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Monday, June 30, 2014

The Beginning of the End

Tomorrow, Matthew will get his very last lumbar puncture. I long ago lost count of how many he's had. This is the first of the last things. The beginning of the end.

His treatment is almost done.

I decided it's time to work on tying up the loose ends on this blog. So, I'm going to start with an update.

Our sweet Matthew had a quite a year this year. This cold and flu season was rough. Last year, he was in preschool, and when he started to come home with a new cold every week, we pulled him out of school for the rest of the season. This year, it was Kindergarten. It wasn't the same. We couldn't just pull him out. Also, He got to a point during the summer before Kindergarten where it became clear that he couldn't be cooped up in the house anymore. We had to stop stressing out about every little bug he caught.

So, he went to daycare in the mornings and Kindergarten in the afternoons. He loved it. He enjoys feeling like a normal kid. He got pretty ticked off, actually, if he had to miss a day, so I would end up taking him to daycare whether I needed to or not. It gave me time to get homework done anyway. For summertime, we have him in daycare two days a week, simply for the social interaction.

There are many upsides. He's happy. That's the biggest one. His oncologist once told me we were saving his life so that he could live it, and I should let him do that. It's really beautiful to sit back and watch him live. He really appreciates it. He loves life. What a gift for a six year old to have!

The downsides of all that exposure, however, are sort of scary. He has a new cold every week. Sometimes two in a week. He missed about a third of Kindergarten and he was admitted to the hospital twice last school year. Prior to these admits, he hadn't been inpatient since two months after diagnosis, so that was pretty shocking. Also, his chemo regimen is like a yo-yo. On, off, on, off, 1/2, full, off, 1/2, and so on. He hasn't stayed on full chemo for more than two weeks since before the blood infection last summer. That scares me a little. What if we aren't suppressing his bone marrow enough? But often, we check his blood and he's neutropenic (dangerously low infection fighting white blood cells) or really close to it, so he must be suppressed.

Faith is taking the first step even if you can't see the whole staircase. His doctors know what they're doing, and they've saved lots of kids before him and will save lots after him. They told me to send him to school, and they're right. It's been good for him, as hard as it was to know he was at higher risk for so many germs there.

Matthew doesn't remember his life before his cancer. I realized this a few months ago, when talking with him about the end of his treatment. I told him that they'll take his port out just before he turns seven, and he was horrified. Why would anyone want to take his port out?? As far as he can remember, it's always been there. It opened a whole new can of worms, actually, because now he's afraid that when they cut him to get it out, he'll bleed to death. Our amazing child life therapist up at the clinic has been helping me talk with him more about this to help him wrap his mind around it.

Now that it's summer time, the exposure to germs has lessened, although he's been coughing now for like two months. We've been unable to identify the cause of the cough, and we've tried multiple allergy medications. It's starting to feel like one thing after another goes wrong with him, and I wonder if that's what late effects are like. Just a general lack of good health. I don't know, but I do know he's tired of it. Poor kid. But all things considered, we'll take some coughing, compared to where we began.

His doctor finished her entire residency. We were sad to see her go, and some of the other moms and I got together and made her this video:

http://youtu.be/OqGoOjB1dCM

And for your viewing pleasure, here are some pictures of the last year:

CureSearch Walk

Sunscreen

With his oncologist, Dr. Jasmin Jensen

Dr. Jensen's residency is over, and Matthew loves her, so he wanted to tell her goodbye. The message says, "From Matthew, Goodbye." and it has a picture of him with me, and his two doctors. He loves them. 
Dirty face and silly face after camp Hobe.

Closeup of the Camp Hobe dirty face.

First lost tooth.

Soooooo tired after camp!






Tuesday, September 17, 2013

Blood Infection

Time to break radio silence.

Maintenance is a long, steady, exhausting run. I'm sure I've said this in the blog before, but it bears repeating: If the first 8 months were a sprint, now we're running a marathon. Slow and steady wins the race. The thing is, during maintenance, nothing much happens. It's just month after month after month of exactly the same thing. As a result, there's not much to write about.

There have been a few things that I thought maybe I should have blogged about, but nothing big. Matthew is lactose intolerant now, as a result of his cancer treatment. We don't know if his tolerance for lactose will return to normal after treatment or not. Only time will tell. He's had some mysterious headaches that freak me out to the enth degree. I got a little bit crazy for a couple of months, mostly around those headaches. You see, this is the time when he is most likely to relapse -- from now until about a year after he stops treatment -- so I am on a constant alert for symptoms. It's like being filled with adrenaline all the time. Eventually, it gets to you. Matthew's poor doctor had to talk me down after a couple of months into my crazy time. They check for these things regularly, and the headaches would get progressively worse if they were an indicator of something sinister, not come and go. I just needed someone to reason with me. I guess it just feels like we're in a constant state of waiting for the other shoe to drop -- as if enough shoes haven't dropped. Also, we're always adjusting Matthew's oral chemo dose a little bit at a time. He has a tendency to run high on ANC, and we're always trying to suppress it just a titch more. Well, a couple of months ago, we overdid it, and his counts tanked. The result was that he became neutropenic and got to spend a few weeks confined indoors. He did not like that. I asked friends on Facebook to send cards, and he got "Christmas in the Mailbox" every day for about a week. People are amazing. He bounced right back from that, and went right back to his normal dose (without the upgrade we had tried to take) of oral chemo.

Matthew has this thing about him. He manages to get awful maladies, but then he is hardly affected by them. It's so strange. You would never look at him and know what he's going through or what he's gone through.

