Thursday, March 22, 2012
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
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
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.
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.
Wednesday, March 14, 2012
- He only has to go in once a month, unless he is having problems. He doesn't have to have his Port accessed any other time - so only one poke a month, as long as all is well.
- Only one lumbar puncture every 3 months, plus we talked to his doctor about a different method of sedation, which would put him out enough to do the procedure without using general anesthesia. It would also mean we can be in the room when they do the lumbar punctures, which I think I would like better. They also come out of it better this way.
- In the near future, we should be able to count on a relatively steady ANC of 1000 (this is still immune suppressed, but he would at least be able to fight off his own body's bacteria). This means he'll be able to go to church again, and possibly preschool or daycare. Also, we can travel this summer.
- He has to take pills every single day for the rest of treatment, which we found out yesterday will end in September of 2014. A month sooner than I thought.
- 5 days a month, he'll take steroids. This is also going to continue through all of Maintenance - until September of 2014. I know I've said before how much I hate steroids. He started them last night, and already, he's crabby and emotional. It's going to be a long week.
- On Thursdays, he'll take an additional medicine, and has to take 6 pills to get his dose. This means that on the Thursdays that are also steroid days, he will take 10 pills.
- He will only get a CBC once a month, which will make me a basket case because I'll never know his ANC. I'm going to have to learn to trust that he's okay, unless I have reason to believe that he's not. That's easier said than done when your child is being treated for cancer.
So, here are the specifics, for those of you who want details. He is on a study for his treatment. By participating in a study, you get the most current treatment available. For Matthew's study, they left almost everything alone, so the kids receive the current standard treatment plan. The exceptions are that during Induction (that was the very first 28 days), they give some extra blood and extra bone marrow for scientists to study, and then during Maintenance they took the standard treatment and tweaked it with a little bit more of each medicine and a little bit less to see if they could get a better cure rate with those little tweaks, or if they could do without some of the harsher drugs to lessen side-effects. Each child who participates in the study is randomized among four arms of treatment; A,B,C, or D. You don't know how you've randomized until the day you start Maintenance, even though you agree to it before you start treatment. You have to agree to it again before they randomize you.
So, we had some long-awaited news yesterday. Matthew randomized on Arm A for his study. Arm A is the current standard protocol. Tried and true - this is the one they know works. I feel good about it. At one point in time, I hoped he'd get one where they had tweaked the medicine to be higher doses, but I've seen some kids struggling with it. So, from a quality of life perspective, I feel better about this.
About a month ago, I couldn't handle the pressure of this upcoming stress, and I finally laid it at the Lord's feet, which I should have done months sooner. I asked Him to make sure Matthew got into the arm of the study that would be best for him, and then I let go of my worry about it. I feel like that was the right thing to do, and I feel like Arm A is really, truly where Matthew is supposed to be.
The following is copied from the paperwork they gave me yesterday: "The purpose of Maintenance phase therapy is to try to keep the Leukemia from coming back. Each Maintenance cycle will last 12 weeks (84 days) and is repeated until 2 years from the start of Interim Maintenance I for girls and 3 years from the start of Interim Maintenance I for boys."
His doctor explained to us yesterday that early in Leukemia treatment, they found that they could get rid of the cancer quickly, but without continued treatment, it would just come right back. So, each phase of treatment was developed, and has been fine tuned over many years, to prevent the return of the Leukemia cells. As I understand it, the 4 phases of treatment that Matthew has been through since he achieved remission were necessary because the bones needed to be "reset." They needed to be retrained to make good blood again. The Maintenance phase of treatment, however, is more about preventing the return of the cancer. They target what she called "sanctuary sites" to be sure there are no lingering cancer cells lying in wait. If there were cells in his spinal fluid or his testicles, he would relapse. They have found that boys often relapse because the testicles are such a strong sanctuary site, so boys are in treatment to prevent that for a year longer. Most relapses happen near the end of Maintenance, or just after the child has gone off treatment all together.
Relapse is the scariest word I know. It is totally the stuff of my nightmares.
