I wish we had gone to Primary's the first time he got sick. Maybe he wouldn't have had to endure so much during that first month. In retrospect, I know that if I ever have a reason to take a child to the emergency room again, it will be at Primary's. I highly recommend it to all you other parents. Not that the other hospitals here in Salt Lake are bad. Mostly, they are pretty good. But at Primary's, everyone is a pediatrician. They're used to caring for children. Plus, the equipment there is for children. Fewer wheelchairs, more wagons. The blood pressure cuffs are tiny. The blood/ox thingy they put on the finger is not a clamp, but instead, it's held on with that non-sticky medical tape. Made for wiggly little fingers. They have Child-Life specialists there, whose job it is to help the kids cope. They do play-therapy to help them understand and accept the things that are happening to them. I'll talk more about that later, because it made our experience livable. It was a really big deal.
But, let's back up to the beginning. My previous entry talks about what got us to go to the ER at Primary's. Matthew had been having fevers, and was on his 31st day with a fever. It finally went above 102 again, so we went to the ER at 3:30 am on July 12th. In the ER, the doctor said there's something serious about a fever that goes on for longer than a week, and asked us if he could test Matthew's blood. He checked the blood and suspected Leukemia.
Leukemia.
It's amazing how much one word can change your life.
Love.
College.
Marriage.
Children.
Cancer.
In the beginning, it's so devastating, and they don't want to overwhelm you, so they start slow. The Dr. in the ER drew us a diagram on a paper towel, which we saved. It's a picture of a bone, showing the different types of blood that your bone marrow makes.
There are:
- Platelets. These are responsible for the clotting so you don't bleed to death if you get a cut.
- Red Blood Cells. These carry the oxygen to the rest of your body, and give you energy. Low red blood cells create a condition called anemia, which most of you are probably familiar with.
- White Blood Cells. There are five (or six?) types of white blood cells. The only ones I've really learned much about are Neutrophils. They are the white blood cells that are responsible for fighting off infection. When you have an infected cut, and you see pus around it, that is made up of white blood cells, which are fighting the infection.
So, we had arrived at the ER at 3:30 am, and at approximately 9am, they checked us into the ICS. The room that Matthew wouldn't leave for 6 days, except for surgical procedures.
That day is sort of a blur, because it was so stressful, as I'm sure you can imagine. I couldn't cry much. I think I was in shock. But I felt like a broken mother, because what kind of mother doesn't cry when they say her tiny son might have cancer? Justin probably doesn't want me to share his reaction (I'll let him do that if he'd like to) but let's just say it was much more normal than mine. I still feel a little strange that I don't often get emotional over it. The problem is that when I do, I totally lose it. For hours. Then I have to take a pill (which I have never had to do before, and I hate it!) to get myself back under control. Matthew doesn't like it when we lose it. He tries to make us feel better. That is SO not his job right now!
At one point, he saw me crying and asked me if a kiss would make me feel better. That same day, he saw Justin crying and said he doesn't have to cry anymore. Then he told him, "If you don't cry, I won't cry either, Dad."
He's such a trooper!
So - there we were on Tuesday morning, distressed and in shock. They drew SO much blood from him on Tuesday. They just kept coming back for more. I was so frustrated because they had already told me he didn't have enough of it, but they just kept taking it. I knew it was necessary, but it's hard to be logical at a time like that.
The cancer doctor came and told us she had looked at Matthew's blood under a microscope, and couldn't find any Leukemia cells. She also felt that there were some viral infections that could possibly be the cause. Some very serious viruses can create some of the same symptoms as Leukemia, and since he had a good platelet count, and she didn't find any Leukemia cells under the microscope, there was a good chance of that. She said 50/50. She said we'd have some of the answers by the next day. She also scheduled a bone marrow aspirate (where they take fluid from the bone marrow) and a bone marrow biopsy (where they take a solid piece) for the next day. She said they probably wouldn't need the biopsy, but sometimes they do. She said they'd cancel this procedure if we had an answer from one of the blood tests before then.
On Wednesday, we got the results of 2 of the 5 viruses they were checking for. The tests were negative, thus increasing the chances that it was Leukemia.
So, we went downstairs to the RTU (Rapid Treatment Unit) where they do small procedures that require anesthesia, but it's not the same as surgery. A Child/Life Specialist came to talk to him, but we didn't really get what she was doing. She showed him pictures of what was going to happen to him, and tried to help him choose a smell for his oxygen mask, but he didn't want to talk to her. Then we went down a hallway and into a huge room with a bed in the middle. There was a donut shaped pillow on the bed, and they had us lay him on the pillow. He flipped out! He was really scared. Then the anesthesiologist started to put the medicine in his IV, which stings, and Matthew really flipped out - worse than I've ever seen him. He was flailing, and you could see the look of terror on his face. The anesthesiologist quickly put the rest of the medicine in the IV, and then put the mask over his face, which scared him more. Then he was out.
