Cowboy

Last night Jake wanted to go out to eat. I was thrilled. He is a completely different kid than a week and a half ago. Thank goodness his hallucinations and confusion was a drug toxicity that was reversible. We went to a Japanese Hibachi grill. I was surprised he didn’t insist on Buffalo Wild Wings, but his new GI tract lining can’t handle it yet. He protested when I suggested we let him off at the front door. Mom, I want to walk. Quit treating me like a baby. I try not to be obvious as I watch Jake and Molly casually talk over their meal. I’m in awe of both of them, even before Jake got sick. I’m thrilled as he takes bites of steak, chicken and shrimp. A mother always feels better when her baby eats. We go to Best Buy; Molly is anxious to get her laptop for college. When I went to college, I bought a notebook, pens and pencils. The kind you had to sharpen. “Nobody cares, Mom.” Molly decides she needs Jake to help her with her decision. Mom, where’s the bathroom? I need to throw up. It wasn’t his whole meal by any means, and I was thankful. He sat down on the floor of the store until it passed. It did, and he resumed looking on his phone for coupons and price matches. This morning Jake was up and wanted to take Ellie outside to play. He grabbed his skateboard. Are you sure, Jake? “Mother, lay off. I just want to see if I’m getting my balance back.” Luckily he tires out before he has a chance to test it out. We make a trip to Walmart, and while I’m making lunch, Jake says to me. Guess what, Mom? Last night after you went to bed, I ate an apple. With a knife. Like a cowboy. I didn’t hurt myself.  “That’s great, Jake, but did you remember to wash it first?”

Last night Jake wanted to go out to eat. I was thrilled. He is a completely different kid than a week and a half ago. Thank goodness his hallucinations and confusion was a drug toxicity that was reversible. We went to a Japanese Hibachi grill. I was surprised he didn’t insist on Buffalo Wild Wings, but his new GI tract lining can’t handle it yet. He protested when I suggested we let him off at the front door. Mom, I want to walk. Quit treating me like a baby. I try not to be obvious as I watch Jake and Molly casually talk over their meal. I’m in awe of both of them, even before Jake got sick. I’m thrilled as he takes bites of steak, chicken and shrimp. A mother always feels better when her baby eats. We go to Best Buy; Molly is anxious to get her laptop for college. When I went to college, I bought a notebook, pens and pencils. The kind you had to sharpen. “Nobody cares, Mom.” Molly decides she needs Jake to help her with her decision. Mom, where’s the bathroom? I need to throw up. It wasn’t his whole meal by any means, and I was thankful. He sat down on the floor of the store until it passed. It did, and he resumed looking on his phone for coupons and price matches. This morning Jake was up and wanted to take Ellie outside to play. He grabbed his skateboard. Are you sure, Jake? “Mother, lay off. I just want to see if I’m getting my balance back.” Luckily he tires out before he has a chance to test it out. We make a trip to Walmart, and while I’m making lunch, Jake says to me. Guess what, Mom? Last night after you went to bed, I ate an apple. With a knife. Like a cowboy. I didn’t hurt myself.  “That’s great, Jake, but did you remember to wash it first?”

