On to the next cycle...

It's been awhile since I blogged last. I am still in Hawaii with my family. There are currently 13 of us here with another 18 extended family arriving today. The weather has been great with lots of sun! I am unfortunately sick with a terrible cold. I think this might be the first time I've been so sick in a couple of years. I think the stress of the last six months is finally catching up with me. Hopefully just a few more days and I'll be back to new.

Now, on to Kavan. He had a great Christmas with his family. I was very sorry to miss it.










He's feeling better after his stint in the cross cancer institute but remains on some pretty heavy duty antibiotics. I think, at times, he feels pretty groggy from all these medications.

Today he had another follow up with his oncologist to determine whether or not he is fit to have chemotherapy next week. The good news is that his blood counts are high enough that he can start his next round of chemo. While this is good news, I am somewhat apprehensive about Kavan starting his next round due to the events of the last couple of weeks. I am hoping that as his radiation is further and further away that he starts to bounce back more quickly.

Have a good weekend all!



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Location:S Kihei Rd,Wailea-Makena,United States

He's free!

I am happy to report that as of 2pm today Kavan was released from the hospital. He's white blood counts have somewhat stabilized and though they are still far from normal, they are now at a safer level. This news made me so happy. I feel as though I can enjoy my time in Hawaii now, though it seems that I frequently think how much Kavan would enjoy it here.

I miss you already kav!



- Posted using BlogPress from my iPhone

Location:S Kihei Rd,Wailea-Makena,United States

Day pass

Today Kavan's neutrophils climbed to 0.6. Almost enough to warrant discharge from the hospital. He was given a day pass from the hospital, meaning he was well enough to go home for the day. He's required to return for the hospital for the night in order to ensure he remains well.

Let's all cross our fingers that he is completely discharged from the hospital and he can put this whole ordeal behind him.

I am writing this and the next bunch of posts from the island of Maui. It was extremely difficult to leave Kavan and I was quite upset yesterday. It was a tough decision. My entire family has decided to spend Christmas in Hawaii and as family members age these types of holidays are especially meaningful. So, for the next couple of weeks Kavan and I will have to chat over FaceTime and text messaging. Kavan, I love you and miss you already!


- Posted using BlogPress from my iPhone

Location:S Kihei Rd,Wailea-Makena,United States

Good Spirits

Just a quick note. Just got home from visiting Kavan at the Cross Cancer Institute. Happy to report he remains in good spirits. I have to say that he is looking better. Much better colouring! He still is a bit sniffling and has a slight cough but he seems to be fairing better.

Hmmmm....what exactly does this program entail???

Let's all hope for good news tomorrow! Come on white blood cells

Another Hospital Day

Well, Kavan remains in hospital for a second day. It appears as though there will be a third, as well. He sounds a bit sniffly today but is otherwise in good spirits. I am happy to say that his neutrophil level has gone from 0.3 to 0.6 which is definitely a step in the right direction.

Kavan & Patrick

Kavan is still receiving antibiotics around the clock and having blood taken to monitor for infection. Thus far, nothing has come back indicating a definite infection but he will need to receive antibiotics until they are absolutely certain he is no longer at risk. His platelet level is currently quite low which is also a concern. Platelets are the component of blood that helps with clotting. Low platelet levels are concerning because it increases the risk of prolonged bleeding. There is a possibility that Kavan might require a transfusion in the next few days in order to bring up his platelet count.

So, another night to spend in the hospital. Let's all continue to will Kavan's WBCs to increase so he may be released from hospital.

Patrick enjoying some early Christmas Gifts

Admitted

Well, it really was inevitable. We all knew the day would come that Kavan would catch a bug and end up admitted to the hospital. I am very sad to report that last night Kavan spiked a fever of around 39 degrees Celsius and needed to be taken to the emergency room. At the start of this whole ordeal, Kavan was given strict instruction to go to ER if his temperature reached 38 degrees.

