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!
Monday, March 8, 2010
Monday, December 21, 2009
Continuing on our Journey-Both Joys and Difficulties
It has been some time since I have posted a blog. For so many reasons I have not sat down to write this blog, but felt pulled so many times about sharing both our pain and joys since my last post. However, time has slipped by and here I am finally posting a blog update about our journey.
Mike and I have many moments of both happiness, appreciation of our blessings, but also much pain and sadness. This journey is one that is unpredictable. There are moments when you feel that the journey has become routine and we are coping well, but then a slight negative change causes us to have quick sense of hopelessness. I am soon reminded of God's love and protection that He has provided for our family since our journey began on February 11th. There have been many occasions throughout this journey where many of our family members have become ill, and our son never received any of these illnesses that would have caused him to be hospitalized. In particular, I became ill with the swine flu just after having my daughter. I became overly concerned for both my son and new daughter as they are both extremely high risk. The week I just gave birth to our daughter we were all separated as a family. My daughter Simone was with her daddy at his parents, Gabriel was with my parents at our house, and I was by myself with my new daughter. The week for me became a test of faith that I will never forget. I just shared with my husband that for many weeks prior to this difficult week I remember feeling/hearing the Holy Spirit tell me this exact phrase over and over for weeks "get into the word for there will be more to come." I did not want to believe I would have to go through more tests and pain. I ignored this calling and often times found myself too busy with my kids, feeling tired with hospital visits and being pregnant to read my bible and pray consistently. It was that week when I was sitting at the table alone at my parents I realized that this was the event that I was warned about. I was in constant emotional anxiety and pain that I could not focus enough to read my bible. Satan tempted me and caused much fear that week. I remember going to the basement at my parents house to play on the internet to distract myself, and the first thing that pops up on the computer was the two month old baby that died of swine flu. The very illness that both Mike and I feared for our son and new daughter. Satan's ability to stir fear happens in many ways and that week I was subjected to much fear that it prevented me from focusing on what is the truth only found in God's Word. God does not want us to fear. Fear is of Satan and of this world. God has shown us through this journey his protection over Gabriel and now our new daughter. Every time Gabriel's immune system has bottomed out our case manager has told us that she is close to 100% sure that Gabriel will be admitted to hospital with a fever. This is often the pattern they see at the hospital when children's immune system is suppressed. Every time I was told that by our case manager I prayed. Gabriel has never had a fever throughout this entire journey as a result of a low immune system. This occurrence is only a result of God's protection and answering of all our prayers and your prayers for our family. That week it reinforced the importance of gaining strength, trust and peace through constant devotion to reading the Word and prayer. It is when we let aspects of this world become more prominent that we open a hole for Satan to gain access to our mind. Satan infiltrates our mind so quickly with negative thoughts and fears we begin to lose focus on God's promises that are received when we have our salvation through Jesus Christ.
Prayers went out to God for continued protection during that week. God answered our prayers. "Have faith in God. For verily I say unto you, that whosoever shall say unto this mountain, Be thou removed and be thou cast into the sea; and shall not double in his heart, but shall believe that those things which he saith shall come to pass; he shall have whatsoever he saith. Therefore I say unto you, what things soever ye desire, when ye pray, believe that ye receive them, and ye shall have them (Mark 11:22-24)." The only people in our family who did not get sick were the two people we were concerned about the most-Yasmine and Gabriel. Thank you God for your continued protection. Mike also did not get sick as the antibodies were working from the vaccination for him. Thank goodness as Mike and I know God's healing and protection can come in the form of medication. I became sick a day before I had my daughter with a cough and the symptoms increased after I gave birth. I remembering starting to feel ill with a fever and chills after my daughter was born. My weakened immune system during my pregnancy caused me to get this flu while out in the community.
I wish Gabriel was never diagnosed with leukemia, but one day I know Gabriel will be healed and will have a glorious testimony to share. We continue to see God's hands over our family and we thank Him everyday. We also want to thank you all for your continued devotion to praying for our family. My words cannot express how much we appreciate your prayers and words of encouragement.
Update on Treatment for Gabriel
Gabriel is close to being finished intensive chemo. If you remember from the beginning when I posted one of my first blogs I explained that Gabriel was diagnosed with a trans located leukemic chromosome, which resulted in Gabriel being on high-risk chemo protocol. This intensive chemo treatment is one year compared to children diagnosed with standard risk of only six months of chemo. Gabriel is completing the final phase, which is an intensive phase of chemo. He has had to undergo this particular phase twice during the year. Gabriel is coping very well in spite of all the he has undergone in 2009. His life is very different than most little boys, but we continue to remind him this is not forever. In addition, there are some medications that cause disruption in his personality, which is hard for his mommy and daddy to watch. He become sad and angers quickly. Once this medication is completed I soon see my sensitive, loving and smart little boy once again. It is difficult to see such changes in your children, but we continue to remind ourselves that this process is what kills the cancer cells. We have one more month left until we begin maintenance. The process for maintenance involves chemo everyday at home and visits to the hospital once a month. This phase will last two years, which is a long time. However, we are only at the hospital once a month and Gabriel's immune system during maintenance will not as compromised. Gabriel will be able to go to school and begin to enjoy life as much as he can. His life right now will always have hospital visits and more concerns for us than other parents would have for their children. We have become accustomed to this "new normal." We cope through God's strength and remembering that this to shall last only for a season and God will be gloried when all is said and done. We are looking forward to what the new year will bring for our family.
Most Important Blessing of 2009-Our Baby Girl
We were overjoyed with the birth of our new baby girl Yasmine Mia on November 1st-her daddy's birthday. She was one week late, which was rather surprising after many nights of trying to figure out whether my false labour was going to turn to real labour. We also took a trip to the hospital at 36 weeks as I was contracting every 5 minutes and my contractions lasting about 48 seconds, but soon found these contractions teetering off. Oh, the frustration! I experienced much of these false contractions for weeks, until I was soon annoyed and took things in to my own hands. I heard of stimulating oxytocin by using a breast pump to get contractions started. I decided I was going to try this measure. It took two pumps and my water broke. The contractions were tough, but I had a great support team to help me through so that I could meet my goal of natural childbirth. It was exactly 3.5 hours later that Yasmine was born. This was an adventure that will always be remembered. We are so excited about Yasmine as she has made 2009 a joyful year to remember, rather than a year of only focusing on our son's diagnosis.
