Life is good.
Today Mark and I got great news from Xavier's team of doctors at Mac. His tumour remains stable after eight months off treatment. His radiology-oncologist even went as far as saying he thought it looked like the tumour had even shrunk a tiny bit.
Everyone commented on how great he looked.
It was the best news we could possibly get. While what we want to hear is that he is cured, we know that is not a reality. However, today's news puts us a little closer to hearing that.
Given the aggressiveness of his cancer and its past behaviour off treatment, doctors were impressed with the MRI results and his progress thus far.
Although they couldn't say we are out of the woods yet, they are optimistic. His next MRI will be in July.
We even saw his neurosurgeon again today. He didn't even recognize Xavier since he has grown up so much since his surgery one year ago. His hair was also a big hit.
It gives me a great sense of pride and joy to "show him off" to the doctors, who just one year ago, feared our baby would not make it. I can also see the pride in them, knowing that they had a hand in saving his life. We will be forever thankful to Dr. Gunnarson, Dr. Scheinemann and Dr. Whitton and Dr. Sighn.
I couldn't sleep last night as I worried about what today might bring. Again, our lives could have been turned upside down with just two words: new growth. My gut said he was fine, but deep down I still feared the worst. As I anticipated good news, I braced for the bad.
Once again, Xavier has proven he is a living miracle.
I often recall two statements made during this difficult journey: one I said as I drove to the emergency department at Brantford hospital the day Xavier was sent for a CT scan and the second said to me by my pastor while at McMaster while Xavier was in the operating room.
"I will not bury my child."
"He will survive this and fully recover."
When I find myself thinking negatively, I find strength in these statements. I say them with conviction and believe them.
This journey is not over, but I am celebrating today.
Tuesday, March 8, 2011
Friday, February 4, 2011
Twin love
Now that the twins are nearing two, I am finally starting to see them interacting more together in a positive way.
Up until this point they would interact -- but by pulling each other's hair, biting or just taking each other's toys away. The constant jealousy was clearly evident too when I would pick one up the other would scream and whine and cry and ...
But they do the sweetest things now. It is especially nice to see Mackenzie enjoying her brother around. For the longest time it seemed like she hated him, or at least, she hated sharing mommy with him. If she woke up in the morning before him we would spend some nice quality time together. But as soon as Xavier got up, she was miserable and would start crying at the first sight of him.
I think she enjoyed being an only child while Xavier was in the hospital. Although they are the same age (of course they are twins except Xavier is three minutes older) I kind of see Mackenzie as the older sister. Because Xavier has some catching up to do, Mackenzie is trying to help him out.
The other day she grabbed his hand as he was trying to walk. She did this multiple times as he attempted to stand up from sitting on the bottom stair of the staircase. She was truly trying to help him walk. It was so cute. She also likes to feed him.
On the rare occasion too, they will pass a ball or a car to each other. And as it has been for some time now, when one is upset, the other one gets upset too.
They also like to give each other kisses in the bathtub (Mark thinks it is weird) but I think it is really sweet to see them getting along so well.
I was worried they may never have a close bond, but everyday I see little things that show me how much they are attached.
It is wonderful to see. And it will be wonderful to see them walking side by side very soon. Xavier took his first steps on Feb. 2 (a year ago that day he was in 12-hour brain surgery). So now I have a much better thing to remember every Feb. 2!
Up until this point they would interact -- but by pulling each other's hair, biting or just taking each other's toys away. The constant jealousy was clearly evident too when I would pick one up the other would scream and whine and cry and ...
But they do the sweetest things now. It is especially nice to see Mackenzie enjoying her brother around. For the longest time it seemed like she hated him, or at least, she hated sharing mommy with him. If she woke up in the morning before him we would spend some nice quality time together. But as soon as Xavier got up, she was miserable and would start crying at the first sight of him.
I think she enjoyed being an only child while Xavier was in the hospital. Although they are the same age (of course they are twins except Xavier is three minutes older) I kind of see Mackenzie as the older sister. Because Xavier has some catching up to do, Mackenzie is trying to help him out.
The other day she grabbed his hand as he was trying to walk. She did this multiple times as he attempted to stand up from sitting on the bottom stair of the staircase. She was truly trying to help him walk. It was so cute. She also likes to feed him.
On the rare occasion too, they will pass a ball or a car to each other. And as it has been for some time now, when one is upset, the other one gets upset too.
They also like to give each other kisses in the bathtub (Mark thinks it is weird) but I think it is really sweet to see them getting along so well.
I was worried they may never have a close bond, but everyday I see little things that show me how much they are attached.
It is wonderful to see. And it will be wonderful to see them walking side by side very soon. Xavier took his first steps on Feb. 2 (a year ago that day he was in 12-hour brain surgery). So now I have a much better thing to remember every Feb. 2!
Sunday, January 30, 2011
Reflections
I can hardly believe it has been a year since our worst nightmare struck. It was a very dark time for our family, but here we are a year later with a happy, healthier Xavier and his busy twin sister.
There are so many emotions running through me right now that I don't even know where to begin. As I reflect on the terrible news we got this time last year, I also think of how lucky we are today that he is still with us.
It was Feb. 1 when our family started what (I hope) was the most difficult journey we would ever have to face - our son's cancer diagnosis.
On Feb. 2, Xavier underwent 12 hours of brain surgery to remove a complicated tumour that was wrapped around his brain stem. On Feb. 10 (my birthday) we learned he was fighting an aggressive cancer, known as anaplastic ependymoma.
Unlike anything I have experienced before, this was the biggest challenge of my faith and life as I knew it. I was a true believer in that everything happens for a reason. But I could find no reason why an innocent baby had to struggle through his young life. That was then. This is now and I still believe that everything happens for a reason.
