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Thursday, April 26, 2012

Big Plans

Wow, fourteen days since I posted anything! So much is happening right now, and it's all good, but not much of it has to do with Matthew's cancer anymore. So, once again, I'll say no news is good news.

Matthew is doing fantastically well. At the last doctor's appointment, he was given the green light to return to daycare. We can only afford daycare if I work full time, so I asked my bosses if they would consider a schedule change for me. After some discussions, we all agreed on a schedule, and I'll start next Monday. It'll be 35 hours a week: Mon-Fri 8:30 am - 5 pm, except on Tuesdays, I'll get off at 11:30 am for doctor's appointments. Matthew will have one a month, I will have one a month, for the baby, and Allison will have one a month for the orthodontist. So, we'll spread them all among our Tuesday afternoons, and I should be able to manage it all.

In the meantime, Matthew is extremely excited to go back to "school!" He loves his daycare more than I can describe. He asks me to take him there almost every day. The last few times I have taken him to play, he has noticed that I'm the only mommy who stays. So, now, he tells me he wants to go to school with no mommies. He even said, "That's a X," making the motion of crossing me out. He feels pretty strongly about it. I've been kicked out. But it's good. He wants his independence back. He wants his life back. He deserves that. So, we're working it out for him. I'm so thankful for his good counts right now.

I kind of feel like I'm getting my life back, too. I'm excited to return to work full time. In my work world, I feel like I lost a lot of my identity, working part time. I was such a go-getter before, and then suddenly, I was just there for a paycheck. I'm happy that I can participate in projects, trainings, meetings, and so on, again. It'll be good for me. Cancer became my whole world for a while, and it shouldn't be that way. I don't want to give that monster one more minute of my life than it requires.

I had a humbling experience this week. I met a girl who is 22 or 23, and has two kids - one is 8, and the other is 1. She had her oldest at 16, and he was born with a rare type of cancer in his chin. They had to cut away much of his lip and chin to get the cancer gone. He also had a club foot, and went through some surgeries for that. Since the minute that he was born, this sweet little boy has been fighting for his life, and fighting for some kind of normalcy. He's really small, which can be a side effect from harsh cancer treatments, so I think that's probably why. He has a school bus that picks him up for school every day, and they take him to a special school.

This girl, at the tender age of 16, had this baby who was born into the cancer world. She said she was pretty much alone in it. She lived with her parents at the time, but they never really came up to visit at the hospital, which is where she and her son spent most of their time, because he was inpatient more than he was home. The baby's father was never a part of the picture. Even her friends didn't come visit, as you can imagine. That's a lot for a 16 year old to take in. She kept saying it was always, "just me and him."

At 33, Matthew's cancer, which was almost all outpatient treatment, mind you, was by far the hardest trial I've ever been through in my life. Sometimes, I think I went a little bit crazy from the stress. I cannot fathom what it would be like to go through that at such a breathtakingly young age, and all alone.

This boy beat that cancer 8 years ago. And two weeks ago, his mother got the news that there is more cancer. A different kind of cancer. They call it secondary cancer. You see, cancer treatment has a lot of side effects because they literally poison your body. One of the most horrendous side effects is that it can actually cause cancer. Thus the name secondary cancer.

So, here they are, 8 years later, with the news that they must fight this battle all over again. You always think you know how you would react. My instinct is to say I would break under that pressure, but that's what I thought about any childhood cancer diagnosis before Matthew's diagnosis.

We bought our house from a couple whose 2 year old daughter had fought cancer. Strange coincidence, huh? Anyway, I remember thinking that there was no way I could ever survive that, and my heart was so heavy for them. But the Lord prepared me to handle it. He built me up in the years between buying this house and Matthew's diagnosis, and when the time actually came, I was prepared, and I was okay. The same is true for my whole family. It's amazing, looking back at the steps that took place to get us prepared. Miraculous, really.