We wish everyone a Merry Christmas and a wonderful New Year in 2010. Thank you once again for checking in to see how we are doing at the Smith household. We look forward to being able to see everyone that we have not seen just prior to Gabriel's diagnosis.
Mike and I have many moments of both happiness, appreciation of our blessings, but also much pain and sadness. This journey is one that is unpredictable. There are moments when you feel that the journey has become routine and we are coping well, but then a slight negative change causes us to have quick sense of hopelessness. I am soon reminded of God's love and protection that He has provided for our family since our journey began on February 11th. There have been many occasions throughout this journey where many of our family members have become ill, and our son never received any of these illnesses that would have caused him to be hospitalized. In particular, I became ill with the swine flu just after having my daughter. I became overly concerned for both my son and new daughter as they are both extremely high risk. The week I just gave birth to our daughter we were all separated as a family. My daughter Simone was with her daddy at his parents, Gabriel was with my parents at our house, and I was by myself with my new daughter. The week for me became a test of faith that I will never forget. I just shared with my husband that for many weeks prior to this difficult week I remember feeling/hearing the Holy Spirit tell me this exact phrase over and over for weeks "get into the word for there will be more to come." I did not want to believe I would have to go through more tests and pain. I ignored this calling and often times found myself too busy with my kids, feeling tired with hospital visits and being pregnant to read my bible and pray consistently. It was that week when I was sitting at the table alone at my parents I realized that this was the event that I was warned about. I was in constant emotional anxiety and pain that I could not focus enough to read my bible. Satan tempted me and caused much fear that week. I remember going to the basement at my parents house to play on the internet to distract myself, and the first thing that pops up on the computer was the two month old baby that died of swine flu. The very illness that both Mike and I feared for our son and new daughter. Satan's ability to stir fear happens in many ways and that week I was subjected to much fear that it prevented me from focusing on what is the truth only found in God's Word. God does not want us to fear. Fear is of Satan and of this world. God has shown us through this journey his protection over Gabriel and now our new daughter. Every time Gabriel's immune system has bottomed out our case manager has told us that she is close to 100% sure that Gabriel will be admitted to hospital with a fever. This is often the pattern they see at the hospital when children's immune system is suppressed. Every time I was told that by our case manager I prayed. Gabriel has never had a fever throughout this entire journey as a result of a low immune system. This occurrence is only a result of God's protection and answering of all our prayers and your prayers for our family. That week it reinforced the importance of gaining strength, trust and peace through constant devotion to reading the Word and prayer. It is when we let aspects of this world become more prominent that we open a hole for Satan to gain access to our mind. Satan infiltrates our mind so quickly with negative thoughts and fears we begin to lose focus on God's promises that are received when we have our salvation through Jesus Christ.
Prayers went out to God for continued protection during that week. God answered our prayers. "Have faith in God. For verily I say unto you, that whosoever shall say unto this mountain, Be thou removed and be thou cast into the sea; and shall not double in his heart, but shall believe that those things which he saith shall come to pass; he shall have whatsoever he saith. Therefore I say unto you, what things soever ye desire, when ye pray, believe that ye receive them, and ye shall have them (Mark 11:22-24)." The only people in our family who did not get sick were the two people we were concerned about the most-Yasmine and Gabriel. Thank you God for your continued protection. Mike also did not get sick as the antibodies were working from the vaccination for him. Thank goodness as Mike and I know God's healing and protection can come in the form of medication. I became sick a day before I had my daughter with a cough and the symptoms increased after I gave birth. I remembering starting to feel ill with a fever and chills after my daughter was born. My weakened immune system during my pregnancy caused me to get this flu while out in the community.
I wish Gabriel was never diagnosed with leukemia, but one day I know Gabriel will be healed and will have a glorious testimony to share. We continue to see God's hands over our family and we thank Him everyday. We also want to thank you all for your continued devotion to praying for our family. My words cannot express how much we appreciate your prayers and words of encouragement.
Update on Treatment for Gabriel
Gabriel is close to being finished intensive chemo. If you remember from the beginning when I posted one of my first blogs I explained that Gabriel was diagnosed with a trans located leukemic chromosome, which resulted in Gabriel being on high-risk chemo protocol. This intensive chemo treatment is one year compared to children diagnosed with standard risk of only six months of chemo. Gabriel is completing the final phase, which is an intensive phase of chemo. He has had to undergo this particular phase twice during the year. Gabriel is coping very well in spite of all the he has undergone in 2009. His life is very different than most little boys, but we continue to remind him this is not forever. In addition, there are some medications that cause disruption in his personality, which is hard for his mommy and daddy to watch. He become sad and angers quickly. Once this medication is completed I soon see my sensitive, loving and smart little boy once again. It is difficult to see such changes in your children, but we continue to remind ourselves that this process is what kills the cancer cells. We have one more month left until we begin maintenance. The process for maintenance involves chemo everyday at home and visits to the hospital once a month. This phase will last two years, which is a long time. However, we are only at the hospital once a month and Gabriel's immune system during maintenance will not as compromised. Gabriel will be able to go to school and begin to enjoy life as much as he can. His life right now will always have hospital visits and more concerns for us than other parents would have for their children. We have become accustomed to this "new normal." We cope through God's strength and remembering that this to shall last only for a season and God will be gloried when all is said and done. We are looking forward to what the new year will bring for our family.
Most Important Blessing of 2009-Our Baby Girl
We were overjoyed with the birth of our new baby girl Yasmine Mia on November 1st-her daddy's birthday. She was one week late, which was rather surprising after many nights of trying to figure out whether my false labour was going to turn to real labour. We also took a trip to the hospital at 36 weeks as I was contracting every 5 minutes and my contractions lasting about 48 seconds, but soon found these contractions teetering off. Oh, the frustration! I experienced much of these false contractions for weeks, until I was soon annoyed and took things in to my own hands. I heard of stimulating oxytocin by using a breast pump to get contractions started. I decided I was going to try this measure. It took two pumps and my water broke. The contractions were tough, but I had a great support team to help me through so that I could meet my goal of natural childbirth. It was exactly 3.5 hours later that Yasmine was born. This was an adventure that will always be remembered. We are so excited about Yasmine as she has made 2009 a joyful year to remember, rather than a year of only focusing on our son's diagnosis.