Through this unbelievably tough journey, I have met some great people, found out who my true friends are and built an unbreakable bond with my husband and family. I see things differently now and have more empathy for those struggling through difficult times in life. I know what it feels to be depressed. I know how it feels to love unconditionally. And I know how it feels to believe--to believe in the greater good, no matter what the situation may be.
I remember this month last year as being the worst time ever in my life. But as I reflect on those early days in the hospital, I see things differently. On Feb. 2, I learned that miracles really do happen. God proved that in the operating room that night. Thank you God for all the blessings you have given my family.
Xavier is doing very well these days. He is not yet walking, but is well on his way. His speech is coming along as well and he is eating better these days. However, he still gets much of his nutrition through a feeding tube. We have gone from administering seven medications a day to only one. His last MRI in November showed no new growth and we are expecting the same result after his next MRI on March 7.
It is always in the back of my mind that at any time we could be back to where we were this time last year. And as much as I want to believe the cancer is gone, we don`t know. We won`t know for some time. But in the meantime, I am going to treasure each and every day.
Days after Xavier was admitted to hospital, I started writing in a journal. Until tonight, I have not been able to read what I wrote in those grief-stricken days after his surgery. Reading it takes me back to those horrible days, but it also gives me a sense of how far we have come today.
Feb. 6, 2010
On the road to recovery
Xavier has been in the hospital for six days now and in recovery from his 12-hour brain surgery. He is still so fragile and is being closely watched in the ICU at Hamilton hospital. He is having trouble sleeping and does not want to be alone. When we hold him he is much more content. Today he had another CT scan because his blood pressure increased and heart rate dropped signaling possible pressure in the brain.
Feb. 9, 2010
Yesterday I brought Mackenzie in to see Xavier. He almost smiled. You could really tell he missed his sister. He was so calm having her around. She wasn`t as excited to see him, but in the morning when I got her up she looked at his empty crib. That is really tough to deal with when I am home. I just don`t know how to do it with one. I`ve always done it with two and that is how it is supposed to be -- and will be!
We met the other surgeon this morning... she said the pathology results will likely be back this afternoon. My heart sinks a little knowing what we are potentially and most likely going to hear. It is unbelievable to think an 8-month old has cancer. My poor little guy.
Feb. 10, 2010
Xavier smiled today for the first time since his surgery! Today is my birthday and his great big smile was the best gift ever! He was so alert and so playful.
Feb. 16, 2010
Been a rough ride these past few days. On Feb. 10 we were told Xavier had a rare, aggressive cancer. The prognosis is not good, but doctors want to try chemo and possibly radiation when he reaches age one. This was a devastating blow, one we knew was coming but didn`t want to hear. To think of losing my little boy is indescribable, so much pain right now. He doesn`t deserve any of this, he is just an innocent boy who could do great things. But on a brighter note, Xavier has been smiling so much every day. He even giggled too. It is great to see the old Xavier coming back to us even if it is only for a short while. The chemo will wipe him out. I hate to see him go through it but there is a chance -- we have to take it.
And take it we did. Xavier is a fighter and a survivor!
There are so many emotions running through me right now that I don't even know where to begin. As I reflect on the terrible news we got this time last year, I also think of how lucky we are today that he is still with us.
It was Feb. 1 when our family started what (I hope) was the most difficult journey we would ever have to face - our son's cancer diagnosis.
On Feb. 2, Xavier underwent 12 hours of brain surgery to remove a complicated tumour that was wrapped around his brain stem. On Feb. 10 (my birthday) we learned he was fighting an aggressive cancer, known as anaplastic ependymoma.
Unlike anything I have experienced before, this was the biggest challenge of my faith and life as I knew it. I was a true believer in that everything happens for a reason. But I could find no reason why an innocent baby had to struggle through his young life. That was then. This is now and I still believe that everything happens for a reason.
Through this unbelievably tough journey, I have met some great people, found out who my true friends are and built an unbreakable bond with my husband and family. I see things differently now and have more empathy for those struggling through difficult times in life. I know what it feels to be depressed. I know how it feels to love unconditionally. And I know how it feels to believe--to believe in the greater good, no matter what the situation may be.
I remember this month last year as being the worst time ever in my life. But as I reflect on those early days in the hospital, I see things differently. On Feb. 2, I learned that miracles really do happen. God proved that in the operating room that night. Thank you God for all the blessings you have given my family.
Xavier is doing very well these days. He is not yet walking, but is well on his way. His speech is coming along as well and he is eating better these days. However, he still gets much of his nutrition through a feeding tube. We have gone from administering seven medications a day to only one. His last MRI in November showed no new growth and we are expecting the same result after his next MRI on March 7.
It is always in the back of my mind that at any time we could be back to where we were this time last year. And as much as I want to believe the cancer is gone, we don`t know. We won`t know for some time. But in the meantime, I am going to treasure each and every day.
Days after Xavier was admitted to hospital, I started writing in a journal. Until tonight, I have not been able to read what I wrote in those grief-stricken days after his surgery. Reading it takes me back to those horrible days, but it also gives me a sense of how far we have come today.
Feb. 6, 2010
On the road to recovery
Xavier has been in the hospital for six days now and in recovery from his 12-hour brain surgery. He is still so fragile and is being closely watched in the ICU at Hamilton hospital. He is having trouble sleeping and does not want to be alone. When we hold him he is much more content. Today he had another CT scan because his blood pressure increased and heart rate dropped signaling possible pressure in the brain.
Feb. 9, 2010
Yesterday I brought Mackenzie in to see Xavier. He almost smiled. You could really tell he missed his sister. He was so calm having her around. She wasn`t as excited to see him, but in the morning when I got her up she looked at his empty crib. That is really tough to deal with when I am home. I just don`t know how to do it with one. I`ve always done it with two and that is how it is supposed to be -- and will be!