Well, another shoe dropped this week, and in true Matthew style, it's not as bad as I've always imagined it could be. I actually think it's not as bad as the doctors and nurses imagined it should have been. I say that because two different times, they acted very urgently about his well-being, and then they saw him, and they all sort of mellowed out. Quickly. Like someone had let the air out of a balloon.

I'm just going to tell the whole story, because I put little bits and pieces on Facebook, and I think I left some people confused.

Last Sunday (9 days ago, now), Matthew complained of a sore throat. He said it hurt him a lot to swallow. I'm far enough in nursing school to know that I should look, but not far enough to know what to do if I spot weird things. So I looked, and spotted something weird, and had no idea what to do. He had these red polka-dot like spots on the roof of his mouth, at the back, near his throat. The next day, he had a headache, runny nose, and a cough. I gave him benadryl to dry out his sinuses and sent him to school. That evening, he had a fever of 101.7, so I took him to the ER. The rule is that if the fever is above 101, we go to the ER. Even if it's just from a little cold. If I understand correctly, the reason is because he has a port, and a blood infection at the site of his port is too close to his heart for comfort. They have to be treated immediately.

So, for his little cold, we went to the ER. They gave him IV antibiotics (Rocephin), a bag of fluid, and checked his ANC. It was 2000, so we were clear to go home. But they ran a strep culture (rapid test was negative), a nose culture, and a blood culture. This is all standard every time he goes to the ER, right down to the same meds.



Tuesday, his fever was still above 100, so I kept him home from school. I called the clinic, and his nose culture had come back. Rhino virus and entero virus (which I found out later always come back together. It just means rhino virus. ... weird.) Matthew had the common cold.

Wednesday, his fever was gone, so I sent him to school. This had been enough trouble already for a cold. It was a totally normal day. He went and played at a friend's house after school and everything. Then, we put him to bed, and when I was getting ready for bed, I noticed a message on the answering machine. It was the ER. There was a concern about his blood culture. I should call them back. The message was from 4pm, but I didn't see it until about 10:30. I called them, and they said something had grown in his blood. We needed to come back to the ER. I asked should I wake him up or come in the morning? They said wake him up and come now. When we got there, they were urgent. Therefore, I worried. They didn't want to give him anything to eat or drink. I thought maybe his port was infected -- something that is always a worry in the back of my mind, because his port is right next to his heart. If that was the case, they would surgically remove it. In the beginning of his illness, I got the impression that we'd be lucky if we made it to the end with just one port, so I've been braced for it all along.

I'm going to interrupt here and say this. Blood infection is one of the things a cancer parent fears the most. Believe it or not, it can be even scarier than relapse. When we talk about kids dying because of their treatment, rather than the cancer, it's usually because of blood infection. They can cause sepsis, meningitis, or blood clots resulting in stroke or pulmonary emboli. If a kid in cancer treatment dies suddenly, it's likely that they had a blood infection. And just like you never think your own kid will be the one who gets cancer, once you're in that club, you think your kid will never get a blood infection. It's shocking when the ER staff tells you by phone to come now, even though it's the middle of the night, because there's something in his blood culture. Shocking and scary.



So, we went back up to the ER, they were urgent, and I was worried and scared. They put us right back into a room. No triage. Weird. And they gave him IV antibiotics again (Rocephin) and fluids. They took more blood for a new blood culture, and the doctor came and talked to me. She said that although they didn't know what it was yet, it was a gram negative bacilli. Basically, that just tells them how it responds to a certain die, and the shape of the bacteria. Sort of to help them classify it. She said that since Matthew didn't have any symptoms (even his cold symptoms were mostly resolved), we could go home, but we needed to follow up with oncology first thing in the morning. Strange, after all that build up. I took him home to stew over it there.

Thursday, I called oncology. At first, the phone call was very routine, but then I said they had found a gram negative bacilli in Matthew's blood, and the urgency set in. Again, that pit settled in my stomach. They wanted us to come up that day to meet with an infectious diseases doctor. We should pack a bag for an admit. Holy moly.

We got there, and they didn't want Matthew to eat. There was talk of scans. What were they scanning for, Justin asked. Oh, the doctor will come explain. It was overwhelming and new, sort of like when he first got sick The infectious diseases doctor (somehow, that's even scarier than oncologist) came in and explained that the bacteria in Matthew's blood is a very slow growing bacteria, so they still aren't sure what it is. They think it's a bacteria called fusobacterium. This is a normal bacteria that lives in all of our mouths. The sores at the back of Matthew's mouth on Sunday, combined with his immune compromised status, most likely allowed this bacteria to cross over into Matthew's blood stream. This is what the doctors have always warned us about. He couldn't even fight off the bacteria that lived in his own body. He couldn't fight them off, even with an ANC of 2000. That was a surprise to me, and I have spent 2 years educating myself as much as I can about these things.

Fusobacteria, once in the blood, is notorious for causing blood clots in the jugular or pulmonary emboli. If there's a blood clot in the jugular, it can "throw off" into the brain and cause a stroke. The scans the nurse had mentioned were CT scans to check for clots in the neck and lungs. This would determine our course of action. We were most likely looking at a 2-6 week admit.

Holy. Moly.



So, we went down and did the scans. Aaaand ... nothin. There was nothing on the scans. Totally clean. And since he still showed no symptoms related to this ailment, they decided that it would be okay for us to take him home, provided that we have home healthcare come to our house and teach us how to administer IV antibiotics.

