Tuesday, November 27, 2012

I thought I knew

Noah's oncologist told me last week that he has done remarkably well. And he has, but this last round (the last 3 weeks) has been really hard. He was back on the steroids and we seen it full throttle. The mood swings were way worse this time. He would scream at us and demand things. Throw himself into fits of rage. He was exceptionally hard on Holly and would say really mean things to her. He ate alot, but certainly not like month one. He has been up the last few nights to eat twice, and has a really hard time sleeping.

Yesterday was one of our hardest days yet. He was in alot of pain in his back. He couldn't sit stand or walk. He just rolled in his bed crying and screaming. It was awful to watch. Its so hard to see your child in pain and there's nothing you can do to take it away. I spent an hour trying to get a hold of an oncologist to tell me if I could give him morphine. He can't have tylenol or advil because it could mask a fever. And a fever is an emergency which we would then need to take him to Children's. Combined with Noah's pain, he is then screaming at me demanding that I call the doctors. Finally the Dr on call calls me back and says yes I can give him morphine. I by chance had 3 pills left over from when his second port was put in so I gave him one. But they said to give it every 2hrs to get on top of the pain so I had to call my family dr and get a prescription for more.  It took just over half an hour but the morphine started to work.

I knew this round was going to be hard. They told us it would be, they told us to expect it. But even if you think you are prepared for a rough road, nothing prepares you to see your child sick and in pain. Its excruciating to watch.

As I was rubbing his head, trying to console him, I looked at my hand and it was full of his hair. Again something we have been preparing for but is hard when it happens. Chris shaved alot off his head last night, and its now very thin. It won't be long before its gone. It was easy to 'forget' that Noah was sick. He didn't look sick. He didn't really act sick. He was mostly able to go to school and play hockey. But not anymore. Hockey will hopefully resume in the new year. But for now, its hard to get him off the couch. With his hair going, its easier to see the sickness. To recognize it. And for others too.

Right now his counts are low, but hopefully they will build back up by next week. If they are up, he will be admitted Tuesday December 4th for one night. They will administer a new chemo drug that he has never had, and keep him over night on IV. Then on Wednesday Dec 5 he will be put to sleep for a spinal. I think then we will be given another chemo drug that we give everyday orally at home for a month. IF he is on track. Normally, kids need more than this one week break between the steroids. Some need 3 weeks. Pray that Noah can stay on track and be able to continue treatment with no delays. Its not the end of the world if its delayed, but it would be nice to have this phase over with.

Please pray that Noah will be well for Christmas. That we can be with our family like always. I feel like  some things in life become more serious when you have a seriously ill child, and other things need to be taken more lightly. There is so much we are learning in this process. Its changing all of us, our families, friends.

Other prayer requests: Coltan has been diagnosed with having a CCAM (congenital cystic adenomatoid malformation) combined with low bar emphazema. Nothing to worry about now, but if symptoms arise we may need to do surgery to remove the malformed part of his lung. Most children with this need surgery at some point.  And Holly is taking the brunt of Noah's moods. She handles it well, but she is a girl and her feelings get hurt very easily. She does seem to have a good understanding of the medications and that that's what makes Noah so mean.

Please pray for strength for Chris and I. Its hard to see our children be ill. To have words like chemo, survival rates, and surgery be part of our daily vocabulary.

Thank you for all your support. We feel your prayers everyday. Without them we couldn't function as we do. On a side note, we have been given the date for Noah's LAST chemo treatment. September 11, 2015.


Thursday, November 8, 2012

something to pray for

I thought I would post a list of the side effects that the chemo drugs Noah is currently on can cause. Then we can request specific prayer for those things.

Drug: Dexamethasone
Side Effects: moodiness, extreme irritability to rage. Increased appetite and food obsessions. Increased thirst, indigestion, weight gain, fluid retention. Round face and protruding belly, sleeplessness, nightmares, nervousness, restlessness, hyperactivity. Loss of potassium, loss of bone mass. Hypersensitivity to lights, sound and motion. Decreased or blurred vision, seeing halos around lights, sweating, weakness, muscle cramps or pain, swelling of feet and lower legs, high blood pressure, high blood sugar, and hallucinations.

Drug: Ondansetron
Side Effects: headache, diarrhea, constipation

Drug: Vincristine
Side Effects: severe constipation, pain in jaw/face/back/joints/bones. Foot drop, numbness/tingling or pain in fingers or toes. Extreme weakness and loss of muscle mass. Drooping eyelids, hair loss, pain blisters and skin loss. Headaches, dizziness, seizures, paralysis.

