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.

Columbine

Molly was irritated when I posted that we were at a restaurant in Denver. “Mother, why do you post everything we’re doing? No one cares…” While she very well could be right, I didn’t care. If someone was irritated by my post, they could ignore, scroll past or unfollow me. Within minutes, I received a personal message from a gal that I had not seen since junior high. She only lived in Paris about 4 years, but I didn’t forget her, and I was glad she had sent me a friend request. She lives in Miami, but she saw my post and had a personal connection to the University of Denver.  Within the hour, I was talking to the Dean of Admissions. Molly had already been accepted, but now the Dean “would love to meet her.” “Her credentials are very impressive….” “If we need anything….”  You can bet that if she ends up in Denver, I will appreciate having Todd’s name in my contacts. I held my phone up to Molly and said, “THAT is why I posted that on FB, Molly. ” She had posted a picture and realized a friend from college was also in Denver. It makes the world seem smaller. There may come a situation when we need to reach out to a familiar face somewhere. I have been surprised by the friendliness of the people we met in Spokane and Denver. Sometimes with the bad things we see and hear about around us, it’s easy to forget that there are many kind, helpful people around us. Twice I asked strangers for help on this trip. Both times it saved us time and frustration. It was embarrassing for Molly, I’m sure, but I hope she saw the value of asking for help. She noticed one of the streets near the campus was named Columbine. She associated it with the school shooting. “Did you know that the Columbine is the state flower? You will likely see it a lot. It came way before the shootings.” It’s sad that she only associated the name with something horrific. My grandma always had Columbines in her garden. “They have to grow from the seeds. You can’t divide them,” she had told me once when I wanted some for my yard. She saved me the seeds, and I planted them in my yard. So just like my FB post, something good was shared…

Good sport

Last night, Grandpa and I went to Unity to watch Griffin play one of his last basketball games. He’s one of 2 seniors that stuck it out all four years. They started as freshmen with 15 players. He’s not the “star” of the team. There are a couple juniors and a sophomore who start, leaving Griffin to be the 6th man. He’s on the bench most of the game, but will go in for a few minutes to give the other guys a break. He’s the guy who claps and cheers and high-fives his teammates. He goes to practice, plays hard, and listens to the coach. At 5’9″, he accepted a long time ago that he wouldn’t be the star of his team. He didn’t want to quit, although it had to have been tempting. He’s put in a lot of hours, and I imagine he’ll be glad when the season ends. He has other things to focus on. He’s ready to go to college. He’s a finalist for the Presidential Scholarship. Griff did really well on his ACT, and is looking toward his future. My sister and I have fun at the games. I say things to keep it in perspective, but mostly just funny things because we know in a few months, high school basketball will be just a memory. For some, it will be the best it ever was. We sat behind the team last night, where I enjoyed watching the coach get out of sorts and throw his arms around and yell. Luckily he didn’t yell at Griffin. My sister does not appreciate the yelling. It’s easier when it’s not your own kid. It doesn’t take long to see the personalities of each player.  There is one player that stands out. I like watching him play. I watched him talking to Griffin on the bench. His dad played college ball. I can only imagine the pressure he’s been under his whole life to live up to that. He may get to play at the junior college level. There’s another hot shot on the team. He’s a gunner, and he takes the ball to the basket. Every. Time. The problem is that he doesn’t make it every time. Then he throws a fit when he’s benched. The coach got down in his face, put his hand gently on his face and coddled him. “I haven’t seen this attitude from you in a long time. Look at the score.” They were winning by at least 30 points. I looked at Jana, “Let the other kids play.” That’s not how it works, and I knew it. Sure enough, within 1 minute, the Attitude was back in the game. The coach called a time-out to yell at his starters. They were fighting with each other. They needed to pull it together. NOW!” I looked at Jana. “Put Griffy in. He has a good attitude…” Then the coach commenced to yell at the bench about how the starting 5 needed to pull it together. I’m sure a lot of people look back with fond memories of high school sports. Those screaming coaches had their utmost respect. Best years of their life. For some people, I’m afraid it is. It shouldn’t be. Griffin was the first to jump up and shake hands with the other team. The coach has told Griffin that he’s a leader on the team. I told Jana that maybe the coach will give him a leadership award. She kind of giggled, “yeah right.” As I watched the Attitude move Griffin over a seat so he’d be next to the coaches who immediately started patting him and coddling him, I leaned over to my sister. “You know, this shows and says a lot about what kind of a man Griffin will be. One of the other mothers has commented that Griffin might not start, but he’s in National Honor Society. Her son is a starting sophomore, and she knows how frustrated Jana must be. After the game, Griffin came up to thank us for coming to his game. It was our pleasure. He played hard when given a chance, and even though he wasn’t the star of the team, I got to see qualities far more valuable…