Our fabulous nurse found us a home health company that was different than the last one we had out here (because they were not wonderful), and set it all up, and we were on our way. On the way home, I got a call from the home health care company, saying that they don't have nurses where we live, so they had to outsource. You guessed it ... to the sucky place we were trying to avoid. Sigh. So, then, they went on to tell me that they would be out first thing in the morning. Well, that wasn't okay, because he had a dose of antibiotics due at midnight. But I was told ... and I quote ... "Nursing doesn't happen in the middle of the night."

Uhhhh okay. We'll see you in the morning then. I guess.

And then I called the oncologist on call. I was 12 minutes late to reach someone at the clinic. They had just barely closed. The on call doctor said it was not okay to wait until morning, so she called the home health company back. There was a lot of back and forth, during which she said to pack up and come back, because we were being admitted until morning, but then the home health company miraculously figured out how to make nursing happen in the middle of the night.

If my writing is not thick with sarcasm, you should insert it above. I seriously do anything to avoid relying on home health care, because we have rarely had a good experience.

But, we got a huge delivery at about 9pm, and then as scheduled, we got a nurse at 11pm, who taught me how to prepare and administer Matthew's IV antibiotics. He was nice, too, and knew what he was talking about. Bonus. Then in the morning, another nurse came to observe me preparing and administering the antibiotics, to be sure I had it right. I did, and they said I was good to do it on my own.



Since then, we've been giving Matthew meropenem every 8 hours by IV. Justin learned how to do it, and we're working together so he can still work and I can still go to school. They gave us the okay today to send Matthew back to school tomorrow. His port will be accessed, but we'll just give the antibiotic in the morning and evening, and a dose in the middle of the night.

He did knock the port needle loose once, which he often does when he has to stay accessed for a long time. When Justin tried to flush it in the morning, he said it hurt, so we called the home health company. They sent us a nurse (who we recognized from before), and he tried to access the port, unsuccessfully. This guy bugs me a lot. He does things that I know he's not supposed to do, and he tries to access Matthew's port, when it's obvious that he doesn't know how, and every time, he claims that the port must be broken. So, we had to go up to primary's to have a nurse access him. Of course, the port is fine.

That makes 4 trips to the hospital and 3 visits from home health in a week. It's been crazy! But at least we're sleeping in our own beds.

Here's what we can expect. Thursday, the infectious diseases doctor said they were sending the blood samples to ARUP (a blood lab) for testing. She hoped we would know more by Monday (yesterday). What we have so far is that they still think it's fusobacterium in the first sample (from Monday in the ER), and that nothing has grown in Wednesday or Thursday's samples. This is good news all around. They're testing the infected sample for sensitivity to different drugs, in hopes of changing from meropenem every 8 hours to rocephin every 24 hours, but as of this afternoon, we didn't have results for the sensitivity tests. They said he can go to school tomorrow, as long as it doesn't interfere with his med schedule.

We should get more info tomorrow, but then again, maybe not. We'll see.

Thanks for the support and prayers! Blood infections can be so scary! But this is okay. We're stressed, but it's okay. Mostly we're really tired.


                                   Captain Crunch and meropenem. The breakfast of champions.

Friday, March 1, 2013

Donna Day

My Tribute to Donna, Cancer Moms, and Too Many Children Who Have Died


This post will really be out of the norm for Matthew's blog. Typically, his blog has been more of a journal to keep family and friends updated on his health, but this entry is for a cause. Before I get into it, I will update Matthew's health.

He is doing well. Maintenance is sort of like a marathon. It just goes on and on. His treatment has been so long now, I barely remember what it was like to take care of him before. I am actually afraid of what it will be like to be discharged from oncology, because I don't feel like a regular pediatrician will have enough expertise to take proper care of him.

At first, Matthew's treatment was like a sprint. It was really hard work. All the time. We were breathless and exhausted. Like the rabbit - hurrying to win the race, but too tired to reach the finish line. Now, we have slowed down to a steady jog, and worked some of our old life back in. Like the tortoise - slow and steady wins the race.

We give him chemo in the form of pills every day, with a handful of extra pills on Thursdays. In order to ensure he gets them on an empty stomach with no dairy products for 2 hours before or after, we wake him up at 11, before we go to bed. He can sit up and take up to 14 pills in his sleep. He goes in for a check up with his oncologist once a month, during which he gets an intravenous dose of a chemo called Vincristine, and for the 5 days following that, he takes high doses of steroids to maximize the effectiveness of the Vincristine. Once every 3 months, during his monthly checkup, he also gets sedated for a lumbar puncture (spinal tap) and they administer Methotrexate, another chemotherapy, into his spinal fluid, so that his brain will receive it. All of these things work like clockwork, and have been happening for almost a year, now. They will continue until September of 2014. There are side effects, but most of them are relatively minor. Sometimes, they're upsetting for a mother to watch, but when put into perspective, I can be patient and remember that there is an end date in sight. This isn't forever. So far, it doesn't seem to have caused any damage that won't eventually heal. Matthew is truly one of the lucky ones.



Now. Let's talk about Donna. Donna was a beautiful little girl who died of a brain tumor called Papillary Meningioma in 2009. Last night, I talked about her mom, who blogs under the name Mary Tyler Mom, on my Facebook page. Here's some of what I said:

In 2010, she wrote Donna's cancer story for her 120 Facebook friends. 1 post a day, spanning the month of September, and spilling into October, each chronicling a month of Donna's life from her diagnosis to her death. 

