24 February 2013

A strong end, brings a strong beginning...

It's been a busy few days for everyone. On Thursday, Keian's fever held back. They wanted to be sure to cover all the possibilities with his secondary infection, since everything was being returned negative. They took a throat swab to check for strep and we went down for a chest x-ray to rule out infection around his lungs. Yes! I said went down! It was his first time out of his room since February 5th - mind you, he needed to wear a mask, but none the less, it was a very welcomed adventure. It's pretty bad when you consider meandering down to the radiology department an adventure! Keian has grown into himself and his personality quite a bit the last couple of weeks - he was extremely chatty with the radiologist the second the door opened.

Thursday morning also brought some wonderful news - Keian's counts were coming in! Nearly 2 weeks ahead of schedule, and are still continuing to climb, bringing in a number of 6.36 for his neutrophils this morning! He was taken off the GCSF today, so his counts will drop once that happens, but he will likely still remain high enough to avoid becoming neutropenic again. And within a few days, it will begin to climb again.

What does all this mean for Keian, since he is now no longer fevering and tomorrow is the last day for his antibiotics? It means he will be discharged! Anywhere between tomorrow afternoon and Wednesday, we'll be walking out the doors as an inpatient until March 12th. We won't be far, as our 'home' is just across the parking lot!

I was home on Thursday and Friday night while I was packing - thanks to some lovely ladies, I was able to get most of it done before Saturday afternoon arrived. Saturday night, Ryan and I switched off and he went home for the night to finish last minute things.

This morning, we were beyond amazed when over a dozen men showed up to help Ryan move. Two of those men are part of an amazingly beautiful family that have been a wonderful support throughout most of our journey. The other men were firemen that took time from their day to generously help move us! Incredible...that's all I can really say!

Thank you to every single person that have helped us along the way, so far. We're strong, but we're even stronger with you! We love you all more than words can say<3

19 February 2013

You need a blue sky holiday...

Although Keian developed another fever yesterday, he seemed quite energetic and completely himself. It wasn't until I got him up to go pee in the middle of the night that things changed. His throat, which seems at it's worst when waking from a sleep, was so bad he couldn't deal with it. He sat down on the toilet and it killed me to watch as it looked like he was about to pull his skin off, as he cried and screamed in pain. Just as I rushed to push the call button for the nurse to come, he started vomiting, followed by more screaming due to the pain it was causing.

They did warn us that mucositis would be extremely painful, but I wasn't quite prepared for seeing him like this. The nurse gave him morphine, and after a light massage of his back, he fell back asleep. Of course a couple hours later, I called for the nurse again as Keian was snoring - he doesn't snore and the only time I have heard that was just prior to his diagnosis when he had a mediastinal mass obstructing his airway.

Being in the hospital can very reassuring, but it definitely doesn't take away worry. Every day that I'm not at the hospital, it's as if I panic that something will go wrong when I'm not there. Especially at times where he has fevers and infections. Heck, even when I'm right beside him I barely sleep.

When he was born, we were so incredibly happy. He was so well behaved, rarely cried and slept through the night right from day 1 - Ryan and I often reminisce about how we had to set out alarms so that we could wake him up to eat, as many times he wouldn't wake on his own. Not in a million years would I think it would turn from being blissfully happy, to checking nightly to make sure he's still breathing. I can't even describe the feeling.

He woke this morning with a completely normal temperature, and seemingly felt better, but just before lunch, he spiked to 39.4 (103) again. Cultures still haven't came back from his blood, nor from his NPW. The waiting is like walking over hot coals numerous times a day.

I'm starting to get very scared for what is coming - it's coming so close, so fast. March 12th, Keian will be readmitted (hopeful to have a week between this admission and the next, so that he can get some fresh air at least) to begin his transplant conditioning and radiation. On March 22nd, Joren will be admitted and the process will begin. He's been through so much in these past few months and I know things only get more complicated.

Tomorrow we will get the key for the trailer - I am SO incredibly thankful to have the opportunity to stay on-site, while Keian faces the hardest part of his treatment.

Throughout this admission (Since January 29), Keian's spirits have been nothing short of amazing. He's always joking with the nurses, making funny noises and giggling.

