Phoebe made the move out of ICU and back down to the oncology floor today. She’s back to telling the nurses that the beeping machines are annoying, so I know she must be feeling better! It appears that her “blip” was indeed a reaction to the platelets although the she didn’t really present in the typical way that people do when they have a reaction. First she got very lethargic, then she turned white and her lips were as pale as her face so they took her for an emergency CT scan to check and see of there was tumor growth in an area that might cause obstruction. The CT was clear but while she was in the CT her eyes and lips started swelling up. She had some red splotches but no hives which is usually the first indicator that an allergic reaction is taking place. The Epinephrine was administered alongside a stress dose of steroids and immediately the puffiness receeded and she returned to normal.

A stress dose of steroids means an all night party since she can’t sleep, and Phoebe had lots of fans visiting her room during the wee smalls last night. Her favorite ICU nurses stopped in to play and others who know and love her came by. When I got there this morning there were still streamers hanging from the ceiling!

Deacon came with me today and spent all day with his sister. He was in hog heaven. I love seeing them together. He climbed right up in her bed, took his shoes off and they colored, put stickers on each other, played with play-doh, sang songs and talked. It warmed my heart to watch them banter back and forth like little people do. She was so content with him and I’m sure it was nice for her to have someone her size in bed with her. He never got bored, never complained, just enjoyed his sister and being there with me. It was a good day.

Tomorrow we are going to “Gilda’s Club” for the first time. Gilda’s Club is a program that Gilda Radner started to connect families afected by cancer. We will go to an informational meeting while the boys go to a Magic Show they’re having for the kids. We are looking forward to meeting other families walking through cancer with their children and will hopefully become more familiar with the resources available to us during this time. They have get togethers, zoo days, parents night out, family picnics etc. We have been blown away by the incredible people here in our neighborhood, and I expect that God has more wonderful friendships awaiting us as we connect with other cancer families.

Thank you all for standing watch with us these past 24 hours. It was a sudden and scary shift, and we are grateful to be on the other side of it. Phoebe is already on day ten of her chemo cycle, on day 14 her immune system will start revving up again! FOUR more days until we can take a big, deep breath and say “whew!”.

~Amey

Phoebe was receiving platelets to get her count up when she had the reaction and turned white. She was taken for an emergency CT scan to check for tumor regrowth and they reported that they “did not find anything scary” on the scan. While she was being taken up to ICU her eyelids and lips started swelling up demonstrating that she was having a reaction, most likely to the platelets. They discussed intubating her, since her airway was also swelling but Nathan asked them to hold off and they put her on the bi-pap machine instead. She was given Benadryl and a stress dose of her steroids and the swelling started to come down immediately. She sat up and talked and smiled for a bit then went to sleep and is napping now.

They are giving her broad spectrum antibiotics and watching her closely for signs of infection. Everyone is most concerned about the weakness in her diaphragm because it is so ATYPICAL of what they usually see with kids in Phoebe’s situation. But then, Phoebe tends to be atypical. So, for now we are watching and waiting to see if she continues to improve. Her blood pressure is a little higher, and her other numbers look good. We are praying that this is just a reaction to the platelets and that this is just a little blip.

Thank you all for continuing to pray!

~Amey

Urgent prayer is needed for Phoebe, Nathan just called to tell me that she turned white and her oxygen and blood pressure dropped. She is being moved to the ICU and that’s all we know right now. She is neutropenic right now which makes her very vulnerable. I will update again when we know more.

~Amey

She’s doing so well! Her bi-pap machine is really giving her some relief from working so hard to breathe and the difference in her energy level alone is pretty amazing. Her muscle strength is improving with her increased energy and she is more engaged altogether. It’s amazing what breathing correctly can do for a person!

