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.

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!

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.

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!

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.

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.