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"

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"

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

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"

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"

Counting down...

I always find that when we really need to be up early, that we can never sleep. Monday morning we had to be up at 3:45 a.m. to get to the hospital for Keian's surgery - I think I got a total of an hour sleep that night. As we were walking to the truck that morning, Keian turned to Ryan and said; "Daddy, do you wish you could take my pain away?". That's it, I was done. I cried nearly half way to the hospital.

I assumed I'd be a little more comfortable with the idea of my boy having surgery after everything he's been through since July, but it was just as emotional as the first time I watched him walk through the operating room doors. After 2 hours, our boy awoke - quiet, but doing well! Because he will be getting his bone marrow transplant, it was necessary to remove his VAD and put in a central line, in order to be able to give him the numerous mediations simultaneously. I was a little taken back to see a line coming directly out of his skin (with the VAD, when he wasn't accessed, all you saw on his chest was the bump where it sat under the skin. Shortly after he left the recovery room and was transfered to post anaestesia he was nearly screaming in pain. He had 3 seperate incisions, but because of all the manoevering done inside to remove and place, he was immensely sore - sore enough that he asked for something to take the pain away. He never asks for anything, so this is when you really know something is taking over. They also placed the NG tube, so that they could start the feeds - he hasn't been eating atall, so it's necessary so he can get some sort of nutritional intake.

He was allowed to go home that night before coming in Tuesday to be admitted - Daddy slept in Keian's bed and Keian slept with me in ours. When I woke up that morning, he was in the exact same position that he fell asleep in. It was another long day Tuesday, as we sat in the clinic from 10:30-5:30 before we were finally admitted upstairs. We were brought into 3B into room 6 - one of the smallest rooms on the ward! Only for a couple days they said. A couple days? Yes! They will be sending us home tomorrow, and we will be allowed to be home for the long weekend and return to the hospital for the remaining month on Tuesday.

For anyone that truly knows Keian, they know that he's a big goofball. He's crazy, loud, sometimes annoying (haha), a little bit nuts and my bestest boy! This is how you'd usually see him, but it seems that when we're in the hospital, he's very withdrawn. He rarely responds to the nurses and doctors. The nurse had mentioned that many kids withdraw as they're internalizing the trauma. I wish he would scream at me or talk to me about how he's feeling, but I think right now at his age, it's hard for him to verbalize everything that he's going through and how it all makes him feel. I don't think he even understands what he feels. Today, he's been goofy again...even calling his nurse crazy. "You're crazy, but all the good nurses are crazy". It's a little overwhelming having to learn how to take care of all these new lines. Tonight I had to flush and re-line his feeding pump. We also learned how to do dressing changes, clean and replace caps on his central line and emergency care. All a little scary.

So, tonight we'll try get the best sleep possible and return home to get refreshed!

"Turn your face to the sun and the shadows fall behind you"

Even the smallest star shines in darkness...

There’s been so much information to absorb this last couple of weeks. Who am I kidding; there’s been a lot to absorb since that morning on July 10th, last year.

Last week we had a visit from a very special couple that have devoted their time, effort and resources to start a pretty amazing foundation. It is to honour their little angel baby, Gaby, who lost her life to cancer, when she was only 7. Initially, when I read her story, I was weeping. Weeping for her, weeping for her family and weeping for all of the suffering she endured during her short life. I smile knowing that her legacy lives on in the work that her parents so lovingly do to give her the wish she asked for. She wanted to help other familes that are affected with childhood cancer. If you would like to donate to a wonderful cause, that will directly impact families that have a child battling cancer, please go to their site at Gaby Davis Foundation . They have helped numerous families, including ours.

When we were at the clinic last Friday, we spoke with the Dietician about Keian’s appetite, or lack there of. We can’t force him to eat, but I feel horrible when he doesn’t eat due to feeling nauseated from the chemo. Our major concern is obviously his lack of nutrition, which will help him to build strength for the battle he fights every minute of every day. It was recommended that we give Ondansetron, in conjunction with Gravol, regularly – until now, we have only been giving him the Ondansetron when he has complained of nausea. It has helped a little. I can't say it's helped as much as I had hoped, but it did put his nausea at bay long enough that he asked for us to take him to the Old Country Buffet in Bellingham. He's never been to a buffet and he was very fond of the idea where you have hundreds of items available to choose from. He found a love in the ham and went back for thirds! You heard me...thirds!

I’ve been craving a Mommy and Me photo shoot with my boy, and with his transplant coming up, it was more important than ever. I called upon my beautiful friend to come over on Monday night to engrain these moments forever. I am so in love with my little boy – I wake up with a smile EVERY day, because of him!

