Sunday, October 30, 2016

Thoughts on being a parent of a child recently diagnosed with cancer




It was late afternoon on September 11. Caleb has been admitted to Huntsville Hospital a couple of days prior with knee pain and a fever. His initial diagnosis was osteomyelitis. The plan was to have a PICC line placed and have three months of IV antibiotic therapy. My biggest concerns at the time were that we might miss our fall break beach trip and whether he was going to be able to go to school with a PICC line. 
I


Caleb and I were napping when the hospitalist woke me up and said something like this......"I want to give you a minute to prepare yourself.....The oncologist is on his way to speak with you, it is malignant, and you need to go ahead and call your husband to come to the hospital."  WOW!  That was a lot to wake up to and process in a couple of minutes. I called Zack, who had lots of questions to which I had no answers. I went into nurse mom mode with my notebook and pen. 

We then met with a team which included the hospitalist, pediatric oncologist, social worker, and child life specialist. They told us Caleb had B cell acute lymphoblastic leukemia and that we would be leaving for St. Jude's via ambulance the next morning at 4 am. We would be there for 6-8 weeks, and his entire treatment course would run about three years. 
Since then, many of you have been following our journey. We have been here in Memphis for about 7 weeks now. God prepared me for this journey.  I had just gotten home from an evening session of women's conference and heard this message from Pastor Leisa: The Rock Family Worship Center Leisa Nelson 9/8/16  I called the next morning and got an appointment at 1:30 with the pediatrician. I went to the morning session of the conference  and heard this amazing message from Keela Craft: The Rock Family Worship Center Keela Craft 9/9/16
 
I knew the message was for me and that I was about to walk a difficult path.  Little did I know how soon it would begin. The Lord continues to give me the grace to walk this journey. I could NOT do this by myself. 
The love and support have been overwhelming. We have had people organize fundraisers, design a t-shirt, and create a Go Fund Me account to help with expenses.  Some have sent cards, gift cards, and many gifts for Caleb and myself. Several people have asked what they can do to help with things at home and with Kohen.   Can you help????  Of course, although it is hard to even think and verbalize what we might need.  We have a Caring Bridge site in addition to a Facebook group that we may use to help communicate these needs and give updates on his progress.   
Please don’t think of me as rude or ungrateful if you have not yet received a text or card thanking you for a gift or money that you have sent. I have not tackled this task yet, but we really do appreciate everyone's kindness. I am keeping a list and will get there eventually. If you are worried you sent something and it hasn't made it to us, please text or email me. I only have one package I know of that has been lost so far. 

Can you visit here in Memphis or when we come home? ABSOLUTELY! We love seeing familiar faces! I miss everyone so much!!! I only ask that you MUST have had your flu shot and not be sick though. We will be home for 10 days once Caleb's labs are stable and then repeat the 24 hour infusion of methotrexate her in Memohis three times and then the majority of his treatment can be finished at the St Jude affiliate office in Huntsville.


Answering question is hard..........especially ones about the future. We are in a day-by-day mindset. If I get too far ahead of that, it is very overwhelming!  He has a three year treatment course. I can only take it as it comes without becoming anxious and overwhelmed. 


I understand that sometimes people don't know what to say, but trying to relate and compare my child's situation to your co-worker's brother's wife that died of their cancer is NOT helpful. Unless you have had a child with cancer (particularly a preschool aged child), you have NO idea what this is like. On the other hand, I appreciate stories about kids who beat childhood cancer and are grown and doing great 30 years later.  I also appreciate when people share what’s going on in their lives as well. Even though cancer does rule my life right now, I still want to be able to support those whom I love.  
Acknowledging Caleb's struggle and facing it head on is how I roll.  When a child is diagnosed with cancer, the whole family fights together. We have tried to keep things as "normal" as possible for Kohen, and he has done great!  While everyone is different, I bet every parent would agree that having support from others provides strength. Showing that you care, either in actions or words, is a powerful way to help a family with cancer.  We love and appreciate you all, and we continue to ask for you to lift us up in prayer.

Love,
Alicia







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