Last night, Keian said; "I hate having leukemia and being sick, it's so boring". I can't even believe that the first thing that comes to his mind about his sickness is boredom. I think I could learn a few things from my own little boy...maybe we all could. He's taught me so much already - how to be the kind of Mother he needs, he's taught me patience, he's given me strength and courage to help him to possess those very things, he's taught me what it truly means to have hope and most of all, he has shown me how easy it is to love someone whole heartedly. All this from a little 5 year old.

And just as I was about to post this, vitals were being completed and Keian has yet another fever...it just won't quit and there are still no answers as to why.

"Your illness does not define you, your strength and courage does"

18 February 2013

We must build dikes of courage to hold back the flood of fear

Yesterday I had a great birthday! It started off a little earlier than I would have liked, but the result of that was wonderful! My girlfriend took me to bead works on Granville Island and we made bracelets to support my special boys fight and the day ended just the way I loved it...my little fighter in my arms<3.

I missed Joren so much last night...we spent 3 nights together prior to yesterday and all 3 nights he ended up in my bed for cuddles. It's hard to be absent much of the time from him, especially since he's growing and changing so quickly. That should get a little better once we're out in Vancouver full time through all this. Speaking of which, our social worker just came to inform us that the trailer is finally available. It makes it a little easier for us, as we can start moving our 6 months worth of supplies in there before the end of the month.

We didn't receive the best of news this afternoon. Keian's temperature has been climbing for most of the late morning and is now currently sitting at 38.1 - his blood cultures for his bacterial infection from a few days ago, have now come up negative, but the antibiotics he is currently on are broad spectrum and do not cover all the bases. They've done another blood culture, testing for c-diff and a nasal pharageal wash. I guarantee he will not like the NPW - he is very sensitive with anything to do with his nose, especially since the NG tube has been placed. He will also require another platelet transfusion, of which will be the 8th one since admission on January 29th. They'll be starting him back on vancomycin, before they know what type of infection it is and what it is sensitive to.

The Doctor just came to examine every inch of Keian, as infections can also hide. She also mentioned it is possible that the same klebsiella pneumonae infection has returned and become resistant to the current antibiotics. Wonderful. It seems things just keep creeping in, in more ways than one. For now, he looks well, so they're testing all his bodily fluids and blood for any type of virus, bacteria or fungus.

He loves it when the teachers come to work with him - one is with him now. I know it makes him feel very good when he gets compliments and the first thing she said to him was, "I hear you're brilliant". As a Mom, admittedly it makes me very proud. He's always been a very inquisitive child and very interested in hands on learning. I'm so happy that they have teachers on site that are willing to work with him. As much as I know he loves spending time with Ryan and I, he needs time with others, so that he can have some diversity.

"The world breaks everyone, and afterward, some are strong at the broken places"

I love you more than words can say <3

A Father's love...

Each day, I’m surprised by how well Keian is tolerating treatment and everything that has been thrown his way. It appears as though we can breathe a sigh of relief when it comes to the previously mentioned klebsiella pneumonae. The culture they drew from Keian have since shown negative growth. They’ll keep him on the antibiotics for another two weeks, to ensure it stays at bay. This infection is known to hide in the nooks and crannies of the human body, much like the Leukemia he is already battling. I am beyond proud of the little boy that I love to no end.

This past week or so, we’ve celebrated a couple of days that we would normally outside of a hospital; Valentine’s day and Chantal’s Birthday. We tried to make both as special as we could, while being confined to a hospital room. We try to make each day a great day, but even more so these days with “homemade” cards and presents. For Chantal’s birthday, I helped Keian make a fantastic family picture, which was put into a decorated and hand painted picture frame of his own design. He also made an amazing birthday card all, on his own. I absolutely love to see him put so much time and care into everything he makes. To make the room more cheerful, I went to the gift shop to grab a birthday balloon and ribbons. Keian and I also decided what kind of Birthday cake we should get her. When she came into the room, she looked so happy to see Keian, myself and the “party room” we had. Keian and I sang a rousing rendition of Happy Birthday, which was apparently heard by a few rooms in the ward. Of course we wish we could have taken her to dinner or somewhere fun, but we make the best of that which is given to us. I think we do a great job of that. Not to brag, but we do have a great family that can roll with the punches, or atleast we try to.

