#1 Going for Gold
September is Childhood Cancer Awareness Month. Its color is gold. Every day in the month of September, we share a piece of Aidan’s cancer story. Each day we post an entry from his blog chronicling his 7 months in treatment. Through our words, you will learn about pediatric cancer. It’s true, there is sadness and heartbreak, but his story is also one of courage, joy, resilience and hope.
Aidan’s Army is a memorial foundation. Aidan was a young boy with a brain tumor who is now buried in the earth. Only a few know of his journey. Only a few know what truly happened to Aidan during those 7 months of treatment. That journey is what we will share with you over the next 30 days.
Every single day 46 children are diagnosed with cancer. Every single day 7 children die of cancer.
Cancer is the number one killer of children by disease. Yet, inexplicably, research for pediatric cancer remains grossly underfunded. In fact, all 12 major groups of pediatric cancers COMBINED receive less than 4% of the federal budget’s $4.6 billion for the National Cancer Institute. It is shameful.
We are sharing Aidan’s story in an effort to raise awareness of pediatric cancer. Increased awareness of pediatric cancers will ultimately lead to more funding for research. Research for children with cancer who are fighting for their lives today, research for children who will be diagnosed tomorrow, next week, next year… They could be your children, your grandchildren, nieces or nephews…
#2 Groundhog Day
It was the third week of December in 2009, Aidan’s sixth week of preschool. Santa would be coming soon. We were busy preparing to host a Christmas Eve celebration in our home. In the early morning hours of Monday, December 14th, Aidan woke up vomiting. We kept him home from school and as the day progressed it seemed like Aidan was feeling better. In the early morning hours of Tuesday, December 15th, Aidan woke up vomiting. Again, we kept him home from school and made an appointment with his pediatrician for that afternoon. “He has a stomach virus,” she said. “Rotovirus has been going around. We have seen many cases this week. Take him home and increase his fluids,” she said. And we did. Wednesday morning came and Aidan was looking good. He ate his breakfast. He was happy. He had boundless energy. Off to school he went.
In the early morning hours of Thursday, December 17th, Aidan woke up vomiting. And he didn’t stop. We went back to the pediatrician. I was signing us in, paying our copay, as little Aidan was holding my hand and vomiting in the garbage can next to me. Aidan was seen by a different pediatrician in the practice who also stated that it was a stomach bug. We left the office with a prescription for Zofran. Most of you have never heard of Zofran, an anti-nausea, anti-emetic drug. It is a miracle drug, ask any cancer family. Aidan’s vomiting stopped.
For the remainder of that Thursday and into Friday, Aidan was back to himself. He looked good. He was happy and energetic, running around the house, playing with his dinosaurs and crashing his cars. He was not acting like a boy who has an awful stomach virus.
On Friday afternoon I watched as Aidan walked through the kitchen. Although he didn’t walk, he staggered. Aidan swayed back and forth like he was drunk. Aidan’s dad, a pharmacist, said that Zofran can cause extrapyramidal side effects. I fully understood that terminology. I’m a chiropractor. My career is based on neuroanatomy and neurophysiology. We would have never imagined, not in our wildest of dreams, that we would be using our medical backgrounds in understanding what would happen to our son over the next several months. For the many reading who do not know, the extrapyramidal motor system is a neural network in the brain involved in the coordination of movement. We agreed to discontinue the Zofran. And just as the Zofran left Aidan’s little body, his staggering gait disappeared.
In the early morning hours of Saturday, December 19th, Aidan woke up vomiting…
#3 The Nightmare
It wasn’t long after waking on that Saturday morning, December 19th that Aidan was back to himself. He was the rambunctious little boy that we loved so much. He hurriedly ate his breakfast so that he could get back to his business of being an exhausting 2 ½ year old boy. We went about our normal weekend routine. It was our average Saturday, errands, laundry, playing with Legos, having a dance party. Aidan loved to dance in the middle of the kitchen floor to Elvis Presley’s “Suspicious Minds.” He had exceptional taste in music at such a tender age. After dinner, we settled into our family room to watch Toy Story. Again. It was one of Aidan’s favorites. He dressed as Buzz Lightyear for Halloween just a couple of months before. Shortly after the movie started, Aidan began vomiting. This poor boy has been vomiting on and off for nearly a week. Our level of concern was rising. We took him to the emergency room.
We gave the ER doctor a brief history. She examined him and ordered a liter of IV fluids for him. That is exactly what we expected. “Rotovirus is going around…” she said. Yes, we have already been made aware of that. “Do you have any other concerns?” she asked. Yes, we do. We relayed the brief moment when Aidan staggered in our kitchen the day before. It was unsettling. She ordered a CT scan. She then stated that she was leaving for the evening (it was shift change, around 11 p.m.) and that after the scan, the nurse would unhook Aidan’s IV fluids and we could go home.
Aidan had the CT scan and was brought back to the ER. We waited. And waited. And waited. The ER doctor came back into the room. She closed the door, sat down on the stool, put her hand on my knee and said, “Your son has a brain tumor.” And with those words, our lives were forever changed. On December 19th of 2009 every parent’s worst nightmare became our harsh reality. Disbelief. Shock. Terror. Fear. She stated that Aidan would be transported to Children’s Memorial Hospital.
It was decided I would go with Aidan in the ambulance and Aidan’s dad would go home, grab some clothes and meet us at Children’s. The ER doctor, God bless her, stayed with me the entire time while we waited for transport. I do not recall any of our conversation. I do remember her tearfully, hugging me tight as we left.
We now know that one of the most common, although not universal, symptoms of a brain tumor happen to be early morning vomiting. And that Zofran and a brain tumor in the cerebellum can cause clumsiness in walking. Now we know.
The 38 mile ambulance ride to Children’s seemed like an eternity. I sat in the passenger seat looking out at Lake Michigan as we drove down Lake Shore Drive, Aidan sleeping peacefully in the back. I had never known such terror. I could barely breathe. It was around 2 a.m. when we arrived at Children’s and were admitted to the neurology unit. Shortly after, a neurosurgical resident came in the room to talk to us and examine Aidan. He was there from Japan. He spoke poor English. As the visit went on we weren’t certain that he understood English. There weren’t adequate answers to our questions. There was too much head nodding. This cannot be happening. We were in hell.
Aidan began to cry. He was scared. I was scared. And as I clutched him to my chest he vomited down my back.
#4 A Sharp Knife
On Sunday morning, a handful of hours after our arrival on the neurology unit, Dr. Gump walked in the room. He was the neurosurgical fellow. He looked to be a thirtysomething man with kind eyes. He was quirky, in a good way. He answered all of our questions and addressed our concerns with patience and understanding. Later that morning, we met Aidan’s neurosurgeon, Dr. Alden. Dr. Alden was a handsome man with a big presence. He was, undoubtedly, in charge. He relayed the plan for the next few days. Aidan would have a full MRI that morning of his brain and spine. He would have surgery first thing the next morning to resect the tumor that had attached itself to his cerebellum.
It was Monday morning, December 21st, our third day at Children’s Memorial. It was my mother’s birthday. Each of you reading can guess what her birthday wish was, a healing prayer for her grandson. Our family gathered together that morning in Aidan’s room waiting for him to be taken off to surgery. I was standing looking out the window, holding Aidan as he cried over and over that he wanted to go home. “Go home, mama. Go home.” Those words still haunt me today. We weren’t taking Aidan home. We were sending him off to surgery where his brain would meet a sharp knife.
Aidan was brought down to the pre-surgical waiting area. The anesthesiologist came to speak to us and administer a dose of Versed to Aidan prior to his surgery. We kissed him and asked him to be brave and roar like a dinosaur (we often played that game at home). Aidan did just that. On the gurney, wobbly from Versed, our sweet boy got on all fours and roared. Just like a dinosaur. I cannot relay to you in words how comforting that moment was to our family. He is going to be okay. He is a fighter. He roared like a dinosaur.
Six excruciating hours had passed before Dr. Alden finally appeared in the doorway of the waiting room. He believed that he had removed the tumor in its entirety. The tumor tissue sample would be sent to the lab for identification and staging. It would take a few days for the results to come back. Before going to recovery to see Aidan, we were told that there would be a long tube, inserted into the ventricle in his brain, coming out of his head leading to a pipette. This device, an EVD, would allow any cerebrospinal fluid buildup to exit his brain. It would also measure intracranial pressure. This is standard after this type of surgery and would remain in Aidan’s head for a few days.
Aidan was brought up to his room to recover. He slept off the anesthesia most of the day. When Aidan woke up, he was different. He had a blank stare and he didn’t speak. We were informed that one of the risks of surgeries in the area of the cerebellum was the development of something called cerebellar mutism. It happens in approximately 25% of cases. They don’t know why. Cerebellar mutism is a symptom complex including decreased or absent speech, irritability, low muscle tone, unsteadiness and deceased coordination, and the inability to coordinate voluntary movements. Mutism produces a severe incoordination of the motor aspects of speech. This means that Aidan didn’t lose his language. He simply couldn’t get his mouth to work to form his words. The muscles that one uses to form their words also happen to be the same muscles that one uses to eat. Aidan was unable to eat. He had no control over his tongue. We were told that the mutism may last for as little as six days or as long as 52 months.
It was the next day that Dr. Alden asked us out into the hallway to review Aidan’s MRI. One of our worst fears was confirmed. The tumor on Aidan’s cerebellum had spread into his spine. Our beautiful boy could not eat. Our beautiful boy could not speak. Our beautiful boy had metastatic brain cancer.
#5 Naming of the Beast
(It was at this point in Aidan’s story that we began keeping a blog about what was happening to our sweet boy. It was impossible to manage all of the questions, phone calls and e-mails. Repeating the same thing over and over was exhausting. There was too much information to be shared. So, we would write a post here and there to keep our friends updated. Throughout the remainder of Aidan’s Cancer Story you will see actual excerpts from those blog posts. They are dated and note what day it was during Aidan’s stay at Children’s Memorial Hospital.)
Our son had metastatic brain cancer. Dr. Alden said it was likely medulloblastoma. There are four different variants. We would have to wait for confirmation from the lab after the tumor was analyzed. We were reeling from this latest news. We were exhausted. We went on to devour everything we could find on medulloblastoma. Treatment regimens. Clinical outcomes. Survival statistics.
Medulloblastoma is the most common malignant brain tumor in children. It is a highly invasive tumor that arises in the cerebellum and has a tendency to metastasize throughout the CNS early in its course. The peak age of incidence is 3 – 5 years.