So, off he went in the middle of the night. He had a chest x-ray, and blood taken. Kavan's father told me the chest x-ray was clear. His blood work, however, was outside of normal ranges and this necessitated admittance to the hospital. A side effect of Kavan's chemotherapy is a reduction of immunity via a lowering of the cells that fight infection, White Blood Cells. A specific type of white blood cells, neutrophils, were extremely low for Kavan. This is very dangerous and means he is susceptible to infection. After these results were received, it was decided that Kavan would remain in the hospital for a few days for close monitoring and administration of antibiotics. As of right now, Kavan may remain in hospital for three to four days.

Though this was somewhat expected, it certainly did not make it easy for any of us. I know Kavan is exhausted from the events of the last 24 hours. He looks tired and really just wants to be left alone to rest. I know I was quite upset when I heard the news that Kavan was to be admitted for several days. It is difficult to see someone you love so much sick. It's even more troubling to know that there is really nothing you may do for them. As someone who is so accustomed to nurturing/healing others, my inability to help Kavan in this situation has been difficult.

Mark & Kavan
Thanks for the visit Mark!

Again I was amazed at Kavan's attitude throughout all of this. Though he's quite tired, he is in good spirits. He remains just as positive as ever. In fact, he was so positive this evening that he gave glowing reviews to the hospital food he received at supper time. I think this may be the first time I've ever heard someone give hospital food the thumbs up. He was especially excited that he received 2 cups of ice cream. I really do need to take a page from Kavan's book and look at the bright side of life.


So, please send your thoughts and prayers Kavan's way. Let's will his white blood cells to increase. I know he will be hoping for the same thing all night tonight. More to come...

Good News

Another weekend has flown by. Kavan had a bit of a rocky week. He's been feeling quite nauseous since his chemotherapy on Monday. Not so much that it has significantly impacted his day-to-day functioning, but just enough that he feels lousy.

His ankle/left foot has healed remarkably well. He has now ditched all of his walking aids and is cane/wheelchair/walker free. It's a nice feeling to see him on his way back to normal. His daily wound care is winding down and he's been told that in another week he can venture back to the swimming pool. I know he's been struggling with the fact that he's not been able to really work out. Maybe that is why he's been feeling so lousy this week. His usual routine was to work out following chemotherapy as he says this makes him feel better.

Kavan's foot as of Sunday afternoon

So, now on to the REALLY exciting news! Kavan proposed to me this past Friday evening. Of course I said yes! We are ecstatic and looking forward to beginning our life together. It has been nice for just even a moment to forget about the C word and the events of the past six months. I am thrilled and couldn't have asked for a better guy. He amazes me everyday and his love of life is contagious. I don't know anyone quite like Kavan. He finds humor and happiness in even the smallest of things. I can say that he is truly my best friend and biggest supporter.

I guess Kavan's been thinking of proposing for quite some time. I was surprised to hear Kavan had the ring since August. A BIG thank you to Kavan's aunt from England, Auntie Marcelle, for helping Kavan pick out such a perfect ring. It's funny that he knew what I want even before I did. I really couldn't have done it better myself!

It's funny that pretty much immediately following the engagement, people inquire as to when the big day will occur. Kavan and I have briefly discussed this and we've come to the consensus that it will likely be summer of 2014. By then, he will have both his hair and eyebrows back and I will hopefully be done with my masters. We will have about 18 months to plan and will hopefully with all of this time avoid stress. I think we'll look at firming up some of the details in the new year.

Kavan in Gap Kids....Little head!

And now on to the final week before Christmas.....

Sick Day

Kavan received his one day cycle of chemotherapy yesterday. That's the Doxyrubicin, Cyclophosphamide and Vinecristine. The nasty bunch.

He was feeling a bit nauseous yesterday and decided to take it easy last night. I spoke with him early this morning and he has decided to remain home from work today. He was unable to fall asleep until about 3:30 am this morning. Those darn steroids at it again! He was also feeling quite nauseous. So, today he will take a sick day from work and rest at home.

Kavan during Chemotherapy yesterday

He is scheduled for physiotherapy later today, so let's all cross our fingers that he is well enough to attend.