This time on the hospital is much different that others. I understand what lies ahead for our little hero, but still. With his numbers so low, Keian is stuck in his room. No open doors, no playroom on 3B, no trip to the cafeteria. His world is his room. It’s hard to see him get frustrated with boredom sometimes. We try our best to keep him busy. Each morning I wake up with him is a beautiful day. He is so sweet, most definitely a morning person. Just hearing him say good morning is better than anything. When one of his doctors came by a few days ago with x-rays, his eyes lit up. He was so attentive and inquisitive. Both her and I were amazed with the questions he asked and the fine details that caught his eye. He’s definitely wise beyond his years and shows a maturity that even some grown men fail to possess. The doctor emailed us a sample of the images, including one that showed gas pockets in his torso; yes we saw his farts and burps...he loved it, but what boy wouldn't.

It’s really hard to believe that in 10 days, we will be out of our place in Langley and living full time in Vancouver. This couch that I’m sitting on right now will be in storage. It’s challenging to move this way. To be honest, Chantal is an expert on packing, while I’m the master of grunt work. To do so without the other there is difficult and discouraging - this whole situation is beyond difficult to endure, especially when our world now revolves around trade off's. Sometimes, I wish we could stay. The landlords have been so accommodating and concerned with our well being. Chantal was right when she said to me though, this place will bring memories of when Keian was sick. I agree with her, though it did feel like a home. The next place we find, we will not compromise. We will not settle. We will find our children the home that they deserve. Until then our home is BC Children’s Hospital, our extended family will be the Doctors, nurses and others who help us during Keian’s Journey. We have a roof over our heads, clothes on our backs and food on our plates. Yes, sometimes it’s hospital food, but that’s besides the point. If Keian can fight this hard, then we can fight to make wherever we are home.

Ryan - Daddy to the best little boys ever.

13 February 2013

Twinkle, Twinkle little star...

Today has been eventful to say the least. Keian woke up at 1 am shivering, but wasn't showing evidence of fever at that time. Our day nurse came to check on Keian at 8 am, while he was still sleeping and noticed he was breathing fast. After taking his temperature, it read at 39 again.

We also got the results back from his cultures yesterday and he tested positive for a bacterial infection - klebsiella pneumonae, which is a serious infection of the blood. Unfortunately, this was the exact strain we were worried about. The positive thing is that they caught it early - they told us that had we not been in hospital, things would be much more serious at the moment.

Nurses and Doctors have been shuffling through here all day wearing yellow gowns, gloves and masks. I am certainly not complaining...I couldn't ask for better care. I know the Doctors are working hard to help Keian with this fight. They tell us it's very unlikely Keian will turn to septic shock, as they got the antibiotics into his blood stream quickly, but the next 3 days are the most critical. He's been without fever for the day, but spiked again at 8 pm. The plan is to take cultures everyday over the next 3 days in the hopes that they will not grow.

His counts still haven't recovered and he required the additional platelet transfusion today as they didn't feel he was stable enough to wait until tomorrow. Lucky number 16 transfusion?

Tomorrow is Valentine's Day and although Keian will not be able to join in the parties that are happening upstairs, I know he'll have a good day! We'll make sure of that! He's requesting a turkey dinner tomorrow...a turkey in a little kitchen in an Oncology ward? Ha. I'll opt for a whole chicken, mashed potatoes and veggies...I don't think he'll realize it's a chicken, it's just a baby turkey, right?

He was asking for a snack before bed, but was having pain when swallowing the food. We've been told this is mucositis, which can get incredibly painful.

My little love he is. He asked me to rub his back tonight, so I sat on the edge of his bed while he talked to me about how much he loved it when I did that because my hands were so warm. It's something I've done since he was a little baby and it warms my heart just as much now, as the first time I held him in my arms. You'll always be my little sweetheart<3

"Never lose hope - when the sun goes down, the stars come out"

12 February 2013

Cancer sucks

This morning, Keian woke up with a fever of 39. When I talked to Ryan, Keian was curled up in a ball shivering - worst feeling ever when I couldn't be there at that moment with him. With his blood counts as low as they are, he is unable to fight off infections. They drew blood and sent it to the lab, but we will need to wait 2 days before we find out the type of infection it is - in the meantime, he has been started on 2 strong IV antibiotics to do the fighting for him. He was complaining of a slight sore throat this morning, so we're hopeful that it is just a touch of a viral infection...the lesser of the evils.

He was much better by the time I got to the hospital - he requested I bring stuff to make tacos for dinner. I was quite impressed he was interested in food, as he is on full NG feeds. About 2 tbsp of ground beef and cheese and he was full.

