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Wednesday, February 29, 2012

Maintenance, Here We Come!

Well, yesterday was Matthew's last chemo before Maintenance. Although it feels rather anti-climactic, it really is something to celebrate. I hesitate to get my hopes up because the first few months of Maintenance can still be pretty rough - in some cases even rougher than some of the phases. But this is the beginning of the end. A really LOOOOONG end (from now until October, 2014, to be exact), but the last phase nonetheless.

This is what we've been looking forward to. This was the light at the end of the very, very dark tunnel. Now, we'll have a new, less dark tunnel to get through. But we're looking forward to the positive changes we'll be able to make.

I grilled Matthew's doctor for a long, long time yesterday. He sort of has two doctors. His main doctor, Dr. Afify who is a certified oncologist, and his Fellow - which is sort of like a student doctor, but not quite the same. She has finished all of her college, and has done a residency in pediatrics, but to work in such a highly specialized field, like oncology, you have to then go through a fellowship, which is three years. Her name is Dr. Jensen. I will always have a soft place for both of them in my heart. They saved my baby's life. We see a lot of different oncologist when we go in, because Dr. Afify is only in the clinic on certain days - some days she works in ICS (the immune compromised unit) instead. And she also travels quite a lot. But we almost never go without seeing Dr. Jensen. Not every patient has both an oncologist and a fellow assigned to them. I feel very lucky that we do.

I love Dr. Afify and her deep wells of knowledge and experience with pediatric cancer. She has worked in this field for many years, and in more than one country, which I believe gives her a unique perspective. And I love Dr. Jensen because she's so new to oncology in particular, and she's passionate, and she studies like crazy. She studies Matthew like crazy.

Yesterday, we saw Dr. Jensen, but not Dr. Afify. We saw another oncologist, who I was familiar with, but whose name I can't remember. He's a nice guy, and smart. I remember him from other appointments. But We only talked for a few minutes, because I had already discussed everything I needed to discuss with Dr. Jensen.

I had a long, and much needed talk with Dr. Jensen. My appreciation for her was increased, if that's possible. She is a fountain of knowledge, and she is committed to doing this to make a difference with her life. It occurred to me yesterday that in such a specialized field, you can't really decide where you want to live and then look for a job. You find a job and then move there. She told me she hopes to stay in the Western US because that's where her family is. What a strong person to leave her family like that, and go where the fellowship presented itself for work she feels passionately about. Especially knowing she might never be able to "go home" again.

Anyway, I totally digress. Suffice it to say I'm super grateful for the sacrifices that doctors make so that they can care for my child.

Dr. Jensen told me yesterday (not for the first time) that she has a soft spot in her heart for Matthew. She said that he was one of her first cancer patients. I appreciate the love she feels for him. It makes me feel like we have someone extra fighting for him. Our talk was great. She answered a ton of my questions yesterday, and she calmed a ton of my fears.

Here's the lowdown on what I could glean about what's coming next.

His next appointment is scheduled for two weeks from yesterday (March 13). She isn't necessarily expecting him to be ready to start Maintenance at that point, though, because his counts are trending down right now, and since his dose of chemo was bumped up, that will contribute to driving the counts down. It'll probably take him a few weeks to recover, which is what they expect. So, we'll have Home Health get CBC every Monday until his ANC reaches 750 (it was 1000 yesterday - it will go down before it goes back up).

When he comes for his first appointment, he will get IV Vincristine (I think..) and IT (Intrathecal - in the spinal fluid) Methotrexate. Then he'll start taking Dexamathasone (steroids) for the following five days, along with 6MP pills daily and Methotrexate pills on the weekends (I think that's how it works, anyway...). This is where he will be joining a study. They are testing to see what tweaking doses during Maintenance does for the survival rates. Hoping to find ways to either up the rates or decrease the meds. It's a pretty new study, but I have at least three friends in the mom's group whose kids are already on it. There are four arms on the study, and I don't fully understand them all, but one of them is the current standard protocol, two of them add extra doses of certain drugs, and one of them has fewer IV and IT chemo treatments - and maybe fewer steroid pulses, I'm not totally sure. They choose your arm at random. Like a lottery. They call it randomization. We'll find out how Matthew randomizes at our next appointment. All of my friends so far have randomized in the most medicine category. I have mixed feelings about them all - if he gets the most meds, it feels like he has the best chances, but that might not necessarily be true. If he gets the least, Maintenance will be a lot easier on him, but it could decrease his chances - again, not necessarily. That's what they're studying. I can only pray that the Lord knows what Matthew needs, and make sure he gets the right arm of the study for him.

