Tuesday, November 27, 2012
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
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.
Side Effects: headache, diarrhea, constipation
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.
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.
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.
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
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.
Monday, October 22, 2012
The nurse and the hospital school teacher came to visit Noah's class and spoke to them about leukemia. I think it was well received. You could see that Noah was so excited to have her there (he really likes her), and you could see it made him feel special. The rest of the school week went really well. He didn't ask to come home at all, and went every morning without a fight. He said some of the boys played with him at recess and it sounds like things are going better.
Another 'normal' thing that has occurred is that Noah started hockey this month. He had his first practice last Thursday and loved it. You could tell he was tired, but he lasted the entire hour! He has practice again tonight and is really looking forward to it. The coach and his wife are very understanding and willing to help make this an enjoyable experience for Noah. So wonderful!
The next round of chemo starts the first week into November. I am nervous for it. He will be on the steroids again, like month one. In a way, it feels like Noah is cured. And technically he is. He is considered to be in remission right now. But because leukemia can hide, and is terribly resistant, they have to treat it for 3 - 3 1/2 years. And they have to do different combinations of drugs and timing to make sure they get it all. Steroids is a big part of it. I am afraid of the eating habits. Noah ate a full meal every 20 minutes during the first month, and gained 20 lbs. They said the weight gain may not be as severe, because he will be on the meds one week, then off one week, then on one week. But the eating will be there, and in the night. The restless sleeping, and the moodiness. Please pray that Noah will be the exception.That he wont experience these side effects like they expect him to. That he will get through this month like he has this last month, and be well.
I think alot lately about cancer. It's everywhere, and it touches everyone in some way. I asked God why this is and He hasn't answered me. Maybe He never will, maybe its not for us to know. But it bothers me. It's a horrible disease that can devour a body so quickly. Why is this so? It makes me so sad to think of all the heartache this disease has caused people. I would ask for prayer for a cure, but I believe there is a cure already. So why isn't God allowing this to happen? Just some questions rolling around in my brain. Not that I am blaming Him. Just thinking out loud.
With this next round of chemo, we most likely will see Noah lose his hair. He is very worried about this and says he will not go to school if it happens. Even though the nurse already told the class it would happen and its totally normal. He is frightened by it. Pray that he will cope well when that happens. Better yet, pray he doesn't lose his hair at all.
Prayer Requests: Complete healing for Noah. That his cancer will be cured and never return. That he will not get any infections that could cause him to get sick and be hospitalized, or even put his life at risk. That the side effects will be non existant. That he will feel normal and well and energized and happy.
Thank you for your prayer. I believe that is why Noah is doing so well. Because we asked for it in the name of Jesus and have received it.
Friday, October 5, 2012
Its so hard to see. I wish that I could take away all these hardships from him. I just want to make life as easy as I can for him through this hard time of chemo and all that goes with it. But I can't. I feel like there is nothing that I can do. I can't make kids play with him. I can't make them not make fun of him. He has been called a few names, and said that one boy even laughed at him when he found out he had cancer. I know that they are kids, but it makes me so angry to hear that my boy is being laughed at and made fun of. It's heartbreaking.
There are times when I just want to keep him home, and teach him myself. Times where I want to treat him like a kid who is dying and want him to be right next to me all the time. To protect him from ignorant and mean kids. To spend every moment with him and make sure he is happy and not feeling sad. I wish I knew what to do. I try to tell him to ask different boys to play, or to get a teacher to help him find his best friend in a different grade. But it seems like nothing is working.
So he is home this afternoon, against my better judgment (I guess). It's really hard for me. Next week he will miss most of the week because of Thanksgiving, and we have to travel to Winnipeg twice for chemo, and the other day he will miss half a day for blood work here in town. I just don't want him to slip behind the other kids and not be at the same level that they are with being able to attend school all the time. I don't know how to keep him at the same pace as all the rest.
Here we are trying to figure out our life with a child with cancer, trying to be normal. But it's so obvious that we are not. We are not normal. And it's hard to figure out how to make it all work. I just want him to be happy. To be the happy boy that he was last year, that loved going to school, was the class clown, had lots of friends and had fun.
Now he is happy when he gets to miss school and go for chemo. There is something that just isn't right about that.
Please pray for Noah to adjust better to school. To find friends. This is so different for him, he has never had a problem with friends. Pray for Chris and I that we will know how to respond when he fights and cries about school. Pray for the teachers that they will know how to handle his issues as well.
Thank you all so much,
Wednesday, September 26, 2012
It feels like things are eerily normal. Kids are fighting, Noah is in school, Holly in preschool. We are doing most of our normal activities, going to church and so on. It feels good but different in a way that I can't explain. Maybe it's that new normal that we have been trying to find for the last 2 1/2 months. This round of chemo is different too. I don't have to give him any meds at home except on the weekends. And that feels nice, but so different than what we had come to know. Now Noah is going for chemo IV every 10 days. So this week we didn't even have to drive into the city, which also felt very strange. It feels like I am managing better. I am able to cook and bake (not that I need to, our freezer is still FULL!) but as a friend of mine who is going through a cancer diagnosis in one of her children as well said; it was just nice to feel normal and cook for my family again. And it's true. It feels nice to do things that I did before Noah had cancer. It will feel so nice when we get to that place where we can be a help to others in need. The love and grace and generosity that have been shown to us has inspired me to do so for others. I look forward to that.