We wish everyone a Merry Christmas and a wonderful New Year in 2010. Thank you once again for checking in to see how we are doing at the Smith household. We look forward to being able to see everyone that we have not seen just prior to Gabriel's diagnosis.
Tuesday, September 1, 2009
Happy 4th Birthday Gabriel!
Today, September 1, 2009 is very much a contrast from September 1, 2008. Last year we spent celebrating our son's birthday as any "normal" family would celebrate. This year my beautiful and courageous son spent his fourth birthday at the hospital for 12 hours receiving treatment. However, he continued to be our son who is full of laughter and spirit in spite of the day. He encourages so many people who get to know our little boy. His curious questions and his ability to find ways to cope inspire me everyday.
HAPPY BIRTHDAY OUR AMAZING SON GABRIEL!!!!!!
Treatment Phase
During the month of August and September we continue to visit the hospital either weekly or three times a week for chemotherapy. Gabriel is currently on the "Augmented Delayed Intensification" phase of treatment. The first part of this phase involved five various chemo medications through IV, oral and a lumber puncture. The the second half of this phase is more difficult as Gabriel will receive IV and oral medications. In addition, he will receive 12 leg injections back to back. This is the most difficult part of treatment for Gabriel and inevitably for myself. When my baby boy is hurting I am hurting. I have come along very quickly to show strength on the outside even if I don't feel that way during the time my son is in pain. My strength comes from God as I know he continues to protect Gabriel during treatment. However, we all have emotions that dictate our external responses to situations. Appropriate externalization of emotions is important. I, of course, as a social worker believe 100% that externalization of emotions through verbal and physical communication is an important process that both children and adults must do in order to be mentally and physically healthy. As a result, Gabriel and I enjoy discussing our different feelings about the hospital visits after treatment and reading books expressing feelings so that Gabriel knows it is okay to be scared, sad, mad, anxious, frustrated, etc... We often agree that we don't like our visits, but know they are necessary. As I hug my little boy during painful procedures we have repeated the same saying since the onset of diagnosis. We repeat "it will be all done again." Gabriel likes to be reminded that the pain is short and that there is an end. One day we will finally be able to say together "it will be all done...forever." This is the day that God's healing will be revealed. Gabriel is healed today. I have no doubt (Mark 11:22-24) about that! It is doubt and disbelief in our hearts that causes fear and worry. I won't doubt the truth of the Word. God does not lie. I know that our journey involves chemotherapy and have I to trust God's direction over this process. I cannot worry about the side effects or future repercussions because our son is in God's protective hands. We will continue to pray this over him his entire life into old age. I am so thankful to God for bringing us thus far with limited reactions and only one fever.
Thank you to everyone who called to wish Gabriel a happy birthday! I was overcome with tears to all those who wanted to bring a smile to Gabriel's face. We appreciate your amazing support during this time and for being patient with our family if we don't get back to you right away. We also want to thank everyone for being so vigilant at informing us if you or your children are sick and becoming proactive with washing your hands.
Upcoming Months
The next few months will probably we spent at home away from crowds based on the uncertainty about the swine flu and other infections. However, we will not live in a bubble and live in fear. We will take precautions without limiting our family too much. We will have a new little one soon, so our time will be spent getting to know our third blessing from God. This will be a rewarding part of 2009 and looking forward to our new baby. I have almost completed my Christmas shopping in preparation for my busy life with three young and busy children. It was actually lots of fun shopping this time of year. I had not busy line-ups or crowds. I feel very organized. I may continue this for years to come. The other exciting part of our life is that I have started homeschooling Gabriel. I spent all summer researching for the best junior kindergarten curriculum for my son. Gabriel would have started junior kindergarten this year, but based on the intense chemo he is receiving it would have been too difficult. Gabriel is so eager to learn that I wanted to encourage this instead of waiting until next year. He keeps asking me to read the calendar, the clock and wants to read books so badly. I will find him sitting with his sister pretending to know how to read a story to her. It has to be the cutest thing to see your two children sitting together wanting to read a book. I love it! I can't help but smile and feel so blessed when I look at them.
Questions about Swine Flu for the Smith Family
Many people have asked about the swine flu vaccination and what it means for our family. Therefore, I wanted to provide everyone with some information. Gabriel is not able to get the vaccination as it would not do anything for him at this time. I was never a proponent of the flu vaccination based on concerns about repercussions to our bodies with all of the immunizations we have received and do receive. However, when you have a child that was diagnosed with cancer you face a different set of questions. We have become more concerned about Gabriel being around those who are not immunized because our son does not have immunity to fight serious diseases that are control through immunizations. The chemo he has received has depleted his immune system from fighting the diseases he was immunized as a baby and toddler. We have asked what the procedures will be for children diagnosed with cancer and the response from the Oncologists is the following: "Anyone you want your child to be around must have received the flu shot and swine flu shot in order to protect these children." I know there are many people out there who do not believe in receiving such vaccinations and I can appreciate this at a different level. My goal is to protect my son and other children, which means I have to throw out my past concerns and realize that there was a whole other aspect that I missed prior to Gabriel's diagnosis. This missed aspect was the concern for families who have immunosuppresant children. There are many "behind the scene" decisions, routines and procedures that occur for families with children receiving chemo that often go unrecognized. For example, my daughter was just recently at the stage of receiving her 18 month needles, which included a chicken pox vaccination. Gabriel was given this vaccination and now has no immunity to chicken pox. Chicken pox is life threatening to all kids with Leukemia on treatment. If we were not going through this with Gabriel we may have decided not to have Simone vaccinated for chicken pox and do what so many generations have done by receiving immunity through exposure. Sadly, we had other details to consider that most "normal" families tend not to consider. We immunized Simone to protect Gabriel. I never thought I would ever have to immunize my one child to protect another. This was the hardest decision for me because it concerned two of my children, not just one. It stirs the debate "to immunize or not to immunize" that is presently on the rise. I have come to realize during our journey that society as a whole must be a part of this debate when considering whether you immunize your own children.
