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Sunday, September 9, 2012

Florida - Part 1

Wow, only 2 months since the last entry! Life sure does get away from you sometimes, doesn't it?!

Florida was so much fun, and it was this amazing trip that our family desperately needed. I'm so glad that we got the opportunity to go. Thank you, Make-A-Wish! Since we got back, things have continued to be insanely crazy in our house. I still struggle with my illness (for those of you reading who don't know me personally, I lost the baby in May, and the miscarriage triggered a catastrophe in my body. On Memorial Day weekend, I was diagnosed with a condition called Pseudotumor Cerebri, and it took months for the pain in my head to recede and for my eyesight to become livable. I have good days and bad days. That's why I don't blog like I used to. I hope to do better soon. I hope to feel better soon! It's slow progress, but I'm thankful for my doctors). But now that I'm not working anymore (I was laid off August 10th), and the kids have started school, things seem to be mellowing out a bit.

Matthew goes to preschool now, just up the street from us. He loves it, so far! It's called Little School Preschool, and he talks about it a lot. Alaina is driving out to West Valley to Hunter High so she can finish her senior year at the same school. Allison and Mikey have started their new schools here in Stansbury, and seem to be adjusting nicely. I'm working on getting myself enrolled in school, too. I'll know more by November. It's funny. I was reading some old blog entries today. Back to the beginning, kind of a thing. I read a statement from myself that I don't know how pediatric oncology nurses can do a job like they do, because I never could, but I'm grateful someone can. Turns out I think I can. That's what I plan to go to school for. Maybe not pediatric, but I want to be a chemo nurse. It's amazing, the things that can change in a single year.

But I digress. I wanted to talk about our trip to Florida! This trip was just what our whole family needed. It injected joy and hope into our lives, which had gotten pretty dark and sad for a while. I'm just going to give a play-by-play, to the best that my memory will provide.

We left for our trip on a plane from Salt Lake to Minneapolis at 6 am on July 9th. I always heard you should arrive at the airport 2 hours before your flight is scheduled to leave so you'll have plenty of time to get through your baggage check and security. FYI, at 4am in the SLC airport (yes, we did that...) the only employees on the clock are the ones buffing the floors. We waited in line to check our baggage for 1 hour, when they finally started accepting baggage at 5am. They promptly told us we had done it wrong and we needed to go get a paper from a machine over there and then wait in line again. By now, the line was very long, and I was not happy. But we did what they said, and the line moved quickly, and all was well in our very tired world. I was so nervous about getting through security because of Allison's braces, Matthew's port, Matthew's medicine, etc... but it was a piece of cake. It actually went so fast that I had to grab my shoes and get out of everyone's way to put them back on.

Then, we found our gate and waited. When they started seating people, we had no clue what they were talking about, so we stood in line with all the first class folks, looking silly. We were in the last group to board the plane, so we continued to look silly until they let us on the plane. Matthew got the window seat on one row, and Mikey got it on the other. The flight to Minneapolis was uneventful, but it became clear that I am much more afraid to fly than I used to be, and Alaina hates it. Also, Matthew thinks it's "like a ride." Especially if there's turbulence. I always tell him what a superhero he is, to fight cancer so bravely, and he thinks I'm weird. But come on... a 4 year old who thinks turbulence is fun? (says the lady whose knuckles turn white from holding the chair so tight if it even gets a little bit bumpy...)

So, we landed in Minneapolis (which is really pretty from the air! Very green and lots of lakes), and we thought an hour delay would be long. Turns out, not really. By the time we found our gate, it was time for the first groups to start boarding. This time we knew our place and boarded the plan at the appropriate time. This time the girls got window seats. This flight would connect us to our destination - Orlando. The flight was a lot more bumpy. A lot. I noticed that after we took off, it took a while for the plane to even out and fly smoothly. About 45 minutes before we landed, the captain got on the loudspeaker and told us that we were going to be making a "code yellow" emergency landing. The plane has 3 hydraulic systems, and one of them had leaked out all of its fluid, so they would be relying on a backup system to land. It was no big deal, he assured us. This is the kind of thing they are trained for. But just in case, the flight attendants were going to finish the in-flight service early so they could strap themselves in tight for the landing. Oh, also, they couldn't land the plane too close to the airport, so we would be way out at the edge of the landing strips, and there would be an emergency crew waiting there for us. You know, like a firetruck, ambulance... etc. But it was no big deal, he assured us again. A few times. Once they had checked us all out, there would be a little truck, called a tug, that would pull the plane closer to the airport so we could exit the airplane.