Remission

Jake’s graft vs. host disease appears to be in remission. They are reducing his prednisone from 24 mg to 16 mg for 4 days and then to 8 mg. Anyone who has been on a higher dose of prednisone for an extended amount of time, knows how thankful we all are. It’s a nasty drug, but it has also been life saving. Jake has certainly felt the effects. His face is so swollen and red. He had nerve pain in his lower legs this weekend. He was quick to get angry the other day. These are all things I blame on the drug. But we do what we have to do. They had to get the graft vs. host under control. Thank goodness they understand what to do. Molly’s cells were attacking his liver. This may not be the only time this happens, but for now, it seems to be ok. On a positive note, it means that Molly’s cells have taken over. The transplant has been a success. Jake’s chances of getting leukemia again are now cut in half. We won’t know the long term effects of the prednisone, chemo, or the other drugs he’s taken for the past 3 years. There’s a chance he could develop another type of cancer. Hopefully his new immune system will destroy the bad cells. There is a chance he’ll have to have a hip replaced because of the massive amounts of prednisone he was given. But for now, we’ll take that things are good. His classes have been challenging, but he’s hanging in there. He’s still working a few hours at Kroger, and he hangs out with friends when he can. He wants to move out, be a normal 20 year old. He’s handled things remarkably. He’s had a lot of bad stuff handed to him in a short period of time, but he’s so hopeful. He has seen his new immune system work for him. Ironically Molly is very sick right now. She has a fever, chills, sore throat. She regrets not getting the flu shot. I asked her and reminded her several times. I should have drug her in like I did Jake. I had the flu shot, but was sicker after Christmas than I had been in years. Dave was too. So far Jake has been spared. Hopefully he’ll get back to feeling good again quickly, and the prednisone’s effects will wear off as well. This summer he wants to go somewhere. Anywhere. We’ll plan to make that happen, and we’ll plan to help him get back to school full time. Maybe by his 21st birthday, he’ll be living the life he chooses…

School of Choice

There has been a lot of uproar since Trump named his Secretary of Education. It is scary. Change is always scary, but educators dedicated to their job, flow with the changes, or they get out. I believe her changes could lead to an even greater number of people not wanting to become educators. People are worried about school of choice. They aren’t worried they will lose their job, but they are concerned by some of the problems they know will incur. Here’s one small example. A person I know called me yesterday to tell me about her week. 2 families had left their school. It’s not a public school. It’s a school where some families value the Christian education their children will receive, but it’s also a school of choice. A school where some families go because they have had issues with the public school. The 2 junior high boys had been in trouble before this year for behavioral issues. Nothing too serious, but enough to go see the principal. The P.E. teacher became rightfully frustrated with them the other day. He made some comments that he should not have made including something to the effect, “I wish it were back in the days when the nuns could smack their hands with rulers…” Oh how some educators miss the days of the paddle. When I was in first grade, I was swatted by the water fountain for messing around. She had one of those paddles that had had a red ball attached by elastic, and she grabbed my arm and swatted me mid-step, shooing me scornfully back to class. It didn’t hurt; I’d been spanked before. I was embarrassed. I doubt I told my parents because I didn’t want it again at home. One time in the second grade, I screamed and yelled during P.E. that the teacher was a cheater. I wasn’t the only one yelling, but my voice resonated. When I got home, I was greeted with a note card and a pen. “You will write a letter of apology!” This time, in this school of choice, it was different. The principal was informed that the teacher had threatened their child, and their child was afraid to return to school. OK, first of all, bullshit. Secondly, the child liked nothing more than to antagonize the P.E. teacher. What are you going to do about this? I demand an apology from the teacher. You must insure my child is going to be safe… Before an investigation could even begin, the phone calls and emails from other concerned parents started rolling in. Before anything could be resolved, the parents allowed the kid to stay home (for his own safety). Then they announced they were going to re-visit the public school. (The school they had fled before. This was their second return to this particular school of choice.) They kept demanding the apology. What about an apology for their kid’s behavior?  My child would never do that! My baby feels threatened and now embarrassed!”  Again, the kid didn’t come to school. By the end of the day, 2 families (a total of 6 kids) had been withdrawn from their school of choice.  The younger siblings didn’t even know what hit them. Pulled away from the comfort of their class, friends, routines. Nothing has been gained. The child has learned nothing, and mommy and daddy will pull you out of any uncomfortable situation. There will continue to be situations, and it will never be their fault. They will never learn the tools or skills to deal with an uncomfortable situation. My former principal once said that the average student nowadays will switch careers an average of 7 times. Not jobs, but careers. Is this a reflection of, when things get tough, we just run away? So with school of choice, might education be disrupted constantly by families jumping from school to school? We’re too soft. Trust me, I want nothing more than to fix my kids’ problems, but they’ve had to figure some things out on their own and deal with it. Yesterday Ellie, our gentle Golden, got a hold of a paper towel. She was tearing it apart. The puppy tried to take it from her, and she snapped at her. I’d never heard Ellie get mad like that. It surprised me. I almost intervened, but I just watched. The puppy backed off. She quietly and submissively just watched Ellie tear apart her paper towel. Was the puppy’s feelings hurt? Probably. Was the puppy embarrassed? Maybe? Did the puppy feel threatened? Sure. Did she worry that her life was in danger? Not at all. She learned a lesson of life though. Later they were wrestling and playing tug-of-war with a sock. They were friends again and everything was right despite me not getting involved…

