Matthew has had a really rough week. But it started great!
His counts were great last week, as I mentioned in the last entry. So we made plans to do some fun things that he would enjoy. We spent Monday morning at his "school" (daycare) with his friends. The people at the daycare are so fabulous, and no one seemed to mind a mom and a kid who is no longer enrolled hanging around. Matthew had some breakfast with his old class and then went outside and played with them.
I'll be posting a video later, but can't seem to get it to work...
They played outside for nearly an hour, because they wanted Matthew to be safe from the germs that are more concentrated indoors. Finally, we went inside, and he did "circle time" with his class. His teacher is SO good at what she does. They talked about numbers and letters, they read a book and danced to music with instruments. He had a BLAST!
Once he was worn out and wanted to go home, we went to Allison's school to sign a paper she needed, and then we went to the dollar store. By the time we got there, Matthew was complaining about some tummy pain. He still wanted to go inside the store, though. I thought maybe he needed to go to the restroom. So, we went into the store, and started choosing a prize for him, but he lost interest, and said he wanted to go home because his tummy was hurting. So I bought what we had in the cart and left.
By the time we got home, he was really crying. He ran in and went to the restroom, but it didn't help. He was really in pain. So I gave him half a dose of his pain medicine. I always start with half a dose, so that I can give him more if he needs it. I've never had to give him the other half before. Now keep in mind that this is a narcotic pain killer. He's a cancer patient. Anyway, I gave him half a dose, and within a few minutes, he was in my bed screaming in pain. I gave him the other half of his dose, and then called the clinic. They could hear how he was crying, so they got a nurse for me to talk to. The nurse got the doctor, and the doctor said they wanted us to come in so they could see Matthew.
By the time I got off the phone with them, he had fallen asleep. At this point, I wondered if the pain was so bad. I wondered if I should wake him to take him in, or let him sleep. In the end, my caution won out. I had already called the clinic - I should really just take him.
It's a good thing I did! Because when we got in the car, he was crying again, but by the time we got onto the freeway (5-10 minutes from our house) he was screaming in agony. I've never seen a child in so much pain before. It was the longest 30 minute drive of my life! Poor Matthew probably feels the same times ten!
At the clinic, they said it could be a twisted intestine, a hernia of some sort, appendicitis... they really weren't sure. The one thing they were clear about? They didn't think it was related to his cancer or his treatment. Somehow, that was more upsetting to me. Seriously - how much bad luck can one kid have?
They talked to me about X-Rays, Ultra Sounds, and surgical consults, all the while Matthew was laying on the bed alternating between screaming in agony and sleeping. My phone doesn't work in the clinic, and for some reason, I can't send email from it - I can only receive emails, but the hospital has a pretty good WiFi connection everywhere you go, so I was trying to send Justin messages on Facebook, but I found out later I wasn't getting his responses, so he was freaking out.
I think that day was as hard on me - maybe even harder - than the day they said he might have Leukemia.
I've never seen anyone in more pain, with the exception - maybe - of mothers in labor. The expression he would get on his face when the pain would come is something that will forever be burned into my memory.
It was the first time I questioned whether or not I was strong enough to endure this. Will this experience make me a better person or a bitter person? Will I emerge from this dark time in life as a strong, vibrant supporter of children everywhere, or a broken woman who is all used up? I'm still trying to answer those questions, but I definitely feel stronger today than I did during that awful time when they didn't know what was causing the pain.
We went down to X-Ray, which makes me feel paranoid now because of the radiation. They took some images of Matthew's abdomen, and the pictures answered nothing. The doctors were trying to get a surgical consult, but decided to do an Ultra Sound first.
Matthew passionately hated the Ultra Sound. I didn't want to hold him down, but he was kicking the tech. The tech was so sweet. He said, "I don't blame them for kicking me." He handled the whole experience with such empathy. He took images of most of Matthew's tummy. They checked his intestines, his appendix, his kidneys, his bladder. That's when they spotted the kidney stone. It's lodged in his ureter, which is the tube that empties the kidney into the bladder. I've heard that when the stone moves through the ureter, that's when you have the most pain. So, that explains why Monday was so rough on Matthew.
So, they admitted us in order to give him IV fluids (the more fluids, the more he'll urinate, and the more likely he'll be able to move the stone) and pain medicines. We had to save all of his urine and the nurses would pour it through this filter, in hopes of catching the stone so they can analyze it.
