In a fog…

The past 2 months have been tough. As if the move and starting new jobs wasn’t enough, watching Jake suffer trumps everything. If it was just his eye healing from a ruptured cornea and surgery, it would be plenty. The membranes are still being absorbed leaving Jake’s vision blocked. It looks good. Both eyes look good… Dr. Rockstar inserted punctual plugs today. The eyes had recovered from the cauterization, but she wants the eyes to retain the tears. Less irritation. The eye he can see from is constantly sensitive to light. He has 20/20 vision, but it’s often blurry. It leaves him bored and frustrated. She believes he won’t need a corneal transplant now.  The prednisone has wreaked havoc on his body. He is extremely bloated and swollen. He has lost all muscle tone.  It is uncomfortable. They have added, stopped and changed his medicine so much. We spent last weekend at my dad’s. Jake was confused and couldn’t put his thoughts into sentences. We were in communication with his doctor, and we agreed avoiding the ER was best. Sunday night I gave him a medicine that had been stopped abruptly. Scientifically it should have been out of his system, but the addiction was not. Lyrica can be nasty, but once I started it again, Jake was back cognitively. The medicines he is taking all have their nasty side effects, it’s hard to tell what is causing what side effect. Today I questioned one of his inhalers. The doctor was agitated because he couldn’t match the name brand with the generic-he was confused. He had stopped one inhaler a month ago because it was too much steroids. Today he insited he use the fluticasone inhaler because it is a steroid, but he called in the wrong one two days ago. It isn’t called fluticasone, it is called Flovent.  He tried to turn it back on me. From now on, let’s use generic names. Jake was out, the pharmacy sent a refill request, he approved it. Not my fault, but thank God I questioned it. THEN he failed to call in the correct one this evening. I miss talking to Dr. S. on a regular basis. We saw him today and discussed all of Jake’s meds. Even though he doesn’t prescribe them, he considers them all. I’m glad he [the prescribing doctor] stopped the antifungal. It makes the 80 mg of methylprednisolone more like 120 mg. That dose is very dangerous. The prescribing doctor had him start and stop the antifungal 3 times the past 2 months. Dr. S. continued,  I agree with your thoughts that the Lyrica withdrawal caused the confusion. We discussed safely tapering the dosage. It scares me that his prescribing doctor questioned my medicine managing skills. I have called and checked and re-checked his medication many times. The problem is that I don’t know if the nurse even relays the message, and I know without a doubt the doctor doesn’t listen to me.  Today he took so long, Jake fell sound asleep. Jake sat up but was still groggy when the doctor declared,  “I don’t think you are doing enough to get better.” Ok, had we not just established the concoction of very powerful medications were making him feel terrible? As bad as the chemotherapy, I would venture to say. I was mad enough when we left, I vented to people all the way from Indy to Taylorville.  I am thankful the medicines haven’t caused more devastating results. This is not the first time Jake’s mental status and health have been affected by his prescription medicine. Hopefully we will continue to taper and the graft vs host will subside…. 