All jesting aside, I have to give the crew of that plane some credit. It really was no big deal. They took their precautions, and the landing was fine, the tug pulled us in, and all was well. We were just about an hour late.

There was someone from Give Kids The World waiting at the airport for us. She helped us get our rental car, and gave us directions to Give Kids The World. By the time we got there and checked in, we were all exhausted. Before you get any tickets to the theme parks, you have to attend an orientation class at Give Kids The World. There was one scheduled for roughly 2 hours after we arrived. So, we decided to rest a little bit, leading up to that. Then we'd hang around the village, and go to our first park in the morning.


I'm lame, and I slept through it. I was super tired. So, then it delayed our start the next morning. We had breakfast, and then they all had to wait for me to attend the class before we could leave for the day. Luckily my kids are amazing, and on that first day, when we were so exhausted, the girls took Matthew out to play while Justin, Mikey and I snoozed.

Here are some pictures of Give Kids The World, and our amazing Villa:

 This garbage can has vacuum power, so if you hold a napkin or paper up to it, it sucks it in. Matthew would HUNT for things to put in there!

 This train drives all around the village looking for people walking somewhere. If they see you walking, they stop and offer you a ride, wherever you're going.

This is the Ice Cream Palace. I think this was the one place ALL my kids liked the most. Some days, they ate ice cream 3 times, just because they could.

 This was a HUGE pool, and none of it was deeper than 3 1/2 feet. It was such a fun place to hang out with the family. There is a splash pad there, too, but it's behind the picture.

Here we are, outside of our Villa, just as we arrived.

This is the bedroom the boys slept in.

And the living room. That couch becomes a queen sized bed, which the girls shared. This way, they could stay up and watch TV, if they wanted to. Turns out they really just wanted to sleep, so they had to kick us all out at night.

The full kitchen, which was nice because we had dinner in the Villa most nights, out of sheer exhaustion.

The master bedroom.

With a nice view (if you can see past that funny looking lady!)

Okay, so just this much of the trip has become a HUGE blog entry, and my kids are feeling neglected. So, I think I'll make this a two-part deal. Either later tonight, or tomorrow, I will move on and talk about the theme parks.

I did say a few months back that I was just as excited about Give Kids the World as I was about Disney World, and I have to say, they did not disappoint. They treated us with so much kindness, and catered to our every whim while we were there. Whatever it took to make this a dream family vacation. If I lived in Florida, I'd find a way to volunteer there, because there is such an amazing spirit there, where they are granting the wishes of so many special children. I've never been somewhere that was more geared towards children. I felt like I hardly had to watch Matthew when we were there, because he couldn't possibly do any damage. This place was made for kids like him.

More to come...

Sunday, July 8, 2012

Leaving on a Jet Plane

Okay, I think I'm coming to accept that it's difficult for me to find time to blog these days. But, here we go.

To update about Make-A-Wish, we had a big reveal party for Matthew at the Wishing Place. It was really neat. He got to raise a star to add to the star sculpture on the ceiling, and it will stay there forever. Then, we went up to the Wishing Room, he unlocked it, and inside was the Wishing Wizard! He did not expect that. He wasn't sure what he thought of the guy, but he talked with him. He made sure to stay far enough back that the wizard couldn't grab him. They had a nice talk, and reviewed Matthew's wishes. The wizard told him he was going to be able to go to Disney World and meet Mickey Mouse and see his castle. After chatting for a few minutes, Matthew gave him a hug, and we went downstairs for cake and festivities, which included face painting and balloon tying. It was a lot of fun. Then, we got to go out back and throw coins into the wishing well.

