Bumps in the road at the starting line

By -
Brian and I keeping waiting to hear any good piece of news to come from her medical team as we cope with this diagnosis and begin treatment, but we were dealt another blow today. Her doctors do not feel she will be ready for release (due to many factors) for another 10-14 days....I want to believe she will surprise them all and be in a good place to come home much earlier then that. But we do not know and they want us to be prepared for her to be here for that length of time. She has been out right refusing anyone to try and cheer her up. Physical activity has been limited but is really important for her lungs and overall help. I took her kicking and screaming into a wagon ride but within a few minutes she settled down and quietly pouted. I wS honestly happy to hear her crying and fighting as she has been so lethargic. She has very little interest in trying to be cheered up at the moment but now that she had a break from the actual chemo perhaps she can be on the recovery side and start to feel more like herself once we over come some of these obstaes keeping her from getting home. Thanks again everyone for everything. You are each playing such a big role in how we are coping and pulling through at this time

Comments

  1. UnknownMarch 24, 2016 at 5:31 PM

    Jennifer, as today as Holy Thursday, just one day before He died on the cross, it comforts me to know He is suffering alongside your beautiful baby. Please count on our prayers as Charlotte gets well. God bless you always! Love, Colleen Murphy Duggan

    ReplyDelete
  2. jenrvballMarch 24, 2016 at 6:33 PM

    Thank you Colleen. We are feeling everyone's prayers

    ReplyDelete
  3. jenrvballMarch 24, 2016 at 6:34 PM

    I forgot to mention that we were moved back to a room yesterday so that is good news! We have a door again and a quieter place:)

    ReplyDelete
  4. UnknownMarch 24, 2016 at 11:29 PM

    You will get through these bumps and Charlotte will be out of there in no time! When I wake up in the middle of the night my thoughts go right to Charlotte. I say an extra prayer that you all are having a peaceful night and able to get some rest. You're always on my mind each and every day. Much love to you all xoxo

    ReplyDelete

Post a Comment

Popular posts from this blog

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

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

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