Ongoing Experience of a Cancer Diagnosis-My Niece Eloquent Words

About a month ago my niece, Brittany posted her thoughts and feeling regarding the end of her son’s (Ward) chemotherapy, the removal of the port and what it feel like to be a family that has survived the initial phase of cancer treatment, in a way too young boy (diagnosed at 1 1/2 years of age). I wanted to share it with you because it is poignant and real. I get this as a cancer survivor. I get this as someone who saw their husband die from the disease. I get it and yet I don’t. Each of our experiences with this diagnosis are just a wee bit different. Here is what I know-the diagnosis of cancer sucks. Plain and simple. Yet, for those of us who survive we each must find a way to move on, figure out a new norm and try to remember to live and breath every day.

Brittany’s Caring Bridge Note.

“And just like he rang the bell, chemotherapy ended, a scan was officially clear and all cheered.

Except me.

Why?

I want to breathe out, I have been holding my breath since December 8, 2017 at 10:30 a.m.

I thought this was THE end.  But it’s not.  It is simply AN end.  This is the beginning for a new phase of cancer, living scan to scan.

His name is off the prayer list, the cards won’t come anymore, we won’t see our doctors weekly, and the average friend thinks we are done, praise God.  The only thing that will keep coming is advice, a blessing and a curse.

There is no back to normal, we live now as a family traumatized by cancer.

The life we used to live meant we’d be planning a vacation and buying plane tickets, but now I count how many scans are between us and that trip, and how many times do we have to all hold our breath and hope to hear the words, “the scan is clear” again.

The life we used to live included parties, lots of summer parties.  But now parties make me anxious. Who is coming?  Are they sick? Do they know he had cancer?  Will they ask the hard questions?  Will I be triggered into anxiety by something new I don’t even know will trigger me?

The life we used to live included trust.  Now I ask do I trust his doctors?  Do I trust my decision-making?  Do I trust we can keep living?  Do I trust that the floor won’t crumble beneath us?

December to May we lived in triage.

We woke up, put on our pants, took a deep breath and did the emergency work the doctors guided us to do.  We showed up on time, we held him, we medicated him, we cleaned up the messes, we hugged each other, we cried when necessary, and we loved harder than we ever loved before.

But the triage phase is over.  We have paused.  We look back.  We look forward. We look inside.

When will we breathe out?

It may never be all at once.  But we will slowly exhale over the years with each new day, each giggle, each birthday, and each milestone.  We will slowly exhale each clear scan and each year further from cancer.

Hope and love will remind us to breathe in the meantime.”

End of Chemotherapy-Yay

 

This will not be a long post but….I wanted to let my followers know that today my great nephew Ward got to ring the bell. Chemotherapy is done. Yay. Today Ward and his family and friends celebrated the end of this phase of his treatment. There was a party at National Children’s Hospital of Columbus (Ohio) to celebrate this milestone.

 

Ward arrived at the Magic Forest, off the lobby of the hospital, to be greeted by friends and family to celebrate. With the help of his parents he rang the bell and the celebration was on. Cake was eaten, well Ward, I heard, ate enough icing for four adults.

 

 

 

 

Below are photos of family celebrating for Ward in different areas of the country.

Aunt Adrienne

Grandparents and parents

Florida Grandparents

 

Great Uncle Frank

Cousin Quinn

 

Great Aunt Ginny

Now everyone is home and probably tucked in for the night. My sister Ruth and her husband, Joe are there and I am sure everyone is taking a deep breath and letting it out. No more chemo trips to Children’s for them.

Although frequent CT scans are in the future for several years to come, right now Ward can become a toddler. He will have to be careful to stay away from the sick adults and children. He will, however be able to do more and more and become a normal social toddler.

I could not be more proud of my niece and her husband. They function as a loving and caring unit. I am glad they are part of our family.

It was a good day today.

Ward Revisited

Flight 93 National Memorial

 

 

 

 

 

 

 

I am on my way west. I have been traveling west, though Pennsylvania and Ohio for a week. It has been wonderful to meander west without too much hurry. I pushed east last March to arrive in the Columbus area to help my niece, Brittany and her husband, Trip with their son, my great nephew-Ward. On this westward journey, I have the pleasure of stopping and seeing all kinds of interesting places, including my niece and her family, once again.

Ward is still in active treatment for childhood cancer. The good news is, he has one more chemotherapy treatment, next Friday. At the end of that visit he gets to ring the bell at Nationwide Children’s Hospital, marking the end of this phase of his treatment. Whew, I believe we will be happy to see this phase of treatment end.

Dad & Ward

Throughout treatment Ward has remained a rambunctious and active toddler. He will celebrate his second birthday in early June. Since I saw him in March he has grown and his hair has become fairer. He is putting his words together a little more. He remains an absolutely charming young boy.

It has been interesting to revisit with this part of my family again. Brittany and Trip continue to support each other and Ward. I appreciate their honesty in dealing with a most difficult situation.

Next month Ward has surgery to remove his port. Quarterly CT scans will continue to be apart of their life for many years. Now this might sound routine yet I know how much this will create stress, with each scan for years to come. they will hold their breath until the results come back. Ward on the other hand will continue to grow as a strong, young boy should. He will not hold his breath, we will all do that for him.

He has a most loving and supportive family around him. My sister, Ruth and her husband, Joe now live in two states. During the warmer months they will be in Ohio. They have bought a condo in a town near this young family. They are here to babysit and help in whatever way they can. Ward will return to day care and pre-school, part time, in the fall and will return to full time in the New Year. Ruth and Joe will remain in Ohio until he returns to full time. They also have a home in northern Florida and will probably be glad to see it when the snow arrives in their Ohio home.

I am glad this family has welcomed me with such grace and loving, open arms. I know it will be quite a while until I see all my family again. The west is calling and I must go. It helps me to travel and explore knowing I am loved and supported by all of my families. Who are these families that I speak of?

Tomorrow I will leave here and begin first to travel north to the south shore of Lake Erie, visit with a long time friend of mine in northern Indianna, mid-week and then head west.

Today I am feeling especially thankful and grateful for my family and the time I have had to visit with them. Now it is time to continue my adventure-Life.

Getting ready to move on, Miss Elsie and me.