How it all started

Quite a few people have asked me how we ended up at Children’s with Asher. What made us think he was sick? The quick answer is “nothing really”. Asher had a normal cold for about 1-2 weeks. There was the snotty nose and a mild cough and that was about it. On Wednesday October 30th while driving to a photo session after work I thought about Asher trick or treating in the cool rainy air. Then I thought about his cough….and then I thought about his breathing. On Tuesday I noticed him breathing sort of heavily while sitting at the dinner table. Nothing labored or noisy, just kind of taking some silent deep breaths while quietly sitting. When he went to bed Tuesday night I checked on him and watched him breathe and he seemed fine, so I dismissed the idea that something was wrong. For whatever the reason, while driving to my session I called Asher’s babysitter, “Miss Trish”, and asked her if she had noticed any changes in his breathing. Trish has first-hand experience with breathing issues and asthma, so I knew she would notice if something was off. Sure enough she had noticed the same thing in the last few days, but it hadn’t been consistent. I decided it would be a good idea to make sure his cold wasn’t turning into bronchitis or pneumonia before sending him out to trick or treat the next evening. After all, Asher’s last cold (over a year ago) required the use of an inhaler to finally get it resolved.

I called the pediatrician’s office to make an appointment and was sure they would let me come in Thursday morning or afternoon. Instead, the nurse asked me a few detailed questions, talked to the doctor, and then asked me to come in that evening. They were completely booked, but Dr. Furby added one last appointment for the evening just to make sure he was okay. So, I had to call and cancel my session, turn the car around and head home to get the little guy. At 6:10 we arrived at Eastern Hills Pediatrics where Dr. Furby examined him. He listened to his chest for a LONG time and asked him to take several deep breaths. I was beginning to feel a little silly and was preparing to hear “he sounds fine, go home”, when he said “he has no breath sounds on the left side, how about you go across the street and get an xray.” I didn’t worry at this point and thought for sure he had pneumonia and could be fixed up in no time. Dr. Furby told me I could get the x-ray and go home, he would call in a few hours with the results.

Asher and I arrived at the Anderson children’s outpatient office and they quickly got us in for a chest x-ray. Then the technician said something that surprised me “How about you wait here until the doctor calls back with the results.” I wasn’t really thrilled about the idea of sitting around for 45 minutes for the doctor to call when I lived only 5 minutes away. But, I sat down and we waited. The longer we waited the more my mind started to wander. I went from thinking “she must see the pneumonia and know they will want him treated ASAP” to “maybe she is new and doesn’t realize it is okay for me to go home to wait for results” and finally I thought “maybe she saw something really bad and doesn’t want me to leave”. I tried to push that last thought out of my mind. After all, he was acting totally fine at that point. After about 45 minutes I was called to the registration desk to speak with Dr. Furby on the phone. That’s when I knew something was really wrong. He told me that Asher’s entire left lung was occluded and that he either had very severe pneumonia or a mass in his chest. I remember saying “So, do you think it’s probably pneumonia?” to which his responded softly “Well, he doesn’t have any other classic signs of pneumonia.” My heart sank as he instructed us to go to Children’s Hospital where they would be waiting for us in the Emergency Department. I called Dave, who was at home with my Mom and Charlotte carving pumpkins to let him know what was going on. I think I held it together on the phone but as I walked Asher to the car I lost it. When I got home my mom and Dave had packed a bag for us to take to the hospital because we were told we would be spending the night. I had a bad feeling, but Dave was staying positive and holding me together. After all, they hadn’t actually seen a mass in his chest, just lots of fluid. We arrived at the ED and they moved us into a room fairly quickly and began running some blood tests. I remember hoping that his white blood cell count was high because that would mean he had an infection and the fluid was pneumonia. Of course it came back normal and some other tests that showed rapid cell turnover came back elevated. We were getting ready to be admitted to a “regular” room when they informed us we would be going to the ICU. I think we were both a little shocked. Again, he was acting just fine. Then the doctor told us that his chest x-ray showed that the amount of fluid in his left lung was so great that is was causing his heart and airway to be pushed “slightly” to the right side of his chest (where it didn’t belong). We were assured they just wanted to keep an eye on his breathing in case things worsened overnight. The next day Dave and I saw the chest x-ray, and let me tell you, there was nothing “slight” about it. It looked like his entire heart was on the right side of his body and his airway was pushed so far to the right it made “C” shape. It is truly unbelievable that he wasn’t showing any trouble holding his vital signs steady. He was using only one lung and there was so much pressure on the left side of his chest. I still have a hard time believing what I saw.

The CT scan Thursday morning showed a mass on the left side of his chest that to me looked perfectly round toward the top and then sort of wrapped around his ribs down the side. The doctors seemed certain that he had a solid tumor of either the bone or soft tissue. I asked if he had Leukemia (mostly because that’s the cancer I had always heard of kids having) and they said “no, probably not”. Then, we had no choice but to sit and wait until the biopsy scheduled for Friday morning. We were relieved to hear that during the biopsy they were able to drain almost all of the fluid (750 CCs!!) from his chest and that his left lung opened up and started working almost immediately. Later that day we heard that the preliminary results showed that that it was in fact either Leukemia or Lymphoma. We didn’t know it at the time, but this really was good news. Like I said one of my earlier posts, there is about a 94% cure rate. The mass in Asher’s chest did in fact turn out to be a blob of Acute Lymphoblastic Lymphoma cells that basically tricked the doctors into thinking it was a solid tumor (what they call an “atypical presentation”). We were told that the first month of chemo therapy would melt the mass away and no surgery would be required.

So, there it is. That’s how we ended up where we are today. We are so thankful that our pediatrician took our concern seriously and that he listened so intently to Asher’s little chest and was so kind in delivering such bad news. He really deserves a big hug, which I intend on giving him as soon as I get the chance! Of course we are thankful to the quick work of the CCHMC oncology team as well; they have all been so amazing in helping us understand what is happening. We continue to pray for Asher’s cure and we thank God that he has such a treatable form of cancer. Things could have been so much worse. We know God has been watching over us from the beginning, giving Asher the strength to get through this.

Now for some pictures from this summer. Asher having fun!