Jared’s Story: Of Coffee and Cancer

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics, albeit more emotional and difficult to consider.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.   

By Alyson Weissman

We were vacationing in Seattle and the thought of a Starbucks on every corner had me practically giddy.  It was during what my family lovingly referred to as my “Frappuccino craze” that we visited this gorgeous city and it did not disappoint.  For the record, I am not an addict, but for a full year prior to our trip I have been skipping meals regularly to enjoy my beverage of choice. There is nothing more comforting and just downright delicious then a chocolaty chip frap with sticky caramel coating the sides of the plastic cup and a giant pillow of whipped cream sitting sweetly on top. The last day of our trip, as my thirteen-year-old son Jared rested in the hotel room feeling too worn out to leave, I sucked icy goodness through a green straw as my husband and I strolled through Pikes Place.

I made an appointment for Jared when we returned home to California because he was exhausted and his dry, hacking cough would not go away. Dr. Saludares has been my son’s pediatrician for years and I am always a little overwhelmed by her competence and professionalism. Though her office is a bit run down with stained linoleum and old copies of Nickelodeon magazines and Highlight strewn about the place, she is tall and elegant with stick straight posture and sensible pumps. Her white coat is always starched and perfectly pressed, and her voice is soft with a lilting accent I can’t quite place.  She has been the calm to my Jewish mother neuroses and has walked me through strep throat and diarrhea, sprained ankles and most recently 10 days of fever that I thought might never break. She is rock solid this one.

We are led to a small exam room with silly kitten posters and advertisements for acne cream and allergy remedies.

She enters the room and asks a litany of questions about how long Jared has been sick and when did it start and then she examines him with her long, delicate fingers touching him, probing gently. She asks more questions, searching for some elusive answer and then she suddenly becomes very quiet and still. Her hand is on his neck and she asks me, “do you see this?” I do.  And it is huge. It is so big that I am confused. Then distracted. How did I miss this thing? How could I?  I am utterly ruined.

She is no longer gentle as she touches what can only be described as a mass protruding from my son’s neck directly over his collarbone. She is pushing hard and asking him does it hurt? I hear her voice change and she is becoming pale and her tone is now insistent. “Jared, tell me, does this hurt?” He is so in tune with her voice and body language that he too becomes pale as he answers, “no it doesn’t hurt” and I know in some deep primal part of me she needs this thing to hurt, is begging for it to hurt, she is beseeching, she is praying with her words. Hurt.

Doctor Saludares is looking at me with a kind of desperation and I know already. The mind is an amazing thing and I can feel mine shut it all down like a trap. Her face. The mass. The knowledge.  I ask her if she is concerned and she answers simply, profoundly, “yes.” I ask, “Very concerned?” and again, “yes.” I accept this with what must seem utter calm but the truth is I am not even in the room anymore. I am gone.

My next move, for which I have no memory, was to drive my Tahoe over to Starbucks for a tall, double chocolaty chip Frappuccino. Jared cannot believe that I am stopping at Starbucks despite the doctor’s orders to go directly to the hospital for a chest x-ray and CT scan of his neck. I can only imagine this was my last grasp at some kind of normalcy, a taste of comfort in the face of what is coming. Last Frappuccino before the shit totally hit the fan.  To this day, my son vividly remembers the stop and it still angers him.  It was the first of many scenes my mind conveniently erased.

At the hospital I hand my only child over to strangers who proceed to stick him in a giant machine that will read his future. I know that these people in their white coats and solemn masks are gazing at my child’s insides on a computer screen. That they are seeing the inner workings of his neck and I know what they know and it is fucking awful. I can see them through the glass hunched over and they are whispering to one another.  Oh no. How sad. He is just 13. Look at all this. Look.

