Positive

Most people fear meningitis is contaigious. Some types can be, but in February 2016, we finally got confirmation as to what had caused Jake to have meningitis for 4 months. At no point or moment was Jake contagious.  They could not find a source of infection. Patients have died waiting for confirmation. After Jake’s lung biopsy, we finally got something to come back positive. It was like music to our ears! Most people would freak out upon seeing a large mass in their child’s lung, but we were so relieved that finally something might be treatable and end our nightmare. He was moved to an isolation room, and we were

required to gown and mask up to be in there. The masks were uncomfortable.  We would take them off when there was no one else around. Dr. S. also didn’t wear a mask when he visited. He had been with Jake the whole time, and we felt pretty sure it wasn’t contaigious. It took 2 weeks to get the culture to grow and finally confirm diagnosis.  It was MAC bacteria.  A very common, but hardy bacteria found in our soil, water and air. It is encapsulated so it can survive extremely harsh conditions.  It survives chlorination. We have all had it in our bodies. Healthy immune systems can fight it. It hangs out on our shower heads and forms a white crust. It can be removed with vinegar. It was treatable. Jake would take 3 different antibiotics for the next 18 months to make sure it was completely eradicated from his now frail body. Undiagnosed, a patient usually dies in about 9 months from this infection…if he was infected at camp, we were on month 8…

Pet scan…

From October 23, 2014 through January 2015, Jake had countless blood tests, MRI’s, cat scans, lung scope and lavage, and a dozen spinal taps. Nothing was conclusive; results were varied and sometimes perplexing, and every culture was negative. Normally one would hope for a negative result. Jake continued to deteriorate.  The infectious disease team walked away for the 3rd time, concluding it was not infectious. Autoimmune made sense, but Jake had not responded to the Remicade.  Samples were sent to Mayo. Dave and I traded every night- never leaving Jake alone. Soon after the shunt was adjusted, Dr. S. stopped by to say he was going to try to get a pet scan approved by our insurance. They were missing something. Maybe it was more than Jake’s lungs that was affected. Maybe it was a different organ.  It was most likely connected to his NK cell deficiency,  but not enough was known about it to know for sure. The pet scan can reveal things that no other test can. It is expensive, but it has saved many from exploratory surgery. The next day, Dr.S. asked me to come out into the hall. He had a computer on a cart. “I want to show you something,” he said as he pulled up Jake’s images. It was Jake’s lungs. Hidden in the upper right lobe,  surrounded by undefined lymphatic tissue like a cocoon, was a green, glowing mass the size of a golf ball. It was a last minute Hail Mary play that saved Jake’s life…”What do you think that is?” he asked. Histoplasmosis? 

Rockstar. ..

While Jake was admitted for a fever, which became the first priority, we were still concerned that the pressure was not being controlled like we’d hoped.  Dr. S. researched a little deeper,  and though very unlikely,  it was possible it could siphon out too much cerebrospinal fluid. What are the odds? Jake had already been referred to as the 1: 1,000,000 kid, but could he be that unlucky?  Dr. S. reached out to Dr. F., who had performed the surgery. “Impossible, there’s no way that shunt malfunctioned.”  There were infectious disease teams looking for infection,  dermatologists looking at his rash  (which perplexed everyone who saw it), physical therapists, chaplains, social workers,  pulmonologists, and the hospitalists coming in and out all day long. Jake was growing weary of it. It was late January by now, and he wasn’t any better than before. Finally we got angry. We were tired of waiting, tired of no answers, tired of watching Jake suffer… Dr. S. stopped by late one afternoon , and again we discussed the possibility the pressure was too low. Instead of going home for dinner, he prepared for a spinal tap. We watched and hoped for a normal reading.  There was no reading…he could not get a single drop to come out. Our fear seemed likely- he’d been lying there for 3 weeks with no cerebralspinal fluid… 3 days later, on a Friday afternoon- just before another long weekend- Dr. F. showed up to adjust the shunt. Dr. S. said loud enough to hear, “You’d think you were a Rockstar…I’m glad you finally graced us with your presence. “