The neurology team assessed her today and said that the weakness in her hands and feet is almost certainly chemotherapy induced neuropathy, but that they are unsure what is causing  her respiratory/diaphragm weakness. They would like to perform an ECG muscle test which is a not-very-fun procedure where needles are placed in her skin and then her muscles are shocked to see how they respond. It is an hour long test and the sad part is that she can’t be sedated while her breathing is compromised so she will be awake for the test. This will not happen any time very soon because she is neutropenic from her chemotherapy right now, but as soon as she recovers her immune system they will investigate further. I have mentioned Guillian Barre Syndrome after having done some research, but we’ll see what the tests show.

She still has not received the Vincristine and I’m not sure that she will get this drug again unless and until they pinpoint the source of her breathing issues. That makes me both nervous and relieved. I have a love/hate relationship with chemotherapy. I’m sure most people affected by cancer do.

She went for a “walk” in a walking device today that held her upright and she loved every minute of it. I know it felt good for her to be able to be up and moving albeit with a lot of help from a support device. Her morale is something to behold, she is so motivated and really wants to be up and moving, it’s precious to see her try so hard. Tonight as I was leaving the hospital she said for the first time “I want to go home.” She saw me leaving with the boys and wanted to come too, and it broke my heart. Now that she’s been home she knows where we’re going. I don’t know if home will happen any time soon since all of this breathing investigation is about to take place, but I am praying that we figure it out and move on quickly. I am ready to have her here again with us.

Please pray that we would be able to find the cause of her respiratory weakness, that her sodium would level out and for her strength.

~Amey

I just figured out that Nathan I spend only 3 nights a week in the same place. Two of those nights are after one of us has pulled an all night hospital shift. To say that cancer is tough on marriage is an understatement. We pass like ships in the night and when we are together we are exhuasted physically and emotionally. Tonight I ask for prayer for Nathan and I. We need grace for this new life and the battle we find ourselves in.

Phoebe seems to be doing well so far with this round of chemo. We are just coming in to the scary part of her chemo cycle where all of her blood counts drop and her neutrophils get squashed so the next few days we will really be watching her closely. She is doing well with her new bi-pap machine at night. This helps expand her lungs beyond her limited ability and gives her a break from having to work so hard to breathe. We have also noticed a small improvement in her muscle strength since she has been on the machine, presumably because she is conserving her energy by not exerting herself so much to breathe. She seems happy and playful and is doing great with all of her therapies. Her sodium levels have been high and she has had some vomiting, but on the whole, she look good. She spent an hour and a half in the playroom today and has been asking to use the “big-girl-potty” and those two things tell me that her energy level is great!

Today, as part of her chemotherapy she was scheduled to receive a drug called Vincristine. Vincristine takes a big toll on muscle strength and since her respiratory status is so weak and her diaphragm muscles so puny right now, we held off. Neurology is going to assess her to see if we can pinpoint the origin of her muscle weakness. It is typical for chemo patients to be weak, not typical to lose their entire ability to walk and breathe well. In other words, the Vincristine does not usually cause this degree of atrophy and her respiratory status in particular is very concerning. Please pray that we would be able to get to the bottom of this. We do not want to deviate from her chemo protocol, but we do not want to give her a drug that will completely knock out her ability to breathe on her own lest we find ourselves back in ICU with Phoebe on a ventilator again.

The boys are doing well. Today it was Averic’s turn to go to the hospital with me and he climbed in bed with Phoebe and played games and watched Veggie-Tales  with her all morning. It was sweet to watch. I think it’s less overwhelming for her to have only one brother there at a time and it also allows them to have some special one-on-one time together. Nathan is with Phoebe tonight and I am with the boys. The weather has been beautiful lately and it makes me want to go on vacation. It has been difficult to have a very small radius of operation…I get nervous thinking about being far away from the hospital and yet I wish we could all just go away somewhere together and have fun. Fun is not the same now because life has an under-current of constant concern that dogs me constantly.  The only time I am free from that is when I sleep, and even then my dreams are often cancer ridden. This is another area I need prayer for.

We trust that we will see His goodness in the land of the living, we see it all the time, we do not doubt Him, we just grow weary in this stretch and need a new way to navigate this treacherous landscape.

