nice girl.” She replied “No Mama, I’m a MIRACLE!” I gasped and teared up as she repeated it over and over again. I have never heard Phoebe say the word “miracle”…it felt like the Holy Spirit encouraging me through her.

She did GREAT last night! NO vomiting on one of the hard hitting nausea inducing drugs, and she slept very peacefully. She did wake up to visit and eat a few Goldfish crackers or raisins every now and then, but she was pleasant and didn’t seem to have any discomfort. So thankful for an easy first night and I know Phoebe was caught up in a big blanket of prayers last night too which no doubt carried her through. Thank you all for praying.

This morning when I was changing her diaper, I noticed several strands of hair on the bed next to her. I was surprised to read that the Cisplatin drug usually causes hair loss within the first two days, it’s hard to believe it will happen so rapidly.
Phoebe’s sodium levels are still a work in progress, but we are down to 157 from 161. This is good because although we want her at or around 145, we want her to climb down slowly. We are about to attempt a walk through the halls to keep Phoebe’s muscle tone in shape. This can be tough attached to the catheter and IV pole simultaneously, so here’s to hoping for a good little stroll and another good day of chemo.

I will update again as we progress, so far so good!

3:33 pm-162:

Current sodium level is 162. I am trying not to be shaken by every sodium report, but it can be difficult. Please pray for her sodium to come down point by point and get back in to the 140’s. I can see on Phoebe’s face that her body is now feeling the effects of the chemo. Her lips are cracking, her cheeks are flushed and her eyelids droopy. It hurts to see this.
I see the desert ahead, I know it will be harsh, that we will thirst, and we will want to turn back.

But,  “I will refresh the weary and satisfy the faint.” is what He tells me in Jeremiah 31:25

I miss the six of us being together, I feel torn between Phoebe’s needs and the needs of my 3 boys. I haven’t seen Ben play basketball yet, haven’t had a good long talk with Averic about his God-questions, haven’t tickled Deacon into a heap of giggles. I miss them.

Isaiah 40:11  says, “He will tend his flock like a shepherd; he will gather the lambs in his  arms; he will carry them in his bosom, and gently lead those that are  with young.”

I have a million and one concerns, things that trouble my heart and make me feel heavy and He speaks to each and every one of them in His word. I would be anchor-less without Him.

So tonight as we ride the sodium roller coaster and Phoebe refuses to drink and my husband is lonely for time with me but sleeping here with Phoebe, I will just have to bring those things to Jesus..no, drag the weight of them to His throne and lay them down at His feet because they are too heavy.

Tonight Phoebe begins the red medicine called Doxirubicen that will turn her urine and possibly her tears, red. Nathan and His Mom are taking the night shift and his Dad and I will be with boys. Thank you all for continuing to read, to pray, to stand, to walk this road alongside of us.

9:12 pm:

Phoebe was in a great mood this morning when I arrived. I found her singing to her Daddy from her bed as he was lying down on the couch in the room. He was singing back to her and they had a happy banter going back and forth. It was a good way to start the day.

At around 8:30 they walked us over to the Oncology clinic and Phoebe had a lumbar puncture where they removed some of the cerebro-spinal fluid and replaced it with chemotherapy medicines. These medicines will travel through her CS fluid in the spine and up around into her brain killing cancer cells. Phoebe was fortunate to not have any tumors on her spine as some AT/RT patients do.

Phoebe woke up about 30 minutes after her procedure and was a little groggy, but otherwise feeling good. She ate some lunch and drank some milk and had her first big vomit. She seemed fine afterward but a little more fussy than usual.

We had a long discussion with one of Phoebe’s Oncologists today where she detailed for us the treatment plan and the specific side effects of the chemo drugs Phoebe will be getting in the next four days. She also shared with us the probability that we will not be going home any time soon. In other words, as an AT/RT patient who also has Diabetes Insipidus and has to be monitored closely, Phoebe is not really on the “stay in-patient 4 days, go home for 4 days plan”. We will most likely be in-patient for some time with no definitive date for going home during these first several weeks. That was a bummer to hear.

Phoebe’s sodium levels have been great the past several days and they are very pleased with that. BUT, when Phoebe receives chemotherapy she has a high IV fluid intake which greatly effects her sodium levels. So, she has a catheter again and constant blood draws and sodium checks to make sure she stays in balance in spite of the fluid increase. Her ddavp dose will fluctuate back and forth between chemo weeks and non chemo weeks and will need to be monitored all the while. Obviously we can’t do that at home so she will not go home until they are confident that she is stable enough to be on a regulated two-a-day shot dose that does not need monitoring.