In 2011, she published Donna's story on her Mary Tyler Mom blog. This is when I discovered her, trying to make sense of what was happening to my family. 

In 2012, Huffington post picked up the serial, giving Donna's story a massive, national audience. Now, her Facebook page, alone, has more than 11,000 followers.

I'm honored to say that Mary Tyler Mom has asked me to participate in some writing projects with her. I won't give away the projects she's planning, but I do want to talk about tomorrow. 

Tomorrow is Donna Day. Many bloggers are coming together to write their stories about how their lives have been affected by childhood cancer.

If you'd like to read Donna's Cancer Story the link is below. 

Donna's Cancer Story.

I said last night that it's hard, but worth it. I wasn't kidding. It gave me hope during some of the darkest days in my life. If I could read it, knowing the whole time that Donna would die in the end, just 2 short months after my 3 year old child was diagnosed with cancer, and feel uplifted, I promise you can too. It will be worth your time. Sometimes, people told me I needed to lay off the blogs, for my own good. Sometimes, people really worried about me. But it was like lancing a wound. There is truth here.

This story tells the truth.

That is what I admire so much about Mary Tyler Mom. We don't always see eye to eye, but I admire her so much because she always tells her truth. She doesn't sugar coat it. She is so brave.



I'm going to switch gears now, and talk for a minute about my cancer mom friends. If you know me very well at all, you've probably heard me talk about them, but we keep our group pretty private. I've talked with them, and received permission to write about them. We want to share a message of hope as well.

Our group started with one mom. Her son, who was barely more than a baby, was diagnosed with cancer, and she kept hearing from people that so-and-so's neighbor's daughter had cancer, or so-and-so's nephew had cancer. She talked with a few of them, or emailed with them, and eventually they connected on Facebook. They started arranging cancer mom dinners and playdates for the kids. When your child is immune compromised and can't be around other kids, it can be so lonely! But what about other immune compromised kids? Playdates with them feel a lot safer. Their parents KNOW the rules. They live the rules.

This mom started meeting more moms, and they started meeting more moms, and I'm sure you can see where that led. Our group, The Utah Moms with Cancer Fighting Cuties, now has more than 205 members on Facebook. We meet regularly for dinner, we have playdates in the summer, and maybe the best thing is that lately, we raise money for childhood cancer research. Like Mary Tyler Mom, what started small has grown exponentially into something no one ever expected, and we are making a difference.

Our charity of choice is CureSearch, but, at least in my mind, it is a close toss-up between them and St. Baldrick's. We have a lot of moms who have and still do participate in St. Baldrick's events as well. If I ever ask you for research money, it will most likely be for one of those two.

The cancer moms have helped me in so many ways through this journey. When I'm scared, I go to them, when I'm excited, I go to them, when I'm confused, I go to them. They inspire me and uplift me, and make me feel human and normal when I often feel separate and labeled by the rest of the world. In the 21 months since Matthew's cancer diagnosis, a lot of moms have begun and finished treatment for their kids (most protocols are more like 6-8 months long). I have seen many families endure bone marrow transplant, and radiation therapy, which are both particularly brutal, and too many children have died.

Our Facebook page is a living, breathing entity. We have a collective mood and we support each other fully. When there is news of a relapse, there is silence, with the exception of that one thread, typically for several days. When a child dies, we all mourn, even if we never met the child or the mom except on Facebook. When someone is waiting for news after a scan or a test, we hold our collective breath until there is an answer. Good or bad, we deal with the news together. Normal social boundaries are not the same among us. In Utah, there are typically a lot of social dividers based on things like religion and where a person lives, among other things, but those things are left at the door in our moms' group. We transcend that. We all have something to bring to the table, and we talk freely - no holds barred.

There are blood drives and fundraisers and so many positive messages shared. But the best thing we do is our CureSearch walk. In 2011, 8 moms came together, and rallied 40 more. These moms each formed teams. These teams each walked in honor of a child who is facing or has been faced with cancer. Some teams honored multiple kids. They did this mostly on their own. CureSearch does not have a lot of overhead, which translates to very little help from them, compared with other similar charities, but also translates to almost all of the donated funds being used for the intended purpose. In this case, it's for childhood cancer research. The goal that first year was $50,000, and the Salt Lake City walk raised $72,000.

In 2012, those 8 moms and 83 teams set a goal to raise $90,000 and raised $170,000, 100% of which was donated straight to the Children's Oncology Group for research - Curesearch didn't keep any of it. That day was filled with so much joy! This year the goal is 90 teams and $190,000.

I am proud to call these women my friends. It's important to understand something here. We don't do this to improve treatment for our children. Our children already have cancer. Their treatment course has already been decided, and research isn't going to change that, unless a miracle, overnight cure is somehow found tomorrow. We all know that's not what we're aiming for. We want better treatment for the next group of kids.

Matthew shouldn't have to endure 3 years and 2 months of chemotherapy. By the time he's done, it will have been nearly half of his life. I have constant fear of relapse, secondary cancer and late effects. Even if they cure his cancer, he may suffer for the rest of his life because of what we had to put him through to accomplish that.

My friends shouldn't be watching their kids go through cognitive, speech, or developmental delays because of the chemotherapy. People should not have to sell all of their Earthly belongings and move their families to another state in search of treatment, living in a halfway house, a Ronald McDonald House, a hotel, a camp trailer or a tiny apartment with no heat.

Donna shouldn't have died. My friends shouldn't be burying their babies and trying to make sense of it.