Drug: Doxorubicin
Side Effects: low blood counts which may increase the risk of infection or bleeding and cause weakness, fatigue and paleness. Nausea and vomiting, hair loss, mouth sores. Loss of appetite, diarrhea, heart damage, shortness of breath, fever and chills, abdominal pain, dark or bloody stools, darkening or ridging of nails.

Drug: Asparaginase
Side Effects: Loss of appetite and weight, fatigue, headaches, abdominal cramps, nausea and vomiting. Allergic reaction, jaundice, confusion or hallucinations, convulsions, swelling of feet or legs, frequent urination, high blood pressure, kidney or liver damage, stroke, inflammation of the pancreas, excessive bleeding, blood clots.

Drug: Septra
Side Effects: stomach upset, skin rashes, sun sensitivity, low blood counts.

These are all the drugs that Noah is currently on. Below is a quote from the cancer book the hospital gave us. Its from a parent of a child with leukemia. It explains very well what I experience daily.

"Sometimes I would feel incredible waves of absolute terror wash over me. The kind of fear that causes your breathing to become difficult and your heart to beat faster. While I would be consciously aware of what was happening, there was nothing I could do to stop it. It's happened sometimes very late at night, when I'm lying in bed, staring off into the darkness. It's so intense that for a brief moment, I try to comfort myself by thinking that it can't be real, because it's just too horrible. During those moments, these thoughts only offer a second or two of comfort. Then I become aware of just how wide my eyes are opened in the darkness."

It's so hard to write exactly how I am feeling. To know that we have to inject his little body with these drugs that cause these horrible effects. To know that the alternative is surely death. People will say to me all the time that I am so strong and doing a good job. That if anyone could handle this, it would be me. But the truth is that anyone can do this. I have no choice. This is our life. There is no alternative. You would do the same. I'm just a mom of a child with cancer trying to survive it too.

Monday, November 5, 2012

A day in the life

Just thought I would send a quick update. Noah is doing well. He started hockey, but he doesn't always feel up to going. He's such a little man, so he won't tell you if he's not feeling well, he instead just shrugs his shoulders, mumbles something after I ask him what the matter is, and doesn't give us a real indication why he doesn't always want to play. My best guess is that his counts are dropping and his body is just feeling tired and not doing what he is used to it doing. So, we have hockey tonight, and we will see how it goes. Tomorrow is just a check up at cancer clinic and Wednesday he is put to sleep for another spinal. Which he doesn't mind. He likes the sleep part. Which is nice. Today he had a blood test and freaked out. He just had it  done in the cancer care clinic in Steinbach, and so I get that they aren't use to children (sorry my font changed and I have no idea how to change it back!) but it was a little frustrating. He was suppose to have a finger poke, and so that is what I prepared him for. But the lab tech wanted to do an arm poke. So Noah became very upset and hid his arms and refused to let them touch him. I had to strongly encourage him that it would be fine, that he has had like a hundred arm pokes but it was no use. Finally the lab tech just did a finger poke. Its hard to see him feel so scared. I found myself feeling mad and frustrated and very done with all the procedures that he has had and will have. And then knowing that we aren't done. Not even close to being done with it all. Knowing how much more he will have to endure became very overwhelming.

Its more now too because Coltan will have to have a CT scan for is malformed lung. The doctors called today and told us they changed their minds and that Coltan needs it done within a month. He will be sedated, have a breathing tube inserted and have them breathe for him. Then in recovery for awhile. Its all so overwhelming. To look at my children and see them go through these procedures can be too much to take in some days. Today is that day where I feel very done with it all. I just want healthy children. I don't want to take them to the hospital anymore. I want to know that they will be just fine.

There are just days when it all feels too much. Today is a day like that. But I have no choice. I can't hide under my blankets and sleep away the day. I can't go to the mall and get lost for awhile. I have three children that all need me.  But some days that's what I feel like doing. Disappear for a bit. Go to the store and not run into someone I know. Hide out until things settle. 

So if I can't do those things, I then will pray. It sounds so like the 'right' thing to do. Or what everyone tells you to do. But truthfully, it the ONLY thing to do. I can't heal my children. I have no power to do that. There is nothing I can do to take this all away. So praying is the only answer. And when God calls me to my knees, I will do it.

Our prayer requests: Complete healing for Noah. That his cancer will be cured and never return. That he will learn to cope with all the procedures yet to come. That the side effects of the chemo will be non existant. Prayer for Coltan. That when they do the CT scan, they find only healthy little lungs with no cysts, no malformations, and that cancer will never invade his body. For Holly. She feels the stress too in her own way.