Medulloblastoma has four distinct molecular variants each with different clinical outcomes. Patients younger than 3 years old have the worst prognosis. Aidan was 2 ½. The 5-year survival rate is approximately 30%. However, patients with metastatic disease do considerably worse. Aidan’s odds of surviving this beast were less than 3 out of 10. We did read that young children with the desmoplastic type are more likely to survive. Hope. We also read that the anaplastic type was the most aggressive and had the worst clinical outcome. Fear. You know your child is sick when you are wishing for one tumor over another. Medulloblastoma is an evil beast. The tumor sheds it cells into the cerebrospinal fluid where they can sit in wait. Dr. Alden was confident that he completely resected the tumor but, when dealing with medulloblastoma, that doesn’t matter. It has been shown that without further intervention (chemo and radiation) this tumor would return 100% of the time. Always. Medulloblatoma is an evil beast. It bears repeating.
It was a couple of days after surgery when we met Aidan’s neuro-oncologist, Dr. Jason Fangusaro. We liked him immediately. Words will forever fail me when trying to describe the high esteem in which we hold him. Dr. Jason is a kind man with a warm smile and a big heart. He is a man with the most difficult of jobs. His life’s work is treating children with brain tumors. Can you imagine? Statistically speaking, about half of his patients die. It takes a very special person to choose that career path.
We discussed Aidan’s diagnosis and road mapped his treatment plan. Due to his young age, he is considered to be at high risk. Dr. Jason said that he had seen high risk patients with metastatic disease respond to high dose chemo alone and of course, that was our hope. Aidan’s chemo regimen would be brutal. He would have five cycles of chemo that would require an inpatient stay of four days each time. This would be followed by a stem cell transplant. The drugs were dangerous. The doses were massive. So much so that they would have to pre-hydrate Aidan with fluids before the chemo was administered and post-hydrate him so that the toxins could be flushed out of his system after. He would require a baseline hearing test because one of the drugs commonly causes hearing loss. That same drug causes kidney damage. One of the other drugs is toxic to the bladder… An aggressive tumor requires aggressive treatment.
The plan was to keep Aidan in the hospital for a few more days. We could then take him home to recover for a week or so before bringing him back to begin chemotherapy. There was no waiting.
We spent Christmas with our family in the lounge on the neurology unit. My mom and sister made dinner for us. We were “making the best” of a devastating situation. Aidan was moving one step closer to being discharged. His intracranial pressure was tested through the EVD that was inserted into the ventricle in his brain. Dr. Alden was pleased with what he saw. The pressures looked good and the drain was removed. He said that Aidan would be released in 48 hours. Except he wasn’t.
Blog entry dated December 31, 2009 (Day 13 at Children’s Memorial) “… Aidan’s pathology report came back. The beast has been named. He has medulloblastoma. Sadly, Aidan was diagnosed with the anaplastic type. It is the most aggressive form. The survival rate is poor…”
Aidan was diagnosed with anaplastic medulloblastoma, M stage 3.
#6 Drip. Drop. Drip. Drop. Drip…
*I will warn you that this 6th installment is particularly horrifying. When putting together Aidan’s story I almost omitted this entry. But then I thought better of it. This was part of Aidan’s journey. This is his story, not mine. I will honor the details of what happened to him. And reflecting back on it now, this installment is telling of what would happen to him over the next several days.
Our family was trying to absorb the painful news of Aidan’s diagnosis. Aidan would be released tomorrow. We would be home for New Year’s Eve. We would kiss 2009 good bye, the bastard that it was, and welcome in 2010. A new year filled with new hope. A new year filled with healing for our sweet boy.
When Aidan woke up that morning he didn’t look good. He had a flat affect. The cerebellar mutism rendered Aidan non-verbal, he was unable to communicate with us. We couldn’t quite put our finger on it, but something was wrong. It was early afternoon when Aidan began vomiting again. The neurosurgery team was making their rounds and we expressed that something just didn’t seem right. They suggested that he be taken down for an MRV which is an abbreviated MRI that shows the ventricles inside the brain.
I was sitting with Aidan in his bed, waiting for transport to come to take him for the scan, when I kissed him on the head. I thought that he was sweating, his hair just the slightest bit damp. We went down for the MRV and were being brought back up to Aidan’s room. The transporter stopped the gurney in front of the room and I picked Aidan up to carry him back to his bed. His hair was soaked. He was drenched in sweat? I felt it dripping down my arm. It was only seconds later when Dr. Gump appeared in the doorway. “Aidan’s ventricles have filled with cerebrospinal fluid,” he said. My husband and I just nodded in agreement as the three of us looked toward the floor. Cerebrospinal fluid was leaking out of Aidan’s head from the access site where the EVD was initially placed. Drip, drop, drip, drop, drip… Like a leaking faucet, CSF was dripping out of Aidan’s head into a puddle on the floor.
Blog entry dated December 31, 2009 (Day 13 at Children’s Memorial) “… In addition to the sad news of his diagnosis, Aidan has been unable to keep anything down despite the anti-emetic drugs. They are starting him on nutrition through his IV because he is expending many more calories than he is taking in. Shockingly, Aidan was back in surgery again this evening because his ventricles were filling up with CSF. They had to replace the external drain to relieve the pressure. They are alluding to the fact that this is only a temporary solution and that early next week he will need yet another surgery to place a permanent shunt into the ventricle…”
#7 Craniotomy, Take 1
We spent the next few days shaking off the horror that was New Year’s Eve and anticipating yet another surgery for our boy. Aidan was resting comfortably. The extraventricular drain (EVD) was back in place so that any CSF buildup could exit his brain safely. Dr. Alden said that a permanent shunt could be placed in his ventricle as soon as Aidan’s intracranial pressure stabilized. It is not uncommon for children with brain tumors to require a shunt. A shunt helps to relieve the increased pressure inside the skull due to excess cerebrospinal fluid (CSF) on the brain, called hydrocephalus. This buildup of fluid causes higher than normal pressure on the brain. Too much pressure, or pressure that is present too long, will damage the brain tissue.
It was early in the day on January 5th when we noticed Aidan arching his back and forcefully straightening his legs. As the day progressed this became more frequent and was accompanied by Aidan violently clenching and grinding his teeth. It was scary to watch. It almost looked seizure like. We couldn’t comfort him. It seemed that any stimulation, even our touch made it so much worse. We had the neurosurgical resident paged and they ordered another MRI, to be performed immediately.
Aidan wasn’t having seizures. He was posturing. Abnormal posturing is an involuntary extension of the head, back and legs. It is indicative of a severe brain injury. Posturing is often caused by conditions that lead to large increases in intracranial pressure. Most importantly, posturing can be an ominous sign that brain herniation is occurring. The MRI would confirm that this is exactly what was happening to beautiful Aidan. Aidan’s cerebellum was massive. It was so enlarged that it was herniating downward through the foramen magnum (the opening at the base of the skull where the spinal cord passes) and compressing the lower brainstem. The brainstem is responsible for controlling respiratory and cardiac function. Compression of this area cuts off the blood supply. It is often fatal. Brain herniation is a severe medical emergency requiring immediate surgical intervention.
Aidan went for his MRI, but he didn’t go back to his room. He was headed to surgery. STAT. Aidan’s nurse was running him to surgery. We were terrified. The double doors to surgery opened and there was Dr. Alden, standing in his scrubs, waiting for Aidan. Just 16 days after his initial tumor resection, Aidan’s head would again be opened in the exact same location. This would be Aidan’s third surgery. A decompressive craniotomy.
Blog entry dated January 5, 2010 (Day 18 at Children’s Memorial): “I am in complete disbelief that I am updating you again so soon. As I write this Aidan is in surgery for the third time. Over the past 24 hours, there have been some significant changes. Aidan’s cerebellum has swollen to the point where it is impacting his brainstem which controls everything (breathing, swallowing, vision, etc.) His surgeons are performing a decompression surgery which entails removing part of his skull and potentially part of the cerebellum itself. Please continue to keep Aidan in your prayers.”
#8 Craniotomy, Take 2
After surgery, Aidan was brought up to a room in the PICU. He was placed on a ventilator. They were uncertain as to the integrity of his brainstem. Aidan was heavily sedated. Dr. Alden removed part of the bone in the back of Aidan’s skull as well as part of the left hemisphere of his cerebellum. This was done to make more room for the swelling that was occurring. The neurosurgical team was unclear as to why Aidan’s cerebellum had swollen up in the manner it did. It was possible that it was reacting to the trauma of the initial tumor resection. It is still unknown.
It was early in the evening the next day when I was sitting at Aidan’s bedside. I was rubbing his back, talking to him, when I saw his right leg contract. I remember yelling to the nurse to page neurosurgery. I knew. It wasn’t long before Dr. Bowman, one of the neurosurgeons, came into the room. She stayed for a while, just watching Aidan. His leg contracted again. Dr. Bowman stepped over to the phone. She called radiology and told them to keep the MRI clear, that they would be bringing Aidan down. Again. The MRI showed a pocket of fluid building up behind the cerebellum. This fluid prevented the cerebellum from descending into the space that Dr. Alden had created the day prior. Aidan was going back to surgery for the fourth time in 17 days. Dr. Bowman met us in the pre-op area. She stated that they would remove more of the bone from the back of Aidan’s skull and likely more of his cerebellum. I remember her speaking to us like it was yesterday. She looked me in the eyes and said, “You have a very, very sick little boy.”
Aidan was brought back up to the PICU followed by two large IV poles filled with bags. Mannitol, to help reduce brain swelling, antibiotics, to prevent infection, morphine, to reduce his pain, there were sedatives and paralytics and IV fluids… Aidan had 3 drains in his head with tubes leading to different pipettes. There was the tube from the ventilator going into his lungs. It was too much. Little Aidan was engulfed in plastic spaghetti. It was all too much.
Dr. Jason and Dr. Alden came to see Aidan the following morning. Aidan was in a precarious position. Dr. Alden stated that there weren’t any further surgical options for Aidan should the swelling continue to increase. There was great uncertainty as to the best way to proceed with Aidan’s care. Dr. Jason suggested starting chemotherapy immediately. Our jaws dropped. Aidan was on a ventilator in the PICU. The conditions for chemo are far from ideal. Aidan’s risk of infection was high. Dr. Jason’s look was grave as he gently told us that Aidan’s risk of death was higher.
Blog entry dated January 7,2010 (Day 20 at Children’s Memorial): “I am hoping that one day soon, I will update with good news…I believe that I last updated you on the 5th when they took Aidan to surgery to perform the craniotomy and remove part of his cerebellum. After that surgery, he was moved to the PICU. Things were looking very good all day on the 6th (yesterday)…Aidan was responding to our voices and opening his eyes to look at us. All was well until about 5pm. His symptoms began again. Aidan was, once again, taken back to surgery. They took out more of the bone from the back of his skull and removed even more of the cerebellum (1/3 in total of the left hemisphere). They added 2 more drains so that fluid does not accumulate again in the posterior fossa. Aidan remains in the PICU. It was decided today that he will begin his chemo tomorrow. At this point, it is everyone’s hope that it will allow for a decrease in the cerebellar swelling so that Aidan can begin his long road to recovery. Thank you all for caring, for praying, for hoping. I will update you as I am able.”
