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.
Friday, November 26, 2010
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.
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