I am finding that plans are hard to make, dates are hard to nail down and nothing is set in stone when it comes to hospital/cancer treatment life. Each day has it’s own unknown variables, Phoebe responds well to some things and not so well to others. There is no “usually” in this situation. She already has an extremely rare cancer and has responded in an extremely rare manner to the DI in regards to her wild pendulum swings with sodium. Who knows what other rare situations will arise. But “typically” and “usually” don’t seem to apply so far which is difficult because you never know what to expect.

At 7:30 pm she was given Zofran for anti-nausea and that was followed at 8pm by Cisplatin which is an 8 hour drip. This drug can cause hearing loss given over time and that is something to be on prayer alert about. It is also one of the hard-hitters when it comes to nausea. Phoebe will have audiology tests scheduled into her regimen to detect hearing loss.

There is a drug called Amophostine that has been shown to guard against some hearing loss in clinical studies and we are considering that for her 2nd round. Unfortunately the decision is not an easy one because Amophostine is described as a horrible, “nasty’ drug that causes severe nausea/vomiting and stomach cramping. It might be worth it in the long run, but making the decision to make her feel  even more horrible is so difficult any way you look at it. It feels so weighty to be charged with decisions like this. Please pray for us as we wrestle with these decisions. Also, I just got a report that her sodium jumped from 144 to 161. Please pray as we are back again on the sodium roller coaster now that the chemo has started and new variables have been introduced. Here we go…

4:54 pm:

Phoebe didn’t sleep much last night, her tummy troubles were in high gear and she had 3 doses of Morphine throughout the night to try to help her get some relief. She started on the IV drip of Flagyl this morning and we’ll see how that goes.
Last night was wearisome, today has been fabulous. Phoebe has been talkative, silly, feeling well and had a great time in the playroom. She was on her second walk around the floor this afternoon when Dr. Bowers (her Oncologist) came walking down the hall. It was his first time to see Phoebe up and walking and smiling. It did his heart good and it was reassuring for me to observe his response to her. I know people who sign up for a life of treating cancer in children must truly love children, but it was almost like he passed a secret Mommy approval test today when he lit up to see her doing so well.

We had a discussion about Phoebe’s big day tomorrow and I asked a few more questions. I’ve had a difficult time pinning down how I feel towards Phoebe’s neurosurgeon and her Oncologist. At first I felt suspicious, skeptical, then trusting and full of confidence. Now when I see her neurosurgeon I want to throw my arms around him and thank him for so expertly removing the baseball sized tumor from my daughter’s head. But, I refrain. Poor guy, it would be awkward I know, but have you ever felt SO grateful towards someone? I wish I could just tell him how thankful we are, and we have, but I wish he could really know how blessed we are by his skill and what he has done for Phoebe. I won’t dare ever attempt that conversation though, because I would be a sniveling heap of tears and snot. It would not be pretty. I might even break into the ugly cry. Anyway, I’m thankful for the man.

And today when I saw Phoebe’s Oncologist light up with her, it softened something inside of me. He’s a rather clinical guy, but is warm in his own way. I had the revelation while standing there in the hallway that I am entrusting Phoebe to this man’s care. It made me feel like we are on a team, team ‘Fight For Phoebe’s Life” together. The Oncology team here is already becoming so familiar to us, I know they will feel like family as we are in and out week after week, month after month, as Phoebe gets sick to get well. I see why they find satisfaction in their career.

As I write this, Phoebe has been taken off all of her IV fluids and is fully clothed walking around the room talking and playing with toys. She looks healthy, I can’t see the port under her little dress. She looks like she could walk down the hall and right out of this place, it’s bittersweet. We have had a few visitors today which will decrease greatly now that chemo is beginning. For the first while there will be only immediate family allowed and even then only 2 people allowed in the room at one time. We must be diligent about germs and her risk for infection since she will be immuno-compromised. Chemo also generally entails some severe nausea and vomiting and it is of course not convenient to have visitors when she is in that condition. Once we can gauge how she responds to the chemo, more visitors will be allowed although mostly in the common area on our floor.

I have enjoyed the calm before the storm today with Phoebe. I have had her to myself most of the day and it has been good for my soul. Tomorrow a new chapter begins and we step into the unknown. We step into it holding tightly to His hand, the hand that has held a thousand little hands just like Phoebe’s as they walked this path before us. We trust Him with this girl He gave us.