So, with all of that said and done, tomorrow we leave for Florida. It has taken a lot of waiting to get to this point. The last few months have been really rocky, and knowing that this trip was on the horizon often kept us going. We realize that we will come back to all of the same problems, but it will be with a renewed sense of wellness, and family togetherness, which we currently stand very much in need of. Not that our family is splintering, or anything, we just need a few days to connect, without all of the outside stresses bearing down on us. That's what family vacations are for, right?

I keep hearing, over and over, that when you're on a wish trip, they totally roll out the red carpet for you. You don't have to wait in lines, the kids are showered with gifts, it is completely stress free. So far, that has been very true. We didn't have to do any planning. We have just packed our bags, and tomorrow, we will show up at the airport. When we arrive in Florida, someone will be waiting at the airport with a sign that has our name on it to take us to our rental car.

When we leave the airport, we will drive to Give Kids the World (or GKTW for short). In a previous blog entry, I said that was inside of Disney World, but I was mistaken. Give Kids the World is a separate resort, or theme park, if you will. It was built specifically for wish kids, not just with Make-A-Wish, but with multiple wish granting organizations throughout the country. The only way you can stay in the GKTW village is if you are with a wish child. The accommodations are a 2 bedroom villa with a kitchen and laundry room. It's built like a village, and the mayor of the town is a rabbit, named Mayor Clayton, who will come and tuck the kids in at night, if you sign up for it. There are restaurants, a wonderful pool area, miniature golf, and snack carts with delivery. Everything is free.

GKTW is within a 15 minute drive of Disney World, Universal Studios and Sea World, all of which we will get passes for. You are given a button to wear, to identify yourself, and the parks bend over backwards to make it special for wish families.

We're all packed and ready to go now. Just winding down for the evening. Our flight leaves at 6 am tomorrow, so we need to be to the airport by 4. It'll be a long day, but by this time tomorrow, we'll be in our little villa in Kissimmee, Florida.

The other thing on my mind is this. On this day last year, Justin and I both had strong suspicions that Matthew had cancer, but didn't want to alarm each other, so we hadn't talked about it. We were waiting for his fever to go back up to a high enough temperature to justify taking him to another ER, so that we could have some answers. I can't speak for Justin, but I felt desperate at this point, for someone to figure out what was wrong with my baby and help him. The ER doctor was the sixth doctor to see him for his infection in a month of infection, fevers, weight loss, poor appetite, and lethargy.

We will be on our trip when the 1 year anniversary of Matthew's diagnosis hits. He was diagnosed on July 13th, 2011. Most families take this time to allow themselves to reflect, mourn what has changed, grieve what's been lost. Even if the outcome has been the best possible outcome, nothing will ever be the same, right?

But, cancer has already taken enough from us. It's not going to steal our happiness while we're on this trip. Instead, I want to celebrate Matthew's life on July 13th. Matthew has fought a hard battle, and so far, he has been successful. He is a different child than he was a year ago, in many ways, but in many others, he is unchanged, unblemished by this awful thing that was thrust on him. His sweet nature, and charismatic personality is still in tact. On Friday, July 13th, we will celebrate his life. May it be long and healthy!

Saturday, June 23, 2012

Long Time, No See

It seems that my blog entries are becoming fewer and much further in-between. This time, it was because of my own health. I have had a rough couple of months, since shortly after the last blog post, and am just now well enough to sit at a computer - and look at it - for long enough to blog. Please don't take this as a lack of interest or commitment in my blogging, because as my health improves, my ability to write will, too. I am passionate about sharing Matthew's story, and about documenting it for him to have when he's older.

With that said, I'll start with an update on his health since April. He has done remarkably well in Maintenance. For a little while, it even seemed like he was doing too well - if there is such a thing. See, the goal of Maintenance is to suppress the cells that make the cancer, while not tanking blood counts. It's a low, steady dose of chemo, and the reason for the suppression is to ensure that the cancer doesn't come back. The easiest tool to measure that suppression is ANC (Absolute Neutrophil Count). Forgive me for repeating myself, but I know this isn't everyday language for everyone, so I'll briefly explain. Neutrophils are the portion of white blood cells that fight infection. Most people have a count ranging from 2000 to 8000 at any given time. During Maintenance, they like to keep it between 750 and 1500. This shows sufficient suppression of the cancer growing cells without tanking the immune system.

