| Jake's cancer journey began in January of 2001. He had been complaining of back pain on and off. Over the holidays, he had been snowboarding and wiped out and he had been diving for swim class at school. I thought the discomfort was due to that. His Dad took him to a walk-in immediate care when Tylenol just was not helping anymore on a Sunday. The dr. put Jake on an antibiotic because he thought he had a pilonidal cyst. It seemed to help for about 2 weeks. We then took him to our GP. He sent us to a surgeon to see if he could take care of the cyst. He could not find anything and at this time, Jake was now running a fever and in immense pain. He was admitted to a hospital and our nightmare began. A ped. gastro dr. from another hospital was called in. He sent Jake home after 2 days with Tylenol #3 and an appointment to see him the next day for a colonoscopy. It was found that Jake had the beginning signs of Crohn's disease, but it did not explain his pain. Again he was sent home. The ped. gastro. dr. called me 3 days later and I told him Jake was not better and the pain was worse. He scheduled an MRI for Sunday. On Monday, February 12, Jake's 14th Birthday, he called and told me that they had found a tumor and he wanted Jake to come to another hospital immediately to see the ped. oncologist. He said that it did not mean that the tumor was cancerous, but just hearing the word tumor, frightened us. We made it there in 15 minutes and met Jake's new dr. He sedated Jake and did a bone marrow test, which came back negative. I then spent the next 6 hours with Jake while he had full body MRI, bone scan and X-rays. Jake was in so much pain that I stood behind the MRI machine rubbing his head, holding his hand and talking him through it. The results were what every parent fears. How could he have this? He had always been healthy, went for yearly physicals, etc. Jake had cancer with mets to his skull, vertebrae, ribs, along with the primary baseball size tumor in his sacrum. The pain he had been experiencing was from the primary tumor pressing on the sciatic nerve. A biopsy was done on one of the two skull tumors and sent to a lab out of State. His dr. narrowed it down to 3 childhood cancers and we were actually hoping for lymphoma. However, it was Stage 4 Ewing's sarcoma with survival rates hovering around 15% and his dr. told us he hoped to give Jake 18 months. By this time, Jake was on a PCA pump with morphine for the pain, which he had an allergic reaction to, so it was changed to dilaudid. We decided on a portacath, so that Jake could swim and still feel like a normal kid...Jake felt the overwhelming need to feel and look like himself. He started the standard protocol for ES chemo and he was finally discharged after 2 long weeks. Within 3 days after the chemo, Jake was painfree and would remain so until the end of October. Our summer was wonderful between chemo. Jake didn't let the cancer run his life. He rode his bike, swam, and hung out with his friends. He had a Make A Wish trip to CA in May of 2001 and threw out the first pitch at his beloved Chicago Cub's game in August. He had homebound tutoring, but missed going to school. He went to his 8th grade graduation, his Freshman Homecoming and football games. He experienced a few blood infections from his portacath, so it was taken out. One of his vertebrae collapsed, so he had radiation from the T8 to the T10 and adriamycin was stopped. Things seemed to be under control and for 9 months, we thought Jake was actually going to beat this! Jake would tell us not to worry and no tears. He was so positive through all of this, even when we found out on October 30, 2001, that the cancer had spread to his bone marrow. Jake had radiation to the remaining skull tumor to relieve the discomfort. We also started high doses of adriamycin. We explained to Jake that things were bad. He knew that the adriamycin could stop his heart once we got past the safe amount of doseage, but he just kept hoping it would work. By Thanksgiving, Onycontin and Oxycodone were just taking the edge off his pain. He would be painfree for about 15 days between chemo, but the pain wouldn't stay away. It was then that we decided to try an intrathecal catheter for the pain. It worked wonderfully for Jake. No pain and he didn't have to endure the drugged feeling. We asked that his next dose of adriamycin not be until the day after Christmas...which was at the 29th day since his last chemo. This dose would put Jake past the safety range. We wanted to enjoy our Christmas with Jake, because we knew it would be our last. That didn't happen. Jake had been having a hard time swallowing since before Thanksgiving