So, I can't say I know that a relapse or secondary cancer would break me, because I really don't know. But I think it would. I think that would surpass the limits of what I can handle. But, this girl was so strong. She wanted her independence. She kept saying she had "big plans." She still understood that she was young and had the whole world ahead of her. She just had to get through this dark patch. I was completely humbled by her. She just wanted her son to get well so they could have a happy life together. She said she'd give him her own foot (because of his club foot) or both, even, or a hand, if he needed it, if it meant he'd be whole again.

She helped me to realize that I don't need cancer to be at the center of my world. Am I still angry when I think about how little funding and attention there is for childhood cancer? Yes. Will I still work to raise funds and awareness for the rest of my life? Probably. Children are dying, and they get the smallest piece of the pie, and it's not right. But I cannot let it be the only thing in my life anymore. My family is ready for a fresh start - especially Matthew. It's time we live our lives again.

It's time we make "big plans."

Thursday, April 12, 2012

1 Month Down

Well, Matthew has completed the first month of his Maintenance phase of treatment. It wasn't as bad as I thought it would be. In my mom's support group, there are several moms whose kids are just a couple of months ahead of Matthew, and they are all struggling. They all got the highest arm of treatment in the study randomization. That means twice the amount of Methotrexate. All of them are feeling worse now than they did through the rest of treatment. I feel so bad for these poor kids! Maintenance is a long time for them to feel like this! For most of them it will make up roughly half of their lives before it's through. Watching these cuties struggle, I was really afraid about Maintenance, and I was nervous to start it.

I'm grateful that Matthew randomized into the standard arm of treatment, and I'm grateful that he's handling it so well.

The doctor's appointment went really well. We went to visit a friend in ICS before his appointment. This poor kiddo has had a really rough go of it, and is in the midst of a rough couple of weeks, so Matthew and I went to the dollar store and bought him a bunch of things that he could do in his bed for fun. Matthew was excited to give him his gift, but he was not excited to be in an ICS room again. Every time we try to visit someone, he won't go in further than the door area. I think he's afraid we'll make him stay. Anyway, after our friend checked out his gifts, and picked the first thing he wanted to do, Matthew was done. He didn't want to stay and play at all, because he was too uncomfortable in the ICS room. I can understand that. I didn't want to push him.

Since we had over half an hour left before his appointment, we went downstairs to the cafeteria and got some snacks, then we went outside to eat them. I think it helped him feel a little less stressed to be outside in the sun and fresh air. We stayed out there until Justin came, and then we all went inside together.

The checkup was a pretty typical one. We talked about how he's managing, and the doctor said she was very pleased with his progress. She said it was just fantastic to see how he seems to be feeling. We talked about my pregnancy, and she said that the only precautions I really need to take are to wear gloves when I handle his pills or body fluids (like if he were to wet the bed, I should wear gloves when I change the sheets). We talked about his Make-A-Wish trip, and she said it should be fine for him to go. She said she had recently sent back all the paperwork.

Then the nurse came in and accessed his port. Since we left the house so early for his appointment, I hadn't put any Emla cream on his port site. That's a numbing cream we use, but it has to be on for an hour before port access for it to work, and it can't be on for longer than an hour and a half, I think. Anyway, instead, we used what they call the freezy spray. It's fast acting, but Matthew hates it. He was more nervous about his port access than usual anyway, because it's been a month. So it was kind of rough, and he cried for a while after, but when he stopped crying, he was really over it, and he was okay again. The nurse took his blood for labs, and then we went back to infusion.

Watching the nurse give the chemo was more bothersome to me than I expected. It's interesting how quickly you become desensitized to those things, and how quickly that goes away when it isn't happening daily or weekly anymore.

Anyway, after a quick push of chemo (Vincristine) and some things that clean out his port, we were done. We left, and headed out to pick up Mikey from his carpool. On the way home, I called the clinic to find out about his counts. It was rather surprising!