We met the other surgeon this morning... she said the pathology results will likely be back this afternoon. My heart sinks a little knowing what we are potentially and most likely going to hear. It is unbelievable to think an 8-month old has cancer. My poor little guy.
Feb. 10, 2010
Xavier smiled today for the first time since his surgery! Today is my birthday and his great big smile was the best gift ever! He was so alert and so playful.
Feb. 16, 2010
Been a rough ride these past few days. On Feb. 10 we were told Xavier had a rare, aggressive cancer. The prognosis is not good, but doctors want to try chemo and possibly radiation when he reaches age one. This was a devastating blow, one we knew was coming but didn`t want to hear. To think of losing my little boy is indescribable, so much pain right now. He doesn`t deserve any of this, he is just an innocent boy who could do great things. But on a brighter note, Xavier has been smiling so much every day. He even giggled too. It is great to see the old Xavier coming back to us even if it is only for a short while. The chemo will wipe him out. I hate to see him go through it but there is a chance -- we have to take it.
And take it we did. Xavier is a fighter and a survivor!
Friday, November 26, 2010
Finally... some good news!
It will be a very merry Christmas in the Garrett house this year! Today, we got the results of Xavier's MRI. There is no new growth and the doc said the tumour is stabilized. We were expecting good news, but there was always that chance it could have gone the other way. Now, we wait for the next MRI, which will be in March.
Tonight we celebrate. Although it is not the end, nor are we anywhere near to hearing he is cured, it is one more success along this long road.
Now, when he gets sick this winter, we don't have to worry that it could be tumour-related... we know it's not, at least for the next couple months. He is doing really well aside from his feeding issue and the latest -- his fractured ankle. The poor little guy is in leg cast.
But tonight, we don't think about that. All I want to do is eat my celebratory cake.
Tonight we celebrate. Although it is not the end, nor are we anywhere near to hearing he is cured, it is one more success along this long road.
Now, when he gets sick this winter, we don't have to worry that it could be tumour-related... we know it's not, at least for the next couple months. He is doing really well aside from his feeding issue and the latest -- his fractured ankle. The poor little guy is in leg cast.
But tonight, we don't think about that. All I want to do is eat my celebratory cake.
Monday, November 22, 2010
Our first Chrismtas
"Life today is not what it was yesterday."
We are heading into our second Christmas season with the twins. They will be 18 months old on Nov. 30. What a different Christmas it will be this year. As much as I want to remember the kids' first Christmas as being full of magical moments and memories we will keep forever, I can't. I actually look forward to making lasting memories this year with them to replace the rather upsetting memories from last.
It was about this time when Xavier was starting to get really sick. He never got better. By Christmas 2009, he was throwing up almost every day and crying uncontrollably most of the day. He looked terrible with big, purple bags under his eyes and when you looked into his baby blue eyes you could see pain and suffering.
Our first Christmas with the twins was one of sadness and helplessness, not knowing what was wrong with Xavier. He cried Christmas morning between opening gifts. He cried through our dinners and cried during our family trip to Great Wolf Lodge.
This year, he is a totally different kid. He is happy. He looks well and as far as we know he feels well. He and Mackenzie are two peas in a pod and I am so excited about seeing them interact together Christmas morning.
I can't wait to see their eyes light up when they open their presents and play with the boxes and not the toys. I want to see their smiles when they eat Christmas dinner and all the sweet treats to follow.
To me, this is our first Christmas with the twins.
Xavier may have brain cancer, but my little guy is so much better now. He has a MRI Nov. 25 and I am confident the results will be good.
He is a fighter.
He is strong.
And he has an adorable sister who loves him even though she doesn't always show it.
Mackenzie has quite the personality. What a drama queen . She is the complete opposite of Xavier. He is easy going, laid back and quite content whereas she is eccentric, the spirited one of the pair. But she is perfect in my eyes and everyday I look them as they play and can't help but smile.
Life is not what I expected it to be, but it's exactly what it should be. God made it so and I am thankful for that.
We are heading into our second Christmas season with the twins. They will be 18 months old on Nov. 30. What a different Christmas it will be this year. As much as I want to remember the kids' first Christmas as being full of magical moments and memories we will keep forever, I can't. I actually look forward to making lasting memories this year with them to replace the rather upsetting memories from last.
It was about this time when Xavier was starting to get really sick. He never got better. By Christmas 2009, he was throwing up almost every day and crying uncontrollably most of the day. He looked terrible with big, purple bags under his eyes and when you looked into his baby blue eyes you could see pain and suffering.
Our first Christmas with the twins was one of sadness and helplessness, not knowing what was wrong with Xavier. He cried Christmas morning between opening gifts. He cried through our dinners and cried during our family trip to Great Wolf Lodge.
This year, he is a totally different kid. He is happy. He looks well and as far as we know he feels well. He and Mackenzie are two peas in a pod and I am so excited about seeing them interact together Christmas morning.
I can't wait to see their eyes light up when they open their presents and play with the boxes and not the toys. I want to see their smiles when they eat Christmas dinner and all the sweet treats to follow.
To me, this is our first Christmas with the twins.
Xavier may have brain cancer, but my little guy is so much better now. He has a MRI Nov. 25 and I am confident the results will be good.
He is a fighter.
He is strong.
And he has an adorable sister who loves him even though she doesn't always show it.
Mackenzie has quite the personality. What a drama queen . She is the complete opposite of Xavier. He is easy going, laid back and quite content whereas she is eccentric, the spirited one of the pair. But she is perfect in my eyes and everyday I look them as they play and can't help but smile.
Life is not what I expected it to be, but it's exactly what it should be. God made it so and I am thankful for that.
Tuesday, September 14, 2010
Wow I so apologize for not keeping up with this blog. I have failed my mandate here, and I am sorry. To be honest, I forgot my password and couldn't login.
A lot has happened over the past few months... to much to talk about really so I will just get to the most recent.