Andrew Smith

Andrew Smith was a beloved basketball player at a university in the city where Jake had his bone marrow transplant. I was aware of him, for sure, but I could not bring myself to read his story until last night. In January 2016, while Jake was in remission awaiting his BMT, Andrew died. While playing pro basketball in Lithuania, Andrew developed a lump near his collarbone. He tried to ignore it, but soon he became short of breath. Mom, I’m really short of breath. I haven’t been able to walk to the cafeteria to eat for two days… The Smith’s and we both thought pneumonia – certainly not cancer. The doctors in Lithuania cut open the lump, but did not have the capability to figure out what was wrong. They quickly returned to the states, eventually to the same floor of the same hospital where Jake would be a few months later. Andrew ‘ s wife called the lump a blessing in disguise in her blog. They were led to the real diagnosis because of it. The body always, eventually tells you there is something wrong. Sometimes the signs and symptoms aren’t obviously the answer, but a clue, perhaps, to the mystery that lies within. Andrew ‘ s led to an x ray that revealed a large mass in his chest, non Hodgkins lymphoma.  Normally this would be a relief- a 90% cure rate, but like Jake, there were other factors that complicated his case. His was a rare type that usually occurred in children with a 50% cure rate. They went through rounds of chemotherapy and months in the hospital. Andrew eventually went back to work. Three days later, he collapsed in cardiac arrest. He had no pulse for 22 minutes. He miraculously recovered, fully. The Smith’s felt strongly and prayerfully that there was a reason Andrew had survived everything he had survived. It wasn’t his time. God had big plans for him. We have heard the same thing from so many people. This wasn’t happening for nothing…  Soon Andrew came to realize he would need a bone marrow transplant. He became involved in Be the Match. This was the same group of people who generously traveled to Jake’s college and our hometown for our registry drive. While Andrew was dying, they came to help us. They had to be heartbroken for him, but needed to push forward for the people who would need them too. There is about a 1 in 400 chance of being a match. Andrew found his match pretty quickly. About 6 months before Jake’s transplant, Andrew was there in the same unit with the same staff that took such good care of us. There was a picture of him on the same exercise bike that Jake had ridden. Andrew was released from the hospital, but within 3 days, they knew something was wrong. He was readmitted. The blood tests revealed his body was producing cells, but immature cells, called blasts also known as leukemia.  This is what Jake’s body had done back in December. The hospital medical technologists were likely checking Andrew’s and Jake’s blood at around the same time. I may have passed Andrew’s wife in the hospital, oblivious that they were there too. But for Andrew, this was the end. The transplant was unsuccessful. He died a few weeks later. In May, when Jake was released from the hospital, Sam Smith was facing their anniversary alone. She lives in the house they bought which isn’t far from our city apartment.  No one knows why some transplants fail. Even though over 200 diseases can be cured by a BMT, they are only performed when there is no other choice. That’s why we go into it with hope. I ignored the risks and possible complications. I didn’t allow myself to read about Andrew. Thankfully only people who knew about success stories shared with me. There are many happy, healthy people who live normal lives after a BMT. Right now, I want to honor those who didn’t. You can still register at www.bethematch.org in honor of Andrew and Jake.

Visit

Jake had to have blood work done today. It is a weekly check, and hopefully soon the length between checks will become longer. What a difference a week makes! Last Monday, he was in the hospital, and we were anxiously waiting on news. Today, he felt well enough to eat a burrito (or half of it) and visit his college. I realized awhile ago that I had forgotten to turn in his dorm key. What a sad day it was last December when we realized he wouldn’t return to college for awhile. His roommate helped me pack up his room and load the car. Today I received a refund check from his tuition. We stopped at the front desk and I know I didn’t say his name, but the girl knew who he was. I asked if Tom was there. I was on a first name basis with the Dean of Students.  He came out and greeted us and asked about my dad and Molly. He’d treated us to lunch the day of the bone marrow registry. Dave had been with Jake at the hospital. What can I do for you? It was almost closing time, and I really just wanted to return the key. Tom wanted to make sure Jake had housing and a class schedule in hopes he would be back this fall. It had already been taken care of. Kyle, the Director of Housing, also knew Jake by name and wanted to take a few minutes to chat. We walked back to the car. Jake promptly threw up- maybe it was the walking or the heat. He threw up yesterday and the day before. He has a long way to go, but he is determined to get back to school asap. They are determined to do anything they can to get him back and finish his degree.  We chose this small, private school for a reason. We were concerned his health issues would create bumps in the road, and we wanted his professors and the college to not only know Jake but to care.  They do. We couldn’t ask for anything more. On paper, this college looks very expensive.  So does the university Molly has chosen. The reality and best kept secret is that with the merit scholarships my kids received just by applying, they are no more expensive than the state schools.  In fact Molly’s will be about $12,000 less per year than the state university I thought she’d be attending.  Tom wants Jake to meet with the doctor who is affiliated with the student health services on campus. Maybe someday Jake will be able to see a regular doctor again and not a specialist. This doctor had gone to Jake’s college as an undergraduate and then to Jake’s hospital for medical school. Hey Jake, maybe you’ll end up becoming a doctor too! “Ummm, no. A hospital is the last place on earth I would want to work!”  Touche’…