Shunt…

Jake went to the adjoining children’s hospital for his vetricular shunt placement surgery. He was scheduled for January 9th, 2015. We didn’t make it. He had gone to see Dr. S. the previous week with too much pressure; after a lumbar puncture, he received an IV bag of prednisone. The plan was that it would hold him over until surgery. There was also the forecast for heavy snow the 7th and 8th. We decided that Jake and I would go stay in a motel near the hospital just in case. The snow wasn’t too heavy, but Jake’s pressure became unbearable, so we went to the ER in the middle of the night.  He was admitted early,  and the shunt placement seemed to go well. It is totally internal. It can be seen (after he lost his beautiful, thick hair to chemo) and felt on the top of his head. The shunt is placed in an open, fluid-filled spot on his brain and a tube runs down the back of his head, down his neck and chest and empties into his abdomen.  He had a flap lifted on his head and two incisions to thread the tube down. If the pressure became too high, the shunt would remove the excess, but keep the pressure at a normal, healthy level. We took Jake home a few days later, and at first he seemed ok. “Mom, I have a headache…” I cringed. He had never complained of headaches, but now they were a sign of something very serious. We were prescribed a pain reliever, but the headaches persisted until he would lie down. I emailed Dr. S., “Somethings not right.  The pain subsides when he lays down, and he is coherent.  Could the pressure be too low? He just doesn’t feel good…” Dr. S. hadn’t placed the shunt, but he was the doctor I trusted and counted on. We were seen the next day. Before the doctor came in, the CNA said Jake had a fever. THAT changed everything.  Jake was on an antibiotic,  antiviral and antifungal.  He shouldn’t have a fever. I started to get nervous. He was admitted, and they started looking for the source…

Nancy Drew

My friends and I have a secret- we are undercover “Charlie ‘ s Angels!” Stephanie wanted to be “Kelly”-the smart, beautiful brunette. Obviuosly, I was “Jill”-the sexy blonde who could ride a skateboard. That left Lisa to be “Sabrina”- the smart, no-nonsense one. Somebody had to be Sabrina. “Yeah, Thanks guys…” We three have a lot of fun, and love nothing more than to use our investigation skills. I used those skills to find the email addresses of my doctors. People have asked why we didn’t move Jake to Mayo. We had built a rapport with Dr. S., and he promised to transfer Jake if needed. He wasn’t arrogant- many times he said, “I don’t know.”  But he talked to us and listened. He spent his weekends thinking about Jake. He was very determined to fix this kid. We trusted him. I don’t know why I first emailed him, but I thought very carefully before I sent it. I didn’t want to over-step any boundaries.  His reply was thoughtful and thorough. To this day, we communicate through email, and I hope someday to send him a picture of a healthy kid graduating from college. I used the internet to my advantage. I emailed doctors at St. Jude, Mayo and the nation’s expert on NK cell deficiency in Houston. I heard back from all of them within a day. They seemed genuinely interested and helpful. What I found was they knew of Dr. N. and assured me that we were in very good hands. I don’t pack heat, and my detective skills have never led to an arrest, but I love a good detective show, and if “Charlie” ever calls, I’m ready…

Always ask twice

If I am able to spread the word about nothing else, I want this message to be heard…don’t accept the first answer you hear, unless it is a satisfactory one… I was originally told our big city hospital wasnt in our PPO- I checked again. I was told we didnt have insurance coverage for housing- I checked again. In both cases, the first person didn’t know or care that they gave me wrong information. I’m not sure how Jake made it through his first semester of college.  He had spent 6 months at home recovering from meningitis, but he slept A LOT. We were more than nervous to let him go, but he needed to move on with his young, hopeful life. Jake has always done what’s expected without complaint. His blood tests came back decent in August. His pulmonary function test had not improved, but we attributed that to his inactivity. We had no idea that soon his body would soon be fighting leukemia.  When he was home for Thanksgiving,  he slept a lot. It didn’t seem abnornal. He went back to begin his 2nd trimester. 2 days in, he called us- fever and shortness of breath. At the student health services where I met him, he was tested for influenza, mono and strep- all negative. I immediately called the nurse of his pulmonologist -she was our “GO-TO-GAL”, she proclaimed. I expected and was prepared to drive the 2 hours immediately to get him seen. “Oh honey, it’s probably viral; there’s nothing we can do for him here; call his PCP.” Wrong answer…You are his PCP now- our local doctor no longer could see Jake- it was out of his league. I called anyway for a chest x-ray at the very least. “Take him to their ER if they won’t get him in.” I didn’t disagree, but I hated to put Jake through it. I emailed his neurologist and infectious disease doctors. I didn’t hear back. At 9 PM I emailed Dr. S. again, “Should I start him on prednisone? ” That got his attention , “Can you bring him to see me tomorrow? ” Our “go-to-nurse” amazingly scheduled an MRI for his chest and made room in the doctor’s  schedule then. Jake’s lungs were full and that warranted an admission. Jake felt bad enough, he didn’t protest. Dr. S. told me later that the nurse had not consulted the doctor about my call. He didn’t even know Jake was there that day. I refrained, but to this day, I want to march into her office and make sure she understands how serious Jake’s condition was that day. At the time though, none of us had any idea…