We do hope to see our family and friends over the next few months. We wish you all good wishes and health.
Thank you for spending time reading my blog. I hope I was able to update you all without overwhelming you. I always have so much to say, and try to do this with limited words when I can. I hope you all had a wonderful summer and looking forward to the new school year. Remember to see the blessings in your life everyday and to always be positive. Glorify God always in all that you do!
The Smith Family
(Mike, Tina, Gabriel, Simone and soon baby number three)
HAPPY BIRTHDAY OUR AMAZING SON GABRIEL!!!!!!
Treatment Phase
During the month of August and September we continue to visit the hospital either weekly or three times a week for chemotherapy. Gabriel is currently on the "Augmented Delayed Intensification" phase of treatment. The first part of this phase involved five various chemo medications through IV, oral and a lumber puncture. The the second half of this phase is more difficult as Gabriel will receive IV and oral medications. In addition, he will receive 12 leg injections back to back. This is the most difficult part of treatment for Gabriel and inevitably for myself. When my baby boy is hurting I am hurting. I have come along very quickly to show strength on the outside even if I don't feel that way during the time my son is in pain. My strength comes from God as I know he continues to protect Gabriel during treatment. However, we all have emotions that dictate our external responses to situations. Appropriate externalization of emotions is important. I, of course, as a social worker believe 100% that externalization of emotions through verbal and physical communication is an important process that both children and adults must do in order to be mentally and physically healthy. As a result, Gabriel and I enjoy discussing our different feelings about the hospital visits after treatment and reading books expressing feelings so that Gabriel knows it is okay to be scared, sad, mad, anxious, frustrated, etc... We often agree that we don't like our visits, but know they are necessary. As I hug my little boy during painful procedures we have repeated the same saying since the onset of diagnosis. We repeat "it will be all done again." Gabriel likes to be reminded that the pain is short and that there is an end. One day we will finally be able to say together "it will be all done...forever." This is the day that God's healing will be revealed. Gabriel is healed today. I have no doubt (Mark 11:22-24) about that! It is doubt and disbelief in our hearts that causes fear and worry. I won't doubt the truth of the Word. God does not lie. I know that our journey involves chemotherapy and have I to trust God's direction over this process. I cannot worry about the side effects or future repercussions because our son is in God's protective hands. We will continue to pray this over him his entire life into old age. I am so thankful to God for bringing us thus far with limited reactions and only one fever.
Thank you to everyone who called to wish Gabriel a happy birthday! I was overcome with tears to all those who wanted to bring a smile to Gabriel's face. We appreciate your amazing support during this time and for being patient with our family if we don't get back to you right away. We also want to thank everyone for being so vigilant at informing us if you or your children are sick and becoming proactive with washing your hands.
Upcoming Months
The next few months will probably we spent at home away from crowds based on the uncertainty about the swine flu and other infections. However, we will not live in a bubble and live in fear. We will take precautions without limiting our family too much. We will have a new little one soon, so our time will be spent getting to know our third blessing from God. This will be a rewarding part of 2009 and looking forward to our new baby. I have almost completed my Christmas shopping in preparation for my busy life with three young and busy children. It was actually lots of fun shopping this time of year. I had not busy line-ups or crowds. I feel very organized. I may continue this for years to come. The other exciting part of our life is that I have started homeschooling Gabriel. I spent all summer researching for the best junior kindergarten curriculum for my son. Gabriel would have started junior kindergarten this year, but based on the intense chemo he is receiving it would have been too difficult. Gabriel is so eager to learn that I wanted to encourage this instead of waiting until next year. He keeps asking me to read the calendar, the clock and wants to read books so badly. I will find him sitting with his sister pretending to know how to read a story to her. It has to be the cutest thing to see your two children sitting together wanting to read a book. I love it! I can't help but smile and feel so blessed when I look at them.
Questions about Swine Flu for the Smith Family
Many people have asked about the swine flu vaccination and what it means for our family. Therefore, I wanted to provide everyone with some information. Gabriel is not able to get the vaccination as it would not do anything for him at this time. I was never a proponent of the flu vaccination based on concerns about repercussions to our bodies with all of the immunizations we have received and do receive. However, when you have a child that was diagnosed with cancer you face a different set of questions. We have become more concerned about Gabriel being around those who are not immunized because our son does not have immunity to fight serious diseases that are control through immunizations. The chemo he has received has depleted his immune system from fighting the diseases he was immunized as a baby and toddler. We have asked what the procedures will be for children diagnosed with cancer and the response from the Oncologists is the following: "Anyone you want your child to be around must have received the flu shot and swine flu shot in order to protect these children." I know there are many people out there who do not believe in receiving such vaccinations and I can appreciate this at a different level. My goal is to protect my son and other children, which means I have to throw out my past concerns and realize that there was a whole other aspect that I missed prior to Gabriel's diagnosis. This missed aspect was the concern for families who have immunosuppresant children. There are many "behind the scene" decisions, routines and procedures that occur for families with children receiving chemo that often go unrecognized. For example, my daughter was just recently at the stage of receiving her 18 month needles, which included a chicken pox vaccination. Gabriel was given this vaccination and now has no immunity to chicken pox. Chicken pox is life threatening to all kids with Leukemia on treatment. If we were not going through this with Gabriel we may have decided not to have Simone vaccinated for chicken pox and do what so many generations have done by receiving immunity through exposure. Sadly, we had other details to consider that most "normal" families tend not to consider. We immunized Simone to protect Gabriel. I never thought I would ever have to immunize my one child to protect another. This was the hardest decision for me because it concerned two of my children, not just one. It stirs the debate "to immunize or not to immunize" that is presently on the rise. I have come to realize during our journey that society as a whole must be a part of this debate when considering whether you immunize your own children.
We do hope to see our family and friends over the next few months. We wish you all good wishes and health.
Thank you for spending time reading my blog. I hope I was able to update you all without overwhelming you. I always have so much to say, and try to do this with limited words when I can. I hope you all had a wonderful summer and looking forward to the new school year. Remember to see the blessings in your life everyday and to always be positive. Glorify God always in all that you do!