and his voice was hoarse. His ped. gastro dr. felt it was scar tissue from chemo, radiation and acid reflux. On Friday, December 7, our day started like any other day. I woke up and went into Jake's room and sat on his bed. I told him he needed to take a shower because his dressing needed to be changed. He said, "I'll take one tonight when I get home from the hospital." I told him he kind of stunk, kiddingly. He said, "I don't care, I'm just going to the hospital." He won. :) We then left for the hospital. His oncologist saw us in the hallway and looked at Jake and said, "Jake, you look like you need some blood." His counts were very low and he had just had 2 units of blood and 1 of platelets 4 days earlier. Jake was admitted. They were concerned because they didn't know where the blood was going. Jake was also very jaundiced. Around 5 p.m., Jake had something like a seizure with 4 more to quickly follow. I think they were similiar to what happened when he had his first blood infection when the infection spread and not a seizure. He was alert after each one, so it puzzled his doctors even more. Jake even asked his favorite nurse, Vicki, "what do we do now?" His Dad and I couldn't believe it! His oncologist told us that they could do a CATscan and go in, but at this point, he said if there was anyway that Jake could go that he would wish for, this was the way. We agreed painfully. Jake had been through so much and his body was falling apart. His sister, Megan, was with us through the afternoon and she told Jake she was going to go home for a nap, but that she would be back. They kissed, hugged and told each other love you. It was the last time Megan saw Jake alive. Around 8 p.m., Jake told us he wanted to get into bed. I looked at Phil and said, no! Jake never slept in the hospital bed. He always asked for a recliner, so this scared me. Finally, we relented. Phil and I were on each side of the bed with him holding his hands. Jake's breathing was rapid now, but he was still alert. At 8:40 p.m., I asked him who was holding his right hand and he said, "Dad." I asked who was holding his left hand and he said, "you Momma." His breathing started to slow. He took the washcloth off of his forehead and wiped his face. I was kissing his head and telling him that I loved him. He started gasping for air and I told him it was okay to go....that it would be okay...to just let go....this was the hardest thing I have ever had to say, but Jake needed to hear it. I was still kissing him and holding his hand, as was his Dad. He lifted his arms into the air, two tears rolled down and he stopped breathing. I laid my head on his chest and listened to his heart stop. He died at 9 p.m. That day felt surreal and I will never forget it. Jake always did everything his way throughout his 11 month journey with cancer, so it was only fitting that he did it his way at the end....he didn't let the cancer whither him away or beat him. We all miss him terribly. It is the most awful empty feeling with him not here. We have since found out that Jake had two blood infections and that is what took his life. But, Jake went to Heaven peacefully, painfree and without fear. I have no regrets because my precious child knew he was loved every minute of every day and he knew we did everything that was possible. My greatest wish was that this would have never happened, but I do not regret one moment of time I shared with Jake through the cancer. The good will always outweigh the bad. His bear hugs, blowing kisses, practical jokes, mouthiness, teasing (especially his Grandma), knocking down trees with his Grandpa, love of music and movies, faith in God and angels, determination and strength, his kind heart, our late night heartfelt talks and morning cuddles, his appetite for fastfood, his bickering with Megan that only siblings do, stinky flower appreciation when gardening with me and calling me, "momma", and the shared passion for the Vikings and Cubs with his Dad are memories that will get us through, because Jake wants us to. Jake loved life and life loved him. He loved people unashamedly and showed his love every day. He brought us all closer together and we will keep that because of Jake. Family and friends meant everything to him. We only had him for a short 14 years, but Jake worked incredible magic on all of us. He will never be forgotten and will always be in our thoughts and hearts. WE LOVE YOU, JAKE! Keep skateboarding without pads, eat until your hearts content, watch over us, visit us, dream with us and we will all be reunited once again in Heaven when our time comes, sweet Angel Jakie...our Superman...our child...our beloved son. |