#9 A Sigh of Relief
Nurses from the oncology unit, wearing masks and gowns and thick blue gloves to protect themselves from the poison, came to the PICU to administer Aidan’s first doses of chemo. When the chemo began to drip in Aidan’s veins, he was sleeping, heavily sedated. Aidan’s dad and I just sat by, watching. Helpless. Exhausted. Worried. Scared. Hoping that they would poison Aidan just enough to save his life.
Aidan would have another MRI the very next day to evaluate the status of his cerebellar swelling.
Blog entry dated January 9, 2010 (Day 22 at Children’s Memorial): “Thankfully, I am finally writing with a little bit of positive news. We are thankful that Aidan has stayed out of surgery for the past few days (you need to find the joy where you can). He had another MRI today which showed some improvement in that his cerebellum has relaxed a little bit more into the space that the surgeons had made for it in the last couple of surgeries. The drains are performing well and are keeping the CSF from increasing in the ventricles.
As I write this he is undergoing his 2nd day of chemo. Day 1 went very well…so far so good. Aidan remains in the PICU on a ventilator. We ask that you pray for his chemo to be a great success. We so appreciate all of your acts of kindness, prayers and well wishes.”
Aidan had completed four days of chemo, his first cycle of five. His chemo regimen was so toxic that it was just days later that his hair starting falling out. Aidan was completely bald in just a handful days. I remember using a lint roller to pick up all of the hair that accumulated on his pillow, mindfully navigating the many tubes that engulfed Aidan.
Aidan had another MRI the day after his chemo was complete. Dr. Alden asked us out into the hallway to review the films with him. He had Aidan’s last two MRI’s on the computer screen, side by side. At first it was hard to comprehend that they were both studies of Aidan as the difference was so drastic. The improvement was so drastic. I believe that was the first time that we saw Dr. Alden smile. We were thrilled, the three of us, celebrating a victory after days of defeat.
Aidan’s dad and I went back into Aidan’s room continuing to breathe a sigh of relief. We were sitting next to his bed when we noticed the monitor on the ventilator. The number of breaths was increasing. Aidan was breathing! Although not many and not strong, he was taking a few breaths on his own. We were so very worried, due to the amount of compression from the cerebellum, about the integrity of Aidan’s brainstem, his respiratory center. But, Aidan was breathing. There were many tears. Tears of joy!
It was a couple of days later when we were asked into a conference room to discuss plans to extubate Aidan. Dr. Jason, a social worker, and the attending physician of the PICU were present for this meeting. Aidan was continuing to take breaths over the ventilator and it was time to see if he was strong enough to breathe without the assistance. The PICU attending reminded us that Aidan had an aggressive brain tumor that had already metastasized. We nodded in agreement, acutely aware of our sweet boy’s diagnosis. She then asked, “What would you like to do should Aidan not be able to breathe on his own once he is extubated?” She paused and went on to state that it would be perfectly acceptable if we chose to do nothing. I was seething.
Aidan, our little dinosaur, had come so far. He was a 2 ½ year old little boy, fighting the hardest battle. His MRI demonstrated drastic improvement. He was starting to take some breaths on his own, proving that he had brainstem function. He was beginning to heal. Aidan had suffered a traumatic brain injury just five days prior that resulted in massive brainstem compression. To predict what his future neurological status would be was impossible at this time. It was too early.
We told them that if Aidan failed coming off the ventilator, they were to put him back on. And we would try again in a day or two to allow for more healing. We fully understood that Aidan’s chance of surviving his brain tumor was a small one. But it was a chance, nonetheless. He roared like a dinosaur just 21 days ago, prior to his initial surgery. He would overcome this. They would give Aidan a chance to survive. Dr. Jason nodded in agreement, in complete support of our decision.
Ron and I returned to Aidan’s room, completely exhausted, trying to wrap our heads around the conversation that we just had. We sat at Aidan’s bedside and as we watched our son take some feeble breaths we had to remind ourselves to do the same. Breathe, in and out.
Blog entry dated January 12, 2010 (Day 25 at Children’s Memorial): “I write again with positive news…
Aidan has completed his first round of chemo and tolerated it quite well. He now has 21 days off until round 2.
He started breathing over the ventilator (taking some breaths on his own) yesterday evening. That itself is excellent news…brainstem function is a good thing.
Aidan had another MRI this afternoon which demonstrated considerable improvement in all areas. We remain in PICU and, if all continues to go smoothly, will probably be here for the next handful of days before transfer back to the neuro unit. Aidan has a long road ahead of him and we ask for your continued prayers for him and the success of his chemo. We also ask for your prayers to bless Dr. Tord Alden and his neurosurgical team as he has truly saved our son’s life twice in the past few weeks.”
#11 Boy on Fire
On Aidan’s 33rd day at Children’s Memorial, he was able to be extubated successfully, without incident, after being on a ventilator for 15 days. Good things have happened over the past ten days. He had been weaned off of the steroids and high dose sodium/mannitol IVs for the brain swelling. He no longer required sedation. Dr. Alden had removed two of the three drains in his head. Only the extraventricular drain remained. It was pure bliss to be able to crawl into bed and hug him without being entangled in a mass of tubes.
Aidan remained in the PICU. He was been battling some very high fevers and some possible infection due to the immune suppression from the chemotherapy. Aidan had reached nadir and we expected to see some rebounding of his white blood cells throughout the next week. Nadir means low point. It is the point at which white blood cell and platelet counts fall to dangerously low levels. When chemotherapy is given it not only affects the cancer cells, it also affects the normal cells of the body. These effects particularly occur on normal cells that divide rapidly such as, the hair, the lining of the mouth, the cells lining the intestinal tract and the blood cells (white and red blood cells as well as platelets). This is why people have side effects from chemo. The blood counts return to normal after the body’s feedback system has told the stem cells in the bone marrow to increase production and begin making new cells. The nadir time is usually about 10 or so days after treatment, although this is variable depending on the drugs given. The concern during the nadir time is that the body’s first line of defense against infection, white blood cells and the platelets, which help to clot the blood, are low leaving a person more susceptible to infection and bleeding. The next dose of chemotherapy is given only after a person’s blood counts have left the nadir and recovered to a safe level. Chemo is cumulative. The more chemotherapy one has, the longer it takes these precious cells to rebound.
Aidan’s fevers were awful. They went on for days. Days. They were high and they were scary. They were giving him Tylenol around the clock. His fever would break for only a short while before it climbed back up again. Aidan was placed on a cooling blanket multiple times to try to get his body temperature down. That was the worst. The image of Aidan shivering uncontrollably on that cooling blanket is burned into my mind. The doctors were not entirely certain why the fevers wouldn’t cease. Aidan was on prophylactic antibiotics due to the EVD in his head and that should’ve taken care of any infection. They hypothesized that the fever was centrally mediated. The brain sustained great trauma, it was possible that the temperature control center in the brain just wasn’t functioning correctly. Aidan’s dad, a pharmacist, suggested that perhaps the fever was drug induced. Certain antibiotics may cause fevers…
Blog entry dated January 22, 2010 (Day 35 at Children’s Memorial): “Aidan remains in the PICU…He has been battling some very high fevers and infection likely due to the immunosuppression from the chemo. We expect to see some rebounding of his white blood cells throughout this next week. Some very positive things have happened over the past 10 days.
Aidan was able to come off of the ventilator 2 days ago without incident. He has been weaned off many of the medication for the brain swelling. His neurosurgeon has removed 2 of the 3 drains in his head. They were able to remove his arterial line and his catheter. The removal of tubes is very exciting (clearly, we have been here too long). Aidan is tolerating his increasing NG tube feedings well. However, he continues to be on IV support so that his nutritional needs are met. Hopefully, the next time I update, we will be back to the neuro/oncology floor as now there is little reason to keep him in the PICU.”
It was at this time that we sat down to speak with Dr. Jason regarding Aidan’s next round of chemo. Aidan would have another MRI prior to the next chemo cycle to evaluate disease status. As I have shared previously, Aidan had the most aggressive subtype of medulloblastoma. It was decided that if the tumor spread remained relatively unchanged or, hopefully, regressed, Aidan would begin his second round of chemo within the next couple of weeks. The cruel reality is that medulloblastoma can continue to grow despite chemotherapy. We had the difficult discussion that if there was to be a significant increase in tumor spread, it is unlikely that we would move forward with further treatment. It would be barbaric to subject Aidan to further treatments. We had so many heart wrenchingly difficult conversations in that room. We chose to remain hopeful that the scan would be reflective of the positive response we saw immediately after completion of his first round of chemo.
Blog entry dated January 28, 2010 (Day 41at Children’s Memorial): “Aidan is having his MRI tomorrow (Friday) morning. We are hopeful and optimistic that the results will be good. Please keep us in your thoughts and prayers. I will be in touch.”
#12 Joy, with a Side of Bacon
Aidan had a full brain and spine MRI on January 29th, his 42nd day at Children’s Memorial. Most of you, blessedly, have not had the anxiety riddled experience of waiting for MRI results. Those days are torture for parents of children with cancer. The MRI is the crystal ball, so to speak, it allows you the slightest glimpse into the future. Parents of children with cancer are typically told only one of three things regarding the findings on an MRI. “There is no evidence of disease.” The parents rejoice. Or, “The MRI revealed no significant change. It remains stable.” This leaves room for hope. Parents may continue to hope for a cure. Or, “There have been significant changes. There is evidence of disease spread.” Parents experience mind-numbing pain. Yes, waiting for MRI results is torture.
Dr. Jason came into Aidan’s room early the following day to share the MRI findings: The cerebellum has shown a moderate decrease in tumor burden. As far as the spinal cord, there was increase in signal intensity around the initial tumor site. Dr. Alden, Aidan’s neurosurgeon, said that it is not uncommon to see this type of image postoperatively. Or, it is possible that it may be an infection as it is in the location where the 2 drains were placed. Or, it is possible that it continues to be evidence of tumor spread. Dr. Jason was pleased with the evidence of tumor regression and stated that the next round of chemo will be telling as to the status of the spinal involvement. He went on to state that Aidan would begin his 2nd round of chemo in the morning. The relief that we felt upon hearing this news was immense. We were overjoyed that there was tumor regression. And we were so happy that Aidan would move forward with treatment. That he would be given a chance for a cure. That he would receive more poison tomorrow. The things that cancer parents are grateful for…
Aidan was transferred out of the PICU back to the neuro unit. Children with cancer are typically placed on the oncology ward. However, Aidan still had the extraventricular drain inserted in his brain. If a child has an EVD they can only be in one of two places, the PICU or the neuro unit. Most rooms on the neuro unit were shared. Our roommate, a young boy named Alexander, was being treated for an uncontrolled seizure disorder. He was at Children’s to begin a ketogenic diet, a special high-fat, low-carbohydrate diet, that helps to control seizures in some people with epilepsy.
