Lola’s Story… a tale of DIPG

The thing is, cancer steals our kids.  We punish every other thief, we get scared when they are close to us and we hate how they violate our personal safety.  Cancer does this and keeps doing it… you are not scared for your child until you realize that this thief does not discriminate…

I love Lola, and her WHOLE family.  I am grateful to God that He connected us.

The day of Lola’s Best Day Ever we tried to create ‘Heaven’ for Lola, I am sure we failed compared to the Heaven Madeline lives and that Lola will see… but we tried.  I remember a little conversation Heather, the helicopter pilot, told me about.  Lola asked her how she became a Helicopter Pilot.  Heather told her she had other plans, but one day she went up in the sky and just knew that she wanted to do just that, and she did.  Lola told her what she wanted to be, but hesitated because she knew she would not be gifted the time to grow up.

Cancer stole that…

Read Lola’s Story- today is her birthday, her gift of one more birthday was granted today.  Will her momma get to hug her for one more?

Lola’s Story

Told by Her Momma

As a parent of a child with DIPG, I am often thinking back to the months leading up to Lola’s diagnosis. In fact, the whole year prior is a time that sticks out in my mind because our Lola was beginning to find her voice, her path, and thrive in our new home.

In May of 2015, the year before Lola’s diagnosis we had just moved back stateside from Germany. It was a huge adjustment, but as a military family we have learned to acclimate quickly and keep moving forward. We spent the summer adjusting and discovering our community and new home before school began for the children. Soren, Lola, and Ellis thrived in their new schools while Izel stayed home. The new experience can be a little bumpy but they kept pressing forward, learning and growing. Lola ran for treasurer of student council the first weeks of school even though she didn’t know anyone, and believing she could win. Unfortunately, she didn’t, but she made plans for the following year to run for President of student council. Throughout the 2015-2016 school year Lola also joined basketball, soccer, battle of the books, math & science club, and Little Flowers. In the summer of 2016, we were active outdoors at the splash park, camping, riding bikes, going to festivals, fishing, hiking, playing soccer, visiting with friends and traveling to visit family.

When I look back at the summer of 2016, I think I should have known something was happening with Lola. The signs were there. They were small but they were there. She lost balance, was more tired than usual, had headaches that were different than those she had before. I thought it was just puberty.

The first week of August 2016 we visited family in Chicago and pretended to be tourists in our hometown. We took a guided tour of the city, we visited family, and went to Medieval Times. By the end of our time in Chicago I noticed Lola’s left eye did not move as it should. I thought maybe she needed more rest or she might have had too much screen time. I asked my sister to verify what I was seeing. Maybe my eyes are playing tricks on me? It was such a small thing to see. It wasn’t immediately obvious. Yvette said she noticed it as well. When we returned home I made an eye appointment thinking she needed glasses. The week and a half leading up to the eye doctor appointment the left side of her face became paralyzed. I remember hoping that it was her eyesight and nothing more, but there was a nagging feeling that something just wasn’t right.

The eye doctor said her eyesight was perfect and to see her pediatrician since she is experiencing some headaches. We were able to get an appointment with the pediatrician fairly quickly. Our pediatrician asked a series of questions and had us travel to the local hospital for a CT scan. After being sent to the local hospital, then an ophthalmologist, we were finally referred to the Children’s hospital in Syracuse for a MRI. The possibilities of it being something minor changed with each appointment to something life threatening. Lola was admitted on a Wednesday and we waited until 1am Friday morning August 26, for her MRI to take place. I prayed. I prayed a lot that it was nothing serious. By 9am Friday morning I was told the results. I asked when her surgery would be to remove the tumor. The answer was surgery is too dangerous. Lola’s brain tumor is deadly and about 10% of children will live past 9-12 months. After 24 months only 1% survive. I asked for a priest to perform the sacrament of the sick and called Agustin.

When I look back, the years leading up to her diagnosis were perfect. I didn’t know it but looking back I can say they were perfect. Our struggles, our joys, our health, our pains…everything up until Lola was diagnosed was a perfect life. Perfect because Lola was with us and had a future. Our dreams, her dreams…they all disappeared after she was diagnosed. DIPG stole our daughter.

Lola understood the diagnosis and was so full of hope and God’s grace. As the school year started, she began radiation treatments. All of our family came in from Chicago to celebrate what we thought could possibly be Lola’s last Birthday. It was wonderful and in Lola’s words, “It was the best birthday ever! Can we do it again next year? Or how about every year for my birthday?” The last time she had her entire family with us to celebrate her birthday was when she turned one year old. On November 12 she had her Confirmation and the next day was her Make-a Wish.

In December of 2016 she was on trial at St. Jude. Lola chose to do the trial to hopefully help children in the future. We knew it wasn’t a cure. We knew it was to test the side effects of two drugs taken together. The trial was a spirit killer. Lola persevered for 5 months on the trial. I don’t know how she did it. It took 5 months for her to come to a breaking point. Five months of gross tasting drugs, rapid weight loss, constant nausea, headaches, vomiting, diarrhea, pokes and blood draws, dehydration and hospitalization. The side effects were terrible. During her trial she also struggled with not going to school or seeing her friends. She struggled with not participating and missing out on life. On April 24 she made the decision to stop the trail. Lola’s tumor responded extremely well to her first round of radiation and there is no evidence that the trial helped to give her more time.

Lola’s life and health after the trial has improved significantly. She began physical therapy so she could gain her strength back. At that time she had become so weak it was difficult for her to walk up the stairs in her school. She was able to attend the last two months of school and begin again. It was emotionally difficult because the dynamic with her classmates had changed and she was lost when it came to schoolwork. Still, she moved forward.

 

This year was spent doing as much as possible with Lola before her 9-12 month diagnosis anniversary. It truly was a whirlwind of adventure, opportunities, sightseeing, and travels. Once again, the first week of August found ourselves in Chicago and we began seeing the symptoms progress. At first, like last year, I thought she needed more rest. Deep down I knew. Like last year, when we were home I called her doctor, this time her oncologist. An MRI was scheduled for August 10th, 16 days before the anniversary of her diagnosis, the results showed progression. Re-radiation was scheduled immediately and a plan had been set in place for Avastin infusions every 14 days.

Lola began her school year with no aspirations of student council, basketball, or soccer. She has left behind her physical days as she is a bit wobbly and struggles with some double vision. She looks forward to helping out with student council, cheering the basketball team, joining the board game club and Science Olympiad. She still dreams big, but she has made some adjustments. I can’t imagine knowing you have a terminal diagnosis, dealing with the nuances and emotions that being in middle school and a pre-teen (soon to be teenager) involves. It is such a hard time in life and it is not made easier with a terminal diagnosis. Lola with all her prayers, hopes, and grace rises above and continues to move forward.

September 24 is Lola’s 13th birthday. Last year, I worried she would not live to see her next birthday. I have prayed for her to live long enough for one more Christmas, one more celebration, one more milestone, just one more. I still pray. We are very fortunate and blessed that she is doing so well with minimal symptoms from her tumor. In October, she will have an MRI to find the results of her last round of radiation. As of today, Lola’s prognosis is 3-4 months, which lands in November or December timeframe. We pray for one more Christmas, one more milestone, one more birthday, just one more.

We celebrate her birthday, just the six of us today, blessed and grateful that we were given one more birthday with Lola and pray and hope for one more…

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s