Moments of panic…

Jake called a few Saturdays ago. I didn’t immediately panic-he’d been calling more regularly since we’d moved to Taylorville. Mom, I’m not doing so good. My heart dropped and panic set in. After a few sentences, I decided Jake felt overwhelmed by his final projects. I lectured him about not giving up. You don’t understand, Mom, something’s wrong, different. My dad went over to see him. The day wore on. I was worried to death. Meanwhile Jake called both of his doctors. “Jake, your steroids are too high.” This made me mad. Every week I had contacted his nurse by phone or email and questioned his medication. I decided to drive over myself. It didn’t take long to determine that he needed to go to the ER and have his “good eye” checked. It had been so light sensitive, and Jake felt something was different. At 4:30 PM IL time, we headed to Indy.  We waited and waited with drunks who were belching, screaming, and bleeding. I heard the doctor talking as he stitched up the result of being hit in the face with a beer bottle. I stretched out on the hard, cold floor next to Jake’s bed. At 4 AM, he was released. His eye looked ok. This past weekend, the scenario was repeating. We were texting his doctors, googling graft vs host and tied up in knots of panic and fear. We were headed from Taylorville to Indianapolis when both doctors agreed to see him the next morning. Jake and I high-fived that we wouldn’t have to spend the day in the ER. The dryness in his good eye, the effects of graft vs host and the wicked side effects of the high dose of steroids were all to blame. As if the cornea rupture and long healing process wasn’t bad enough. He still can’t see through the membranes she stitched over the cornea. Hopefully soon….his good eye is extremely sensitive to light, blurry a good deal of the time and irritated. He constantly uses several eye drops and is back up to handfuls of pills. The prednisone that once saved his life is causing dizziness, vertigo, lightheadedness, panic attacks, weight gain, aches and pains, and other unpleasant side effects. Jake, who 45 days ago had moved into an apartment and was taking 3 classes at Rose, is back staying with us, can’t drive and had to sit out this semester. When he had to drop Chemistry, they charged 150.00. We are still waiting to see the charges at Eskenazi hospital for the emergency surgery cost, and we don’t know the extent of the damage to his eye. I had driven home to close on our house. I said goodbye to our home of 19 years and wondered if we had made a big mistake. I like our new home, town and job, but I cannot escape feeling guilty for not being 100% there for my family. My dad has taken Jake to several appointments. It’s not fair, the drive makes him nervous. But he wants me to save my sick days. He knows it’s hard to make sub plans. I took Jake to Indy on Tuesday. It was good-the way it should have been. I’m comfortable navigating and talking to the doctors. My students missed me, and were wide-eyed and empathetic when I told them why I was gone. I hadn’t said too much about Jake. For the first time in awhile, I couldn’t talk about him- I was too emotional, scared. We have a plan though. The prednisone will be tapered, but another medicine will be added to hopefully control the graft vs host disease. Once again his doctors are dealing with unknowns. They had never seen a cornea rupture because of gvh disease. This has been a tough one. Jake had started to feel good again for the first time in years. This made his side effects feel much worse this time. It’s been awhile since I have felt this scared, and out of control of a situation. I haven’t been able to find the blessing in disguise in this one…

Dr. Worst Case Scenario 


Jake is sick of me. I baby him. I won’t let him stay alone in his apartment. Trust me, Jake. I’d give anything for you to be back in your apartment. Maybe after this week, it will be more like normal for him. But it won’t. We’re not supposed to talk about his vision. “We talk about his vision later. Right now, we save his eye,” his itty, bitty, rockstar opthamologist surgeon commanded in a thick Asian accent. I had to listen carefully to understand her. She is the most “worst case scenario” doctor we’ve ever had. I lectured the junior doctors when she left the room. We don’t need all the worst case scenarios. We are scared enough. Just tell your patients what they need to know right now. Cross that bridge later, if you have to, into what could happen- only if it happens. We are already worried and scared enough. We don’t need to worry about what could happen. But she’s the best…. I understand, but our doctors have protected us. It’s not a bad thing… She smiled after surgery-it had gone well. She wasn’t promising anything. She had never worked with a situation quite like Jake’s. Normally she would have done the corneal transplant immediately, but the steroids complicated things. She was certain his body would likely reject it. After consulting with her mentor from Boston, things changed quickly. “I must cauterize his tearducts now. Then we go to operating room.” Jake screamed with pain. She finished his good eye, but before she continued, “Go to ER downtown now. Tell them he go to operating room now.” Unfortunately there was a trauma ahead of Jake. Jake was anxious to be put under. He had been in pain for a few days, but now he was miserable. The plan was to stitch layers of amniotic tissue over the cornea to hold it while the hole healed. The tissue would be slowly absorbed by the body and eventually he could have a transplant. That week in the hospital, everyone was very cautious and reserved. We were told Jake may spend 3 weeks in a rehabilitation center. It was stressful not being at IU. If nothing else, Dr. S. would stop by and help put things into perspective. We had the weekend without doctor visits. I was anxious for today. Everything looked so good, they don’t want to see him for a week. What? I fully expected to make 3 trips to Indy this week. The only explanation I could fathom was they must have worried Jake would reject the graft or the other eye would be affected by graft vs host. They were so verbal with the worst case scenario, that I’ve not been this scared since the meningitis and the ICU. (They hadn’t given any scenario because no one expected him to live.) Before we turned onto 10th street this morning, Jake took his patch off. Oh my gosh! If I look to the side, I almost have a sliver of clarity. It’s small, but it’s there. Jake’s professors emailed him back today and both agreed to let him finish the summer online classes. Mom, you may need to read to me. Tonight Jake is staying alone in his apartment. I lined up his drops and made a schedule. There are 6 drops he uses 12 times a day. The healing will still take weeks. The membrane has to be absorbed by his body and the contact bandage will eventually come off. There will be permanent damage to his vision. Ironically Molly is practically blind in one eye. She has never known any different and adapted very well.  Jake made an emoji of himself wearing an eye patch. He’s got a great attitude. Once again, he’s presented doctors with something they’ve never seen before, and hopefully he will continue to exceed their expectations…