Attention

I keep thinking about Chance ‘ s family. His mother posted earlier that someone suggested she had made her Facebook page in her son’s name because she was seeking attention. I don’t know this woman, but I can assure anyone that would question her motives that it was not to garner attention. She stated very plainly that she wanted to keep people updated. There were so many people concerned that she could not possibly text every person. I started posting updates on Jake because there were false rumors circulating, but later it was also to keep people updated. Despite what this ugly, horrible person thought, it certainly was not for attention. Someone had remarked that our son got a lot of attention because of who we were. Who are we? My husband is a long time educator. I have lived here my whole life. True, the people who stepped up to help have known me personally for years. I won’t apologize because people cared. It had nothing to do with which side of town we lived on. There are just a lot of loving, caring and generous people who want to help. I will never forget when the opposing team’s coach was the first to have his cheek swabbed and bought a #matchmeister t-shirt for his entire team. I think the same was true of Chance and his family. Their community rallied around him. I also want to recognize a group of literal strangers who have become so dear and so supportive of our family. My son had barely started college. I was a member of the parents’ Facebook page. That group of parents has given us- complete strangers- so much love, prayers and support. This is an example of how we must not forget, especially on the heels of Orlando, the goodness of people. It still exists. People in our hometown who we knew, people we didn’t know and people from all over the country offered love and support in ways I couldn’t even imagine. I didn’t do it for attention, and neither did Chance ‘ s mom. We shared because we knew or soon realized that people cared. Chance ‘ s death will leave a hole in many hearts. When you see his mom, give her love; give her hugs; let her talk about her son. Treat her normally. Don’t avoid her. Help her heal. She will never forget your kindness.  The attention she receives will be deserved, but she never asked for it…#chancestrong

Chance

I literally feel like someone has punched me in the stomach. Not long ago, a friend suggested I check out a FB page. It was a boy a little younger than Jake who was getting ready to have a stem cell transplant. He was diagnosed with the same type of leukemia as Jake. I’m not sure of his details. I don’t know if he had been in remission, and the leukemia returned. That is when they are more likely to go forward with the transplant. Jake had to have a stem cell transplant. Curing the leukemia was not going to cure the immune deficiency.  Before Jake’s transplant, his doctor shared that 200 diseases were now curable by a stem cell transplant, but the benefits had to outweigh the risks. For a moment, I considered this, but then I quickly returned all my focus on the benefits. Jake would have a chance at a new, healthy life. I planned to reach out to this other boy soon. His name was Chance. I knew the first few weeks would be tough, and he would most likely feel horrible from the chemotherapy. Today was too late, he died this morning. I am heartbroken for his loved ones. I looked at his FB page. Like me, his mother posted updates. Some of them brought back memories. They were waiting on Chance ‘ s neutrophils to show up. He was sustained by blood and platelet transfusions.  His own platelet count never recovered. None of his blood, or the new blood cells ever recovered. The stem cells did not appear to be engrafting. It could have been complications from the chemotherapy. An infection believed to be caused by his central line also complicated his recovery. Within a day, his ammonia levels reached critical levels. He was moved to the ICU unit for what they hoped was a short stay. It wasnt. He took his last breath not long after the doctors said there was nothing more they could do. I’m utterly heartbroken for his mom and his family and friends. Like Jake, his town and school rallied around him. It reminds me of how lucky we’ve been. What a miracle it was to have a biological donor.  The nurses were always commenting and so happy to report Jake’s blood counts every morning. They celebrated when his first neutrophils showed up. I didn’t really appreciate what it all meant. I really had no idea. I was happy because they were happy. But they knew the reality. They knew how important it was to see those signs of engraftment. Some of the side effects have been horrible, but they could have been worse. Thank God we didn’t have complications. Thank God that last week’s hospital stay was a reaction to a medication.  So while I am lucky enough to be thanking God, I’m also going to be asking God to please bring peace, love and joy to this young man’s loved ones and the friends and community that must be devastated by the loss of this dear young man. #chancestrong