The Smith Family
(Mike, Tina, Gabriel, Simone and soon baby number three)
Wednesday, July 1, 2009
Our Journey Update and Fantastic Blessings
I have realized that I have not posted a blog in over one month, and I know many people wonder how we are doing. I continue to lean on God's strength at all times. I continue to have faith in God's word concerning healing for my son. "And the prayer of faith shall save the sick, and the Lord shall raise him up (James 5:15). By Jesus stripes my son is healed and that is what I am reminded each day that I feel my faith being tested. I know that God will use this situation to glorify Him and I have to trust that each day I am at the hospital.
Chemotherapy Procedures
Gabriel is presently on interim maintenance, but with his previous reaction our commitment at the hospital has increased. We are at the hospital three days a week for a period of two weeks at a time. We get a little more than a week break, which means we are only at the hospital once during that time. However, this will change as we enter a new chemo phase for Gabriel and will last for two months. The next phase of treatment will be quite intensive with many chemo medications both orally, intrathecal and iv. The preparation for this phase included an ultrasound and baseline reading of his heart as one particular drugs poses a risk to his heart (rare risk). It is times like this that our fears can surface, but I know that fear is not of the Lord and only used by Satan to defeat our faith in God's word. We appreciate your continued prayers.
Many people ask how Gabriel is doing and I am thankful that he is coping well. His age protects him from fully understanding the severity of his disease, but I am glad for this. I cannot imagine Gabriel carrying the same mental health struggles that adults have to carry when confronted with being diagnosed with cancer. Gabriel has moments where he is angry before and after painful procedures, which is to be expected. Overall, he plays like a little boy should, asks questions like a little boy should and loves to be with his friends and family. He is a energetic, high-spirited, incredible little boy whom I am so proud of. He inspires me. I love hearing him in the back of the car singing his Sunday School songs. He misses so much attending Sunday school and asks when he can go back. We always tell him one day things will be different and he can go back.
The process tends to be more difficult for parents with young children coping through chemo. I have to endure holding my child when he is in pain and feeling so helpless that I can't take it away. Mike and I have to endure the thoughts that creep in each day that create fears of the future. I know that this journey has reinforced for me that if I don't seek God consistently through this journey and forever I can become mentally fractured and allow Satan's control to work in our family. I am thankful that God is in control and that I feel his presence each day as I certainly could not do this journey without him leading the way.
Relay for Life
I want to send a thank you to everyone for your support for our team in the Relay for Life in Tillsonburg. We had an incredible time and was empowering for Mike and I to be part of this great cause. As parents we often feel helpless. The Relay for Life was a great opportunity for us to do something proactive that allowed us to feel a sense of control by contributing to wonderful cause that seeks to change similar circumstances for families. Thank you so much for you help.
I want to thank my team for your commitment and raising pledges. We could not have done this without you. Thank you to everyone who pledged our team and/or the individuals on our team. You have contributed to a worthy cause and many families will come to know the benefits of this cause.
Smith Family Fun
During this phase we had many opportunities to enjoy various outings as a result of Gabriel's neutrophils being high. We have spent time camping at Port Burwell Provincial Park, visiting Point Pelee on two occasions for a day trip, trip to Niagara falls for three days, hikes, picnics in the park, visiting my parents in Wiarton, and spending time Mike's siblings from Alberta and seeing our family and friends. It has been an enjoyable time for us these past two months and has assisted with distracting us from the realities of our family life at this time.
Simone is growing so fast. She is our fearless, comedic little girl who brings us all to laughter everyday. She is trying to run more often and is saying many new words each day. I see a confident and assertive little girl who knows what she likes and dislikes and communicates this very well. We are so proud of her. She shows much concern for her brother and loves to give him hugs and kisses. Gabriel and Simone are inseparable. Gabriel does not like to go to the hospital without her. I must say that my favorite time with my children is our cuddle time. Both of my children love cuddle time with mommy. I am trying to figure out how to fit my three children on my lap, and will be determined to find a way. I am so thankful for each of my children and when I look at them I see God's amazing power.
Our new baby is ready to come on October 28th, and we are getting excited about our new addition. We were recently told in an ultrasound that they are 98% sure that we are having another girl. Exciting news for our family that will soon become five. The name search has begun, but a difficult task for Mike and I. We tend to choose names that are not on the top 100 names of the past few years. I have only made it through three letters of the alphabet and not much agreeable success. Stay tuned upon the delivery of our baby for the chosen name. :)
Thank you once again for choosing to spend your time with us by reading my blog. We appreciate this commitment as I know that life can be busy for everyone.
God Bless you all!
Chemotherapy Procedures
Gabriel is presently on interim maintenance, but with his previous reaction our commitment at the hospital has increased. We are at the hospital three days a week for a period of two weeks at a time. We get a little more than a week break, which means we are only at the hospital once during that time. However, this will change as we enter a new chemo phase for Gabriel and will last for two months. The next phase of treatment will be quite intensive with many chemo medications both orally, intrathecal and iv. The preparation for this phase included an ultrasound and baseline reading of his heart as one particular drugs poses a risk to his heart (rare risk). It is times like this that our fears can surface, but I know that fear is not of the Lord and only used by Satan to defeat our faith in God's word. We appreciate your continued prayers.
Many people ask how Gabriel is doing and I am thankful that he is coping well. His age protects him from fully understanding the severity of his disease, but I am glad for this. I cannot imagine Gabriel carrying the same mental health struggles that adults have to carry when confronted with being diagnosed with cancer. Gabriel has moments where he is angry before and after painful procedures, which is to be expected. Overall, he plays like a little boy should, asks questions like a little boy should and loves to be with his friends and family. He is a energetic, high-spirited, incredible little boy whom I am so proud of. He inspires me. I love hearing him in the back of the car singing his Sunday School songs. He misses so much attending Sunday school and asks when he can go back. We always tell him one day things will be different and he can go back.
The process tends to be more difficult for parents with young children coping through chemo. I have to endure holding my child when he is in pain and feeling so helpless that I can't take it away. Mike and I have to endure the thoughts that creep in each day that create fears of the future. I know that this journey has reinforced for me that if I don't seek God consistently through this journey and forever I can become mentally fractured and allow Satan's control to work in our family. I am thankful that God is in control and that I feel his presence each day as I certainly could not do this journey without him leading the way.