Okay, so now what? I can wallow if I want to. Everyone would understand. Mary Tyler Mom could certainly have wallowed. But what good would that really do? It doesn't change anything. Donna died, and nothing is going to change that. Matthew has cancer, and nothing is going to change that, either. I can either wallow and become bitter, or I can act on it and use it to become better. I want to be a better person. The reason I'm writing about all of these women is that I am inspired by them all to be a better person!

We don't raise money for our kids. It's imperative that you understand that. Our kids are the reason we raise money, that much is true, but that money will not help our kids. You know who helped our kids? The people who did this after their kids got sick. The people whose kids died during a time when no one lived through childhood cancer. That's how this works. If Matthew had been born back when I was, he would have had roughly a 10% chance of survival. His doctor recently told me that's because he would only have gone through induction therapy - that's 28 days.

So, no, we aren't doing this for our kids. We are doing it for yours. Or maybe your sister's. Or your next door neighbors. Or your grandchildren. We are doing it for the 1 in 300 boys, or 1 in 333 girls who will be diagnosed with cancer before they turn 20. We hope that when it happens to them, they will have better options than our children did.

Now, the point of this entry today, the cause I mentioned at the start, was Donna Day. See, Mary Tyler Mom's version of the Curesearch walk I described above is an annual head shaving event for St. Baldrick's. I'm going to share with you some of her words about it:

The purpose of the Donna Day campaign is to raise $ for our head shaving event on Saturday, March 30 in Chicago.  It is our second event.  Last year's started with a goal of $20K and we raised $79K!  This year we have many fewer heads to shave and have set a goal of $30K.  Our oldest shavee is 89 years old and she is doing it with her daughter, a returning shavee for us.  WOW!
This is a link to their team page. To donate to the team, use the GREEN donate button. Any amount helps. Seriously. Anything. If you have a dollar to spare, it helps. If you have ten, that's fantastic. As I type this, their team has reached just over 41% of their goal. Just like Matthew's 1 1/2 pills a night and 14 on Thursdays, slow and steady wins the race. This is how we will improve childhood cancer treatment for the children of the future. St. Baldrick's funds more pediatric cancer research than anyone in our country, other than the U.S. Government.

They are still happy to take on shavees, too. If you're up for it, volunteer to shave your head. I hear it's the experience of a lifetime! There's still plenty of time. You would commit to shaving your head and ask people to donate to you for it. You'd have 30 more days to raise as much money as possible for the honor.

I will close with a quote that often comes to mind when I think of the cancer moms, and the community that has rallied around Mary Tyler Mom.

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."

~Margaret Mead

Perhaps a combination of some small groups of thoughtful committed citizens like ours will fund the brilliant ideas that will cure DIPG, Papillary Meningioma, Leukemia, Osteosarcoma, Wilm's Tumor, Neuroblastoma, and the rest of the childhood cancers, so that our children can look back on this day and age and think of childhood cancer in the same way that I think of Polio - as something awful that used to happen to kids. 

Sunday, January 20, 2013

The Storm

A friend of mine asked the cancer moms for notes to send to someone she knows whose child was recently diagnosed with the same cancer as Matthew. I put my note together, and then decided that this is something I'd like to have on my blog. Maybe a stranger will stumble across it in a time of need, or maybe it will just be good to remember later in life that this was how I felt now. Either way, I really liked the way it turned out, so without further ado:

Dear family, I know that I'm a stranger, and it may be strange to receive such personal words from me, but I'm writing them anyway, in hopes that they will help you.

My son, Matthew, was diagnosed with Pre-B ALL at the age of 3 1/2. He's 5 now, and we're still plugging away at treatment. At first, things were really hard, and I won't lie, they still sometimes are. But just like in weight training, when you do hard things, they get less hard. Trust me on this: you can do hard things.

People will tell you you're strong, and that might feel frustrating because you'll feel tired and worn down. Just bear in mind, you're doing what any loving parents would do, given your set of circumstances. People will admire you for doing it, and that's okay. They could never understand, unless they had been here themselves, so try and remember that those comments usually come from a place of respect for you, even if you feel like they are misguided.

I have a good friend who went through treatment for Ovarian Cancer at the same time as Matthew's heaviest treatments. One day, she told me that she just wanted to be done so that her life could go back to normal. The thing is, it never will. Everything changes, even after treatment. You will view the world through different eyes. My friend didn't like hearing that at the time, but later said that it helped her to look forward with faith that she would be able to make something special out of her life as a survivor. A cancer survivor is defined as anyone living past their diagnosis, so your daughter already is one. Cling to that. She is a survivor and a fighter. I'll never forget the first time someone called my son a survivor. It's a powerful word.

I want to end with this. One of my favorite quotes talks about a storm. I view cancer as a storm, and I wholeheartedly believe it has something to teach us. Through the trials we endure during this time, we will emerge as stronger, more courageous people. And at some point, after the storm ends, we will find a place of peace and calm.

"And once the storm is over you won't remember how you made it through, how you managed to survive. You won't even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in. That's what this storm's all about.”

― Haruki Murakami, Kafka on the Shore

Even though you don't know me, please know that my heart goes out to you. This year will be hard, but every day, your family will grow stronger.

~Wendy Burr. Mother of Matthew Burr - cancer survivor, and warrior.

Monday, January 14, 2013

Half Way There

Tomorrow, Matthew will go in for his monthly oncology appointment, and it's really just a standard monthly visit with IV chemo. But tomorrow is sort of a milestone, because it marks his halfway point in treatment. He has been in treatment now for 19 months, and he will be in treatment for 19 more.