Toxic

It was a long weekend. I knew it would be, and there was a part of me that was very thankful that Dave came over Sunday afternoon. It gave me a chance to have Father’s Day dinner with my dad, Molly and my sister’s family. I missed the doctors rounding this morning, but I was able to clean at home. I waited anxiously for Dave to call me. They had done an MRI on his brain on Sunday.  The initial reports indicated the ventricles had changed a little. Of course I was worried that it was more than dehydration, but I had learned long ago not to get too excited over initial results especially from the hospitalist.  No offense to them, but I knew better. At any rate, we were anxious to see Dr. S. this morning and hear his thoughts. He felt pretty strongly that Jake had drug toxicity. The kid takes a dozen different drugs everyday, and a few new ones and dose increases had been added since the transplant.  I try to avoid reading the side effects. I cannot wait for him to be drug free. They are now changing a few things and decreasing one of the possible culprits. Jake is much more aware now. He’s not loopy or hallucinating. He’s not talking in his sleep or jerking. His kidneys were being affected, and thankfully there are blood tests to keep an eye on his organs. The chemotherapy was brutal enough, and now he will have a good year of additional medications that will need to be monitored, closely. I was feeling pretty down as I drove home Sunday. I hate waiting and not knowing. I then I saw her. I drove past the house of a long time friend who almost lost her life to cancer a few years ago. She and her mom have been so supportive and such an inspiration to us. Cami had her cancer ridden femur replaced by a metal rod, affectionately called “rod knee “. She had the lifetime maximum amount of chemotherapy. She had radiation. She almost died one night because of Ambien, a widely used sleeping pill. The first time I saw her after her ordeal, I was shocked by her appearance, much like I am by Jake’s. And yet Sunday evening, she was outside in her cut-off blue jean shorts bent over a flower bed around her mailbox. She was going at it pretty hard digging and pulling weeds. She’s always out doing something around her country home along with her job as a surgerical nurse and keeping up with her 3 busy boys. She made me feel better. She gave me hope. I would have pulled over just to get a hug, but my family was waiting. We were going to celebrate Father’s Day…

In good hands…

I let my guard down. I went to the post office. I started unpacking our overnight suitcases from our city apartment. I found my flip flops. I made jello and pudding and supplemented it for Jake. I went to lunch with friends. I had unexpected visitors for dinner. 4 old high school friends, reunited and talked for 6 hours straight. I took them on a tour of the new high school. We took pictures doing cartwheels on the stage. I went to bed feeling good. My baby was coming back from North Carolina tomorrow.  I slept until 9 am…then it became real. Jake was saying things that were loopy. After a few emails and phone calls, I knew we needed to head to the hospital.  It’s been 8 hours. We’re waiting on the doctor. Thank goodness there was a bed. Thank goodness he’s not hungry, thirsty or in pain. They don’t want him to have anything until they evaluate him. Thankfully, he is resting peacefully.  There were 2 admissions ahead of him. The nurse just came in and woke him up. Well now he’s hungry…great.  Pudding and chicken noodle soup probably won’t appease him. He’s willing to try to eat it.  We’ve really struggled to get him to eat. Nurse J. is on top of it. Jake gets a kick out of her. She has an accent and gets right in his face. She has brought in one of everything, just to taste- you taste- you may like it now…I need to take her home with us. He thinks the chicken noodle soup smells good. She’s putting cheese on a cracker. You try this- you like? Jake would have yelled at me long before this, but Nurse J has the touch. Jake is afraid they’ll release Physical therapist K on him next. He’ll probably have me lifting weights tomorrow. I was so happy they told me I was coming back to floor 5. I was scared of where they might put me.  I hope I’m home by Monday…you’re in good hands, Jake. This is a setback, but hopefully just a little one. You keep eating, Baby…