I guess first, Mackenzie has taken her first steps!!! This past week she has taken steps here and there when I have encouraged her to get a toy or her sippy cup. She is adorable.
As for Xavier, he is doing well. We have experienced some set backs, like an ear and throat infection and just found out today that he has severe acid reflux which has been preventing him from eating. Poor guy.
Mark and I are both back to work and making the transition has been hard on us all. The kids are so used to having us both here all the time that they are very jealous when they have to wait for me to do something with one and not the other. It will just take some time to build new routines and find what works and doesn't.
Now that I can access my own blog again (hehe) I will try to update more often.
A lot has happened over the past few months... to much to talk about really so I will just get to the most recent.
I guess first, Mackenzie has taken her first steps!!! This past week she has taken steps here and there when I have encouraged her to get a toy or her sippy cup. She is adorable.
As for Xavier, he is doing well. We have experienced some set backs, like an ear and throat infection and just found out today that he has severe acid reflux which has been preventing him from eating. Poor guy.
Mark and I are both back to work and making the transition has been hard on us all. The kids are so used to having us both here all the time that they are very jealous when they have to wait for me to do something with one and not the other. It will just take some time to build new routines and find what works and doesn't.
Now that I can access my own blog again (hehe) I will try to update more often.
Monday, June 28, 2010
Another road block
I knew things were going too smoothly. Xavier has so far managed to have no ill effects from the radiation and has been developing by leaps and bounds for the past couple weeks. But today, the good news turned ugly.
We were told today Xavier has a blood clot where his new pic line was put in just two weeks ago. He was put on blood thinners which requires me to give him needles in his leg twice daily!
We had no idea there was a problem until yesterday when I noticed his left arm was a different colour than his right. He had a sock holding his pic line in place so I removed the sock thinking maybe it was too tight and cutting of his circulation. I waited a couple hours and his arm was still purplish. There was also a little bit of blood where his pic line entered his arm. By bedtime his arm was slightly swollen and still discoloured. We called the doc who said to keep measuring his arm to see if continues swelling. It was ok when we measured two hours later, so we left it for the night.
Today we went to 3F clinic to have the doctor have a look at it. He was immediately sent for an ultrasound where the clot was found. The tech couldn't tell us there, but we knew something was wrong when she told us to go back to the waiting room she was calling the doctor.
He had to get blood taken twice - one from the tiny vein in his hand and more from the vein in his foot. After all that, I had to give him his first shot of blood thinner. I hate the thought of having to prick my little boy, but I know it is for the best. I just hope he doesn't associate that with me and not like his mommy anymore.
And then poor Mackenzie. We had to ship her off to nearby relatives so we could be with Xavier at the hospital again. She looked so sad when we dropped her off. Those puppy dog eyes were ready to burst with tears. But our tough little girl held it in and had a great day.
Well it has been a long, stressful day (but what day isn't) and the kids are in bed now, so I am going to relax and take in, yet again, the bad news.
We were told today Xavier has a blood clot where his new pic line was put in just two weeks ago. He was put on blood thinners which requires me to give him needles in his leg twice daily!
We had no idea there was a problem until yesterday when I noticed his left arm was a different colour than his right. He had a sock holding his pic line in place so I removed the sock thinking maybe it was too tight and cutting of his circulation. I waited a couple hours and his arm was still purplish. There was also a little bit of blood where his pic line entered his arm. By bedtime his arm was slightly swollen and still discoloured. We called the doc who said to keep measuring his arm to see if continues swelling. It was ok when we measured two hours later, so we left it for the night.
Today we went to 3F clinic to have the doctor have a look at it. He was immediately sent for an ultrasound where the clot was found. The tech couldn't tell us there, but we knew something was wrong when she told us to go back to the waiting room she was calling the doctor.
He had to get blood taken twice - one from the tiny vein in his hand and more from the vein in his foot. After all that, I had to give him his first shot of blood thinner. I hate the thought of having to prick my little boy, but I know it is for the best. I just hope he doesn't associate that with me and not like his mommy anymore.
And then poor Mackenzie. We had to ship her off to nearby relatives so we could be with Xavier at the hospital again. She looked so sad when we dropped her off. Those puppy dog eyes were ready to burst with tears. But our tough little girl held it in and had a great day.
Well it has been a long, stressful day (but what day isn't) and the kids are in bed now, so I am going to relax and take in, yet again, the bad news.
Wednesday, June 23, 2010
Sleepless nights
I am almost too tired to even write this post... my eyes are heavy and my body weak.
But I have been slacking on my updates (among a number of other things).
Have had some emotional days recently. Nothing particular has happened, just a lot of reflecting on what has transpired in the past five months. But I find just when I start to feel sorry for myself I am reminded of all that I have to be thankful for... two beautiful children. I can't help but think of all those parents who either lost a child or were unable to get pregnant. No matter how bad some days are with the kids, I am very lucky to have them, to hold them in my arms and kiss them goodnight each and every night. I frequently have the urge to go into their rooms and watch them sleep as I often did when I first brought them home from the hospital 12 months ago.
The twins are becoming little people now; full of personality. Mackenzie has become so independent now and I treasure each time I get her still long enough to cuddle. Xavier is also progressing by leaps and bounds. He is one smart kid. He amazes me everyday with what he can do despite all that he has been through.
Unfortunately he has been having headaches and his nights have been extremely restless. He wakes up several times moaning and whining and kicking at the mattress or crib rails. He will be up for an hour or so doing this before settling again for a couple hours. It is really difficult not knowing what is wrong... could just be teething but could also be a side effect of radiation.
Nonetheless, I am not going to use this time to complain about my lack of sleep, but rather cut this post short so I can catch up on some of that lost sleep.
Good night!