He also required another platelet transfusion - they aren't lasting for more than a day. The port site for his GCSF was also looking a little red and inflamed tonight, so the nurse removed it and they will place another tomorrow night before his shot needs to be given - definitely an awkward position, as he cries nearly every time now. When he had the GCSF last month, all we needed to do was tap on the skin above and he was golden.

I follow an amazing cake decorator on facebook by the name of The Sweet Flour - she had a post for someone to win a free giant valentines day cupcake and I was chosen! I'm so excited to give it to my boy on Thursday, I just know he's going to love it!

He's quite flushed, but yet his fever is down to 37.3, thanks to tylenol.

I look like something I call "Hospital Mom"...not all of us take on this wonderful hue, but I'm one of the lucky ones. My skin is horrible, my hair is littered with grey and I need a cut - oh what I wouldn't give to be getting my hair and makeup done right now!

"You never know how strong you are until you have to be"

10 February 2013

he·ro/ˈhi(ə)rō/ Noun: A person, typically a man, who is admired for courage or noble qualities

We didn't get the best sleep last night. At 3 am, the nurse came to do K's bloodwork, after which he told me he had to throw up. It's always hard to settle after that, especially because his NG tube always needs to be tested after vomiting to make sure it hasn't moved into the lungs from the stomach. It appears as though tonight may be taking on the same fate - he sat up in bed and barely made it in the bathroom before I flew to the door with a bowl. Ondansetron, teeth brushed, water and then back to bed. He's been doing so much better with the sickness than I expected during this phase. So far this week, only a handful of times.

He wasn't in the best of moods today. Everything seemed to bother him - he was grouchy and out of sorts. He very well may have not been feeling well and that was the way he portrayed it instead of verbalizing it.

His platelets are plumetting nearly daily and today he required another transfusion, just as he did on Thursday. Before being thrust into the world of cancer, I was oblivious to exactly what goes on within the walls. Keian has required numerous transfusions since he was diagnosed only 7 months ago - it is one of the very things supporting his body to make it through the side effects of this chemo, it really makes you realize how important it is to give.

Daddy and Joren came for a visit today - tonight will be my last sleepover before Ryan stays tomorrow. Joren is starting to get more and more out of sorts when at the hospital. He loves seeing his big brother, but it's becoming increasingly difficult to entertain an 8 month old wanting to learn and grow in a small hospital room. We've decided it would be best to keep him home most of the day and then when Ryan and I switch off daily, we will stay together as a family for a short time and then head back home so that Joren can explore.

It's hard being at home alone. Knowing that it will be months before I can even sleep beside Ryan honestly makes me sad. He's always been such a huge comfort for me and he has brought out the best of my strength - it's difficult being away from that.

My hero does not don a cape. My hero cannot fly, nor can he stop a speeding bus with his bare hands. My hero withstands the bad days, but smiles like they're good. My hero laughs through the pain and he rarely complains. My hero gets poked, prodded and pumped with poison. My hero fights the villain until breathless and then goes back for more. My hero is not a man, but a little boy that has more strength and determination than anyone I will ever know. My hero is my boy. My hero, my Keian<3

9 February 2013

Off to a strong start...

We were able to spend 5 days at home, as we were given a multiple day pass - those days went way too quickly. Tuesday snuck right up and we were packing for a much longer stay than we've been accustomed to. Our truck was literally packed to the top with those 'necessities' - ok, maybe not what some would consider necessities, but things that are definitely essential for Keian! Posters of superheroes, his Team Keian Kaptain Lasers T-Shirt to hang over his bed, some familiar blankets and stuffies, a ton of craft stuff to keep him busy on these long days and the Wii u. Oh, and I even get to stare at an angry red Ninjago alarm clock:).

Tuesday started the first of the 4 High Dose ARaC chemo administered over 2 days (just like last week). The difference compared to last week is that his counts have now crashed - in fact, the lowest yet. This is defininitely what they knew would happen, so now it's a waiting game and we hope that his body spares him of infection. We need A LOT of thoughts and prayers for this, as with no WBC's, his body cannot fight. He was placed in protective isolation on Wednesday and will remain like that until his counts rise, which will be atleast 3 weeks.