We started discussing the joys of a ketogenic diet. This diet allows for bacon. Daily. Who doesn’t love bacon? Bacon, and all of its salty, smoky deliciousness, is a little slice of heaven. And as I sat on the foot of Aidan’s bed preaching that everything was better with bacon, it happened. A giggle. Aidan’s dad and I looked over at Aidan and he was smiling. He was smiling! We had not seen a smile or heard a sound from Aidan in 42 days. The cerebellar mutism had left him unable to speak or express himself since his initial tumor resection on December 21st. That little giggle was the most beautiful sound, the sweetest music to our ears. It was shortly after that the neurosurgical team was making their rounds. Dr. Alden had asked how Aidan was doing and we shared that we saw a smile a short while ago. I then proceeded to say “Bacon!” Aidan began giggling. Dr. Alden began giggling. Dr. Gump, some neurosurgical residents and handful of nurses then crowded in the room. Again, I said “Bacon!” Again, Aidan giggled. Everyone giggled. I remember their faces, the joy in the faces of his caregivers. They were celebrating this small milestone, celebrating the wonder of a boy whom they had come to care for.
I can still feel the joy in that room. There was so much joy.
Blog entry dated February 1, 2010 (Day 45 at Children’s Memorial): “We have learned the MRI results. There was evidence of tumor regression and Aidan will be able to begin round 2 of chemo tomorrow. I would have never guessed that I would be so happy to hear that my son could have chemo.
More good news…we have a new “address.” Since I have last updated, we have been moved from PICU back to the neuro unit.
Physically, we are continuing to see good improvement in Aidan. He is sitting up with assistance and eating some small meals of pureed baby food. He continues to be mainly fed via NG tube for his nourishment. Communication is still lacking. However, he is starting to be more expressive. Today we have even seen a smile and a little giggle! We thank each of you for your well wishes and ask you to continue to keep Aidan in your thoughts and prayers as he has a long tough road ahead. We are just so very thankful that he can continue down that road…”
#13 A Delicate Balance
Aidan had finished his second round of chemo on February 11th, his 55th day at Children’s. He sailed through those four days without any problem. It was around this time that the cause of Aidan’s fevers was identified. Imipenem, a broad spectrum antibiotic, was the culprit. After weeks of battling fevers, multiple visits from infectious disease, and ruling out all other causes of fever, the doctors finally heeded Ron’s earlier suggestion and changed Aidan’s antibiotic coverage. The fevers disappeared in two days. Father knew best.
Aidan was becoming slightly more efficient at eating, chewing and swallowing. We were so excited when he was able to eat part of a cookie, a Lorna Doone shortbread cookie. Aidan had quite the smile after that treat. It was a big feat for him. Aidan’s brain tumor was located in the cerebellum. During his multiple surgeries the neurosurgeons had to remove about a 1/3 of the left hemisphere of Aidan’s cerebellum. This is the region of the brain that plays an important role in motor control. The cerebellum is responsible for balance, coordination and precision of movement. Damage to the cerebellum does not cause paralysis, but instead produces disorders in fine movement, equilibrium, posture, and motor learning. It is mind boggling at how much coordination it takes to chew and swallow. Aidan was relearning how to use his tongue. The little things we all take for granted.
He continued to make good progress in physical therapy. He was sitting with support and was beginning to put a little weight through his legs. Seven plus weeks in bed and massive cerebellar trauma had left little Aidan unable to walk. He had very little strength and very delicate balance. He would need to relearn how to walk. Aidan’s physical therapy would be extensive.
Things were moving along quite well. The only thing keeping Aidan in the hospital was the presence of the extraventricular drain that was in his ventricle. That EVD was the bane of our existence. However, it was a necessary evil. We were waiting for the opportunity to have that drain internalized via a shunt surgery. Aidan had low pressure hydrocephalus which is not too common. It had been quite a challenge to move his drain to a positive pressure which is ideal when placing a shunt. To complicate matters, the neurosurgeons had fleetingly small windows of opportunity to perform such a surgery. You see, they could not perform this surgery while Aidan was immune-compromised from the chemo because of the risk of bleeding and infection. We were anticipating the shunt surgery in the next couple of weeks after Aidan’s blood cells rebounded from his past cycle of chemo.
Blog entry dated February 12, 2010 (Day 56 at Children’s Memorial): “Aidan has finished his 2nd round of chemo yesterday morning. He tolerated it quite well. His fevers have significantly decreased over the past 2 days. We were able to change some of his antibiotic coverage as we were concerned that was where the fevers may have been coming from. So far that change has proven beneficial. Aidan is beginning to be more efficient with eating. He even ate a cookie the other day! He continues to make great progress in physical therapy, sitting with support and beginning to put a little weight through his legs. Moving forward, we are anticipating that in the next couple of weeks (after Aidan’s blood cells rebound from the chemo) he will have surgery to internalize the drain that is currently in his ventricle (shunt surgery). We are hopeful that some reconstruction of his skull can take place at that time.
Another MRI will be performed in the next few weeks to see the progress of his chemo treatments. Then he will begin his 3rd cycle. If all of the above go well, we will probably be able to leave Children’s in late March. Depending on his strength at that time, we may be spending some time at Marianjoy (a rehabilitation facility), one step closer to home.
Please continue to keep our sweet Aidan in your prayers. I will continue to keep you updated as I am able. Thank you for all of the Valentines, Wheaton Montessori School!”
Aidan was continuing to make good progress, both physically and in spirit. He was getting stronger each day and his movements were becoming more purposeful and coordinated. Aidan was beginning to share fist bumps and high fives with the neurosurgical team when they came in to see him on their morning rounds. Finally, his eye movements were becoming more normal and he was beginning to track objects. The cerebellum is also responsible for coordinating eye movements. He couldn’t express it, but I’m sure that Aidan was experiencing some double and/or blurred vision for the past couple of months. Feeding continued to be a little bit of a struggle. It was exhausting for him.
It had been very slow going, but we were beginning to see a little bit more of Aidan each day. That little sparkle was back in his eyes and it was awesome to see. He was back to his old charismatic self, flirting with his nurses with his little smile. Nurse Mary was one of his favorites. Mary was always assigned to him. We felt sorry for the poor girl, always getting stuck with us. She relayed one day that she chose to care for Aidan. She would sign up for him. Aidan and Mary adored one another.
Aidan was quite a Casanova with the ladies at such a young age. The summer before he was diagnosed, we spent many days at the pool. I remember one day in particular, Aidan walked away from me and stepped right into the middle of five preadolescent girls. He “joined” their conversation, nodding his head in agreement to Lord knows what. They were gushing over him. They began to play catch with him for quite some time. He completely forgot all about his mom. I just sat there in awe of my toddler son captivating these older girls. I relished in the fun he was having. As we were leaving the pool, those same girls were sitting at a picnic table across the way. They yelled a good bye to him. Aidan, in his hat and sunglasses, nonchalantly looked their way, waved his hand at them and then proceeded to strut away. He was the coolest kid.
Nurse Mary, who came to be known as one of Aidan’s girlfriends, had a great sense of humor. We were going stir crazy in that hospital for all of those weeks. Across the street was a place called “America’s Dog.” They have a challenge that if you eat 18 of the 21 types of hot dogs you get a free meal and a picture of yourself in a hot dog costume. In order to bring some much needed happiness to Aidan, his uncle Matt, Aidan’s best buddy, took the challenge. He convinced the manager at America’s Dog to let him wear the hotdog costume across the street if he were to complete it. For those next two weeks, nurse Mary would diligently keep track of Matt’s hotdog consumption. She would write Matt’s statistics on the dry erase board in Aidan’s room. The dry erase board is typically reserved for nurse’s names, doctor’s pager numbers, lab values, important things. Nurses and doctors would stop by just to give Aidan a high five and check the board to see how the challenge was progressing. Matt completed the challenge in only two weeks, eighteen hotdogs in two weeks! That was a lot of hotdogs. That was a lot of love for his little buddy. It was Aidan’s 78th day at Children’s when Matt, dressed as a hotdog, walked down the hallway of the neuro unit. Aidan’s smile was never bigger. One of the best things about that day was seeing Mary so excited about the joy that she saw in Aidan’s face. I will always remember that moment.
Blog entry dated March 3, 2010 (Day 75 at Children’s Memorial): “Aidan has been making great progress. It is slow going, but he is getting stronger both physically and in spirit. His neurosurgeon is planning for his shunt surgery tomorrow (Thursday). We anticipate a full brain and spine MRI early next week to evaluate tumor status and expect chemo to follow shortly thereafter. Dare I say it? If all goes well and he is internalized successfully, we may be going to rehab the third week of March. It is truly amazing how far little Aidan has come. He is quite the fighter! It looks like we are going to have a busy week. As always, I will continue to keep you updated with Aidan’s progress.”
Dedicated in Memoriam: Mary T. Bussiere, August 10, 1984 – August 5, 2012. May she rest in loving peace.
#15 He Speaks
Aidan had his shunt surgery on March 4, 2010. It was his fifth surgery in 2 ½ months. They were able to successfully internalize the extraventricular drain that had been so bothersome for all those weeks. After the shunt surgery it seemed like Aidan just blossomed. He was doing exceptionally well. Aidan was more engaging and was blessing us with many smiles and giggles. Thankfully, he was slowly coming out of the cerebellar mutism that had plagued him for the past couple of months. Those connections were slowly getting reestablished. Aidan was even becoming more successful with feeding. Physical therapy was very difficult for him. Aidan would be exhausted after a brief visit. But he was noticeably stronger with each session. Aidan was doing some serious healing!
Now that Aidan was free from the EVD, there wasn’t any reason for him to remain on the neuro floor. He was transferred to the oncology unit, a more appropriate place for a cancer patient. This transfer seemed like such a milestone for him considering his first two cycles of chemo were in the PICU and the neuro unit, respectively. We were a little sad to leave the neuro unit after spending so many weeks there. Those nurses and the neurosurgical team became part of our extended family. Much to our surprise, we weren’t given the chance to miss them. Aidan had won their hearts. He was constantly “entertaining” his old nurses in his new room in the oncology ward. The nurses from neuro and the PICU visited Aidan frequently. He had quite the following.
Aidan had an MRI on March 8th to evaluate the progress that had been made with the previous chemo cycle. It demonstrated even more tumor regression than the last MRI. Our little dinosaur was roaring! Aidan’s body was raging war on that brain tumor, the evil beast. Everyone was thrilled with the results and we were all able to breathe another sigh of relief. He began his third cycle of chemo two days after the MRI. Once Aidan was finished with this chemo cycle, there wasn’t any reason to keep him hospitalized. We anticipated being released to Marianjoy, a rehab facility, in the coming week.
