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Sunday, July 31, 2011

Routine

It seems we have settled into a bit of a routine. Mornings are the most intense part of the day. We have our food marathon from 6 am until 9 or 10 am. Then Matthew typically goes into food coma mode, and takes a short nap - maybe an hour or so. I usually nap with him, because 6 am is really early for me, and I haven't adjusted to it. Plus, I'm usually exhausted from preparing him so much food! My nap usually lasts longer than his, and I'm thankful that my other kids are not in school right now, so they're able to help.

Then, the rest of the day, Matthew mostly snacks. It's just a lot of snacks. If it was up to him, he'd lay down and watch Spongebob all day, but I try and get him to expand his horizons a little. I encourage him to choose other things to watch (I know major expanding, right?) and I try and get him to do little crafts with me. I have to sit near him, and just start doing a craft, and talking to him about it. Sometimes, he'll join in and help me, and sometimes he won't. When he does, it gets a big smile on his face, though. I usually sit down a couple of times a day and just start reading him a book. Sometimes he asks me to stop, and sometimes, he gains interest and pays attention. I can never get him to choose a book ahead of time, though. Usually, I also sit near him, and just start coloring in a coloring book, and of course talking to him about it. Sometimes, he'll join in, or just tell me what things to color, and what color to use.

The most exciting event of his day is usually the popcorn maker. We have a movie-theater style popcorn maker - of course, it's miniature, but it still makes a good bucket of popcorn. He wants popcorn every day, and he likes to participate in making it. He likes to put the butter in, and the popcorn kernels. When it's getting ready to pop, we sing "Popcorn Popping on the Apricot Tree." He always gets really into it, and smiles a lot. Then he gets excited when the popcorn starts popping. Then, he takes his popcorn and goes back to the couch to lay down.

I talked to the doctor about how lethargic he is, and the doctor said that's normal right now. He is anemic, but not enough for a blood transfusion.

Most days, Matthew doesn't take any more of a nap than the early, short one after breakfast. Sometimes he'll take another one in the afternoon, but usually not. When he's ready for a change in scenery, he moves to another TV. Maybe he'll go to the office, and maybe he'll go to my bedroom. Usually if he goes to my bedroom, it's because he's tired, but doesn't want to sleep quite yet. When he's ready for sleep, he tells me. Then he closes his eyes and sleeps.

He initiates bedtime every night. It seems to be getting a little bit earlier every day. I'm looking forward to the end of induction because I think he'll at least get some energy back, and the hunger from the steroids will stop plaguing him.

The thing that's interesting is that now that we've developed more of a routine, things are less difficult. I think no matter what your lifestyle is, routine is one of the most important things.

People keep telling me that they read this blog, and it breaks their hearts, or they cry. I can see why, but I want you all to know that there have been some amazing and beautiful things that have happened, too.

The Lord has promised He won't give us more trials than we can handle, and when our load gets too heavy, He'll carry it for us. I bear witness to that. I have seen the Atonement work for me in the past when I've realized that my sins from the past had been forgiven. It was beautiful. Now, I'm learning something new about the Atonement. In Gethsemane, Christ suffered all of our pain. Not just the pain from our sins, but all of it. He understands what my son is going through better than I do. He also understands what I'm going through. When this has become too heavy for me, He has lifted my burden. All I have had to do is invite Him in. In the hospital, when it became too much for Matthew to bear, Justin gave him a blessing and the Lord lifted his burden, too. He slept for the rest of the hospital stay. Sometimes, we're pushed right to the edge of what we can bear, and those times make us stronger, but it's important to remember that we're never alone. He is right there, watching, and waiting for us to need him like a parent teaching their child to ride a bike for the first time. We know they may fall and scrape their knees, and we try to prevent that from happening, but if it does, they'll learn something from it and hopefully get back on the bike.

Maybe this cancer is the Lord's way of taking off our training wheels. If Matthew is being made that strong at 3, think of how strong he'll be when he's my age!

Saturday, July 30, 2011

Child Life

Something I promised to return to was Child Life. It's a program at the hospital that I think makes Primary Children's unique - at least compared to my other hospital experiences.

The Child Life specialists are sort of like counselors for children that are too young to talk to a counselor. But it's more than that. They help kids of all ages, and the families. I wish I could accurately describe it. They offer play therapy, where they teach the kids about what's happening to them through play, or help them deal with a particular struggle they're facing through play, or just convince the kids to play.

Karen was the Child Life specialist the week we were in the ICS. She was filling in, and I don't know where she usually works, but I was so grateful she was there! She became Matthew's best friend. She would come and see us every day, and she was the only person he would sit up and play with. At first, it took some coaxing, but towards the end of the week, he would sit up as soon as he saw her, and his face would light up. His reaction to everyone else was totally different. For anyone else employed by the hospital, he would scowl, and sometimes yell, whine, or cry. For family members, he might squeak an answer if spoken to, but half the time, he would still scowl. For Justin and I, he would squeak an answer, and sometimes cuddle, but he didn't really want to play. He also tried often to comfort us, which is so sad, because he was going through a lot. But when Karen would come in, he would play. It was amazing.

The first day, all she did was blow bubbles with him. He was so happy that he was allowed to blow bubbles inside that he eventually sat up and played with her. The next day when she came back, she brought a few toys. She let him bonk her on the head with them, and then they threw stuff on the floor. It was pretty aggressive play, and he was the one leading. It worried me a little. She explained to me the next day that it's actually a really healthy way for him to deal with his strong emotions. She said the toys where you hammer pegs into wood, or bop the animals, or things along those lines can be very therapeutic for a child going through something so difficult.

We talked with her when the anesthesia experience was so awful the first time he went under, and she coached us on how to talk to the anesthesiologist the next day, which made it so much easier. She also went downstairs with us, and played with Matthew all the way there, making him so much more comfortable. I always felt like we were her most important assignment. But somehow, I know she made everyone else feel that way, too.