Monday, June 14, 2010
A rough day
Coming back to Hamilton after a weekend back home is tough. Not only did it mean another disruption in the kids' schedule, but back to the daily reminder that Xavier has cancer.
We also found out today that Xavier will have to have another pic line put into his other arm. The other line sprung another leak and must be removed. It is a minor proceedure, taking between 30 minutes to two hours, but it does mean two sedations in one day and another risk for infection. We have been lucky so far that radiation has not lowered his white blood cell counts, but after his central line got infected we are paranoid about it happening again. He will be back in the OR on Thursday at noon. We should be able to come home after he wakes up as long as there are no complications. However, until then he has to have an IV in his foot to be sedated for radiation. The little guy did so well this morning when the put the IV in. He cried, but as soon as it was over and I could get him in my arms he was smiling.
He is such a tough baby -- or toddler now I guess. He is also getting up on his knees and rocking finally. It is really incredible to see him devolping despite the treatment and everything he has been through. Nothing is going to hold Xavier back! NOTHING!
We also found out today that Xavier will have to have another pic line put into his other arm. The other line sprung another leak and must be removed. It is a minor proceedure, taking between 30 minutes to two hours, but it does mean two sedations in one day and another risk for infection. We have been lucky so far that radiation has not lowered his white blood cell counts, but after his central line got infected we are paranoid about it happening again. He will be back in the OR on Thursday at noon. We should be able to come home after he wakes up as long as there are no complications. However, until then he has to have an IV in his foot to be sedated for radiation. The little guy did so well this morning when the put the IV in. He cried, but as soon as it was over and I could get him in my arms he was smiling.
He is such a tough baby -- or toddler now I guess. He is also getting up on his knees and rocking finally. It is really incredible to see him devolping despite the treatment and everything he has been through. Nothing is going to hold Xavier back! NOTHING!
Relay for Life
Each day through this journey with my son I feel emotions I never knew existed. I often cannot find the words to describe these foreign feelings, and know that even fewer people can understand them unless they have been there.
On Friday night our family attended the Relay for Life in Tillsonburg. I had been to the event in the past, but never with a survior. It was a totally different experience. Even as we drove to the Relay I could feel butterflies in my stomach -- a knot that was overflowing with mixed emotions. I was sad that my son could participate in the Victory Lap because it meant that he has cancer, but also happy because Xavier could be there to show he was winning the battle. I was also grateful to see the support of friends and family who donned blue t-shirts brandishing Xavier's picture and Team X.
Xavier was the youngest survivor and we walked along the oldest survivor (she was 99 and still very much with it).
It was amazing to see the sea of yellow as the surviors took to the track, including a few other children. I was again sad to see that so many people must go through this difficult journey, but also happy to see so many people beating it.
We were interviewed by the local newspaper and put on the front page of today's Tillsonburg News. I was somewhat embarrassed and guilty to have the attention, knowing how many other kids going through the same struggles as Xavier. Their stories should be heard too.
I am praying for all of them.
Mark and I are also planning to attend Woodstock's Relay for Life this coming Friday and again walk as a family for the Victory Lap.
On Friday night our family attended the Relay for Life in Tillsonburg. I had been to the event in the past, but never with a survior. It was a totally different experience. Even as we drove to the Relay I could feel butterflies in my stomach -- a knot that was overflowing with mixed emotions. I was sad that my son could participate in the Victory Lap because it meant that he has cancer, but also happy because Xavier could be there to show he was winning the battle. I was also grateful to see the support of friends and family who donned blue t-shirts brandishing Xavier's picture and Team X.
Xavier was the youngest survivor and we walked along the oldest survivor (she was 99 and still very much with it).
It was amazing to see the sea of yellow as the surviors took to the track, including a few other children. I was again sad to see that so many people must go through this difficult journey, but also happy to see so many people beating it.
We were interviewed by the local newspaper and put on the front page of today's Tillsonburg News. I was somewhat embarrassed and guilty to have the attention, knowing how many other kids going through the same struggles as Xavier. Their stories should be heard too.
I am praying for all of them.
Mark and I are also planning to attend Woodstock's Relay for Life this coming Friday and again walk as a family for the Victory Lap.
Monday, June 7, 2010
Back to Mac
Today Xavier was sent back to McMaster hospital after a hole was discovered in his pic line during radiation this morning.
The line is used every day to sedate him. Because it was leaking, Xavier had to get an IV in his foot. A swab was also taken at his G-tube site to test for infection. It was a bad morning for the little guy.
While at McMaster I ran into an old roomie of Xavier's while going through chemo on 3B. It was a six month old baby with a tumour in her stomach. It was a low grade cancer and her mother was so excited because it was her daughters last round of chemo. Things obviously didn't work out the way they were expected because they were back on 3B. The baby's dad (sorry don't remember his name) said she was in for more chemo and spent another two weeks there because of a blood infection. It was sad to see them back.
This disease is relentless!
The line is used every day to sedate him. Because it was leaking, Xavier had to get an IV in his foot. A swab was also taken at his G-tube site to test for infection. It was a bad morning for the little guy.
While at McMaster I ran into an old roomie of Xavier's while going through chemo on 3B. It was a six month old baby with a tumour in her stomach. It was a low grade cancer and her mother was so excited because it was her daughters last round of chemo. Things obviously didn't work out the way they were expected because they were back on 3B. The baby's dad (sorry don't remember his name) said she was in for more chemo and spent another two weeks there because of a blood infection. It was sad to see them back.
This disease is relentless!
Saturday, June 5, 2010
A weekend back home
Boy does it ever feel good to be back at home! We only spent four days in Hamilton so far, but I have a whole new appreciation for our home here. I never thought I would say this, but "I missed Woodstock." And I think the kids are happy to be home too. They have been in great spirits and napping super good!