White Blood Count: 5.2
Hemoglobin: 11.9
Hematocrit: 36.6
Platelets: 344
ANC: 4.6 (or 4600)

These are the counts of a completely healthy child. The doctor said these are fantastic counts, and she can't believe they're this high. Also, I was mistaken - they don't adjust the meds for high counts during the first round of Maintenance. So, we're 30-ish days into this round, and we have until day 84 before it ends, and we don't have to worry about them upping his meds until at least then. The only time they adjust them during the first round is if the counts have tanked. This means we get to continue just letting Matthew be healthy for a couple of months. What a wonderful thing!

Also, she said that he can go back to church and daycare. He's so excited, he can barely contain himself. It's time for me to find full time work, if for no other reason than to fund his time at the daycare.

He's on day 3 of 5 on his steroid pulse right now. The food thing has been apparent, but not obnoxious, as of yet. He did cry for pizza and breadsticks last night, and even though we are trying to be really careful with money, Justin finally gave in and sent the girls for a $5 pizza. Thankfully, his mood hasn't really been affected much by the steroids this week. He's more antsy, and has a shorter attention span, but that's about it.

Last night, Miss Caroline came for his weekly pre-school lesson. The last time she was here, she was working with him on letter recognition, and he said to her, "W-H-Y spells why. Like Superwhy!" She was shocked. She couldn't believe he was spelling small words like that. So this week, instead of letter recognition activities, she brought small work activities. He didn't have much of an attention span, but she got him to pay attention to it for 5 or 10 minutes. The activity was a paper that had A and T printed on it, and then she brought little squares of paper with different letters printed on them. You would put the random letter in front of the AT, and see if it made a word. It took her about two words to get him to understand the activity (something she didn't expect to happen at all, because that's so advanced for him), and then he just started sounding out the words on his own. C-A-T spells cat, and so on. She was floored. It'll be interesting to see what happens with him. She said soon, she's going to have to bring him books to read to her. I'm so grateful that she comes, and keeps working with him so he won't miss out on the preschool he was getting at the daycare. What a wonderful woman she is!

So, for now, we're looking forward to church, and I'm trying to figure out what to do about my work situation. I'll update again soon.

Monday, April 9, 2012

Easter Weekend

I guess I'm getting really bad at updating the blog regularly. The reason is that there's nothing new to say. That's a good thing. Things are getting so much better now, with the lower doses of chemo, and Matthew is playing more. He gets out and runs and plays. I let him play with other kids a lot more, as long as they aren't sick. He's still tired of being cooped up in the house, and when he feels this good, he's a lot more outspoken about it. He wears me out, trying to satiate his need to go somewhere, and run and play. I can't wait 'til the doctors give the stamp of approval for him to return to daycare. That's where he really wants to be. It seems that our general plan is that I will look for full time work (hopefully my own job will open full time hours back up to me, but if not, I'll expand my search within my company, or outside, if I have to). Matthew won't be able to go back to daycare until I have found full time work, for financial reasons, but it'll be a good step in the right direction, just to have the approval. That would also mean he could go back to church. Anyway, in the meantime, the lack of blog posts is very much falling within the "no news is good news" cliche.

In other news, I found out about a week ago that I'm pregnant. Matthew is really excited to be a big brother. All the kids are happy about it in their own different ways. At first, it had to sink in with the girls. They're teenagers, and it's unusual for their mom to still be having babies. But I think they're both really excited now that they've adjusted to the news. Mikey, too. I always wanted another baby after Matthew was born, but it seemed like the time was never quite right. Then, when cancer became our main focus in life, I thought it was ruled out completely. I didn't want to wait until after treatment, because Matthew will be turning seven then, and I'll be older than I wanted to be when I finished having babies. It never occurred to me that having a baby during Maintenance would be a happy medium. It seems like right now, the pendulum is starting to swing back, and although cancer is still a huge focus for us, it's not the center of the universe anymore. There's room for other things. Like a baby. I'm really happy we get to complete our family. Babies bring joy. This will be good for us all.