It was on March 10, 2010, Aidan’s 82nd day at Children’s Memorial, when we finally heard him speak. It was Aidan’s first spoken word since December 21, 2009. I was sitting next to him, in his hospital bed. We were in the middle of reading a story. He stopped me and gently put his hand on my left wrist. He then looked up at me with his crooked smile as he struggled to form his words. And in the tiniest raspy voice he said, “Mom.”
#16 Home Sweet Home
Aidan tackled his third round of chemo like a champion. Dr. Jason came in the next morning to sign off on Aidan’s discharge papers, he gave him a high five and said good bye. Aidan was released from Children’s Memorial on March 17th after 89 days in the hospital. We didn’t need green beer or a fancy parade to celebrate this St. Patrick’s day. Our boy was leaving the hospital and I was one happy Irish lass. We had our own kind of parade, Cancer Family style, an ambulance transport to Marianjoy. It was planned that Aidan would spend 4-6 weeks at Marianjoy for inpatient rehab and be transported back and forth to Children’s for his chemotherapy treatments.
Marianjoy is located less than a mile from our home. So very close to Aidan’s own books and toys, a comfortable bed and good coffee. We understood that Aidan needed extensive rehab. We didn’t understand the need to keep him institutionalized. Shortly after our arrival at Marianjoy, we were met by a resident physiatrist. This young man came into Aidan’s room carrying a stack of pages nearly four inches thick, Aidan’s file from Children’s. I still feel sorry for that poor guy. He wanted some history on Aidan and began flipping through the pages. It was a tome! He asked, “What were Aidan’s symptoms prior to diagnosis?” I responded that he had vomited intermittently for five days and that he stumbled just briefly the day before we brought him to the ER. More flipping of pages…The resident asks on, “What type of tumor does he have?” I say, “Anaplastic medulloblastoma, M stage 3.” He nods and proceeds to look through more pages before asking, “Exactly how many surgeries did he have?” I looked at him empathetically and said, “Five, the initial tumor resection, an EVD insertion, two craniotomies including partial resection of the left hemisphere of his cerebellum, and placement of a ventriculoperitoneal shunt.” It was at this point when I asked, “Would you like the cliff notes version?” He was relieved.
It was only after we finished sharing the details of Aidan’s course of care when I requested that Aidan be promptly discharged. The doctor looked quizzically at me, like he didn’t understand what I had just said, like I was a crazy person. I again told him that I wanted Aidan released from inpatient care and be allowed to participate in their day rehab program. I went on to ask him if he could give me a sufficient reason to keep Aidan institutionalized. He couldn’t. That young doctor learned a valuable lesson that day, one should never underestimate a Cancer Mom. After spending just a couple of nights at Marianjoy, Aidan was released to come home.
We were set up with a home health care agency that would supply us with what Aidan would require at home. A corner of our kitchen was turned into a medical supply zone. That corner contained syringes, needles, alcohol swabs, Zofran for nausea, Neupogen to help stimulate Aidan’s white blood cell production after he tanked post chemo, multiple IV tubing sets for the IV nutrition that Aidan would receive during the night. There were caps for his PICC line, heparin that would need to be administered daily to keep that line clear from clotting, multiple dressings, an IV pump, NG tubes, vials of saline…. I was Aidan’s nurse at home. This is the life of a Cancer Parent.
Blog entry dated March 24, 2010: “Hello dear friends, I am writing you from our family room couch. Yes, you read that right. Aidan is HOME! He was released on March 17, after 89 days at Children’s Memorial. He was transferred to Marianjoy for inpatient rehab. From the moment we walked into Marianjoy, I requested that we be promptly discharged. Needless to say, they were hesitant. However, they were unable to give us sufficient reason for him to be institutionalized. He will participate in a day rehab program at Marianjoy.
Aidan is doing well. However, as his strength increases so does his frustration level. He needs help doing things that he was once able to do unassisted prior to becoming sick. He is often refusing help while sitting and eating. It is maddening for everyone. I keep telling myself that his strong will is what will help him get through treatment. So, we just have to deal with the frustrations in the meantime.
We were at Children’s today to meet with the stem cell transplant team and road map the next couple of months. Aidan had his weekly chemo injection and a transfusion. We love the marathon days at clinic, 11am appointment and out the door at 5:30pm, just in time for rush hour. The road map: Aidan’s white blood cell count should rebound within the next 5 days or so. He will have a break for 4-5 days then he will be given medicine to further stimulate white cell production prior to harvest. If all goes well, we anticipate stem cell harvest in the second week of April. Harvest happens over 2 days and his 4th chemo cycle will immediately follow. So, he will have an inpatient stay for about 6 days at that time. I will update you with future happenings.”
#17 Harvest Time
Aidan was doing wonderfully! We were enjoying our time at home immensely. It was so very nice to sleep in our own bed, enjoy good coffee and be able to shower sans flip-flops! We were grateful for the littlest things, the creature comforts of home. We were grateful for the big things, the fact that our beautiful boy was still with us. We were blessed. The landscape of our family had changed dramatically over the past few months. Our lives were unrecognizable to us from the ones that we had lived prior to December 19, 2009. It would take time, but we were slowly adjusting to our “new normal.”
Aidan had been making good progress every day in rehab at Marianjoy. We were very fortunate to live nearby. Aidan would have speech and occupational therapy in the morning for two hours. We would take a break and go home for lunch and a much needed nap. He would then go back for an hour of physical therapy in the afternoon. It was intensive therapy and it was exhausting. We were so proud of Aidan, he was working really hard. I had tears streaming down my face on April 2, 2010 as I witnessed Aidan take three steps in physical therapy. Those three steps were his first since December 21, 2009. I was watching Aidan walk for the very first time all over again. And it was amazing! He was amazing.
Aidan was admitted to Children’s Memorial on April 4th to undergo a stem cell harvest. His fourth cycle of chemo would immediately follow. He would spend six days in the hospital. Harvest would happen over two of those days.
It would be necessary for Aidan to have a stem cell transplant at the end of his chemotherapy regimen. Medulloblastoma is a very aggressive brain tumor and requires a high dose chemo protocol. This high dose chemo would slowly destroy Aidan’s bone marrow and therefore, his ability to produce his own blood cells (the cells that are necessary to fight infection, prevent bleeding, etc.). A stem cell transplant is the infusion of healthy stem cells into the body to replace damaged or diseased stem cells. Aidan’s transplant would be autologous, meaning he would use his own healthy stem cells for the transplant. His healthy stem cells would be extracted from his blood during harvest and frozen until the completion of chemo. At that time, those healthy cells would be “transplanted” back into his body via a transfusion in effect rescuing his immune system.
The first step in an autologous stem cell transplant is a stem cell harvest. Aidan was given a drug called Neupogen which forced the stem cells out of the bone marrow and released them into circulation in order to be extracted. Stem cell harvest was a grueling process. It involved inserting a central line into Aidan’s jugular vein. This line was huge, like a small garden hose. It was difficult to look at. Aidan was then hooked up to an apheresis machine. This machine looked like something you would see in an episode of “Lost in Space” from the 1960’s. It was a large archaic looking computer with big lights and dials. This device filtered Aidan’s blood, extracted the stem cells, and returned the blood back into his little body.
The thought of a stem cell transplant looming over us in the near future made us incredibly anxious. It would be a tremendous hurdle for Aidan. A transplant would involve a brutal cycle of chemo immediately prior to the infusion of the healthy stem cells. Brutal is actually too kind a word. Stem cell transplants are dangerous and pose significant risks of complications including organ injury, infections, infertility, the development of new cancers, death.
We would constantly need to remind ourselves to take one day at a time. One day at a time.
Blog entry dated April 3, 2010: “Aidan is good! We are slowly adjusting to what we call our “new normal”.
Aidan will be back at Children’s for a six day inpatient stay beginning this Wednesday 4/7. He will undergo stem cell harvest on Wed and Thurs. Thurs night he will start his pre-hydration fluids and his 4th cycle of chemo will start on Fri. Hopefully, we will be heading back home on Monday 4/12. Aidan is making good progress every day. We are so proud of him. Yesterday in physical therapy, he actually took 3 steps, his first since December 21st! Thank you all for your prayers and acts of kindnesses (making dinners, bringing groceries, running errands, etc). It is clear that Aidan has touched many people’s hearts and we thank all of you for touching ours.”
#18 Revolving Door
Aidan’s stem cell harvest went well. The transplant team was able to obtain a very good collection of stem cells. They had extracted enough cells for more than one transplant if needed. We had hoped that Aidan would successfully engraft with one, but a back-up was comforting. After harvest, Aidan completed his fourth of five cycles of chemo. He was discharged after seven days in the hospital.
Geoffrey Chaucer, writer of “The Canterbury Tales”, wrote the famous English proverb “There is an end to everything, to good things as well” in 1374. True words. Aidan was doing beautifully. He was healing and making excellent progress in physical therapy. Aidan’s little spark was back and he was happy. He sailed through his chemotherapy treatments without any problem. And then, overnight, the good came to an end.
*This 18th installment of Aidan’s Cancer Story could have easily been titled “Side Effects101”. I will caution you that what you are about to read is unpleasant. Side effects of chemo are nasty. Cancer treatment is brutal and it ravaged Aidan’s little body…
Aidan’s last round of chemo was rough on him. Very rough. One of his chemo infusions, cyclophosphamide, is toxic to the bladder. Aidan began having visible blood in his urine. He was sent home with IV fluids to be given continuously to flush out his bladder. We were told that hemorrhagic cystitis could last two weeks or two months. We were remaining hopeful that it would resolve well enough so that Aidan could move forward with his 5th cycle of chemo in a couple of weeks. In addition to the hemorrhagic cystitis, Aidan had acquired C. diff (Clostridium difficile), a nasty stomach bug. It is a very scary bug for an immune compromised patient. C. diff causes severe diarrhea and other intestinal disease. It takes over when competing bacteria in the gut flora have been wiped out (both chemotherapy and antibiotics can kill off the “good or healthy” bugs in the GI tract). Poor Aidan experienced terrible stomach cramping and multiple episodes of mucousy diarrhea. The diaper rash was unlike anything I had ever seen! Another lovely side effect of cumulative rounds of chemotherapy is mucositis. Mucositis is a painful inflammation and ulceration of the mucous membranes lining the digestive tract from your mouth to your bottom. Enough said. Aidan was miserable. We were helpless.