Thank you all for coming in to the trenches with us,

~Amey

Phoebe had a good day and that means I had a good day. Going to church on Easter Sunday as an incomplete family was not my favorite, but all of us spending the day in her hospital room afterward was great. She looks so clear in her eyes now that the Methadone and Valium are weaned down so low. Her speech is more clear and she initiates conversation, even tells the nurse “that’s annoying!” when her monitor beeps insistently. We blew bubbles and colored and played with her new bracelets, we walked the halls in her pink stroller all dressed up in her Hello Kitty hair bow and we sat for a time in front of the fire place in the lounge. But my favorite part of the day was when Phoebe and Deacon got into an argument. I LOVED THIS because it means Phoebe is feeling herself! Deacon was coloring with a marker and Phoebe took it from him, “Mine!” she scowled. “No, Phoebe, I’m using that!” said Deacon. “Mine Deacon!” she said again, furrowing her brow..and so it went for a minute or so. And I just watched, and smiled. Her spirits are high and her personality is emerging again, but her physical strength is very diminished.

Physical therapy was tough today. She wants to stand up and she can’t. Each day we hold her under her arms and lift, and wait to see if she will hold some of her own weight with her legs, and each day she has no strength and crumbles back into the chair in tears. We try again and again, and she cries again and again. She braces herself, even scoots forward on the chair she is so ready to stand and play and go places, and it is heartbreaking to watch her feel so sad when her legs don’t work the way she so desperately wants them to. This weakness is a mystery to the doctors. She was intubated for a couple of weeks yes, and that would cause some weakness, but they now suspect that her breathing issues are because of a weak diaphragm and no one can explain that. Steroids also cause muscle weakness, but not usually to this degree, so once again Phoebe is unique.

She has had some vomiting the past day and a half and her white cell count is high so please pray against any type of infection. She has not had fever and she seems to be feeling great which are good signs, but we are entering in to the low count part of her chemo cycle when she will be very vulnerable. At this point in her cycle she is no longer allowed to have visitors outside of the immediate family, the infection risk is too high.

The pulomonologist has Phoebe on a bi-pap machine at night to help gently push air into her lungs and help expand them and she is doing very well with that. She is actually sleeping at night and awake during the day and we are not quite sure what to do with ourselves. Just when we had gotten used to the 3 am party hour, she changes the game. Her lung x-rays look better already and her breathing seems improved, so we are glad to be doing something to improve her respiratory status.

As always, it’s a mixed bag…in many ways she is doing great, in other ways she still struggles. Please keep Phoebe in your hearts and prayers these next few days as things get sticky. We are praying for smooth sailing and an uneventful neutropenic time.

~Amey

The night before Phoebe’s diagnosis, Nathan and I went out to celebrate our eleven year anniversary. We had been looking for weeks on Craigslist for a bunkbed with drawers for the boys and finally located one in Longview, about 40 minutes from Lindale. Our idea of a romantic evening out, was to buy some used furniture and hit up a hole-in-the-wall Mexican restaurant on the way home. Fancy, I know.

When we arrived at the seller’s house to pick up the bunkbeds we were met by a married couple our age who had three boys. She looked like the artsy type, with cropped hair and a black beret and he was a good ol’  boy with a thick East Texas accent. I made small talk with the lady while Nathan and her husband disassembled the bunkbed and before too long we were talking about the “Make-A-Wish” vacation they just returned from as a family. She said they went to Disney World, the opportunity of a lifetime, something they could never afford otherwise, but since her son had a life-threatening disease he qualified for this trip. She said he has seizures..constantly. He sleeps with her at night and has a device in his chest that detects seizures. When he has one, she runs this “wand” over the device and it stops the seizure. I was astounded.

I told her I couldn’t imagine having a child so sick, and that it must be difficult on the family. Then she told me she had cancer. Poor Mama. Her hair is not cropped by choice, rather it is growing back after chemo. Now she takes oral chemo pills. I couldn’t believe her misfortune. How could she take care of her boy who needed so much while she needed so much herself? She seemed so strong, and happy. I commented on her situation and mentioned that the hardest thing we had ever had to deal with healthwise is a blood disorder our Benjamin has that makes him very anemic. She said I should apply for a Make-A-Wish, wish. I said, (and these words have replayed in my mind a thousand times since that night) “Oh, I don’t have a child sick enough for THAT, we have been very fortunate in that regard.”