Another thing she did that was really cool was the "hospital buddy." It's a very plain doll made out of fabric, with no face or anything. And she has markers, so the kids can draw a face on it. She also has hospital gowns that fit the doll, and the kids get to choose the pattern. The first day she brought it in, she helped Matthew color a face on it, and food going down his throat into his tummy, and they talked about the food having a party in his tummy. They drew all over the doll, including an eye patch, which he put there when he decided the doll's name is Pirate. It's the first time anyone's ever gotten him to name an animal or toy of any kind. He's always so matter-of-fact, and I was impressed that she got him to do it. Pirate is now one of his favorite toys.

The second day with Pirate, she brought in bandaids, and Matthew tended to Pirate's owies. He got like 10 bandaids. Then they put a bandage on Pirate's chest where Matthew's port had just been placed. Then, they put an IV in Pirate, gave him medicine, and took his vital signs. Pirate's job was to hold still, and my job was to hold Pirate's hand, and Matthew's job was to give Pirate his medicine.

It helped Matthew to understand and cooperate a lot better when the medical staff needed to check him out. Often, he would hold Pirate while they would take his vitals. He learned to ask the nurses to let him listen to their hearts with the stethoscope. He would listen to their hearts and breathing, and then they would listen to his, and he got through it a lot better because he wasn't so scared.

Each unit in the hospital has their own Child Life specialist. The one in the Rapid Treatment Unit (RTU) helps the kids choose a smell for their oxygen mask. She shows them pictures of the operating room. When we had left the hospital, and been home for a few days, then came back for chemo, he had to go to the RTU for a spinal tap. He was scared, because he didn't understand that we didn't have to stay. He wanted to go home. She came in and played with him with a Mister Potato Head, and he felt better.

When we went to the Oncology Clinic (also in the hospital, but a separate unit), the Child Life specialist there heard him crying, and materialized out of nowhere. She is really great with him. She shows him a book or a toy, and talks him through the scary times until he feels better. He has been to the clinic twice now, and both times, as soon as she heard crying, she was right there to help. She played trains just for him to watch while they accessed his port (which is the only needle stick he has to have at his appointments). She read to him, and played trucks for him to watch, and even held the iPhone so I could hold his hand and he could keep watching Spongebob while they removed the needle at the end. She seems to know by instinct how close Matthew will accept her being. Sometimes, she can be close, but sometimes, he needs to watch her play from across the room. She has spent time at each visit trying to understand his likes and dislikes so that she'll have the very most appropriate toys and books ready for him when he comes next time. She's very good at what she does.

I think I've said this before, but I don't think I could say it enough: It amazes me how the people who work in this group (not just Child Life, but all the oncology people - nurses, doctors, the IV team, you name it.) can do what they do, day in and day out. They see so many suffering children. So many suffering families. They find ways to help that you would never expect. They make it as smooth and seamless as possible. They take care of their patients' mental needs right along with their physical needs. They make it so that cancer isn't nearly as scary as it could be. I don't know how they can motivate themselves to keep doing it. They must be drained at the end of the day. They work in such a stressful environment. I have such respect for them, and I thank heavens that they can find it in their hearts to take care of us.

Friday, July 29, 2011

Bandaid Goo

You know that goo that bandaids leave behind when you take them off? The sticky gray line that you can scrub over and over, and it seems to take days for it to wash off? I swear I'll never get Matthew all the way clean again because of all the bandaid goo.

He still has steri-strips from his surgery 15 days ago (wow has it already been that long?) and they look gross, but at our appointment yesterday the nurse said she'd ask the doctor about them, and the doctor didn't say anything about it, and I forgot. So, I'm not sure if I can take them off or not. They don't look very steri anymore, though.

Then he's got those gooey gray lines in all these weird places around his body. On his back where they did the Lumbar Puncture. Every time I get rid of that one, they do another Lumbar Puncture, creating a new gooey gray line. He has a few on his chest around his port, and one on each wrist (although I think they may be officially gone now).

But I keep finding them. Poor Matthew is sick of me scrubbing him. Yesterday's bath was traumatic for him. He cried the whole time. I guess I just need to be patient and wait for the gooey lines to disappear over time.

On a different note, lots of people asked me how Chemo went yesterday. It really wasn't too bad. He only had to have Vincristine, which takes 2 minutes, so we didn't have to go out to the armchairs where they usually administer Chemo. We just stayed in the exam room. We met a new doctor, who is very young, but super smart and nice. He can't possibly even be 30, which is wild, since oncology is quite an intense specialty. Maybe he was one of those genius kids who graduated high school at like 14, and went straight to college.

Matthew continues to gain weight. He gained 4 lbs last week, which is more than 10% of his body weight. He looks very pudgy. It's kinda cute, but sad at the same time. The extra weight, combined with the muscle weakness is making it hard for him to go up the stairs without help. The doctor yesterday said he had a patient once who had to be moved around in a stroller for the last week of steroids. But he says it isn't long term at all. This is the longest stretch of steroids we'll have to do, and the side effects will mostly be gone within a couple of weeks of getting off of them.

Good thing, because I can only handle so many more marathon breakfasts! Today's menu was 2 eggs and 4 pieces of buttered toast, a bowl of popcorn, half a bowl of cereal, and he's asking me to come and make him something else now -- probably pizza. It's currently 9:15 am.

Thursday, July 28, 2011

Breakfast

Breakfast is the most important meal of the day. Especially if you're 3 years old and taking a strong dose of steroids.

Today's breakfast has been 4 chicken nuggets, a piece and a half of french toast, a hot dog - cut up into small pieces, a piece of bread and now he is asking for Ramen noodles. Holy cow! It's only 7:15 am!

