I am happily exhausted from a fabulous day with Phoebe at HOME! It was a close call when I had to take her in to the ER at 4:30 am for a fever, but we made it out around 11:30 after her blood levels came back good, sodium was good, fever went down and she got an antibiotic just to be safe. We left the ER and passed a window overlooking a flower garden and she gasped “flowers!” like it was the first time she had ever seen one. She is seeing the world anew and it is beautiful.

The joy of having all of our children under the same roof  is immense. It warms me every time I walk into a room and see all four of those little people together. The boys huddled around her all day, just soaking her up, we all did. We had a few little blips with the feeding tube and she did vomit once, which sent us into a panic over her cortisol levels and whether or not we needed to give her an extra dose. We are still unsure about the feeding tube placement, oh me.

We are juggling SEVENTEEN medications as well as her ddavp shots and breathing and respiratory treatments. To say that it’s a full time job is understatement. WOW. Even now, as I write this at 11:30 pm, our alarms are set for 1 am, 2 am, 5 am and 6 am to give meds, change out the formula feeds and check urine output. And it is all so very worth it! To watch Phoebe sit on the living room floor with her toys and blankets and brothers all around is priceless. This day has been a gift! Her spirits are so high, smiles are abundant and silliness abounds!

God’s grace is amazing in what we are able to do right now on zero sleep and with an intense and nerve-wracking med-schedule. Phoebe is GREAT motivation for all this craziness, and having her here is more wonderful than I can put into words. Thank you all for praying her home!

~Amey

Deacon plays with Phoebe

She didn’t need the tooth extracted! She is however the owner of a shiny new silver cap and two little fillings. The Methotrexate lumbar puncture went well and she is being watched closely for any ill effects although none are expected. She also had a hearing test while she was sedated and she has no sign of hearing loss so far! Aside from the Methotrexate injection which makes me nervous, it was a day of good reports. It is much easier to recover from the light dental work she received than an extraction and now I don’t have to worry about that healing up before her next round of chemo knocks out her immune system.

She is on track to come home tomorrow if she continues to do well tonight. Her sodium levels have been stable, even with the change in her fluid status for her sedation. Her breathing went very well while she was sedated and she came off the vent right when the procedure was finished. Things went BETTER than expected which is a nice change.

I spent this evening cleaning the house from top to bottom and sanitizing everything in sight. It was a bad day for germs in the Fair household. Phoebe’s room is ready for her and the welcome banner the boys made is hanging from the mantle. I wonder what she’ll think coming to this house where we now live that she has never seen? I put all her familiar stuffed animals and toys out where she will see them first thing when she comes into her room. I want her to know this is where she belongs and to feel at home.

Then there’s the part of me that is absolutely terrified of not having her every move detailed on a monitor I can look at. I have gotten used to knowing how many times her heart beats every minute and how much oxygen her body is absorbing. And what will I do without the sodium tests? Oh me. That is my prayer request tonight; that I would not be overcome with worry the whole time she is here or be unable to really enjoy this time because I am waiting for certain disaster. I know it won’t be simple, but I would like it to be as stress-free as possible.

We are looking forward to seeing Phoebe outside, seeing Phoebe with her dog Sadie, seeing Phoebe in her new room…I am holding my breath and praying she remains stable enough for discharge.

Thank you all for your love and support and for taking the journey with us,

~Amey

We are still tentatively looking at going home this weekend, but we must first meet the requirements ie: stable sodium levels and Phoebe handling her tooth removal without any “blips” tomorrow. Her sodiums today dipped into the lower range after having been stable for the past few days, so that needs to come back up.

Also, it was decided this evening that she will receive her spinal Methotrexate injection tomorrow while she is under sedation for her dental work. The scary: this is the drug that at least at one point was thought responsible for the outbreak on her hands and feet. The good: the Methotrexate will be the only chemo med given to her until Tuesday, so we will be able to isolate it as the culprit if there is a reaction. The good: upon further study it is unlikely that the very low dose of MTX that Phoebe got was responsible for her specific reaction. It is thought to be more likely related to her septic shock. The scary: here we go again, and we weren’t anticipating it until next week.