If that sounds like a lot, that's because it is. From my experience, most cancer treatment protocols are complete in 8-10 months. Matthew's treatment will consist of a total of 6 phases of treatment, the first 5 of which did, actually, fall within that time frame, and the last one is called Maintenance. So, it's similar, but the Maintenance has turned out to be a bigger deal than I thought it would be. He gets chemo every day. He hasn't had a break from it since Spring. That's unusual, because most cancer treatment protocols call for a break every month or so. The constant poison is protecting him from relapse, yet is slowly damaging parts of his body in ways that I'm not sure he'll ever really recover from. Only time will tell. It's really hard to give him medicine that hurts him like that and have no choice but to keep giving it.

I've seen a lot of families go through diagnosis, treatment, and ring the bell - an emotionally charged ceremony indicating that you are done with treatment. I love those families, and I am so happy that they are moving on with their lives.

I've also seen too many families lose the fight. It makes me sad and angry. I hate cancer so much. I hate watching my friends take their babies home to die. I hate imagining what it would take to make peace with that. And every time, my resolve to act is heightened.

19 months has really changed our family! Really, everything has changed since that awful day. We've had the lion's share of trials heaped on top of the cancer trial, but we're stronger and learning from it all every day. I wonder what on Earth we'll be like in 19 more months!

In that time, I expect to see a few more waves of families come and go through my cancer group. The girls who have been in treatment with Matthew all along will finish up this summer. New moms will come, treat their kids and go. More relapses and losses will take place. Hopefully, 19 months will be the end of it for Matthew. Hopefully, he will be able to move on with his life and have a normal childhood, free from the heavy worries he has now.

As for me, I will be a cancer mom for life. I am forever changed. In the beginning, I used to say I could either let it make me better or bitter, and that's still true. Some bits of it still make me feel bitter, and I'll have to continue working to get rid of those feelings, but some parts of it have made me a better person.One thing is for sure, I am now an advocate.

Thank you for supporting us through the last 19 months. I have started thinking of the first year as our "No good, very bad, terrible, horrible year." Mister Rogers said his mom told him to always look for the helpers during the hard times. She was right. There have been angels with us all along the way, both visible and not. I am grateful to all of them. To all of you.

Let's hope that the next couple of years can be the "Peaceful, joyful, happy time, having fun years."

Florida, Part 2





They say better late than never, right? Well this is really late, but here we go anyway.

I've been reminiscing all morning about our trip, and decided it was time to finish the monumental task of blogging about it. The hardest part is pictures! I can write all day long, but we need some good pictures.


In order to help my memory, I went back through my Facebook posts from July. I wanted to be sure I hate the days correct. Our trip went from Monday, July 9th through Sunday, July 15th.

I already blogged about Monday. That was in Florida, Part 1. The whole day consisted of travel, and getting from Utah to Florida was quite an adventure for us! I'm glad I wrote about it when it was still so fresh on my mind. The parks were awfully memorable in their own rite, and I think I'll get it all down okay. It's fun to remember back on it.

It was truly the trip of a lifetime. The thing about that trip is that Make-A-Wish, combined with Give Kids The World and all the parks involved, made sure that we wouldn't have to spend a penny of our own money if we didn't want to. They fed us, housed us, gave us a vehicle and gas money, they even gave us souvenir money. That could sound so frivolous, but when ALL of your money goes to bills, living expenses and medical expenses, eating out and buying fun things is really hard to allow yourself to do. A lot of people wouldn't be able to go on these trips if they weren't truly all expense paid. What it did for us was priceless. It gave us one full week without worry. We didn't worry about cancer, money, appointments... we just did what we wanted to, when we wanted to, and we didn't have to worry about consequences. If you ever wonder what good a trip will do for a family going through a medical crisis, that is it, in a nutshell, for me at least. By sending them on these trips, Make-A-Wish is removing worry from their bitter cup for one whole, beautiful week. A lot of wounds can heal in that much time.

But I digress. Let's talk about the parks! First, I'll explain what passes we had.

  • Disney World: There was a 3 day park hopper pass for Disney World. This gave us 3 days to visit 4 Disney Parks: 
  1. The Magic Kingdom (this is what you picture, when you think of Disney World, with Mickey's Castle, the parade, the fireworks, the Small World and Teacup rides.... etc),
  2. Epcot (focuses on technology and culture - this is the park with the giant golf ball at the front.)
  3. Disney's Hollywood Studios (this is about live shows and virtual rides)
  4. Animal Kingdom (basically a great, big zoo with rides)
  • Universal Studios: There was a 2 day pass for Universal Studios, which consists of two parks, accessed by the same main entrance:
  1. Universal Studios (this park is exciting - full of huge roller coasters, and universal characters, like Spider Man)
  2. Islands of Adventure (this is made up of five "islands" which are themed sections of the park. One of them - and obviously the most important, if you ask me!!! - is the Wizarding World of Harry Potter)
  • Sea World: There was a 1 day pass for Sea World, which is mostly shows, with a few rides.

What that comes to is 7 parks in 7 days, plus the time you need for traveling to and fro. It was BUSY! But so wonderful and fun.

Day 1: Monday - it was all travel and rest time.

Day 2: Magic Kingdom.

I went to orientation, where they explained to us how we would go about using all of the passes they were providing us with. Then we started big - with Disney's Magic Kingdom.

