The first side effect we noticed was his mood swings. That started with the first dose. In the hospital, we had to make him take his medicine, and he hit himself in the head and said, "I hate this!" That was hard on us, to see such an abrupt change in his personality. Soon, we realized that he has windows of time when he's himself again. He usually takes that time to apologize for being mean, which breaks your heart even more. He has enough to deal with without adding guilt.
When we got home from the hospital, we were calorie packing (sneaking extra calories into his food whenever possible by doing things like adding extra butter, and using whole milk), because the nutritionist said he needed to gain some weight. Within a couple of days, his appetite swung like a pendulum from never hungry to always hungry. It became really easy to meet his calorie count for the day. And he wanted all salty foods. Corn dogs for breakfast and such. The first nurse said to avoid sodium, but go ahead and feed him as much as he wants. All the moms in my support group said that nurse was crazy, because salt is all he wanted. So, at his doctor's appointment a few days later, I asked them, and 3 different people said to feed him what he's craving.
By now, he eats constantly. If he isn't eating, he's talking about eating. And he has imaginary cravings - he wants us to feed him foods from cartoons that don't really exist.
Because of all this eating, and because steroids cause you to retain water, which is compounded by his cravings for salty foods, Matthew has gained a lot of weight. Probably 15 pounds by now, which is really a lot for someone who started out at around 30 pounds!
So, our little boy is rather chubby right now. It's concerning when you look at him, and it's hard to see him this way, but the doctors have said repeatedly that this is to be expected, and we should keep feeding him what he wants.
His belly sticks out so far that his belly button is almost completely flat. You can see a vein in it. His ankles are swollen like mine were with my worst pregnancy. He has a double chin. He has gone up two clothing sizes.
Worse than appearances, though, is what it's done to him physically. Another side effect of the steroids is muscle atrophy, which makes your muscles weaker. He has fallen down a couple of times while just walking. He can't walk up the stairs very well, and I'm worried he'll fall down, because at least once a day, he tries. He can usually do it, although you can see that it's really hard for him, but sometimes he calls out to me to come help him. A couple of days ago, he tried to go down the stairs alone, and he fell backwards. Thank heavens he landed on his bum, and I helped him. My biggest fear for him right now is that he will tumble down the stairs.
He's uncomfortable all the time because he's so big. I equate it to the last couple of weeks of pregnancy, only worse. He's swollen all over, and he's so big he can't really move around. Just to roll over in bed takes him some serious effort. He needs help up onto the couch, the bed, and the toilet. If he's laying down, and you need him to sit up (like to take his medicine), it takes him about a minute, with lots of grunting and groaning, unless you help him.
In contrast, the side effects of the Chemo have caused some bone pain, which is easily managed with pain medicine. They have also caused some issues with his bowel movements, which are manageable too. Also, his hair is looking pretty thin, but there are no bald patches, like I hear you should see when they start losing their hair.
On the bright side, Induction ends Wednesday. The doctor said that most of Matthew's water weight will disappear in a week or two, and the food weight will come off easily, too. His moods should return to normal soon, too.
This Thursday, he will skip his usual Chemo treatment, but will be having a couple of procedures. They will do a spinal tap and withdraw spinal fluid to be tested to see if the Leukemia has reached the Central Nervous System. They will also administer Chemo (Methotrixate - I probably spelled that wrong) into his spinal fluid. The other procedure will be a bone marrow aspirate. The first one since his diagnosis. This will tell us how well his treatment is working. By Thursday, he is supposed to be in remission.
Can you believe that?! Remission. That fast.
So why, then does his treatment last for another 3 years and 2 months? The rest of that time is spent resetting his bone marrow to make healthy blood, and that's how long it takes. So, even though Matthew may be cancer free, he still has years of treatment before he's done. And the treatment will continue to cause him to be immuno-compromised.
Some of the other moms say the hardest times come after the most intense treatment is over. What happens is they get their hair back, and their blood counts start to come up a little, and you can take them out a little more. You can do things like go to sacrament meeting with a mask on, or go to family parties, if you're sure no one is sick. People see the kids and they don't look sick anymore. Their weight has been through the ringer - from super chubby like Matthew is now to undernourished with ribs showing - but it has now normalized. And people don't understand that underneath all of that healthy looking cuteness is still a battle being waged in the blood and marrow. So, they relax. They aren't so worried about germs anymore, and they may pressure you - the child's parents - to spend time around sick family members because of some special occasion or something. They also relax on hand washing and hand sanitizer. This tends to be the time when a lot of parents have to stand their ground.
I think I'm already preparing myself for that conversation with my dear, sweet mother.
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