It was the worst experience of my life. I'm pretty sure it was Justin's and Matthew's too. That's saying a lot, considering the events of this last week!
Justin and I went back to the room to wait, and we sobbed. The nurses tried to comfort me, and I could not be consoled. We had this one nurse - his name is Irish - and he was with us. He cried with us, and hugged Justin. It was the sweetest thing I have maybe ever seen. He sees this every day. I think it must be the most exhausting job. At the end of the week, he told me he gets much more than he gives in his job. I couldn't do it. Thank heavens some people can!
When Matthew came to, he was still freaking out. In fact, he continued to freak out for 2 more hours. When we finally settled him down, we vowed to never let him go under anesthesia in that manner again.
It took until afternoon to get the preliminary results of the bone marrow aspiration (they got what they needed from that, so they didn't need the biopsy). This is when the Dr. was finally able to confirm Leukemia. I never even heard more about the results of the other tests they had going on.
The Dr. wanted him to have surgery the next day to put in a Port-O-Cath. This is a catheter that is installed in his chest to make IV's easier and more effective. His is under his skin. It's like a silicone drum that has a tube coming out of it. That tube goes into one of his main arteries, so the medicine they put into the catheter will go straight to his heart, and be very effectively distributed to the rest of his body. He will have that until he's done with treatment, in 3 years.
She also wanted to do a spinal tap the next day. She would draw out some of Matthew's spinal fluid to see if there were Leukemia cells in it (this would mean the Leukemia had breached the barriers and affected his brain - unusual, but needs to be treated separately.) She also wanted to administer Chemotherapy right into his spinal fluid - whether or not they found cancer cells there - because it prevents it from becoming a problem.
Chemotherapy. Wow. After one day. That was overwhelming. But these world-class doctors know best, so we braced ourselves for surgery. I immediately started telling anyone who would listen about how awful it had been for Matthew and us when he went under on Wednesday. In the end, it was Child/Life who helped us the most with that. Her name was Karen, and she was Matthew's best friend in the hospital. She coached me on how to talk to the anesthesiologist. She worked it out so that they would take Matthew's whole bed down to surgery, and I would sit up on the bed with him while we traveled. She walked with us and played with him all the way there. When we arrived at the surgery check in desk, she stayed with us while we talked to the anesthesiologist. I explained to him what had happened the day before, and asked him to give the medicine before we got to the operating room.
He gave a little medicine at the desk, making Matthew sleepy, and then we went down the hall. He gave more medicine just outside the OR doors, and that made Matthew really sleepy. Then he said I had to get off the bed, so I did, but Matthew started to get scared, so Justin picked him up and laid him on his shoulder. Then the anesthesiologist gave the rest of the medicine and Matthew was almost completely asleep. Justin laid him back on the bed and they wheeled him away.
They did both the Port (catheter) and the spinal tap at the same time. It took a little over an hour. It was a long wait. But it all went well, and Matthew woke up happy. There was no cancer in his spinal fluid.
They administered the other chemo that afternoon. This is the same medicine he gets now every Thursday. Believe it or not, the chemo doesn't have as many crazy side effects as you would think. In fact the only side effects I've seen on Matthew come from the steroids they have him on. Except the bone pain - that's from the chemo. But there's no vomiting or nausea. Not like they make it look in the movies. I think some chemo can do that, but Matthew's doesn't. Thank heavens! He will lose his hair though - and soon. The doctor said she had a patient once that didn't lose her hair. But she was Hispanic, and they have much heartier hair. It is highly unlikely that Matthew will keep his, and that's okay with me.
It's funny the things you think are important before something like this, and how much that changes. When we first got to the hospital, I saw a little kid with no hair, and it was really upsetting to me. But now, I'm so much more worried about everything else. Losing his hair won't hurt him, or make him sick. So, I don't care. Justin thinks I will feel different when I see it starting to happen. Maybe he's right. We'll find out soon enough. I've seen quite a few eyelashes on his face, so I know it's starting. So far, it doesn't matter to me. I just want my baby to feel better.
Thursday night, Justin (and everyone else that saw me that day, cause I was such a mess) convinced me that I couldn't sleep at the hospital that night. See, I may be broken because I didn't cry a lot, but I felt like if I left my baby's side, I would suddenly lose my tenuous hold on my sanity. But I knew that I needed some sleep and a shower, and I needed clean clothes.