Puppy love

It’s 8 am, January 19th. It’s 36°, and I’m sitting on the patio drinking my coffee. I’m perfectly content-it’s not raining. I’m watching the girls play. I’m a dog lover since my first memories of a black poodle friend named Pepper and an English bulldog name Bubbles. I grew up with outside dogs, and I found true dog love when we got our Golden retreiver, Holly. She was my best friend during my worst possible time-high school. My dad would lament, “You cannot sleep with that dog!” But I did. We snuggled in my twin bed, and I slept in weird contortions around her. I made sure she was comfortable. An odd, unlikable professor once proclaimed during a boring history lesson that “no one will love you, be as loyal, as your dog.” The only thing I remember from college classes. Our Gigi died this fall. It left a hole in our family. She was my girl, and she would have been fine to be the only dog. By accident, we stumbled upon a litter of Goldens, and Dave fell in love. Soon we had 3 dogs. After Gigi died, one would have thought the 2 big girls would have been enough. Ellie, our baby, craved the company of another dog. Libby is a loner and would only play occasionally. Our breeder posted they were expecting in October. Molly, Dave and I started texting each other. “Please?” “Do we dare?” “We are crazy!” “It would make Ellie so happy!” So of course we did. The four of us could not agree upon a name. Harper, Peyton, Emma, etc. Molly and I finally teamed up on Harper. “Harper is not a name,” Dave protested. “Hello?! Harper Lee-the author of my favorite book To Kill a Mockingbird.  We debated for 3 hours on the way to pick up the baby. I finally threw out Scout Finch. I had my book on my mind. Scout was the nickname of Jean Louise Finch the book’s narrator. Surprisingly we agreed. Miss Scout Finch is as precious as I imagined- all Goldens are.  And just as I expected, Ellie has taken to her new best friend.  They play and cuddle, and Scout watches her and learns. Dave comes up and puts her in bed with me and she snuggles around my neck. I’m in love. I doubt we’ll ever have just one dog again. They love and need us, but they love each other as well.

Looks

Some of Jake’s former teachers saw him the other day at the high school. I guess there was a debate as to whether he looked “good” or not. I can see it from both sides. He is certainly not the same kid that disappeared from their classrooms on October 23, 2014.  Jake had lost weight by eating carefully and exercising. He was on top of the world. He had a girlfriend, had decided to go to Rose Hulman, had started making about $30.00/hour delivering pizzas. He felt good, confident, the world was his. His attitude was better than ever, and he was prepared to make his senior year his best. Then, as you know, tragedy struck.  For some reason, my dad took pictures of him in the hospital just before he became incoherent. The months that followed wreaked havoc on his body. The surgeries, tests, prednisone- they all left their mark. There were weeks when he didn’t eat. When he came home, he was pale, scarred and chubby cheeked from the prednisone. He was very weak and in constant pain from the nerve damage he incurred in his feet. He didn’t get out much that summer before he started college. It was silly to think back that we let him go. I remember my dad being upset because Jake looked so pale. He was so tired. It never occurred to me that he was even sicker than the year before- it seemed impossible. He’d been on the brink of death- of course he was tired. He was trying to go to college-of course he was tired. And then blood tests proved that it was unbelieveable that he was still conscious. When they started the chemo, I thought about him losing his hair. His hair had always been longer, and he had prided himself on it. It had been partially shaved when the shunt had been placed. None of that mattered. His hair would grow back. He lost more weight and the graft vs. host disease affected his largest organ- his skin- immediately after the transplant. His eyes are dark, his skin looks dirty, he has scratch marks where he has itched during the night. His hair has grown back to the point he needed it trimmed. He is still pale. The hopes that we’d spend time outside while living in Indy faded. I hadn’t expected Jake to feel so bad for so long. They chemo was brutal. It has taken a long time to recover from it. Now he is battling graft vs. host on the inside too. The prednisone has actually made his face fill out to where it looks healthy. When he first started working at Kroger, I told anyone who asked about him. I knew people wouldn’t recognize him. A friend told me that Jake had thanked them for recognizing him and talking to him. She said it made her want to cry. Jake spent many days and nights alone- of course Dave, Grandpa, or I was with him, but without the company of friends, he was very lonely. He has done a good job of reaching out to friends. He’d like to date again. Maybe people are nervous that he is still sick or fragile. His new immune system seems to be woking beautifully. I predict in a few years, no one will be able to tell he’s been through this ordeal. I have said to people, “You may not recognize Jake,” He does look different. One could argue that he looks bad, comparatively. I have turned the corner, along with others who’ve seen him the past year. “He looks good!” I now say. He’s come a long way. He still has a ways to go, but he’s happy, motivated and getting stronger. His attitude is amazing. He’s becoming very independent and is driven to get back on course. He’s beautiful…