Week 23

Wow. It's been a LONG time since I've written a blog post. In the time that's passed since Monday Kavan has undergone tremendous healing. It's hard to believe you're even looking at the same leg or even guy. I'm happy to have my old Kavan back, he seems to be back to his old self. Thank goodness for that.

Each day this past week Kavan had a visit with the homecare nurse to tend to his radiation wounds. If there has ever been a time in which I have been over the moon thankful for our Canadian healthcare, it has been now. I can't say enough how fortunate we are to receive the healthcare services we do.

Bobo nibbling Kavan's toes

Progressively, Kavan's wounds have healed.His swelling and soreness present at the start of the week has slowly dissipated. He can even manage without the cane!! I have such respect for those who regularly use a cane, walker or wheelchair. It seems to be the most difficult thing in the winter. It certainly has made me appreciate my good health.

Kavan relaxing at the cabin

On Friday Kavan had ANOTHER visit with his oncologist. They had delayed chemotherapy by a week due to his foot, but good news this time, he will proceed as planned. His oncologist did comment that his bloodwork reflected the fact that he had been fighting some sort of infection. Likely, the one in his foot. So it seems that those antibiotics really did their job.

Lac La Biche

Kavan's cancer, Ewing's Sarcoma, really is extremely rare in his age group. He literally is, three in one million, if not even rarer. He was recently approached by a researcher wanting him to donate his tumor to a national tumor bank. As well, a few months ago, someone from Hong Kong wanted a slice of the tumor. Kavan's really gaining notoriety as some type of cancer celebrity. Seems weird, doesn't it? So, he will donate parts of his tumor to these two separate researchers in an attempt to help others inflicted with the same cancer. And then, he will be in two places at once....It's funny to think that at this exact moment Kavan's tumor is in some jar in some lab floating around....A very strange thought...


Anyways, on to the weekend. On Friday we headed up, along with our friends Jakub & Lindsay, to my cabin at Lac La Biche. We braved the frigid temperatures and managed to enjoy a beautiful, relaxing weekend. Sometimes it's just nice to escape the city and its busyness. We even managed a nature jaunt, Kavan fared tremendously well. He's almost back to his normal self!

Kavan's foot during dressing change tonight...looks great!

Now, on to the next cycle of chemotherapy tomorrow. It's just the one day treatment this time, which Kavan has not had for a number of months because of his radiation. Let's all cross our fingers that Kavan's treatment goes well tomorrow and he continues to heal as well as he has been! Have a good week!

A Case of the Mondays

Another weekend over...why do the weekends seem to pass so much more quickly than the weekdays?
After a great weekend, Kavan and I were both back to work today. I am finally finished the LAST paper of my first semester of graduate school. It's a good feeling!

Friday, Kavan and I, had my brother and his girlfriend, Layla, over for supper. Afterwards, we went out for awhile to a local pub on Whyte Ave. Now that Kavan has a wheelchair, it has been much easier for us to get out.

Saturday night Kavan had a video game night with the boys. He was able to enjoy this from the comfort of his own home, so the foot pain wasn't so much of an issue.

Sunday afternoon we ventured out to the Festival of Trees in downtown Edmonton. We took Kavan's nephew, Patrick, and he had a ball. It was nice to get out and start to enjoy the Christmas season.

So, now on to an update on Kavan's foot. He remains on both oral and topical anti-biotics which seem to really be helping his wound heal. He had several large blisters on his foot that popped over the weekend. Kavan said this provided tremendous relief as he felt that pressure was released. His wound remains fairly gross looking, but I am feeling good about the healing thus far. It seems like there have been positive, small changes on a daily basis. I can't wait until he is back to normal!

Tonight, we are off to see the new James Bond movie. This was not my choice whatsoever. Nowadays, it's fairly easy for Kavan to guilt me in to activities that I don't want to do....I guess there are some benefits to all of this.

Postponement

This morning Kavan had his check-up with his oncologist, Dr. Chu. The good news was that his blood counts were within normal limits. The bad news is that his chemotherapy, originally scheduled for Monday, will be postponed due to his foot. Dr.Chu is worried that giving Kavan chemo on Monday would lower his ability to fight infection, leaving the door WIDE open for an infection in the open sore on his foot.

