Hallelujah 1 and 2

By -
Hallelujah number 1: MSK called with Charlotte’s bone marrow biopsy results: No Evidence of Disease! My heart is still beating up in my chest as I type this. To see their number on my iPhone caller ID instead of them sending the news in an email alerted me. I must admit, I went to sit down and said a prayer before I picked up. We communicate via email for basically everything so seeing the number made my stomach lurch but nevertheless hearing it is as beautiful as reading it. She’s still clear. Every clear scan or biopsy is a HUGE victory. Every day she is clear, picture the odds against her going down. Every week, month, year that there is no evidence of disease, she is that much closer to truly being cured. I can hardly say the word but we have to picture it. Cured. Today, she’s even closer.

This week, our entire house, minus Charlotte, has come down with various forms of the flu. We keep trying our best to protect her for worry her immune system is already battling so much and may not be strong enough but really...she is the strongest person we know. We will never stop worrying of course, goes with the territory. But today we celebrate! We have exactly 1 month before we hold our breath again as she has complete scans in mid March at Duke.  And we’ll take every sec of it. Flu-schmoo! We’ll take regular Illnesses that run their course any day.

Hallelujah number 2: update from Miles family.
“We asked for one more miracle and I think we got it. Miles’ echo this morning shows that the right side of his heart is no longer blocked. All of his stats are back to normal. Our big issue now is getting his kidneys functioning again. We are cautiously optimistic- every time we’ve celebrated a big victory we’ve been hit with something else. But the fact that Miles is alive and moving forward today with an unblocked heart.. our third miracle this week. ❤️“

I believe in miracles. Let’s keep surrounding this family with love and hope and prayers as we witness this miracle I hope is unfolding. This little guy has been through so much and has come back from the brink of death several times in the past 2 weeks...it’s as horrifying as it is miraculous❤️🌈



This weekend while their dad was battling the flu, these 3  littles all found me in the guest room—for the first time in 11 years of marriage one of us had to move out, and they told me to stay in bed late as they wanted to make breakfast in bed for mommy. Taylor made Aunt Jemima pancakes and coffee all by herself, Parker washed and did blueberries, Charlotte helped with getting water and was the waitress. I mean it’s just a morning I’ll never forget❤️Now the kitchen clean up is another thing all together🙈but seriously...love rains

Comments

Post a Comment

Popular posts from this blog

ROUND 2 under way

By -
Image
It was exactly 4 Monday's ago. We left our pediatrician and ended up here at Duke Children's just about this time of day where we were about to receive Charlotte's cancer diagnosis. It was any parents worst nightmare as we came to learn and understand this diagnosis. It feels like 4 months ago. We are still coping and feeling our way, but never in a million years could I imagine being in this "place" that we are today, emotionally and spiritually. We are still coping and going through the grieving stages, but hearing the news today that Charlotte is healthy enough to begin round 2 was great news. A couple weeks ago, hearing that your child needed chemo was gut wrenching but today it is music to our ears. It means Charlotte has recovered from round 1 and is ready to continue to fight and heal while we all cheer her on. Her spunky spirit is back. She had a wonderful, restful weekend home playing with Taylor and Parker and also getting to see some family and a few f
Read more

Reliving June 13

By -
Image
Today in 2019, was probably the hardest day of my life. You might have thought that would have been the day she was diagnosed or maybe that scary time we had during Charlotte’s transplant, but it was today. We snapped this picture below waiting for Charlotte’s doctors to come into her examination room during her standard check up at Duke. Mere minutes later, we saw more than the normal 4 feet in front of the door (the oncologist and NP that would see her). When the door opened and child life was there—Brian and I instantly knew. Child life had come to distract Charlotte so we could talk to her doctors. The world went into slow motion and I don’t know how I didn’t hit the floor if I’m honest. Brian’s face instantly drained of color. We knew immediately her scans had shown her disease, her cancer, had returned.  After all she had been through, all we had seen, all we had survived as a family…this day drained the hope out of me and I can still have a visceral response remembering it. Of c
Read more

Getting some sleep and planning on a wagon ride!

By -
Image
Good morning! They think we might get to a room later today! Steps closer to coming home! Her X-ray showed improvement with lung fluids. Still fighting a fever and needs oxygen. Finally got put back in solids and ate some bites of spaghetti last night. We both slept better last night too. We didn't get out yesterday so maybe today. We have a wagon and are hoping to take her for a ride maybe even to see the helicopter on the roof:) Got a little kick in the gut with some news specifically regarding her tumor genetics. I was really down and having a hard time last night. But woke to a new day. And Brian has a contact in Cincinnati who put him into contact with a leading researcher for high risk NB and after talking with him we feel better about not just our current plan here at Duke but also about all the new research that hasn't even been published yet which has MUCH better prognosis outcomes for someone like Charlotte. I really needed to hear that and the timing of this doctor
Read more