Relay for Life
I want to send a thank you to everyone for your support for our team in the Relay for Life in Tillsonburg. We had an incredible time and was empowering for Mike and I to be part of this great cause. As parents we often feel helpless. The Relay for Life was a great opportunity for us to do something proactive that allowed us to feel a sense of control by contributing to wonderful cause that seeks to change similar circumstances for families. Thank you so much for you help.
I want to thank my team for your commitment and raising pledges. We could not have done this without you. Thank you to everyone who pledged our team and/or the individuals on our team. You have contributed to a worthy cause and many families will come to know the benefits of this cause.
Smith Family Fun
During this phase we had many opportunities to enjoy various outings as a result of Gabriel's neutrophils being high. We have spent time camping at Port Burwell Provincial Park, visiting Point Pelee on two occasions for a day trip, trip to Niagara falls for three days, hikes, picnics in the park, visiting my parents in Wiarton, and spending time Mike's siblings from Alberta and seeing our family and friends. It has been an enjoyable time for us these past two months and has assisted with distracting us from the realities of our family life at this time.
Simone is growing so fast. She is our fearless, comedic little girl who brings us all to laughter everyday. She is trying to run more often and is saying many new words each day. I see a confident and assertive little girl who knows what she likes and dislikes and communicates this very well. We are so proud of her. She shows much concern for her brother and loves to give him hugs and kisses. Gabriel and Simone are inseparable. Gabriel does not like to go to the hospital without her. I must say that my favorite time with my children is our cuddle time. Both of my children love cuddle time with mommy. I am trying to figure out how to fit my three children on my lap, and will be determined to find a way. I am so thankful for each of my children and when I look at them I see God's amazing power.
Our new baby is ready to come on October 28th, and we are getting excited about our new addition. We were recently told in an ultrasound that they are 98% sure that we are having another girl. Exciting news for our family that will soon become five. The name search has begun, but a difficult task for Mike and I. We tend to choose names that are not on the top 100 names of the past few years. I have only made it through three letters of the alphabet and not much agreeable success. Stay tuned upon the delivery of our baby for the chosen name. :)
Thank you once again for choosing to spend your time with us by reading my blog. We appreciate this commitment as I know that life can be busy for everyone.
God Bless you all!
Saturday, May 16, 2009
Difficult Times
I have wanted to post a blog earlier, but our journey has hit a few bumps in the road. It has been a tiresome two weeks for us, but we have survived yet another. I am thankful that Gabriel is young and cannot understand the dimensions of cancer. However, as an adult and his mother I know too much about this disease that causes us more pain than our own child. He is a little boy with high spirits, lots of energy and so much love. Cancer is too complex for his mind to comprehend and we are glad. You would not even know that battle that goes on inside his little body when you look at him. It is still often difficult for Mike and I as we speak to doctors and visit the hospital each week. We wish we had the ability to be like a child where no worries intrude our thoughts. My human side always has a way to inflict pain, misery and worry. I realize that the more this occurs I have not spent enough time in prayer and reading my scriptures. I know Satan is always ready to insert a negative thought in hopes to defeat my faith.
Our journey these past two weeks has involved admittance as an inpatient twice within two weeks. Each inpatient stay lasted for 3-4 days.
The Discovery
The first inpatient admittance occurred as a result of an anaphylactic reaction to a chemo medicine. Gabriel's reaction occurred 4 hours after his injection, which shocked most of the outpatient staff. I was resting inside after a long day at the hospital for a routine day of chemo. Mike took our children outside to play. I went to visit them out the deck and announce to Mike that their bedtime was approaching. Gabriel came walking up our back steps and I caught out of my peripheral welts on his head. My stomach felt sick at this time as I feared what this meant. However, I did not want to overreact. As Gabriel was coming back to see me I asked Mike immediately if he got hit in the head. Gabriel did not get hurt. As Gabriel neared I realized that they were not typical welts, but a reaction. I concluded further when I noticed his eyes were bloodshot. I quickly grabbed him and checked his belly for spots. Gabriel had the beginnings stages of hives. I quickly yelled for Mike that we have to go now. Gabriel was given his required dose of Benadryl to decrease his reaction until we were in Emerg. The scariest part for Mike and I was when Gabriel spoke his voice began to sound hoarse, which meant his throat was beginning to swell. We were thankful that the Benadryl took affect quickly and he responded well to this medicine. We were immediately admitted to hospital as inpatients so the team of doctors could monitor him for further response to this chemo medicine. This was our first experience in the ward with four other families. This stay meant limited sleep as nurses, heart monitors and much more interrupted our sleep. We were discharged days later and did not assume we would be back in hospital only one week later. We are thankful for the immediate response by the team of doctors and nurses.
Second Admittance
The second inpatient stay within one week resulted from Gabriel becoming febrile. A common routine is to check Gabriel for a temperature prior to putting him down for the night. He was fine at bedtime. In addition, I always check on my children just prior to going to sleep myself and throughout the night when I wake for a bathroom break or just to check on them. It was about 1 a.m in the morning and it was during routine check that I felt Gabriel's forehead with my cheek. I discovered he felt warm, but needed to check his temperature accurately. It read 37.5, but needed to wait one hour to read again to be sure. I woke Mike to tell him about Gabriel feeling warm and that we should check again in one hour. We set our alarm. When the alarm went off, Mike went to check and came back reporting a temperature of 37.6. This temperature for most children is fine, but for Gabriel it is an alert that we may have to go to emergency. Mike was uncertain about whether to trust this temperature, so I came to check. At that time, our thermometer was bouncing from 37.6 to 38.3, which is a huge difference for kids with Leukemia. We immediately called the Pediatric Oncologist on-call that evening. The immediate decision was to proceed to the emergency department early in the morning, which of course was now Thursday. I made the most difficult decision in that moment for any mom. The hardest part for me is to be the best mom to all of my children, in spite of the circumstances that I have been confronted with. It would be easy to give lots of attention to Gabriel for obvious reasons, but our journey will last many years and I cannot imagine missing out on my other children's life. I needed to stay with Simone as I get quite upset every time I leave her behind. It would not be fair to her if she was left behind by her parents every time we left for the hospital. I chose to not work full-time because I want to raise my children, not for someone else to do. I decided that Gabriel would of course be fine with just his dad, and that sometimes he would need to have only his dad and not me. Mike is a great father and I felt totally confident in Mike's ability to help Gabriel. I did not realize that as the night progressed how difficult this decision would become. It was the worse evening for me throughout all of this treatment.