Ouch! Kavan's VERY swollen foot & leg

While I am upset that this will delay treatment ANOTHER week, I recognize the need to be careful with Kavan's fragile body. It's best to ensure that he is well enough before subjecting him to another round of chemotherapy.

Kavan's also been started on an oral antibiotic, Keflex, to ensure no infection develops in his foot. Though I feel that it is slowly starting to improve, there remains significant risk of infection. Better to be safe than sorry because Kavan's sorry could involve a week in the hospital.

Let the healing begin....more blisters and a bad sunburn

Kavan will also have home care nurses visit him to tend to his wound. I am relieved to hear this as the responsibility is off me to make sure things are not getting worse. Better to have the experts deal with this!

As I was curious, Kavan also spoke with his oncologist about when the next scans would occur. Right now, because of the large amount of swelling in his ankle, a scan would not be that useful. It would show lots of activity in his ankle because of the swelling and you would not necessarily be able to see if there were cancerous cells present. Dr.Chu told Kavan that he will have another MRI and PET scan in about 6-9 weeks when the area is completely healed. I am hoping it doesn't take that long!

So with that, Kavan is off to work. Despite my recommendations that he stay home, he wants to go to work. What resilience!


And now, on to the weekend!

Our small but beautiful christmas tree

Week 21, Day 3

Kavan remains in considerable pain. He says that his foot is extremely swollen and the sore on the back of his ankle remains open and oozing. He continues to have difficulties in mobilizing and just really wants to sit and elevate his foot. Ouch!

Despite all of this, he gets up and goes to work each day. I actually told him this weekend that maybe he should consider staying home this week. He felt that he wanted to go because he didn't want to let his employer and clients down. If that isn't a prime example of perseverance, then I don't know what is. Words cannot fully express how proud I am of him. He's truly a model for all of us.

Today Kavan and I had a conversation about how he's been doing lately. Of course, as per usual, Kavan said he was doing well, "I'm good". I said back to him, "you know it's ok to say that you're not doing well, right?".  He replied that he thought he was good so that is what he would tell people. While I am happy that he is "good", I think that some people forget the gravity of Kavan's situation. At the end of the day, he is fighting a life-threatening cancer and it is alright to not be "good" each day. I appreciate his positive nature and will to proceed with normal life but hope that he asks those around him for help when needed. I know that this past month and a half of radiation treatments has really taken a toll on him. Kavan is an active individual who so much enjoys sport and exercise. He really hasn't been able to engage in any of those activities since the start of radiation and I believe it's been really hard on him. He might not say so outright, but I can see it. So, let's all hope that these next few weeks pass quickly, his ankle heals, and he may resume the activities he so loves.

I guess this is one of the perks of radiation....a scooter at Wal-Mart

Congratulations....you've won a walker!

So, finally some good news. Kavan's foot is NOT infected. He zipped off to the Cross Cancer this morning and had an opportunity to meet with his radiation oncologist. Despite the stinky smell, she's confirmed that he does not have an infection. I was overjoyed to hear this news as the nurse in me had my mind going wild and thinking about widespread sepsis.

Kavan was given an anti-biotic cream to put directly on his ankle to prevent any infection but the doctor , right now, is happy with the way things are healing. In other news, Kavan has received a walker to help him get around. True to Kavan fashion, one of the first things he did upon telling me was crack a joke. Gotta love the positive attitude. Kavan remarked that when using the walker outside the Cross that some seniors had been extra nice him and even stopped to wish him a good day. I never knew what power a walker really had. It's nice to see him bonding with those who he now shares some commonality.

Kavan was also given the prized disabled sticker for his car. This is something that he's been needing for quite a while now. It's been hard seeing him struggle while mobilizing through snow-filled, icy parking lots. Just yesterday, he almost wiped out on the ice as his cane slipped. Eeeek!