I asked Dr. Jensen about daycare, head start, and vacations. She said we need to give it a couple of months. He will need a few weeks right now to recover, and then stabilizing all those meds during maintenance can take a while. We'll revisit those things then.

One of the concerns that has risen up is a weird one. I don't want to sound ungrateful, but it feels like the chemo hasn't had enough effect on him. Sometimes, it's like he barely notices it happened. He never throws up from it. His counts are usually surprisingly good. When he fights off an illness, his body raises his ANC on its own and he is able to fight it off on his own. I know it's weird to be concerned about that, but it feels like maybe it isn't effective enough. Other kids get a lot sicker from this stuff, and spend a lot more time in the hospital. In comparison, it sometimes feels like Matthew is barely fazed. Maybe he isn't getting enough, or something... you know? Anyway, Dr. Jensen said that this could be a concern, and sometimes it is, but they study Matthew's blood often. They check something called a differential, which tells them how mature or immature his white blood cells are. This made her confident that he's okay. I don't fully understand that, but I do trust her, and she knew what she was saying. It sounded like she had already addressed the concern for her own knowledge, and she knew Matthew's blood was okay.

Another thing that's been tough has been Matthew's bone pain and fevers. It seems like he has a low-grade fever every day. 99.5-ish. This was also true before he was diagnosed. He had a fever every day for a month. So it scares me a little. She said that then and now, his body probably elevates its temperature when it's working hard. It's nothing to worry about unless we start to see other symptoms accompanying the ongoing low-grade fever.

I asked her when he'll have another bone marrow aspirate, and she said he won't unless there's a reason to suspect the cancer may have returned. I was surprised they don't check it throughout treatment. But, the last time he had one was August, when they declared him in remission. Everything else after that is about "resetting the bone marrow." That means I need to really learn to just have faith in the process. That's hard, but I can do it.

So, sorry for the information overload! We have so much support, and I really appreciate everyone for all the good thoughts and prayers.

For now, it looks like it'll be a few weeks of our favorite game, Hurry Up And Wait.

Tuesday, February 21, 2012

Sleepless Nights

I think the end of each phase of treatment becomes really hard on Matthew - and therefore all of us. It seems like with each phase, the effects of the chemo build more and more upon each other and before they are allowed to wear off, there's more chemo. In addition to that, his current phase involves escalating doses - higher each time we go in. So, I think it's getting to him.

He's had 4 appointments in this phase, and will have one more next Tuesday. Then he'll get a break before we move on to Maintenance.

He's getting to the point where I can tell all that build up is getting hard on him. He tries so hard to play all day, but by afternoon, he's always so worn out, and he gets super grouchy and whiny. Sunday, Justin made him lay down and watch a movie. It was the best move he could have made. Matthew isn't used to needing rest like that, but the truth is that he needs it. He may seem to be handling this like a rock star, but he still has cancer, and it's harder on his little body than he wants to admit.

He's losing weight again, which always concerns me. I'm lucky if I can get him to eat 1,000 calories in a day - it's usually more like 5-800. He's looking pretty thin, but not emaciated yet. I'm hoping his appetite and weight will bounce back during his upcoming break.

He has leg pain, and pain at the top of his feet. I've had to give him pain medicine more regularly than I like. But the most important thing is to help him stay comfortable.

He's been sleeping in our bed at night. He goes to sleep in his bed, and then joins us later in the night. He tosses and turns a lot. Sometimes almost violently. The other night, he was whimpering in his sleep, and I couldn't get him to answer me when I asked if he was in pain. I just gave him the pain medicine, hoping it would help him. When he finally settled down, I couldn't sleep. There are always so many scary thoughts going through my head. I just laid there and rubbed his head for a long time. Eventually, I drifted off to sleep again, but it was much, much later. The last few nights have been like this, but that one was the worst. Matthew, Justin and I are all really tired this week. I'm anxious for this phase to be over with, yet I'm still nervous about Maintenance.