Two sides to every story….

Normally I would keep things like this private, but my name is being bashed all over town and FB, so I figured I may as well put my side out there. Especially since people started contacting my daughter to use her for information. We are moving. We were lucky enough to be able to buy a house without selling our house first. We hadn’t listed our home, but people contacted me with interest. I personally showed my house to 4 families. I didn’t pick or choose. 2 of the 4 showed a real interest. Both were in communication, but one was more quiet. I was advised by 2 realtors on how to handle the situation. It kind of surprised me. Even if you accept an offer, there will still be a turn around clause…. it hadn’t occurred to me that I would still be able to entertain offers until closing. One family threw out a couple of offers. I said I wasn’t going to counter offer or negotiate anything. Meanwhile a realtor called me. I didn’t sign any contracts with her either. Check with me every Sunday… I knew how badly one family wanted our house because she contacted me daily to update me on the progress of the showing of their house. Their deal was contingent on selling their house. The first person I showed the house to called me unexpectedly last Sunday. Have you sold your house? It’s all over town that you did…. no there was no sale, no formal offer, no deals in place. That next day, she went to the bank. They were able to offer full price/no contingencies.  I thought long and hard. I could get a bidding war going! I talked to my realtor sources. The no contingencies was huge. I heard stories of sales being held up for months because of the sale of the homes. I thought about letting the family shoot me their best offer. So far their unofficial offers had been far below asking price, half the closing costs AND contingent on the sale of their home. I knew they would pay full price, but the contingencies would not go away. I knew that in 6 months we could still be hung up by the sale of their house. I decided giving them a  chance to get our  house was moot. They could never beat the offer we had. Of course I knew they would be devastated. I feel horrible. But then you get to a point where you see yourself getting smeared on FB. People are texting your best friend and your daughter. Neighbors are not being neighborly. It’s a buisness deal. The house was not sold out from anyone. If I sell the house today for a better/cash offer, it is still a business transaction. It became personal because I showed the house and I allowed conversations with the interested parties. I cheered for them when they were showing their house. I was truly rooting for them because ultimately I need to sell my house. It’s nothing she has said about me that upsets me. Of course she is mad/hurt/devastated. I know that. I am truly sorry it didn’t work out. What bothers me are the negative, nasty comments by people who don’t know the whole story. Here is my opinion. If you claim you wouldn’t have done the same thing, your either a liar or an idiot. Today 2 realtors are stopping by, their choice. They know my deal could fall through. They want to be ready to list if it does. It’s ultimately just business…