Please pray for Phoebe tonight and especially tomorrow as she begins chemo.

7:37 pm:

Phoebe is fever free and has not had any Tylenol or Ibuprofen since 8:45 yesterday morning! THIS is an answer to prayer!! I have been at home with my boys all day unpacking and writing lesson plans and when Nathan texted me that she as fever free and sleeping I wept…praise God!

It’s evening time now and I am in Phoebe’s room while Nathan is with the boys in the lounge on our floor. The lights are out, Jason Upton worship is playing and Phoebe is in a still, peaceful sleep. I can not believe my eyes. She has not slept like this in WEEKS. Usually when Phoebe sleeps she is kind of “stuck” between sleep and wakefulness, she moves and talks a lot and gets agitated  easily, but tonight, only peace. Nathan said he even changed her diaper a few minutes ago and she stayed completely asleep.

The GI doctors came today and discussed Phoebe’s ultrasound. They did not seem overly concerned about her raised liver enzyme levels because they were only a tad higher than the norm. They are concerned that she has an imbalance in her intestines with an overgrowth of bad bacteria and want to give her Flagyl to clear that up. I got in the car and sped up here to the hospital when I heard that because Nathan and I have been on Flagyl before when we lived in Mexico and it is very harsh on the body, causing severe stomach cramping and insomnia. They decided that Phoebe will start chemotherapy on Friday and the last thing I want is Phoebe on Flagyl and chemotherapy at the same time. The GI doctor told Nathan it is not harsh and will make her feel better, which has me confused, so I guess I will be doing some research tonight. No Flagyl until research.

It was so difficult for me to stay away from the hospital today, but I knew I needed to be home, getting things in order and just doing life with my boys for a day. Still, I struggled, felt guilty, felt a pang of sadness each time I passed the door to Phoebe’s bedroom, I had time to think about our situation and it was difficult not to just give in to the sadness that overwhelmed me. And yet there was some comfort to be had in the mundane..sweeping, wiping up Deacon’s spiilled milk, going over schoolwork. Deacon wore his Phoebe button all day and when we sat down to eat dinner, Phoebe’s blue eyes stared out at me from Deacon’s shirt. It made it all the more obvious that we were an incomplete bunch of Fairs. Her booster seat keeps her place at our table, and it also highlights her absence. I miss her in our home. I ache for the old normal today…

But she is fever free and sleeping and I will rejoice in these victories for today. They are today’s blessings and I am thankful to be able to report such amazing news tonight. I want to hug all of you who have been cursing that fever and praying for it to leave. Please stay away fever!! This is great news for chemotherapy because it means we can TAKE HER HOME when she’s done with treatment!!

Now the fluid needs to reabsorb. Please pray that it would reabsorb and the pressure and fluids in her brain would regulate back to normal. I would love to see Phoebe in great shape before Friday so she is ready for the battle. We all need strength for the battle before us.We need Wisdom for how to manage our schedule and family, health for the boys and Nathan and I so that we can be 100% for Phoebe.

Thank you all for praying and holding us up when we are weak. May He show Himself strong on our behalf. He is our hope, our comfort, our only peace in this storm. We will not be tossed about as the enemy might expect..no, we will stand grounded in His steadfast love. We will rest in the knowledge that we are fully known and fully loved by He who commands the morning sun and sets the boundaries of the sea, whose voice is like thunder and who spoke the world into existence with a word. He is our strong tower, our Jehovah Jireh..and He is good to us.

6:41 pm-Fever is Gone:

Phoebe is fever free and has not had any Tylenol or Ibuprofen since 8:45 yesterday morning! THIS is an answer to prayer!! I have been at home with my boys all day unpacking and writing lesson plans and when Nathan texted me that she as fever free and sleeping I wept…praise God!

It’s evening time now and I am in Phoebe’s room while Nathan is with the boys in the lounge on our floor. The lights are out, Jason Upton worship is playing and Phoebe is in a still, peaceful sleep. I can not believe my eyes. She has not slept like this in WEEKS. Usually when Phoebe sleeps she is kind of “stuck” between sleep and wakefulness, she moves and talks a lot and gets agitated  easily, but tonight, only peace. Nathan said he even changed her diaper a few minutes ago and she stayed completely asleep.

