Do you ever have a time where life’s negativities seem relentless? That you want to wake to a newness and completeness that feels better than the days leading up today? I do! Some days are stronger and other days I am reminded that I can bear all things with God by my side. However, my human side that comes from pain and suffering sometimes does burst to the forefront of my thoughts. Sometimes I have those days that I wake to reminders that all that made me feel “normal” has been taken. I know that these emotionally disturbances will awake in my spirit during unpredictable moments in this journey. Relentless is a word that I often describe this journey, which often awakes deeper pains from my past where suffering once was a story of my life long ago. An ongoing journey within my soul to ask God of my destination and how can I use all this suffering to help those around me. I want the feeling of relentless to dissipate, so it no longer symbolizes my journey. There are many good days where I feel God’s hand upon my life and the peace that flows. I see God’s hand throughout many moments in my life from the people He has brought to my life to the only remarkable events in my life that can only be explained as the almighty power of God.
Many people have asked about this journey with our son and what it looks like for our family. As I have sit here trying to create an image for those reading my post that allow some insight into everyday life…it is hard. However, I am going to try to provide insight into our days, weeks, and months and why I feel the word Relentless stands out for me.
A Glimpse in the Present and Future
My son, since 2009, has been fighting cancer. My son has been fighting cancer over half of his life. His mom and dad have been fighting for normalcy and health for all three of our children for almost 3.5 years. Our daughters have spent more of their life behind walls of a hospital and interacting with hospital staff. My children are at their most comfort in a hospital, but once we are in the community they become insecure and shy. At a park, my children struggle leaving my side because this is not a place they we have consistently gone for fear of contracting infections that would put Gabriel at risk. My children have been forced to become older in years because of this journey. I do see so many moments where my children are children. However, there are many moments that my children seem older than they are. Simone to hugging both of her siblings saying “it is okay…don’t be scared.” My daughter is four-years old. She has so much strength and caring that I feel two competing emotions of both sadness and proudness. Yasmine, at 2.5, asks us many times “He okay…mommy?” I feel sad because I cannot tell them and don’t want to tell them the implications of cancer. Gabriel who is brave, but also so scared. My son has anxiety that many times regresses to the little boy I knew at 3 when he was diagnosed. How do I expect any more than this when for more then half his life he has been fighting cancer? Being a parent in this journey has you question so many different aspects on what is right for the present and the implications for the future. I don’t know if I am always making the right choices, but I pray and seek God to help me direct this path for my children.
As our journey continues our life has gone back to isolation most days. We don’t leave the house if Gabriel is neutropenic as the risks are too great. This change also involves isolation for my girls too. I try to do the best I can to find activities for them to do at home and outside. The outdoors has been a great place for our family as it decreases risk for infections. Mike and I spend a lot of time hand washing when we go into the community. We still have to attend to errands in the community, so we are very aware of who is around us that may be sick. To always be so conscious becomes very tiresome. However, we would do anything to keep our son safe.
We spend a lot of time at the hospital where my son receives chemo in many ways. He receives chemo in his port-a-cathe, leg injections and orally. I never imagined having to give my child an option of what he would prefer as a “poke” (needle). A conversation may look like this “Sweetheart, do you want to have a finger poke or a poke in your port-a-cathe today?” Did I ever fathom that one of the questions to encourage age appropriate decisions would be concerning a place for a needle? I don’t believe that this procedure is a decision that any child should ever after to make. However, in terms of allowing kids to feel a sense of control when so much has been taken is important. Providing Gabriel this option allows for him to feel a little bit of power over his life. Most days he does not have a choice has he has to receive chemo through his port, but on days where it is to check his counts...he gets to choose.
This life is also very unpredictable. We could be having a great day at home. Gabriel smiling and running around, but instantly things can change. Gabriel has spiked a fever when there have been no symptoms. We have to rush to emergency where he is placed in a isolation room away from all other infections that run rampant in emerge. As a result, we are admitted as inpatients for a minimum of 4 days. We have spent a lot of time as inpatients during this journey. Our plans have changed quickly many times since the start of this journey. Our family has often felt a sense of disappointment when planned family and friend events have to be cancelled. Our plans for scheduling normal family activities are always based around Gabriel’s immune system. Our family has gone through scary infections since Gabriel’s diagnosis from the swine flu to two bouts of pneumonia, and many other unexplained infections that resulted in fevers. God has protected Gabriel throughout all of these serious infections. There are nights when Gabriel has no neutrophils that we are up checking for fevers. As he has become older he has been able to articulate how he is feeling, which is helpful for us. Mike and I continue to have many sleepless nights to taking care of health and emotional needs of our children.
As for the near and long-term future of this journey…my son has to undergo full body radiation that will kill all remaining cancer. In addition, he will receive such a high dose of chemo that it will kill his own bone marrow so that he can then undergo a transplant. As I sit writing this portion of my post I am listening to a song called “aftermath” by Hillsong. I am trying to listen to the words so that as fear and deep pain from knowing all this information I do not feel weak. I am trying to remember, “God is with me to light the way.” I cry as I think of the near future and what my son has to endure. I have not told him yet as his anxiety would overtake him with the unknown. There are many risks to a transplant from future diseases and to being life threatening. Once his transplant is complete Gabriel is at a very high risk of contracting infections as his new bone marrow begins to establish itself. Gabriel will be in complete isolation. He will not be able to see his sisters for at least 4-6 weeks. The most concerning period of time is the first 100 days post-transplant. Mike and I are the only ones that can go to be with him. As a result, we will only be able to go back and forth from the hospital to Ronald McDonald house for 4-6 weeks. I don't know how to tell my children that we cannot be together as a family until Gabriel recovers. Skype will work for a short period of time, but sometimes it may be too difficult to not have my children to reach out and hug each other.
Until the time of transplant Gabriel continues to receive chemotherapy at very high dosages until the required testing on the donors is complete. We have not received a date for transplant, but know it will be happening before the summer. We are currently planning for a two-month stay in Toronto. I no longer work as I have taken a leave of absence from work. My husband is working to get prepared for taking 4 weeks off to be with us in Toronto. This change will be a financial burden, but we finding strength in many ways…especially through God.
Thank you for reading my post today! I hope that you are reminded everyday of the blessings in your life. There is always much to feel blessed about. I see this in my children and those around me.
Thank you to everyone who has blessed my family through messages, financially, food, and providing an ear to listen.