One more week to go. We're now counting it down in days.

Thursday, February 16, 2012

So Many Organizations!

I spent some time this morning and signed my kids up for different organizations that will help them. It's so wonderful that there are so many different organizations out there that want to help our family in different ways.

Most of you already know that we're members of Hope Kids. Hope Kids is an amazing organization that gives family's fun outings to do on a regular basis. They told me that Justin and I can use it for Date Night, Alaina and Allison could go to an activity just to get out. We could do Daddy Daughter Dates, or Mommy Son Dates, or the whole family. However we want to mix it up. It's for the whole family, because cancer affects us all. My sweet friend has a son who is fed through a tube. He has a lot of physiological issues that prevent him from eating normally, and also his lungs aspirate often, putting him at risk for pneumonia. She is also a member of Hope Kids, and we decided the other night that we could also use it for a girls night out. I totally love Hope Kids. A lot.

Today, I signed Mikey, Allison and Alaina up for Supersibs. Through Supersibs, my kids will get special packages in the mail. They will be recognized for what Matthew's cancer has put them through. I loved this quote from their website:

The brothers and sisters of children with cancer are truly the “shadow survivors”. Though they do not experience cancer directly, they are impacted in ways that drastically change their lives. Their struggle has been largely unrecognized and unsupported – grief from the loss of childhood as they knew it, loss of routine, affected friendships, a new definition of “normal”.

Bravo, Supersibs. I couldn't have said it better myself. I can't wait to see what they send to my 3 little warriors.

The most exciting phone call I made, though, today was to Make A Wish. Matthew is signed up now to Make A Wish, and they'll grant it. It's a really big deal. He is thinking he wants to wish for a trip to Disney World (to meet Mickey Mouse on the beach =)), but we'll see what happens when he understands his options a little bit better. In the meantime, they treat the kids like royalty. They have parties a few times a year, and they do all sorts of things to honor them. He gets to make his wish in the Wishing Place, which is a building designed to make the act of making his wish as magical as possible. The spaces inside are filled with stars, and colors, and child-like magical settings. To read more about it, click here. On the left side of that page, you can see more options to see what there is inside.

Each child who makes a wish leaves a star behind. It's a beautiful legacy binding us together as families who have something awful, yet powerful in common. I'm fighting tears just thinking about it. I can't wait for him to experience all that Make A Wish has to offer.

One thing is for sure, we needed a little bit of uplifting this week. I'm so glad these things are out there to help us. You really don't understand how much this kind of a daily grind can wear on you until you're in the thick of it. These kinds of things are the best way to blow off some steam! I can't wait to see what Matthew's wish is!

Wednesday, February 15, 2012

The Smell of a Child's Hair

Not long after Matthew was diagnosed, I started to map out when he would lose his hair. It's probably the most outwardly obvious side-effect of cancer treatment, and coming into this world from the outside, it's the one you think of first - followed at a very close second by vomiting.

Interestingly enough, Matthew only got that sick to his stomach for 3 weeks of his treatment. The doxorubicin weeks. Those were awful.

But he lost his hair twice. The first time was about 5 weeks after his diagnosis. I remember cuddling up to him one day and smelling his hair. I was sad that he would be losing it, not because of appearances, but because I love the smell of his hair. All of my kids have their own hair smell. It's always a comfort to me. I remember that moment crystal clear. I realized I wouldn't have that comfort through this nightmare, and wondered how I could possibly do without it.

Maybe that sounds stupid, because my poor boy had to go through months of baldness, which he didn't want. I just didn't struggle so much with the visible part of it, because he's a boy, and short or no hair is really kind of okay for a boy. If one of my girls had lost their hair at this age, I would have been so much more sad about the visible side of it, but with Matthew, it was all tactile for me. I loved playing with his hair, too.

It's interesting how it morphed, though. The whole time his hair was gone, I never noticed the lack of his hair-smell. In fact, I loved to rub his bald head. It reminds me of a brand new baby's head.

His hair is coming back now.

It's so dark! And it's super soft - like a brand new baby's hair.

Well, last night, I was cuddling with him, and noticed that his hair-smell is back! It was such a comfort to me! I'm glad that his bald head was comforting to me, rather than sad and scary - like I would have expected. But I'm even more glad that his hair is coming back, and it still smells the same, even though it looks and feels different.

