I Keep Trying to Look Up

I never thought that as 2012 approaches that I would have to re-experience the pain and fear that coincides with this journey.  This past year we felt blessed as Gabriel was beginning to live the “normal” life of a little boy.  He was playing soccer, swimming, playing with friends, and school. He was full of life.  He smiled.  He played. He was living.  Now…  life feels unfair, as my son’s life is ripped apart.  He no longer gets to be a little boy.  He has to understand this complex journey with a mind of a child, but with the strength that most adults cannot conceive.  I cannot conceive this strength and bravery that one must have to conquer cancer.  How do I help my son be happy and feel normal during this adversity? How do I be a mom to all three of my children providing a balanced amount of time to each child so they all can grow with greatness, love, and a beautiful spirit during a journey with cancer?

I am reminded that my answers can only come from the one above-our Father in Heaven.  My greatest strength has been my faith in God.  This journey tests my faith everyday, and some days I fail.  I am reminded during this time when fear and worry overtake me that I must trust the one whom carves my footpath.  Romans 8:6 states, “For to set the mind on the flesh is death, but to set the mind on the Spirit is life and peace.” I need peace at this time so that I can be a mom that encourages, listens, and teaches what is honorable and glorifies our Heavenly Father.  I want to dream great things for my children.  This life causes one to live in the moment.  I don’t want to always live in the moment.  I want to dream big dreams again for my children. My dreams sometimes feel like nightmares. 

I need to keep looking up.  It is up that reminds me there is life when we pray, read the word, and look for the blessings amongst the pain.  I believe there are blessings.  I just feel tired of this pain.  I want this pain to end.  I want to know that I will be able to hold my son in my arms until I go to be with our Heavenly Father.  I don’t want to fear the reverse.  I need to have Faith amongst the unknown.  The greatest tool that overcomes all is faith in God. 

Dear Jesus,

I pray for the strength that only comes from you.  I pray that I exemplify you and your humble spirit.  I pray that I can hold my son close for years to come until I am old and come to live with you.  I pray that the doctors are wrong when they tell me that he will never have children of his own.  In spite of all the pain that goes with this journey I would never change the gift that you have given me in Gabriel, Simone, and Yasmine.  I pray, Dear Jesus, that Gabriel is given this same gift of the greatest gift in life of all-children.  I pray that he is given freedom to live his life to the fullest without long-term harm to his body, mind or spirit.  I pray that this journey will be used to glorify you and bring people to know you.  I pray for healing.

                                                                                    Amen (Let is be So).

First Week of Relapse

This journey has been a difficult time as I never fathomed I would hear the words “relapse.”  However, I have and I need to regain my composure to begin treatment in a different and renewed way than previous years.  I am not sure what this will look like, but I know it has to be different.

A summary thus far during our first week of relapse Gabriel has undergone two LP’s to decrease the leukemia blasts in his central nervous system (CNS).  This treatment has worked, and has reduced the blasts.  He also received a second round of a triple dose of chemotherapy where three different types of chemotherapy were injected into his CNS.  He had his bone marrow tested to determine whether the cancer spread.  It has not, which is great news.  However, our treatment course is based upon two possible paths because he does have cancer in his CNS.  One path is chemotherapy for two years based upon a German protocol that is new to our Outpatient clinic, but known for better results for a CNS relapse so close to completion.  The second path is for a bone marrow transplant if Simone and Yasmine match Gabriel.  The treatment path will be based upon Mike and I deciding upon the best for our son, which will take much research, questions to the transplant team and lots of prayer.  We are advised that bone marrow transplant would be a more curable prognosis, but there is much risk.  Please pray for Mike and I to have clarity, wisdom and to make the right decision.

I will continue to post so that I can share our journey with you.  I do appreciate that you all take some time to read my posts.  It helps me, and I hope it helps you understand our journey too.

Waiting...