He wakes up at 6:00 am on the dot, hungry. He manages to sleep through the night, but by 6 if I suggest that he lays with me for a minute, it's like an act of war. He wants breakfast!

Today's a chemo day, so I don't know if I'll find the time for a regular blog entry. Please keep us in your thoughts and prayers. Chemo days can be rough.

Wednesday, July 27, 2011

Changes

It's amazing how fast cancer can change a child.

Matthew's type of cancer is Acute Lymphoblastic Leukemia. The word Acute refers to how quickly the cancer takes over. It's a fast moving cancer.

Today, I'm reflecting on the rapid changes my poor boy has gone through in the last few months. I have gathered some pictures that really show it all.

If you go back to my first blog entry, you'll find the story of the first month. It all started with the bumps on his cheek and neck.



The ones on the bottom show up more, but up at the top, if you look closely, you'll see the bigger one, by his ear. This was June 12th, at about 1pm.






Later that day, it had grown considerably larger. Also, in front of his ear on his cheek, you can see another bump. That one was much more difficult to get a good image of, for some reason. Believe it or not, it was bigger than the one on his neck. This was at about midnight, the morning of June 13th. (basically the same day.)














By the time we went to the emergency room, he was in a lot of pain. The one on his face started looking bruised. This was at about 2am, still on June 13th.










This is the same day - at the same time as the first picture, when the bumps were still relatively small. See how happy he still is? How pink his skin still looks? How chubby his cheeks are?

This day was a turning point. Before this, I had noticed that Matthew was catching everything he was exposed to way too easily, but I still considered him a completely healthy kid. I thought he was getting sick so often because he went to daycare, and kids catch more stuff at daycare.










This is a picture of him sleeping a couple of days before we went to the Primary Children's emergency room.


See how pale he is? How thin his cheeks and lips look? His skin looks grayish to me. By this time, I was beginning to feel desperate for someone to tell me what was wrong with my child.











Following are a few pictures of Matthew during the first few days after we came home. You can see the blood transfusion did him some real good.

He stacked those cups up higher than his head. See how slim his face is here? How skinny his arms are? You can start to see his belly looking chubby.

The first few days he was home, he kept saying he wanted a Spongbob birthday cake, so Grandma Toni made him one. His whole face lit up. The other kids were gone, so Justin, Toni, and I sang him Happy Birthday. It wasn't really his birthday, but no one cared!

See how pink his cheeks are? See how they're starting to get a little bit chubby again?



Now, here's a picture of him from this morning. He was mad that I made him put on some shorts and refused to smile for the picture. He thinks everything's better without pants.

We've had to go up a T-Shirt size, because his belly is so big from the steroids and constant eating. See how chubby his cheeks are? Also from the steroids. He's retaining a lot of water, and the nurse told me I should avoid giving him foods with sodium, but that's the only thing in the whole wide world he wants. He wants pizza and bread sticks (that's the biggest craving - especially bread sticks with the huge pieces of salt on them), and he wants hot dogs, and chicken nuggets, and chips. I can, however, talk him into eating Cheerios in milk. Oh, and he drinks a TON of milk! He's going through a gallon every 2-3 days.

The steroids also make him very grouchy. That's why I finally gave up on getting a smile for that picture - it was never going to happy unless I let him take off the shorts first. And I didn't particularly want to post a picture of him in his undies online.

I can't wait for the steroids to end! Today is day 14, and he has to take them until day 28.

I do hear from other moms, though, that later I'll be really happy he put on some extra weight now. I guess that means later we'll be going back to trying to convince him to eat again.

What a roller-coaster!

He still has his hair, though!

Tuesday, July 26, 2011

Support

I don't even know where to begin on this topic. We have so much support, and it comes from every single direction we look.

When we got Matthew's diagnosis, we spent a lot of time on the phone. I felt like we were spending more time talking to people about Matthew than we were spending with Matthew. So, we started looking at other ways to get the word out. You can't possibly call every person that would want to know. And everyone wants details, which you get really good at reciting. Finally, we decided that we better put something on Facebook. Together, we devised a basic message, and put something similar on each of our walls. Then, the support exploded. Friends started prayer chains, and people who don't pray were still thinking of us, and "sending good thoughts out to the universe" for us. It's amazing how people of such diverse belief systems and backgrounds, in so many places all around the world can come together for one child. People we didn't even know were rooting for us.

We had constant visitors at the hospital (which was a really super good thing, because whenever people weren't there, I would start to lose it). My husband's bosses came, and people from the daycare, and family like crazy. Everyone brought presents and food.

While we were at the hospital, people were feeding the rest of our kids, and dropping in to tell them hi so they didn't feel alone. People took them out to lunch, and to movies to keep them occupied. Family came and scrubbed our house from top to bottom, making sure all the surfaces were sanitized so that it would be safe for Matthew to come home. They did all of our laundry, and I was WAY behind on it! They took it home with them to work on it.

Word spread fast among our ward family. People were praying for him constantly - they still are. I have never felt the power of prayer like I did in the hospital, and it's something that will stay with me for the rest of my life. My ward fasted for us. We had an old friend drop in on us, and he is not a religious person at all, but when we explained about the sacrifice of fasting, and how it makes you stronger in spirit, he said he'd go the rest of the day without food too, for Matthew.

I met another mom in the laundry room at the hospital, and she was amazed that I wasn't a huge mess. Haha! I was just in shock, I think, because I really lost it later, after we went home. This mom was a member of a support group on Facebook. There are 100 members right now. It's been incredibly important to help me get through this, because I have 99 other moms who are going through, or have been through the same thing as us. They are a wealth of knowledge and have these amazing, huge hearts.