Let it go

30 years ago I had the best closet to go through for dress up days and sorority parties. My friend, 60 years my senior, had saved about everything she owned. I barely remember her shopping for anything new except for my wedding. Her wardrobe to me was a 70’s goldmine. Years later after Katrina, she declared that she wanted to box up some clothes for the victims. Unfortunately our conversation turned awkward when I laughed thinking she was joking. No matter how bad things were, no one wanted her polyester pants suit from the 70’s. They’re perfectly good clothes. They had been well taken care of, but they were horribly out of style. Later I was helping my sister move to her first apartment. We had huge closets, and she had a lot of clothes.  I pulled out a sweater.  Ok, this has to go! No, you aren’t going to wear it. Even if you wanted to wear it, I wouldn’t let you. Seriously, when did you buy this? Sophomore year? Of high school? I promise-there is no occasion unless there is an 80’s dress up day at your job that you will wear that sweater… I convinced her to donate a lot of her old clothes. It was hard. She had a large collection that made her feel comfortable. She might need that. The truth is that many of us hoard clothes “just in case”. We might lose that weight. I might need a white blouse. By the time we can finally let it go, it is out of style. Recently, my goal was to give nice, new gifts to some of our teenagers. I didn’t want people to go to our Walmart. I wanted more for them. I encouraged the counselors to have them make wish lists of their wildest dreams. One girl was thrilled with her American Eagle jeans. They were new. They were hers. They weren’t the flared leg, used jeans with the stain while everyone else had the new slimmer, straight legs. I know that we pack up our old clothes that may have been shoved in the back of our closet for 10 years and think, someone can use this. Someone will be thankful to have this.  And some are. But the reality is that most of us spend way too much money on clothes we never wear and then we hang onto them for way too long. I urge everyone to shop smarter and donate sooner.

Moving on…

Jake asked me to go with him tomorrow for orientation at the university I had attended. It’s not the school he will finish from, but they have an excellent pre-engineering program. This was his idea. He couldn’t have made a more sensible decision. He wants to take physics and calculus, and he knows he needs to ease back into it. He looks good, he feels good, and his attitude is excellent.  This amazes me because he recently had to endure a liver biopsy and was diagnosed with graft vs. host disease. He’s being treated with prednisone. He has been on that drug before and knows it’s nasty.  Ironically graft vs. host wasn’t a devastating diagnosis even though it cost Liza her life. It destroyed her mitral valve and lungs. For Jake, having a biological, perfect match donor, it meant his transplant was a success. It decreases his chance of having leukemia again by 50%. It meant Molly’s cells had completely taken over, giving him a new immune system.  He has been fighting sinusitis and congestion. He has watched his parents battle the same thing- it put me in bed for a week. Luckily he’s felt pretty good despite his symptoms. For the first time in his life, he’s experienced just having a cold. He’s been working part time and socializing with friends. I found out, they have been skateboarding in the parking lot. The other day a friend was lamenting her disappointment with a couple of coaches her kids had. I knew the feeling. Both of my kids have faced disappointments in life. Had Jake been healthy, I can only imagine what might have been as far as his high school sports career. Instead, he never finished a season. He tried. His coaches liked him, but knew he wasn’t their strongest player. He always appeared to be out of gas.  I told her that I understood, but then I added more. Her daughter was doing very well. She had not let her disappointments define her. She moved on. I understood, as a mom, how hard it was to let my own heartbreak for my child go. For me personally, when my son was dying, I realized none of that stuff in the past mattered. We all face disappointments. Humility isn’t a bad thing to experience. Her child had risen above it and moved on. My child will too. We need to also let it go…