This time of year is my favorite time of year. I love the fall. It's this time of year that makes me think of my grandma who will be gone 4 years in January. I think of her for several reasons. She was a canner, and I remember the way her house smelled of vinegar and pickled beets and cucs. I love that smell and I had to can some beets this year just so I could smell that vinagery smell and think of her. She had cancer. It has been hard to explain to Noah and Holly about why she died and why we believe that Noah will not die from cancer. But it just reminds me of how the Lord places people and different experiences in our lives for His purpose. Grandma taught me many things while she walked this earth, and she continues to while in Heaven. God has given me amazing people in my life, all for purposes that I can't know until sometimes they are gone, or we walk a path that is so very unfamiliar.
Yes, I feel better about the diagnosis. Is it our new normal that we are getting used to, or is it the Lord working in my life, answering prayer, revealing Himself and showing me what grace and mercy is like.
Prayer requests: pray that Noah's leukemia will be completely healed and never ever return. Pray that he does well in school and wants to go (he had a bad day today). Pray that his body handles this round of chemo well without the bad side effects. Pray that Holly can deal well with our changing lifestyle, and adjust to it. Coltan is going for a CT scan soon, pray that his lung is completely healed and that he will not need surgery to remove the part that didn't develop properly.
Thank you all again for all your support,
Monday, September 17, 2012
So far we really havn't seen any side effects from the new round of chemo started last Tuesday. He complains a bit of a sore throat so hopefully that's not the sores starting. We go again on Friday Sept 21 for his next chemo treatment.
We are still seeing some negative feelings that he has towards Holly, and that's hard to deal with. He has also been disobedient for Chris and I and that's also hard. It feels different now to punish him, yet we know that we need to.
Again this week we have felt the kindness of a stranger. It is absolutely unbelievable how we have been supported. It's so overwhelming and it just brings me to tears thinking of it. I have a little more hope that I will be able to pay it forward in the future now. Until now, it was hard for me to visualize what life was going to be like. I felt so incompetent for the first couple months. Now, I feel like I am starting to get back to myself again. Starting to feel our way around what life with cancer is like. For now anyway. I know that things can change very quickly, especially with chemo. So, we take each day as it comes. I don't like to say one day at a time. That phrase is starting to bother me. It's not easy to take things one day at a time. I don't know, maybe it's just my sleep deprived brain talking crazy again.
Prayer requests: Complete healing for Noah, that he will be cured of this cancer and it will never return. That he will be nicer to Holly and more respectful of Chris and I. That I will be more patient. That the side effects will be so minimal that we don't even notice them. That Noah will be able to attend as much school as possible and able to play hockey this winter. That Holly will do well at pre-school and not feel too left out in all this. That Coltan will continue to be my sweet bestest little baby:)
Thank you all
Monday, September 10, 2012
Friday, September 7, 2012
Noah started school this week and is just loving it. He has made new friends and connected with old ones. Which is really nice seeing he is in a new school this year. But as you may know, he is scheduled for surgery on Monday Sept 10th. He is getting another port put in as the next round of chemo is alot of IV chemo. He wants one. We feel nervous. He also does not want to miss any school, and on Tuesday is a clinic visit so he will be missing those two days for sure. I just wish things were normal again. Where he could just go to school and be with his friends and worry about things only a 7 year old should worry about. Not surgery or IV's or chemo or cancer. It's hard to not ask 'why me'.
And then I have those moments where I am so thankful that we know what he has, and there is treatment for it. And that Noah seems to be responding very well to it all. There are so many blessings in the midst of this. I wish that I seen them more. They are there, but I have struggled. I have struggled to always look for them. Its easy to focus on the bad, the unknown, the future that is so uncertain with no guarantees.
Please pray that the surgery goes well, the port can stay in and heal properly this time. Pray that Noah can return to school and be as normal as he can be. And pray for us (Chris and I). Chris can see the positive very easily. I need some help in that area.
Last night as I was saying good night to Noah in his room, I lay Coltan down beside Noah and he just hugged him and said "I love you Coltan, I will always be here for you". Pray that's the case. Pray our children will all grow up and become close and strong from this experience.
Thank you all so much for all you do. We are still being offered prayer, support, food, and gifts each day. It's something words cannot describe.
Saturday, September 1, 2012
Last week Wednesday Noah had his regular spinal tap. He had to fast for it, and Chris and I always fast with him. But, we have not been able to part with our morning coffee, so on the way through town to Winnipeg, we stop at McD's for our 'fix'. This particular Wednesday we decided to bring Holly and Coltan to the hospital to see what Noah goes through every week. So, of course times have changed since we were kids and now we cannot drive to Winnipeg without the DVD player going in the van. Just after we pick up our coffee, the kids are complaining that the movie isn't starting. So Chris pulls over in the parking lot by McD's, gets out, opens the side door and fixes the movie. All is well, we are off.
We get to the parkade. We park in the William parkade across the street from the hospital because its 'cheaper'. We get out, get the stroller out, get Noah's lunch kit out as he needs to eat as soon as the spinal is done, get my oncology binder out that is packed and overflowing with papers, get the kids out, except for Noah. 'I can't find my flip flop' Noah is saying. What? your flip flop? What do you mean you can't find it, we have just been in the van from home, how can you lose a flip flop in the van?