After the weekend, I expected to walk in on Tuesday morning and have them tell us that he’d be getting the NG tube inserted. It was decided, to help with Keian's anxiety that they would place it during his surgery to insert his central line. I've been talking to him about it quite often to get him use to the idea - there's quite a few little ones at the clinic that have them, so I am making sure he's familiar. I tell him he will be drinking formula, just like his baby brother, but that he doesn't even need to drink it through a bottle. He kind of gets a kick out of at these little familiarities. Tuesday was a scheduled day in clinic for an LP and triple intrathecal chemo. He’s been on the GCSF since he was discharged from his last hospital stay – they expected that he would need to be on it for a total of 3 rounds (each round is 5 days, as the port to accept the medicine into his subcutaneous tissue can only stay in for 5 days at a time). Well, we got great news on Tuesday – the GCSF worked much quicker than they expected, which meant we were a week ahead of time for the remaining treatment to begin. Sometimes it’s a weird feeling when you feel yourself getting excited when treatment can finally commence, but on the other hand, every day that it’s delayed due to low blood counts or neutropenia, I panic that the Leukemia will creep back in. It’s all enough to make you want to scream – having treatment, not having treatment… (I have to admit on more than one occasion I have been driving by myself and have made the loudest sounds that my breath can muster. “I wanna scream and shout and let it all out!!”

This week has been packed…something that has made Keian smile every day! For those of you that have helped put those smiles back where they belong, thank you!<3 Those classic Keian smiles adorned with those squinty little eyes.

Wednesday afternoon, a huge box was delivered addressed to “Team Keian”. Some very special ladies that have been a huge support, in so many ways, sent along a HUGE tote packed with pretty much every craft supply you could ever think of! This is going to take some of those boring moments of being stuck in a hospital bed and turn them into fun and fabulous works of art!

Today, Keian’s Grandma and Grandpa planned a special day at the Aquarium and then out for fish n’ chips – a little ironic? Ha. When they dropped him off, he couldn’t stop talking about everything that he saw. Even when I was tucking him into bed, he was still intently telling me how a sting ray releases their poison and what the seal was doing with the ball on his belly. I don’t think it’s any surprise that he had a great day!....Oh but wait, the day is not over! I got a message from another very special lady that told me that she, along with even more special ladies, will be making us some meals for us while at the hospital. Absolutely amazing! That's one of the things I'm finding the hardest is planning and making meals - it seems we are always out at appointments and then we're always so tired and it's late, so we just eat whatever. After a long day, Keian still managed to have some energy to play Toy Story 3 on the Wii - thank you to yet another wonderful Mommy and special little boy that wanted to bring some joy into Keian's day.

Tomorrow, we’ll be back in the clinic bright and early for a kidney function test. The next block of chemo, being high dose, is very hard on the kidneys and they need to make sure they are functioning correctly before administering anything. He’ll be well hydrated with ‘Mr. Water’ and will undergo 3 separate CT scans throughout the day to determine the effectiveness of his kidneys. After the day at the hospital, we’ll be on our way to Gramps’ house for dinner and a visit.

Monday it becomes alot more real and brings us into the moment - coming to the realization that in under 6 weeks, our baby boy will save my big boys life! He will be going in for surgery to remove his VAD and replace it with a CVC (central line) - this will allow him to receive the medications required for support throughout transplant and recovery. They will also be inserting the NG tube, which I’m hoping will take some pressure off of him to eat when his body really doesn't want to, but also help him to gain strength to continue his fight. Joren will spend the day with his Grandparents, so that Ryan and I can devote 100% of our energy towards Keian after he is brought into recovery. We’ll be able to come home that night to sleep in our own beds, but we’ll be packed up and ready for admission the following day. This will be the first of 2 long admissions – this time being approximately 35 days. The longest Keian has been in the hospital is 2 weeks, which was when he was initially diagnosed. It’s going to be a long, hard road, but this road is well worth travelling, as it will make our boy healthy and he will come out on the other end flashing those beautiful bright smiles, from a healthy body! We were given booklets to research on Bone Marrow Transplant – I say research, as I find it nearly impossible not to use Google and purely rely on the words written in the text in front of me. I’m sure many families that have gone through this protocol, could say the very same thing. We will spend the weekend going over them and show up to the family meeting on Tuesday armed with the million questions that they are so used to hearing. I would rather know every little thing, so that I can be prepared, rather than be unprepared, wishing I would have known.

"Hope is a wonderful thing, something to be cherished and nurtured, and something that will refresh us in return. And it can be found in each of us, and it can bring light into the darkest of places"