Mark left Thursday for a fishing trip with my dad, so I had the twins by myself in Hamilton Thursday and Friday. There were moments I didn't think I could handle it, but I did and I feel great that I managed to get both babies fed, bathed, changed, medicated (Xavier of course) and in bed by 7pm. Unfortunately the night didn't go as smoothly. I couldn't sleep and neither could the twins. Mac woke up several times through the night screaming and Xavier woke up around 3 am and didn't go back to sleep for about an hour. I was one tired momma when I got up with Mac at 5:30 am.
Getting the two to the hospital for Xavier's treatment was also a feat. Xavier was in a great mood until I put him in his car seat to go to the hospital. Poor thing; I think he has already figured out where he is going every morning. But despite a few tears (from the two of us) we made it there with five minutes to spare. Oh and I managed to get a free coffee at Tim's.
Luckily there is a team of wonderful nurses and therapists who help with Xavier's therapy -- and also helped babysit Mac when I needed to be with Xavier Friday.
I hugged him close as he buried his head into my chest while being sedated. Again, before I knew it he was out. I turned around to see Mac there waiting for me. I hugged her tight and kissed her head as I walked out of the room.
I was then taken to a room where I could see everything going on in the radiation room on a TV screen. I didn't know whether to look or not. I glanced a few times, but I was not ready to see Xavier wearing the mask and bolted to the table. I did however watch a black and white screen showing the CT image of his head. Within minutes it was all over with. He went into the recovery room where he woke up about 20 minutes later. He was groggier than usual, and very sleepy.
I then loaded the kids up and headed for McMaster Children's Hospital to see our doctor there. The twins had possibly been exposed to chicken pox the week before and they needed to be sure he wasn't sick. We got the ok and headed for home.
I really appreciate the small things in life now -- more and more every day. I wonder now how I could take all this for granted before.
I have one more night at home before heading back to the condo. But I am not going to think about that now -- it will only make me sad. I am going to live in the now.
Thursday, June 3, 2010
Split in two
I am sure all parents of multiples (whether kids of the same age or different) have felt this way. If only there were two of me to kiss, hug and carry around Mackenzie and Xavier. They both are going through separation anxiety and only want mommy. It melts my heart when they reach for me and extend their arms up to be picked up or snuggle into me when I am holding them. But when they both do it at the same time it is very difficult. Who do I pick up? I have tried both, but they want mom all to themselves. Sharing me is not an option. I feel bad not picking up Mac first beacause she has come second ever since Xavier has been sick. But on the other hand, Xavier has been through so much and probably needs mommy more. But then Mac's life has not been perfect either going from this person to that person and not seeing mom and dad for days while we stayed with Xavier in the hospital.
There is no doubt that Mac is jealous of her brother. She sees the "extra" attention he gets every day. I try hard to give her extra hugs and kisses too whenever I can, but it still doesn't amount to the special care her brother now requires. I just hope this doesn't harm her in the long run. She is already so independent.
If anyone has any suggestions, I would love to hear from you!
Radiation begins
On Wednesday Xavier started radiation therapy at the Juravinski Cancer Centre beside Henderson Hospital in Hamilton.
It was a family affair. Mark, Mackenzie and I were all there as Xavier took a step closer to becoming cancer-free.
Arriving just after 7 a.m., the radiation department was still dark -- much like our thoughts that morning. I was scared and I am sure Xavier was too. He started off smiling as nurses told him how cute he is and handed him toys. It wasn't until we went into the radiation room and sat him on a table in front of a machine that looked much like a CT or MRI machine. That's when he broke down and I began to crack. The poor little guy had been stripped down to his diaper while strangers hooked him up to a monitor, taping leads to his chest and feet. His mask, mapping out where the eight radiation beams will strike was beside him. An IV had already been started and before I knew it he was being sedated. His head and shoulders fell limp in the nurses hands as she layed him back on the table. I stood beside him for as long as I could. Mark and Mac stood behind me.
I held back tears as we left the room.
Every time I see Xavier sedated, which has been many times, I want to cry. He is so helpless, so innocent and so precious.
The radiation itself was quick but a few adjustments to his mask had to made on day one, which kept him sedated for more than two hours. He woke up happy, but became very irritable in the afternoon until he went to bed in the evening. We were told not to expect to see any side effects for about two weeks, however the sedation can make him cranky.
Our entire routine/schedule has been thrown out the window again. I can't help but feel defeated. I worked so hard to get the twins on the same schedule and form good sleeping habits, but now it is back to square one. All for a good cause, I suppose, but it's hard to remember that when you see your son struggle every day with treatment.
I will continue to take this day by day and only hope it doesn't take long to carve out a new routine that works for all of us. That is until treatment is over -- 31 sessions to go.
It was a family affair. Mark, Mackenzie and I were all there as Xavier took a step closer to becoming cancer-free.
Arriving just after 7 a.m., the radiation department was still dark -- much like our thoughts that morning. I was scared and I am sure Xavier was too. He started off smiling as nurses told him how cute he is and handed him toys. It wasn't until we went into the radiation room and sat him on a table in front of a machine that looked much like a CT or MRI machine. That's when he broke down and I began to crack. The poor little guy had been stripped down to his diaper while strangers hooked him up to a monitor, taping leads to his chest and feet. His mask, mapping out where the eight radiation beams will strike was beside him. An IV had already been started and before I knew it he was being sedated. His head and shoulders fell limp in the nurses hands as she layed him back on the table. I stood beside him for as long as I could. Mark and Mac stood behind me.
I held back tears as we left the room.
Every time I see Xavier sedated, which has been many times, I want to cry. He is so helpless, so innocent and so precious.
The radiation itself was quick but a few adjustments to his mask had to made on day one, which kept him sedated for more than two hours. He woke up happy, but became very irritable in the afternoon until he went to bed in the evening. We were told not to expect to see any side effects for about two weeks, however the sedation can make him cranky.
