Category: Guest Bloggers

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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 Joanna Stibgen Meyers

I was visiting with a friend this week and Paige’s CaringBridge (blog of her illness) came up. It was described as “heavy” and “intense.”  Really??!! Imagine living it….

Before cancer, Paige was bright, funny, nurturing and caring. She was also sassy, bossy and independent. As a 10 year old girl, she loved to giggle with her friends, mother her little brother, and had a passion for animals. She was intelligent and an aspiring veterinarian. In her illness, all those attributes continued, and even blossomed. It’s impossible to capture her essence with one blog post. She was amazing and inspiring….and silly and feisty and still bossy! And through it all, she wanted to look after her brother and his well being was one of her biggest concerns. She was always thinking about everyone else.

On September 25, 2006, I took her to the pediatrician after a weekend of fever and a sore throat. After a two hour wait, we were told that she had leukemia (after further testing, we learned it was AML M1). I was expecting strep throat, not leukemia! Her first question was, “Am I going to be ok?” I responded, “I do not know what’s going to happen but I do know two things. First, I will be by your side every minute, and secondly, I will never lie to you. I will tell you everything.” She was immediately calm and said, “Ok, what’s next?” That was Paige. We were then escorted to the PICU (pediatric intensive care unit) at the adjoining hospital. And the journey began…we were to have 5 rounds of inpatient chemo over six months.

As I look back over our Journal entries, a few things stand out. We spent more days in the hospital than at home during the first 3 months of treatment. On a December 5th post, I referenced being home for 9 days as being spoiled…wow. It was very difficult to be away from my son (who was 8) for that long. But I followed Paige’s lead and kept a mostly positive attitude. In the midst of so much suffering and separation, there was so much compassion and gratitude. I am a believer in God. Not a God that causes bad things to happen for a greater purpose, but a God takes the bad and creates good from it. We were and still are humbled by the outpouring of love and generosity that came from our community, friends and family.

Here is an excerpt from my thanksgiving post:

Happy Thanksgiving Everyone,

Paige’s wish for Thanksgiving today was she hoped everyone on our floor would get to go home by tomorrow!! She has so much to teach all of us. I continue to be amazed by her!

We have so much to be grateful for in our lives. One good thing about being here at Children’s is we are constantly reminded that there is always someone worse off than us. Kind of keeps the complaining at a minimum!!

My greatest wish for tomorrow would be that everyone just take that moment to STOP. Stop the bickering, complaining, arguing, and dis- contentedness. STOP and cherish the time you have with your families. Cherish your children, your spouses, your friends, your boyfriends/girlfriends, and even your exes (they most likely gave you wonderful children). Be grateful for all our God has given to each one of us. I know I sound preachy….but, just don’t wait for adverse circumstances to make each of you realize how very much we all have to be thankful for.

Happy Thanksgiving!!!!

With Love,

Joanna and Paige

Still good advice.

Her attitude never wavered. She endured with a grace beyond her years. Her hope was that if she had to have cancer, maybe it would mean that her friends would be spared. She always said she was glad it was her and not her brother, as he could never handle it! She was so very protective of her little brother. Paige endured 4 rounds of chemo, each lasting 5-10 days and 5 admissions for fever lasting several days – several weeks during the first 6 months of treatment. After round 4, she spent almost 2 full months in the hospital with one infection after another. Her body just could not recover.

Then on March 22, 2007, the words a cancer mom never wants to hear….RELAPSE. The leukemia had returned.  I will never forget my journal entry from that day.  Paige had a week reprieve and then restarted chemo. It was intense and landed her back in the PICU with more complications.

There was a constant balancing of the leukemia and the side effects from the chemotherapy. Until in June when the other shoe dropped and we heard the words “out of medical options.” Still, Paige never lost faith, or her sense of humor. One day while in the hospital, Paige was not able to eat all day long due to testing. When she was finally given permission to eat at 8 pm, she wanted filet mignon and a baked potato. We scrambled trying to find how we could get it to the hospital. She savored every bite. Upon swallowing the very last morsel, immediately asked for the “pink bucket.”

I felt horrible for her as she emptied her stomach contents into our ever constant companion. When she finished, she looked up and said “Well, at least I got to enjoy it twice!” The nurses at the hospital still remember that incident and her positive attitude when then think of my beloved Paige.”

It’s about that time I notice an urgent cry in my posts about the need for better funding and better research for childhood cancer. It’s also when Paige noticed all the Pink for breast cancer. It was September, CHILDHOOD CANCER AWARENESS MONTH and no one knew it outside of the childhood cancer community. “Where’s the GOLD?” she asked. I had no answers. She made me promise to make sure everyone knew about Childhood Cancer because surely if they knew just how bad it was, they would do something about it, right? I promised I would make a difference. Her life would make a difference. So as painful as this writing has been, with tears streaming and turning to sobs at the relapse paragraph, I do it….for Paige.

Paige’s goal was to bring awareness to Childhood Cancer, represented by the Gold Ribbon. Paige wanted no other child to suffer. Paige wanted the Gold Ribbon to be just as symbolic as the pink ribbon, generating funds for research. Paige believed that:

AWARENESS=FUNDING=RESEARCH=A CURE

Paige’s battle with cancer ended on November 7, 2007. Paige’s Pals continue the fight in her honor. We will participate in the Chicago CureSearch Walk on September 7th at Soldier Field. To join us or donate to RESEARCH, please visit our team page.

I first saw Paige’s Mom in the hallway of Children’s Memorial Hospital. We were just admitted for Donna’s first round of chemo in June 2007 the same day that Joanna had learned that Paige had “no medical options.” To see her mother’s pain was honestly shocking for us, too painful to even consider.  Paige and her Mom have since guided me into how to show strength and love and perseverance.  I am grateful to them both.

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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.

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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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 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.

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.