The GI doctors came today and discussed Phoebe’s ultrasound. They did not seem overly concerned about her raised liver enzyme levels because they were only a tad higher than the norm. They are concerned that she has an imbalance in her intestines with an overgrowth of bad bacteria and want to give her Flagyl to clear that up. I got in the car and sped up here to the hospital when I heard that because Nathan and I have been on Flagyl before when we lived in Mexico and it is very harsh on the body, causing severe stomach cramping and insomnia. They decided that Phoebe will start chemotherapy on Friday and the last thing I want is Phoebe on Flagyl and chemotherapy at the same time. The GI doctor told Nathan it is not harsh and will make her feel better, which has me confused, so I guess I will be doing some research tonight. No Flagyl until research.

It was so difficult for me to stay away from the hospital today, but I knew I needed to be home, getting things in order and just doing life with my boys for a day. Still, I struggled, felt guilty, felt a pang of sadness each time I passed the door to Phoebe’s bedroom, I had time to think about our situation and it was difficult not to just give in to the sadness that overwhelmed me. And yet there was some comfort to be had in the mundane..sweeping, wiping up Deacon’s spiilled milk, going over schoolwork. Deacon wore his Phoebe button all day and when we sat down to eat dinner, Phoebe’s blue eyes stared out at me from Deacon’s shirt. It made it all the more obvious that we were an incomplete bunch of Fairs. Her booster seat keeps her place at our table, and it also highlights her absence. I miss her in our home. I ache for the old normal today…

But she is fever free and sleeping and I will rejoice in these victories for today. They are today’s blessings and I am thankful to be able to report such amazing news tonight. I want to hug all of you who have been cursing that fever and praying for it to leave. Please stay away fever!! This is great news for chemotherapy because it means we can TAKE HER HOME when she’s done with treatment!!

Now the fluid needs to reabsorb. Please pray that it would reabsorb and the pressure and fluids in her brain would regulate back to normal. I would love to see Phoebe in great shape before Friday so she is ready for the battle. We all need strength for the battle before us.We need Wisdom for how to manage our schedule and family, health for the boys and Nathan and I so that we can be 100% for Phoebe.

Thank you all for praying and holding us up when we are weak. May He show Himself strong on our behalf. He is our hope, our comfort, our only peace in this storm. We will not be tossed about as the enemy might expect..no, we will stand grounded in His steadfast love. We will rest in the knowledge that we are fully known and fully loved by He who commands the morning sun and sets the boundaries of the sea, whose voice is like thunder and who spoke the world into existence with a word. He is our strong tower, our Jehovah Jireh..and He is good to us.

12:52 pm: Our day began bright and early with a room change, we are now in Room 222 on the same floor. They do this so they can deep clean the rooms. Right as we got all of our things into the new room, they came to get us to go down for Phoebe’s MRI. She was not scheduled for this today, but 2 days ago I noticed a pocket of fluid on her scalp right beneath her incision area from the brain surgery. The Neurosurgeons originally were not concerned, but last night before bed I felt her head again and the mushy pocket had turned to a firm goose-egg. Phoebe’s neurosurgeon stopped by this morning to check it out and decided that she needed a quick/un-sedated MRI to check her fluid build-up in the brain. So, off we went.

Phoebe did great in her little 3 minute MRI and actually fell asleep, but not before she danced a little jig for the MRI people and clapped her hands to the Dora music they played over the speakers. She lives up to her name meaning: “Bright, illuminated light”. Right after that we were taken over to get prepared for Phoebe’s lumbar puncture and sisternogram. They will test her spinal fluid to rule out infection as the cause of her persistent fever and she will have scans every couple of hours to follow the progress of the dye they injected during the sisternogram.

Mom and I went down to the cafeteria and had some lunch while we waited for Phoebe. I have now tried almost every single food item in this hospital.  They just wheeled her back into the room and now we are headed back downstairs in a few minutes to get the excess fluid drained from her head.

After that we are supposed to have a consultation with the GI team because Phoebe’s liver enzymes are high for no reason that they can discern. I look forward to discussing pro-biotics with them and how we can get her tummy flora back in balance. I know that her GI stuff has been all out of whack since she was on the anti-parasite medicine and I’d like to correct that and see if doesn’t completely heal her tummy issues.*sigh…when it rains, it pours. We have been going since 6:30 this morning and Phoebe is pretty pooped.

