Here’s the long version of our story, At this point, it is not finished, as I am a pretty slow typer:)
Sam had been complaining of pain in his right leg for a while, we can’t quite remember for how long, maybe a month or two. The pain would come and go often in different places, and we just chalked it up to growing pains. Just a normal growing boy.
About 5 weeks before we were admitted to the hospital, Sam wasn’t sleeping well, he kept waking up and saying that his leg hurt. Sometimes we would give him panadol for the pain and that seemed to work and let him get back to sleep, but we kind of thought it was partly in his mind and that it wasn’t that bad, so often we tried to get him to fall asleep without any medicine. Some nights we were all awake many hours of the night, trying to distract him and help him fall asleep.
After probably a week of every night being an ordeal, we took Sam into a walk in medical clinic, just to see if there was anything they could tell us to help figure out what was bothering our little boy. The doctor there didn’t really have any ideas, she said maybe Sam should have an ultrasound for his leg though, in case there was something bothering his tendon or something. And that day, Sam’s leg stopped hurting. Awesome! we figured it was just one of those mysterious body things that we have all experienced one time or another.
But… the next day, his ear and jaw started hurting. And it kept him up at night. And we gave him more panadol. And we all had terrible sleeps. This time we attributed his pain to the fact that his 6 year old molars were coming in. That lasted maybe another 6 days. Again I took him in to the doctors, and again there wasn’t anything specific that she could find. As soon as his jaw stopped hurting, his leg started hurting again.
On Friday the 6th of September, we all went out to a beautiful little gathering put on by some people from our church, there was face painting and wood fired pizza, and Sam was having a great time on the tire swing with his mates. Everything seemed totally normal.
That night, Sam woke up continually through the night, I was getting really frustrated with him, thinking he just needed to toughen up or something. Rin ended up being up most of the night with him, and even giving him panadol only helped him for about 45 minutes and then he would wake again in pain. In the morning Rin said we gotta get this boy to a doctor again, so we looked for a doctor that was open for walk ins on Saturday morning. So, Saturday morning, we all went in to Murwillumbah, I dropped Lorinda and Sam at the doctors and I went to Coles to get the groceries for the week.
When Lorinda and Sam walked into the clinic, the receptionist asked her if she had been to the doctor there before, and Rin said no she hadn’t. The receptionist said that she wasn’t supposed to accept new patients, but she was kind and let Lorinda and Sam see the doctor! When I got back from the shopping, the two of them were in with the doctor, but when they came out I knew something wasn’t good, Rin had tears in her eyes and said that the doctor had told her that we should take Sam up to Tweed Heads hospital for some tests right away. What he said was that sometimes you can get an infection in your bones and he wanted to check that out. We could tell that he was quite concerned about Sam, and Sam was looking quite unwell, especially with having slept so little the night before. He also mentioned that it might be wise to bring a suitcase for overnight, because it was possible that we might be there for a couple of days. So, we drove home, put the groceries in the fridge, and dropped the others on the floor, Rin packed a suitcase, and then we took off for the Tweed Heads hospital.
Funny how in situations like this, your mind goes to many places it shouldn’t. Somehow something of the doctors demeanor had alerted us to the fact that we could be dealing with something quite serious, though he had been significantly vague enough that it could be almost anything. I was imagining life with a child with one leg because of some sort of bone infection. Lorinda was thinking about a friend of ours who had visited the doctor, been told to go to the hospital and then never came home. He died of leukaemia. Sam was in the back, finally sleeping after such a long night. I remember Lorinda mentioning our friend and I told her not to go there, that wasn’t going to be our story.
We got to Tweed Heads hospital at around 11:00am, and parked at the emergency. As we were walking away, I noticed not right in front of our car but the next spot over, a sign that said “renal and oncology parking” As we got out of the car an older man confronted me and said “can you read those signs”, kind of angrily, and I not even knowing what oncology meant said, “I think that’s us.” Little did I know how right I was.
They saw us fairly quickly at the emergency, the doctor had rung ahead and told them that we were coming, so by 1:30 they had done an xray of his leg which looked fine, they also had taken blood samples and sent them off for processing. Getting the blood taken was a rough for Sam, particularly as the doctor that was doing it was obviously not very experienced and wasn’t able to get the needle in the right place. After what seemed like forever, a more experienced doctor took over and got it right away. Sam was very good and still, but he was crying “it hurts, it hurts” over and over. Poor little guy.