So, I went home. I was delirious. I had been trying so hard to also make sure the other kids don't feel like we forgot about them, so I was looking forward to the opportunity to talk with each of them. I was able to talk with my girls, and at first it was really good. Allison had a lot of questions, and it seemed to make her feel better to have some answers. After about an hour, I was babbling. I'm not even sure my words were making sense. I'm also pretty sure I was pausing a lot to avoid falling asleep. I probably seemed totally drunk. My girls finally convinced me to go to bed.
By now, they had told us that if Matthew's fevers would go away, we could go home on Sunday or Monday. The fevers could just be a symptom of the Leukemia, but they could also be a sign of some hidden infection somewhere, and since he had no immune system to protect him, we needed to be sure.
The night that I slept at home was rough. The fevers were high, and the blood counts were low. Eventually, they decided to do a blood transfusion. I wanted to beat myself up for not being there for it, but when I got there, it was almost over, and Matthew was pink again, instead of yellow. Wow! What a difference. And he really seemed to feel better, too. I'm so glad they did the transfusion.
I will be a blood donor for the rest of my life.
Around the same time as the transfusion, Matthew's fever broke. It hasn't come back yet. It was definitely cause for celebration. He had a fever for 33 days straight.
Friday, they inundated us with information, so we would be well enough educated to go home and care for our son.
I didn't feel qualified.
Justin told me I better not make Matthew stay at the hospital extra time because I was scared. He was right, but it didn't make me less scared.
Okay. I know this next part is gross, so if you don't like to talk about poop, you may want to skip forward to the next paragraph. Friday, we also realized he had not had a bowl movement since Monday. A lot of the medicines he had been given can do that, but the doctor said that can be dangerous. There are a lot of germs involved in that bodily function, and the longer they sit there, the worse it gets. Since he was immuno-compromised, he didn't have the proper tools to deal with germs. So now, even though his fever was gone, we had another condition on going home. Matthew had to poop. They started feeding him laxatives.
Saturday, my sister (who is a Physician's Assistant) called and asked me a bunch of questions about his treatment, and I answered them all, complete with the names of the medications and side effects, and then I felt better. I knew at that point that I know enough to care for my son.
One thing I have failed to mention is that Matthew hates the hospital. That's probably self explanatory, but it's important here. He was sick of people touching him, and poking him, and messing with him. He was sick of being woken up for vitals, and he was sick of all the strangers checking him out. Couple that with steroids, which make anyone combative, especially an angry three year old.
By Saturday, it had become quite difficult to get his vitals. He hated the finger thing for the blood/ox, even though it's made for kids. He hated the thermometer in his ear, and he especially, especially hated the blood pressure cuff!
At midnight on Saturday night, the nurse came in to check Matthew's vitals, and he was NOT going to let that happen. After 10 minutes or so, she had finally gotten everything but his blood pressure. We tried that cuff about 8 times. He was flinging himself from one end of the bed to the other, and crying and screaming. I've never seen him like that. They said it's from the steroids. They call it roid rage. In the process of all of this, he knocked loose the needle that was accessing his port (the drum in his chest for the catheter), only we couldn't see that because it's under his skin. So, when she came back for vitals at 4 am, she saw that half of his chest was very swollen. The IV fluids weren't making it into his bloodstream. Instead, they were being pumped into the tissue in his chest.
They had to take the needle out, and put in a regular IV again. It was so sad.
Sunday morning came, and by then we were praying for poop, as funny as that sounds. It was the last obstacle between us and home. And Matthew was completely despondent by then. He didn't even want to talk to me or Justin, but he would respond in little squeaks. If someone else tried to talk to him, he'd either yell or cry.
Let's just say there were a few miracles on Sunday. Matthew qualified to go home, and we celebrated. The nurse said they get pretty excited about poop around there. He had another chemo treatment. This one was a long one. 2 hours. This was during my regular church time, while there were dozens of prayers said for Matthew. While dozens of people - maybe even hundreds - were at the end of a 24 hour fast for Matthew. My husband and his dad gave Matthew a blessing right before the chemo, and he slept through it. It was amazing. Maybe someday I'll share the details of the miracles that took place that day, but I will say that prayer works. Fasting works. I even think just having people think good thoughts in our general direction works. So, for all of you who did that, thank you. You can never know what it meant to us.
He woke up just as we were packing up to leave, and he was happy to get up and get dressed. He rode in a wagon as we left - free of IV's and that room that he hated. As soon as the doors to the ICS closed behind us, he perked right up, and was his old self again. He talked to each of his siblings while we drove home, and told them each how important it was that he had pooped today.
I love that kid!
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