I've heard that once the hair starts coming back people stop being careful. I can see that - because the "cancer" look goes away. It seems that will be our next "new normal." And for much longer than the current one has lasted. He'll be in treatment until at least October of 2014, and his counts will remain relatively low during that entire time. They try to always keep the ANC at 1000. So, we have to learn to trust that he will be safe, and we have to accept that it's worth the occasional stay at the hospital in order to allow him to have a life again. And we have to learn to speak up even more about hand washing and germs because when his hair comes back, people will think about it less, but he will still be at risk just as much.

But for today, I'm content enjoying the smell of my child's hair.

Saturday, February 11, 2012

Routine ER Visit

Funny, but I'm starting to understand what the routine is for Matthew when he goes to the ER. He was there Friday, very early in the morning, for a fever. I didn't realize until the next day that maybe people don't understand why a fever is such a big deal. One of my bosses said, "Can't you just give him Ibuprofen?"

I realize maybe I never explained this before. So, I'll break it down. Because Matthew's immune system is so severely compromised, he is not properly equipped to fight off an infection. Any time there is a fever, that means the body is fighting an infection. So, when he gets a fever (it has to be 100.4 for at least an hour, or anything over 101.0) we take him up to the ER and he gets IV antibiotics, along with fluids. The dose of IV antibiotics is good for 24 hours.

Even if he doesn't have a fever, Tylenol and Ibuprofen are off limits all the time. The reason is that they can mask a fever, and since he can't fight infection like the rest of us, we need to know as soon as possible when he's fighting an infection. A masked fever could mean a costly delay in treating infection, and infection is the leading complication for Leukemia patients. It can be deadly.

So, we take fevers very seriously. And we take the no-Tylenol-no-Ibuprofen rule very seriously.

But back to the routine ER visit. I realize that sounds like a bit of an oxymoron, but I speak the truth. 3 times, we've done this now. Once Matthew has a qualifying fever (see above), I call the on call oncologist (say that 3 times fast) and let them know. They tell us to go to the ER, and they call the ER and let them know we're coming. While we drive, they are cleaning and sanitizing a triage room so that Matthew won't have to wait in the waiting room with kids who potentially have contagious illnesses. He comes in wearing a heavy duty mask on his face, and we sanitize our hands. They check us in right there at the desk, and then they take us back to the triage room. If there is a super long wait, this is where we will wait. It's our version of a waiting room.

Once they have taken Matthew's weight and vital signs, they move us to a regular ER room. Here, we always, without fail, become a teaching case. The resident and attending doctors come in, sometimes separately, and tell us the same thing - that they will take a CBC, give him IV antibiotics and fluids, and if his ANC is below 500, they'll admit him but if it's over 500, they'll send us home. Our nurse is always nervous, and her hands always shake as she accesses his port. (Friday it took 3 pokes. I was about to ask for another nurse) I am usually patient with this because I understand most nurses don't access a port on a regular basis. But sometimes, it becomes bothersome, to say the least. Once his port is accessed, they draw enough blood for his lab work (a CBC, and blood culture - plus one other, I think, that checks things like electrolytes and liver function). Then they hook him up to IV fluids and antibiotics. They always start with Rocephin. They told me once that it covers a lot of the likely culprits for his fevers, so they like to use that first.

Then we wait. For like an hour or two.

When they get the CBC results back, if the ANC is high enough, they send us home. It's always been high enough, but once it was borderline, and they let us decide. We opted to go home.

Once we go home, we are told that we can break the cardinal rule and give him Tylenol to treat his fever for the next 24 hours, because they have a documented fever and he has been given a 24 hour dose of antibiotics.

After the 24 hours has passed, if a qualifying fever returns, we have to start that process all over again. The second time, he's more likely to be admitted, though. We have never had a second time.

I always wonder what exactly causes the fevers. Sometimes, I think it's just how his body is reacting to the poison we regularly put into it. But, maybe it really is some kind of infection, and the Rocephin zaps it. I guess I'll never really know. I just thank heavens every time that it isn't something more severe. Saturday night, a friend of mine had her son admitted for C-Diff (which is AWFUL!) and a blood infection. These poor kids go through so much!

