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Grace Elizabeth Cain's Update 
Almost 7 years out!
Grace was born on July 1, 1998 to Jonathan and Susan Cain. She has always been a fun-loving and full-of-life little girl. Grace is quick to smile and even quicker to speak. It seems that she started talking in the delivery room and she hasn't slowed down since.
Grace had a very difficult month in September 2000. She had a number of viruses that resulted in Pneumonia. In investigating the lingering symptoms of her illness, her pediatrician gave us the news no parent wants to hear. Grace had a 7cm tumor in her abdomen. Dr. Trowell even mentioned the "C" word at that time. That was on September 29. The following few days involved a multitude of tests. After a major abdominal surgery we had a definative diagnosis - Stage III Neuroblastoma, a cancer of the adrenal gland. Grace had eight rounds of chemotherapy and has completed a second surgery that removed the tumor!
Praise God - Grace completed extensive tests which showed no evidence of disease! She's completed 14 rounds of radiation therapy and an autologous bone marrow transplant (ABMT) at Duke.
Thank you for all of your prayers and support!!!
Journal
Tuesday, June 5, 2007 9:32 PM EDT I am always surprised by how quickly time goes between updates....
We are all doing well and continuing to enjoy each precious day Here is the latest on everyone...forgive us if it sounds a bit too much like a holiday newletter
Grace will be turning 9 (where does the time go?) In about a month and is finishing up third grade. She continues to love anything and everything to do with horses. She competed in her first horse show in the fall and did well. She also still plays soccer and after about 5 years of playing, finally scored a goal in a game this spring. It was most exciting, with Mom bursting into emotional tears Most of the time it is those “regular kid” moments that make us catch our breath! We cried all through a PTO program this spring as Grace line danced with all the other third graders. The girls always enter the Dixie Classic Fair each year with decorated themed apples. For the last few years, Laura has gotten a ribbon and Grace has gotten nothing. This year Grace won not only the blue ribbon for her age category, but the purple judge’s choice ribbon for the best in show of all the age groups, even adults She also won $17 which will almost cover the cost of the craft supplies we had to buy (Laura got 2nd place in her age group!) Grace also won a reading contest at her school. She received a bookstore gift card for a good number of points from taking tests on stories that she read. She is a great reader but more importantly, she truly loves to read more than anything. She literally reads all the time...in the car, under the covers etc. She and mom are to a point that they frequently share books and recommend good reads to each other.
Third grade has been a great year for Grace, but it has been a big change as well. She had to get used to the idea of actual letter grades. Also, there is just such a huge amount of information to be mastered in third grade. Grace becomes stressed whenever she has to master something new...she just wants to know everything already and be perfect at it So you can imagine how she handled all of the many new concepts of third grade In addition, Grace does very accurate work but she works very slowly. This sometimes meant taking quite a bit of time each evening on homework. She struggled with being overwhelmed and trying to be perfect as she is quite competitive. There were quite a few tears and late nights. She has done quite well though. She has great grades (all A’s at this point) and has tested well on her end of grade tests. She does not have a bit of evidence of cognitive damage from the chemotherapy.(unless you count being a ding bat which is probably just genetic ) She, as has always been the case, had wonderful teachers again this year. They moved heaven and earth to accommodate Grace’s hearing needs as well as offering a great deal of support during Grace’s stress related melt downs. They seemed to know just when to push and when to pull. Grace learned so much under their direction She has always been a fine math student, but in the past has not felt confident about her abilities. Her teachers, this year, while good in all areas, seemed to really excel at teaching math and Grace’s abilities and attitudes towards math really blossomed. It was such fun to see and we are so appreciative of this special gift. They have certainly helped to foster a love of learning.
On the medical front, it has been quite a wild ride. For starters, all of Grace’s annual testing, at WFUBMC, last summer was good. Her pulmonary function, which has been something of a concern for the last few years, was actually improved. We will be going in again in a few weeks to have this all done again.