For the first two months of Maintenance, Matthew's counts were above 2000. It was nice, because we didn't have to worry about infection so much. He has been going to daycare, and playing with cousins. We've been to family parties - for once! - and we've really enjoyed the normalcy of it all. But, it also makes my heart feel heavy on some days, because if those cells aren't suppressed enough, it seems to me like he's at a greater risk of relapse.

Relapse is the ugliest word I know.

So, on his third appointment, his doctor was prepared ahead of time to explain this all to me, and also to increase the amount of daily chemo he gets. This chemo is called Mercaptopurine, or 6MP for short. After a month of increased 6MP, if the counts were still high, we would also increase his dose of Methotrexate, which he takes only on Thursdays, but it's 6 pills.

Knowing that his counts were supposed to be lower, I readily accepted this plan. It does run the risk of tanking his counts, but summertime is a good time to figure all of this out, because the kids are out of school, so we have lots of help if he can't go to daycare.

Surprisingly, after we had this discussion, when his blood test results came back with counts, they had lowered on their own. His ANC was 900. We don't really know what caused it to come down, so his doctor ordered Home Health to come out and get a blood draw in two weeks, which was last Tuesday. That didn't work out. Since we've moved, we have a new Home Health nurse, and he was very unfamiliar with pediatric cancer, he struggled with the port and couldn't get blood, so we're going to go up to Primary's on Tuesday, I think, to get his counts.

Also, at his last appointment, they did his lumbar puncture. He will get one every three months now, until the end of his treatment. He used to get them almost every week, so this is an improvement. Anyway, when they do a lumbar puncture, they remove some spinal fluid to make room for the chemo they're adding. The spine and brain are very pressure sensitive, and too much or too little fluid can wreak havoc. Also, it takes a while for the body to regulate it. This time, there was too much spinal fluid removed, and he got what they call a low pressure headache. He was pretty miserable for about a week and a half, and we went through half as much pain medicine as we have for the rest of the year, combined.

He's feeling much better now, and things feel like they're back to normal. It's amazing how much hair he has! Justin had to cut some around his ears last night, but he'll need a real haircut before our trip to Florida, which is in 2 weeks. It'll be the first time we've cut all that new hair. I'm sad because new hair is soft, like a baby's, and that feeling will be gone. But the bright side is that once it's gone, you'd never be able to outwardly tell that he's gone through what he's gone through this year. Unless he had his shirt off, because then you'd see the bump where his port is.

The one last thing to update is his drop foot. I don't know much about it yet, but it's caused by Vincristine, which he gets in his IV once a month. It's painful, I know that, and after his Vincristine the last few times, he has had a lot of pain for a couple of days. It's on the top of his foot, where it connects to the leg. I guess you could call that his ankle, but I think of the ankle on the side. Anyway, it's nerve damage that's happening there. A form of Neuropathy. It makes it really painful for him to walk, especially while there's still Vincristine in his system. It isn't permanent, and they can help him through it with physical therapy, which we'll be starting in a few weeks. Then we'll understand more about it, I think. I'm not sure if he'll continue to get all of his Vincristine, going forward, or not. Some of the other moms said they stopped it when their child had drop foot, and some said they lowered the dose, and some said they didn't change it at all. There aren't that many - maybe 5 out of the 150 or so in our group, so we don't have a lot to go off of. We'll just have to see how his doctors want to proceed.

I'm torn. On the one hand, Vincristine is part of the plan for ALL, which is tried and true, and all together it gives us his good prognosis. I don't want to compromise his cure rate. It's that simple. But on the other hand, we're saving his life so that he can live it. I don't want him to be permanently scarred by this. I want him to have every opportunity in life that other kids have. But a hard lesson I've learned this year is to look at the alternative. Better to have problems with the feet for life than the alternative, which is relapse, or worse. That's the cold truth of it, right there. In black and white. So, it'll be something we'll have to decide once the doctors have evaluated him, and once we understand the risks and benefits of both sides, I guess. Then, of course we'll pray and make a decision together.