Big changes

I wish I could tell you there was some big scandal, but there is not. We, after 3 incredibly difficult years, are making a big change. We were unbelievably lucky to emerge from our tragedy with our son.  We were tired, worn out, numb. We were going through the motions. 10 years ago, Dave pursued a job as a Superintendent. He had quite a few interviews in some very nice communities. He was a finalist several times. Finally one day I said, “Maybe someone bigger is in control. Maybe this isn’t our time to move”. I believe with all my heart that I needed to be here for my mom, and the kids needed to be here to graduate with their childhood friends. They will always have their hometown of Paris. Absolutely no regrets. I said I was willing to move, and once when Jake was a baby, Dave accepted a job as assistant principal in a town 3 hours up the road. We were excited. Then we realized we were looking at homes like the ones in Paris, but triple the cost. We concluded we wouldn’t be able to afford to live there. We came home, and Paris was good to us. Dave has had wonderful opportunities in this town. Opportunities most would never have in education. We will always be forever grateful. Watching your child fight for his life and staying 100% dedicated to your job is no easy task. My husband did it well. The first cooperative high school and that beautiful complex north of town will forever have his name on it, and he should feel proud. He’s done a great job. Not everyone has always liked or agreed with all of the decisions that had to be made, but he and his boards worked diligently and honestly to put the best interest of the kids first and foremost. He still had that itch to fulfill that last goal of his educational career. He has done the job of Superintendent many years, but he didn’t officially hold the title. Director was a title he helped choose. I encouraged him to send out resumes this year. I even choose Morrisonville. I believe things happen for a reason when the timing is right. Jake had already signed a lease on his apartment in Terre Haute. He will start his class at Rose in July. He’s ready to spread his wings. My dad, whom I was most sad to tell, is very active and social. We talk on the phone everyday, and that won’t change. I became enchanted with Taylorville my first visit and was excited to make an offer on our house before Dave even had a chance to see it. It’s  a strong Catholic community, and my goal is to get back to church. Molly will only be 1 hour away. She has come to understand that won’t be too close; it may even have some advantages. My heart skipped a beat when I learned there was a science opening in Paris with no applicants. That feeling made me reach out to a small school near Taylorville that needs a science teacher. I will need the company of the students and the ability to interact, and let’s face it, talk all day since I won’t have my best friends with me. The thought of moving used to make me physically ill, but this has given me a burst of energy and excitement that we both needed.  No one is mad, there are not hard feelings, no scandal. It’s true that Dave still had a year left on his contract, but the board did not hold him to it. Like Mr. Zuber said, and Dave continues to say, “The one thing you can count on in education is change…”  We wish good things and continued success here in Paris- thank you!

Jenny

It didn’t take long for us to notice her. She and her family were pretty close to my sister and me on the beach. I wonder what kind of cancer she has? Other than her bald head, she looked healthy. Do you think she’s pregnant? “Oh surely not.” Her daughter was barely a year old. “I bet they discovered she had breast cancer when she was pregnant. Hopefully she’s done with her treatments, and this is a celebratory vacation…” They seemed happy. “I will ask her if I get the chance.” Are you sure she would want to talk about it? “She does…” The next day, she got close enough for my sister to ask if she and the gal she was with were sisters. No. She came over and leaned over and explained their friendship. I spoke up, “This is our first time back to the beach in 3 years. My son had leukemia.” She sat down in the sand next to me. How old is he? How is he? That’s way too young! She took off her hat to show us her bald head. I’m not sure what she said first. We think she said it started as melanoma. How did you know something was wrong? After the birth of her daughter, Bentley, she had a numb spot on her inner knee. The doctor thought it was the after effect of her epidural. The cancer had already spread to her lungs. The first thing she asked her doctor, “Was it the diet Coke?” My sister and I acknowledged her anxiety, but we all knew now that it was a gene mutation. She had been given 3 to 6 months. She had outlived their predictions and was optimistic about a new drug she was taking. It targets the bad cells, but leaves the good ones alone. Their trip was only for the long holiday weekend because she had to get back for chemo. They found more tumors in the meninges. I knew that location too well. The tumors were in the lining of her brain and spinal cord. There is one large tumor wrapped around my spine and smaller tumors everywhere else. I have had radiation too, but this time it’s not bothered me. I have 3 good weeks, then a bad week with chemo. At that moment her husband was trying to convince Bentley to put her feet on the sand. Jenny started video taping it then seamlessly handed me her phone. I videotaped her holding her arms out, happily encouraging Bentley to walk on the sand. She thanked me for capturing it on tape. It became apparent that she was trying to record as many memories as possible. Later Molly, Jessica and Tori were sweet-talking Bently. Jenny begged them to stay out of tanning beds. She promised to pray for Jacob, and we promised the same for her. 