We search the van. We look under every seat, twice, we look under the van, in the side holders on the doors of the van, in Coltans carseat, everywhere. I look inside the zipped up diaper bag, everywhere. The flip flop is gone. How can you lose a shoe in the van? As Chris and I get increasingly irritated as we have now searched our van through and through and cannot figure out what has happened to the flip flop, he asks me, 'we didn't get out anywhere did we?' 'No!" I reply, ..... Stupid McD's. Then it hits us, the flip flop must have fallen out when Chris opened the van door after we stopped for our coffee. See what happens when you don't eat?
Ok great. We are now in the parkade, 20 minutes late for Noah's spinal because we have ripped our van apart looking for the missing flip flop, and now have to figure out a way for Noah to walk across the street, through the hospital and to his appointment with no shoe. But wait! I knew there was a random sock somewhere in the van. It had been in there for probably a month or more and every time I see it I think 'I should really take that sock inside'. But I never did. Praise the Lord where is the sock!? I find the sock. Noah now has to walk across the street and though the hospital with one red flip flop and one grey disgusting looking sock. It was completely embarrassing. But hey, we are in down town Winnipeg, I'm sure there have been worse things to see:)
So we get to our appointment, and as if walking through HSC with all our kids and Noah with his one flip flop and one sock was embarrassing enough, I yet have to apologize to the nurses and explain that we lost a shoe and that's why we are late. They thought it hilarious. So the kids were rangy and the appointment ran late (partly because of us) and now we have to walk back through the hospital, across the street and into the parkade with one sock and one flip flip on. Very nice. We then had to stop at Walmart to buy shoes for Noah because we had other errands to do after his appointment. I go into Walmart, get to the shoe department. They are completely out of boys sandals and crocs. Great. Really? So, Noah ends up with a ladies size 5 blue flip flop. He has worn them once.
Yes, I can now look back on that day and smile, but I sure wasn't smiling then:)
Friday, August 31, 2012
Because this drug can cause damage to the skin if it is leaked out of the IV, we have decided to put in another port. This decision has not come lightly, and I still have not felt God telling me that its the right decision. The port will go in Monday September 10. The timing is good now because his counts are up and stable, and he is not on the steroid anymore. I am happy with the timing as we have a family wedding on the 8th that I really wanted the kids to attend. They have been asked to say grace over the meal and I really want them to be able to do it. So its good that the port will go in after that. Also, this will able Noah to start school with everyone else on Wednesday. He may miss the entire next week, but we can only ask for a bit of normal at a time these days.
As for school starting, I am feeling very nervous. I don't want him to get sick at all. And I just can't picture him not being here with me all day. This is worse than the first day of kindergarten and grade one combined. We have spent alot of time together this summer and I don't feel like letting him face school alone with cancer.
As for Holly, I think the time apart from Noah will be good. I think she will really enjoy pre-school again this fall, and she is taking ballet and tap. I am not sure how we are going to organize all this. She has pre-school on Tuesdays and Thursdays and ballet on Fridays and cancer clinics are Tuesdays and Fridays. Hopefully it will all fall into place. Trying to be normal in a very hard, trying times is not easy. I lose my patience easier these days.
However, I did feel a bit of hope that I havn't felt yet. I spoke to a dad at cancer clinic this last Tuesday. Our boys were playing PS3 together and his son was at the end of treatment. This is the first friend Noah has made at the clinic. He gave me some insight and it was nice to talk to someone who has been through what we are going through. His son was diagnosed the same as Noah, but high risk. So he had double the treatment, twice as long. And he is just fine. It was really nice to see and encouraging.
On another note, we met with the Dream Factory to discuss Noah's wish. It turns out that Legoland is the winner. We are going to shoot for a spring trip. Hopefully this really intense part will be over by then and we can enjoy the trip.
Prayer requests: that we are making the right decision about putting in another port and that it will heal fast and well and be able to stay in for the duration of his treatment. That school will go well and that Noah will not get sick there.
Monday, August 27, 2012
Monday, August 20, 2012
Some of the less likely effects which we have seen are loss of appetite (he hardly eats at all now), nausea and vomiting (he has a sore belly all the time and threw up a bit this morning). Some other effects that we have not yet seen are skin rashes, mouth sores, jaundice, liver damage, kidney damage and gout. There are worse ones yet.
He is still on the medication called septra, this he takes every weekend only, and will take it throughout the 3 1/2 years. This med provides an antibiotic to a kind of pneumonia. He had a horrible time taking this med. It first came in liquid form, which he hated and threw up. Then we got it in pill form which I crushed and it was a huge ordeal to get him to take it. Now, I discovered that if I split the pill into 4 sections, he can swallow it no problem. That is a huge blessing and so much easier!
In addition to this new med, Noah also goes for IV chemo called vincristine once a week. He also goes for a spinal tap once a week as well, where they inject chemo called methotrexate into his spine. He will do this every week for 4 weeks. He has to fast for this because he is always put to sleep for it. The positive, Noah loves being put to sleep.
