My 2 year old granddaughter, Sierra Pelletier, has been having health problems since she has been born, especially the past 3 months. After many tests by her pediatrician, she was admitted to the IWK for the week of November 27th. During her time there she was diagnosed with Central Diabetes Insipidus. This is a rare form of diabetes caused by a deficiency of the pituitary hormone, which regulates kidney function. Unfortunately, Sierra will have Central Diabetes Insipidus for the rest of her life. She started taking the hormone she is lacking three times a day, and so far it is helping control her symptoms. At this point we don’t know how else her body is being affected by this condition.
When investigating why she developed Central Diabetes Insipidus, an MRI found that there is a growth on her pituitary gland. This growth is likely one of two things: Lymphocytic Hypophysitis, which is an uncommon autoimmune disease in which the pituitary gland is impaired; or, a Germinoma, which is a tumour (may or may not be cancerous). Both outcomes have treatment plans but are very different. After meeting with specialists and the brain surgeon, they decided that they want to see if there is any growth in a 6 week period before attempting a biopsy and discussing a treatment plan. The biopsy is very invasive and there are many risks involved. Sierra will return to the IWK on January 18th (or possibly a week earlier) for another MRI scan of her brain and spine to see if there are any changes and if the growth has spread. Based on these results, the Oncology team, Brain Surgeon and Endocrinologist will decide on a plan.
There are many expenses involved in travelling to Halifax and the time they will be spending there. Sierra will need to have many follow up stays at the IWK, because they are the only pediatric endocrinology clinic in the Maritimes. Any donations towards travelling and medical expenses would be greatly appreciated.
Update January 19th:
Sierra had her repeat MRI and it was not the news we were hoping for. The growth got bigger, and now there is a round shaped growth attached to the original growth. The oncology team and neurosurgeon had a meeting and decided to do a spinal tap to try to get a diagnosis. She had the spinal tap and the neurosurgeon hopes that the spinal/brain fluid he collected will help him determine a diagnosis. The fluid is being sent to the Mayo Clinic to be tested. We should have the results by January 26th. If the spinal tap doesn’t help determine a diagnosis, she will need to have a craniotomy and biopsy. This is a 7 hour surgery with many risks. The surgeon is hoping to avoid it, but if the spinal tap doesn’t determine anything he will have no choice but to do the craniotomy. Lisa asked him what he thought the diagnosis is based on the imagines and the growth, and he said he thinks it is a tumour. Thank you for the continued love and support!
January 26th Update:
The neurosurgeon called and he wasn't able to determine a diagnosis based on the spinal tap. Therefore, Sierra will be having the brain surgery (Craniotomy) on February 9th. This is a 7 hour surgery with many risks involved. He will remove a piece of the growth and test it to confirm a diagnosis. After a diagnosis is confirmed, treatment will be decided. They will be leaving for the IWK on February 7th or 8th, depending on the weather and instructions from the hospital. Thank you for your support and kind words.
Feb. 25th Update:
On February 9th Sierra had her brain surgery. The doctor had a difficult time getting the biopsy without causing more hormone damage, and wasn’t sure if he had enough tissue for a diagnosis. It would take aprox. 10 days to get t results from pathology. During that time Sierra was healing from her brain surgery. It was a difficult time with lots of swelling and sickness. She had some complications with a steroid leak and needed a steroid to help heal. She also had complications with her sodium levels due to her diabetes insipidus. On top of all this, she picked up Norovirus and had days of vomiting and diarrhea. Finally on February 18th, we got the pathology results and a diagnosis.
Sierra was diagnosed with Langerhans Cell Histiocytosis (LCH). It is a very rare cancer that begins in LCH cells. LCH cells are a type of cell which fight infection. Sometimes there are mutations (changes) in LCH cells as they form. These changes make the LCH cells grow and multiply quickly. This causes LCH cells to build up in certain parts of the body, where they can damage tissue or form lesions. Sierra’s cells built up on her pituitary in her brain to cause a growth/tumor. This tumor then caused her to develop diabetes insipidus. LCH can spread to different areas of the body, especially the lungs, liver and bones. As of today, the oncologist believes the only area Sierra is affected is brain. She will be monitored very closely for years.
Sierra will need a minimum of 6 months of chemotherapy and steroid treatment, with a possibility of 12 months. Her treatment will begin on February 26th. In 6 weeks she will have another MRI to see how the growth is reacting to the treatment, and this will guide the rest of her treatment.
Sierra’s family wants to thank everyone for all of the donations, support and love. The kindness and generosity of friends, family and strangers is truly wonderful. Thank you!
June 17th, 2018 Update:
Sierra has been doing chemotherapy and steroid therapy since February 26th. Her last MRI was on April 11th. The tumor shrank a little bit, but not yet to half the size. The oncologist, brain surgeon and endocrinologist all agreed that the brain damage she suffered is irreversible, therefore she will have Diabetes Insipidus for the rest of her life and will need hormones to control the symptoms. We also learned that Sierra tested positive for the BRAF mutation in her cells, which makes her case of LCH more complicated with a greater chance of re-occurrence. She will be closely monitored, and have MRI scans often for years. Lisa and Arron were in touch with the leading doctor on LCH in Texas, and he will take on Sierra's case if her current treatment is not successful, or if there is re-occurrence. This would likely involve travelling to Texas. Since this is such a rare disease, we would be willing to see the leading doctor if this meant long term health for Sierra. We will return to IWK at the end of August for another MRI. In the meantime, Sierra will continue with chemotherapy, Steroid therapy and keeping a close eye on her sodium levels for signs of dehydration.
Thank you so much for the prayers and support!
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