Aidan suddenly became very busy. He was released from the hospital on Tuesday afternoon (April 13) after completion of his stem cell harvest and fourth round of chemo. I brought Aidan back through the ER on Wednesday night (April 14) after changing a diaper that had more blood in it. He was readmitted and started on fluids. Aidan was then released on Thursday evening (April 15) after being given fluids, blood and a unit of platelets. He had labs drawn by our home health nurse on Friday morning (April 16) which revealed that his platelets were low again…We were off to the day hospital at Children’s for another unit of platelets. It was Sunday (April 18) when we brought Aidan back to Children’s. He was admitted again that afternoon. The two previous days were awful for him. He had been in a considerable amount of pain and was unable to keep his medicine down, let alone any nutrition. They started him on a morphine pump for his pain and he was resting comfortably. Aidan had reached nadir and was neutropenic, his white blood cells were nonexistent. There is no ideal therapy for neutropenia. It just takes time for one’s body to recover and begin making more white blood cells. Once Aidan’s counts recover, the awful side effects would improve. We were hopeful that this would be a short stay.
Blog entry dated April 18, 2010: “Aidan has been busy…I will start with the good news. Unfortunately, it’s true, not so good news follows. Stem cell harvest went well. They were able to get a very good collection. Another positive note, Aidan has completed his 4th cycle. He only has one more and then on to a myeloblative high dose chemo regimen immediately prior to his stem cell transplant. Now for the not so good…this past cycle was very rough on Aidan. One of his chemo infusions is bladder toxic and Aidan has been having visible blood in his urine. He has also acquired a very nasty stomach bug (c. diff for all you medical folks). A scary bug for an immunocompromised patient… I am writing from Children’s. He was admitted again this afternoon. The past 2 days have been awful for him. He has been in a considerable amount of pain and has been unable to keep anything down. Thankfully, they are giving him morphine for his pain and he is resting comfortably. I am hopeful that his doc will start him on IV nutrition tomorrow. We are hoping to quickly resolve some of these problems and that this will be a short stay.”
#19 The Crystal Ball
Aidan was discharged on April 30, 2010 after an unexpected thirteen day hospital stay. We were looking forward to spending some nice quiet time at home. It wouldn’t be long before Aidan would be back at Children’s for his fifth cycle of chemo. We anticipated that would happen in the second week of May. During the months of Aidan’s treatment we often joked about getting a place in the city as we were there much more often than we were at home.
Thankfully, Aidan was feeling much better. His belly was slowly improving, no more cramping and much less poop. This made everyone happier. He continued to hemorrhage from his bladder, although it seemed to be less. Aidan was given platelets daily, sometimes twice a day, to help control the bleeding. Platelets are fragments of bone marrow cells that are found in the circulating blood and are critical in stopping bleeding. Platelets rush to the site of an injury and work to form a blood clot, which is necessary to stop the bleeding. Normally, there are billions of platelets in the blood; however, certain chemotherapy drugs destroy the cells in the bone marrow that produce platelets. A low platelet count typically occurs 6 to 10 days after chemotherapy and continues for several days before the number of platelets in the blood increases to an adequate level. This hospital stay was brutal. Aidan was on a morphine pump to control the pain from the mucositis and from passing the blood clots. It was awful, we could only sit and wait. Sadly, it just takes time for those precious blood counts to recover. Those precious cells help to heal the wounds caused by chemotherapy.
This thirteen day hospital stay provided us a little glimpse into Aidan’s future. It had taken Aidan much longer to recover from this last cycle of chemo. This becomes common after enduring multiple rounds of chemotherapy. In previous cycles, his white blood cell counts were at zero for 5 days or so. With this fourth cycle, it was day 15 before we started to see a few white cells. And it was scary. We were narrowing in on stem cell transplant and we were bracing ourselves for the brutality yet to come.
We caught another glimpse into the future. Aidan had another MRI scan prior to his discharge and it was encouraging. Aidan’s brain looked remarkably better. His spine remained unchanged. There had been a questionable area in the spine with previous studies. It remained uncertain whether it was post-operative changes, scar tissue from the multiple surgeries and infection, or tumor spread. Typically, if you see good response to chemo in the brain, the spine usually improves as well. That would lead one to believe that the area was more likely to be scar tissue. However, when you are dealing with an aggressive tumor, the last thing you want to do is make assumptions and be led blindly. The MRI after Aidan’s 5th cycle and the myeloblative chemo prior to stem cell transplant will be telling as to Aidan’s next course of care if no further improvement was seen.
The treatment for medulloblastoma is surgical resection, chemotherapy, and full craniospinal radiation. We would need to make some difficult decisions as to radiation treatment in the next few months. Radiation therapy in a young child can cause some significant lifelong effects. Aidan would have cognitive problems. He would experience difficulties in learning and memory. Children who have been treated with cranial radiation have a decreased intelligence quotient (IQ). Aidan would likely have hearing loss and endocrine problems due to radiation of the pituitary gland. He would probably have some skeletal problems due to the spinal radiation, including a short stature and possible curvature of the spine. Children treated with radiation have an increased risk of developing secondary cancers later in life… Sadly, this was the one of the “best” treatments available to Aidan.
We were just thankful for the day. We were thankful that Aidan had been showing good response and we hoped that we would be blessed with wisdom to guide us in making good decisions for his future care. Sometimes it was very hard to focus on just one day at time.
#20 The Spring of Hope
“It was the best of times, it was the worst of times… it was the spring of hope…” -Charles Dickens, A Tale of Two Cities, 1859.
Spring had arrived, the season of new life and new beginnings. It was the spring of hope. Our family’s spring of hope. Aidan had a recent MRI scan that demonstrated improvement. It was encouraging, promising. We had hope for a cure for our sweet boy. Aidan was such a sweet boy! During his months in treatment, we were constantly amazed by his strength, his resilience. He had been through hell, yet he was able to laugh and be happy.
The first two weeks of May found us living the best of times during our worst of times. Aidan was home and he was feeling well. Our family was enjoying some normalcy. Aidan would be back at Children’s in mid-May for his fifth cycle of chemo. We would take advantage of this brief respite. Aidan was even able to enjoy a couple of fun outings with family and friends.
Aidan regularly attended a music class. He had been enrolled in this music class since he was only a handful of months old and it quickly became one of his favorite pastimes. It offered him a chance to dance, sing and play music. He enjoyed it immensely. Miss Christy, the director of the music program, made it so much fun for the kids. Aidan really liked Miss Christy. One Halloween she dressed as Minnie Mouse and took a picture with the class. We printed out the picture, put it in an old wallet and gave it to Aidan. He would open up that wallet and give Miss Christy a kiss every so often. We were so glad that he was able to attend one of her classes that first week of May. It would be his last music class. And although he wasn’t strong enough to dance by himself, I picked him up and we sang and danced together. Me and my boy, we were enjoying the best of times.
On Mother’s Day we were invited to a barbeque hosted by my brother, Aidan’s godfather. Our entire family was there. Aidan’s cousin, Megan, was just a year and a half older than Aidan. Typically during family gatherings, those two would be playing and running circles around the room. It pained me to see Aidan, in a wheelchair, unable to run with his cousin. This particular Mother’s Day was bittersweet. It was tinged with an aura of fear. I was so very blessed that my son was still there with us, that he had already overcome such tremendous obstacles. I was thankful for that positive MRI scan that offered us some hope. I was also acutely aware that with cancer there is no certainty. You could try to ignore it, the invisible beast, but you always knew it was there, even during the best of times. This photo was taken by Aidan’s godmother on that Mother’s Day. It was the last photo that Aidan and I took together.
Blog entry dated May 13, 2010: “I write from Children’s Memorial. Aidan is in for his 5th round of chemo. Currently, he is in the procedure suite for his routine audiogram (one of the chemo agents he receives is ototoxic, so his hearing is monitored closely). Aidan has had a couple of very good weeks at home. He has been happy and feeling really well. We were able to have a couple of fun outings, Mother’s Day at his uncle Dan’s and he was even able to attend his favorite music class. It’s nice when we can provide some normalcy for him. We will be in the hospital through the weekend. Hopefully, we will not experience any complications this time and go home on Sunday. Aidan’s 3rd birthday is on Monday and we would love to celebrate at home. Please keep sweet Aidan in your prayers. I will be in touch.”
#21 Coffee Grounds
Aidan’s fifth cycle of chemo went as planned. He had a four day inpatient stay and sailed through it. Thankfully, it was uneventful this time. We were happy to be home to celebrate Aidan’s third birthday on May 17th. It was a blessing to have a little more time at home with our sweet boy. And then Memorial Day came. It was a beautiful sunny morning. Aidan was settled in our family room watching Mickey Mouse Club. I had just finished grinding some beans to make coffee. As I walked into the family room, Aidan vomited. And not just any vomit. This vomit resembled what I had just used to make my morning brew. It was coffee ground vomitus. My husband and I looked at each other in horror, knowing exactly what this meant.
Coffee ground vomitus is a classic sign of upper gastro-intestinal bleeding. The molecules in red blood cells contain iron. When that iron has been exposed to gastric acid, it becomes oxidized. This reaction causes the vomit to take on the appearance of coffee grounds. The chemotherapy treatments had burned a hole in Aidan’s stomach and it was bleeding. This required urgent care.
We called Children’s and had the oncologist who was on-call paged. We told him that Aidan had a GI bleed and that we would be bringing him in through the ER. Being seasoned Cancer Parents, we already had a bag packed, ready and waiting at the front door. We knew an inpatient admission was imminent. We poured our coffee into to-go cups, grabbed our bag, and left for the hospital.
When you have a child with cancer, you receive the VIP treatment when visiting the emergency room. You always phone ahead and inform the oncologist that you’re on your way. The oncologist would alert the ER staff to expect your arrival. The ER at Children’s was always busy with bloody, sniffling, vomiting, coughing children everywhere. It was a petri dish of nastiness and no place for an immune compromised cancer patient. Upon arrival, an oncology patient was taken to triage ahead of everyone else and then you were brought to a private room. You would then wait there for the doctor to come to see you. The perks of being a Cancer Family…
Once we arrived in the ER, they drew a blood sample. When a patient is actively bleeding, they run a lab to test clotting times. Aidan’s were double what they should be. This means that it was taking his blood a lot longer to clot. Of course, this put him at risk of bleeding, of hemorrhaging, anywhere in his little body. He would need to be closely monitored. Aidan was transferred to the PICU. No one had given us a clear reason as to why the clotting time was elevated. We would have to wait for more tests. In the meantime, Aidan received his cocktail of transfusions, more blood and platelets.
Blog entry dated May 31, 2010: “Again, I write from Children’s. Aidan was admitted into the PICU this afternoon. Upon waking this morning, he was vomiting blood. Already today, they have transfused blood and platelets… His chemo cycle a couple of weeks ago went well. He will have another full MRI on 6/14 and will head to stem cell transplant shortly thereafter. Please keep Aidan in your prayers. We are hoping for a very short stay here in the PICU.”
