A special welcome to everyone to The Story Room......Hope and Courage. We meet Monday evenings, starting around 8:00 pm EST. A PAC2 member posts his/her story, and the rest of us can read and reply. The person "hosting" each week will stick around a bit to read and reply to your comments. There are no rules in The Story Room. Please share whatever you want to share. Whether you are in the fight now, are off-treatment, or have lost a child you can come to this diary and process your story in whatever way works for you. We can't solve each other's problems, but we can be a sounding board and a place of connection. If you would like to volunteer for a specific date, please contact us at firstname.lastname@example.org - everyone is welcome. This is the schedule for the upcoming weeks, let us know if you would like to contribute.
There was a time when I thought I really knew what “normal” meant. We were normal...my husband and I were expecting our second baby boy, I stayed home with our first son, Jack, while my husband worked as an Electrical Lineman, we had a great family and a great group of friends that we would spend our time with...life was good.
Our second baby boy, Braden, was born in February of 2010 and around the same time Jack started feeling sick and we thought he just had a cold. With Braden’s birth, we found out that he had a large hole in his heart and that really threw us for a loop that our baby was sick. Within days of learning about Braden’s heart condition and after a few trips to see different doctors, we learned that we had to check in to Phoenix Children’s Hospital because an x-ray showed a large mass in Jack’s chest. In March of 2010, our 2 1/2 year old was diagnosed with Stage IV Neuroblastoma cancer and our family was no longer considered “normal”.
Braden had weekly cardiologist appointments to make sure there was not too much fluid building in his lungs and to monitor the hole in his heart with hopes that it would start to close on its own. Since we had to be in the hospital with Jack so he could start his treatment, my family started taking over with caring for Braden while we were gone. Having Jack being diagnosed with cancer right after we learned of Braden’s heart, turned my world upside down. I could hardly believe that my little boy was this sick when only a month ago we were at the science museum on a play date watching our kids run around like crazy. It didn’t make sense. I asked Jack’s nurse, “How in the world are we going to do this? How do we go from play dates, morning walks, park visits, and fun to all of this?” She said, “You will get used to it, this is your new normal.”
And it was...suddenly normal consisted of our days filled with doctors appointments, EKG’s and Echo’s for Braden right along side of blood transfusions, chemo, radiation, immunotherapy, Accutane, pokes, scans, tests, bone marrow transplant, isolation and much more for Jack. With great joy I can say that after a year of very close watch with Braden, his hole has closed considerably and surgery has been ruled out. He is growing like a weed and very healthy. After 14 months of very intense treatment, Jack has clear scans and is doing extremely well. He went from having cancer on every bone in his body to having no cancer at all. We have been very blessed. Jack was able to have his broviac out in May and we have to get scans every 3 months to make sure the monster that is Neurbloastoma is not coming back.
Now Jack is in preschool and we are busy with not being at the hospital. I asked Jack’s same nurse when we were giving the all clear, “What am I going to do without you all? We got so used to seeing you every day that you are part of our family and being away from you scares the life out of me.” She said, “You will get used to it, it will be your new normal.” Really? That word again...normal.
Here is what I think....there is no normal. Our life before cancer was just simply our life. Our life during and after cancer, is still just our life. We did not want our life to go that way. We did not want our children to be sick and we never in a million years thought that our life would consist of Jack having cancer. What we did want was for them to get better. We wanted Braden to grow stronger and avoid having heart surgery, and he did. We wanted Jack to go through treatment like the fighter that he is and show cancer that he would be the one to win. We wanted Jack’s little body to come through with as little side effects as possible, and he did. We are so happy about the outcome and pray that Jack will always stay cancer free.
Does realizing that there really is no “normal” make all of these adjustments any easier? Not at all. Watching Jack go through all that he went through has been the hardest part of my life but I can imagine it was much harder for him than me. It makes my heart hurt that he was one of the 46,000 innocent children that was diagnosed with cancer. It was very hard going from a healthy family to practically living at the hospital. For me it seems even harder to go from living at the hospital to being home and away from all of the doctors. My fear of having Jack get sick again explodes up any time he complains of anything. He could say his toe hurt and I automatically think that something awful is happening. Hopefully we will go from this constant fear of the monster coming back to being less scared one day, but for now we will just take it one day at a time. For now we are enjoying our time together and watching the boys grow and change with every minute that passes.
Thank you for letting me share my thoughts and as always, pray that cancer stays away from my little guy.
With Hope Always,
Thank you very much!
Thank you so much for writing this....thank you for understanding. Hope all is well with you...
I am so sorry that you lost your son...it just makes me stomach sick each and every time another parent tells me they lost their child. I am so sorry.
If you need anything or just need to write and vent....you can email me at anytime!