A place we don’t want to be…

We are back at the ER. I’ve never been here when it was this crowded or busy. Of course things like this always happen on a weekend. Jake woke up and was pretty loopy. He was seeing things that weren’t there. He was drifting in and out of sleep and confusing dreams with reality. I’m hoping it is just a little dehydration. We have an appointment on Monday, but we couldn’t risk waiting. I knew where I was going, but there weren’t any parking places. I just left my car out front. I asked the security guard what I should do. “You can park in the parking garage across the street.” My child can not walk. I need a wheelchair. Where can I get one? “If we have any left, they’re inside. But wait, you have to go through the metal detector and I have to check your bag.” There was one wheel chair left. I moved the car forward as much as I could, then proceeded to get Jake out of the car, hoping no one would take my wheelchair. A man stumbled by looking for an unlocked entrance to the hospital  looking for his “dope”. He came within inches of us, and I was hoping he wouldn’t want to look in my purse for his “dope”. He managed to beat us through the metal detector and to the front desk. We had to wait while he told the receptionist that he needed his “f-ing dope.” She calmly asked him not to swear and to pull his pants up. He finally became belligerent enough that a police officer took him outside. The waiting room was packed. Should I take him to another hospital? “Is he too old to go to the children’s hospital? “No, his doctor also sees patients there. “You might as well stay here, the nurse will get you in.” The nurse was eating trail mix and was perfectly aware that I was standing there, but she didn’t make eye contact until she was good and ready.  My son is in the system. He is a bone marrow transplant patient, and because of his history, they always put him in a private room. She looked at me like I was nuts. “The triage nurse will be with you shortly. ” The other gal gave me a look of empathy. For the first time since I was told he had leukemia,  I was on the verge of tears. Pretty quickly, the triage nurse took him to a semi private area surrounded by curtains. The nurse started asking questions and the doctor came in. She told the doctor to keep asking me questions, but she was taking Jake to a private room stat. I immediately calmed down. The two nurses taking care of Jake are good. They have patients in beds in the hallways because it’s so busy, but Jake’s tests were immediately done. I can hear a doctor trying to get the patient to admit what she had taken. Another guy is thrilled to get a boxed lunch, then can he go home? “We are waiting on your heart test results, Sir. I feel better now. Can I just go home? Another patient is fine as long as they get her results back by the time her ride gets here. “Ok ma’am, we are trying to hurry. The best I can write for is Tylenol. No, none of the doctors are going to give you a prescription for that. We have to see what the test results show. Can I get you to pee in a cup?…”  We are waiting on results with all the other people around us who seemingly have taken an undetermined drug, want drugs or just would like a meal.  Our doctor is sure he’ll be admitted. My experience tells me that could take hours. Jake thinks he’s getting ready to take his SAT’s. He’s having very vivid dreams. He reaches out and says things that don’t make sense. Then he sleeps peacefully for awhile… he doesn’t belong here. But it’s Saturday…

Scrapbook

Molly just texted me to see if I would take a picture of an old picture in a photo album and text it to her. I will try… “Thanks, girl”… that was her response to me, “Thanks, girl!” Well thank you Molly for having me dig out that old scrapbook. The cover is barely hanging on. One of the dogs nearly destroyed it after it was left out one day. The pictures were fine. I remember struggling with my feelings about pictures and my scapbooks. It got to the point where I avoided taking pictures because I knew the work involved in the scrapbook process. It was a brillant concept, and I bought all the right equipment, but I grew tired of trying to out do my prior creative memories. They have brought a lot of joy and memories for the kids . Now we have collections on our phones. I still envy people with fancy cameras who capture every moment. I remember the piles of photos that I finally threw away because they were duplicates and out of focus. I remember reading somewhere and passing the advice to my sister, you don’t need 10 pictures of the same shot. One will suffice. I wish I would have been more diligent about pictures as the kids got older. I am forever thankful that we had Jake’s Senior pictures taken 2 weeks before he became critically ill. He hasn’t looked the same in over 2 years now. I guess I was staring at him earlier when he was eating. Mom, quit analyzing my face. I think I was concentrating more on him taking another bite. I think he might have thrush. We go Monday back to the doctor. It’s been a long 2 weeks since he’s been home. Especially this week. Molly was able to go with a friend and her family to the ocean. We used to go every spring break. Jake wants to go to the opposite coast or Hawaii.  We will Jake. As soon as we can, we will go wherever you want. I was reading what I had written by his 5th birthday picture. You had pneumonia from Halloween until Thanksgiving…. We knew something wasn’t right even back then. It wasn’t normal. His immune deficiency wasn’t even identified back then. The doctor said they would have chalked it up to “bad luck” hoping he would outgrow it. I sometimes wish that he could have had the stem cell transplant earlier in life. But then it would have been the bone marrow transplant that we’ve all heard about. The painful, brutal, literal transplant that now has become so much easier. He’s getting ready to go to the movie with some friends. It makes me nervous and happy at the same time. Maybe I’ll make them pose for a picture before they leave…