Monday, March 8, 2010

A Different Life

My Thoughts about the Movie "My Sisters Keeper"

I have not posted lately, but there has been many times where I have wanted to sit down to write my thoughts about our journey. However, for many reasons I have not. One of the main reasons I have not posted is I have often felt lately that my words cannot express enough both the joys and pain of going through this journey with our son's leukemia diagnosis. Today, I sit here as the sun is shining and I am feeling a sense of ambivalence about my emotions. I feel happy about how far we have come, but also sad because I have reminders everyday of how life will forever be very different compared to any other family stricken with a disease that causes much concern.

Lately, I have heard many people speak of the movie "My Sisters Keeper" identified as a good movie. This movie can truly only give outsiders a very small glimpse into the lives of a family that deals with a child having cancer. It is interesting that most people who are not living the reality of this journey can easily describe this movie as great movie. A small part of me can appreciate that this movie may be considered a "good movie" based on entertainment value. However, a very different perspective may be given by a family that lives this life everyday. This movie for most "normal" families is considered a night of family entertainment that can be turned on and off. Perhaps, most people would be emotionally triggered by watching this movie, but after a few days would be pushed out of their thoughts. We and many other families who cope with a child that has cancer cannot just turn off the television. We don't get to watch a movie like "My Sister's Keeper" as entertainment value because we live this life every single day. We have concerns of relapse, side effects that could cause secondary cancers from chemo meds, and the list goes on. I fear that some individuals view this movie only as entertainment value and is easily shut it off without some afterthought as to how you could get involved in making change. I want to encourage everyone who reads this post, especially those who are not stricken with disease in their family, to reach out to someone or some cause that contributes to finding a cure for cancer. You may not be able to comprehend all factors of this journey, but you can contribute to worth while causes for change so that we can decrease the rate of cancer happening in children and families. Mike and I at this stage of our life cannot watch this movie. We have found it very interesting that there has been a few people not living this life have come out to make a statement about this movie, but soon after realized that this was not a good choice. Even the Oncology medical staff have went to discuss this movie and have realized their mistake. We can truly appreciate that you may not understand and we certainly don't expect anyone to understand that has not gone through this journey. In my opinion, most families who are on a similar journey as our family only expect family and friends to not disregard our journey, to be sympathetic and also allow us to be in our moments both good and bad when needed. Also, that we still know how to have fun and laugh, so we don't want anyone to be fearful that you cannot be yourself. We often find that some people fear telling us about their situation because it will only seem trivial compared to what we are going through. Please know that we wish to only be hear for our family and friends. We know that we all have struggles some greater than others. However, pain is pain no matter what the cause. The most important aspect of pain is to be able to share and talk about it so that it does not become internalized, which leads to much destruction to oneself and others.

I have days where my emotions surface about this journey that I am taking and find that it is hard. Our family could not have done this journey or continue on this journey without God's hand upon us. We have seen God's protection over our family from the beginning. I am still human and still have days where my emotions surface and remind me that it is hard, but I then have to be reminded of God's truth in his Word that says "Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strenghten thee; yea, I will help thee; yea, I will uphold thee with the right hand of righteousness (Isaiah 41:10)," and "I can do all things through Christ which strengthens me (Philippians 4:13)." I don't always understand this journey that our family is taking, but I do know that our faith in God increases with every trial and tribulation when we trust God. My prayer is always for healing and protection for Gabriel and protection for our other children as Simone and Yasmine have a 4 times greater risk to get Leukemia compared to families without Leukemia. Most importantly, I pray for continued guidance in how my life can be one that glorifies God as we are called to do this act above all. I have to trust God that our life and this journey will one day serve to glorify Him. It is knowing this end that brings me comfort. It is when I lose focus that my burdens seem hard to bear. I intend to serve God wherever His will leads me. Please continue to pray that my eyes will be open and my ears listening to the Holy Spirit's prompts to fulfill God's will in my life and that all I do will serve to only Glorify God and never myself. I pray that my spirit will never be one of self-seeking, but only to fulfill our call as believers in Christ to fulfill the Great Commission of going in to this world to spread the teachings of Jesus Christ to all the world.

Our Journey as of March 8, 2010

Gabriel started maintenance almost one month ago. Our life has felt somewhat normal as we have been able to go in the community, visit family and friends, and able to attend such things as Disney on Ice and the ROM in Toronto. We even took our kiddos to Chucky Cheese's. We are overjoyed more than anything that we could start back to church as a family this past Sunday. We have been enjoying being able to get out with less concerns of infection. However, we still have to be cautious of certain diseases that could be in our community. There has been lots to organize upon our arrival back to church as our congregation has to be informed of risks of chicken pox and measles for Gabriel. We are thankful for the support of our church and have been working to protect Gabriel through many measures. We have done our part to inform people, so now more importantly, we need to trust God. We recently visited Gabriel and his sister's (when old enough) school and began the process of preparation, as it is similar to the measures taken for church. Gabriel is very excited about attending school. We are thankful that we are able to send our children to a small school called Trinity. Gabriel's senior Kindergarten class has only seven children and the entire student body at their highest is 100 children from grades 1-8. We had thought about this school prior to Gabriel's diagnosis, but was uncertain. However, with much to consider with his diagnosis, immunizations of kids at particular schools and our concerns about the public education system we chose this option for our children.