She continues to become more “Phoebelicious” as they wean down the Methadone and Valium dosing. She growls in her playful manner, has more spontaneous talking, speaks in complete sentences and is more clear in the eyes. If I cough, she says “You okay Mom?” or “Bless you!”, sweet girl. She is so observant. Another not-so-great effect of the weaning, is that she is now beginning to feel all of her aches and pains from being in bed for so long. She can not lie down on her back because her lung capacity becomes too diminished and she can’t breathe, so I have to change her diapers with lightning speed to get her sitting up again. She also holds her lower back and complains that her legs are hurting, so I have spent the last couple of days trying to massage her when she would allow me.

I don’t have a lot of wind in my sails tonight since I spent the last 2 nights at the hospital, but I want to ask for prayers for Phoebe tomorrow as she has her tooth removed and receives her Methotrexate injection, that she would do well with anesthesia, that both procedures would go exactly as planned and that none of this hinders our home-going. I have three little boys who are VERY excited about the opportunity to show off their little sister to the neighbors and spend some time here at home with her!

~Amey

The instuctor nurses have been calling and coming by today and you know what that means? We are being prepped to go home for the weekend! It is still undecided, but we are headed in the right direction with good, level sodiums, successful oxygen weaning and a little Miss who keeps asking for milk and to get out of bed. She hasn’t passed her swallow exam quite yet although she IS swallowing sips of water and small bites of applesauce for her speech therapist. I’m not sure what qualifies as a “pass”, but in my opinion she’s doing great! I will be glad when I can fulfill her request for milk!

While Phoebe was in ICU it was discovered that she had a large cavity in one of her teeth. Apparently chemo does a number on the teeth alongside everything else it does, and dental issues are not uncommon. None of my boys have ever had a cavity, so it was a little sad she should have such a large one at such a young age. On Thursday she will go to the OR for sedation and removal of the tooth. This procedure could be a set-back for going home if she has difficulty with sedation or the procedure itself. Also, her fluids will have to be turned off the night before and any time Phoebe’s fluids are altered, her sodium tends to swing out of healthy range.

Please pray for everything to go well with the procedure and that the endocrine team will handle her fluid situation with wisdom so that she will stay on track with her stable sodium levels.

The tentative start date for the next round of chemo is next week sometime. Phoebe’s healing mouth will play in to that equation, but otherwise she is doing well enough to begin her next round. I feel a heaviness even thinking about starting this all over again. She is finally coming back to us and manifesting her sweet, silly self and we have to knock her back down. This is the heartbreaker with chemo. If we had the luxury of waiting longer, we would, but AT/RT is sneaky and fast and not something to be trifled with. All of Phoebe’s residual issues from her bout with sepsis are reversible, the loss of muscle tone, the swallow reflex, the fatigue…the only thing in Phoebe’s body right now that can’t wait to be dealt with is the cancer, so here we go again.

And I’m happy to be here. Because to be here means I’m not the Mom I saw weeping the other day on the patio, clenched fists wringing out the grief of saying goodbye to her 7 month old that fell head first out of the grocery cart. And I’m not the mother who has just taken her child home on hospice care. To be here means that I’m not keeping vigil at the bedside of my septic daughter waiting to see how things will shift. To be here means that we get the opportunity to fight again. Living in the ICU for 3 weeks lends a certain amount of perspective to our situation, and turns any self pity I might harbor into gratitude that we are where we are today.

Getting to take Phoebe home for a few days and have everyone under the same roof at home would be amazing and a great morale booster for all of us. I keep imagining her face as we stroll her out into the sunshine for the first time in three months and it brings tears to my eyes every time. I pray that is a sight I get to behold very soon!

~Amey

Below is a message from Phoebe.

An Ommaya Reservoir is a port placed in the brain ventricle for the delivery of chemotherapy to the CSF fluid. In Phoebe’s case, the reservoir would allow chemotherapy to be delivered directly to her tumor site where any lingering cancer cells might be. In an earlier post I mentioned our discomfort with the idea of delivering Methotrexate directly to Phoebe’s brain because it was suspected that this drug may have been responsible for the blisters and swelling on Phoebe’s hands and feet as well as the somnolence she experienced the days following her last spinal injection.

