Tuesday, October 16, 2012

How to Help

I am sitting on my bed at the hospital watching my son sleep peacefully.  A different story is observed when I walk by many rooms absent of parents on floor six.  Little children sit alone as they fight a disease, whether it is cancer and/or serious infection. It breaks my heart when a child has to be alone without family and/or friends.  They are alone in a room without support that give them strength in a world that is confusing and unknown. I want to go into each of these rooms to hold these children to tell them they are not alone, and they are loved.   Volunteers at the hospital are always needed to spend time with children. 

I am thankful for the people that Mike and I have in our life that care for our children.  My son has never been left alone.  We fight alongside advocating for his rights, supporting him with love, and listening to his questions and sorrows.  Even through all this we often suffer in silence so we can be strong for our children. I ask that we pray for all the children who do not have this support, but they find it in someone within these hospital walls.  It only takes one person to make a connection, and to make a positive change forever in these children, who may not have this support at home.  I pray for the parents that have lost so much, but find the one person they can lean on that eases their suffering.

These hospital walls are covered with parental suffering.  Perhaps, one of the possible reasons rooms on floor six are absent of a supportive figure is a result of the emotional pain being too great.   A parent embodies all that a cancer journey entails physically, mentally, and emotionally.  As I have been walking this journey for four years I have heard a common thread amongst parents.  This commonality is the lost support of family and friends.  It saddens me, that we, as cancer families, share a common thread of suffering of our children, but also that of lost friends and family.  It hurts knowing that this journey causes loss at many levels.  The other theme areas of discussion are medical care/treatment protocols, and our child[ren]. It helps to have families who share in the same pain, but there is also something important in maintaining connections with those that existed long before this journey.

Most families are overly stressed, exhausted and in pain as they worry constantly about their child.  We all know that fighting cancer is not like fighting an infection.  It is not something you can say "I hope he/she gets better soon."  Cancer means we worry about death. This concern never escapes a parent.  Every decision is made cautiously, by both the medical staff and parent.  One wrong decision can mean the life of your child.  Yes, this sounds gloomy and dismal, but what is amazing is the very same parents are the most amazing parents who have come to cherish life.  They make the best out of every moment.  They love better, they laugh better, and empathize more than most. 

Most families are confused as to why friends leave.  We know this journey is exhausting and overwhelming.  The uncertainty on how to help the parents can be a daunting task.  In addition, listening to the endless concerns and medical treatment can cause anyone to run.  If I can offer all those reading this post from my time listening to the painful experiences by parents and through our own experience...don't communicate less often.  If you have a friend or family member who needs support ask how you can help.  If that parent does not respond.  Small gestures to say I am thinking of you is all that they may need.  Share your concerns about wanting to help, but uncertain how. Most importantly, just hug us and listen to us. All any parent wants when they are suffering is to have someone to listen without judgement and to have a shoulder to cry on. You don't need fancy words, advice or even to say anything. A simple..."I am here always to listen, to support you, and to give you a hug."  If a journey is long for parents they may need continued support.  Often parents comment that friends/family stay around for a while, but it seems the longer the journey the less frequent people maintain contact.  This outcome is sad to us as most parents need support beyond these hospital walls.  The part that I find difficult is that I cannot always given back because this journey is full of limitations.  One day...I will!  I have so many dreams about what I will do to give back.  I cannot wait! 

Mike and I have appreciated that small sentiments during our journey that have encouraged our hearts. Thank you for the meals, the unexpected cards, messages on facebook, e-mails and phone calls from those that never gave up on us.  Mike and I have lived a very limited life over these past four years because we had no choice.  We had to and have to continue to protect Gabriel until he is no longer immuno compromised. 

There is so much to this journey with the medical care and treatment that we would never expect anyone to know all the details.  I wish that this journey's completion date was once Gabriel engrafted, but we were advised there will be continued risks and concerns for at least one year post-transplant. Many continue to be shocked when a post is shared that Gabriel is admitted, as there was some thoughts that we were finished.  We continue to move forward, but there will continue to be risks.  BUT...this is a very big BUT...it does not mean that I have lost faith in my heavenly Father.  I trust that God has His hands on my son.  I believe that my son will  have an amazing testimony to share when he is an adult.  As a believer in Jesus Christ I am being taught patience.  I would love if  Gabriel could be at school, play soccer, and my girls could attend activities in the community.  I would like to be able to attend social events without hospital admittances and infection risks, and work part-time helping others who are suffering.  However, this is not my life at this time.  I am being taught patience.  I am being taught to trust my heavenly Father.  Yes, it is hard to be patient.  I am sad and frustrated only because I want this journey to be done.  I continue to trust and have faith in God.  Four years is a long time to have your life on hold.  I must say I excell sometimes in this journey and sometimes I fail.  

Update:

Gabriel has been inpatient for almost two weeks for symptoms of vomitting and diarrhea.  Diarrhea and vomitting that persists is always a concerning symptom, especially post-transplant.  As a result, Gabriel had to undergo a scope to determine cause.  The preliminary report shows ulcers that could be CMV in his colon and possible GVHD in his gut.  The problem is that GVHD and CMV have opposing treatments.  The concern at this time is how to treat without complicating one infection over the other.  There are risks to treatment, so London is consulting Sick Kid specialists once pathology report is received.  We are reluctant here in London about treatment, but feel better knowing Sick Kids will be authorizing treatment strategies.

How you can Help

I wanted to create a list of helpful ideas as to how you can help those who have a family and/or friend whether it be a parent or a person fighting cancer.  If you can add to this list...please add on facebook.  I think so often people don't know how to help.  Perhaps, a helpful list is a good start.

1.  Mail a card
2. The hospital website allows for e-cards that are delivered to patients room
3. Phone calls even to just leave a voice mail saying you are here whenever you need someone
4. E-mail to encourage and to check-in
5. Attend Clinic with parent or patient
6. Meals
7. Gift Cards
8. Surprise family with a meal at the hospital
9. Special gifts to say you are thinking of them.
10. Call to go out for a coffee/tea
11. Donate blood in honour of patient and/or set up a blood donor clinic in you town to honour  patient fighting cancer.
12. Leave a special note in their mailbox at home to encourage and show support
13. Random jobs around their house
14. Childcare and Petcare





 

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