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Crystal was born on May 8, 1989. At birth she appeared to be a healthy baby, but at approx. 6-8 months of age we began to notice that she could no longer roll, or sit without support. By 10 months of age her pediatrician was concerned as well and sent her for tests. She had blood tests done and EEG and a muscle biopsy. The results took until she was 16 months of age, at that time we were told that our little girl has Spinal Muscular Atrophy (SMA) type 2. Crystal continued to be healthy until at least age 3 then she developed her 1st bout of pneumonia and had to be hospitalized. From there she has continued to have respiratory issues and has been in hospital approx. 175-200 times for pneumonia and collapes of the left lung. Crystal has endured several surgerys over the years. At 4 years old she had a spinal fusion. Approx. 6 years old she got a fundaplication and a G-tube for feeding. Then a port-a-cath for IV access around 9 years of age. As she got older she developed sleep apnea and requires a Bi-Pap, and uses an inexsuffulator and volume stacking mask, as well as puffers. Over the years Crystal and our family have become very acustom to the frequent hospital stays and respiratory issues. Then in January 2003 Crystal started to become very fatigued and was having severe nose bleeds at first the E.R. said it was damaged blood vessels in her nose from her Bi-Pap, then on January 14, 2003 we were told that Crystal was now faced with yet another challenge she has Acute Lymphoblastic Leukemia (ALL) After all she has been through our hearts sank as we just didnt know how she was going to survive this. It was very difficult to tell Crystal that she has Leukemia, but through it all the only thing she kept telling us was "I can do this." She is such a strong young girl. We met her oncologist Dr.Isreals and the nurse Cathy to discuss our options. One of the first questions we had was "Have you ever treated anyone with SMA and Leukemia together"? The response was "No I'm sorry we have not" and the search began Dr.Isreals, Cancer Care Manitoba, Muscular Dystrophy Canada, Muscular Dystrophy America, and SMA Canada were all checking thier connections to see if anyone else has ever been through this. After all the searching no one was found and it seems Crystal is the only one with SMA and Leukemia that we know of. Although this was discouraging news Dr.Isreals, Cathy, and Crystal were all up for the challenge. We talked about the types of chemo she will need and the side effects. ALL can also get into the spinal fluid so chemo is injected by having a spinal tap, but because of Crystal's severe scoliosis (from the SMA) a spinal tap is not possible. The alternative to treat the spinal fluid was to put an Omaya Resovoir into her head that has a small tube that goes into the center of the brain where the spinal fluid is made. This required yet another surgery, Crystal did very well and has no signs of Leukemia in her spinal fluid. Vincristine is one of many chemos that children get to treat ALL, but it also causes muscle weakness, something Crystal already has due to the SMA none of us knew what this med would do to her. Thankfully she is so strong willed she manages to take the med, it has caused some weakness but she does not complain and just adapts her ways of doing things. Most of her activities like eating, writing ,reading, and working on her laptop are done while she is lying down. Unfortunatly those are things she can longer do while while sitting in her wheelchair. Now 2 years later Crystal is on maintenance and doing extremely well she has approx. 6 months of treatment left. Her courage and strength keep us all going she truely is an amazing young girl!  Crystal received chemotherapy for 2 years, 8 months and 1 day!! On September 15th, 2005 she received her final dose. Crystal is now cancer/chemo free for the next few years she will continue to see her oncologist once a month, eventually she will get down to once a year. As remarkable as she has done during the chemo treatment there has been other issues that have surfaced, possibly due to some of the chemo meds and very likely from the Spinal Muscular Atrophy. On March 26th Crystal had a near death experience, this changed our/Crystal's life as we knew it. On June 9th Crystal got a tracheostomy so she has a secured airway and is on a ventilator at night time or when she tires out. Along with that she is now a 16 year old with Osteoporosis. She will recieve I.V.treatments for this. With all that Crystal has endured and overcome she is truly an inspiration to us all. One thing we have all learned from Crystal is if she says "I can do it"!! I'm on her side and I will never doubt her! Keep smiling my girl, you brighten each and everyday. We are truly blessed to share each day together! 
 Click here for The Snowglobe of the Month   *HUGS* TOTAL! give Crystal_lee more *HUGS* 
 Journal Friday, June 13, 2008 2:23 PM CDT Hmmm...where to begin? Links: |
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E-mail Author: cheryl_rondeau@hotmail.com |
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