We were told to consider the idea this week because it is part of the protocol Phoebe is on and is an extra punch to those nasty cancer cells, but that is wasn’t totally out of the question to skip it and continue to give Phoebe her intrathecal chemotherapy through lumbar puncture. Today, Phoebe’s neurosurgeon and oncologist met to look at her MRI scan and discuss the placement of the Ommaya Reservoir and it was decided that her ventricles are too small for proper placement.

Part of me feels glad and relieved, and sure that God knows she doesn’t need it and that is she getting to pass on a procedure that might do more harm than good. The other part of me feels nervous that she is missing out on an important part of this protocol. There is a sense of peace though, in having the decision made for us and not having to go back and second guess if we are doing the right thing. So, no Ommaya for Phoebe. I can’t say that I was excited about the prospect of another brain procedure, no matter how small. I’m glad Phoebe is getting a break.

Today was eventful, with some more dehydration. I have to say, I appreciate that I feel “heard” by the nurses and doctors on the HEMONC floor because as soon as I told them I was seeing Phoebe demonstrate symptoms of dehydration, they gave her fluids and consulted with Endocrine to get more fluids in her feeding regimen. Later in the day when I noticed that her resting heart rate was still high and told them that I thought she was still dehydrated, they agreed and gave her more fluids again. So NICE to be able to work together to see Phoebe feel better.

We didn’t end up having a jewelry party last night after all, she was having a rough night and struggling with withdrawals, agitation, insomnia and dehydration. Her breathing still needs to improve quite a bit before we can consider going home and her dehydration and fluid balance need to be stable as well. In spite of her sleepiness today, she was a champ in her PT, OT, and Speech therapy. She drank from a straw and swallowed some pudding and is on her way to being an eating, drinking person again very soon! Her little legs are like sticks and are so lacking in strength, but she still scoots forward on that chair and leans toward me to try to stand on her legs. Her motivation to work hard is so beautiful. She doesn’t whine or complain or give up…she pushes through even though it’s uncomfortable. She impresses me and she teaches me. If she’s not losing heart, how can I? She is so brave and I am so proud of her.

Tonight I sleep at home and Grammy pulls the night shift. I wish I had some pictures from today to share, maybe next time. Thank you all for praying for the Phoebster. She is an amazing girl and I am so proud to be her Mama.

~Amey

Deacon is on my mind today. He is such a sweet expression of God’s love and I have been touched lately each time he prays. Often we pray over our meal and then Deacon will say “Wait, I want to pray too!” then he has us all hold hands for a second time and says “Dear God, please heal Phoebe and make her good.” Last night after he prayed he leaned over to me and said “And I pray for Phoebe that she will be nice so she won’t pinch me like she did before she went to the doctors.” Silly boy! I personally would love nothing more than to see Phoebe well enough to torture him with her little pinches again, but I didn’t tell him that. So in honor of my sweet little Deaconator, I’m posting a poem I wrote about him while we were living in Mexico when he was Phoebe’s age.

‘Caught’~

I have escaped unnoticed to the trampoline.

Pride and Prejudice in hand, I slink away like a guilty thief to steal a piece of quiet.

I settle in. Ahhh…

“Mama! Are you??” I hear the sweet muffled voice inside the house.

My heart wrenches toward my small enquirer.

But no, I will give myself at least a few pages of respite.

Wait.

I spy his small frame at the back door window pane.

I freeze, like stunned prey.

Maybe he won’t notice me.

b r e a t h e   s l o w l y

Make no sudden movements.

I smile despite myself as he flattens his nose against the glass.

Silly one.

He vanishes from the door.

Alone. Me and Jane Austen, Mr. Darcy, Elizabeth…

A burst of excited giggles rain down on me like tiny bubbles of sheer joy exploding in mid-air.

I have been discovered, and it is sweetness to my soul.