Good luck, Jenny and many prayers… 

Independent

I hear parents complaining often about their stubborn child. Is it your second child? Usually it is. When I was growing up, I was different from my other siblings. I was headstrong, stubborn, a pain in the ass…constantly. I grew up feeling bad about myself, and it wasn’t until I started teaching that I realized that I was born the way I was, and it wasn’t actually a possession of the devil. There were other kids out there just like me. You could have yelled and tried to beat me into submission, but it most likely wouldn’t have worked. When I gave birth to myself after having the perfect first-born child, I knew how to handle her. Everything, everyday could have been a potential battle, but I chose it not to be. Now Baby is home briefly from college. We wondered if she would be able to get out of bed and get herself to class. We worried that she would lose her homework, lose her way home from class or Walmart. Should we have held her back because of her August birthday? No, we absolutely had to send her to school- she was driving us crazy. At 18, it was easy to leave her at college because we were so mad at each other the day she moved in. I was still mumbling under my breath 2 hours into the car ride home. But within a few days, she texted. She liked her professors in Chemistry and Criminology. Whew…. Molly has finished her freshman year at the top of her class (take that Justin Woo). She not only got straight A’s, but she set the curve over and over again. There was supposed to be a curve on the Chem 2 final, but Molly got a 105%. Maybe she curved it according to the next grade- an 82%. She took higher level biology and chemistry. Now she has to decide between university or college physics and Calculus 1 or 2. She will have enough hours after her summer class to technically be a junior. When she earned a 100% on her Bio test, her professor lamented that no one had ever done that in the 25 years he had been teaching. Even in her 200 student lecture classes, Molly was on a first name basis with her professors. This one talked to another colleague about Molly being her research assistant. Normally those spots are reserved for graduate students, but Faith asked Molly to join her for a three year research spot with the plan to get Molly published before she graduates. She now occasionally dog sits her Labs and they run together on Wednesdays. She has an interview at Shriner’s Children’s Hospital and has sent out applications to scribe. I’d never heard of that, but she will be assigned a hospital, follow doctors around and take their notes for them. She loves her new grown-up life. Last night she was telling me her plans the next few weeks. It reminded me of myself. A few days at home was fine, but then I wanted to take off and be with my new college friends. My parents always let me because it was easier than not. But she has far exceeded anything that I could have ever imagined. Everything she has done, she’s done on her own. In first grade, I built a replica of the Court House for Jake’s project, but when Molly came along, she made it clear I was not helping. It was hard for me to sit back and watch her build her ocean diorama, are you sure you want to put that there? I shut up, and secretly worried how hers would look next to the parents’ projects. At least everyone would know that Molly did her own, or at least I hoped they would. That was the beginning, and she has never looked back, never asked us for help on anything. I’d like to think that her independence and confidence was nourished way back when I allowed her to wear what she wanted, cut her hair the way she wanted and just told her she was beautiful…

