Vest…

I need a vest and a name tag.  I find myself giving people help quite often. The other day. a couple of nurses were trying to get a patient in a bed on the elevator.  They tried in vain, but it didn’t fit.  Have you tried the service elevator?  They didn’t know where they were so I helped them. I can tell when someone is confused or lost, so I volunteer to help. I’ve done this so many times at Walmart,  I need compensation. Excuse me, do you know where they keep sour cream? My wife made a list, and I don’t want to screw it up… I just ran into a couple who were clearly lost. The woman had lost her hair- I had a feeling I knew where they were headed. I watched them ask the janitor – he was sorry, but he had no idea. I interjected, can I help you?… Not only do I know where you’re going, but my son’s there too. Follow me.  You’ll be in good hands up there. “Oh thank you, we’ve been lost in this hospital for an hour.” Jake has 2 new neighbors this morning. I think I’ll stop by and offer to show them around this big,  strange , scary place…

Mayo bound

Next week a dear family is headed to Mayo Clinic to hopefully find answers. The young mother has been ill since last November. They had returned from Mexico, and she had a fever among other symptoms. The fever has continued.  She has been examined and tested by several doctors and specialists.  Her sister and I were out to lunch, and I kept asking questions. Not only was I concerned, but I was interested.  Our own experience was on my mind. Have they done a pet scan? I didn’t want to be a pain, but I wanted to spare her some of our long, arduous experience. They had ruled out infection, cardiac, and many other things so they were leaning
toward autoimmune.  When something can’t be diagnosed or explained, it’s autoimmune. Unfortunately there are a lot of people suffering from their own body failing or attacking itself. Some are treatable, but many are wait-and-see and trial-and-error.  There is no textbook or set of rules they play by nicely. Many patients are seen by a series of doctors who think it is all-in-their-head. When Jake was younger and heavier, he played basketball and baseball.  He had height, size and potential, but he was always out of breath.  Dave thought he was out of shape. You have to work for it, Jake. Little did we know that his body was his own worst enemy.  My friend is going to Mayo because they haven’t been able to pinpoint anything, not even autoimmune. The first team to examine her is the infectious disease team. Like Jake, it is all too possible that there could be a bacteria, virus, fungus, or parasite hidden within her wreaking havoc…

Elvis

When I was a little girl, my mom proclaimed that she wanted Elvis to sing “When the Saints Go Marching In” at her funeral. Weird I thought as I marched around trying to imitate Elvis. Years later this topic came up again. We can play Elvis on my boom box in the church… Later I was impressing my parents with my ability to pull up any song on the Internet and play it back on my phone. We made a play list of Mom’s funeral songs.  “I never said I wanted ‘When the Saints Go Marching In’.” “Yes you did- I clearly remember it.” My dad shrugged his shoulders, “I’m staying out of it- I have no idea what she said.” “I might have said, ‘How Great Though Art’  by Elvis.”  “Ok so which is it?” “Well clearly ‘How Great Though Art’.” Whatever- I know what she said, but I corrected the funeral Playlist.   When the time came, I knew exactly who to call. One of my good friends was going to be our perfect “Elvis”. My dad freaked out…I think he literally thought I had asked my friend, a young man with a deep, beautiful voice to impersonate Elvis. “Meanwhile could you learn Ave Maria in Latin?”  A day later a friend called and said that mother had asked her to sing “On Eagle’s Wings” at her funeral. Then my sister wanted her friend to sing a song.  On Christmas day, 2 days after my mom died, my dad was about to flip. It was getting too complicated, and he couldn’t get past the Elvis impersonator. Trust me, Dad…   My sister’s friend beautifully sang “Amazing Grace” as the honorary pall bearers- the original Bridge Club walked in. Our friend, who mom had personally chosen, sang “On Eagle’s Wings” as my brother carried my mom’s ashes and we walked in. My closest-thing-to-Elvis and dear friend sang “Ave Maria” during communion, and we walked out to “How Great Though Art “. My uncle delivered a lovely eulogy, and many people were gathered to give my mom a beautiful farewell. She knew the songs she wanted to have sung, and we were blessed with all the beautiful voices to sing them. Christmas sounds like lousy timing, but it was her favorite time of the year, and somehow it just seemed fitting. It was a beautiful funeral…

Plans

Long before my mom died, she had made it known her wishes. Everyone should be so considerate. My grandparents pre-planned and paid for their funerals as well. Mother liked to bury people in nightgowns. When my grandma became ill, Mom bought her a beautiful silk nightgown- cream with pink sweetheart roses adorning the yoke. My grandma never wore it, and it made my mom mad. When she finally mentioned it, my grandma told her that she wanted to be buried in it. As weird as it sounds, it was pretty classy. I started searching online, Marshall Fields on Michigan Avenue was gone, for the right nightgown a few years before my mom died. I had trouble finding one. I came close, but it just wasn’t perfect. My mom did not want an open casket.  The family could view her, but not anyone else. Later she went to a Catholic funeral of a friend that changed everything. This lady was cremated.  She was carried in a simple, beautiful wooden box by her son. Mother had never seen anything so classy- she just didn’t think the Catholic Church would approve of cremation. Yes- they just want the remains buried as quickly as possible. I ordered the box from the Monks who made it in Iowa. It was in my closet for a couple of years. Mom wrote her own obituary that paid homage to the nurse who helped deliver her-to a cheer they still do at our high school- to her bridge club of 40 years. Mom, we are going to have to take out a full page ad for this obituary… I let it drop. We condensed her words for the paper, but we cherish her own, handwritten one. She was cremated, and no one in the family wanted to view her body. It was cheaper to do it that way, so I told Pete, the undertaker, “That’s what we’ll do for dad too!” Now wait a minute… my dad started to protest. He had agonized over picking out my grandfather’s casket.  He chose what I would call the most beautiful casket I ever saw, but it was the “pine finish”. He just couldn’t get past people saying that he’d buried his father in a pine box. Everything about my mom’s funeral was beautiful and perfect because I knew it was exactly how she wanted it to be…

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…