We are so thankful that we got an average sized room - the problem with hoping for a large on is that when they are busy, they have no choice but to double up. I don't know how another family could deal with my 3 boys' craziness...ok, maybe I'm a tiny bit crazy myself. He's so used to being confined to his room, that when the nurse called him across the hall to take his weight, he came to the door and peeked out like he was looking at surroundings that made him uneasy. The Doctors are quite surprised at his energy levels - usually when receiving this chemo and counts being as low as they are with Keian, kids are lethargic and tired. Not Keian, atleast not yet anyways. He's bouncing around and off the walls! Ryan had to stay 2 nights in a row this week, as I felt sick and had to stay away, but the first night I did stay, the Nurse told me how nice it was to hear laughter coming from our room.

We have been getting worried about how Keian has been when we're in clinic or admitted. He has been very withdrawn and phasing out his care givers when they are trying to communicate. I think he's so busy being the brave boy that we've seen him be, that he sometimes forgets that it's ok to be scared - we'll always be there for when he's scared, uncertain, sad or happy...might cover it all better to just say we will ALWAYS be here for him no matter what!ut. This week though, I am extremely happy to say he has done a complete turn around - that's not to say there won't be anymore of those days ahead, but it means that all of his care givers can finally see the goofy, fun-loving, loud and proud boy that we see almost everyday! He is now on full feeds with the NG tube - he's trying, but he hasn't been able to eat even just one bite of anything over the last 3-4 days. We get him things he asks for, but when it gets placed in front of him, he gags or says he just can't eat it. His taste has changed so much from the chemo - even drinking chocolate milk, he says is too 'sour' tasting. All these foods that he once loved, taste horrible for him. Despite the fact that he is on full feeds, he is feeling great! He has been sick only one morning a handful of times and he is now completely off the ondans for his nausea. They reinserted the port for his GCSF again to stimulate his cells to regenerate...day 2 and about 20 more to go! So really, aside from the usual stress of being a 'cancer family' and everything that comes along with it, the last couple days have been pretty low key at the hospital and low key is exactly what we want it to remain.

Keian loves playing mailman - he wants to take the key and pick up the mail everytime we mention it. He also LOVES receiving mail of his own. While he is set up in the hotel of health (sounds much better than hospital in my mind), he is able to receive mail! Cards or notes of encouragement or even just a little hi or a picture would we wonderful! I'd love to create a wall of hope.

If you'd like to send something to him, you can send to:

BC Children's Hospital Oncology 2B - Keian Blundell 4480 Oak Street Vancouver BC V6H 3N1

"When life gives you 100 reasons to cry, show life that you have 1000 reasons to smile"

1 February 2013

Home is where the heart is...

I really don't know how the nurses do it day by day. As there was talk about letting us go home for multiple day passes through the weekend, we knew we'd be set up with all the teaching required, so that it was safe to go home. We learned about Keian's CVC - how to hep-lock, change caps, emergency training etc. Changing the caps made me incredibly nervous - If the CVC line is not clamped during this properly, he could bleed out. Since he now has the NG tube and basically isn't eating or drinking more than a bird (literally), we also had to be trained on how to keep up with the cleaning and administering of feeds. I was so nervous on Thursday night once we got home, but after 24 hours, I definitely feel more confident. Ryan had an idea for a makeshift IV pole, and I have to say, it worked pretty damn well for the overnight feed. Armed with a full box of pediasure, syringes, sterile water and a tube - my little boy gets his nutrition. It's a very weird feeling. Today, Ryan was feeding Joren his bottle in the living room and I was in the kitchen "feeding" Keian - we had a bit of a laugh!

It's been 4 days since his surgery and he's doing so much better. I asked him today if his feeding tube was bothering him and he said "not at all". He doesn't seem to be favouring his neck as much and he can finally look down at his CVC site - for the first couple days; he would nearly cry looking down at his chest. It's quite a change, but he's happy that he won't have to get "poked" anymore.

His mood flips from one extreme to the other pretty quickly. Today, he was doing his best to dance around to a little song he was singing and a few minutes later he was yelling at us for no reason. He puts on such a brave face almost all of the time and we know how truly traumatizing this all is for him to go through. He amazes me every second with this strength and how he lives each minute without dwelling on his sickness. He is very angry and he has every right to be. It's hard for him to figure out how to deal with the emotions and to even understand why he has these feelings. He's only 5 and he's missed out on so much already in just these past few months.

"Courage is resistance to fear, mastery of fear - not absence of fear"