The doctor has told me she will call me in the evening with the results of the tests and we are eating dinner. Maybe it is chicken or spaghetti or maybe we ordered a pizza. We were trying to keep it light for my son’s sake while we waited for the call that would bring us the news. The phone rang at exactly 6:17 and I took it upstairs with me. I need to be away from my husband, away from Jared, in the bathroom where I can be alone with her and listen.

She is formal and she calls me Mrs. Weissman. “Mrs. Weissman I need to see you and Mr. Weissman at my office tomorrow morning at 8:00 a.m.” Her voice is quiet and grim and I know she is not going to say the word until tomorrow morning at 8:00 a.m., but I have to know. She must tell me something now so I say, “It is bad. right? You don’t have to say the word, but please tell me, because I already know it is really bad,” and she says, “Yes Mrs. Weissman, I’m sorry, it is bad.”

I find myself on the bathroom floor with my face pressed against the cool, stone tiles. I am coherent enough to recognize what a cliché it is that I have fallen to the ground like every character in every book and every movie that gets this kind of news. The floor is the right place to be, so I stay there on my knees bent at the waist with my mind wide-awake and racing. I am dialing the phone in my hand because I need someone to hear me, to help me unburden, to witness this most unbearable grief. My best friend answers on the second ring and for the first time I say the words out loud, “Jared has cancer,” and then with one heartbreaking sob I release it all and I am lost.

Jared and Mom During Treatment

Jared with Mom after cancer treatment.
Jared with Mom after cancer treatment.

The author dedicates this post to Dr. Myrna Saludares, who passed away in April 2013 from cancer.  And she wants you to know that Jared just celebrated his fifth anniversary of being cancer free, which means, officially, he is CURED!  WOO to the HOO!  He is now a college sophomore, living in the dorms, getting great grades, and thriving.  

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Max’s Story: A Celebration of Life

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.   

By Leanne and David Lacewell

On October 29th of 2008, our son, Max, was diagnosed with cancer.  Not just any cancer, but the kind with no real treatment plan or protocol and a terrible prognosis.  He would have experimental chemotherapy and radiation for six weeks, then we would wait for him to die.  Most kids diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) live less than one year.  True to its reputation, DIPG took Max from us on July 4, 2009.  He had just celebrated his sixth birthday.

My first instinct when MTM asked me to share Max’s story was to share our journey, but 1200 words wouldn’t cover the introduction.  However our journey was rooted in hope, faith, and love.   Even now, as we look back on our journey and into our future, we continue to choose hope.  Max taught us that. To me, nothing was more powerful than my husband’s account of Max’s last few days on earth. My husband, David, is not particularly religious and is actually in a stand-off with God right now, but there is no denying that what we witnessed on July 4, 2009 was miraculous and full of hope.  Below is the tribute David wrote to honor Max at his Celebration of Life.

Late Friday night, the four of us were sitting on Max’s bed together. Essentially we were holding our own Little Dude vigil. You see, we were fairly certain that Max was going to pass that night. We did not want to miss any opportunity to comfort him. We had always had an open line of communication with Max about his situation — that is we always made sure that he knew he could ask us any question or he could talk about anything that frightened him. He never mentioned any fear (other than pokes, of course).

As he was laboring in just about every way, Leanne began to assure him that he was going to Heaven and that in Heaven he would not have cancer and that he would never know pain or sadness, again. Little, feeble Max, raised himself up in a panic and sobbed, “I don’t want to die!” All of us were distraught, but especially Leanne as she had brought the subject up and we had never spoken of it before this time –she was certain that she had made an irreparable mistake. All three of us, quickly began to reassure him of the glory of Heaven, the peace and joy, of no more pain, of endless Legos and sushi. He calmed down a bit and was quiet for a minute or two. Then, crying softly, he said, “But dad, I’m only six years old.” As you can imagine, that just about pushed us over the edge of sanity. Again, we spoke of the promise of Heaven, of everlasting joy, and that we would all be together again…that he was going to go and save places next to him. He asked one more question, “what about all my friends?” We told him that, of course, all his friends would eventually be there and that he would save places for them, as well. He lay back down, and was quiet for another minute or two. Then Max looked at us and said very clearly and very deliberately, “I’m ready.”