We joined Hope Kids, which is an organization that does special family outings for really cool events to give the kids something to look forward to - so they'll have hope and fight harder. There are a lot of other organizations out there with similar purposes, and I'm in the process of finding as many as possible to sign up for them. I can see that it will give my whole family something to keep us strong together.

What really amazes me is that we asked for almost none of these things. People just creatively found ways to help us. What's more, there's no possible way we would be getting through this without so much support. We would be in a living hell, but instead, we're inspired and strengthened, and we're getting through it one day at a time.

Thank you. Everyone. Thank you for all the creative ways you have found to help us. Thank you for the thoughts and prayers. Thank you for the support.

Thank you for loving my little boy!

Monday, July 25, 2011

Steroids

It's pretty crazy when your 3 year old goes from eating next to nothing, to waking up in the night because he's hungry. At first, I thought it was going to be helpful that he was so hungry from the steroids, because that sure helped me to reach the goal of 1500 calories a day, but it has suddenly become a monster - completely out of control.

Yesterday, I felt like short order cook. I made him a lot of eggs. I'm supposed to be giving him low sodium foods, which is difficult because that's what he's craving. He wants hot dogs, but I can talk him into eggs instead. He has absolutely no desire for anything sweet, so even bananas are out of the picture. Bananas are probably his favorite food. All the snacking would be so much easier if I could give him fruit!

I did go buy some string cheese, granola bars, and graham crackers. We'll see if any of that is of interest to him. Cross your fingers for us!

Last night, Matthew woke up twice to eat. The second time was 4:30 am, and he was ready to be up for the day. I had had 3 very interrupted hours of sleep. He finally consented to go back to bed at 5:45 or so, but it took me a while to get back to sleep, and then he was up again at 8:30. It reminds me of having a newborn. You have to sleep when the baby sleeps.

Speaking of... he's asleep now, so I suppose I should go take a nap.

Sunday, July 24, 2011

Details

This morning, I realize I haven't answered the question that's always first on everybody's mind: What are his chances?

Leukemia means kids die, right? That was my first thought when they said Leukemia - this is one of the really bad cancers. I remember watching movies on Lifetime and the like about kids who suffered from Leukemia, and it made it seem awfully scary.

I won't necessarily share the exact details, but I've always known what kind of a man Matthew will be. I know, without a shadow of a doubt. So, even when they said the word Leukemia, I didn't think he was going to die, but I did envision this lifelong battle with the disease. Not everyone had that to comfort them, though. Justin, the kids, and all the grandparents were more worried about death, I think.

It took them until Thursday to get all the details of his diagnosis. We knew it was Leukemia, but we didn't have all the classifications. We didn't even know it was ALL, and other Leukemias are much more dangerous. I said in an earlier post that if you had to have Leukemia, you'd choose Matthew's kind. It's true.

We've struggled to nail it down to a specific number, but his chances of a complete cure are somewhere between 85 - 95%. Our doctor says 85 - 90, but we've heard other doctors and nurses say 93, 94, and even 95.

So, what we can basically expect is that after the 3 years and 3 months of treatment (which is set in stone, unless there are delays - but they said there are almost always delays) he will most likely never experience another symptom again. In fact, he should be in remission very quickly - at the end of induction, which is August 5th. The rest of it is about resetting the bone marrow to make healthy white blood cells.

Which leads me to my next topic of discussion: What exactly is Leukemia?

Everyone knows it's cancer of the blood, right? But what does it do that makes you sick?

Well, Leukemia cells are actually white blood cells. They're just mutated enough to cause a real problem. Normal white blood cells are born in the marrow, go out into the bloodstream where they mature and do their work, and then they die and are disposed of through the body's waste. Leukemia cells are a problem because they don't die. Our doctor told us that in the very beginning of the disease, they can actually still help to fight infections. From what I gather, though, they never die, so they stop doing any good. What's more, they then crowd up your system, making it so that you cannot make new, good blood cells to do what you need them to do.

All of this fits in with Matthew's symptoms that first month. In fact, the reason that the lumps on his cheek and neck went down, but didn't go away, is because the Leukemia cells were likely being stored there, and had nowhere else to go. With chemo, the lumps have mostly disappeared already.

So, the last topic of discussion is his medication and the side effects. Everyone wants to know about that, I know. Right now, I really only have detailed information about induction, because that's the phase we're in. Today is day 11 of induction, which is 28 days long. During induction, he will have chemo every Thursday. On day 1, he had the chemo in his spinal fluid (and I can't remember the name of that drug), and he also had Vincristine, which is administered out of a very large syringe, but only takes 2 minutes to do. It goes in through his IV. On day 3, he had a dose of Peg-Asparaginase, which took 2 hours to administer. They take a bag of liquid, which looks like the regular saline you would normally get through an IV, and they infuse it with your saline drip. Then on day 8, he had the spinal chemo again, and Vincristine again. On days 15 and 22, he will get more Vincristine. And on day 29, He'll have more Vincristine, and they'll do another spinal tap and bone marrow aspirate, or biopsy, or maybe both.

I don't know if it gets more or less intense after induction, but I know it stays pretty regular for another 6-9 months, and I'm pretty sure they'll be switching up the medications.

Right now, he's also on a really strong dose of steroids every day, along with something strong for heartburn, because the steroids cause that in a serious way. And on Mondays and Tuesdays, he has to take an antibiotic to prevent a specific type of pneumonia that immuno-compromised people are susceptible to. Also, pain medicine.

All together, it sounds really overwhelming, but it's still a lot less chemo than I expected. Mostly Vincristine, which our doctor said is probably one of the mildest chemo medicines - not that any chemo is mild, but this is less harsh, I guess you could say.