So, so far this next phase has been easier. We were able to go camping for 3 nights which was so fun for the kids. Noah has been able to visit his bestest friend a couple times, and we were able to catch a Goldeyes game too courtesy of CancerCare. We are heading out camping again this Thursday for another 3 nights, which the kids are so looking forward to.
Noah still has really negative feeling toward his sister. He just seems genuinely disgusted with her existence. So that is hard to see. I just want them to get along, and have this experience bring them closer together. Instead it's done the opposite.
So for now, things are ok. I am feeling very nervous for school. I have a hard time even thinking about letting him out our door alone and on his own in this germ infested world. I feel like I can almost hear the kids whispering 'that kid has cancer' or 'did you know there's a kid with CANCER here!'. I am feeling sad that hockey registration is approaching and that Noah will be missing out on something that he had loved so much. Hopefully we can arrange for him to still be a part of a team and find some time to get him on the ice when he is feeling like it.
I am amazed from all the support we have received. The prayer, the food, the general willingness of people. It is quite something to experience. You know how people have often said in hard times that you will get help from the people you least expect it from, and receive next to nothing from the people you thought would be there the most? It's true. Aside from our parents of course, we have received tremendous support from people we hardly know. It's amazing. And there of course have been people we are close to that have supported us tremendously as well.
Prayer requests: complete healing for Noah. That the side effects will not be devastating and he will be able to lead a fairly normal life even though he has cancer. For Holly, as she is the middle child and is acting out a bit lately. Not wanting to go to bed, and just needing extra attention I think. For Coltan, that he would continue to be our amazing little baby. Also, for those of you that don't know, Coltan was born with a malformation in his left lung. There was a cyst on it that they detected while I was pregnant, but after birth it was not detected anymore. We do however have to follow up with another xray in about a month. Please pray the that cyst is gone and that the malformation is healed. If its not, they may need to remove it as it can become cancerous in the future. Pray for the start of school to be good for Noah. For great classmates and teachers. And pray that Noah will start to be a little nicer to Holly.
I will try to keep you more in the know. This summer has been crazy to say the least. But I will try to keep you all updated as much as I can.
Friday, August 3, 2012
Today was the first day that we did not have to give Noah the steroid. YAY. The steroids have been awful. The mood swings and emotional ups and downs were too much to handle. He would scream at us and take alot of his anger and rage out on Holly. It has been a very stressful month. But yesterday he had his bone marrow aspiration done (extract bone marrow from inside the bone) and a spinal done to inject chemo into his spinal fluid and extract some to test for leukemia. Hopefully we will get the results on Tuesday. Then that will tell us how much cancer is left in his bone and blood. We are hoping for zero. That will then determine the next phase of treatment called consolidation. It will also give us about a 3 month break from steroids. Thank the Lord. Noah has gained 15lbs in less than 3 weeks. He is huge, swollen and very unsteady. He falls alot because of the weight, but also because of a drug called vincristine. It makes his feet kind of sleepy and he can't life them properly, causing alot of stumbles. Very hard to watch my active son just a month ago go to a boy who cant get out of the van by himself, can't get up when he falls down, can't even pull up his pants by himself. Its heartbreaking.
Now that the steroids are done for a bit, the weight and swelling should start to come off in a few weeks. His appetite should resume to what it was pre-cancer, which will also be a nice break. As he eats every 20 minutes. Hopefully he will want to go outside again and do normal things. Today we went to the parade in town. It was so nice just to be out, all of us, having fun together. But its still there. I still think about the cancer. To anyone who doesn't know us, he looks like a really over weight kid. So even as we are sitting there at the parade, and people are handing out candy, I think to myself "what must those people think of my son. Do they want to give him candy? He looks like he doesn't need any candy". And yet he actually doesn't eat anything sweet, its the steroids. But it just makes me so aware of our situation. He still has all his hair so he doesn't look like a kid with cancer. It's just hard. Even going to a parade.
We now have to start thinking about putting in another port. I can definately see the advantages of having one. He would not need to be poked every week for the next 3 years. Rather just have his port accessed. But I still cannot get the image of his open chest with the port in plain sight out of my head. Nevermind then having another surgery. Its so hard to know what to do. What is best? I want to make everything easier for Noah. Everything that I possibly can, because he has already been through so much and its just the beginning.
There are good moments too. I have found that with the lows there come the highs. He can be so loving and wanting hugs, which was not what he was like before. Which was one of the differences that I had noticed when the lymph nodes started to blow up in November. He can be extremely funny. He was making faces at me and had us both cracking up. He laughs easily now, and can be very sweet. Hopefully those traits remain.
It has changed me as a mom. Before the cancer I was finding it hard to deal with all three kids. Noah's behaviour was exhausting. But now looking back, it was probably the leukemia affecting him. It was hard to manage them and deal with Noah as well. And now, even though its a thousand times more exhausting, physically and emotionally, I think I am a better mom. I treat all my kids better. I don't scream at them, I don't get as frustrated. Its very strange. Sometimes I think God feels he needs to show me the way more extreme wise then others. I guess that's why we trust Him. He knows best, because I sure wouldn't choose having one of my children to have cancer to teach me how to be a better mom.