Bubbles for Brody

Two days after Jake celebrated his first birthday of his new immune system, Brody Stephens died. My heart has been heavy, and I feel like someone is sitting on my chest. I have gone on with everyday life, but I think about Brody a lot. At any given time when Jake was hospitalized the past three years, I could have taken the tunnels or walkways over to Riley Children’s hospital and met him. When we learned Jake was going to be hospitalized for so long for the transplant, I immediately asked if he could go to Riley. I was thinking about myself. We had been in Riley before, and I knew the rooms would be much more comfortable for Dave and me.  The doctor looked at me sideways and then grinned. He immediately took Jake, who was using a Hoverboard because it was cooler than a wheelchair to get around, and me to the 5th floor BMT unit to show us around. The old wing of the hospital had been updated, and it was nicer than the rest of IU Health, but it wasn’t as nice as Riley. What I didn’t realize at the time was the sadness that we would have been surrounded by everyday. Jake was a baby at IU, but at Riley, we would have been surrounded by children who were dying. Everyday. On the Be the Match FB page, I came to “know” and love Brody. He was diagnosed with AML leukemia as a toddler. A few months before his 5 year anniversary of kicking cancer’s butt, (the magic milestone to officially say you have beaten and survived cancer), the leukemia returned with a vengeance. Brody would have to have a stem cell transplant. Most people have to have the cancer return before the transplant is considered. “The benefits of the transplant do not outweigh the risks”. Jake was unique. His immune system was flawed, and technology and advances had allowed them to know that by 2012, and they knew Jake had no other chance.  But had Jake been diagnosed with AML as a kid, it would have been a different story, and like Brody, the cancer would have returned. There were 5 potential biological matches in Brody’s immediate family. He had 3 older brothers and his parents. No one matched. I am not sure if they couldn’t find a match for Brody because he was given stem cells from cord blood. In today’s medicine, that is the 3rd choice. Biological, non-relative donor then cord blood. Prior to Brody getting to this point though, there were many complications. He had become septic twice, and a part of his intestines had been removed. When Brody was diagnosed the second time, they could not get him into remission. After Jake’s chemotherapy in December of 2015, it never occurred to me that he might have to have more rounds of chemo. Brody had 5 rounds of brutal chemo. Several times, the chemo was given for an entire month. This required hospitalization. During these hospitalizations, Brody would meet new little friends, and he would see some of these friends earn their Angel wings. It had to be heartbreaking. The day he rang the bell and got to go home after chemo, he also lost his dear little friend. I was irked to spend a week in the hospital this last time, but it wasn’t uncommon for Brody to be hospitalized for a hundred days in a row. They never reached complete remission, but they decided to go ahead with his stem cell transplant. Brody had engraftment, but his case was very complicated because technically the leukemia cells were still present.  He was so sick with complications from the chemo and transplant including graft vs. host disease, SOS (a condition where the small blood vessels in his liver were blocked), and his right lung collapsed from fluid build up.  He kept vomiting, and had trouble gaining his strength back. They reached out to other hospitals for advice. Brody was approved for a trial therapy which included receiving t-cells. It was not FDA approved yet, but it was his best chance for his body to be able to fight. He spent many days in the ICU and had surgeries to try to determine the cause of and correct  some of his complications. He was fighting several viruses. The BK virus affects the bladder, and is pretty common after chemo. Jake was irritated by the virus. Brody had to have stints put into his kidneys and go on dialysis because of it. On the rare occasions he was allowed to go home, Brody’s love was basketball. He dribbled in the hospital to stay up on his game. He became friends with many of his basketball heroes. He was visited by several. In March he traveled to Oakland to meet the coach and players of his favorite team. He was a fighter. He had tremendous courage and the will to grow up with his brothers and play basketball. He fought leukemia twice, and he was proud to say he beat it. His new, very fragile, not perfect immune system could not beat the viruses that plagued him from the very beginning. Everybody who knew Brody loved him. He had millions of prayer warriors, but maybe this was God’s plan all along. It’s hard to accept that our prayers were answered, but their’s seemingly were not. The science part of my brain wonders if there had been a gene mutation in Brody’s fetal development like Jake’s that made this inevitable. Would things have been different if one of his brothers had been a perfect match? It doesn’t matter. All that matters now is his family picking up the pieces and moving forward without Brody. Rest in peace Brody Stephens ( December 19, 2008- April 29, 2017) age 8…