This weekend was sure a wonderful one for Matthew! In a lot of ways, it was like he was re-introduced to his life. He got to go to 3 Easter parties, complete with boatloads of kids. Saturday, we went to Justin's dad's house for his annual egg hunt. He got to play with his cousins - some who he maybe hadn't seen in a whole year, because of the cancer-imposed solitary confinement. He had so much fun with them! After the egg hunt, we had a fantastic meal. It was so nice, just to relax with family again, after so many months of skipping these things. I caught a few pictures on my cell phone, but not nearly as many as I should have.



After that, we went to Miss Caroline's house for her yearly Easter event. It was our first time there, although she had invited us last year at the daycare. She said a lot of the kids were getting too old for an egg hunt, so she started a new tradition this year: The Easter Olympics. They were cute, relay-type outdoor games done in teams. For example, she dumped a bunch of plastic eggs on the ground, and each team was assigned a color. One person at a time could go get one egg in their team's color and bring it back to the basket. If a little kid got the wrong color, the next kid had to take that egg, and put it in the "bad egg" basket, and they would forfeit their turn to pick up a good egg. The first team to get all of their eggs won. She had about an hour and a half worth of games like that, and completed the event with gold medals and trophies for the highest medal winners. I only got video of this party, and I can't figure out how to get still shots out of the video. I'd post the video, but there are loads of other kids in it, and I don't know if their parents would like that. Anyway, he did a LOT of running at this party. In the video, you can see that it tired him out. He was struggling to run by the last game. It was interesting, because he kept running until he was completely tired out. Then he sat down on the driveway. One of the other parents said to him that he should keep helping to pick up all the eggs, and he said, "I've picked up all the eggs I can."

He definitely knows his limits. He ran right up until the end, compared to the rest of the kids, who walked when they got tired of running. But then he knew when it was time to sit down and rest. I hope someday, he'll feel strong enough to stay up with the other kids again. I was really happy he got to play with so many kids this weekend, but I was sad to see him struggle. Thankfully, it didn't bother him at all. I think he's too little to understand that it's made him a little bit different. I really hate cancer...

Anyway, on to Sunday. We went to my mom's house with the kids for Easter dinner. My sister and her husband and kids were there, too. We did another Easter egg hunt. Matthew has been telling Grandma for weeks now that he will hide the eggs at her Easter party. He's so matter-of-fact about it, and made the decision all on his own. He could not be talked out of it. He was really excited when we got there, and the girls helped him hide the eggs. Then all the kids went out and hunted for them while we had dinner cooking. I got a lot of pictures of the back of kids' heads. But I liked this one, in particular.

This is Alaina helping all the kids count their eggs, so we could be sure we had them all. In this picture, it was Matthew's turn. I like it so much because of his hair! It's so thick these days. You almost can't tell he was bald anymore.

Anyway, we had a good time at my mom's house, and again, Matthew got to rediscover some cousins. My sister has two boys, and Matthew is right in-between them in age. He had a great time playing with them! I hope my sister and I are able to plan some fun activities throughout the summer, so these kids can get together again soon.

We're looking forward to Matthew's doctor appointment on Wednesday. I'm really hoping they'll say he can go back to daycare. I'm also hoping to see good counts. He seems to be handling his Maintenance so well. I really hope his body is reacting like it's supposed to.

I'll update after his appointment to let you all know how it went.

Monday, April 2, 2012

A Low, Steady Dose

Well, I realize it's been a while since I've blogged, so I thought I would today, while I have a quiet moment.

Matthew is doing really well. Exceptionally well. I'm very pleased with his adjustment to Maintenance.

During his heavier treatment, he was always on this big roller-coaster with chemo and his counts. They'd give him chemo, and his counts would tank. They'd push it 'til he needed transfusions, and had no ANC to fight off infections. Sometimes, those things would cause the chemo to pause, but not usually. I think he only had one delay, which is unusual - most kids have more, but he just handled it all so well. So anyway, his counts would tank and then they'd give him a break for "count recovery." So, every once in a while, he had two or three weeks off of chemo to allow his body to build its defenses back up. During these breaks, it was like a window that allowed us to see him as a normal 3 or 4 year old. I cringe at that word - normal. But it's the only way to describe it. Before all of this, he was normal. He went to daycare, and played with his friends, and ate at the kitchen table. During his treatment, he has suffered from a lack of contact with the outside world. It was by necessity, but nothing about it has been normal. I can't wait until his life is more normal again. But anyway, at the end of these count recovery breaks, they would give him more chemo that would tank his counts again.