I stayed home for Simone, not for myself as I did not expect to get any sleep after they left. Once at the hospital, Gabriel called me crying on the phone every 15 minutes. The worse feeling in my life was that I could not hug my own child while he was scared and crying. He kept repeating over and over "mommy, please come." I tried to talk to him, but he is only 3.5 years old and all he needed was me to give him hugs and tell him everything was going to be okay. Over the next two hours the calls got worse and worse as they began to take blood from his arm and his port. I try not to remember these calls, but they will haunt me for so long as I remember the pain in his voice and was not there to hold him. I know I stayed with my daughter for the right reasons, but at 5 a.m. I made the decision to briefly wake her to get read for our leave for the hospital. Simone quickly fell back to sleep and I was glad to be on the way to the hospital. Simone is such an amazing child that nothing seems to cause her any difficulties. Her disruption in sleep did not damper her spirits, but was soon off to sleep for the car ride to the hospital. At the hospital, she was thrilled to looked at the pictures of the animals on the wall and to lay beside her brother to watch cartoons, crawl on the bed or just chat in her own words. Gabriel was so happy to see both of us. I was happy to have not waited until our agreed time to leave. I know God has blessed us with amazing children, and our third child will be such a continued blessing that will complete our family. We were at the hospital until Saturday afternoon, which we were glad to be home. We were able to stay in a private room at the hospital as Gabriel was neutropenic and could not be around other people. He has been fighting a cold and cough at home. It was not so bad when his immune system was high, but his neutrophils began to plummet. As a result, his body was not capable of fighting this infection on its own. We are thankful for the hospitals stringent protocol for children with cancer, even though it is a difficult place to stay. We see so many young babies, children and teenagers fighting many diseases, which can debilitate your mind if you allow yourself to ponder such atrocities. I let sadness impede my thoughts for a few hours when I became tired of seeing a young baby continuously being left by himself. This baby does not have anyone staying with him and does not even get frequent visits from family or friends. I was told the parents visit infrequently. I asked if I could visit with him and the nurses indicated "of course." I was overtaken with sadness, and did not know what to do. I prayed for guidance. It seems so unfair for a child to be left with the continued change of nurses trying to complete their rounds. A child receives security through his or her attachment through parents or permanent caregiver, and this child appears to not have attachment figures, especially during a difficult battle with a disease. PLEASE PRAY FOR DANIEL.
We are back home and looking forward to some earned family time together. We are not sure what this will entail, but we are happy to be together outside of hospital grounds. Please continue to pray for strength, perseverance and healing. We continue to thank God for the strength he provides as we could be dealing with this journey very differently.
Future Changes
As a result of Gabriel's reaction to his chemo medicine we are now expected to be visiting the hospital more often. Gabriel has to receive another form of chemo, but this involves three needles a week over a two week period each month. I am thankful that the outpatient clinic (PMDU) in London as the staff is so gracious and helpful with both my children. The staff make is so easy for parents to bring their other children as I could not leave Simone behind this often.
Thank you for checking in on how we are doing!
Our journey these past two weeks has involved admittance as an inpatient twice within two weeks. Each inpatient stay lasted for 3-4 days.
The Discovery
The first inpatient admittance occurred as a result of an anaphylactic reaction to a chemo medicine. Gabriel's reaction occurred 4 hours after his injection, which shocked most of the outpatient staff. I was resting inside after a long day at the hospital for a routine day of chemo. Mike took our children outside to play. I went to visit them out the deck and announce to Mike that their bedtime was approaching. Gabriel came walking up our back steps and I caught out of my peripheral welts on his head. My stomach felt sick at this time as I feared what this meant. However, I did not want to overreact. As Gabriel was coming back to see me I asked Mike immediately if he got hit in the head. Gabriel did not get hurt. As Gabriel neared I realized that they were not typical welts, but a reaction. I concluded further when I noticed his eyes were bloodshot. I quickly grabbed him and checked his belly for spots. Gabriel had the beginnings stages of hives. I quickly yelled for Mike that we have to go now. Gabriel was given his required dose of Benadryl to decrease his reaction until we were in Emerg. The scariest part for Mike and I was when Gabriel spoke his voice began to sound hoarse, which meant his throat was beginning to swell. We were thankful that the Benadryl took affect quickly and he responded well to this medicine. We were immediately admitted to hospital as inpatients so the team of doctors could monitor him for further response to this chemo medicine. This was our first experience in the ward with four other families. This stay meant limited sleep as nurses, heart monitors and much more interrupted our sleep. We were discharged days later and did not assume we would be back in hospital only one week later. We are thankful for the immediate response by the team of doctors and nurses.
Second Admittance
The second inpatient stay within one week resulted from Gabriel becoming febrile. A common routine is to check Gabriel for a temperature prior to putting him down for the night. He was fine at bedtime. In addition, I always check on my children just prior to going to sleep myself and throughout the night when I wake for a bathroom break or just to check on them. It was about 1 a.m in the morning and it was during routine check that I felt Gabriel's forehead with my cheek. I discovered he felt warm, but needed to check his temperature accurately. It read 37.5, but needed to wait one hour to read again to be sure. I woke Mike to tell him about Gabriel feeling warm and that we should check again in one hour. We set our alarm. When the alarm went off, Mike went to check and came back reporting a temperature of 37.6. This temperature for most children is fine, but for Gabriel it is an alert that we may have to go to emergency. Mike was uncertain about whether to trust this temperature, so I came to check. At that time, our thermometer was bouncing from 37.6 to 38.3, which is a huge difference for kids with Leukemia. We immediately called the Pediatric Oncologist on-call that evening. The immediate decision was to proceed to the emergency department early in the morning, which of course was now Thursday. I made the most difficult decision in that moment for any mom. The hardest part for me is to be the best mom to all of my children, in spite of the circumstances that I have been confronted with. It would be easy to give lots of attention to Gabriel for obvious reasons, but our journey will last many years and I cannot imagine missing out on my other children's life. I needed to stay with Simone as I get quite upset every time I leave her behind. It would not be fair to her if she was left behind by her parents every time we left for the hospital. I chose to not work full-time because I want to raise my children, not for someone else to do. I decided that Gabriel would of course be fine with just his dad, and that sometimes he would need to have only his dad and not me. Mike is a great father and I felt totally confident in Mike's ability to help Gabriel. I did not realize that as the night progressed how difficult this decision would become. It was the worse evening for me throughout all of this treatment.