There's the good news for the day. I, myself, must now get back to my final paper of the semester.

Kavan and I at his graduation

Mixed Bag

Mr. Fat Foot is back again

Kavan has FINALLY finished radiation. Twenty-eight days of radiation complete. While I'm so glad that this awful stage in Kavan's treatment is now complete, I have fear of the pain he will endure in the coming weeks and even permanently, in the future. Kavan's radiation oncologist has informed him to expect his pain to worsen in the coming weeks, as his body attempts to recuperate. I have to say, he was in quite a bit of pain this weekend, back to around the same levels he experienced following his initial surgery. It's difficult to see someone you love so much in pain and not be able to do anything about it.

Ouch!

Looking at Kavan's ankle in photos or even in person, it is evident how damaging the radiation has actually been. His ankle is covered in several bruises, painful to even the lightest touch. He has also developed a sort of blister on the back of his ankle. It has now popped and is weeping fluid continuously. My fear today is that he may have developed an infection. It's starting to have that certain kind of smell. Hopefully, Kavan's radiation oncologist will be able to see him tomorrow to ensure he is healing as needed. The last thing he needs right now is to develop an infection when his immunity is so low.


Now, on to this weekend's events. Friday night Kavan was experiencing tremendous pain. He was not even able to leave the house that evening. He had such high hopes of celebrating the completion of his radiation but could not even endure walking from house to car. This made me extremely sad. Saturday night we celebrated Kavan's older sister's, Kerri-Ann's, 30th birthday! We had dinner at an excellent Lebanese restaurant and I even dared to try some new food.

Patrick, Kerri and Kavan

Tonight we had a birthday dinner for Kerri during the traditional Sunday night dinner at the Hyde's. It was so nice to be able to celebrate Kerri's birthday.


Keep your fingers crossed for Kavan. Have a good week!

Patrick decorating the Christmas Tree

Kavan looking happy as always

TWO DAYS LEFT!

WOW. Kavan has two more treatments in his radiation therapy. I'm so glad this is almost over. I think this has been the hardest, most painful thing Kavan has dealt with besides the initial surgery. To me, it seems that he has been the most down during the past 25 treatments of radiation. It has impacted him physically more than the chemotherapy has up to this point. It's really restricted him from engaging in his favorite activities such as swimming or working out.

So, this friday we will break out the champagne and celebrate. This is one more thing we can check of the list and hope to never EVER encounter again. I'm thankful that Kavan does not require radiation of his brain or torso. As much as this has been a terrible experience, I am thankful it is his leg and not his head that is receiving the zaps.

One of my favorite photos of Kavan...enjoying some time @ the lake

I have to say once again how impressed I am with Kavan. I think I might complain more about this than he does. Though he does seem a bit down at times, he's largely his happy old self.

A recent photo of Kavan's ankle-Ouch!

Today Kavan FINALLY had a consult with a physiotherapist. This is something that should have been done months and months ago. It sounds like he will receive quite intensive physiotherapy possibly up until a year and a half from now. When Kavan's tumor was removed back in June, they took some of the muscle with the tumor to ensure every last bit of the tumor would be gone. Now, I'm far removed from my nursing anatomy courses so I couldn't tell you which muscles exactly were effected. The physiotherapist noted a significant difference in range of motion between Kavan's feet/legs. I am thankful he will now have an expert monitoring his progress and ensuring he is doing everything he can to get back to normal.


Let's cross our fingers the next two days go well so we may all kiss this radiation good-bye. Not even good-bye, more like good riddance!

Kavan and I this summer at a wedding

Week 20

Wow, this week already marks Kavan's 20th week of treatment for Ewing's sarcoma. On one hand it feels like this has all moved pretty quickly, but it also feels like a never-ending nightmare that we just can't wake up from.

Kavan has been having quite a bit of pain around his radiation site. He needs to use a cane to walk and requires very loose fitting shoes. Today he was back to work after being away for a week. I think he was glad to be back but found it difficult to get around the office.