7 days

This has been a long week. Jake had tapered off the prednisone for his graft vs host awhile ago, but shortly thereafter, he became short of breath. He was starting to work out a little and blamed it on being out of shape. Hmmm… I let it go, but it remained tucked in the back of my mind. As Easter weekend approached, I knew the shortness of breath was something more. Jake felt good and looked good. He went to a party Friday night after work. He was up way too late and had been in a hot tub. The next morning he slept and went to work later that day. He commented that he felt worse but not bad enough to skip work. My mind was spinning by then. I knew he needed to see his doctor, but I also knew Jake wasn’t going to willingly miss school. “I have 2 big tests this week.” Do you want to go to the emergency room this weekend? “God no!” We both knew what going to the ER would mean. It would definitely mean an admission. I deep down knew that going to see his doctor on Monday would mean the same thing. For Jake there wasn’t going to be a trip to EZ care with a z-pak and Medrol dose pack. Not anymore. Easter Sunday I was at my Dad’s to use his oven. Dave called. Jake had gotten up and felt like he should go to the ER. After evaluating the situation, we decided they could wait and have dinner with the cousins, then drive to Indy. “The ER doc thinks he has a touch of pneumonia. They are admitting him. They have to find a bed.” I panicked. I assumed he’d be back on the bone marrow transplant unit. Thank goodness he was. As expected, they started him on broad spectrum antibiotics. Unfortunately they turned him over to infectious disease. This wasn’t our first rodeo with them. It was a team of bright eyed junior docs. I knew the routine. I didn’t worry too much about what they said until they mentioned lung biopsy. Wait a minute. I am sure he has graft vs host. He needs prednisone. Can’t they tell that without a biopsy? My heart sank. “We can do the bronchioscope, and it’s possible they can do a needle biopsy at the same time. We feel it’s viral or bacterial.” It’s not, but I know you have to follow protocol… We continued to wait. Meanwhile Jake was receiving nothing to ease his shortness of breath.  “We really don’t see any differences in his lungs from his last x ray. The tests so far have come back negative.” Of course they have. I don’t understand where pulmonary has been. Why haven’t they been here? I know this isn’t your fault, but we’ve done this before. Infectious disease walked away 3 times when Jake had the bacterial infection. Pulmonary left sooner. It took the neurologist just caring enough to figure it out. My kid doesnt have an infection. He has been sick his whole life. He needs prednisone. If you need to do the scope, then why aren’t we doing it? Why hasn’t someone at least given him a breathing treatment? It wasn’t this guy’s fault, but all I could see was more time slipping away. Jake was within 2 weeks of finishing Calculus 2 and Physics 2, and my heart was breaking for him. Dave came over. I needed a break. Deep down, I was starting to worry that the cancer was back. His BMT doctor came in and expressed hope that it was viral or bacterial pneumonia. Graft vs host could cause permanent damage. But they started moving forward with tests.  A sonogram and CT scan were perfomed and the scope was scheduled for the next morning at 8 am. At home I was lonely and still worried. I went back the next night. The scope went well. I was much nicer to the infectious disease team the next time they came in. I went back to the first grade. I know you don’t care, but I’m going to tell you anyway. You might never see another case like Jake, but what if you did… In the meantime, pulmonary and respiratory had also been in. A professor and friend from Jake’s university offered to help him finish his semester. Everything from the scope came back negative. There was no evidence of damage from graft vs host. It had been caught early. He was finally given 60 mg of prednisone. His little cheeks are already swollen, but he doesn’t feel short of breath. As always, he’s handled this with grace. He plans to go to class tomorrow.  It’s Sunday, and he’s going home. A familiar face from last year stopped by. He was a fellow, but now works here full time. He wanted to say Happy 1st Birthday to Jake. April 27th was when he received Molly’s cells. He and I agreed that it was remarkable that this had been his only stay in the hospital. I stopped writing at that point because the nurse came in to go over discharge. We are now home. Jake is already showing the side effects of the prednisone. He’s anxious to talk to his professors.  He’s upbeat and hopeful. Thank God it was only a minor setback…

Lucky

Today at the hospital, we saw a young man who looked familiar. He was with his wife and 2 little girls in the cancer center. Jake hadn’t seen his doctors since December, and this was a routine visit. I asked the man if it was possible that he had visited us in the bone marrow transplant unit last year. A big smile formed on his face. Definitely! He had stopped by to give Jake encouragement that he could endure, survive and thrive after a BMT. The difference though was he had received his own stem cells. They had found a mass in his chest 4 years ago.  He was exercising and was short of breath.  His own stem cells had been taken to help him endure the chemo. There weren’t the same risks as with a donor transplant.  Most of the patients at that time were getting their own stem cells. It made me feel lonely and scared. I hoped he was back for just a check up. He looked good. He was interested in Jake. “How are you doing?” I asked. The cancer had returned. This time it had been in his lungs. He stayed positive though. They were trying a new treatment, and he only had 2 more rounds. He had responded well. I immediately thought to myself, wondering if he had some unnamed gene mutation that would cause the cancer to keep coming back. Each time with a vengence that would eventually take his life far too young. Science knows so much, yet so little. It has come so far, yet there is still much to be learned. Another young man recently died from an unknown, unnamed disease. Maybe someday it will be discovered. Chances are his family may never know. We were lucky. A doctor was able to identify Jake’s immune disorder in 2012. It didn’t make any difference, in fact it just complicated his test results. They started the chemo not knowing for sure that he even had AML leukemia. It was an educated guess, and everyone hoped for the best. That is what we have now. We have experiences and educated guesses. There are drug trials and plenty of errors. There is still much more to be discovered. The process is slow and expensive. Maybe someday, Jake’s cause will be given a name. It won’t matter. Jake was able to have a cure. We were just extremely lucky.