He has not thrown up, hasn't even had any nausea that I'm aware of. He will lose his hair soon. There is a very rare chance that he won't, but I'm not expecting that. He does have some bone pain, which is to be expected, because the chemo is killing his bone marrow, plus steroids can cause that same kind of pain. But the pain is easily managed so far. The steroids make him really hungry, which in my book is a good thing because he had lost so much weight before, and I could use some help getting it back on him. But that makes the days when he has to fast for anesthesia very difficult. It feels unbelievably cruel to give such a tiny child medicine that makes him ravenous with hunger, and then make him fast. The rest of the anesthesia procedures we have scheduled are at 11am, though, which we can survive. Last time, it was 2:30 in the afternoon, and that was incredibly awful. His belly is big and hard, like he's pregnant. At first, I thought it was because he was eating so much after so long of hardly eating anything, but I called the hospital, and they said it's a side effect of the steroids. His face will get really round, too.

I honestly think the side effects of the steroids are worse than those of the chemo. I can't wait for the end of induction because he gets to go off the steroids.

While I wrote this, Matthew ate two big bowls of popcorn, two scrambled eggs, and 2 and about 1/3 pieces of buttered toast. Now his belly hurts. Poor kid.

Saturday, July 23, 2011

In the Hospital

The next piece of this story is, of course, our stay at the hospital. Primary Children's Medical Center, it's called. It's one of the most respected children's hospitals in the world. Thank heavens we live so close!! I heard stories of people coming from surrounding states, and even selling everything they could so they could come live in little apartments nearby.

I wish we had gone to Primary's the first time he got sick. Maybe he wouldn't have had to endure so much during that first month. In retrospect, I know that if I ever have a reason to take a child to the emergency room again, it will be at Primary's. I highly recommend it to all you other parents. Not that the other hospitals here in Salt Lake are bad. Mostly, they are pretty good. But at Primary's, everyone is a pediatrician. They're used to caring for children. Plus, the equipment there is for children. Fewer wheelchairs, more wagons. The blood pressure cuffs are tiny. The blood/ox thingy they put on the finger is not a clamp, but instead, it's held on with that non-sticky medical tape. Made for wiggly little fingers. They have Child-Life specialists there, whose job it is to help the kids cope. They do play-therapy to help them understand and accept the things that are happening to them. I'll talk more about that later, because it made our experience livable. It was a really big deal.

But, let's back up to the beginning. My previous entry talks about what got us to go to the ER at Primary's. Matthew had been having fevers, and was on his 31st day with a fever. It finally went above 102 again, so we went to the ER at 3:30 am on July 12th. In the ER, the doctor said there's something serious about a fever that goes on for longer than a week, and asked us if he could test Matthew's blood. He checked the blood and suspected Leukemia.

Leukemia.

It's amazing how much one word can change your life.

Love.
College.
Marriage.
Children.

Cancer.

In the beginning, it's so devastating, and they don't want to overwhelm you, so they start slow. The Dr. in the ER drew us a diagram on a paper towel, which we saved. It's a picture of a bone, showing the different types of blood that your bone marrow makes.

There are:
  1. Platelets. These are responsible for the clotting so you don't bleed to death if you get a cut.
  2. Red Blood Cells. These carry the oxygen to the rest of your body, and give you energy. Low red blood cells create a condition called anemia, which most of you are probably familiar with.
  3. White Blood Cells. There are five (or six?) types of white blood cells. The only ones I've really learned much about are Neutrophils. They are the white blood cells that are responsible for fighting off infection. When you have an infected cut, and you see pus around it, that is made up of white blood cells, which are fighting the infection.
Matthew's blood test showed that he had a good platelet count. Well within the normal range. This is not typical for Leukemia, so the Dr. didn't feel confident making a diagnosis. Matthew had a very low red blood cell count, so he was anemic, but it was not quite low enough for a transfusion. This explains why he was so tired for weeks before this hospital visit. Matthew also had a very low white blood cell count, which is what led the Dr. to believe that Leukemia was a possibility. He said even if it wasn't Leukemia, because of the lack of white blood cells, Matthew had no ability to fight off infections (which is why the infected salivary gland never completely healed) and so he wanted to admit him to the hospital, while they worked toward a diagnosis. Furthermore, they would be admitting Matthew to the ICS (Immuno-compromised) unit, which is filled mostly with cancer patients, but he assured us that they didn't have an absolute answer about Matthew. He did, however, feel like there was around a 90% chance that it was Leukemia.

So, we had arrived at the ER at 3:30 am, and at approximately 9am, they checked us into the ICS. The room that Matthew wouldn't leave for 6 days, except for surgical procedures.

That day is sort of a blur, because it was so stressful, as I'm sure you can imagine. I couldn't cry much. I think I was in shock. But I felt like a broken mother, because what kind of mother doesn't cry when they say her tiny son might have cancer? Justin probably doesn't want me to share his reaction (I'll let him do that if he'd like to) but let's just say it was much more normal than mine. I still feel a little strange that I don't often get emotional over it. The problem is that when I do, I totally lose it. For hours. Then I have to take a pill (which I have never had to do before, and I hate it!) to get myself back under control. Matthew doesn't like it when we lose it. He tries to make us feel better. That is SO not his job right now!

At one point, he saw me crying and asked me if a kiss would make me feel better. That same day, he saw Justin crying and said he doesn't have to cry anymore. Then he told him, "If you don't cry, I won't cry either, Dad."

He's such a trooper!

So - there we were on Tuesday morning, distressed and in shock. They drew SO much blood from him on Tuesday. They just kept coming back for more. I was so frustrated because they had already told me he didn't have enough of it, but they just kept taking it. I knew it was necessary, but it's hard to be logical at a time like that.