I stayed home for Simone, not for myself as I did not expect to get any sleep after they left. Once at the hospital, Gabriel called me crying on the phone every 15 minutes. The worse feeling in my life was that I could not hug my own child while he was scared and crying. He kept repeating over and over "mommy, please come." I tried to talk to him, but he is only 3.5 years old and all he needed was me to give him hugs and tell him everything was going to be okay. Over the next two hours the calls got worse and worse as they began to take blood from his arm and his port. I try not to remember these calls, but they will haunt me for so long as I remember the pain in his voice and was not there to hold him. I know I stayed with my daughter for the right reasons, but at 5 a.m. I made the decision to briefly wake her to get read for our leave for the hospital. Simone quickly fell back to sleep and I was glad to be on the way to the hospital. Simone is such an amazing child that nothing seems to cause her any difficulties. Her disruption in sleep did not damper her spirits, but was soon off to sleep for the car ride to the hospital. At the hospital, she was thrilled to looked at the pictures of the animals on the wall and to lay beside her brother to watch cartoons, crawl on the bed or just chat in her own words. Gabriel was so happy to see both of us. I was happy to have not waited until our agreed time to leave. I know God has blessed us with amazing children, and our third child will be such a continued blessing that will complete our family. We were at the hospital until Saturday afternoon, which we were glad to be home. We were able to stay in a private room at the hospital as Gabriel was neutropenic and could not be around other people. He has been fighting a cold and cough at home. It was not so bad when his immune system was high, but his neutrophils began to plummet. As a result, his body was not capable of fighting this infection on its own. We are thankful for the hospitals stringent protocol for children with cancer, even though it is a difficult place to stay. We see so many young babies, children and teenagers fighting many diseases, which can debilitate your mind if you allow yourself to ponder such atrocities. I let sadness impede my thoughts for a few hours when I became tired of seeing a young baby continuously being left by himself. This baby does not have anyone staying with him and does not even get frequent visits from family or friends. I was told the parents visit infrequently. I asked if I could visit with him and the nurses indicated "of course." I was overtaken with sadness, and did not know what to do. I prayed for guidance. It seems so unfair for a child to be left with the continued change of nurses trying to complete their rounds. A child receives security through his or her attachment through parents or permanent caregiver, and this child appears to not have attachment figures, especially during a difficult battle with a disease. PLEASE PRAY FOR DANIEL.
We are back home and looking forward to some earned family time together. We are not sure what this will entail, but we are happy to be together outside of hospital grounds. Please continue to pray for strength, perseverance and healing. We continue to thank God for the strength he provides as we could be dealing with this journey very differently.
Future Changes
As a result of Gabriel's reaction to his chemo medicine we are now expected to be visiting the hospital more often. Gabriel has to receive another form of chemo, but this involves three needles a week over a two week period each month. I am thankful that the outpatient clinic (PMDU) in London as the staff is so gracious and helpful with both my children. The staff make is so easy for parents to bring their other children as I could not leave Simone behind this often.
Thank you for checking in on how we are doing!
Thursday, April 30, 2009
Humbled by your Gift
I cannot express in words how humbled and grateful I am for everyone rallying together to create a beautiful quilt. I want to express my heartfelt thanks to my lovely and great friend Melissa for a beautiful and thoughtful idea and the work to organize and complete this quilt. You are a wonderful person whom I am so thankful I met 3.5 years ago.
I look at this quilt everyday and it brings me to tears knowing how wonderful you all are to have devoted your time to do this for Gabriel. When Gabriel is older, he will truly appreciate the love and support you all have provided to our family. Thank you so much. I love you all!
I have posted the final product for all to view. Please check this beautiful quilt out! Thank you once again!
I look at this quilt everyday and it brings me to tears knowing how wonderful you all are to have devoted your time to do this for Gabriel. When Gabriel is older, he will truly appreciate the love and support you all have provided to our family. Thank you so much. I love you all!
I have posted the final product for all to view. Please check this beautiful quilt out! Thank you once again!
Monday, April 27, 2009
In Honour of Gabriel's Journey-Sponsor our Team for the Tillsonburg Relay for Life
Hi Everyone,
It is very hard to watch your own child have good days, bad days and very bad days with his fight with cancer. This journey has made me feel as though I have don't have a lot of control. As a result, I wanted to find a way for me to feel as though I was helping towards the fight for a cure for cancer. Therefore, the best way that I could do this was to contribute a team for the Tillsonburg Relay for Life. I want to know that I am helping other moms and dad's who have children who are traveling a similar journey. I am hoping that all those who log on to my blog would pledge a participant or our team.
You can do this online at our own personal Relay for Life website by selecting pledge a participant or pledge a team at the following link: http://convio.cancer.ca/site/TR?fr_id=3393&pg=entry
Thanks for supporting a wonderful cause.
It is very hard to watch your own child have good days, bad days and very bad days with his fight with cancer. This journey has made me feel as though I have don't have a lot of control. As a result, I wanted to find a way for me to feel as though I was helping towards the fight for a cure for cancer. Therefore, the best way that I could do this was to contribute a team for the Tillsonburg Relay for Life. I want to know that I am helping other moms and dad's who have children who are traveling a similar journey. I am hoping that all those who log on to my blog would pledge a participant or our team.
You can do this online at our own personal Relay for Life website by selecting pledge a participant or pledge a team at the following link: http://convio.cancer.ca/site/TR?fr_id=3393&pg=entry
Thanks for supporting a wonderful cause.
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