Matthew seems to be feeling better now. Friday, his fever came and went all day long, and I gave him the Tylenol so he'd be comfortable. Saturday, the fever was still there, but it was low enough to stay off the PCMC radar. It stayed between 99.5 - 100.1. It does that a LOT. Now, the fever is gone. Good riddance.

Last night, though, Matthew woke up with pretty bad bone pain. I always worry about it because there are some lasting effects that can exhibit this way. Vincristine (one of his main drugs) can cause a condition called foot drop. It's a form of neuropathy that makes it hard to control your feet. Sometimes the kids will fall down, or walk on their tippy toes from it. They put the kids into physical therapy for that. It hurts a lot, but is correctable. Still, whenever his ankles hurt (which is where the majority of his pain is) I worry about it. No need to go through any extra pain. You know? But there's also a condition called AVN (I don't know the full name, but the V stands for Vascular and the N stands for Necrosis, which means death). It's a death of the bones, if I understand it correctly, and it cannot be corrected. It causes pain for the rest of your life - again if I understand it correctly. I'm asking a lot of questions about it today, because of Matthew's pain. I doubt that is it for him, though, because it's caused by steroids, which he hasn't taken since November.

The bone pain is another one of those things that I stress over. Like fevers, there's a really broad spectrum of what could be causing it. And I think the chemo itself causes it. So, I struggle with whether or not to make an issue of it with the doctors. I don't want to overreact. It could mean more medicine, which he may not even need. But I don't want to underreact, because I want to get him help if he needs it, as soon as possible.

All in all, though, he's hanging in there this week. I think I've noticed that each phase gets a little worse with each appointment, and then when he has a break, he gets feeling better again. He has two more doctors appointments during this phase of treatment, and then we move on to Maintenance. I'm excited and scared all at once. Excited because he will only have to go to the doctors once a month, but scared because doctors will only check on him once a month.

In other news, the nurse said she will make sure he gets nominated for Make A Wish during our last appointment. I'm excited that he'll get that opportunity!

The stressful news of the week is the shortage of Methotrexate, which is one of the main drugs used in Matthew's treatment. It's used to prevent the spread of his cancer cells into his spinal fluid, which would quickly spread it to his entire central nervous system, including his brain. It's also used to slow the growth of white blood cells, which is where his cancer is at. Since white blood cells grow so fast, having a delay in his Methotrexate doses could mean relapse. We're praying they sort it out quickly. Right now, the clinic says they have enough of it stockpiled that they don't believe they will run out.

Also, back to my bald barbie post, which was about a month ago. I found out this morning that the makers of Bratz are making a True Hope doll , which is set to be released in July of 2012. They will donate a portion of the proceeds to a children's cancer research hospital in California. I'm really glad to see it. I think it's the start of something that could make a big difference in these kids' lives.

Monday, February 6, 2012

Updated Counts

I got the call from the clinic. Matthew's counts are getting low-ish, but he doesn't need blood, and he isn't neutropenic. What a relief! As long as his fever stays down, we won't have to go in, and if his fever goes up, he may get out without being admitted.

Here are his counts:

White Blood Cells: 2.4
Hematocrit: 30.9
Platelets: 367
ANC: 800

He's on for chemo tomorrow.

Touch and Go

Things are a little bit touch and go with Matthew right now, and I thought I'd update, in case I don't get a chance to later.

Matthew is right smack in the middle of the 4 doses of IV chemo he'll receive during this round, and he's been looking pretty pale for the last few days. He's also tired and emotional. I think he needs another red blood transfusion, and the home health nurse who came out this morning agrees with me. She thinks he's also probably neutropenic. If so, he won't get his scheduled chemo for tomorrow, because it's count dependant. I'm not sure if that means they'll wait until Friday (which is what they did during IM 1) or if they'll just give him a smaller dose tomorrow (which is what the nurse told me about how this phase, IM 2, works when he was giving me road map details just before we started).

The other issue, though, is that he has a fever just above 100 degrees. My book says to call the clinic if a fever of 100 lasts more than an hour, but I've heard from a lot of moms that the clinic won't see him unless it's 100.6 or higher for more than an hour, or 101 for any length of time. So, I think it's likely that I'll be heading up to Primary's with him today, but it's possible I'll just be watching him closely and talking on the phone with his doctors.