I was always on watch for fevers. I can hear a child cough from a mile away, and won't let Matthew spend time with a coughing child. Before someone could visit, I'd always ask if they, or anyone in their home, were sick. Matthew watched a lot of TV. He was tired all the time. And this leads me to my point.

I don't think I realized just how tired he was during that time, until the roller coaster chemo stopped. Now, he's on a low, but more steady dose of chemo, and the goal is to keep his counts at an even rate, which is still immune compromised, but not tanked out. I can tell that he feels better. He never, ever complained about it before, but now he doesn't want to watch TV anymore. He wants to play! My sweet, brave boy. He just wants to get back to living his life.

I told him the other day that he doesn't go to his "school" (daycare) anymore. We were driving past there, and he was talking about going back, and the truth is, I don't know if he'll ever get the chance to go back. So, I was honest with him about it. He was SO mad at me! That's HIS school, and he WILL go back! Now, more than ever, I see that I need to find a way to make that happen. He needs his friends. He needs the lessons he learns there. He needs the teachers, who love him so much.

I can't wait for him to be off treatment completely. Right now, it seems like an eternity to wait. 2 more years, and 5 more months. Well, I guess closer to 4 months now. I know it'll go by so fast, and then we'll be able to move on with our lives, but from this angle it looks awfully long. For most cancers, treatment is less than a year. Of course, there's usually a trade-off of prognosis. I wouldn't dream of trading his good prognosis for shorter treatment.

And in the meantime, Maintenance seems a lot better, so far. Since he started Maintenance, he's had the croup, and a cold, and he fought them both off on his own. This is a good thing. No fevers, no antibiotics. Just good old Neutrophils, fighting off infection the way God intended.

In spiritual matters, the LDS General Conference was this weekend, and I swear, it's like they were talking to me. I know it feels that way every time, but I don't know if I've ever heard so many references to sick children, or families facing adversity of monumental proportions. Elder Ronald A. Rasband gave a talk specifically about this. His grandson was born with major health problems and spends a lot of time at Primary Children's. He said the staff there are angels, and they are aware of the worth of every tiny soul they care for there. Boy! Did he hit the nail on the head or what? Sometimes, in quiet moments there, you can feel the angels. Especially in ICS. And he talked about how hard it is to go through times like this, but how much growth you experience from it, too. I think it was in his talk, but it could have been another - but it was said that if we were to see someone drowning, we wouldn't ask them if they needed help, we'd jump in and help them. He said it should be the same when we see a family suffering from overwhelming adversity, such as life-threatening illness. It made me realize that I do this a lot. I ask people if they need help, and I know better because when we were in crisis mode during the first few months of Matthew's treatment, the thing that helped me the most was when people didn't ask, they just did. So many people showed up and knew their unique way of offering help, and they just did what they could. With all of the efforts combined, we were carried through. I will be better about just doing something from now on. And to those of you who did all those things for us - thank you. It really was like being rescued while drowning. We'll never forget the kindness we were shown during that impossibly difficult time.

Matthew's next appointment is April 11th. I'm anxious to hear how his counts have held up for a whole month. If his ANC is 1000, they'll leave his doses as they are, which would be a really great thing. If it's too much higher, they'll increase his dose, which could make him tank. I'm nervous that will happen. He always has better counts than they expect, so I think he'll end up with higher than usual doses. If his ANC is low, they'll decrease his dose and try to work their way back up to the current dose.

For the last couple of months, his doctor has been telling me to wait a couple more months to talk about daycare or preschool. I'm hoping this month will be the month. Poor Matthew might not survive another month.

I'll update again soon. If not before, than after his appointment.