Aidan's Army -The Aidan Manning Memorial Foundation

Aidan's Army -The Aidan Manning Memorial Foundation Aidan's Army provides hope for children with brain tumors by funding research to advance treatments of Medulloblastoma. Visit www.AidansArmy.org

09/30/2021

* Aidan's Cancer Story: #30 The Army *

This is the thirtieth of thirty installments of Aidan's Cancer Story, documenting his seven months of treatment, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.

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 body out of our family room and gently laid him on the gurney. We walked outside and stood on our driveway watching a 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 Aidan’s 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. 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. Our work helps researchers move closer to a cure. Aidan's life, albeit too short, has made this work possible and his passing has made it necessary. His courage, bravery and strength continue to inspire us everyday.

The Aidan Manning Memorial Foundation is dedicated to advancing research and treatments 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.

Did you know that pediatric brain tumors are the deadliest form of pediatric cancer? 389 children across the U.S. will be diagnosed with a brain tumor this month and approximately half of them will not survive. Nearly 13 families across America will learn that their child has a brain tumor today. 13 more will join them tomorrow.

09/29/2021

* Aidan's Cancer Story: #29 Heaven *

This is the twenty-ninth of thirty installments of Aidan's Cancer Story, documenting his seven months of treatment, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.

The intimate details of this day 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

This is not the end of Aidan’s story.

Tomorrow: #30 The Army

09/28/2021

* Aidan's Cancer Story: #28 Angels on Earth *

This is the twenty-eighth of thirty installments of Aidan's Cancer Story, documenting his seven months of treatment, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.

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 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 acouple 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 was 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.

Tomorrow: #29 Heaven

09/27/2021

* Aidan's Cancer Story: #27 Terminal *

This is the twenty-seventh of thirty installments of Aidan's Cancer Story, documenting his seven months of treatment, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.

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 goodbye 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?”

Tomorrow: #28 Angels on Earth

09/26/2021

* Aidan's Cancer Story: #26 An Ominous Sign *

This is the twenty-sixth of thirty installments of Aidan's Cancer Story, documenting his seven months of treatment, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.

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 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 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 the last 35 years the FDA has approved only three new drugs 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.

om·i·nous/ˈämənəs/ 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.

Tomorrow: #27 Terminal

09/25/2021

* Aidan's Cancer Story: #25 Small Blessings *

This is the twenty-fifth of thirty installments of Aidan's Cancer Story, documenting his seven months of treatment, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.

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 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 bottle of wine during our stays. 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.”

Tomorrow: #26 An Ominous Sign

09/24/2021

* Aidan's Cancer Story: #24 The Detour *

This is the twenty-fourth of thirty installments of Aidan's Cancer Story, documenting his seven months of treatment, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.

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 roadmap 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.

Tomorrow: #25 Small Blessings

09/23/2021

* Aidan's Cancer Story: #23 The Opportunist *

This is the twenty-third of thirty installments of Aidan's Cancer Story, documenting his seven months of treatment, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.

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.”

Tomorrow: #24 The Detour

09/23/2021

* Aidan's Cancer Story: #22 Morphine *

This is the twenty-second of thirty installments of Aidan's Cancer Story, documenting his seven months of treatment, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.

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.

Tomorrow: #23 The Opportunist

09/21/2021

* Aidan's Cancer Story: #21 Coffee Grounds *

This is the twenty-first of thirty installments of Aidan's Cancer Story, documenting his seven months of treatment, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.

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.”

Tomorrow: #22 Morphine

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