We were at a wedding last Sunday. It was beautiful, young couple, just lovely. When it came time for the father/daughter dance and the groom/mother dance, I could not take my eyes off of the groom and his mom. His mom was in tears, dancing so closely with her son. It was so beautiful. All I could think about was how badly I want to be in her shoes with my son at his wedding one day, dancing with him. I want him to grow up, and get married. To have children and grandchildren. Not to die from cancer before he reaches 10 years old. I watched the grooms father kiss his son on the cheek and give him such wisdom in the years of marriage to come. I want that to be how Chris will be with Noah in 20years. I want Noah to know how much we love him. And I know that he does, but I want him to grow up knowing that we are here for him always. Not afraid to express our love to one another.
I think this experience, in its short one month thus far, has opened my eyes and taught me more about love and grief and humility and faith and hope than all my other experiences of the like combined. And although I am thankful for what we are learning, and embracing it truly, I wish I knew the outcome still. I want to know that at the end of this, we will still be a family of five. Healthy. Because although I do feel some hope in what I read about survival of ALL leukemia, there is a part of me that believes Noah will die from this cancer.
Prayer requests: complete healing for Noah. For Holly and Coltan to pull through this experience without too many negative 'side effects'. Renewed faith and hope for me (Melissa). That the next phase of treatment will be easier on Noah and all of us.
Praise: we have been given so much food, it has been a huge blessing. Our parents are amazing and have supported us spiritually, financially, and emotionally every step of the way. We have never felt alone.
Saturday, July 28, 2012
-when I see an over weight kid throwing a huge fit or crying or freaking out for no apparent reason, I will NOT assume that the parents are push overs and let their child eat and do whatever they want. Their child may have cancer or some other disease and is on steroids.
-when I see a woman out in public, and she looks like a complete and udder mess, I will NOT assume she is lazy and has let herself go. She may be going through the worse time of her life and that 'look' is all she can manage.
-when someone is grouchy to me, such as a clerk or someone serving you (even a waitress), I will not hold it against them. Who knows what trials they are facing away from work.
-When my children have called me back into their room at bedtime for the 15th time, I will still go because they may need to tell me that they feel sad about something and need to know that I care. Even if its late and I am tired, they need to know that I am there for them, always.
-I have learned that a sense of humor can take you a fare bit and lighten your load.
- that tears are ok, even if its in the middle of superstore.
-that God is here. He has always been here and always will be.
-that I still need reminders of simple things everyday.
-prayer is always working, even if you aren't the one able to do it.
more to come, I am sure about that.
We are seeing I think the worst of the side effects from the steroids. Noah has been in rages for the last 2 days. Its unbearable. I am exhausted and completely out of ideas on how to control this. I don't think we can. He has gained 10lbs in one week. For a boy who weighed 51lbs, this is a big jump. The chemo he had yesterday causes his nerves to not work as well, and because of the weight gain, his balance is off. He fell yesterday and scraped his knee on the street. Which of course makes me worry now for infection. I hate this. I hate ever single part of this. He doesn't look like my Noah, doesn't act like my Noah. I just want this to be over.
I have found myself questioning if chemo is the right answer. Its so harsh. There are so many things we just don't know, and so many decisions we have to make now. I just want someone to tell me that everything is going to be ok, and actually know that it will be. Not just say it because that's what you say to someone with a child with cancer.
I ran into an old friend today. The week her daughter was killed in an accident, I was only a couple weeks away from my due date with Noah. I remember hugging her at her daughters funeral, and as she hugged me she whispered into my ear to love and take care of this baby. And now here I am, 7 years later. Noah has cancer and there is nothing I can do to take it away. Are we making the right medical choices? I can't take this away from him. I can't make the procedures any less painful. I can't do anything to make this better.
Today she hugged me and whispered into my ear once again. She said she was so sorry that I have to go through this, but in the end we will come out stronger. So maybe she is my someone that knows. Her daughter didn't have cancer, but she died. I still have my son. And even though I don't know the outcome I need to live like I do. So when he screams at me and tells me to stop talking and leave him alone, he still has to get sent to his room.
I'm not sure this post made any sense whatsoever. I am so tired. And just typing away not double checking anything. Just typing any thought that comes into my head. And this is me thinking more clearly...
Wednesday, July 25, 2012
The other side effect is the extreme appetite. He will eat meal after meal, non stop all day. Alot of my day is spent in the kitchen preparing food for him. Yesterday he almost polished off an entire jar of pickles. He craves salty and alot of it. The other problem is that the dex (steroid) causes water retention, and paired with the salt, he is very puffy. His belly is 3x the size it was, and his cheeks are completely puffed out and round. This is very different than how he was before. Its hard for me to see. Not only does he act differently, he looks so different as well. And to know that his little body was full of cancer is just heartbreaking.
The dex also causes him to be very hot. He usually has to have a fan on him all the time. He doesn't want to go outside because its so hot lately, and he just doesn't have the energy. Right now, its 10:30am, and he is already having a nap. Yesterday he slept for 2 hours in the afternoon. His sleep at night is disrupted, mostly by the need to eat. He will eat full meals in the night, sometimes several times.
Since his port removal on Friday, he is doing well. The stitches are holding and he is not complaining about them at all. So that has been good. He did however start to complain about pain in his jaw. This was from the chemo he received during the clinic visit on Friday. It causes the nerves to be sensitive and there is a large nerve that runs through the jaw. We cannot give him advil or tylenol. We rather have to take him to our family doctor or the er and get a prescription for morphine. The pain subsided and we didn't end up having to do that. Hopefully this first month will just bring the worst of it and it will be over soon. But we cannot say for certainty that that is the case. We will know more after his next bone marrow aspiration on Aug. 3/12.
