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.
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Mary Tyler Mom 