Maintenance thus far has involved mostly chemo meds given everyday at home, but with one day a month at the hospital to give IV chemo. This schedule sure is better after having to be at the hospital sometimes three times a week for a straight two week period each month for one year. The responsibility for chemo is placed more upon the family at home, so lots of responsibility for meds everyday.

This phase causes lots of different emotions. These emotions are sometimes insecurity because you are not at the hospital a lot with the care of the medical staff. We often read the posts on a website for parents discussing their children's progress with Leukemia. It is during maintenance that the fear of relapse surfaces. We had a scare last week when Gabriel spiked a fever without any other symptoms. Much fear surfaced that evening, especially after reading a post where a mom wrote that this was always a sign of relapse for her child. I am standing firm on my faith that Gabriel will not relapse. That evening as his fever was rising I prayed over my son. I know that many people look to medical explanations for events, but there are many times you cannot explain medically why things happen. We cannot give Gabriel fever medication because it can mask an infection that has to be treated immediately. My son's fever began to drop that evening within a matter of an hour. I tested his fever numerous times prior to praying (testing numerous times was done more out of fear), but after praying I began to see the thermometer numbers start to decrease. My husband and I don't know the cause, but we do know that God protected him that evening as he continues to do. His fever was gone completely.

The next two years will have days of concern and days of joyous celebrations, but I pray that my faith continues to grow. I pray that one day my life testimony will be able to serve God in ways that my flesh can not comprehend at this time.

Simone and Yasmine are getting big. Simone is a little over two and Yasmine is now four months old. The girls add so much joy in our lives alongside Gabriel. Our children are truly blessings. Our family of five has the typical family drama of temper tantrums, fights that make you wonder, and much more times of happiness and silliness. We are looking forward to the warm weather, camping trips this summer, cottage time and camp trillium. We also have been rewarded with a wish to be granted by Make a Wish. We are currently planning this trip this week and will keep you all posted about our wish once decided.

Thank you for spending some time reading about our family. We truly appreciate the time you take to walk a little with us during this journey.

God Bless!

5 comments:

  1. Michele SlatteryMarch 8, 2010 at 2:29 PM

    Hey Tina...good to have a post from you.We will continue to pray for your family.My husband is a cancer survivor so some of the feelings you have expressed is a lot like what we have dealt with over the years.Our fears for the health of our children as it has pretty much been decided that Tony's cancer was genetic.They need to be watched and tested when they turn 19.
    God has truly used this in our lives as a testimony and to strengthen us.Love and blessings Michele

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  2. I didn't see the movie...but read the book...she's a good writer. what struck me as I read, was that though cancer was the reason for the story -- it was not the entire story. They were still a family living life, relating as husband & wife, parent & child, children growing up into individuals, having low points that had nothing to do with cancer -- just the low points that living will bring, and having moments that thrill -- because life is like that too.

    I thought of you, my best friend as I read, because I know cancer is now part of your story -- part that those who haven't experienced it can't really understand -- but it isn't the whole book. I love that you keep your faith and carry on as a family.

    Love to your family,
    Kyra

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  3. Hi Tina,
    Thank you for sharing your news and personal comments about your family's very special journey.
    It is so good to see you back amongst your friends in the church.
    Our prayers continue with you and we look forward to many 'bright' days ahead.
    How exciting to be able to go on a trip with Make a Wish. We look forward to hearing more!
    May God be With You!
    Love, Jackie

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  4. Hello,
    I have stumbled upon your blog through a link from a mutual friend on FB, and feel compelled to leave at least a brief note to let you know how much your description of people's response to your journey resonate with me.
    I have a daughter, three and a half, who struggles with an as yet undiagnosed condition that affects her strength and development in various ways. And I have a son, 21 months, who is healthy and vibrant in so many ways. Your journey and mine are different, but there are common threads, like the common family triumphs and challenges and the ways that health issues in your children can shape how you experience both.
    Cancer, especially in prescious young lives, brings with it an incredible intensity - in the daily walking through treatment and recovery, and in the gravity and uncertainty of potential outcomes. I hope that I never come to understand that in the way that you now do first hand, but I am grateful that my journey gives me insight and empathy for others on their roads.
    You say that you "have to trust God that our life and this journey will one day serve to glorify Him." I believe you will find, when that day finally comes, that you already bring Him glory, in your encounters every day, within your family, with other patients and parents, with people you've never met who stumble on your blog and may not comment.
    I pray that His peace would be upon your household, that your trust and faith would continue to grow that His will would prevail. I pray that the Spirit would be with you daily and support you in your responsibilities in this maintenance phase, and in caring for your whole family.

    I will stop by again soon.

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  5. Thank you everyone for your comments. I just wanted to add something after I read yours Kyra. In reading your comments I can appreciate that what you were able to find in the book as this is how you are able to relate based upon your life experiences. However, when you ask a mom or dad about their life when your own child has cancer it cannot be simplified into relationships. Often times we pull out aspects in books or movies that we can relate to, which most of us can concerning relationships. However, ask a family with a child who has cancer whether they can see the same plot and most will tell you that the aspect of relationships may be comparable to when a famous person makes a cameo appearance. For us, it is the small aspect of our story, but for a movie/book it makes the plot thicker. This journey has the meaning of relationships, but it has so much more that a book such as that cannot tell. When it depicts individuals growing up...most moms and dads pray and hope their children do grow up. When you walk in the shoes of a parent who is told their child may never live or your child has cancer...it is more then the story of relationships.

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