Prayer requests: Complete healing for Noah. That the cancer will be completely gone and never return. That the side effects can be managed well.
If you cannot praise Jesus when times are rough, when can you?
When you worship the Lord in your weakness and distress during the darkest hours, it means more to Him than the millions of angels praising him around His throne in heaven.
Sometimes this is all I have to hold onto, yet it has not failed me even once. I know that Jesus is much, much stronger than this situation, much much stronger than this set of circumstances. It is my life preserver in the midst of a stormy sea.
To know that I have the power to bring joy to the Father's heart, to touch Him like at no other time in my life, reminds me that I must not waste this opportunity.
Saturday, July 21, 2012
By this time it was 12:30pm, we had all three kids with us at the Cancer Care Clinic and they told us the earliest that they could do Noah's surgery was 6pm that night. We thought it would be best then if we took our other kids back home to be watched while we traveled back for 6 for the surgery. As we walked in the door at 3:15 that afternoon, the surgical ward called saying they could take us at 4pm. I was absolutely furious. Had we known that they could take him that early, we would never have left the hospital. Now, we have spent over 3 hours in the car and need to go back yet. Then when we got to the hospital and spoke to the surgeon, she asked us why we left. She said that she was told we had 'things to take care of'. Again, furious. What things to I have to take care when my son has a gaping hole in his chest and needs surgery?
So then the surgeon proceeds with all the complications that can come from removing a port. Like coils shooting up into his vein and into his heart, in which case they would need to go through his abdomen and remove it from his heart. Chris and I sat there, completely overwhelmed. Now it feels like the risks of this are outweighing the benefit. We later learned that Noah's skin opened up because of the steroids he is on. It makes the body unable to heal as well. If we had known this, we may have waited until this first month of pumping him full of steroids was over, then put the port in. It just feels so rushed. Why did they do it so soon? They told us they do it soon because they do not like to stick kids with iv's. And now, because of this they have to stick him with iv's every week for his chemo meds. They want to book another surgery in 5 weeks to implant another port. Chris and I feel very leery about this. This was so frightening. I can't even explain the feeling of absolute sickness that came over me when they took that bandage off and there was a hole in my sons chest with a metal button sitting right there in plain sight. It was awful. And now, our poor kid has had 2 surgeries in 2 weeks, and been put to sleep an additional two times for spinals and a bone marrow extraction. This is horrible. I hate this.
After the surgery, they let us go home. Which I was/am very nervous about. If I missed a hole in his chest before, how am I suppose to catch something else? He has permanent stitches that need to be removed in 10 days. I can take the bandages off tomorrow and look at the site. Not that I want to. This is so frightening. I feel like I am constantly checking him to feel if he is feverish. Constantly looking at his chest to see if its red or swollen. A fever will land him in the hospital for a few days and can be life threatening.
From that first day on July 4th, when we learned that it was leukemia, the doctors and nurses all told us, you are his parents, you know him best. But I feel like I don't. I feel like I have missed so many things. From the time that his lymph nodes started to blow up in November, to the time 2 weeks ago when he was pale I feel like I should have known. I feel like we are being rushed into decisions when I am not mentally stable enough to make them. I feel like the steroids are turning him into a monster. So if I missed something before when I 'knew' him, what am I missing now? Somebody please tell me this is a horrible dream, and wake me up.
Through all this Noah has been dealing quite well with the iv's and even the surgery. He likes being put to sleep and isn't afraid at all. He wakes up from his anesthetic very well and is actually quite funny. He had the nurses roaring with laughter last night. The other positive is that we found out that Noah is Low-Standard Risk for treatment. When I learn more about what that means I will let you all know. We know its better than High Risk. Some down side things are that the steroids make him unbearable. He screams and yells at us over anything. He cannot calm down very well either. It takes a long time to give him his meds because he hates them so much, and it ends up being a 20 minute fight each time, which can be 6 times a day. He is absolutely horrible to Holly. He wishes her dead even. And when we try to talk to him, he just screams at us and wont even let us speak. It is extremely taxing. And even though we know it is the steroids, it doesn't really make it any easier. Our child still has cancer. And that sucks no matter what.
Noah gets mad at the doctors, and calls them names (not to their face thank goodness) but its still hard to deal with. It seems we can't reason with him. He doesn't understand that its not the doctors fault that he has to go through all this. He doesn't get that they are the ones trying to help. I find it difficult to help Noah with that attitude, because in many ways I feel the same. I sat in the cancer clinic yesterday and felt myself start to fall apart a bit. I didn't want to be there. I did't want to see all those kids with cancer, and know that my own child is one of them. I found myself feeling angry at the people that were smiling and laughing. I hated the wall paper that was on the wall and the leaf printed chairs. I just didn't want to be there. I didn't want this to happen to us. So how am I suppose to tell my son to have a good attitude when I struggle as well. And I am not so naive to think that he cannot sense at least part of what I am feeling. This is so hard. Hard hard hard.
