Born…

I am driving with Molly to the city where both the kids were born, and there is an Apple store. Her phone has an issue with the camera. It’s completely worthless without the camera, Mom; I might as well not even have a phone. Dave is with Jake.  They had to insert a catheter.  This chemo is especially hard on the bladder- luckily just spasms and not blood clots. I will be glad when this passes and his mouth and throat sores go away. He can’t eat. A mom always feels better when her kids eat. Molly and I are getting close. Driving this way makes me think of when the kids were born.
I was referred to an infertility doctor because it took 6 years to have Jake. They never could find anything physically wrong with either Dave or me. My PCP said, “Just relax, kiddo, there’s nothing wrong.” Looking back he was probably right.  After 36 hours in labor, the nurse monitoring my labor made the decision an emergency cesarean section was going to be done- stat. Jake was in distress. With each contraction, his head pushed on my pubic bone. This is normal, except his umbilical cord was caught between the two. This wasn’t Lucille ‘ s first rodeo, in fact Jake was her last baby- she was retiring. Our perfect, healthy baby boy was born at 11:20 am on a beautiful October 1st, 1996.

Independent…

Dave and I are seldom together in public. It is how we roll. From the minute we were married over 25 years ago, we figured out how to be together without literally being with each other. He was a coach early in his career.  I don’t like to watch sports unless my kids are participating. I should have gone to Dave’s games to support him, but someone had to be home with the dog. We are very devoted to our fur babies.  So over the years, we would divide and conquer. If Molly had a softball tournament,  I would go, and Dave would stay home with Jake and the girls (the 3 dogs). Dave is 100% committed to his job, and I support that. In fact that was one of the reasons I retired from teaching. I needed to be home for the kids. I go shopping by myself or with girlfriends. I flew my daughter to Spokane to visit Gonzaga. I flew to Dallas to help my brother move. I drive back and forth to Indy by myself, and Dave and I take turns. It is not a reflection on our relationship; we do what we need to do, and I’m pretty independent. The kids come first. We can’t waste time being selfish or petty. We still communicate (thank goodness for cell phones) and can talk at any given moment. If I call once and immediately call back, Dave knows it’s important.  So my blogs are mainly written from my point of view. I was there by myself, drove back and forth by myself, and that is ok. We’ve done what we felt needed to be done. One of us would be home every night for Molly and the dogs. My dad and my sister and her family  have been there to fill in the gaps. Molly has had a rough couple of years, but she has thrived. She too is becoming an independent young woman. This will serve her well…

Maybe..

Last year there were several times that I thought, maybe Jake had to get this sick to finally get the answers we need. We didn’t get the answers until a year later, and because it’s such a rare condition, Jake may be paving the way for future patients. It will take time to know if this is the answer. More than a year ago Dr. S. threw out the idea of a bone marrow transplant.  He was the neurologist, but he probably spent more time thinking about how to cure our kid than all the others combined. Jake was certainly interesting and rare, and many students were brought through for the experience. There wasn’t a lot of research out there, maybe now there will be more. Dr. S. read everything he could and drew upon his own experiences, but things were just theories and unknowns.  But he threw it out there. Maybe just to us. Maybe to other doctors. A bone marrow transplant could be curative. If we could cure the NK cell deficiency. .. I also read medical journal articles, and a name popped up- a doctor from Baylor who was a leader in NK cell deficiencies.  I couldn’t load Jake onto a plane, so I figured out his email address.  I heard back the next day. I’m sorry for what your son is going through. His case is very interesting, and I would like to keep updated on his progress. Anything you can share would be appreciated.  And yes, a bone marrow transplant could be curative… the problem is that you don’t just do a stem cell/bone marrow transplant willy nilly. Do the benefits outweigh the risks?  Currently there are 200 conditions treatable by these transplants.  There is a little girl with a rare type of anemia that causes physical abnormalities.  She could be cured with a BMT. But she will continue to endure the disease until it becomes bad enough that there isn’t another choice. Last year Jake wouldn’t have been approved for a transplant…