Aidan spent the night in the PICU. The following morning we learned that two lab results documenting Aidan’s clotting times were inaccurate. They were, in fact, normal. We weren’t sure what had happened with those tests. We imagine that they were run off the same sample and it’s possible that some heparin contaminated the line. By the time this information was relayed to us, we were too exhausted to be upset. We were just thankful that we were able to breathe a tiny sigh of relief that nothing more serious was wrong.
To say that Memorial Day was a mess would be an understatement. There was never a dull moment when Aidan was in the hospital. Shortly after we arrived in the PICU, Aidan spiked a high fever. He was immediately put on antibiotics and we would await blood cultures. It was later that night when Aidan ripped out his PICC line. This is the central catheter that was placed in his arm for IV access. He would be brought to interventional radiology the following morning to have it replaced. In the meantime, that meant that they would need to start an IV line on him. Aidan was miserable. As I reflect back on this time, I just feel sadness. Sadness for Aidan, of course, for all that he endured. The horror that he lived in those seven months was more than most people encounter in a lifetime. What I find incredible is that these events became routine for us, like brushing our teeth. This was our normal and after a while it didn’t even phase us. That is sad.
Thankfully, Aidan was resting comfortably. He was put on IV Protonix to help heal and prevent further damage to his stomach. It seemed to be helping. Sadly, the mucositis was back and Aidan was put on a morphine pump to manage his pain. Thank God for morphine. Lab tests revealed a few white blood cells, showing that Aidan was starting to recover from his last cycle. Once that begins to happen, the body is allowed to heal and the pain would subside. We were hopeful that the need for the morphine would be short lived. Aidan’s fourth cycle of chemo left him with some pretty awful side effects. But the side effects from this fifth cycle were merciless. In the very near future, Aidan would be in the midst of a brutal chemo regimen prior to stem cell transplant. We didn’t even want to imagine what was waiting for him there. One day at a time…
Since Aidan had some pain and significant bleeding in his belly, an abdominal x-ray was ordered. His belly looked okay (an endoscopy would need to be scheduled at a later time to evaluate the actual lining of his gut). However, they caught a glimpse of his right lung on that abdominal film. Something looked questionable. A chest film was ordered. It wasn’t normal, they needed more information. Aidan was sent for a CAT scan. We saw two bright spots. Aidan had two nodules growing in his right lower lung.
#23 The Opportunist
Our son had metastatic brain cancer and now had two nodules growing in his right lung. We knew that medulloblastoma rarely moved outside the central nervous system. And although possible, it was highly unlikely that this was tumor spread. It was more likely that this was an infectious process. Aidan was now fighting a fungal infection. This would explain the high fever that he spiked on Memorial Day.
Fungi are largely opportunists, causing infection when host defenses are down. Aspergillus was a strong suspect. Most people inhale Aspergillus spores every day, it’s found in the dirt. However, most people are not immune compromised. Once inhaled these Aspergillus spores make their way into the lungs and set up house. Aspergillosis is an air-borne disease. It’s a rapidly progressive infection that occurs in patients who are severely immunosuppressed, especially those that are neutropenic, like a three year old boy with a brain tumor.
For as awful as this sounds, Aidan’s GI bleed was a blessing. Without it, he would have never had that film taken. If Aidan were to move to stem cell transplant with a disseminated fungal infection, it would have certainly taken his life. We were so very thankful that this was caught. It was a small miracle.
Fungal infections are incredibly difficult to treat. The first step is surgical resection. Yes, our poor boy would be going in for yet another surgery. This would be his sixth. The drug of choice for Aspergillosis was Voriconazole, known in the cancer world as VFEND. The treatment courses with antifungal medications are long. Too long. In the literature, the median duration of Voriconazole therapy is 93 days. That is 3 months! This was very concerning. A little boy with an aggressive brain tumor should not wait 3 months for his next cycle of chemo.
Blog entry dated June 9, 2010: “We are still at Children’s (this visit has been 10 days so far). I am going to begin calling it our second home. Let me start by saying that Aidan is definitely feeling better the last couple of days. Again, Aidan is keeping everyone busy… We were admitted on Memorial Day for a GI bleed which seems to be healing well for now. Since we have been dealing with belly bleeding and some significant pain, an abdominal x-ray was taken. His belly looks okay, but they found 2 nodules in his right lower lung. It is most likely a fungal infection. He is scheduled for surgery tomorrow to have them resected. It looks like he will remain in the hospital at least through the beginning of next week. Please keep him in your prayers for an uneventful and successful surgery. I will update when I am able.”
#24 The Detour
Aidan’s lung surgery went fine. The surgeon was able to remove one of the two nodules. The one that remained was deeper in the lung tissue and to remove it would require complete resection of the right lower lobe of Aidan’s lung. The pathology report confirmed that it was indeed a fungus. The etiology was still pending. Aidan was put on two antifungal agents.
Aidan was taking a little detour on his road map of treatment. Another fear was realized… This fungal infection would greatly impact his stem cell transplant. The transplant team refused to begin treatment until Aidan was on 4-6 weeks of antifungal therapy and demonstrating favorable improvement via CT scan. We were not in a good place here as that was too significant of a delay.
Aidan was awake and feeling well when Dr. Jason came to visit and propose a new road map. Aidan didn’t want to talk about the new road map. Aidan wanted to watch a movie. And he wanted to watch the movie with Dr. Jason. Aidan pointed to an empty spot next to him on the bed and with a big smile, said to Dr. Jason, “Sit here.” Everyone’s heart melted. I told Dr. Jason that I would happily pull the curtain closed and no one would be the wiser. Over the next couple of days we had a few surprise visitors. It became apparent that Dr. Jason was boasting about the invitation that Aidan had extended to him. Some of the other doctors were feeling a bit snubbed, “why didn’t Aidan invite them to watch a movie with him?” Aidan had won many hearts while he was there.
Dr. Jason’s new plan was for Aidan to have a CT scan in 2 weeks to view his response to the medicine. Two weeks is not a very long time as the average course of antifungal therapy is a few months. Dr. Jason stated that if Aidan showed improvement, he would take an oral chemo medicine at home for 5 days which would remain in his system for a few weeks. That would then buy us enough time to move Aidan to transplant without incident. If, however, the scan showed worsening or no improvement in the fungal infection, Aidan would have the surgery to have the right lower lobe of his lung removed so that stem cell transplant wasn’t delayed any further. Of course it was our hope and prayer that Aidan would have good response to the medicine. It was difficult to imagine Aidan having another surgery. He had been through too much already. One day at a time…
Blog entry dated June 16, 2010: “I am happy to say that Aidan is finally home. He was released late Monday night after spending another 15 days at Children’s. His lung surgery went okay. They were able to remove 1 of the 2 nodules. The one that remains was deeper in the lung tissue and to remove it, it would require complete resection of the lower lobe of his right lung. He is on antifungal medicine and will be monitored via CT scan to determine the next step in his care. We had some positive news on Monday (our 13th wedding anniversary). Aidan had his brain and spine MRI and it looked as well as the last scan. That was all we could have hoped for. It was the best anniversary gift ever.
#25 Small Blessings
Aidan was discharged on June 14th after spending another 15 days at Children’s Memorial. Earlier that day, we were blessed with the news that Aidan’s MRI remained stable. There was a plan in place to treat his fungal infection, albeit a scary one. It was a plan nonetheless. Aidan was moving closer to stem cell transplant. We were looking forward to that being the last of his chemotherapy regimen. We had hope.
We were enjoying time at home with our boy. Aidan was feeling great. It was so nice to have some uneventful time at home. We craved the normalcy. Aidan was to have a CT scan of his lungs bright and early on June 29th. Our commute from the western suburbs was horrendous. Since Aidan was feeling so well, we decided to have a sleepover the night before at Aunt Patty and Uncle Matt’s house as they lived just minutes from Children’s. Patty, Aidan’s godmother, and Matt are two of the biggest blessings in our lives.
Aidan would refer to Matt as Matt Matt. Aidan and Matt were kindred spirits. They loved each other fiercely (That became obvious to each of you after reading the Hotdog installment). Often times when I would pick Aidan up from school he would first ask for juice and then if he could go to Matt Matt’s house. I would tell him that Matt was working. He would then ask to go to Patty’s house (Patty and Matt live together. Although Aidan loved Aunt Patty, he just wanted to go and wait there for Matt to come home). I would then tell him that Patty was working as well. After one of these exchanges, Aidan exclaimed, “Aidan work too!” I replied that, yes, Aidan worked too. He worked hard at school. And then Aidan just smiled smugly and drank his juice. He was such a smart and wonderful boy.
When I reflect back on Aidan’s time in the hospital, I could not imagine surviving those days without Patty and Matt. They made our most difficult days a bit easier. When Aidan was initially diagnosed, he spent 89 consecutive days, nearly three months, in the hospital. Patty and Matt would hold us up when we were crumbling. They would make dinner for us daily. They would take our dirty laundry and replace it with freshly washed and folded clothes. My sister’s boyfriend, Matt, God bless him, washed our underwear. Dear Matt would also bring me a box of wine. Yes, we had contraband and we would drink it out of Styrofoam coffee cups in the evening. Times were desperate and we were a mess, please don’t judge. After one of Aidan’s emergency craniotomies all of our things were transferred to the PICU for us, including the wine. Yes, those nurses at Children’s were blessings to us. Rock stars, all of them, they didn’t even bat an eye. They took care of us just as they did our son. And I will be forever grateful to them.
We arrived at Children’s very early on that Tuesday morning, June 29th, for Aidan’s scan. This CT scan would evaluate the fungal infection in his right lung. After only two weeks of treatment on antifungal medicines, we had very low expectations. We prepared ourselves of the likelihood that Aidan would have surgery to remove the right lower lobe of his lung. The results came back to us. We were told, “It looks clean.” I can’t completely recall how we responded, but I’m certain that we looked completely dumbfounded. Again, we were told, “There is no evidence of fungus.” There was no evidence of fungus! It was truly amazing as fungal infections typically take months of treatment before seeing good response. Thankfully, that meant Aidan would be spared from another surgery. He would keep his lung.
We were blessed.
Blog entry dated July 1, 2010: “Aidan has managed to stay out of the hospital for 17 consecutive days. That is HUGE for him! The last time we could say that was in December prior to his diagnosis. He had his lung CT scan yesterday to evaluate the status of the fungal infection in his lung. It looks clean, no evidence of fungus. Thankfully, that means Aidan will not require any surgery. The plan now is to start an oral chemo at home beginning today for 5 days. Once Aidan recovers from that (approximately a month from now), he will probably be ready to move to stem cell transplant. We are so very thankful to be able enjoy some time at home.”