Once the blood was taken, they told us it would be a couple of hours until they had the results, so we went to Hungry Jacks for lunch, for a little bit of fun for Sam in the middle of a pretty un fun day. Because the original doctor had been worried about bone infection, and the x-rays had shown nothing, we were feeling like it was going to end up being something rather benign like growing pains.
We got back to the hospital at 2:30, and pretty quickly they brought us into the emergency ward and gave Sam a bed. One of the doctors came and said they just needed to take some more blood, she said they wanted to check something with his white blood cells. She was quite vague about it all. That is when the knot of dread began to grow in my stomach. In my mind, the only reason that they would need more blood would be to confirm a very negative diagnosis. And then we waited. And waited.and waited.
At about 5:00pm a different doctor came to see us. She didn’t waste any time, she said ” I am not going to beat around the bush, I have got some bad news for you, it’s highly likely that your son has leukaemia” At that moment, we both felt our world crash around us, I looked over at Rin as she struggled to keep it together. We both wanted to howl and cry, but Sam was right there and we didn’t want to scare him. To him, the word leukaemia was just a nonsense word, but to us, it was a death sentance . I stepped behind him so that he wouldn’t see me struggling for composure, and Rin turned her head away. We had no way to talk to each other about how we were feeling because we didn’t want to leave Sam alone. We wouldn’t get a chance to be just the two of us for a couple more days… I think this time was the hardest of the whole experience, We had no knowledge of leukaemia or it’s treatment, and Sam was really unhappy, “I just want to go home and go to sleep in my own bed” he kept saying. I wanted to go home to my bed too, then maybe we could wake up and it would all just be a bad dream.
About 7:00pm they took Sam up to the children’s ward in the hospital, with the plan being that he would be transferred to the Royal Children’s Hospital in Brisbane in the morning. Only one of us could stay on the ward with him, so I went back home to pack up some stuff to bring to Brisbane, as they had told us to plan to be up there for a week. Lorinda had sent out a text of our situation when we found out the news, and a group of leaders and good friends from our church offered to meet me at home when I got there.
When I got home, my friends hadn’t arrived yet, and I just kind of wandered through the house. It felt like it had been a lifetime since we left. The groceries were still all over the floor, our breakfast dishes beside the sink. As I looked into Sam’s room, I couldn’t help but wonder if he was ever going to get to sleep in his own bed again. And then there was a knock on the door, and our friends came in, which was so good. At that point, all I wanted was someone to give me a big hug. and there were lots of hugs and tears. Finally I felt like I could let myself fall apart. So, while a couple people cleaned up the kitchen, and put the groceries away, the rest of us gathered in the living room to worship God, and declare his goodness even in this situation, and pray for healing and restoration over our little boy. I knew that I couldn’t fall into despair, but instead needed to fall into the arms of God. It was a really beautiful time and lifted a lot of weight off me. Knowing that we had such a strong community of friends surrounding us also made me feel safe and protected.
Two of the guys stayed overnight and drove me up to Brisbane in the morning, where I was to meet Rin and Sam. That was such a blessing, because with my non existent sense of direction and my emotional state, I am not sure I would have made it in one piece. Thanks guys! I got to the hospital a couple hours before Rin and Sam, so I waited outside for the ambulance to arrive.
When Sam and Rin arrived in the ambulance, I was there waiting for them, Sam was looking pretty happy, with Curious George riding on the rail of the ambulance stretcher. They got him into the emergency ward and got him onto a bed, the nurses there were great, chatting with him and giving Curious George and his new bear hospital arm bands just like his. They even put bandages around their arms in the same place that Sam had a bandage around his where his cannula was. It took about an hour before they had a bed ready on the oncology ward for Sam, so around 2pm we were finally in the ward.
We learned that normally when someone new comes onto the ward, there are a lot of different hospital people that talk to you to help get everything figured out, but since we arrived on a Sunday, none of those people were actually working. The nurse on the ward tried to sort out some accommodation for us, but all the emergency accommodation in the area was full, so he kindly bent the hospital rules a bit and let both of us sleep on the ward the first night. Lorinda slept in the parent’s lounge and I slept beside Sam’s bed on the chair that pulls out into a really uncomfortable bed thing. And then we slept. Not well, but at least it was sleep.
