Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Friday, June 17, 2011
Spring round of IVIG
After Grandma and Grandpa left we had a day of chemo.
Haven has started to not want to see the needle to go in to her chest. She uses a 1 inch needle and her numbing cream. Since doing her Hi CY she has begun to feel a little bit of pain. Not much but a slight amount....so she prefers to not see it now.
However, she is still able to do her own blood work and to flush her port.
Haven is usually awake for about 1 hour out of the 4 - 5 hours of chemo. She slept quite a bit during this round. We canceled her Physical Therapy this day as this usually wipes her out for 24 hours.
We met with her Oncologist and Haven is doing well. Her counts are up (finally) and instead of going every 4 weeks we have been moved to every 6 weeks for a flush (next visit June 27) and every 12 weeks for IVIG (so sometime in early August).
Haven is not scheduled for any more MRIs!!! Her doctors are very confident about her tumor not growing!
Next up is Kennedy Krieger Institute for Neuro-psychology evaluation and Endocrine.
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ROHHAD in Ireland
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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Hi, Haven!
ReplyDeletePlease tell your dad that I said Happy Father's Day to him. I hope you had a great day with your dad and the rest of your family.
With love & prayers,
Wylene