It seems like such a small thing to worry about, really, in the grand scheme of things. I've seen so many kids go through so much worse. I guess I just want to have my cake and eat it too. I want him to live, and I want him to be able to move on with his life, forgetting that cancer ever took a minute of it away from him.

I read somewhere today that a wound is what lets the light in. It was so powerful to me that it brought me to tears. All the wounds my family has had inflicted on us during this last year (which is a lot more than the cancer alone) will make us better, in the long run. Right now, we feel tender, maybe a little too exposed, or vulnerable, but years from now, we'll look back on this and be able to see that it helped us become what we will be then. It's what the refiner's fire is all about. Gold goes into the fire messy, and comes out beautiful. Maybe the drop foot will be a blessing in the end, even if that's hard to see now. Maybe the same is true about the cancer, and the other crises we've had. Only time will tell.

The other day, I found this image and quote on Facebook, and it made me feel very hopeful.

"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history, it becomes more beautiful."

~ Billie Mobayed

Tomorrow, I'll blog about Matthew's second trip to The Wishing Place. They revealed to him that his wish will be granted, and held a star raising ceremony. It was pretty special! Stay tuned. 

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.

Thursday, March 22, 2012

Making Up For Lost Time

Well, it only took me 9 days to forget a pill. In a classic facepalm move this morning, I realized, while driving home from dropping Mikey off for his carpool, that I didn't give Matthew his pill last night.


Maintenance started less than 2 weeks ago. He hasn't even tried out all his new medications, yet.

But, on the bright side, in 8+ months, it's the first pill I've forgotten. This particular pill, 6MP, has to be taken on an empty stomach. No food before for 2 hours, or after for 1. That doesn't really happen much with Matthew, except at bedtime. But sometimes, he has something to eat at bedtime. So, then I wake him up a few hours later to take it, which is really fun. Really.

Well last night was one of those nights when he wanted something to eat at bedtime. Any time he asks me for food, I give it to him, because he's eating so few calories right now. So, I gave him a corn dog at bedtime, and then I put him to bed, planning to wake him up in 2+ hours to give him his pill.

Except then I fell asleep.

So, after totally beating myself up over it this morning, I told my dear husband, who barely batted an eye. He is so good to me, especially when I'm being hard on myself. So then I called the clinic and they said not to worry about it either. They said don't double up on it, just skip it for the day, and give him his regular pill tonight.

Okay, I guess it's not the end of the world. He will get roughly 950 more of them in the next two years and 5 months.

In other news, Matthew is feeling really good - I can tell. He had his preschool lesson from sweet Miss Caroline last night, and he flew through what she had planned. He told her, "W-H-Y spells why, like Superwhy." She was blown away. She didn't realize he was starting to spell small words, because they haven't had the chance to sit down and go over actual school stuff in a month or two. When he isn't feeling well, they mostly play with Silly Putty and then play Memory. But last night, she said she needs to up his lessons a bit.

That wouldn't have gone so well if he wasn't feeling well, or if he was on steroids. Because when those two things are going on, he won't pay attention. I'm so grateful that she's so patient with him!

One thing that happens, though, when Matthew is feeling well is that he gets cabin fever. Combine that with Spring fever, and he cannot stand to stay in this house for one more day. He desperately wants to get out and play and get back to living his life.

At his last two clinic visits, I've asked his doctor if we could start looking at preschool or daycare again, and she has said we need to wait. We need to give it a couple of months to see how he settles into Maintenance. I wouldn't have a hard time being patient, except that since he's feeling well, he is having a REALLY hard time being patient. He runs me ragged trying to keep up with him.

I don't blame him, though. He has missed 8 months of his life. In 4 year old terms, that's a LOT of time! My soul rejoices when I see him acting like a normal 4 year old again. I feel like I'm really starting to get my little boy back. So, for the next few months, my primary focus in life will be helping him make up for lost time.

I don't think I've ever been more grateful for anything in my life than the fact that I get to help him make up for lost time right now.