On Monday we were able to meet with the doctor in charge of Sam’s treatment, Dr. Little, she was very approachable and explained what they knew so far about Sam’s condition, that he had Acute Lymphoblastic Leukaemia, or ALL for short. We learned that Sam’s bone marrow was producing white blood cells that were deformed and didn’t do their job properly, and the increased production of these cells was filling up the marrow, not leaving any room for red blood cells and proper white blood cells to form. The pain that Sam was feeling in his leg was probably the pressure from inside the bone of all these cells packed in there. We also learned that ALL was the more common and more treatable form of leukaemia. Within ALL there are also different types and Sam had pre B cell ALL which, again is the type with a more favorable outcome. She told us that the initial phase of the treatment, called “induction” would take a month, during which time we would need to be within half an hour of the hospital, so that if there was any emergency, we could get Sam there ASAP. After the induction stage, there would be more treatment that would go on for a few years, but she didn’t really go into what that would look like, because so much would depend on how the cancer would respond to the chemo in the induction stage.
Dr. Little wanted to start treatment the next day which consisted of Sam going under general anaesthetic, at which time they would take a bone marrow sample, take a sample of his spinal fluid, give his first Chemo into the spinal fluid(the leukaemia can hide out in the spinal fluid and then re appear), and install a “port” which is a little receptacle inserted under the skin and connected to a vein, so that it would be easy for taking blood and administering via I.V. for the duration of his treatment. The positive thing about the port is that when Sam is not being treated, the skin heals up and seals off the port, so he can live a normal life, have showers and go swimming without any extra hassle. The only downside of having a port is the possibility of infection, being as it is a foreign body, in which case it would need to be removed.
So while all this was going on, we still had no place to stay that night, but once the doctor had officially diagnosed Sam with leukaemia, the leukaemia foundation got involved and they supplied us with a hotel room at a nearby hotel at no cost to us! We were so relieved! With so much emotional stress, it was very hard to process everything going on and it was so nice that they sorted that all out for us. That night Lorinda was able to sleep in a real bed at the hotel, and I slept on the ward with Sam.
I must mention all the amazing groups that support people with cancer, it is amazing and so nice to know that there are people who understand what you are going through and care. We were given this big bag from Red Kite, full of stuff: a teddy bear, a diary, two travel mugs, a novel, a bendy pencil, a ball, a pillowcase and a handmade quilt. It made me cry to think that someone had gone to all the work of making a quilt for my little boy, that they had never met and probably never would. In ordinary circumstances if someone had given me that bag of stuff, I would have thought it was nice, but no big deal, however, when you feel like you are losing control of the life you had imagined, any act of kindness, no matter how small, seems to be magnified. More awesome groups: the Starlight Foundation and the Clown Doctors, both these groups came in on Monday and did all kinds of crazy stuff to make Sam laugh and give a bit of a break from the hospitalness of it all. Sam especially liked when the curtain dividing the beds ate one of the clown doctors. I guess it was a bit hungry.
The last time I had talked to my parents was while we were still in the emergency in Brisbane, when everything was an explosion of emotion and uncertainty for us, so it was great when, on Tuesday morning I was able to find some time and a phone, and could ring them and have a really good chat. This time we had a lot more information, and knew there was a high possibility for a good outcome. As I was talking, Sam went wheeling by in a wheelchair pushed by Rin, they were off to get some kind of ultrasound done. I was still on the phone when they got back, and soon after that, it was time for Sam to have his surgery.
A fear that Sam has had throughout his life is that we will leave him somewhere and never come back, so if we are going to be away from him, he always likes to know how long we will be gone, which helps him to cope. The doctors told us that one of us could be there as Sam was put to sleep, however there was no one allowed in the recovery room when the children wake up. We explained this to Sam, and he got quite scared about waking up alone. We told him he would be safe here and that the doctors would take care of him, but he was still really freaked out. Lorinda went in with him while he was being put to sleep, he was sobbing, and then, halfway through a cry, he was asleep.
We were in the room when they brought him back up to us, he was still pretty groggy, and the nurses informed us that he had woken up well with no problem. Yay! As the drugs started to wear off, he began to realise that his body was actually quite sore, and decided he would just not move. Of course, in order to heal well, he needed to move around a bit, so we tried to get him moving as much as possible amidst protests of “it hurts, it hurts”
Now that Sam had had his first dose of chemo, they needed to flush out all the dying leukaemia cells, so they increased the fluids in his I.V. Thank goodness for peeing in a bottle, or we would have been spending the majority of the day and night just walking the long walk to the toilet and back. Everything that he peed, was also recorded so that the nurses could keep track of the fluids going in and fluids coming out. Also we now needed to wear gloves while helping him pee, because his urine was now considered cytotoxic, due to the chemo chemicals they had given him. So, wwwait a second, we have to wear glove to protect ourselves from getting the chemo on our skin… the same chemo that was just pumped through our son. Freaky.