If he does go up there for fever, and if the nurse is right about neutropenia, he'll be admitted, because they always admit if both fever and neutropenia are present.

So, we may be spending the night - or even the week if there's something wrong - at Primary's.

The nurse that came out today took blood for a CBC, and I'll have the results of that this afternoon. I'll keep updates coming as I have more information.

Thanks for keeping us in your prayers. At times like this, we really need it.

Friday, February 3, 2012

Hurry Up And Wait

Just thought I aught to get on and update, because it's been a little while.

Matthew's doing pretty well. I think he feels pretty good, and that makes him a little bit stir crazy. He's sick of being stuck at home all the time. This phase of treatment has been relatively good, and I was nervous about it, so it's a pleasant surprise. His last chemo was one week ago, today, and he had another one ten days before that. He has shown almost no symptoms, which I think is pretty amazing. I say almost no symptoms because for the last few days, he's had some leg pain, and I think he's pretty achy all over. He doesn't know how to express that, but he just gets progressively more grouchy each day, and you can just tell he's more tired than usual. But you could never convince him that he needs a nap! I've been giving him pain medicine pretty regularly to get him through.

While I hate giving him pain medicine, I think he's gotten through this experience relatively well in that department. He's only had to get a new prescription for it twice. So each bottle lasts him more than two months. You always hear how painful it is to endure cancer treatment, and so I expected worse. Either he isn't having as much pain as I would expect, or he has a high tolerance for it. Or he doesn't know how to communicate it very well - although he has learned when to ask for it. He calls it "ouchie medicine."

I'm starting to look at some of the realities of Maintenance. It's coming up soon. Only about another 5 or 6 weeks. I can't wait to see how he randomizes. It's hard not to be able to plan ahead, even a little bit.

Here's what I've figured out recently, though:

1) I kind of thought I would be able to return to work full time when he hit Maintenance, because he would be allowed to go to school if he was old enough, so I figured he would probably also be allowed to go to daycare. But, as I've watched other kids reach this point, I've seen that most of them don't go to school as much as a regular student would. They miss a LOT of time still. Counts still jump up and down through all of Maintenance, and they are neutropenic sometimes. They still get hospitalized for infections or serious illnesses (pneumonia, RSV, etc..). So, I don't think I would be able to rely on his ability to go to daycare enough to send him there when I go to work. It would make me too unreliable of an employee. (PS, I cannot fathom how single parents do this!)

So, I've been exploring the avenue of getting him into Head Start. A few people I've talked to think they'll give him an IEP (Individual Education Plan - which is for kids with special needs). With an IEP, I guess he's pretty much guaranteed a spot in Head Start. Head Start would be really good because it would get him some social interaction, and some pre-school learning (although he's already pretty advanced - it's still good to keep his brain active), and it's good because it's free. Maybe while he's at Head Start, I could find some other way of bringing in income that isn't as rigid as a full time job. Or, maybe I could use that time to work out and run errands! Sounds heavenly to me.

2) I'm scared to go a month at a time without a CBC. That means he'll be neutropenic sometimes without any kind of warning.

It's funny how a short time in life can change so much. When Matthew first got the infection in his cheek, the ER doctor was considering giving him IV antibiotics, and I totally balked at it. The thought of someone putting a needle into Matthew was hard enough, but an IV? I was relieved when she decided not to do it. In hindsight, it probably would have done a lot better to control the infection, but maybe it would have made the cancer harder to diagnose. In the end, that infection that just wouldn't go away was what led them to look at his blood and then his bone marrow.

Now, less than 8 months later, I'm totally afraid to go a whole month without someone drawing his blood to look at it under a microscope. It feels like I'll be walking around in the dark.

3) Although, it feels like we'll start to get our lives back, it's a little bit scary. Again, like walking around in the dark. I don't know the long term effects this will have on our family, as a whole. It feels like soon, we'll be dealing with aftermath. It's exhilarating, but a little bit scary. I hope we don't have too many pent up emotions.

On a MUCH brighter note, though, I just called Make-A-Wish to nominate Matthew to be a Wish Kid. That means he can wish for anything he wants. He wants to meet Mickey Mouse on the beach, which translates to Disney World. I hope they can grant him that wish! All of my kids deserve something like that this summer, don't you think?