9:52 pm-After the Busy Day: Amey still doesn’t have internet so she text me to update everyone tonight. It was a day of tests: The MRI didn’t show any fluid buildup in the brain..only the excess fluid on the incision site which they drained today. They want to see if it builds up again and then make a plan from there. The instant test for bacterial on the spinal fluid was negative (Praise God) but they will do a 3 day grow test to get definitive results. We still have not SEEN the GI doctor but he ordered the Doppler ultrasound on her GI tract tonight. The doctors will look at the results and discuss with us tomorrow why her liver enzymes might be high. Like the game, “where’s Waldo,” we could say that about the GI doctors. We have Neurosurgeons, Oncologists and Endocrinologists coming and going but it has taken almost a week to see a GI doc? The X-ray showed that her bowels were less backed up than a few days ago but still a problem. Her stomach is not as big as it has been so her breathing is a little easier. She still has a fever but she hasn’t been on Antibiotics for a few days indicating to the doctors that the fever is from her hypothalamus not regulating itself.

I went to see Phoebe tonight. When she saw me, she asked for my son, Robert. We played Patty Cake for a few minutes. Her face is rounder from the steroids but she was worn out. She fell asleep quickly, talking in her sleep, but as soon as she was quietly sleeping, she had to wake up because it was time to go downstairs for another test. This is the first time that I have heard her cry. Poor baby is so exhausted.

The Oncologist came by and confirmed that there was no sign of the tumor on the MRI. I asked if she would start chemo tomorrow, as planned. She said that the team would have to meet to discuss it. They want to get it going since this is an aggressive, fast growing disease but the fever is worrisome.

Please pray for Phoebe’s temperature to stay normal. Please pray for her to have no bacteria in her spinal fluid and her digestion and liver enzymes return to normal. Please pray for the fluid in her head to not build up. Please pray for wisdom for the doctors and nurses.

I thank the Lord for all of you and your prayers.

Please pray for ANSWERS today. Why does she still have fever? Does she need a shunt to drain the fluids off her brain? What is causing her elevated liver enzymes? Is there anything we can do to help her tummy flora and thus her tummy pain?
These are the current concerns and issues we need covered in prayer. We are being blessed by some incredibly generous givers who are helping to meet our financial needs during this season. Thank you for being a part of Phoebe’s care. And to all of you who are praying your hearts out, sharing Phoebe’s story in your churches and Bible study groups and with your friends and family, thank you! This is awesome to see. It’s so wonderful to read through the guest-book entries and see the ways that we are connected to you all…

11:21 pm: One of Phoebe’s newest habits is sleep talking. The steroids she is on are stimulants and this will hopefully drop off when she is weaned down but for now I get to hear her sweet musings. Tonight they go like this:

Singing: “Holy, Holy, Holy, merciful and mighty, early in the morning….”
“Deacon, no! No Deacon, stop!”
“Let’s go Mom, let’s go.”
“I want my sippy, I’m a thirsty girl, a thirsty girl.”
“Stubby! Stubbyyyyy!” (This is her Grandparent’s dog)
“Deacon is night night? Deacon is not here.”
“Aaaww kitty kitty, aaaawww”

And so it goes. I either sleep on the couch next to her bed or in the bed with her and she chatters like this all night long. It doesn’t make for a night of great sleep, but it sure is cute! Love this precious girl so much..

9:45 am: This morning Nathan and I are going to a “coffee time” here at the hospital to meet other parents with children fighting cancer. It is supposed to be an informational time as well as a social opportunity to connect with others who are on this same journey. I look forward to hearing from the other parents and making new friendships.

Phoebe was not much in a sleeping mood last night. Apparently she got all rested up yesterday after her surgery, so we did a lot of snacking throughout the night and some visiting and talking in between my failed attempts to get some shut eye. It’s a good thing she’s so sweet, it makes it hard to be grouchy even when she’s making me feed her applesauce at 3 am.

This morning Phoebe is taking a bath in a bathtub for the first time in 21 days! Now that she is not hooked up to a thousand wires and tubes, she has more freedom. She is not enjoying her bath as much as usual since her tummy is still so bloated. She has had some tummy relief in the past days, but it seems to be back again today. Please continue to pray that her body would release all of that air. Poor baby is so distended and uncomfortable.

Not much on the agenda for today, Physical and Occupational therapy and taking a ride around in the wagon. Enjoying these days before chemo starts and hoping that we see some tummy relief soon. Thank you all for checking in. I will update again this evening.