That was such a fun day! That park is made up of all these zones. When you first walk in, you're on Main street, which is all shops and restaurants, and at the end of the street, in all it's glory, is Mickey's Castle. There was a parade going on right as we walked in, and it started the mood off just right! I have an awesome video of it, but I cannot, for the life of me, get it to load. I may figure that out at a later date.

Anyway, after the parade, we walked straight toward Mickey's Castle, which is a great way to start things off. It really gets you into the feeling of the magic of that place.




After that, the park is sort of divided into "zones" for lack of a better word. There are, Tomorrowland, Mickey's Toontown Fair, Fantasyland, Liberty Square, Frontierland, and Adventureland.

We had a Give Kids The World button and a special pass on a lanyard, which allowed us to skip the lines. We either went in through the fast pass lane, or the handicap entrance. Because of this, we were able to quickly work our way from one ride to the next. We went without any rhyme or reason from one thing to the next, but we got tired really fast, and realized we were being rather inefficient. So, we got a map and found the attractions we wanted to see, and went to each one we liked in each zone until we were done.

Without that magic button, it would have taken up all 3 days of our park hopper pass just to do Magic Kingdom. It is BIG! But we did it in one day, and we went on every, single ride we wanted to go on. We ate lunch on Main street, and we relaxed in a VIP lounge that only Wish Kids and their families have access to. We wanted to stay for the fireworks, but in the end, we were all WAY too tired! We left half an hour before the fireworks were scheduled to begin. Oh well. Maybe next time.

Here are some highlights from Magic Kingdom:




Can you believe they cut the bushes to look like characters??


Stained Glass in the Aladdin-themed VIP Lounge.

The beautifully framed art in the lounge comes from the movie.

It's a Small World. Look at the wonder on his face.

Track cars. Allison was having a good time. Matthew hit his face on the steering wheel when his car (with Dad) stopped too fast. He remembers that bonk pretty vividly.




Day 3: Disney's Hollywood Studios

Sadly, we tried to enjoy this park, but the rain, combined with nearby lightening was shutting down all the shows. We went to one, or maybe two, and then they shut a show down right in the middle of it. We went to the car to wait it out, or decide what to do, but it was torrential rain. So we went back to the villa and enjoyed Give Kids the World for the day, instead. We were all pretty disappointed - Justin most of all.


I posted this on Facebook that day and captioned it with a single word. "Lame."


Day 4: Epcot Center and Animal Kingdom

Armed with 6 umbrellas, we decided to finish off our 3 day park hopper passes this day. Epcot and Animal Kingdom are both pretty easily half-day attractions.

We started with Animal Kingdom. By now, we had our method down. We got our map, plotted out the whole park, picked the attractions we wanted, zipped to them, and moved on. In all, Animal Kingdom only took us a few hours. It was kind of like a huge zoo with a few rides and a roller coaster or two. Generally, for big roller coasters, Matthew and I sat them out, and Justin went with the big kids. My vision was still a mess at this point, and my balance was questionable, so I opted out of most of the rides that would mess with those senses.

I think Animal Kingdom held the first big roller coaster. The big kids had been so patient while we did so much little kid stuff for Matthew. Matthew was exhausted, and it took the whole family to care for him. We had a stroller for him because he didn't have the energy to walk that much. The roller coaster in Animal Kingdom was awesome, and a highlight, especially for Allison. She saw it on a billboard, and really looked forward to it.

When we finished there, we moved on to Epcot. By then, it was afternoon, and we were all pretty tired. We chose about 5 attractions and zipped around to them. There were some really cool rides there.

The one inside of the big golf ball is cool. It shows a history of technological advancements of mankind, from tools to the internet, and guesses beyond. When Justin and Matthew sat down in their car for that ride, Matthew started pushing buttons and set them up to listen to the whole presentation in Swedish. Justin was not pleased.

There was another ride there that simulates flight, and you travel by video all around the country to see all these cool sights. It lifts you up in a big row of seats, and moves you to and fro, and jiggles and bounces through the whole ride. It uses a 3-d presentation, and air to make it realistic. It was AMAZING. We had a lot of fun on that ride.

Here are some highlights from that day:






The petting zoo was fun, and thankfully had an awesome hand washing station to use before moving on.





Matthew and I relaxed by the water while the big kids and Dad went on Allison's roller-coaster.




The Epcot golf ball. Pictures don't do it justice. It's really cool!


One more, from a closer look.





Day 5: Universal Studios

Universal Studios was quite possibly my favorite. I'm totally nerding out here, but it has the Wizarding World of Harry Potter, how could it NOT be my favorite?? I will refrain from loading the blog up with those pictures, because it's my favorite, not Matthews. But let's back up. The thing the kids loved about Universal Studios was that they FINALLY got to go on some awesome roller-coasters.

When you ask Mikey what the highlight of the trip was for him, he'll tell you it was the Incredible Hulk roller coaster. I wish I had taken a picture. I took one look at it, and knew I would opt out. I'm such a wimp. Justin, Alaina, Allison and Mikey went on it, though, and they loved it so much they went twice. In the meantime, Matthew and I checked out some Spider Man shops and watched some amazingly decked out characters come and go. I am so bummed out that I didn't take better pictures of them, either, because they looked like they had just walked right out of the comic books.

So, Universal Studios consists of the classic Universal Studios park, which is more about the shows and movies, and then the Islands of Adventure park is set up in zones, or "islands" with themes.

They are: Marvel Superhero Island, Toon Lagoon, Jurassic Park, The Wizarding World of Harry Potter, The Lost Continent, and Seuss Landing.

