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.

Another negative result. ..

We were thrilled when the pulmonologist said she had identified the bacteria in Jake’s lung.  They started him on the proper antibiotics, and we were hopeful- it was very treatable.  A few days passed with no change, and eventually a negative result came back after the lavage cultures had time to grow…nothing. Dr. S. decided to start him on gram bags of IV prednisone.  Jake started to come around after weeks in the ICU. He had been hallucinating, delirious and couldn’t sleep for a few days straight. I don’t know how I drove back and forth those two hours. I basically cried and said the Rosary the whole time. It became winter, but we kept taking turns and driving back and forth. We had to make a bed out of a chair and a bench in his room. One nurse made it clear they didn’t want family members in there. We had a different nurse every shift. I realize now they didn’t want anyone getting too attached or familiar with the ICU patients because it might not be a happy ending. If it hadn’t been for Dr. S. and him taking a little longer to talk and listen, we would have lost it. We looked forward to his daily rounds, and hated the long, lonely weekends when he wasn’t here. We still didn’t have a conclusive answer, but the gunk in his lungs appeared to be an autoimmune response, and the prednisone seemed to be working. Jake was weak and thin, but it looked like he’d be home for Thanksgiving.  Dr. S. made a plan to start Jake on Remicade for an autoimmune disorder. This made sense as it went back to the local doctor who thought Jake had a connective tissue disorder. Yay! Home with a plan…

Big city hospital…

I have never felt so alone or scared in my life. I finally found my way to the ICU of the new hospital- no one was there to greet me. The doctors were going to do a spinal tap.

I was surprised they did it bedside so I was there for the whole thing. They have to puncture into the lining of the spinal cord and draw out cerebrospinal fluid. There is a glass tube used to measure the pressure. Jake didn’t flinch.  He probably had 10 -12 of these procedures before it was all said and done.  What I didn’t realize until much later was that Jake’s pressure was always exceeding the tube’s ability to measure. 13 to 18 was normal; most cases of meningitis would go to around 30, but Jake’s was beyond 50- the highest reading. Sometimes they would drain off what they thought was enough, and it would still read too high. They started culturing his blood to try to isolate the culprit.  There were several teams of doctors who would come visit each day, but most wouldn’t say much. The waiting and lack of knowledge was really frustrating.  Eventually the blood tests started coming back. ..negative. They reluctantly decided to start him on an antifungal. I started to panic more because the negative tests were discouraging, and with the  “help” of Google,  I knew a fungal infection was more likely to be lethal. The antifungal medication is pretty harsh so it was a difficult decision. As more time passed, they decided to do a lavage and bronchial scope of his lungs. I kept repeating his history and symptoms and it kept going back to his lungs. The neurologist suggested sarcoidosis as an explanation to the gunk in his lungs and negative cultures for infection. After the lavage,  the doctor came out and told us, “I think I have identified the bacteria,” Is it treatable?  “Very…”

The first week….

Initially I thought Jake had meningitis,  but then he seemed kind of stable in the ER. No spinal tap- just other tests. Pretty soon they admitted him. It’s a nice hospital 25 minutes from home, so by the end of the day my dad and husband came over. Things started to go down hill from there. Jake started talking jibberish. He was irritated or upset about something, and he kept repeating the same incomprehensible “words”. I thought maybe he was worried that he was missing work. Pretty soon he was trying to get out of bed. It took a lot to hold him down. Still no spinal tap, but he was moved to the ICU. Initially that scared me to death, but then I came to realize it meant more attention from his nurse. They started the broad spectrum antibiotics just in case it was bacterial. I started telling the doctor about Jake’s history. “Who told you that? I’ve never heard of anything like that. What hospital? ” I told him the name of Dr. N. and the hospital. Pretty soon they started him on anti viral medication and ordered other tests like an MRI of his brain. An allergy/immunologist stopped by eventually and reassured me that Dr. N. was the best in the Midwest.  He has an immune deficiency. The doctor replied, “Well I think he has a pretty good immune system,” Puzzled. ..I let her continue…”He’s still with us…” That was the first time I thought my son might not survive this. Jake went in and out of consciousness and coherence the rest of that week. His girlfriend came to visit one evening. Jake turned to his nurse, Greg and asked, “Who is that girl staring at me? She’s kind of stalkerish.” We giggled about it later, but he had no idea who she was. He lost control of his bladder, and over and over they had to change his sheets. This greatly agitated Jake, and it became unbearable for me to watch. I started to realize he would fidget when he needed to go, and I would grab the urinal and try to catch it. A team of doctors and I were standing around his bed when he started to fidget. I nonchalantly grabbed the urinal and tried to assist Jake when he came back into awareness. He looked around, and my son who was offended by cursing yelled, “What the f*$% are you doing? Why are YOU touching my junk?” By the end of that week, a couple of nurses were hinting that we needed to get Jake to a larger hospital when the doctor came in. “Jake is not responding to our treatments. His MRI shows nodules in the brain that I’ve never seen. His immune deficiency complicates this further, so we believe it is time to transfer him to a larger hospital.”  Our daughter and dogs were at home, so my husband, Dave, and I took turns. It was my night, and I couldn’t ride in the ambulance.  I followed them in my car to an unfamiliar place that would be our home until late February.

Meningitis

At 5:30 AM on October 23, 2014, Jake woke me up, “Mom, I have the worst headache ever, and I’ve been vomiting all night.”  Meningitis popped in my head. I wasn’t going to mess around. I immediately drove him to the emergency room. They gave him morphine for the pain, and he was hungry and texting on his phone. Maybe I overreacted… A year ago I had a patient in the pharmacy who was irritated that the Tamiflu prescribed to him was over $100.00. We discussed it- he didn’t have to buy it. It would shorten the duration of the flu, if he had the flu.  Had he been tested? No. I told him the medicine would be here if he decided he needed it. The next Tuesday I heard he was fighting for his life in the same hospital that I took Jake to initially. The gentleman had bacterial meningitis. The Tamiflu would not have made a difference. Bob survived. I later talked to his wife and him about his ordeal. There are many types of meningitis.  There is a vaccine for meningococcal meningitis that helps protect people living in close quarters like a dorm or in the military. Meningitis literally means swelling or inflammation of the lining of the brain and spinal cord.  In 20 years, Bob’s doctor had only seen 2 cases of this type of meningitis, and his first patient died.  It’s crucial to identify the cause so the proper treatment is given. They guess initially and administer broad spectrum antibiotics. It takes weeks for the cultures to come back. Many patients don’t have days, let alone weeks. Generally viral meningitis isn’t as serious. People don’t really understand that they are often infected by a virus, and viruses do not respond to antibiotics.  Everyone wants an antibiotic.  They flew out of the pharmacy like candy.  I poured them down my kids’ throats.  I found too that people don’t understand there are many types of meningitis, and they aren’t all contaigious. Bob’s was. No one else contracted it, and after a difficult battle, he regained his health. I met an 18 month old girl when my daughter was about the same age. The little girl was missing both feet and one hand and her other thumb. The young mom volunteered her story. She and her husband worked opposite shifts so their baby didn’t have to go to day care. She became critically ill with a bacterial meningitis, and they have no idea where she contracted it. Her body, in an effort to survive, focused all of its energy on the core organs and brain. Her extremities began to die. She survived with the loss of body parts. I swear the Holy Spirit spoke to me that morning,  I just had no idea that meningitis could last for 4 months…