The doctors said the kidney stone is most likely not related to his cancer or a side effect of his treatment. There is one type of medicine that he has been given once, about a month ago, that can rarely cause this, but it has something to do with how much sodium is in your blood - or something to that effect. Bottom line, the doctors think it's unrelated. They want to analyze the stone, in order to get a better understanding.
Monday night, Matthew had some pain each time he woke up to go to the bathroom. So, we stayed ahead of the pain with a low dose of Morphine - half of what he's allowed. Tuesday morning, he had a rough moment, so we gave him the other half of his dose. From Monday night to Tuesday morning, he slept for like 13 hours straight. Maybe more. When he finally woke up, he was wide awake, and wanted to play. He spent Tuesday running me ragged.
Now that his blood counts are up, he has his energy back. In a way that he hasn't for at least 6 months. So, he wants to play! I think maybe he's even making up for lost time.
We rode bikes around the hospital, did crafts (he made a picture of a man completely out of googly eyes and glue on construction paper), played with toys, watched movies. He was hardly ever still, and required me to entertain him.
I slept like a rock on Tuesday night, which never ever happens at the hospital. Wednesday, it was more of the same. No pain. Lots of energy. We all started to wonder what was going on. So the doctors asked for another Ultra Sound. We got the same tech, and Matthew was much calmer this time. Thank Heavens!! The Ultra Sounds showed the same stone in the same place.
No change.
That was seriously frustrating! This week had been scheduled as a week off for Matthew. No doctor appointment. Only a pill a night, plus his antibiotic on Monday and Tuesday. No injections, no anesthesia. Instead, we spent the whole week in the hospital. He wasn't in pain anymore, and nothing was happening. We were just waiting.
So the doctors called a urologist. The urologist looked at all the images, and said this could take up to 30 days to pass. The doctors felt that we would be able to manage the pain from home, and gave a prescription for Matthew to drink 1.5 liters of water a day. That'll be interesting, but we'll work it out. That 4 days in the hospital was pretty tough!
Justin was helping a friend move all week, so I was up there alone with Matthew pretty much the whole time. Allison was away at camp for school. Alaina and Mikey were left pretty much alone to prepare school clothes, pack lunches, etc... We had to make sure everyone had proper rides to and from their stuff all week. It was crazy!
I finally came to the realization that I need to stop trying to do all the things I did before. Carpools especially. I have finally arranged it so that all of my kids have a ride to and from school without my help. People are so kind and generous! Sometimes it's hard to accept that level of help. I hate that this cancer has impaired my ability to parent ALL of my children. I have missed out on so many school events, already, and now I can't even drive them to and from school. It makes me feel like I have somehow failed them. I know that if there was ever a time for me to accept help from others, it's now. I just wish I could do those things for my kids. I don't want them to feel like Matthew is the only one who is important. I guess as a mother, this is one of my biggest challenges in this cancer world. I sure am thankful for loving friends and neighbors who have reached out to me and offered their help.
Matthew and I came home from the hospital yesterday. As we packed up, we realized that his blanky has gone missing. It still hasn't been found. He's pretty sad about it. I'm worried because when procedures stress him out, rubbing the tag on the blanket is the way that he copes. The hospital is still looking for it among their laundry. I pray they will find it!
We got home yesterday just in time for me to turn around and leave for work. I was a mess when I got there, but thankfully my leaders are amazing. They gave me time to wrap my head around taking phone calls, and then I was fine. Justin said Matthew had a really fun time at home. We're both glad to be here!
Below are some pictures of our week.
This is a little closet-like space in the ICS unit at the hospital where they keep toys and activities for the kids. The other times Matthew has stayed there, he was too sick to be exposed to anyone else, so he had to stay in his room. Thankfully, this week he was well enough to come out and play!If you really look, you can see his IV coming out from the bottom of his shirt. We have to keep the IV stand with us when we go out and about. He wears a mask so that he doesn't have too much exposure to other people, and also to ensure he doesn't expose another child to something.
He likes to watch out the window.From this room, we could see the people coming into the hospital and leaving. He liked to imagine that the kids who were leaving were going home from staying at the hospital.
He also liked to watch people throwing coins in the fountain and making wishes. We talked a lot about what his wishes would be. He told me he wished, more than anything in the world, to be at home with his brother and sisters. He misses them so much when we're at the hospital!!
Also, from this window, you can see the helicopters landing at the University hospital on the roof. That was always exciting for him, but sad for me, because it meant someone was being Lifeflighted. They have a similar landing pad on top of Primary's, which we could also see - just not as well.
This is the "Wiggle Bike." The challenge is keeping up with him with the IV stand, and not tangling lines.
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