Be the Match

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I call this “life in a bag”. I panicked immediately when we realized a bone marrow transplant was in Jake’s future. What if we can’t find a match? The odds were not in his favor that his only sister would be a match. Thankfully friends from home immediately wanted to hold a bone marrow registry drive. I thought of Jake’s college- we have a strong support system. I contacted the Be the Match organization, and they were immediately on board. It came together very quickly, and our hometown group went above and beyond. I was able to attend the afternoon university drive. The Facebook parents’ group, the Dean of Students and the Pikes made sure every organization and residence hall and the local media were notified. My husband, the principal of our high school, attended the hometown registry that evening which took place during a basket ball game. The opposing team’s coach got in line to have his cheek swabbed for DNA and bought every kid on his team a #matchmeister t-shirt. The cheerleaders wore the t-shirts, and the gym was filled with matching t-shirts in support of Jake. They collected 400 potential donors in one day. Some of them have been contacted as potential matches. In most cases, being a donor has become pretty easy. Injections are given to help the marrow produce more stem cells. There is a line placed in each arm, and the blood comes out, is spun through an apheresis machine and given back to the donor.  I realized later that Jake had pretty good odds of finding a match- because he was white with white parents of Irish, Scottish and German descent. There is a dire need for mixed race/ethnic groups and minorities to join the registry.  A young woman was just on the news, and they couldn’t find a match for her. A husband was on the news and his wife had died because all 4 of her potential matches declined. We lucked out. We found out the day before the registry that Jake’s only sibling was a 10 out of 10 perfect match… For more information, go to www.deletebloodcancer.org or www.bethematch.org.

Mother

When Jake became critically ill, my mother was also dying. I had been with her everyday for the past few years, and it was incredibly painful to not be with her. When it was my night at home, and Dave was with Jake,  I had to muster up the strength to put on a positive face and be with my mom. “What can I do? Oh Mari, I feel so helpless. Poor Jake.” “Just pray,  Mom, that’s the most important and best thing you can do.” I don’t know what was harder for my dad- seeing Jake so sick, seeing my mom so sad, or sitting at home feeling helpless to both of them. Not being able to fix it was difficult.  In December 2014, hospice was called in to care for my mom.  Jake was released from the hospital around the same time. On December 22nd, we knew it wouldn’t be long for my mom. She had said her last words a day or two before.  My sister and I were there for the duration. I was thankful Dave, Jake and Molly were home.  At a little after midnight, December 23rd, my dad came back to the hospital. He placed his hand on her chest, and she took her last breath.  I fell into her lap and cried. We waited with her until they took her away. On Christmas Day, my father and I worked on funeral plans and Dave had to take Jake to the emergency room. He came home after a bag of prednisone.  The visitation was the 26th. That night we had to take Jake back to the ER. We waited all night in the ER until he could be admitted the next morning. A family friend drove 2 hours to get me so I could be there for my mom’s funeral and burial. Each grandchild placed a pink sweetheart rose by the Virgin Mary in honor of their grandmother. Jake, who was supposed to lead the 9 grandchildren, stayed in the hospital about a week,
and they decided to place a  vetricular shunt in his head to control the pressure…

Back and forth…

It wasn’t long before it became clear to us that Jake wasn’t ok. The Remicade wasn’t working like we’d hoped. The Sarcoidosis /autoimmune theory wasn’t completely wrong- something was causing his body to respond, but they couldn’t find it. We were back and forth several times having excess cerebral spinal fluid drained and IV bags of prednisone. This bought us time… we’d show up at the emergency room, and the doctor would look at his file, and inevitably say, “There is nothing we can do for you…” I would respond, “We just need pain control until Dr. S. gets in and can admit him.” During one extended stay, they inserted a tube/drain into the spinal meninges to relieve the pressure. We found out later that the amount of pressure was unprecedented.  They were able to keep it under control so Jake remained coherent and alert. A young doctor was on rotation again and got to talk to Jake. “Man, I am so glad to see you again and talk to you. I was so afraid that before [when you were so incoherent ] you’d never be back [to normal].” No one had ever suggested the possibility it could cause permanent damage. When word spread around the floor that he was the valedictorian and planned to go to an engineering school, people treated him differently. I know people assumed, especially in the ER, he was out of his mind from drugs. His hair had grown longer and his beard was pretty scraggly.  All I knew was he was my baby, and I wasn’t ready to let him go.

Remicade good…

Jake ended up having about 11 gram bags of prednisone his senior year. It is a brutal drug, and it took months to wean him off of it. He started an IV drug called Remicade before he was discharged. We cautiously took him home, and the plan was a monthly infusion of Remicade.  He planned to return to school for 2nd semester. My mom was living in the hospital by that time, and we intended to have Thanksgiving in the cafeteria. At first we tried to keep Jake’s illness from her, but she was used to me visiting once or twice a day. I finally had to tell her. I could see the spark go out of her that day, and her health continued to decline. Dave and Jake decided to grill steaks on Thanksgiving because the hospital seemed too risky for his compromised immune system.  Things were looking hopeful. Jake’s second infusion left him feeling “Remicade good”.  He went to see my mom in the hospital.  The look on her face when she realized it was “her Jake” was priceless.  She forgot by the next day that she had seen him, and she was back to fretting. Within a few days, “Remicade good” was wearing off. His headache returned, and he was speaking jibberish again.