Even though I know that the Lord is carrying us through this, my faith has taken a blow. And perhaps that is the biggest struggle of all. I know that God did not give Noah cancer. I know that. But I just feel like He isn't hearing me. So many times these last couple weeks I have called out to Him, can't you hear me? I am not strong enough for this God. You picked the wrong people. I can't do this. Please pray for us. Because even though I feel hurt and alone by God, I know I am not. But it's hard. I always prayed for my children. I always said, never my children God. And now here we are. I just want to know that at the end of all this, that it won't be all for nothing. That I will still have my Noah. That we will pull through stronger than we were before. That perhaps our story will change someone's life. I just don't want my child to die to learn those things.
This has been a long hard 2 days. And so this post was filled with alot of emotion. I feel at a very low point right now, and its hard to see into the future at all. I have to go day by day.
Prayer Requests: Complete healing for Noah, that the cancer will be gone and never return. For my sanity. For our marriage, to remain strong and healthy. For Holly and Coltan, as this is hard for them too. That Noah will take his meds better. That doing chemo through his iv will be the best option.
And for all of you that have emailed, called, prayed and supported us through this, there are not words that can express how truly grateful we are. When I feel like God isn't hearing me, I know that He is, and that is because of all the prayer we have received. Thank you all so much. -Melissa
Thursday, July 19, 2012
Hi there guys, this is Noah's mom. Some of you know me as Noah's mom:), Miss Melissa, or in very special circumstances Missy:) I thought that I should let you know how Noah is feeling these days. He is home from the hospital and having fun playing video games. Its hard for him to play outside because he gets tired very easily. And he should not be in the sun too much either. Noah has to take alot of medicine that is not very fun, so if you could remember to pray for him that taking his medicine would get easier, that would be great! One thing that lots of kids want to know, is what will happen when Noah loses his hair? Noah feels ok about losing his hair, but let's remember not to laugh when that happens because that will hurt his feelings. And besides, it will grow back one day. Some of you may want to know whats wrong with Noah. Noah has something called leukemia. That is also called cancer. Cancer can be a very scary word because maybe you had a grandma or a grandpa that had cancer and got very very sick, or even died. But cancer in kids is different that in adults. So let's remember to pray everyday that Noah's cancer will go away and never come back. I hope that this helps you understand a little bit about what's happening to Noah. But if you have questions, you can always ask your mom and dad, and if they don't know the answer, maybe you could send me a message or even Noah and we can send you a message back! Have fun, and remember to pray for Noah. Melissa
Hope this helps a bit with reading some of our story to your children. God hears their prayers too, and its so very important.
Monday, July 16, 2012
As I drove to Winnipeg this last Friday morning a large truck went flying past me. I just so happened to catch the license plate. All it read was "ABLE". It felt as though God gave me a reminder. He is able. And through him I will be able to handle things. When I got to the hospital, Noah was to get another spinal tap, where they would put him to sleep, take a sample of spinal fluid, and inject the chemo meds into his spinal fluid. As they wheeled us down a few floors, they parked us in a room where Noah could watch the construction site below. There was a crane slowly driving forward. As it moved, it began to reveal the name on it. "ABLE". I sat there, staring at the letters. I am able. Through God I am able. But I fear I will need alot of reminders.
The journey before us feels forever long. Three plus years of this? I can't imagine. That Friday afternoon, Noah was discharged from the hospital. We have now spent 3 nights at home. It feels really good. He is doing well at home. Healing from his central line, and sore muscles from favoring that side. We even kicked the ball around outside yesterday. He has a difficult time taking his medication. Its all liquid which is hard for him, and it tastes awful. The steroids are affecting his appetite, so he eats constantly. And not snacks, actual meals. It has also affected his mood and emotions. He spent the better part of this morning screaming at me. Its challenging. More than I can even describe.
The support that we have received from family and friends is overwhelming. My heart is completely overjoyed from it all. I feel the prayer. I feel the Lord carrying me through this, as He is Noah and all of us. Sometimes I think that God thinks we are stronger than we are though. I struggle with thoughts like that, and being positive. - Melissa-
pray for complete and absolute healing for Noah at the end of all this. That the cancer will be gone completely and never return. That Noah will cope well with the many side effects, like losing his hair, moods and emotions, pain and discomfort. That Chris and I will remain strong together. That I will gain hope and be positive. That our other children will pull through this strong. That we will figure out our new normal.
Saturday, July 14, 2012
Well today is our first full day at home with our whole family. We were discharged late yesterday afternoon. So far, so good.
We are coping with trying to get Noah to take his meds, which can be a colossal struggle at times. It sure is nice to be home though. It seems almost normal.
He slept like a baby last night, and the steroids are starting to increase his appetite. He talks about food a lot.
Keep praying for us, that he would cooperate with us and take his meds without a fight. That the meds would do what they are supposed to, and strength for Miss and I
Wednesday, July 11, 2012
So much uncertainty. One of the nurses came to speak to us today about going home and what that can look like. As much as we all want to go home, it's frightening. We don't have the nurses and doctors here on hand to guide us. We will have to rely on our own judgement. They will always be available for us to call, which is nice. It's just hard to try and imagine what our life will look like. We take it day by day for now.