The foot bath-Kavan's new best friend

Kavan had another radiation treatment today and so after today's treatment he only has FOUR days left. Thank goodness it's almost over. I can't wait to see him get back to his old self and the activities that he loves.

Let's hope this is a quick week!

Weekend

Thank god it's the weekend and another week of chemotherapy and radiation is over. Kavan's now had 23 days of radiation, that's over 80% done. He will finish his course of radiation this upcoming Friday and I think it will be time to break out the champagne and celebrate!

Wigging Out: Patrick and Uncle Kavan

Of everything Kavan's been through this far, I think he's finding the radiation most difficult. Much of this weekend has been spent in a laying position with alternate ice and heat on his ankle. Lately, he's been finding it increasingly difficult to walk and reports almost constant pain on the area. He's even been taking some Advil and aleeve. You know it must be bad for Kavan to actually take a pain killer, he's usually to stubborn and resistant to do such a thing.

Kavan in his winter wear

So, hopefully the pain will cease once the radiation is complete. Kavan has a consultation with a physiotherapist near the end of the week and I am hopeful they may provide him with some exercises to regain his strength and flexibility in his ankle.

Chemotherapy went well this week. Kavan is now an old pro. His days are quite regimented and he seems to follow the same pattern every day.

• Arrive at Chemo @ 8:15am
• Chemo starts @ 8:30am, Does the nurse looking after him count down before sticking him with the IVAD needle? (Seriously, everyday I hear about this!)
• Nap from 8:30-12:30pm
• Eat Lunch
• Play on iPad or gameboy
• Nap some more
• Done Chemotherapy @ 3:30pm

He seemed to tolerate this week of chemotherapy and I couldn't be happier. Now, it's back to work with a break from chemo until December 3rd!!

Kavan and his best friend Evan
Evan has visited Kavan @ the Cross Cancer Institute for almost every cycle of chemotherapy

Kavan and I celebrating Evan and Kristin's birthdays

Week 19 Day 2

Today was a better day. The swelling on Kavan's ankle has gone down and he is feeling less pain. He had radiation today following his chemotherapy, so I am hoping that things do not worsen once again.

Kavan's sore ankle. The darkened area is a very sore bruise!

Kavan's incision with radiation sticker.

I have never felt such an appreciation for those who use canes/crutches. This activity is especially precarious in the winter time and I can't imagine feeling safe while walking with a cane on ice. Kavan now has a beautiful new pair of winter boots to wear as he had no suitable footwear and the pain in his foot was making it difficult to wear just any pair of shoes.

Kavan's chemotherapy went well today. He was again in good spirits and did not seem bothered by the whole thing. He's so positive about it all and really looks on the bright side of things. For instance, I think today he was most happy about taking a three hour nap whilst in his lazy boy during chemotherapy. This serves an important reminder to us all to find the beauty in even the simplest things.

So now it's eight days left of radiation and another three days in this chemotherapy cycle. Let the countdown begin.

Kavan sitting comfortably in his lazyboy @Cross Cancer Institute

Week 19, Day 1

Another week down in Kavan's fight against Ewing's sarcoma. As we said goodbye to week 18, week 19 started and with it another five days of chemotherapy. Unlike the majority of Canadians, Kavan did not receive a statutory holiday from chemotherapy. Bright and early this morning he was at the Cross Cancer Institute to begin another round of chemo.

So, first the good news. Kavan's chemotherapy went well today and besides feeling tired, he had no other symptoms.

Now, the bad news. The effects of radiation are starting to influence his everyday activities. He's finding it very difficult and painful to move around without some sort of assistance. This is likely related to the fact the radiation is targeting the area around his Achilles tendon. On the back of his foot he now has a very inflammed, sore-looking bruise. This area has become so sensitive to touch that Kavan even hates foot rubs now. Even though we were warned of the possible side effects of the radiation and this should be no real surprise, it's distressing to see Kavan unable to mobilize without his cane. I just want it to be over! Only nine days left, let's hope these days pass quickly. With Kavan receiving chemotherapy this week hopefully he'll be able to relax in bed and rest his foot.

Goofing around with Patrick this weekend