Each one is so much fun, all on its own. There is a Spiderman ride that is SO cool! It was in a car (sort of) that jiggles you around, and you can't tell if you're really moving or not. It projects the storyline onto a wall in front of you, and it's done in 3-d. They use heat, wind and even water to make the ride as realistic as possible, and they send you through a Spiderman type of story, where he saves you from the bad guys. We all loved it because it was SO COOL! It was a little bit much for Matthew - kind of scary for him. But he was okay.

In Toon Lagoon, they went on one of those water roller-coasters, and got soaked, while Matthew and I waited. That was the only one that it was hard to wait for them on, because I was SO HOT! Then, we went to the Harry Potter rides and I geeked out in a way I'll probably never be able to again. We tried butterbeer, and saw all the shops on Diagon Alley, and took pictures in front of the castle.

There was a ride that was a lot like the Spiderman ride inside of the Harry Potter castle, and that one was my favorite. It used the same techniques to immerse you, but you were flying on a broom stick, and fighting dragons, among other things. I LOVED it! I waited with Matthew as the others went on a pretty intense roller coaster there, too, and then we moved on.

There was another water ride that soaked us all, and Justin's wallet got so wet that the "people dryer" machine wouldn't accept his money - it didn't recognize the denomination when it was so wet!

I loved the Dr. Seuss island, too. It was really authentic, and Matthew was able to go on a lot more of those rides. By then, everyone was tired enough to slow down and enjoy the kid rides a little bit.

Moving on to the regular Universal Studios park was a little bit overwhelming, because we were so tired, but we found some cool stuff there. Justin and the girls (Mikey opted out) went on this ride that goes straight up for 5 stories. You get to choose your music style and it plays your music for you throughout the ride. In the meantime, the boys and I watched another parade. This one had Spongebob, and Matthew was thrilled.

We saw a show about Shrek that was fun, and went on a Despicable Me ride. On this one, there was a broken seating pod, which we sat in, so they asked us to get off the ride and wait 'til the next time. But the next time, they forgot to load one less pod, so we waited again. In the meantime, I was asking the ride operator if there was anything they'd do for Matthew in the parade because he was a Wish Kid, and he said, "No, but I will!" and he went and got these guys that were dressed up as Minions to come and play and dance with Matthew. He was nervous about them, but remembers it really clearly. He still asks Justin all the time if he's Justin's minion.

Here are some highlights from that day:





Even the garbage cans and street names are whimsical in Dr. Seuss's island.


Sneetches IN!


Waiting to get onto the Despicable Me ride.

Matthew and the Minions.

He warmed up a little bit to them...

Aaaand a hug...



Insane roller-coaster.


Okay, I AM going to geek out a LITTLE bit...


Hogwarts Castle (cue angelic choir).



Day 6: Sea World

By this point, it's safe to say people can see why we'd be exhausted! We could barely force ourselves to go anywhere. BUT we wanted to see Sea World, and what else were we going to do with our day anyway?

So, we packed up and headed to Sea World. The thing is, Sea World is almost all shows. You can't really skip a line for shows the same way you can for a ride. That presents a problem in that we had a lot of HUGE lines to wait in (remember, it was the middle of July in Orlando... it was hot, sticky and CROWDED!). Also, Sea World wouldn't let anyone skip a line if they weren't with the Wish Kid, meaning the big kids had to wait in a 2 hour line if they wanted to go on a roller coaster. So, we fizzled out on Sea World.

We did do two really cool things while we were there, though. We fed the sting rays, which was really awesome. It looks like their mouth is in the front, but it's really underneath them -- like on their belly! So, we were trying to feed their faces, and it wasn't working. Then a trainer came and showed us, and it was really cool to feel them swim over us and snatch it out of our hands.

Then we went to the dolphin show. I think that show was a highlight of the trip for all of us. Dolphins are SO COOL! They always look happy, and they are so friendly. They'll do tricks for you if they think you're going to feed them. We got to touch them and pet them and feed them. The trainer brought us extra food and showed us a lot of little extras because Matthew was a Wish Kid. It was something we'll all remember for the rest of our lives. I'm really glad we dragged our tired butts to Sea World.

After the dolphins, though, we left. We were tired. We played at Give Kids the World for the day, and enjoyed the pool and the attractions there.

Here are some highlights of Sea World:

Trying to feed their faces...


Our first peek at a dolphin...


They started showing off.


They ALWAYS look happy!


Feeding the dolphins

Dancing for a treat.


 So friendly and trusting.




Day 7: The Ocean and the trip home.

This was our last day in Florida. Our plane didn't leave until afternoon, so we decided to check out early and go see the ocean. We didn't stay long, but it was a really fun little day trip. Cleaning up was crazy! We were covered in sand and water, and we went into a grocery store bathroom to change, one or two of us at a time. We loaded the wet clothes into plastic grocery bags, shoved them in the luggage and headed for the airport.

Here are some highlights:

Look at the cruise ship in the distance!

Playing in the water.













When Matthew's treatment was at its hardest, and he felt the worst, he always asked to go back to the beach. He remembered our trip to the Oregon Coast, and he pined for the ocean. When we started talking to him about his wish, he wanted to meet Mickey, but he also very specifically wanted to walk on the beach. This picture encompasses what Matthew needed the very most during the darkest days of his little life.

Thank you Make-A-Wish. Thank you Give Kids the World. Thank you Disney World. Thank you Universal Studios. Thank you Sea World Orlando. Thank you anyone who has contributed to any child's ability to take one of these amazing trips. They are filled with the memories of a lifetime.