The cancer doctor came and told us she had looked at Matthew's blood under a microscope, and couldn't find any Leukemia cells. She also felt that there were some viral infections that could possibly be the cause. Some very serious viruses can create some of the same symptoms as Leukemia, and since he had a good platelet count, and she didn't find any Leukemia cells under the microscope, there was a good chance of that. She said 50/50. She said we'd have some of the answers by the next day. She also scheduled a bone marrow aspirate (where they take fluid from the bone marrow) and a bone marrow biopsy (where they take a solid piece) for the next day. She said they probably wouldn't need the biopsy, but sometimes they do. She said they'd cancel this procedure if we had an answer from one of the blood tests before then.

On Wednesday, we got the results of 2 of the 5 viruses they were checking for. The tests were negative, thus increasing the chances that it was Leukemia.

So, we went downstairs to the RTU (Rapid Treatment Unit) where they do small procedures that require anesthesia, but it's not the same as surgery. A Child/Life Specialist came to talk to him, but we didn't really get what she was doing. She showed him pictures of what was going to happen to him, and tried to help him choose a smell for his oxygen mask, but he didn't want to talk to her. Then we went down a hallway and into a huge room with a bed in the middle. There was a donut shaped pillow on the bed, and they had us lay him on the pillow. He flipped out! He was really scared. Then the anesthesiologist started to put the medicine in his IV, which stings, and Matthew really flipped out - worse than I've ever seen him. He was flailing, and you could see the look of terror on his face. The anesthesiologist quickly put the rest of the medicine in the IV, and then put the mask over his face, which scared him more. Then he was out.

It was the worst experience of my life. I'm pretty sure it was Justin's and Matthew's too. That's saying a lot, considering the events of this last week!

Justin and I went back to the room to wait, and we sobbed. The nurses tried to comfort me, and I could not be consoled. We had this one nurse - his name is Irish - and he was with us. He cried with us, and hugged Justin. It was the sweetest thing I have maybe ever seen. He sees this every day. I think it must be the most exhausting job. At the end of the week, he told me he gets much more than he gives in his job. I couldn't do it. Thank heavens some people can!

When Matthew came to, he was still freaking out. In fact, he continued to freak out for 2 more hours. When we finally settled him down, we vowed to never let him go under anesthesia in that manner again.

It took until afternoon to get the preliminary results of the bone marrow aspiration (they got what they needed from that, so they didn't need the biopsy). This is when the Dr. was finally able to confirm Leukemia. I never even heard more about the results of the other tests they had going on.

The Dr. wanted him to have surgery the next day to put in a Port-O-Cath. This is a catheter that is installed in his chest to make IV's easier and more effective. His is under his skin. It's like a silicone drum that has a tube coming out of it. That tube goes into one of his main arteries, so the medicine they put into the catheter will go straight to his heart, and be very effectively distributed to the rest of his body. He will have that until he's done with treatment, in 3 years.

She also wanted to do a spinal tap the next day. She would draw out some of Matthew's spinal fluid to see if there were Leukemia cells in it (this would mean the Leukemia had breached the barriers and affected his brain - unusual, but needs to be treated separately.) She also wanted to administer Chemotherapy right into his spinal fluid - whether or not they found cancer cells there - because it prevents it from becoming a problem.

Chemotherapy. Wow. After one day. That was overwhelming. But these world-class doctors know best, so we braced ourselves for surgery. I immediately started telling anyone who would listen about how awful it had been for Matthew and us when he went under on Wednesday. In the end, it was Child/Life who helped us the most with that. Her name was Karen, and she was Matthew's best friend in the hospital. She coached me on how to talk to the anesthesiologist. She worked it out so that they would take Matthew's whole bed down to surgery, and I would sit up on the bed with him while we traveled. She walked with us and played with him all the way there. When we arrived at the surgery check in desk, she stayed with us while we talked to the anesthesiologist. I explained to him what had happened the day before, and asked him to give the medicine before we got to the operating room.

He gave a little medicine at the desk, making Matthew sleepy, and then we went down the hall. He gave more medicine just outside the OR doors, and that made Matthew really sleepy. Then he said I had to get off the bed, so I did, but Matthew started to get scared, so Justin picked him up and laid him on his shoulder. Then the anesthesiologist gave the rest of the medicine and Matthew was almost completely asleep. Justin laid him back on the bed and they wheeled him away.

They did both the Port (catheter) and the spinal tap at the same time. It took a little over an hour. It was a long wait. But it all went well, and Matthew woke up happy. There was no cancer in his spinal fluid.

They administered the other chemo that afternoon. This is the same medicine he gets now every Thursday. Believe it or not, the chemo doesn't have as many crazy side effects as you would think. In fact the only side effects I've seen on Matthew come from the steroids they have him on. Except the bone pain - that's from the chemo. But there's no vomiting or nausea. Not like they make it look in the movies. I think some chemo can do that, but Matthew's doesn't. Thank heavens! He will lose his hair though - and soon. The doctor said she had a patient once that didn't lose her hair. But she was Hispanic, and they have much heartier hair. It is highly unlikely that Matthew will keep his, and that's okay with me.

It's funny the things you think are important before something like this, and how much that changes. When we first got to the hospital, I saw a little kid with no hair, and it was really upsetting to me. But now, I'm so much more worried about everything else. Losing his hair won't hurt him, or make him sick. So, I don't care. Justin thinks I will feel different when I see it starting to happen. Maybe he's right. We'll find out soon enough. I've seen quite a few eyelashes on his face, so I know it's starting. So far, it doesn't matter to me. I just want my baby to feel better.

Thursday night, Justin (and everyone else that saw me that day, cause I was such a mess) convinced me that I couldn't sleep at the hospital that night. See, I may be broken because I didn't cry a lot, but I felt like if I left my baby's side, I would suddenly lose my tenuous hold on my sanity. But I knew that I needed some sleep and a shower, and I needed clean clothes.