Monday, March 19, 2012

Maintenance - Week 1

Well, we've completed most of week 1 on Maintenance. So far, it's mostly okay. It's different, not having the nurse come on a Monday morning. I haven't freaked out over lack of counts yet. Hopefully, I'll be able to continue to maintain my cool. No appointment tomorrow, either. It's nice to be making other kinds of plans. I'm going to take Matthew to my friend's house to play on the Wii with her daughter while we visit. I still haven't ventured to take him many places, but this friend's baby is also immune compromised, so I know they're also really careful about germs and exposure. It'll be wonderful to spend the day with friends, for both Matthew and for me!

Also this week, my sister-in-law will be coming with my niece, who Matthew LOVES to play with! They're bringing cupcakes.

It seems like we're taking the first steps into a much happier time for both of us. Hopefully, the whole family will feel the effects of that.

Week 1 was a little rough, because of the steroids. I really don't think most kids deal with them the same way Matthew does. They're really hard on him. He is always an emotional mess when he's on steroids. They all are, but it gets pretty insane with him. During his steroid treatments, it is my full time job to care for his needs, and he won't do any activity alone. If he wants to watch TV, I have to watch with him. Being in the room with his isn't good enough. There is no independent activity. I love spending time with him, but during these times, nothing else gets done at all. I'm glad they're only 5 day pulses, but even so, I will be counting down the months now, based on how many more steroid pulses he has. 1 down, 28 more to go.

He also gets really hungry on steroids. He kept me running every minute during the day all week. There were dishes all over the house from his food needs. That's a good thing, because he needs the extra padding. He was looking pretty thin lately, and the nurse and doctor had both asked about it. I was worried we were going to have to take some kind of action, like appetite stimulant drugs. Eventually, if they won't eat, it leads to a feeding tube, which I really want to avoid. I don't think that will happen with Matthew, though, unless he gets bad mouth sores.

It's been roughly 24 hours since his last dose of steroids, and already, he's content just to be in the same room with me, and he didn't quite finish his bowl of cereal this morning. It's wild how fast the main effects of that drug wear off.

It'll be nice to see how this week goes, without the steroids. He'll be introduced to a new form of a chemo he's had lots of times. Methotrexate - which he's had in his IV plenty of times, and in his spinal fluid lots and lots of times - but this time it'll be in pills. It seems like some of the kids are getting really sick from it, but I think they have higher doses of it for their body weight because of different study arms. I hope and pray that it's not too hard on Matthew, because this will be the new normal, and for a long, long time.

Here's to a good new normal!

Thursday, March 15, 2012

Declaring His Wish

Matthew was introduced to the Make-A-Wish Foundation of Utah yesterday. I blogged last week about how he got his key in the mail. He carried it everywhere with him for days. He slept with it, ate with it, and lost it at least 3 times, which launched full scale search and rescue missions in our house. He was so excited to go make his wish, he could barely stand the wait.

We asked his wonderful volunteer preschool teacher, Miss Caroline, to come along with us to take pictures. She is comfortable with Make-A-Wish, because she used to volunteer for them. Also, she has given so much to him through this dark time. We're really glad she got to be a part of it.

Can you see the love between them? It brings tears to my eyes.

When we arrived at the building, we could see Matthew's volunteer Wish Granters inside, along with one of the Make-A-Wish employees and Miss Caroline. There was a poster board in the door on a stand with balloons that welcomed him by name.

In the entryway, we learned a little bit about the history of Make-A-Wish, which began with one boy's wish to be a police officer. He got a real uniform and a badge. Make-A-Wish came to Utah when one girl wished to see the snow. For many years, the foundation was run by employees and volunteers completely out of their own homes and the homes of the Wish Kids' families. Finally, and I can't remember how long ago - maybe ten years? - they built a building in Utah, called The Wishing Place. When they built this building, they got lots of input from the children who had already made their wishes. They wanted to know what would make it magical for the kids who would make wishes in The Wishing Place. They came up with a party room with a stage, a ceiling full of stars with Wish Kids' names on them, a board game to help identify the wish, and a wishing room inside of a magical tower.

We toured the facility and saw the stars with Wish Kids' names in the ceiling of the lobby.

And pictures of some other Wish Kids, along with a short description of what their wish was. I saw a go kart, a white horse, lots of wishes to meet celebrities, and lots of trips to Disney World. (This one's a tad blurry, but I kind of like it that way, to protect the kids' indentities.)