I wait, and wait, and wait.  This experience tends to be the very essence of this journey. Waiting for the blood results and bone marrow from the first test that identified leukemia, waiting to find out whether Gabriel was standard risk or high risk to discover he was considered high risk based upon cyber genetics testing, waiting to know whether he is in remission, waiting to know whether chemo is working, waiting for June 2^nd, 2012 for the final day of treatment, waiting for five years to know that he is cured….but, now I wait…again… I wait in fear, I wait in sadness, I wait in anger, I wait in frustration, I wait to know whether cancer has spread to his bone marrow, I wait wondering if my girls are a match in case a transplant will occur, I wait as I also have to endure my girls being tested, I wait for FEAR of that word that is apart of this journey with cancer. I don’t want to fear losing my son.  I did not carry Gabriel for nine months to give birth to him to see him in pain, to be reduced to what cancer does to a person, to not be a child living and enjoying life.  My child suffers and I suffer having to watch without being able to carry him through this pain.  When will you return Jesus so that you can take all this pain away?  I wait…in pain, sadness, frustration, but I wait knowing this is not my home.  However, it does not change the fact that this wait is hard when you have a child that suffers.  I want to be reminded of your blessings upon my life, but I am filled with sadness and loneliness, as you feel so distant.   So, I continue to wait for answers from doctors and I will continue to wait upon you Lord…

I never intended for my post to be one of such difficulty.  I had intended writing a post just after I uploaded an article from David.  My blog was going to be one where I rejoiced in all the blessings that have been a part of our life over this past year.  It was going to be a blog of great happiness from our Make a Wish trip, Camp Trillium and our 2^nd annual Christmas cabin trip.  I felt very thankful to our Heavenly Father for blessing us.   However, all has completely changed in literally a matter of minutes.  I am thankful for this past year, but as I sit here writing this post it feels like a distant memory of long ago.  We went to Gabriel’s scheduled three month LP procedure that we have done with Gabriel many times before, and assumed all would be fine. 

We received a call on Wednesday from our Oncologist, which is rare.  Your gut sinks as you know when you receive a call from the Oncologist something is not right.  I was in session with a client and my husband banged on my door.  I knew instantly something was wrong.  I went in the hallway away from my office. My husband stated in tears “Gabriel has cancer in his central nervous system.”  I was instantly in shock.  All I could say was “what, are you kidding.”  I was in such a state of shock and disbelief that for a moment my mind wanted to believe this was a bad joke.  I quickly realized that I had to end my session with my client, as we needed to see our Oncologist. 

 We were advised that his treatment protocol could not be determined at this time until a bone marrow test is completed.  There are two options at this time for my son.  The first option if the cancer has not spread to the bone marrow is back on intensive chemo and radiation to his head.  The second option would be a bone marrow transplant if the cancer has been found in his marrow.  I don’t like either option.  When you are given options in best, better and ok, even though you don’t want any.  We want the best, which is where the cancer has not spread to his bone marrow.  Gabriel would require chemo and radiation, but no transplant.  A bone marrow transplant is very risky and life threatening. Our lives are transferred to Toronto with Gabriel having no contact with anyone except for myself and his dad for almost three months or until his numbers increase.

So, again I wait… I wait for Tuesday to have his bone marrow tested, and Mike, myself, and my girls to have our blood drawn to determine whether we are a bone marrow match, I wait for Thursday to learn of the results.  I wish I could end with the word “finally,” but I cannot.  I will still have to endure, as the wait is not over…  

Article by David Haas about Physical Fitness Alleviating Cancer Symptoms

Exercising has the potential to alleviate the some symptoms of cancer. Studies have shown that physical fitness can help patients that are undergoing treatments as well as assist those that are in remission. People battling all forms of cancer have shown some improvements with moderate exercise, whether it is breast cancer, mesothelioma, or prostate cancer.

Exercise is one of the most beneficial activities that cancer patients can do as long as it does not interfere with the doctor's recommended course of treatment. There is no certain type of exercise that cancer patients must do, so the basic premise to find some way to get active whether it is swimming, walking, jogging, or even Yoga. Exercises can be done for just 20-30 minutes sessions that occur 2-3 times per week to see results.

Here are some of the benefits of exercise for cancer patients

- Reduces the incidence of cancer

It has been reported that exercise can help reduce the likelihood of getting certain forms of cancer like breast cancer and colon cancer.

- Promotes muscle development

Exercise helps stabilize the body weight and promote muscle development, which is especially beneficial for those with cancer. Cancer treatments can make it difficult to maintain a healthy weight and muscle loss is quite common. Moderate exercise can help the body build muscle and stabilize throughout the treatments.