Anyway, on Arm A, the treatment is as follows:
- His treatment will be done in "courses" of 84 days, followed by a break for count recovery. To start the next course, he will need to have at least an ANC of 750, and cannot have any current major illnesses (RSV, Flu, Chicken Pox, etc...).
- On day 1 of each course, he will have a lumbar puncture done, and they will inject Methotrexate into his spinal fluid.
- Once every four weeks, he will have a check up with his doctor, and he will receive an IV dose of Vincristine.
- For five days out of every 4 weeks, he will take Dexamethasone (a high dose of steroids). This will be done in conjunction with the Vincristine. They work best together. When he takes this drug, it will be 2 doses a day. 2.5 mg in the morning, and 2 mg at night.
- Every Monday and Tuesday, he will take Septra, morning and night. This is the antibiotic he has been taking all along, which prevents a very specific type of pneumonia often seen in immune suppressed people. He will continue taking Septra for 3 months after the end of his treatment.
- Every day, he will take Mercaptopurine, which is called 6MP for short. This is in the form of a pill, which needs to be taken on an empty stomach and without dairy products. This medicine is dosed based on Matthew's height and weight. They started him out on what they call 100% of his dose. If his ANC holds steady at 1000, he will stay on the 100% 6MP dose. If the ANC tanks (which seems to be fairly common), they will reduce his 6MP to a 50% dose until his counts recover, and then work their way back up to 100% over time, if possible. The goal is to always have an ANC of 1000. If it stays too high, he'll get more 6MP. If it stays too low, they'll have to permanently adjust it lower, although it will change over time, as his height and weight increase with age.
- Every Thursday, he will take 6 Methotrexate pills, equaling 15 mg. These could possibly cause the side-effect of mouth sores, which are far more painful than they sound. They are easily the most painful part of ALL treatment, and often kids get put onto a Morphine drip to manage the pain, and end up being fed through a tube because they won't even open their mouths. Luckily, Matthew has never had mouth sores, even with the much higher doses of Methotrexate he has received via IV. The Pharmacist told me yesterday that Septra and Methotrexate combined can build up in your system, causing side effects over time. At the time, I was thinking of skin problems, which I've seen a lot of kids go through, but I bet mouth sores are another possibility. I hope and pray that sweet Matthew never has to go through it.
So, as you can see, this course of treatment is still hard. I know I've made it sound like it's going to be this huge relief, and in many ways it will, but Matthew is still in active treatment, for sure. It will be wonderful to have fewer visits. We'll have so much more time to do the things we want and need to do. I'm looking forward to tons of time outside this summer - at the park, on play dates, taking walks. I just want to get him out of this house!
I hope we settle into this next "new normal" quickly, and get on with our lives. Once again, thank you all for the amazing support you provide. We feel lifted and carried by all the prayers.
Thursday, March 8, 2012
Matthew's first week of break was fine. You could tell the methotrexate was getting to him. It makes sense - it was the highest dose of IV methotrexate he ever received. He got a little nauseous 2 days later, which is rare for him. One blessing for us is that the chemo never really made him sick, except the doxorubicin. So, the little bit of nausea wasn't that big of a deal. He had a little bit of pain that day too. All of the above was very manageable, though.
You can also tell when the chemo wears off. He has more energy, and wants to play. He's tired of being cooped up in the house. I can't wait to get him involved in SOMETHING, whether it be play groups, pre-school, head start, or all of the above! He cried this morning because he wants to go back to school so bad. (We used to call his daycare 'school') All I could really tell him is that some sicknesses go away pretty fast, like when you have a cold, but cancer takes a really long time to fight. Poor kid.
He's starting to understand the depth of it. He asks about death more than I know what to do with. I need to facilitate a conversation with him and Rachelle, the child life expert at the clinic, about it. She always finds amazing ways to help him deal with the emotional struggles he's facing. It breaks my heart that I have to teach my four year old about death because he understands that he is facing his own mortality. I've been a mother for 17 years, and this is totally uncharted territory.