Our entire routine/schedule has been thrown out the window again. I can't help but feel defeated. I worked so hard to get the twins on the same schedule and form good sleeping habits, but now it is back to square one. All for a good cause, I suppose, but it's hard to remember that when you see your son struggle every day with treatment.
I will continue to take this day by day and only hope it doesn't take long to carve out a new routine that works for all of us. That is until treatment is over -- 31 sessions to go.
A sad reality
This week our family has moved from our nice suburban home in Woodstock to a small condo in downtown Hamilton to be closer to the cancer centre for Xavier's next phase of treatment.
It has once again been an emotional roller coaster.
Generally I like moving, sounds crazy, but I just can't seem to stay in one place long enough. However, this is one move I did not want to make. Hamilton, for one, is not my city of choice, and two, it just isn't home in this now 850 sq-foot condo. The area is not so hot either. I wouldn't dare take the kids for a walk along James Street (only blocks away from where a pregnant woman was recently shot during a convenience store robbery ). I step outside and hear the roar of traffic and the hum of electricity. Right now I hear the train pulling in at the Go station beside our apartment building.
Although my surroundings are not what I would call luxurious (albeit Chateau Royale claims it is) I don't think my upset has anything to do with the actual place. It is coming to the sad reality that Xavier's world is upside down again -- and now a daily reminder that he has brain cancer.
For a month, while he was recovering from his chemotherapy, it was almost normal again (aside from the pharmacy in our kitchen and his tube feeds). Xavier and Mackenzie played side by side, fought like brother and sister and happily drummed together on our glass table at meal times. It was heartwarming to see them together since they had been apart for so long. I felt like a mom of twins again -- and as much work as they were together, I was happy.
It has once again been an emotional roller coaster.
Generally I like moving, sounds crazy, but I just can't seem to stay in one place long enough. However, this is one move I did not want to make. Hamilton, for one, is not my city of choice, and two, it just isn't home in this now 850 sq-foot condo. The area is not so hot either. I wouldn't dare take the kids for a walk along James Street (only blocks away from where a pregnant woman was recently shot during a convenience store robbery ). I step outside and hear the roar of traffic and the hum of electricity. Right now I hear the train pulling in at the Go station beside our apartment building.
Although my surroundings are not what I would call luxurious (albeit Chateau Royale claims it is) I don't think my upset has anything to do with the actual place. It is coming to the sad reality that Xavier's world is upside down again -- and now a daily reminder that he has brain cancer.
For a month, while he was recovering from his chemotherapy, it was almost normal again (aside from the pharmacy in our kitchen and his tube feeds). Xavier and Mackenzie played side by side, fought like brother and sister and happily drummed together on our glass table at meal times. It was heartwarming to see them together since they had been apart for so long. I felt like a mom of twins again -- and as much work as they were together, I was happy.
Saturday, May 22, 2010
Tragedy strikes
When I initially had twins I thought life would never be the same. I fully anticipated having two babies would be the biggest life changing event ever. I was wrong.
On Feb. 1, 2010, life as I knew it stopped. That is the day a massive tumour was found in my eight-month-old son's head. Our family would never be "normal" again.
Xavier had been sick for a long time and I had vowed I would not leave our next doctor's appointment without some answers. I got answers, but not the ones I wanted to hear.
That day Mark took Xavier to emerg while I stayed with Mackenzie. Our pediatrician was meeting Mark at the hospital. I waited to hear from Mark and when I did he texted me a message that Xavier was going for an emergency CT scan..."doc thinks it's in his head." That message alone sent shivers down my spine. I knew it was bad. I quickly made some calls - barely keeping myself from crying - and got Mac taken care of while I headed to the hospital.
In the car I told myself over and over again I will not bury my child. I stand by that statement today and forever.
To make a long story short (will fill in the details later) Xavier underwent 12 hours of brain surgery on Feb. 2, 2010 to remove the tumour that had wrapped itself around his brainstem and was headed down his spinal cord. About 75 per cent of the tumour was removed. The rest was too risky to take out.
On Feb. 10, my birthday, we were told Xavier had a rare, aggressive cancer called anaplastic ependymoma. Those words will never be forgotten nor will the sick feeling in my stomach. Prognosis was poor.
Xavier has undergone two cycles of chemotherapy, which were very difficult for him. He is scheduled to start radiation on June 1.
Will keep you posted.
On Feb. 1, 2010, life as I knew it stopped. That is the day a massive tumour was found in my eight-month-old son's head. Our family would never be "normal" again.
Xavier had been sick for a long time and I had vowed I would not leave our next doctor's appointment without some answers. I got answers, but not the ones I wanted to hear.
That day Mark took Xavier to emerg while I stayed with Mackenzie. Our pediatrician was meeting Mark at the hospital. I waited to hear from Mark and when I did he texted me a message that Xavier was going for an emergency CT scan..."doc thinks it's in his head." That message alone sent shivers down my spine. I knew it was bad. I quickly made some calls - barely keeping myself from crying - and got Mac taken care of while I headed to the hospital.
In the car I told myself over and over again I will not bury my child. I stand by that statement today and forever.
To make a long story short (will fill in the details later) Xavier underwent 12 hours of brain surgery on Feb. 2, 2010 to remove the tumour that had wrapped itself around his brainstem and was headed down his spinal cord. About 75 per cent of the tumour was removed. The rest was too risky to take out.
On Feb. 10, my birthday, we were told Xavier had a rare, aggressive cancer called anaplastic ependymoma. Those words will never be forgotten nor will the sick feeling in my stomach. Prognosis was poor.
Xavier has undergone two cycles of chemotherapy, which were very difficult for him. He is scheduled to start radiation on June 1.
Will keep you posted.
