Friday, August 31, 2012

Another month

Well, another month under our belt. The second month of chemo was way better than the first. Noah has been taking his meds so well and even learned how to swallow a pill quartered. It has been so much easier. But, it seems like it will be the calm before the storm. The next round will be more intense. He will be going in for IV chemo about every 10 days. Its called vincristine. He has received this since the start, but not this frequently. It causes cells to stop dividing. The side effects are severe constipation, pain in the jaw/face, back, joints and bones, foot drop, numbness, tingling in toes and fingers, extreme weakness and loss of muscle mass, drooping eye lids, hair loss, pain, blisters and skin loss if the drug leaks during administration. These are the most common side effects. The infrequent side effects are: headaches, dizziness, seizures and paralysis.

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

Camping at Wild Oaks Campground

Had fun camping at Wild Oaks, even got a round of mini golf in at the wonderful course at Gepetto's on Hwy 1. A little bit of normalcy in an otherwise chaotic summer. God is good ALL the time :)

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Monday, August 20, 2012

The Next Phase

Well we have successfully completed the first phase of chemotherapy. The first month was extremely challenging, and we are so thankful that its over. The steroid came with a load of side effects. Noah gained 15lbs in 3 weeks. He looked like a different kid and acted like one too.  After the first month (induction) was over, he had about a week break from chemo. He has now started the second phase (consolidation). He is on a new medication called mercaptopurine, for one month. The most likely side effects that we will see affect his blood counts. Which can cause him to feel tired and weak, bruise and bleed more easily, and more likely to get sick.

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

A good day

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.