#26 An Ominous Sign
We were thrilled with the news that the fungal infection in Aidan’s lung had resolved. Our sweet boy was spared from another surgery. We were thrilled that Aidan came home after the CAT scan. More often than not, a visit to the hospital found him admitted. The plan was in place. Aidan would take an oral chemotherapeutic agent for five days. In the few weeks following, he would have a barrage of tests in preparation for his stem cell transplant, including an MRI on July 26th.
Aidan was to take Temodar for five days. Upon googling Temodar, the following is what you find: Temodar (temozolomide) is indicated for the treatment of adult patients with newly diagnosed glioblastoma multiforme concomitantly with radiotherapy and then as maintenance treatment. Just typing that last sentence makes me so angry that my head spins. That sentence is one of the many reasons why we need more funding for pediatric cancer research. There are so many things wrong with that sentence! Temodar is indicated for adult patients. Aidan was a three year old boy. Temodar is indicated for glioblastoma multiforme. Aidan didn’t have glioblastoma multiforme. He had medulloblastoma. Again, this was the “best” treatment available to Aidan at the time.
Did you know that in 20 years the FDA has initially approved only one drug for any childhood cancer? Did you know that half of all chemotherapies used for children’s cancers are over 25 years old? Did you know that research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers? Did you know that the National Cancer Institute spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers? Now you know. I digress, mea culpa.
Aidan completed the five day cycle of Temodar. He was feeling well and we were enjoying having him happy at home. Then the middle of July arrived. Aidan tanked. Hard. He was not feeling good. He had no interest in playing or even watching his favorite movies. He became increasingly lethargic. It was worrisome. We called Dr. Jason and shared our concerns.
It was recommended that we bring Aidan in through the ER for a CT scan of his ventricles. They wanted to rule out a shunt malfunction. If Aidan’s shunt was malfunctioning it could be causing hydrocephalus. That would be a very reasonable explanation for his symptoms. It was July 22nd when we brought Aidan in for the scan. After the scan we waited. And waited. There are no words in the English language that adequately describe the tension when waiting for a scan or its results. The ER physician came in the room and said, “The ventricles look normal. However, it looks like there may be some disease progression.” What?! I felt sick and frightened and confused. Aidan just had a stable MRI on June 14th. She told us that a follow up MRI should be performed. We said that Aidan had an MRI already scheduled for July 26th, just four days from then.
That CT scan was an ominous sign. I apologize to the Cancer Parents reading. I know that word can cut you like a knife.
Adjective: Giving the impression that something bad or unpleasant is going to happen.
Synonyms: sinister – portentous – inauspicious – threatening
We went home to wait for Aidan’s scheduled MRI. We would wait for four long, excruciatingly painful days.
Our torturous wait for Aidan’s MRI was lightened for just a brief moment. On July 24th, we welcomed Aidan’s cousin, Daniel Joseph Jr. into the world. Daniel Joseph, affectionately known as DJ, is the son of my brother, Aidan’s godfather. It is amazing what can happen to one family in one week. On Saturday we were saying hello to DJ and on Monday, just two days later, we received the news that we would need to say good bye to Aidan…
Aidan had his MRI on Monday, July 26th. Our hearts sank as Dr. Jason walked in the room. I can still feel the heaviness in that room, like an elephant sitting on my chest. The look of defeat in Dr. Jason’s face said it all. But he continued to speak these words, “There have been significant changes. There is evidence of disease spread.” Mind numbing pain followed. Dr. Jason went on to state that Aidan had significant tumor spread in multiple areas in his brain and throughout his spine. Surgery was not an option as there were many tumors. The current chemotherapy treatments had already failed Aidan. The “best” treatments available could not save our beautiful son. Dr. Jason told us that there would be no cure for Aidan. Dr. Jason walked over, sat down next to me and held my hand as I looked at sweet Aidan and wept.
Our level of confusion and pain on that day is indescribable. Aidan had a stable MRI just 6 weeks prior. 42 days. When cancer comes back it is much more fierce, stronger and meaner. Medulloblastoma is an evil bastard. It invaded Aidan’s brain and spine in just 42 days. Sadly, if you spend any significant length of time in a pediatric oncology ward you will witness the broken parents. The ones in the hallway, wailing and sobbing, after receiving the devastating news that they had run out of options for their child. They were scary. The broken parents were difficult to look at, their pain so raw and so very near. On that Monday afternoon, July 26th, we became broken parents. I think of all the families that were in the oncology ward at that time, witnessing the depth of our grief on that day, in that hallway. We were scary.
Blog entry dated July 26, 2010: “I write with a heavy heart… We are at Children’s. Aidan had his MRI today. It showed significant tumor spread both in his brain and spine (much worse than when he was initially diagnosed). It is hard to imagine that just 6 weeks ago, his MRI was stable. We have had discussion with Dr. Jason, who confirmed that treatment at this point will unlikely be curative, but possibly extend his life for a little while. We are sad beyond words. How does one even begin to say goodbye to their child?”
#28 Angels on Earth
Aidan was admitted after having his MRI. We were reeling from the crushing blow we just received. I don’t remember calling my family, but somehow they appeared at the hospital that evening. I was lying next to Aidan in bed that Monday night as a nurse just stood by watching one of the monitors. Aidan’s respirations were shallow and few. In the blink of an eye a half a dozen medical team members were in Aidan’s room. It was terrifying. They started oxygen on Aidan and it stimulated him to start taking some more breaths. The medical team lingered in the room for a few moments until they were convinced that Aidan was stable. Ron and I just looked tearfully at one another, heads shaking. Nothing needed to be said. We both knew that we needed to get Aidan home.
Dr. Jason came in to check on us late Tuesday morning. We told him that we wanted to take Aidan home as soon as possible. Dr. Jason said that he would make that happen and he left to coordinate hospice care, order oxygen and morphine for home, and prepare discharge orders. Aidan would go home the very next day. It was apparent that Aidan was becoming increasingly more uncomfortable throughout the day and a morphine pump was ordered for him. It was also on this day when we heard Aidan speak his last words, a feeble Mom and Da.
Word of Aidan’s prognosis and impending discharge spread quickly that day. Throughout the day we witnessed a parade of caregivers. So many tearful nurses, neurosurgeons, oncologists, residents, physical therapists, even a couple of MRI techs…all coming in to say goodbye to Aidan. One of Aidan’s neurosurgeons chatted with us for a while. He apologized that he wasn’t able to do more for Aidan. He looked so defeated. My heart broke for him, for all of them. Those people, with their gentle hands and caring hearts, offer children their priceless efforts and expertise daily. Those people are angels on this earth. They did not fail Aidan, science did. Science failed Aidan. The shameful lack of funding for pediatric cancer research failed Aidan.
At some point during that day, Ron had the fortitude to call our church. He explained our family’s situation and that we wanted to have Aidan anointed. For those reading who are not Catholic, the anointing of the sick is one of the seven sacraments that is administered to people who are in grave danger of dying. One of our parish priests came to Children’s that evening to say a prayer and give Aidan his last rites.
On Wednesday morning, the palliative care team came to visit prior to our departure. It was recommended that we sign advanced directives for Aidan. When one thinks of the important life altering documents that you put your signature on, marriage certificates and mortgage documents come to mind. On July 28th I put my signature on the most painful life altering document, a DNR order for our three year old son. It honored our defeat. We were discharged from our last inpatient stay at Children’s Memorial. We buckled Aidan safely into his car seat with morphine in tow and headed west on the expressway. We were bringing Aidan home to die.
When we arrived home on that Wednesday afternoon we were greeted by a hospice nurse from Hope’s Friends. Hope’s Friends is the pediatric portion of the Hospice and Palliative Care of Northeastern Illinois. A photo of a hospice nurse should be placed next to the word ‘angel’ in the dictionary. For so many months during Aidan’s treatment we chose to have hope. We had hope for a cure, hope that our sweet boy would survive his brutal diagnosis. After learning that there would be no cure for Aidan, we still chose hope. Our hopes evolved to include a painless, peaceful passing for our son. Hospice would help us do that. We were the luckiest of the unlucky to have those nurses with us. Not many people are strong or brave enough to do that job. Lord knows I’m not.
It was on Thursday, July 29th when we began to see signs that Aidan’s body was shutting down. We knew that the end was near.
The intimate details of this day private will remain private.
Blog entry dated July 30, 2010: “I am deeply saddened to share this news. Our strong, brave, gentle boy has left this world. Aidan passed away this afternoon at home in our arms.”
Aidan died just 4 days after we learned that he had relapsed.
His certificate of death:
Name of descendent: Aidan Wayne Manning
Age at last birthday: 3 years
Date of death: July 30, 2010
Time of death: 2:45 p.m.
Cause of death: progressive brain tumor
“And we wept that one so lovely should have a life so brief.” ~ William Cullen Bryant
This is not the end of Aidan’s story.
#30 The Army
Aidan died. As a black hearse was backing into our driveway on that Friday afternoon, we were showering Aidan with our final kisses. Ron carried Aidan’s lifeless body out of our family room and gently laid him on the gurney. We walked outside and stood on our driveway watching the hearse drive away with our son in the back. We crumbled into sobs right there on the concrete.
We were numb. The air outside felt different, almost stale. It was July 30th yet the sun wasn’t warm. Thankfully our family was there when we made it back inside the house. My brother and sister said that they would be by first thing in the morning to take us to the funeral home and cemetery to help make arrangements. I am so grateful for that. I found breathing to be difficult. There was no way I was capable of picking out a casket for my son. We brought the clothes that we wished Aidan to be buried in to the funeral home. They captured the essence of Aidan. A Paul Frank T-shirt that displayed Julius wearing an army helmet and dark wash Gap jeans. No shoes. No socks. Aidan hated them. I would honor that.
There was a beautiful funeral mass for Aidan. It was a lovely tribute to our sweet boy. His beloved music teacher, Miss Christy, sang “Simple Gifts,” her final good bye to Aidan. A lone bagpiper played “Danny Boy” as he led the procession to a graveside prayer service. Flowers were placed on Aidans casket and he was buried in the earth. Our boy was buried in the earth along with our hopes and dreams of a bright future. We went home to grieve.
What just happened to our family? Our beautiful family. Aidan was a wonderful boy who lived a cruelly abbreviated life. We needed to make sense out of what happened to us, to Aidan. We needed to give this experience meaning, to make our journey purposeful. Elizabeth Edwards once said, “Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.” And that’s what we did. Again, we would choose hope.
Aidan’s Army – The Aidan Manning Memorial Foundation was founded in October 2010. Our work through the foundation is how we parent Aidan now. We chose to turn our experience into hope for other families, to provide hope for children with brain tumors. Although Aidan did not get the chance to live a long life, his courage, bravery and strength continue to inspire us everyday. The Aidan Manning Memorial Foundation is dedicated to advancing research and treatment of childhood medulloblastoma, while providing children with the most sophisticated treatments available.
Sweet Aidan has found peace. We know this for certain. There are no brain tumors in heaven.