Sunday, January 31, 2010
Day 8: Xavier is still sick
I am getting really worried now. Xavier has not been eating well for more than a week and continues to vomit at least every other feed. He is sleeping A LOT but waking frequently from what appears to be stomach pains. It is extremely hard to see him like this. We have another appointment with the pediatrician and hopefully we can get to the bottom of this.
And not only am I sick with worry for Xavier, I feel terribly guilty and bad for Mackenzie who has had a lot less of mom and dad's attention these days.
And today she started crawling! Although they are twins, these two are on complete opposite spectrums right now. It is difficult to see one thriving and the other falling behind.
But I am so excited and so proud of Mack. It is just adorable to watch her pull herself across the floor (it is a sloppy crawl, but she is still learning).
As exhausting as it will be, I can't wait to see both Mack and X crawling around our house.
And not only am I sick with worry for Xavier, I feel terribly guilty and bad for Mackenzie who has had a lot less of mom and dad's attention these days.
And today she started crawling! Although they are twins, these two are on complete opposite spectrums right now. It is difficult to see one thriving and the other falling behind.
But I am so excited and so proud of Mack. It is just adorable to watch her pull herself across the floor (it is a sloppy crawl, but she is still learning).
As exhausting as it will be, I can't wait to see both Mack and X crawling around our house.
Thursday, January 28, 2010
Caring for a sick baby
There is nothing worse (at least I have found so far) than knowing your baby is sick, but not knowing with what. Not only have I had to watch my poor little boy violently vomit over and over again, but I had to watch as nurses took blood from his tiny little arms yesterday. The first time they did it (yes they had to do it twice, poking both arms the first time) I stood out of view, but could still hear Xavier screaming. It was a gut-wrenching feeling, one that broke my heart. When they came back for more blood I had to stay and try my best to console my sick boy.
I almost started crying as I sang twinkle twinkle little star to him while they poked his now bruised arm for blood.
Over the past week, Xavier has not been eating well, throwing up and been lethargic. He has lost a pound (was 18lbs9oz not 17lbs12oz) and lost all interest in play. He and his sister are turning eight months soon and Xavier acts nowhere near this age. I fear his one and off again sickness since November is holding him back.
After several hours in the emergency department, our pediatrician relieved some of our worries. His blood work, specifically the white/red blood cell counts were normal as well as his sodium. If these had been skewed, we could have been looking at some pretty serious diseases.
While there are still many unaswered questions, and Xavier is still sick, we are somewhat releived.
The doctor is now looking at whether or not he has Norwalk virus -- something we would just have to wait out. However, he is already four days into it and still not improving.
Hopefully my next entry will be more positive!
Please send your prayers to my little man.
I almost started crying as I sang twinkle twinkle little star to him while they poked his now bruised arm for blood.
Over the past week, Xavier has not been eating well, throwing up and been lethargic. He has lost a pound (was 18lbs9oz not 17lbs12oz) and lost all interest in play. He and his sister are turning eight months soon and Xavier acts nowhere near this age. I fear his one and off again sickness since November is holding him back.
After several hours in the emergency department, our pediatrician relieved some of our worries. His blood work, specifically the white/red blood cell counts were normal as well as his sodium. If these had been skewed, we could have been looking at some pretty serious diseases.
While there are still many unaswered questions, and Xavier is still sick, we are somewhat releived.
The doctor is now looking at whether or not he has Norwalk virus -- something we would just have to wait out. However, he is already four days into it and still not improving.
Hopefully my next entry will be more positive!
Please send your prayers to my little man.
Wednesday, January 27, 2010
Building vocabulary
Mackenzie said her first words today!! As much as I would have liked her to say mama, she said dada and baba. It was so clear considering up to this point she would only make funny noises with the spit in her mouth.
I am so proud of my little girl. It's funny how these "small" accomplishments are so exciting when you are a parent hearing it for the first time.
Unfortunately, Xavier has not been well and is still working on his vocabulary behind cries and squeals of enjoyment.
I am so proud of my little girl. It's funny how these "small" accomplishments are so exciting when you are a parent hearing it for the first time.
Unfortunately, Xavier has not been well and is still working on his vocabulary behind cries and squeals of enjoyment.
Tuesday, January 26, 2010
Getting the news!
(First ultrasound at 5.5 weeks pregnant)
After nearly 14 months of trying to get pregnant, Mark and I were elated to get the news from my doctor that I was pregnant.
Two home pregnancy tests had been positive, but we weren’t about to set ourselves up for another disappointment. We learned early that peeing on a stick was not always accurate.
Another test was in order. Again, my levels were high.
I then went for an ultrasound to yet again confirm the pregnancy. I had told my husband not to come; it was too early to see anything anyways — or so I thought. While twins were a possibility, I didn’t actually believe it would happen to us.
The conversation with the ultrasound tech went like this:
Me: “So can you see anything yet?”
Tech: “Yes, I can see the two sacs.”
It took a second to register. I didn’t know much about pregnancy, but I didn’t think there was supposed to be two amniotic sacs for one baby.
Me: “Two sacs?”
Doc: “Yes. Do you have twins in your family?”
Then it hit me… I had two babies inside me!
The doctor had said this assuming I already knew it was twins. I assured him I was oblivious.
I fell silent as he finished the ultrasound. Inside, I was screaming.
How was I going to do this? For the longest time I didn’t even want children and then had decided I would be missing out on something if I didn’t at least have one.
Anyways, I couldn’t reach Mark. He was supposed to have his cell phone on so I could give him the confirmation whenever I got it. I was getting frustrated. Here I had this incredibly scary news to tell him and I couldn’t get a hold of him. I knew I had to tell him first or he would be mad, but I thought about calling my mom.
When I finally got him on the phone, I was back at work sitting at the courthouse waiting for a verdict in a trial I was covering.
“You got what you wanted…” I told him.
He didn’t understand so I spelled it out — WE ARE HAVING TWINS!
He was speechless.
That night we both didn’t sleep well.
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