In the fall, we had the opportunity to participate in a clinical trial to evaluate a pair of new hearing aids that were equipped with developing technology. The new technology was designed to specifically help those with the atypical high frequency hearing loss that Grace developed due to treatment. There had been some success seen but it had not been tried on a patient whose loss was as significant as Grace’s loss. It was also a good opportunity to have input from literally around the globe on Grace’s case. In the end, the new devices and programs did not help one bit. We did, however, go to a more open hearing aid mold as a result of this which has been very successful. They let in a great deal more sound and are much more comfortable for Grace. It was eye opening to be a part of the trial and to get so much data on just how little she actually hears. Because she functions so well, you would never know the constant struggle she has each day. We are continually amazed at how well she functions in school with such a significant deficit. She is quite a girl
The biggest news medically is that it appears that Grace may have Epilepsy. We are still awaiting a final diagnosis. On the evening of February 22, Jonathan awakened at 1am to a sound coming form Grace’s bedroom. We had all been passing around a stomach virus that week and Grace had been sick that evening. Jonathan went to Grace’s room expecting to find her getting sick in her bed but what he found was Grace in the middle of a full blown seizure. After calling Mom, we watched the seizure for another 30 seconds of so. It took Grace several minutes to come around and to regain muscle control. Of course, our immediate and worst fear was a relapse to the brain. Dad rushed her to the ER while Mom waited on grandparents to come over to watch the 2 sleeping little sisters. Once at the hospital, Grace had labs, a CT of the brain, an EEG and an MRI of the brain. We were there about 24 hours and it was pretty intense. All of the tests were clear which was such a relief. Being in-patient was extremely hard on Grace as well as the peripheral iv. She just kept crying that she wanted to be in school playing kickball with her friends. It definitely brought up some powerful memories that we generally try to ignore. One bright spot was that she was cared for by our first nurse that we had at diagnosis, Carrie. She holds such a special place in our hearts and it brought comfort to a difficult time to have her there for reassurance. We ended up with a diagnosis theory that the virus had induced the seizure and that it was not related to neuroblastoma. In addition, Grace had an eye examination earlier that day and there is some loose.correlation between the dilation drops and seizure. As the weeks went on, we were able to let go of a bit of our heart stopping terror. Then on the morning of May 4th, Grace had a second and milder seizure while getting ready for school. She was conscious for this one although unable to communicate. It lasted about a minute and took her another minute to regain control and speak. She may have had an aura that preceded the seizure as Grace reported knowing that something was off before it happened. Laura and Mary were with her during the seizure so that has added a whole new dimension of family stress to the mix Again we went back to the ER, but because her scans were so recent, they were not repeated. She had a sleep deprived EEG a few days later that again was clean. Typically, medication is started after a 2nd seizure but because the docs still felt that the first was caused by the virus and because the side effects of the seizure meds can be so significant, she is not medicated at this point. If we do see a third seizure, she will start the meds and will have another MRI of her brain just to double check that there is no disease there. Grace is very worried that she will have a seizure at school. However, the seizure meds have some tough side effects behaviorally and cognitively so we are willing to risk waiting. Also, most patients continue to have break through seizures while on the meds., particularly at first, so it is far from a “magic bullet”. It has been very scary and confusing. We have gotten lots of differing opinions from her oncologists, pediatrician, a couple of pediatric neurologists etc. and we are hoping that we are making the right decisions for Grace. We are slowly letting go of the relapse school of thought. None of the docs seem to think that any of this is disease or treatment related, but rather just dumb bad luck. It has been and may continue to be a rough road and we appreciate your prayers We hate living with this constant anxiety, but we are so blessed to have Grace with us to continue to worry about!
On a brighter note, little Laura is turning 7 in a few weeks, 2 days after Grace turns 9 She is finishing up first grade with the same super sweet teachers that Grace had She continues to love all things dance related. She whirls and twirls constantly, making us all sit down for shows that she makes up, complete with admission tickets She has made many new friends this school year and is losing some of her shyness. She has a phenomenal memory as well as good eavesdropping skills. She is always relaying snippets of information about other students She has some of the funniest outlooks on things that happen There is a little boy that drives her crazy in her class. She recently said that she didn’t like him very much, but she pretends to like him because that is what Jesus would have her to do Her theology is definitely a bit skewed but her big heart is trying its’s best She greatly enjoys school and has made huge progress in reading this year. She is currently working on learning to ride a 2 wheel bike and almost has it mastered. She is very athletic and can run very fast, frequently winning running events in PE. She, however, rarely exhibits these skills because she doesn’t want to get hot She is a great little sister, always boasting Grace’s ego, and a great big sister to Mary, as well. She is so dependable and can always be counted on to supervise Mary and to help Grace to remember her lunch and jacket each day. She loves her sisters with a fierceness that is amazing. Grace’s 2nd seizure took place on the practice day of Laura’s much anticipated dance recital. Whenever we told her that she may have to miss the practice and possibly the recital, her only concern was for her sister. Thankfully it did not come to that and we made it to both events Laura did great in the recital but her favorite part was getting to help carry the acrobatic mats off of the stage She is quite a girl who keeps us on our toes by asking the big questions like,” Who will take Santa’s place whenever he dies?”
It is hard to believe that Mary will be turning 3 a few days after Grace and Laura’s birthdays. We usually have the girls’ party together (Grace is July 1, Laura is July 3 and Mary is July 6). This year Mary is insistent that they will have a party at the pool. She is famous for her “out there” plans and she says that at her party she will swim across the pool, holding her lighted princess cake while we all sing to her She is also insistent that she will be riding on a whale whenever we visit the beach later this summer She is a load of fun and we all enjoy her so much. Grace is definitely a parent figure to her while Laura is more of a playmate. She is really looking forward to having the girls home for summer. She will often cry whenever they are dropped off at school. She is quite the water bug and we are planning to keep her entertained at the pool most days this summer She loves music and attends a little class each week at the local childrens museum. She is also a marketer’s dream and loves everything that she sees...Dora, the Backyardigans (she has assigned each family member a character from the show that we have to pretend to be), Cinderella, Little Mermaid, etc. She loves everything girly especially dress-up. She will be starting preschool in the fall and is really excited about picking out a backpack. I think that she is going to like school supplies as much as her sisters. She is a very funny little girl and she keeps us hopping
Finally, Mom and Dad are good. Mom continues to substitute at the girl’s school. She is also turning 40 next year and has opened a Disneyworld account to save up for a trip to commemorate this occasion. She has had a lot of fun planning for this trip already Dad is fine as well. He had a glitch with giving platelets a few weeks ago and ended up with a tough looking arm. We are ever mindful of all of those life saving donations that Grace received.
Thanks for checking in on us even though we rarely update. Thank you for your prayers for us as well as the other children who are in this battle. We are continually thankful for each day and the blessings that it brings. We also continue to hold all of the children and their families that we have known and loved that have lost their battle with this wicked disease and others. God Bless.
Read Journal History
Links: http://www.caringbridge.com/wv/jonpowell Jon Powell's website - Grace's Neuroblastoma fightin' buddy
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