- Alleviates some symptoms

Exercise has been known to alleviate some symptoms of cancer as well as reduce some of the side effects of chemotherapy and radiation treatments. Many cancer patients struggle with pain, fatigue, depression, and nausea, but many of these symptoms can improve just by doing moderate exercise a few times a week.

- Increases energy and vitality

Exercise has been proven to increase feelings of self-esteem and self-confidence because it releases endorphins into the brain. These endorphins make the body feel more energetic as well. Given that cancer patients generally feel lots fatigue, stress, and depression, exercise will provide lots of mental benefits that will help them cope.

Generally, most doctors approve of exercise being used in conjunction with the other prescribed cancer treatments as long as they do not interfere with anything. Exercise has a lot of mental and physical benefits that help people across the board, whether they have cancer or not.

A Long Time Coming...

First part written in April…

It has been difficult to write a piece for my blog these past few months. There has been much to say about this journey, but have been frustrated with having to actually think, feel, and then share the continuous impact of this disease.  It seems that every time I went to write something that my written words could not even provide enough emphasis of the pain, anger, and fear that goes alongside this journey.   I came to a point in this journey where I began to realize that I was internalizing this journey with my son.  This experience of internalization meant that I was becoming someone I did not like.  I was becoming bitter, easily frustrated and lacked zeal. My peace began to slip away.  In January to April, I discovered I needed to reach out for help.  I was the one on the other side providing help, so I finally realized I needed to find a release so that I could continue on in a healthy way.  This was my first opportunity to truly cleanse from all the pain that I held inside to protect all those around me.  I shared my most inner fears of death and the fight that I had to keep holding onto so that my children and my husband did not have to experience most of this burden.  I was able to cleanse myself by just talking.  I did a lot of talking.  It felt amazing and to know that I was sharing with someone that I did not have to worry about burdening them.  I did not have to sensor what I was saying in order to protect their emotions.  I needed this opportunity.  I needed this cleansing.   I have realized that I took this burden and carried deep within to be the strength for my children and my husband, but overtime it surfaced as do all our struggles.  It took me a little time to realize I was at my most darkest hour and could no longer carry this pain alone.  I am thankful to this person for sharing a part of my journey with me by just listening.

I strive to make this journey full of happiness amongst the sad memories so that life will be less chaotic and unpleasant for our children. In addition, I strive “literally” each day to be at peace with our life and to continue trusting God.  This evening I was sitting in front of my computer and was triggered by a picture of lost friendships and the realization that life will forever be different.  This life is invisible to outsiders of this disease.  Unless, you are invited in to see such pain, fear and questions, outsiders could say that this fight is over and we have won.   I wish that this were true as I sit here today.  Everyday, I question when will this fight be over that I don’t have to look at my son and my daughters to question all that exists in their present and future lives.  The questions that won’t go away and I have to be okay with all these unanswered questions until the return of Jesus.   I struggle with hating this world, but trying to find love in a world where I turn the news on to hear such hatred surrounding God’s children whom he made in His image.  I know that I want to love this world, as there is so much to be done before Jesus returns.

To be cont’d…

Today, June 28^th, 2011…

I never posted the first part of my blog, as it was unfinished.  Symbolic of my life’s journey…unfinished as there is so much to do and people to help. I am glad for that.  I am honoured that God has called me to help those who are suffering. 

 I write today because I need to find my release.  Today, Gabriel received his Lumbar Puncture.  I really hate, despise these days out of all days of treatment.  It is the day that I have to watch my son be forced to sleep, to watch his oxygen levels so that he is still breathing, to watch to make sure his heart is still beating and that he wakes up.  I hate that I have to force him to wake after being “asleep” for too long.  “Asleep” is really a pseudonym, as I don’t really see this as asleep when forced.  I have had two scares during these procedures of oxygen levels plummeting, alarms going off and having a hard time waking him.  I don’t want these days anymore. 

Today, was even harder as I walked by one of the walls at the outpatient clinic to discover a little boy that we have known since the onset of this journey died.  A little boy that my son played with and a little boy that my son prayed that would recover and not have to go back to the hospital.  How do I tell my son that Sebastian lost his battle to cancer at only 7 years of age? 

Update about our Journey

Gabriel continues on maintenance treatment receiving chemo every evening at 10:30 p.m.  Sadly, maintenance is considered less than what he was completing during the intense phase of his protocol.  Envision this…When you are going to sleep we have to wake our son ever so slightly to give him his chemo every single night. 