So, I went home. I was delirious. I had been trying so hard to also make sure the other kids don't feel like we forgot about them, so I was looking forward to the opportunity to talk with each of them. I was able to talk with my girls, and at first it was really good. Allison had a lot of questions, and it seemed to make her feel better to have some answers. After about an hour, I was babbling. I'm not even sure my words were making sense. I'm also pretty sure I was pausing a lot to avoid falling asleep. I probably seemed totally drunk. My girls finally convinced me to go to bed.

By now, they had told us that if Matthew's fevers would go away, we could go home on Sunday or Monday. The fevers could just be a symptom of the Leukemia, but they could also be a sign of some hidden infection somewhere, and since he had no immune system to protect him, we needed to be sure.

The night that I slept at home was rough. The fevers were high, and the blood counts were low. Eventually, they decided to do a blood transfusion. I wanted to beat myself up for not being there for it, but when I got there, it was almost over, and Matthew was pink again, instead of yellow. Wow! What a difference. And he really seemed to feel better, too. I'm so glad they did the transfusion.

I will be a blood donor for the rest of my life.

Around the same time as the transfusion, Matthew's fever broke. It hasn't come back yet. It was definitely cause for celebration. He had a fever for 33 days straight.

Friday, they inundated us with information, so we would be well enough educated to go home and care for our son.

I didn't feel qualified.

Justin told me I better not make Matthew stay at the hospital extra time because I was scared. He was right, but it didn't make me less scared.

Okay. I know this next part is gross, so if you don't like to talk about poop, you may want to skip forward to the next paragraph. Friday, we also realized he had not had a bowl movement since Monday. A lot of the medicines he had been given can do that, but the doctor said that can be dangerous. There are a lot of germs involved in that bodily function, and the longer they sit there, the worse it gets. Since he was immuno-compromised, he didn't have the proper tools to deal with germs. So now, even though his fever was gone, we had another condition on going home. Matthew had to poop. They started feeding him laxatives.

Saturday, my sister (who is a Physician's Assistant) called and asked me a bunch of questions about his treatment, and I answered them all, complete with the names of the medications and side effects, and then I felt better. I knew at that point that I know enough to care for my son.

One thing I have failed to mention is that Matthew hates the hospital. That's probably self explanatory, but it's important here. He was sick of people touching him, and poking him, and messing with him. He was sick of being woken up for vitals, and he was sick of all the strangers checking him out. Couple that with steroids, which make anyone combative, especially an angry three year old.

By Saturday, it had become quite difficult to get his vitals. He hated the finger thing for the blood/ox, even though it's made for kids. He hated the thermometer in his ear, and he especially, especially hated the blood pressure cuff!

At midnight on Saturday night, the nurse came in to check Matthew's vitals, and he was NOT going to let that happen. After 10 minutes or so, she had finally gotten everything but his blood pressure. We tried that cuff about 8 times. He was flinging himself from one end of the bed to the other, and crying and screaming. I've never seen him like that. They said it's from the steroids. They call it roid rage. In the process of all of this, he knocked loose the needle that was accessing his port (the drum in his chest for the catheter), only we couldn't see that because it's under his skin. So, when she came back for vitals at 4 am, she saw that half of his chest was very swollen. The IV fluids weren't making it into his bloodstream. Instead, they were being pumped into the tissue in his chest.

They had to take the needle out, and put in a regular IV again. It was so sad.

Sunday morning came, and by then we were praying for poop, as funny as that sounds. It was the last obstacle between us and home. And Matthew was completely despondent by then. He didn't even want to talk to me or Justin, but he would respond in little squeaks. If someone else tried to talk to him, he'd either yell or cry.

Let's just say there were a few miracles on Sunday. Matthew qualified to go home, and we celebrated. The nurse said they get pretty excited about poop around there. He had another chemo treatment. This one was a long one. 2 hours. This was during my regular church time, while there were dozens of prayers said for Matthew. While dozens of people - maybe even hundreds - were at the end of a 24 hour fast for Matthew. My husband and his dad gave Matthew a blessing right before the chemo, and he slept through it. It was amazing. Maybe someday I'll share the details of the miracles that took place that day, but I will say that prayer works. Fasting works. I even think just having people think good thoughts in our general direction works. So, for all of you who did that, thank you. You can never know what it meant to us.

He woke up just as we were packing up to leave, and he was happy to get up and get dressed. He rode in a wagon as we left - free of IV's and that room that he hated. As soon as the doors to the ICS closed behind us, he perked right up, and was his old self again. He talked to each of his siblings while we drove home, and told them each how important it was that he had pooped today.

I love that kid!

Friday, July 22, 2011

The First Month

Matthew has Leukemia.

I never thought I could be so matter of fact about something that awful and terrifying. My baby boy, at just 3 years old, has cancer.

What can I say? The first month is crazy scary! You know there's something wrong. Everyone knows there's something wrong. His grandparents, his siblings, his teachers. But every mother I've talked to says they went from doctor to doctor, and it always seems to take a month from the first weird symptoms to reach a diagnosis. You desperately want that, but you don't because what if it's something awful? Like cancer?

On the afternoon of June 12th, Matthew got this marble-sized bump on his cheek by his ear, and a bunch of steely sized bumps behind his ear and down his neck. We started with a visit to Urgent Care, but on Sunday, there aren't very many Urgent Care choices. The place we went was kind of scary! The room they put us in literally had a hole in the wall. The doctor, who was maybe 25 years old, diagnosed an infected salivary gland. He prescribed antibiotics and said to give Matthew lots of citrus to get the gland working so it would expel anything that was blocking it.

We went home and gave him orange juice and lemon drops, but by bed time, the bump on his face, and one of the ones behind his ear had more than doubled in size. He also had a fever. We decided to have him sleep in our bed, and by midnight, when the bumps had again doubled in size, we decided he needed to go to the Emergency Room. I took him to Jordan Valley. The doctor there took great care of him, and gave him a high dose of antibiotics and pain medicine. She wanted us to follow up with our Primary Care doctor the next day.