This was quintessential Max. Yes, we believe that he absolutely was prepared emotionally to go to Heaven, but he also wanted to comfort his distraught mother…to let her know that it was all ok.

It was a harrowing evening, but we made it through Friday night and the wee hours of Saturday. Max woke up around 7:00AM, and we were presented with an incredible gift.

The symptom that began this journey was the Little Dude’s left eye – first it would not move beyond center, and then quickly, it turned in toward his nose due to the fact that the tumor was planted on the 6th cranial nerve. Since November of 2008, when Max looked in the mirror he saw a little boy with a crossed eye.

When Max opened his eyes early Saturday morning, tears formed in our eyes. His left eye was completely back to normal! For most of the morning we could not help but ask him to “look at us, buddy…look at us, buddy…” We grabbed a mirror and brought it into his room so that Max could see what he had not seen in 8 ½ months, a little boy with straight eyes. We asked the palliative nurse if this was a byproduct of the morphine. She said no, morphine would not do this.

So all day Saturday, whenever Max was able to open his eyes we were generously blessed with seeing his beautiful, big brown eyes looking straight at us. It was…exquisite.

For I am the Lord, your God, who takes you by the right hand and says to you, Do not fear; I will help you.

                                                                        -Isaiah 41:13

As Saturday progressed, our son declined. It was a day of unimaginable pain for him and incomprehensible anguish for us. By 8:00PM, he was completely unresponsive, even to reflexive checks, and it was obvious that the end was near.  For the next two hours we remained huddled around him, afraid to move as we might miss him. We stroked his cheeks, and kissed him; we thanked him for being our son, Addie thanked him for being a great little brother. We told him we loved him more than anything in this world. And we told him that it was ok, he was a good boy, he could go; he did not have to stay here in pain. We said to him again that we would all be together very soon.

One of the many things that was painful for us and maddening for Max was that his right side had quickly diminished. By Christmas-In-July, he could not move his right arm from his side, and he couldn’t unclench his right hand at all.

At 10:19PM, Leanne and I were laying on each side of Max, looking at each other’s tearful eyes across his profile, when Max slowly and deliberately, with open palm, reached his right hand toward the sky. Then slowly he returned his right hand to his side. At 10:20PM, on July 4th, 2009, our son, Addie’s brother, Max Channing Lacewell entered the kingdom of Heaven.

You hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory.

– Psalms 73:  23-14

                                                           

We miss Max everyday. His infectious laugh, his love for life, his sensitivity and concern for others, his little tiny body with a larger than life personality, but we still continue to choose hope.  To honor Max and help find a cure for DIPG, we established The Max Lacewell Foundation.  We want to give “little dudes and dudettes” more powerful weapons against cancer and we believe Max would have wanted the same thing.  To learn more about Max and ways to help us find a cure, go to maxlacewell.org.

The Lacewell Family
The Lacewell Family

The Max Lacewell Foundation is hosting a 5K and family fun run on 9.29.13 as well as the annual Best Day Evuh Gala on 11.9.13.  Both events are local to Chicago and proceeds will support the neuro-oncology research of Dr. Stew Goldman at Lurie Children’s Hospital of Chicago.  Your support and participation are welcome.

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Silas’ Story: Home in Heaven

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.   

By Jessica Edenfield

I knew that children got cancer too, but I couldn’t imagine my child getting cancer until it happened. In one day I went from “I can’t imagine,” to “Oh. Wow.”

Silas, my youngest son, was just 3 1/2 years old when he was diagnosed with Hepatoblastoma, a rare childhood liver cancer. Literally only about one in a million children are diagnosed with this deadly disease each year worldwide. There are few known risk factors, and my little Silas had none of them.