Tuesday, things got particularly rough. He has had low-grade fevers pretty much every day for about a month, now. Ranging from 99.5 up to 100.5. As long as they stay below 101, and they don't stay above 100.4 for more than an hour, we aren't supposed to worry about them. That's easier said than done, though. It reminds me too much of the month before he was diagnosed. I brings scary thoughts about what's happening right now to mind. But they check his blood every week, and his doctor said the fevers are now, and probably also were then, just an indication that his body is working hard.
Well, Tuesday, his fevers stayed above 100 more often than not, but never went high enough for long enough to take him in. He also started sneezing quite a bit, and had a runny nose, but it was clear, which still means no infection. We were sort of on alert, but still didn't need to take him in. Wednesday morning at about 2am, Matthew came to the bottom of the stairs with a croupy cough.
I've dealt with croup with every, single one of my children. Many times. I've only been scared by it once before, and that was the first time Alaina had it. The sound of that cough can be scary. But with Matthew, it wasn't the sound of the cough that scared me, it was the way he was breathing in-between coughs. He couldn't draw a full breath. He was struggling to breathe at all. He looked pale, and terrified. It scared me. A lot.
Thankfully, my husband is amazing, and keeps his head during an emergency. He took Matthew into a steamy bathroom while I called the on call oncologist. She said to take him to the ER. Then a couple of minutes later, she called back to say that, based on his current good counts, if we could get the breathing under control, we could wait till morning. But, after 10 minutes or so in the steamy bathroom, he was still having a hard time, so we got dressed and went to PCMC. It was an icy snowstorm out there, and awful to drive in. Once again, I thank heavens for my amazing husband, who can drive fairly fast safely in the snow and ice.
Going out into the cold air also helped improve Matthew's breathing, but still not enough. By the time we got to PCMC, he was no longer struggling, but was still breathing fast and wheezing.
They confirmed that he has croup, and explained that it causes the windpipe to swell. In an adult, that wouldn't be such a big deal, because our windpipe is proportionately larger than a child's, but young children can struggle to breathe when they have croup. So, they gave him steroids to decrease the swelling. And we all know how much we love steroids in this house.
I have to say, though, never before have I seen so quickly what a miracle drug they are. It was the same exact drug he gets in his cancer treatment, Dexamethasone. Also a similar dose. And it resolved the situation almost immediately. They prescribed a second dose for the next night. He has had no more croupy cough and no more breathing issues. Just a dry cough during the day.
Thank heavens for modern medicine. And even though I loathe to say it, thank heavens for steroids.
I thought for sure, he was going to be admitted to the hospital. I was so relieved when they sent us home.
The most interesting thing about this ER visit was the doctor. I knew that I recognized him, but I couldn't place him. You could tell he was also trying to place us. Justin is the one who knew - and I think he knew from the beginning. This is the doctor who saw Matthew in the same early morning hours on July 12, 2011. Matthew had been sick with an infection in a salivary gland in his cheek and had swollen lymph nodes down his neck for a month with an accompanying fever. This doctor was the first person to tell us he thought our son had Leukemia. He drew us a picture of a bone on a paper towel, and explained what the different types of blood do, and why it was such a problem that Matthew had no neutrophils. He admitted Matthew to the ICS for further testing based on the fact that he had an ANC of 0.
What a weird, full circle moment to happen during the week before Matthew was to begin Maintenance.
He was really nice, as he was the first time. He was glad Matthew was doing well. It was good to tell him he was right, because Matthew didn't present like a normal Leukemia patient, and this doctor took a chance and went with his gut to find us an answer. I have always been grateful for him.
After we went home, it took us a full day to catch up on the missed sleep. Then another day for Matthew to get over the emotional side-effects of the steroids. But now, all that's left is some dry coughing during the day. Certainly not the disaster it felt like in the middle of the night on Wednesday morning.
Monday's lab results:
White Blood Count: 2.7
ANC: 1290 (They went UP from last week - and we fully expected him to be neutropenic for a few weeks!)
He's such a rock star.