Hey?! How are you?

We’ve been in the bone marrow transplant unit less than a week, and it is funny (scary) how many people have recognized me. Jake is restricted to his floor, but I venture out a little bit. We’ve spent the better part of the last two years in a big hospital, in a big city 2 hours from home. This time was planned, and we sublet an apartment close to the hospital.  Turns out the gal I met from a Craigslist post knows one of my friends. A neighbor stopped by the hospital to visit me, and in the cafeteria,  I ran into a student doctor who initially was on an neurology rotation when Jake was in the ICU, then a pulmonary rotation when he was back a year later on the cancer floor.  She recognized me, and I gave her an update. The guy at the front desk who gives us a parking pass just did a double take. The food service guy really likes Jake and remembered mom will take a chocolate chip cookie anytime. I’ve run into nurses, transport members, etc., and some of his former doctors have Jake “flagged” and come by for social visits. When he was first transferred here in November 2014, I was scared to death. I wouldn’t leave his ICU room for weeks. It was lonely and scary. The ICU wasn’t accommodating, and the nurses probably didn’t want us in his room. One was particularly snotty, until I held my kid still for a lumbar puncture, then she sweetened up. I finally accumulated enough disposable pillows that I made a little bed on the floor. We went to the ER so many times those first few months, the security officer waved us through after running to grab a wheelchair. I would tell the person at the desk, “We need a private room- it’s too complicated, but you have to just trust me…” She would look at me like I was crazy until the security guard would yell in, “she’s right- just trust her!” Then I would tell the doc, “We just need pain control until Dr. S. gets in and can admit him,” That routine became a little too repetitive. I won’t use full names,  but Dr. S. happened to be the first doctor we saw in the ICU. He quickly became the one we trusted and waited patiently for him to make his rounds.  There were so many different teams, but he has remained our one constant. He comes by now socially, but a year and a half ago, he saved Jake’s life.

The 1st grade

In the fall of Jake’s first grade year, he became ill. It started with a throat full of canker sores. They spread to his mouth and were followed by a fever. Jake looked and felt pretty sick. We took him to his PCP, and he thought it was viral. He soon was covered in a rash that looked like lace – it wasn’t raised or itchy. I searched his symptoms, but nothing seemed to fit. The common viruses of childhood should have passed. Jake was sick for 6 weeks. We went back to the PCP, but he wasn’t too concerned. He did get better without hospitalization, but it kept nagging at me that something was wrong. Soon his toes were covered with warts…

Oh, thank goodness!

Let’s go back to the summer of 2014. Jake was at an engineering camp at a prestigious engineering university near our hometown.  He called and felt like he was coming down with something,  but he could stick it out. He didn’t seem too sick, but he had a nagging cough that didn’t go away. I took him to our primary care physician.  “Looked like a touch of pneumonia,”- what else was new? I said,  “Do you think it’s time he saw a pulmonologist? “, and he was referred to one I had heard good things about. A month later, Jake was feeling better but still coughing. After an examination,  the doctor concluded it was acid reflux. “Oh, thank goodness! ” We left with 4 new prescriptions and an appointment for October.  Jake had started his senior year in high school. He was at the top of his class and excited for his future. I wish then I would have known the exact words of the radiologist before the referral,  “There is something wrong with that kid’s lungs,”- I wouldn’t have accepted acid reflux as a diagnosis. ..

Shall I go back to the first grade?

When a doctor asks about my son’s medical history, I start with,  “the short version, or shall I go back to the 1st grade? ”  It’s become a family joke. I can try to give the short version or keep my mouth shut and let Jake speak for himself, but I will inevitably fail. Last year Jake was so sick- sick of the hospital, sick of the endless rounds of doctors and students, and sick of repeating the same things over and over. An infectious disease doctor was trying to pry information out of him, and when I started to answer for him, she shushed me. Yes, she shushed me like I was a child. When she finally allowed me to speak, I said, “I am trying to give you and every doctor that comes into this room as much information as possible, as many details as I can remember in hopes that something will click with someone and someone will figure this out and save my child’s life.  She could not find the source of Jake’s fever; it was later that a last minute Hail Mary pet scan revealed a large mass of bacteria hidden in unidentified “gunk” in his lung…

How I found myself here…

I have no idea how to make this blog attractive or inviting, but I do have a purpose. My head is bursting with things I want to say. I may bounce around from present and the past. My family likes to tease at how much I like to talk. I once talked to a wrong number for 45 minutes, but I was able to help that caller. I am helpful and giving. I have a voice that I don’t mind sharing. If anyone can gain anything from my posts, it is worth it. I will start with the present at this time. I’m sitting in a hospital room with my 19 year old son. He had his last bag of chemo earlier and Wednesday will receive his sister’s stem cells…hopefully it will be the beginning of a new life for him, and there is much to tell-past, present and future…