Haven F.
Diagnosis: Ganglioneuroblastoma 
Since Haven’s last update she has gone through many changes. Last year saw her in isolation for 5 months at Johns Hopkins as she underwent an experimental chemotherapy treatment never used on her type of illness. She did four days of High Dose Cyclophosphomide (Cytoxin) to reboot her immune system. We are working from evidence of immune suppression results over the past 1 1/2 years of testing different chemo treatments and how they affect ROHHAD.
The doctors were and still are amazed that Haven fought so strong against the chemo and never endured any of the major issues that come along with this high dose. The worst of the actual chemo was the loss of her hair and extreme fatigue. Her problems came with blood transfusions and antibiotics. After a few weeks she contracted C.Diff which kept her in isolation longer than expected. As this was an experimental treatment we didn’t know what to expect if anything. After about two months we began to notice a different Haven. She was suddenly potty trained during the day, her personality changed almost over night from reclusive to loving and caring, she began wanting to play and finally we saw a smile after so long without one.
In October we noticed some areas hadn’t been affected by the Hi Cy and she went in to isolation for another round this time of High Dose Dexamethasone. She did a 6 day stay in the hospital and was allowed to come home. This showed us even more positive results. She was officially taken off her blood pressure medication that she had relied on for more than 2 years and she could start being home schooled with a teacher. Her growth hormone which was negative in May was now at 6% and she was growing.
Haven has progressed very well over the past 8 months since these major treatments. She is currently not on any medication and is about to start a moderated day in school with other kids. This is the next process in her treatment as she hasn’t been around kids since age 2 1/2.
Haven spent 180 days in the hospital in 2009 and is now enjoying only going once every four weeks. She is still monitored with scans and sleep studies every four months but that will change with the next round if all is clear. Haven’s next sleep study to monitor her CO2 levels is on March 6th and her next MRI - which will include head, abdomen, and pelvis is on March 8th. This round her head was added due to her Prolactin levels being around 90 when normal is around 18. The abdomen and pelvis are scanned for any changes in the tumor that is still present or any other signs of cancer in this area.
We continue to fight for Haven every day and are now able to enjoy her hugs and smiles!
Misty (Haven’s mom)