The side effects can be scary. He will become irritable and short tempered. His sleep will be disturbed. He will want to eat all the time. Nevermind all the effects that can be harmful to him, like fevers and bleeding and so many other things that we will need to know how to control and handle. He will be on medication to subdue nausea and infection. And we will have to be very careful when his blood counts are low. We may not be able to go out with him, and certainly not have anyone visit who is sick in any way. Its all so overwhelming.
Prayer requests: that his port will heal, and he will be more mobile soon and not in any pain. That his mood will be tolerable for us as parents. That this cancer will be killed and never return. That our other children will cope well with this life now. That our family will grow stronger and closer through this experience. - Melissa -
Noah is currently having his 2nd blood transfusion (the first was last Wednesday). He is very pale and weak, and his appetite is not very good right now, although he had a good breakfast this morning.
He is having difficulty moving today because his chest and neck are so sore from his surgery last night, where he had a port put in his chest. It is a semi-permanent IV where meds can go in and blood can come out, without having to stick him with needles all the time. We are also possibly starting to see some bad attitude from him, which is one of the side effects from one of his chemo meds.
It is difficult to watch him like this, as all you want to do is take all his pain on yourself. It is a very helpless, sickly feeling. We are, however, still optimistic that we might be able to come home on Friday.
Continue to pray.......
Tuesday, July 10, 2012
Right now, we are waiting to get a port put into his chest. This is like an iv that stays under the skin where he can get some of his chemo meds. They can also draw blood from it. So it makes the process alot 'easier' as they don't have to poke him everytime.
I (mom) am feeling a bit nervous. Its considered surgery, and he will be put under and have a breathing tube put in. He will also need another blood transfusion before the procedure. This is all so overwhelming. I wish I could fast forward to the end of the 3 years and look at my beautiful healthy son and forget this horrible reality. Perhaps I will feel differently later on. I'm sure there are many things that we will learn from this. Things that I already have learned and appreciate.
Chris and I both miss our other children so much. Its hard to be seperated all the time. Something we are not use to. Its hard on Holly too. Coltan is such a happy baby, and so far hasn't forgotten me. We have been honest with Noah and Holly about the cancer, which is a good thing. I can't imagine trying to hide this yet.
Some of our friends and family ask what they can do to help. I don't know. I hope and I am sure that when we do know what we need, you will be there for us at that time. 3 years is a long time to get through this. And if I don't know what I need on day 5, I may know on day 365. I still feel like I am dreaming, and this isn't our life. That my boy isn't laying in the hospital bed, filled with cancer. That I am not having to learn what platelets mean, and neutrophils and white and red blood cells do. That I didn't have to know what the numbers all mean. I wish all I had to worry about was what to do today to keep my kids busy during the summer. Something I stressed about just 7 days ago. Seems so ridiculous now.
Prayer: Please pray that the port will go in smoothly. That Chris and I will know how to care for it properly. That Noah can come home soon. That he doesn't have any bad reactions to blood or meds. That we all remain positive. That this cancer will leave him completely and never return. That our other children stay healthy. That the side effects will not be horrible.
Monday, July 9, 2012
I even got a tattoo to commemorate the occasion, and to help me remember that I am much stronger and more capable than I often think I am.
I catch myself staring at that tattoo much more frequently these days.......
Sunday, July 8, 2012
Even though it was not totally confirmed that this is what Noah had, the ER doctor had a pretty good idea, and figured that the doctors in Steinbach suspected Leukemia as well. Which was why they sent us to Children's.
This brings us to the moment, where the doctor comes into the room and tells you that what our son most likely has is cancer. Wishing that we could just pretend that we didn't just hear that, instead we are plunged into this horrific reality.
We are brought up to our room which we will likely spend the next 10 days or so in. Noah is excited because it has a PS3 in it:) That night Noah received a blood transfusion, and alot of fluids. He got an xray as well.
The following day Noah had a bone marrow extraction and a lumbar puncture to determine how much Leukemia he has. His bones and blood contain nearly 100% of leukemia. Which explains the paleness, lethargy and bone aches.
From there we start Chemotherapy. A shot of chemo was already injected during the LP because that is where leukemia likes to hide, in the spinal fluid. We later learned that Noah does not have any leukemia in his spinal fluid, but will continue to get shots there to be safe.
The bone marrow was full of leukemia. Leukemia is cancer of the bone and blood, therefore, Noah has it everywhere.
From there we go day by day regarding chemo. Each day is numbered, today is DAY 3. On day 29, Noah will have another bone marrow extraction and they expect to see less that 1% of leukemia in the bone. Yes, you read that right. The first month is intensive. After that first month, it will take 3-3.5 years to kill the last 1% of leukemia. This does not mean it will be easy, even though the amount is small.
The side effects of chemo seem outrageous. And it feels like we are pumping him full of chemicals that will change him into someone else. We should start to see them soon. The big one that everyone asks is will he lose his hair? Yes, in about 2 weeks. And it may stay like that for the remainder of the 3 years.
Noah is ok. He knows he has cancer, so please don't feel like you can't say the 'c' word. Holly also knows he has cancer. He is sad at times because we were suppose to go camping, not stay in the hospital. Otherwise, he feels optimistic. I asked him if he thought he was going to die, and he said "no".
Chris and I are hanging in there. Its hard. More that I can even describe. Your prayers and willingness to help us does not go unnoticed. We appreciate all that you are doing for us.