Maintenance

Well, we made it. Out of a very long, dark tunnel. And into a longer, but maybe less dark tunnel. It'll take time to know how we all adjust. I've seen some kids do fantastic with it, and some who really struggle, even more than they did during the other phases. We are still in active treatment, it's just different now. Mostly done at home.

The Pros:

• He only has to go in once a month, unless he is having problems. He doesn't have to have his Port accessed any other time - so only one poke a month, as long as all is well.
  
• Only one lumbar puncture every 3 months, plus we talked to his doctor about a different method of sedation, which would put him out enough to do the procedure without using general anesthesia. It would also mean we can be in the room when they do the lumbar punctures, which I think I would like better. They also come out of it better this way.
  
• In the near future, we should be able to count on a relatively steady ANC of 1000 (this is still immune suppressed, but he would at least be able to fight off his own body's bacteria). This means he'll be able to go to church again, and possibly preschool or daycare. Also, we can travel this summer.
  

The Cons:

• He has to take pills every single day for the rest of treatment, which we found out yesterday will end in September of 2014. A month sooner than I thought.
  
• 5 days a month, he'll take steroids. This is also going to continue through all of Maintenance - until September of 2014. I know I've said before how much I hate steroids. He started them last night, and already, he's crabby and emotional. It's going to be a long week.
• On Thursdays, he'll take an additional medicine, and has to take 6 pills to get his dose. This means that on the Thursdays that are also steroid days, he will take 10 pills.
  
• He will only get a CBC once a month, which will make me a basket case because I'll never know his ANC. I'm going to have to learn to trust that he's okay, unless I have reason to believe that he's not. That's easier said than done when your child is being treated for cancer.

So, here are the specifics, for those of you who want details. He is on a study for his treatment. By participating in a study, you get the most current treatment available. For Matthew's study, they left almost everything alone, so the kids receive the current standard treatment plan. The exceptions are that during Induction (that was the very first 28 days), they give some extra blood and extra bone marrow for scientists to study, and then during Maintenance they took the standard treatment and tweaked it with a little bit more of each medicine and a little bit less to see if they could get a better cure rate with those little tweaks, or if they could do without some of the harsher drugs to lessen side-effects. Each child who participates in the study is randomized among four arms of treatment; A,B,C, or D. You don't know how you've randomized until the day you start Maintenance, even though you agree to it before you start treatment. You have to agree to it again before they randomize you.

So, we had some long-awaited news yesterday. Matthew randomized on Arm A for his study. Arm A is the current standard protocol. Tried and true - this is the one they know works. I feel good about it. At one point in time, I hoped he'd get one where they had tweaked the medicine to be higher doses, but I've seen some kids struggling with it. So, from a quality of life perspective, I feel better about this.

About a month ago, I couldn't handle the pressure of this upcoming stress, and I finally laid it at the Lord's feet, which I should have done months sooner. I asked Him to make sure Matthew got into the arm of the study that would be best for him, and then I let go of my worry about it. I feel like that was the right thing to do, and I feel like Arm A is really, truly where Matthew is supposed to be.

The following is copied from the paperwork they gave me yesterday: "The purpose of Maintenance phase therapy is to try to keep the Leukemia from coming back. Each Maintenance cycle will last 12 weeks (84 days) and is repeated until 2 years from the start of Interim Maintenance I for girls and 3 years from the start of Interim Maintenance I for boys."

His doctor explained to us yesterday that early in Leukemia treatment, they found that they could get rid of the cancer quickly, but without continued treatment, it would just come right back. So, each phase of treatment was developed, and has been fine tuned over many years, to prevent the return of the Leukemia cells. As I understand it, the 4 phases of treatment that Matthew has been through since he achieved remission were necessary because the bones needed to be "reset." They needed to be retrained to make good blood again. The Maintenance phase of treatment, however, is more about preventing the return of the cancer. They target what she called "sanctuary sites" to be sure there are no lingering cancer cells lying in wait. If there were cells in his spinal fluid or his testicles, he would relapse. They have found that boys often relapse because the testicles are such a strong sanctuary site, so boys are in treatment to prevent that for a year longer. Most relapses happen near the end of Maintenance, or just after the child has gone off treatment all together.

Relapse is the scariest word I know. It is totally the stuff of my nightmares.

Anyway, on Arm A, the treatment is as follows:

• His treatment will be done in "courses" of 84 days, followed by a break for count recovery. To start the next course, he will need to have at least an ANC of 750, and cannot have any current major illnesses (RSV, Flu, Chicken Pox, etc...).
  
• On day 1 of each course, he will have a lumbar puncture done, and they will inject Methotrexate into his spinal fluid.
  
• Once every four weeks, he will have a check up with his doctor, and he will receive an IV dose of Vincristine.
  
• For five days out of every 4 weeks, he will take Dexamethasone (a high dose of steroids). This will be done in conjunction with the Vincristine. They work best together. When he takes this drug, it will be 2 doses a day. 2.5 mg in the morning, and 2 mg at night.
  
• Every Monday and Tuesday, he will take Septra, morning and night. This is the antibiotic he has been taking all along, which prevents a very specific type of pneumonia often seen in immune suppressed people. He will continue taking Septra for 3 months after the end of his treatment.
• Every day, he will take Mercaptopurine, which is called 6MP for short. This is in the form of a pill, which needs to be taken on an empty stomach and without dairy products. This medicine is dosed based on Matthew's height and weight. They started him out on what they call 100% of his dose. If his ANC holds steady at 1000, he will stay on the 100% 6MP dose. If the ANC tanks (which seems to be fairly common), they will reduce his 6MP to a 50% dose until his counts recover, and then work their way back up to 100% over time, if possible. The goal is to always have an ANC of 1000. If it stays too high, he'll get more 6MP. If it stays too low, they'll have to permanently adjust it lower, although it will change over time, as his height and weight increase with age.
  
• Every Thursday, he will take 6 Methotrexate pills, equaling 15 mg. These could possibly cause the side-effect of mouth sores, which are far more painful than they sound. They are easily the most painful part of ALL treatment, and often kids get put onto a Morphine drip to manage the pain, and end up being fed through a tube because they won't even open their mouths. Luckily, Matthew has never had mouth sores, even with the much higher doses of Methotrexate he has received via IV. The Pharmacist told me yesterday that Septra and Methotrexate combined can build up in your system, causing side effects over time. At the time, I was thinking of skin problems, which I've seen a lot of kids go through, but I bet mouth sores are another possibility. I hope and pray that sweet Matthew never has to go through it.

So, as you can see, this course of treatment is still hard. I know I've made it sound like it's going to be this huge relief, and in many ways it will, but Matthew is still in active treatment, for sure. It will be wonderful to have fewer visits. We'll have so much more time to do the things we want and need to do. I'm looking forward to tons of time outside this summer - at the park, on play dates, taking walks. I just want to get him out of this house!

I hope we settle into this next "new normal" quickly, and get on with our lives. Once again, thank you all for the amazing support you provide. We feel lifted and carried by all the prayers.