Blame…

Being a patient is difficult; being the loved one of a patient is very difficult.  Jake barely complained- he was too sick to think about it. How many times I wished it could be me in that bed. Dave could go to work, Jake and Molly could go on with their lives, and I could handle it. I could take that burden from him. To be there and be completely helpless was excruciating.  What many people don’t realize is there are no quick, easy answers.  Doctors can only draw upon what they have experienced, seen and read about in journals. We were told over and over again that they had never seen a case like this….will probably never see another one. Dr. S. said he had ordered pet scans for patients after Jake’s revealed a hidden mass of bacteria, so encapsulated it hadn’t been found before. Dr. N. has thanked Jake for enriching his life. Jake will be his first stem cell transplant with an NK cell patient. So I believe other patients will be helped because of Jake’s experience.  People may not understand the process of ruling things out. They perform tests to rule things out. Not all tests are conclusive. Jake’s blood results were all over the place. One number was 540 and it should have been 30, he was completely decifient in vitamin B 6, and many other results that could have meant 100 things or absolutely nothing. Most of the doctors did not share the results. Even Jake’s leukemia tests were inconclusive. It took two weeks to decide if he had AML leukemia, and I honestly think they started the chemo not 100% sure. It wasn’t their fault, there just weren’t the typical results they expected.  If Dr. S. wouldn’t have taken the extra time to talk to us and tell us things that no one else would say, we could not have endured those months of waiting. He wasn’t afraid to say, “I don’t know, or I was thinking about trying this.” We were forced to be patient. Blood cultures take forever to grow. We didn’t miss a holiday in the hospital, and people go on vacation. It took longer to see if Molly was a match because of Christmas and New Year’s. People die every day waiting for answers. Many NK cell kids die of infections before they are diagnosed. People want to blame someone when bad things happen. I don’t know how we held up, maintained our composure, or had the patience to endure the last 2 years…there have been irritations along the way- the “acid reflux” misdiagnosis, the infection being missed more than once, the shunt malfunctioning,  the nurse telling us there’s nothing they could do.  Did Jake inherit this?  Was it a random mutation? Is this God’s plan? I may never know, but I am thankful that I have had some peace in not bearing the burden of placing blame on anyone. ..

August 21, 2015

I have said several times, if this had to happen, I’m glad it is now instead of when Jake was in his 30’s with a family, a job and a mortgage. I have cherished every moment with him during this time when normally he would be leaving the nest. Today I met a family hanging out by the nurses station in the bone marrow transplant unit. This is the first time in this hospital where I’ve met and visited with other patients. I was drawn to them because of their cute little girl. I like your boots!  Dad is 27 years old. He is about to have his second stem cell transplant. He is having his own stem cells given back to him. They took his stem cells and saved them to help him survive the horrific chemo he would have to endure. He had no idea he had testicular cancer. His greatest risk factor was his age.  Who expects to get cancer in their 20’s? He had back pain. It was reasonable that his chiropractor thought it was a pulled muscle. By the time he was diagnosed on August, 21, 2015, it had spread to his kidney. They operated to remove his kidney, but found another mass on his other side and spots on his liver. He was told to get his affairs in order; they were certain it was a rare type of cancer that was inoperable and incurable.  Results finally showed that it was actually just testicular cancer that had spread. He endured the chemo and radiation, and is receiving his second stem cell transplant next week. Imaging has shown a significant reduction on the mass in his abdomen. The little girl probably won’t remember this, and they won’t have another biological child as the chemo has destroyed his fertility, but I could tell they were hopeful for their future…

Back to back…

Jake had been through a lot. We are lucky that medical technology allows doctors to see inside the body. I remember my parents and grandparents talking about exploratory surgeries and chemo and radiation when I was a kid. It was brutal. Jake once questioned, “Why me?”, and the best I could come up with was everyone goes through rough patches, Jake. You don’t always realize or see it, but they are there. It’s true that many people are much older than you, but it happens to everyone. If they would have transferred Jake to the children’s hospital initially,  he would have seen a lot of kids going through these rough patches, but here- he was a baby. Of everything he endured, including the chemotherapy, I think the back-to-back surgeries was possibly the hardest. It took time, and he recovered, but by the time we came home in March, he had a boat – load of pills, PTSD, and neuropathy…

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…