Our Diagnosis Story

After a housefire over Father's Day weekend 2011, we were in temporary housing while looking for a new place to live. For more details about that part of the story you can read here. A gracious couple from our church needed a housesitter for their house that was going into foreclosure. They were attempting a short sale first and hoped to not have a vacant property that would be susceptible to looting. Though it's sad and wrong, it happens a lot. It was perfect timing for us and there would even be a pool for the kids to use to beat the summer temperatures that reach over 110 degrees where we live. I will forever thank God for that pool and for the fire that put us in that house.
Taking full opportunity to enjoy the pool while we had it, we invited some friends over. A full and fun day was had by all. After the guests had left, my son, Ryan was taking off the shirt he used for swimming in that day. (My kids generally wear shirts during swimming to cut down on how much sun screen they have to use). I asked Ryan to take off his wet shirt and leave it outside to dry. Normally I don't see the kid without his shirt on. He is Mr. Modest and usually changes in his room or the bathroom. So this night when he took his shirt off I noticed something odd. At first, I thought all of Ryan's swimming as of late was really building up his muscles. His neck looked really thick. After a second or two though, I realized it was only thick on one side. There was a large lump the size of a silver dollar just above his collarbone.
My husband wanted to take him to the ER right away. I hesitated thinking this wasn't an "emergency" situation. I called the pediatrician, but apparently I wasn't descriptive enough. He wasn't worried. He believed it was probably just an enlarged lymph node related to some infection Ryan's body was trying to fight off. He told me to keep an eye on it and to bring him in if it hadn't gone away in two weeks or so. The lump wasn't hurting Ryan and there were no other symptoms going on just then. Ryan had had some unexplained fevers in the past couple of weeks that went away as soon as they had come on. He had gotten pretty sick after the fire and needed to use an inhaler to control his cough. He had gotten better pretty quickly after using the inhaler, but the cough had started to come back in the mornings and the evenings a bit. This seemed to fit with what my pediatrician had told me so I acquiesced and didn't take him in immediately. I did take him in two days later though in an attempt to make my husband feel better.
The pediatrician's words were...
" This is not what I thought it was. I am really glad you brought him in."
He ordered blood work and chest x-rays to be done that day. That was a Thursday. I knew they wouldn't have any results until at least Monday. That was a long weekend. The Dr. had prescribed antibiotics so we were just thinking, hoping and praying the lump would start to go away. Monday came and the lump was the same. On Monday afternoon I spoke with the nurse practitioner from our pediatricians office.
The x-ray showed additional enlarged lymph nodes and the blood work showed an elevated white blood cell count in addition to markers indicating inflammation. A chest and neck CT were ordered for the next day.
A CT scanner looks a lot like a big doughnut, so we made Ryan a deal. If he got through the test OK we would go pick up a dozen doughnuts as soon as he was done. This made having to get an IV with contrast dye in it a little more bearable. I asked when to expect results. The technician told me the order had been STAT so the doctor should have a report in a couple of hours. We left the imaging clinic at 1pm.
As we pulled into our driveway at home with our dozen doughnuts at 2:30pm, the pediatrician's office called and asked us to come in at 4:30pm to recheck Ryan. We were very nervous and apprehensive.
My husband, Ryan, our 19 month old and I waited in the office impatiently. After what seemed forever, we were brought back in to the office. The nurse praticioner didn't examine Ryan. Instead she told us that the chest and neck CT results had showed the possibility of lymphoma. My husband was visibly shaken. I just tried to hold it together.
Our next step was to take him to Loma Linda University Children's Hospital. They wanted us to take him to the ER that night so he could be admitted for further tests. That was Tuesday night.
The next day consisted of a lot of waiting. Ryan couldn't eat or drink anything because they would be doing a biopsy under general anaesthesia. The staff was trying their hardest, but this was an add-on to the regular surgical schedule so Ryan didn't go into surgery until after 3pm. He was so hungry. It was a relief to see him wheeled into surgery knowing that afterwards he would finally be able to eat. The surgeon told us that he had pulled out a hard round ball of lymph node, roughly the size of a shooter marble. It was 8pm by the time he had recovered enough from surgery to eat, but he certainly made up for it. That was a good thing, since Thursday meant another test he wouldn't be able to eat for- the PET scan.
A PET scan is an amazing piece of technology. If you are interested in how it works you can check out this link. Amazing as it may be however, it is still amazingly slow. Poor Ryan had to lay perfectly still for two and a half hours. An amazing feat for a nine year old. To be honest, he did get uncomfortable. He did cry a bit as his legs cramped up. Mommy did want to ring the neck of the technician who let him cry for ten minutes until I said something. I only let it go that long for fear I would invalidate the test and Ryan would have to start over after he was already an hour in to the test. I wanted to ring his neck again as he took personal calls during the test but did not speak at all to Ryan or let him know what was happening or how much longer it would be. I think most of us, including kids, can get through hard stuff if we know what to expect. Apparently this technician didn't feel the same way. In his defense, the way the test works, the patient is supposed to be really relaxed and not stimulated. Somehow though I think not explaining what's going on to a nine year old somehow works against the whole keeping the patient relaxed thing. In the end though, we got the images we needed.
The doctor came by Ryan's room and let me know he was ready to speak to my husband and I. Only problem was my husband was still an hour away. So I had to wait for him to get here before we could get any news. What he did tell me was that we knew what were dealing with and how we were going to proceed. My heart ached. Up until now, we had prayed we weren't "dealing" with anything. Not anything serious anyway. My hope was still high though. Maybe just maybe it still wasn't cancer.
In my head though, I already knew. A simple google search of lymphoma in kids took me to a perfectly matching symptom list.
That was one of the hardest hours of my life thus far. I was with Ryan, so losing it wasn't an option. He was happy at this point. He had eaten, was watching TV, and drawing. I tried to do some drawing. A little tangling to help relax. Shaking hands drawing shaky lines make for one interesting tangle.
My husband finally arrived. He was nervous. We ended up having to wait another thirty minutes or so for the doctor to finish up his phone call. He took us to a private conference room and broke the news.
It was Hodgkins Lymphoma. Devastation was immediate.
As the doctor explained more though, we were once again hopeful. This disease is one of the most curable and least complicated to treat. The remission and survival rate is well over 90 percent and on top of that we had caught it at no later than a stage 2, possibly even stage 1.
Amongst this hope though, we still let ourselves grieve a little. We grieved the normal carefree childhood that Ryan would be sacrificing. Even after the treatments are done this will always be with him and us. He will always be looking over his shoulder to make sure it hasn't come back. There will be scans and bloodwork for a long time to come and an increased risk or other conditions. Late term effects of the chemo may not show up until he reaches adulthood.
We are warned that this is a day by day battle. Anything more will be overwhelming. We are beginning to accept this. We are gearing up for a new normal.

1 comment:

becky johns said...

Informative and helpful information. Happy for you that there is a high cure rate. God is in charge of when we die, so let go of worrying about that. In time your faith will overcome your fear and you will feel happy again. My brother survived this disease so be optimistic.

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