Then we went upstairs, of course in the elevator and Matthew got to push the buttons. We played The Wishing Game.

With Matthew on steroids, we had a hard time getting him to pay attention to the game, but I think he liked it anyway. And I think everyone else did, too.

This is Matthew with one of his Wish Granters, Kris.

And both Wish Granters here, Kris on the left and Nadia on the right. You can see the Wish Kids' stars in the background.

After the game, Kris helped Matthew write down his three favorite wishes.

He chose:
1- A toy (I was SO worried he'd do this, because he doesn't understand the scope of his wish!)
2- To meet Mickey Mouse
3- To see Mickey's castle

Whew! What a relief. On steroids, it's hard to predict what could have happened! For all I know, he could have wished for a lifetime supply of bacon!

Here's Matthew and Kris writing down the wishes. I wish I could figure out how to rotate the pictures! But they're still cute.

And here, Nadia and Kris are laughing with him. Probably because he wished for a toy! Right next to his hand, you can see the copper tube he put it in - that's important later.

He rolled up the paper with the wishes written on it.

And put it in the copper tube, then twisted it shut.

Then we went to the Wishing Room in the magical tower. He got to use his key to unlock the door.

The Wishing Room is surrounded in color, and magical sounds, with a water fountain in the middle of it. Before he started, they asked us go to around and say what we each wish for Matthew. It was beautiful. We all wished him things like good health, a long life, and getting through his cancer without any scars - inside or out. I cried. I always cry.

In the center of the room was a cone without its top. It had an empty circle in the center of it.

He had to search the room for the top of the cone.

Then he fit the copper tube into it.

And fit that on top of the bigger cone.

The minute it all came together, magical sounds and music started playing all throughout the room. Kris explained to him that he had just sent his wish off to the Wish Wizard. The Wish Wizard will look at his wishes and let us know if he can grant them. Being the logical child that he is, Matthew wanted to see the Wish Wizard, and he kept looking for him the rest of the night.

Then, we went back out and took some pictures of us all together.

Then we went downstairs to have some fresh-baked cookies while Kris helped Justin and I fill out the necessary paperwork.

Since he was on steroids, Matthew's attention couldn't be held by anything for very long. Soon enough, he got bored, and started checking out the rest of the room. It didn't take him long to discover a podium with a microphone - his favorite thing in the world! When he was little, in Primary, he would ask me if he could "talk on the talkie talk," then he'd yell into the microphone and pound on the podium. He was so funny. So, with full permission to play around the podium and microphone, he put on a little show for us while we finished the paperwork. Kris helped us with the paperwork, and Nadia played with Matthew and Mikey.

Sweet Miss Caroline kept taking pictures the whole time.

It was truly a magical night, and I'm glad I found the time to write about it today while the details were fresh. They asked us what dates we wanted to go to Florida, and we chose any week in June except the first week, which will be a steroid week for Matthew.

They said that when they send kids to Disney World, they always stay in a resort within Disney World called Give Kids the World. It's a whole town dedicated to kids who are there through programs like Make-A-Wish. It's made with sick kids in mind. There are all sorts of foods available around the clock. The mayor of the town is a Rabbit, who comes and tucks the kids in at night. There's a swimming pool that looks like a beach. Each family gets their own villa with a washer and dryer and a kitchen.

They give you passes to Disney World, Sea World, and Universal Studios, and you can ride the light rail train, but they also give you a rental car.

It's a seven day, six night trip, so we'll have plenty of time to check out all three parks, and we may take a day to go to the beach.

When I think of all that Matthew has been through this year, it sometimes weighs really heavy on my heart. He's never going to be the same. He's faced his own mortality, and he understands that on some sort of a basic level. All of my kids have had this thrust into their lives, and all four of them are changed. It's an awful lot of cold, hard reality for any kid to deal with. I'm really glad that they will get to step outside of their "normal" for a week and just play, and pretend. I think it will lift each one of their spirits. Justin and me, too.

I will never be able to express how deeply touched I am by the gift the Make-A-Wish is going to give to us. I am filled with gratitude for all of the volunteers and donors who will make this trip happen for us. Now, we have something to look forward to.