Silas was a happy boy, full of energy and life. He loved his brothers, sea turtles, Jesus, and the color gold. Gold wasn’t always his favorite color. That happened because of the cancer. You see, gold is the color for Childhood Cancer Awareness Month and the color of Heaven.

Silas takes his GOLD very seriously.
Silas takes his GOLD very seriously.

We fought Cancer for thirteen months with chemotherapy, multiple surgeries, and even some natural remedies. Nothing worked. The beast shrugged off everything we threw at it and continued to take over my little boys body. Thirteen months after he was diagnosed, they told us there was no “curative treatment.”

It took me a few minutes to understand what they were saying.

I was in the room with three doctors telling me that although they had removed all obvious tumors only a month before, my now four year old little boy had nearly fifteen new tumors and they did not know how to cure him. My husband and Silas’ brothers were downstairs waiting for us to be finished with the appointment. This was not the news we were expecting.  This was just a follow up visit! We were totally blindsided.

When we told Silas that the doctors didn’t know how to make his cancer go away, and we thought that maybe God was getting ready to take him to Heaven, he said “And get my new body!!??!  Yay! I can’t wait to have a new body!” He was beaming ear to ear smiling. There was such joy in his response, he was not afraid.

We had always spoken to Silas about Heaven, since he was a baby. We had many more conversations about it as his time to go there grew closer. We answered his questions openly and honestly. We told him what we knew of Heaven and when we didn’t know, we told him he’d have to find out when he got there. He said his favorite things about Heaven were the streets made of gold and that he would get a new body in Heaven, a body free from cancer, pain, suffering, tubes, and IV lines.

One day, while lying on my arm in bed, Silas asked me to tell everyone “to paint their nails gold for childhood cancer awareness.” I posted this simple message on his Facebook page. A simple request, surely many people could do this.  I had no idea this idea would take off! Within a day people started sending me photos of their fingernails and toe nails painted gold — men, women, and children! Even a few dogs and horses sported gold! People said “I painted my nails gold for Silas.”

Everyone is wearing GOLD for Silas.
Everyone is wearing GOLD for Silas.

I told him this and showed him pictures, but his reaction was not what I expected. He shouted “NO! Not for me! I am going to Heaven soon and I won’t have cancer anymore, they have to paint their nails gold for the other kids with cancer!” I shared what he said and after that thousands of people signed on to his Facebook page and painted their nails gold, making many more people aware of childhood cancer.

I think that God took a lifetime worth of grace, compacted it, and gave it to Silas all at once for his not quite five years of life. He was wise beyond those years and he really lived — more in his short life than many have lived in 100 years! Everyone who met him loved him, even many who never met him, but heard his story.  He had the most contagious smile.

Silas lived 2 1/2 months after the doctors said they could not cure him. Those months were filled with much joy for our family, but also much heartache as we knew we would not have him for much longer. It hurt worse than anything to see him in so much pain, to see his body being taken over by the cancer. I will never forget the amazing smile that came across his face when I showed him his package of nail polish and the bottom of the bottle labeled “Silas Gold.” His eyes lit up and he smiled so brightly as he said “That’s my name!”

Rocking in my arms, he took his last breath just ten days before his fifth birthday. We celebrated his birthday several times over those last couple of months, but he always told me “My real birthday is going to be at home in Heaven.” He knew.

Silas cannot be replaced. My arms will always ache for him. It has only been a little over a month since he went “home to Heaven,” as he said it. The tears still fall.

I think there is a cure out there. I think there is a reason so many children get cancer. We just do not have all of the answers yet. Silas is cancer free now, running down the streets of gold in his new Home in Heaven. But I hope and pray that you never have to know the pain of fighting cancer with your child. Be aware. Kids get cancer too.

Silas
Silas

Awareness. Support. Funding. Cure. Hope.

My generous thanks to the Edenfield family, for sharing Silas’ story here. Their grief is fresh and will change in time, but never go away.  Kraft och omtanke. 

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