I had surgery that next day to get my gallbladder out, but thankfully it was very early in the morning. By the time Justin got me home, he was able to go fill prescriptions, and take Matthew to the Dr. He said to continue antibiotics and pain medicine when needed.

Ten days later, when the course of antibiotics was done, Matthew had had a fever every day, and the bumps had only decreased in size by about half from the largest size. He was also sleeping an extra 4 - 6 hours a day. So, I took him to Urgent Care again. Only it was Wednesday evening, so thankfully it wasn't the scary one! The doctor there said that he was very concerned. Fevers shouldn't go on this long, and the infection should have cleared out by now. He gave Matthew a nasty shot of really strong antibiotics in his thigh, and said that if it wasn't significantly better by Friday, we should call our Primary Care doctor to set up an appointment with a pediatric Ear, Nose, and Throat doctor. He also wrote a prescription for much stronger antibiotics. So, we went home and by Friday, the bumps were very small - the size of a steely.

So, we waited. We kept giving him antibiotics for another 10 days. The bumps never went away, and although the fevers did, they came back every night. During this time, we finally sent him back to daycare. His teachers there said that he was happy to be with the other kids, but he would lay down to rest after about an hour of playing. Plus he initiated his own nap time early each day.

At the end of another 10 day course of antibiotics (20 days now) we called the Primary Care Doctor, and he set up an appointment with an Ear, Nose and Throat doctor for July 1st, which was a Friday. This doctor was very well known, and his office was decorated with awards. He felt the bumps for a minute, and named about ten diseases that could cause this. The only ones I remember are Tuberculosis, Cat Scratch Fever, some sort of tumor, or Lymphoma. That was the first time I thought it could be cancer, but I pushed it out of my head. This doctor wanted Matthew to be seen at Primary Children's, so he called a specialist there and set up an appointment, but he didn't have an 0pening until July 18th. Matthew had already been sick for so long, and I was worried. I told the doctor I was concerned about the weight loss (at this point, I would guess he had lost around 5-10 lbs.) and his complete lack of appetite, and really concerned about the fevers. He told me the next time a fever broke 102 degrees, I should take him to the Primary Children's Emergency Room.

So, we waited more. Prior to this appointment, the fevers had been 102 - 105 every evening. So, we figured we'd be going that night, but from that day on, the fevers hovered around 100 - 101. It took until Tuesday July 12th, at 3:30 in the morning for a fever to go high enough again. 103.8. We rushed to the E.R., hoping to get there before the fever went down too far, in fear of being sent home with no answers.

It turns out there were other much worse fears confirmed that day. The last week or so before we went to Primary's, we had both researched Lymphoma, and we both felt very sure that's what they were going to tell us. We were a mess. What's worse, we hadn't really talked to each other about it, for fear of worrying each other.

The E.R. doctor said that a month of fevers is not normal, and can only be a symptom of some very serious conditions. He wanted to check Matthew's blood. The blood didn't give him an answer - just more questions, but it was enough to admit Matthew to the hospital. He told us at that point that he suspected Matthew had Leukemia, because of the serious lack of white blood cells in Matthew's body.

We were admitted that morning to the ICS (Immunocompromised System), which is where they treat all the cancer patients. We cried a lot. We saw a bald child across the hall, and cried even harder. They kept coming back to draw blood. I felt like they were taking a precious resource because he already had so little of it. They tested for a gazillion things, hoping it was a serious virus, and not cancer. They tested for two days, with no answers, and no one could see cancer cells in his blood. So, they finally asked us to let them do a bone marrow aspiration, which is a procedure where they put him under anesthesia and drew liquid from his bone marrow in order to determine for sure whether it was Leukemia or not. This was done on Wednesday morning, and by Wednesday afternoon, we had an answer. It was definitely Leukemia. They didn't know the details, like the type of Leukemia, or the classifications associated with it, but they wanted to start Chemo the next day.

What a whirlwind!! It was overwhelming and scary in a way that no one could possibly understand without going through it. We went from having panic attacks to feeling numb to survival mode, and back to the beginning over and over again.

The people we bought our house from had a daughter who had cancer as a toddler. I remember my heart aching for them, and feeling like I could never possibly be strong enough to endure a trial like that. Funny how the Lord teaches us about our own strengths and weaknesses.

After all the tests were finally complete, they gave us all the details about Matthew's Leukemia. Leukemia doesn't have stages like other cancers, because in other cancers that's how you identify how much of the body it has affected. Leukemia affects the entire body because it's in the blood, so staging doesn't work. Instead they classify the characteristics of it.

Matthew's diagnosis has a long name. Standard Resistance Acute Lymphoblastic Leukemia with Precursor B, but usually it's more abbreviated: SR ALL Precursor B. Typically, people would just call it ALL. Those words make it sound scary, but actually if you have to have Leukemia, this is the one you would choose. Standard Resistance means he should have a typical response to the classic treatments, and Precursor B means his B cells are infected, rather than his T cells. I'm not sure why that's good, but it is. He will have 28 days of induction therapy (today is day 9). This is where they induce remission. It's harsh, and rough, but necessary. After induction comes 6-9 months of intensive chemotherapy. After that, it's maintenance therapy, which I believe is only one treatment a month. The three phases will last a total of 3 years, 3 months if there are no delays, which means Matthew will finish his treatment roughly the month of his seventh birthday.

I realize this has been really long for a blog entry, but there are a lot of people asking how we figured it out. So, here we have it. Plus, I want to document this for Matthew. Someday, I hope he will be able to look back on this and know it made him the strong man that I know he will become.