Sunday, July 4, 2010

Laugh, Love and Joy

Outings and Fun

I am reminded that my children are growing when I look at my pictures over the last few months.  I was told this quote "the days go by slow, but the years go by fast."  I don't think you can truly understand this quote until you have children.  There are days when I am not sure when sleep will come again, but when I look back at how quickly time truly does goes by I am reminded again to slow down as time does slip by fast.  A constant theme in my posts!

We have been enjoying this beautiful weather.  We have done much since my last post in April.  We went to Niagara Falls for a few days in May to stay at Great Wolf Lodge.  We had a blast and was reminiscent of the days before diagnosis.  Gabriel was accompanied by his cousin for this trip, which was so much fun to have him with us.  We have been doing some smaller trips to parks, and playing a lot in our backyard.  Gabriel has been practicing riding his bike that we just purchased this past month.  He seems like such a big boy as I watch him peddle around on the road as we walk.  Simone tends to walk when Gabriel is biking.  She could walk loops around our subdivision.  She seems to have a tremendous amount of energy, which she often reminds me of myself and makes me laugh.  I guess having 50% of my chromosomes may have resulted in something from her mommy.  It will be interesting to see what my three children will become, but right now I continue to teach myself to focus on the gifts that are provided in the moments.  However, one particular area of thought that both Mike and I share pertain to our recent conversation about the future.  This thought was triggered after our niece graduated grade eight.  We realized that this milestone will be significant for many reasons for each of our children.  A particular important attribute for our family is that we know our children have defeated and won this journey of cancer.  Graduations represent a completion to our family in so many different ways that even though I don't want the years to go fast I do look forward to putting this part of our life behind us.  The worries and fear will forever exist, but I am realizing that I must give everything over to our heavenly Father so it does not create a shadow of bitterness and negativity.

We just went camping at Pinery Provincial Park.  The evenings were quite cold, but lots of snuggling did the trick at keeping warm.  We enjoyed a few days together a way from home, but we were quite happy to be back in our cozy beds after two nights of chilly evenings.  We have also been spending lots of time at my mom and dad's trailer at Springlake.  There is so much to do for the kids at the park (splash pad, beach, boating, fishing, sports galore, and driving around in the golf cart).  The trailer park is only 10 minutes from our house, so it is very convenient and encourages relaxing and having fun with our children.

We are looking forward to our Childcan day at Wonderland, Camp Trillium and our trip to Disney World in October.  We also have a cottage weekend planned with Mike's side of the family, which will be fun for the kids.  Our annual Bender camping trip is coming up too!  This has been going for years now and all the children look forward to this time together.  My side (19 people) spend a long weekend at the Pinery.  Our summer seems to be booked with many exciting outings and activities.    

On the Homefront

We have added a clothes line and garden this year, which reinforces my need to be environmentally conscious and protective concerning what chemicals we ingest.  I love that I will be able to pick fresh vegetables.  I also love smelling the fresh air on my clothes and using less electricity to dry my clothes.  When I was in University I was always seeking ways to be an advocate for the environment and human rights issues.  Since I have not been in school my focus has turned to the best that I can provide for my children. I have learned that I can still find ways to meet this passion within the boundaries of my home/property via online and simply small changes to my own life.  I miss getting involved in activities, but in time this too will return.  One area that has returned in my life is the opportunity to go back to work.  After University, I wanted to make sure that my children would always remain first.  I realized I could not do this unless I stayed home full-time.  I chose to work one to two times a week in the evening in private practice providing individual, marriage and family counseling.  I love want I do and knowing that I am helping people with various stages of their lives. I have been back for two months, which has been great to be able to give back by helping others. The changes in my area of work pertain to specialization.  I am working on my Gottman Marital Certificate and researching specialities in the area of helping families with a child diagnosed with cancer.    I am not sure where life will lead, but I am willing to go wherever our Heavenly Father leads me.

Special People

I wanted to insert a "special people" piece in this blog as Mike and I have met many people over this past 1.5 years of treatment that are on a journey with childhood cancer.  One family in particular is Bob and Dione.  We recently met Bob and Dione at Springlake. Their son was born with no function in the left side of his heart, which he needed a transplant.  There is a high risk of cancer for post-transplant patients.  Their son was diagnosed with Burkitts Lymphoma. We share similar concerns and fears and has been wonderful talking about this journey with them.

We also think often of Connor and his family.  Connor is one-year younger than Gabriel.  He was diagnosed with ALL too!  We think of your family and wish you much happiness.  We hope that we will be able to get to know you more as you share our faith in God and many concerns that this journey brings.  We enjoy the updates we receive on your caring bridge website.  Thank you for posting to update everyone.

We also hold close to prayer families we have met such as Carla Garrett and their baby son.  We also hold close to prayer Jacob from Woodstock who was diagnosed with AML.  

Treatment Update for Gabriel

I always leave this piece to the end as I don't want this to be the overarching area of our family.  I must admit it is very hard.  Mike and I find our conversations always lead back to the discussion about this journey.  It includes treatment, past experiences, oncology doctors, our sympathy for others going through this journey, etc...  It seems there are so many areas of discussion that we have to look at each other and say "enough."  As for our journey, it does continue.  Mike and I know that most people don't realize that his treatment is still extensive with many difficult days, weeks and unpredictability.  Gabriel's immune system has been very low for over three weeks, which meant that he has not received chemo for almost four weeks.  Our anxiety increases as this happens because if a child during the duration of maintenance (Gabriel 2.5 years) is off of chemo 10% of maintenance it increases the chance for relapse.  If relapse occurs it also increases the chance for bone marrow transplants.  This is one of the two reasons we want people to tell us if your child or yourself are sick as if Gabriel gets sick all chemo is withheld.  This cannot happen if at all possible. 

Gabriel's medication regiment is quite detailed, which is shared between Mike and I.  Mike has to do the chemo as women in child-rearing years are not suppose to handle chemo.  Scary!  You realize how potent this medication must be if oncology has recommended for women not to handle this stuff.  I give Gabriel his septra (prevention medication for serious form of pneumonia) and his dexamethasone (we call it the grumpy medicine as it changes our son's personality drastically).  Mike has most of the medication protocol has Gabriel receives his oral chemo every night around 11 p.m. at which he has to wake him.  Every Wednesday night Gabriel then receives two different types of chemo meds.  In addition, once a month he receives chemo via his port-a-cathe and every three months a lumbar puncture to insert chemo in his spinal cord.   As I type this I cannot help but have tears well up in my eyes.  I tend to operate as a robot concerning treatment as this helps me get through all details.  When something different occurs (fever, exposed to a potential Hep A scare, chicken pox, scares with our other children) I am quickly reminded that this journey has its moments of fear and anxiety that have to be dealt with outside of my robot function.

Gabriel began chemo again one week ago and started off at 50% of dosage, but one week later was raised to 75% as the closer to 100% the better.  Our oncologist is still determining proper dosage so his neutrophils are not too high or too low. We pray that this is determined by the time Gabriel goes to school.   Gabriel has missed one month of T-ball and soccer as a result of his neutrophils being low.  This part makes us sad as he cannot just be a child.  He is back to T-ball and Soccer again, so it was nice to be able to see him run around. 

Please pray for the following:

1.  No Fevers and remains healthy
2. Does not Relapse
3.  No side effects from chemo 
4.  Protection over our Girls

Thank you for spending time reading this post and a small part of our journey!  Mike and I are gradually venturing out and spending time with friends.  We look forward to these moments will all our friends and family.