Exactly twenty four hours later, I was cradling Phoebe’s head in my lap in the emergency room in Dallas having just been told she had a large mass on her brain. I must have been in shock because I didn’t quite grasp the magnitude of the situation until a neurosurgeon came in at 1 am to show us her CT scan. He had obviously been called at home, roused from sleep, to come take a look at the baseball sized tumor in her head and decide if she needed emergency surgery. And then I let myself feel it.

And I thought of her. The cancer Mom to the boy with seizures and how the world can turn upside in a matter of hours. I thought about myself, standing in her yard in the dark telling her how fortunate I was. I wanted to go back, be there again, have the story play out differently. That was the end of whoever I was before. Now I am a cancer Mom.

I think of her often and how different my conversation would be with her now. Maybe one day I will get that opportunity. Tonight my boys will sleep in the bunkbed of the boy who has seizures. And Phoebe qualifies for a wish.

Phoebe had a good day with her Daddy and her Grammy is staying tonight. She received her last chemotherapy infusion today and is tired, but happy. We are all wary of her sleepiness of course, since that was the first indicator last time that something was going awry, but she is still very awake and interactive when she wakes up and that is a good sign.

She is now receiving a special breathing treatment that forces air into her lungs in an effort to expand her lungs more. She has it twice a day and it isn’t her favorite. She is also sleeping tonight with a bi-pap machine in hopes that the extra help with breathing will help her rest enough to be stronger. No one is quite sure why her muscles are so weak, and one of the theories is that she is worn out from the very effort of breathing and trying to adequately oxygenate her body. We’ll see.

The difficult part of the chemo cycle is coming up and we appreciate all of your prayers. I praise God tonight that her sodium levels have been so beautiful in spite of all the extra fluids these past few days with her chemotherapy. Those perfect levels are a good indicator that she will get to come home with us at the beginning of next week if she is otherwise doing well!

I hope you all have a wonderful Good Friday and resurrection weekend,

~Amey

Phoebe begins round 3 of her protocol tomorrow. I dread the oncoming days..watching her skin break down, the vomiting, the lethargy, reading the print-outs showing that her neutrophils are diminishing. Lord Jesus, please let this go well.

She had a wonderful day with her Daddy and her Mammaw. She colored, sat in her stroller, had physical and occupational therapy, blew bubbles. They do not think she has pneumonia, only that the spot on the x-ray is a tiny area of collapse because she is so weak and not expanding her lungs in full. The extra oxygen has been what she needed to bring her heart rate down and stop her body from feverishly working to breathe. She is also receiving a “just-in-case” seven day dose of antibiotics.

The next four days she will receive her chemotherapy infusions and in 7-10 days her blood counts should be down to zero. If she tolerates the chemo well enough and her sodium is level and maintainable at home, we will get to bring her home at the beginning of next week until her next round. This hasn’t happened yet, the stabilizing of the sodium levels soon after chemo, so I will not be in any way surprised if it doesn’t this time.

I don’t have many words tonight, just a fragile feeling and the bracing-myself type of dread that comes the night before a new round of chemo. Please pray for Phoebe. I know you are, and I thank you. I never rightly know where to thank people individually. In my former life I would have sat down and hand-written thank you notes, but time and energy fail me. So, please, to all of you who beseech the Lord on Phoebe’s behalf, who pray for our family, who make beautiful blankets, and send “I Love Neutrophils” t-shirts, to those who send generous donations for Phoebe’s care, and those of you who send cards and letters of encouragement, to those who send books and cancer information and resources, and those who make and send delicious home-made food, those who come to photograph Phoebe and our family, thank you, from the bottom of our hearts, thank you! You uphold us, you lend us your strength and walk the extra mile with us.

Holding on to the hem of His garment tonight,  ~Amey