This is getting annoying....everytime I talk to doctors I get hives now! I have talked to 4 doctors in 20 hours........
A few notes:
Haven has surgery on both eyes on March 26th
Pulmonology is rescheduled for January 23rd
Haven is not in chemo today - it is rescheduled for Friday Jan 16 - after blood work
She will still have blood work done tomorrow morning to check her levels
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.
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ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
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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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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
I love all the pictures of Miss Haven! I pray her blood work and chemo this week goes well for her! I just want you to knonw that I'm praying for a cure, and that Haven and your family are always in my prayers. Poor Baby!
ReplyDeleteWith Hugs & Lots of Love,
Sandi Maroney
C.O.L.E. Prayer Team
www.colesfoundation.com
Thank you so much for your thoughts and prayers! We greatly appreciate it.
ReplyDeleteHugs and love
Fowlers
Hi Misty and Haven
ReplyDeleteWe love you and hope all goes well with the chemo and surgery. good luck with Pulmonary. Sophia has her second sleep study on February 7th. i hope it will be better new's this time. she has her eye appointment next thursday. well you know what it's like appt. every week.
Love
Maureen and Sophia
Hi Haven,
ReplyDeleteJust stopped by to say Hello. I found your site through the MACS site. My son was featured on there back in April of '04 and got so much nice mail from so many nice people. We will put you in our prayers and hope that these doctors can get you figured out and on the mend. It is just not fair for such a cute girl to be so sick!!
Hope you have a fun birthday weekend next week,
Alisa
www.caringbridge.com/ut/devinross
tiredofcancer@yahoo.com