In addition, he visits the hospital every two weeks to receive a medication through his Porte-a-cathe to prevent a serious form of pneumonia and once a month to receive another form of chemo called Vincristine through his Porte-a-cathe.  Every month for a straight five days he receives another oral medication, which is a steroid that helps stop the production of cancer cells.  Then, we have the horrible Lumbar Puncture days when he still receives chemo injected into his spinal cord.  

We are finally getting close to completing the chemo regiment.  This end is June of 2012.  We are looking forward to this aspect. 

However, please know that this does not end the fear that Mike and I will be experiencing at that date and onwards after completion.  We will forever have to give our fear over to God.   The end of treatment means concerns of relapse, concerns of what chemo has done to his body and mind, and what the future will look like.  We will need continued prayer to take this fear from us that it does not debilitate us as parents.  Gabriel will need continued prayer.  Nonetheless, I do want this journey to be behind us, and I know one day it will be.  I am confident and trust our Heavenly Father that this will happen.  

Smith Family Updates

We have made some changes in our life that have brought much happiness.  We have moved to Woodstock.  We have found our home that we will forever stay, raise our children and hope one day will see our grandchildren come to visit.  We have been creating such cherished memories for even such a short time that we have been here.  We have made such wonderful friends/family at our home church that together they pray and share our journey with us.  We thank them for this so much for their prayers and support.

I have been blessed with spending much more time with my cherished best friend.  She has given me much by just being here, listening and making me smile and laugh.

Gabriel has been attending school and doing extremely well.  He is also playing soccer, which he is also excelling in too.  He is our brave, strong and determined boy that fights an amazing fight.  You would never know that he was ever diagnosed with cancer.  He is my hero and hope one day he will come to know this of himself.

We are looking forward to camp Trillium the end of August and our trip to Disney world the end of September through Make a Wish. 

My girls are getting so big and are developing their own interests.  Simone loves ballet and playing with her stuffies.  She has become addicted to Build a Bear.  Simone is so affectionate and loving toward everyone.  We love her spontaneous hugs and how she goes around the table to tell her siblings and us how she loves us each individually.  She enjoys telling stories and singing to us.  She has a humourous side to herself that shockingly surprises us at the most unpredictable moments.

Yasmine is now 20 months and is quite silly.  She is determined in her own way.  She has been practicing putting on shoes and pants at such an early age.  She prefers to do everything for herself and gets quite angry if she cannot try first.  She loves to make us laugh and will try to find whatever she can do to make us howl.  Currently, she likes to roll her shirt up so that she can make her tummy do a wave motion.  She has also been known to randomly pull out some dance moves that puts everyone to shame.

We have come a long way since day one of this journey on February 10^th, 2009.   I am proud of our children and I am blessed that I have been given such amazing children.  Even though this journey is long and difficult, I have learned so much.  I have become stronger in-person and in my faith.  I pray that one day this journey and my blog will help others in both big and small ways.

July 18, 2011

It seems strange as this journal/blog continues and I seem to struggle at selecting the post button.  I have finally realized that logging my journey has in itself been a process of self-reflection and of honesty to those who read my blog.  I am thankful for this opportunity to create a blog, but have been trying to determine why posting seems to be more difficult.  Perhaps, I don’t want to continue visualize the fearful moments of this journey or that I don’t want to remind others about our journey.  This question remains.  I will continue to ponder why posting has been difficult. To end this blog and finally my post…I thank God that through this difficult journey I have come to see a greater love in our Heavenly Father that can only shine through when we allow Him to be apart of our journey in a closer and deeper walk.  This relationship also contains those painful moments when questions are unanswered, but it is through Faith that we gain an acceptance of our circumstances as one day we will rise to see no more pain, trauma, heartache, sadness, anger and conflict.  I look to that day earnestly knowing that there is much work here on earth to be done before Jesus returns.   I know many of you wonder how to help our family.  An individual at the Relay for Life in Woodstock made a great statement on how you can help...He said (not in his exact words) "We can do the medical stuff because we know this so well, but what we need from those around us is the emotional support.  We need people to hug us and to just listen to us. This is all we need." I share this same sentiment.  

I hope you are all blessed each day and look to the Heavens for strength and guidance.  Thank you once again for taking your time to read my blog.  Blessings to you all!