30 January 2013

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"

25 January 2013

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"

14 January 2013

There's no place like home

We’re home! And wow, does it ever feel good. Things are a little more back to “normal”, or at least the closest it can be. It only took cuddling and sleeping in his own bed one night before he awoke a different boy from what we’ve been seeing this last week in the hospital. It was really hard seeing how quiet and withdrawn he was during this recent stay - he would barely even acknowledge when someone talked to him. We managed to get into the patient kitchen on the ward to make dinner as a family only once, as most of the time the smells were uncontrollable on Keian’s tummy. Ryan and I had to take turns heading home to sleep in the evenings with Joren, but on Friday evening Grandma and Grandpa took Joren for the night so that we were able to spend some quality alone time with our special biggest boy. We attempted to change things up a bit this time by bringing in a lot of crafty things - we painted, put together puzzles, played games, read books and watched movies.

He seemed to tolerate the chemo he received daily pretty well, except for the appetite suppression, vomiting and nausea – whoa, when I say it like that, it doesn’t sound like he tolerated it very well, but really, compared to what could happen, they are the lesser of evils. The smells are one of the most major things, as they trigger bouts of nausea and vomiting – note to self: bring trays for EVERY walk we take, as sometimes it’s not always possible to make it back to his room. By Thursday he was off isolation – for the first 3 days of admission he was confined to his little room. But, I am happy to say that C-Diff remains no longer! It’s funny how he was begging to get out of the room and then as soon as he’s off isolation and we wanted to go for a walk, the first thing out of his mouth was “how long does the walk have to be?” We've been noticing quite a few changes with his hair lately. Not only has he almost completely lost it on the top of his head, but the parts that are still growing, much of it is blonde! Yes, blonde! His eyebrows have been lightening, as well. We've been told that after a long bout of chemo that these things have permanently changed on some patients in the past. You never know, Keian might end up looking like Luke Skywalker after all - Keian would be in his glory. Luke Skywalker may have to take some pointers from the best fighter I know!

Today, Keian tried to go up stairs. His legs are very weak and have lost a lot of muscle tone – he isn’t able to go up even one stair on his own, without his legs buckling under him and falling. Only a few short months ago, this is the same boy that ran around the kitchen island a million times. His appetite is now completely non existent. He has had one scoop of ice cream and one piece of turkey bacon for the entire day and wasn’t even able to keep that down. I’ve been giving him regular doses of Ondansetron and Gravol, but they do very minimal to help. He will require the NG feeding tube for transplant, but they’ll likely put it in much earlier as he’s already hit the level of concern for nutrition. The facial and torso swelling that’s been so imminent this last month or so is slowly dwindling down. I have to admit, I might just miss those chipmunk cheeks a little! Don’t get me wrong, I love taking care of my boy, but it’s a whole different type of taking care when he can’t do much on his own. We try to get him to do as much as he can on his own, but when he can’t go up stairs or get in the car, it’s so hard to watch.

The hospital called today and set a tentative OR date for his VAD removal and CVC insertion. His VAD in his chest is not able to accommodate the medications needed during transplant, so they are replacing it with a central venous catheter. This gets us one step closer to transplant, but also one step closer to me being scared out of my mind (as if I’m not already). There is so much that his little body needs to go through in anticipation of the transplant – Full body radiation, brain radiation, surgery to remove his VAD and insert the CVC, treatment to eradicate his entire immune system and intense chemo. He’s had wonderful nurses this last week – I ask A LOT of questions and when they take the time to explain everything I need to know, it really shows how devoted they are, not only to the kids, but to the parents. To think all of this happens in the next 6 weeks, as we gear up for a long haul – it’s slightly overwhelming. We will be staying either on site in the hospital trailer or at Ronald McDonald house for the duration of his stay and perhaps after, as he is required to be near by the hospital for the first 100 days following transplant.

Ryan and I have to give Keian daily injections of GCSF , which is to help stimulate his neutrophil recovery. This won’t keep his counts from going critical (they are already there), but they will keep them remaining critical for as long, which therefore keeps the window of increased risk of internal infection smaller. They inserted a port like IV catheter that stays in his thigh and we inject the solution everyday at home. Since it is only stable for 5 days, we will return to the hospital on Friday for treatment and replacement.

Over the past 6 months, we’ve learned what is truly important, we’ve learned to prioritize and not to waste our time. We’ve been reminded about the true beauty that is revealed by friends and family in times when you need them most. We’ve learned it’s ok to be overwhelmed and sad, but to learn how to turn that sadness into strength that allows us all to endure the next day. We’ve learned how someone so small can become our biggest inspiration and we’ve learned that you can never say I love you, and mean it with every inch of you, too many times.

"Look to this day, for it is life. For yesterday is already a dream and tomorrow is only a vision. But, today well lived makes every yesterday a dream of happiness and every tomorrow a vision of hope."

11 January 2013

Afternoon Delight

We've been in hospital now since Tuesday morning. Keian has been receiving daily chemo doses of Etopiside and Cyclophosphamide - when I hear those names, it makes me think of some sort of pesticide poison, and I guess really, it is. Both of these drugs are very hard on the bladder, so he's heavily hydrated with "Mr. Water".

He stopped his Dexamethasone last Friday and his appetite that we've grown so accustomed to eating the fridge clean, is gone. He's been vomiting and gagging quite often this week. His Kit Kat obsession has officially been thrown in the bucket - I made the mistake of bringing him one today from the grocery store and even looking at the package he gagged. We're going to try to play around with some Gravol on top of the Ondans to see if it makes any difference. He did pretty good tonight with his dinner request though - tacos...he even made them up himself! They have a kitchen on 2B for the families to use, but wow, do they ever need some things. I think they have a total of 3 plates and I was stuck using some towels to take stuff out of the oven.

The antibiotics are definately doing their job on his C-Diff and in conjunction with that, he's finally off isolation! So nice to actually be able to go for a walk with him - kind of funny though, as soon as he found out he could leave the room, he asks; "How long does the walk have to be?".

We've started our GCSF training - on Sunday, Keian will need to get a port put into his leg, and every day while we are home for the next couple weeks, we'll have to inject him with the drug that will help to shorten the cycle of low neutrophils. Unfortunately, it won't keep them from getting low, but atleast it will shorten the duration to which he will be suseptible to internal infections. We have also had our meeting with the Physiotherapist here at the hospital. Because of his peripheral neuropathy, he has very tight muscles and limited strength. They also noted that his trunk and hip muscles have decreased strength and mobility. They may consider putting orthotics on his feet while he sleeps in order to keep them pulled up. We've been doing our stretching exercises daily - Keian definately prefers the clam slap with his legs as he tries to catch our hands.

His hair is now pretty much gone. It's slowly been coming and going, but it's so thin on the front that it's pretty much non existant - especially if you compare how thick his hair was during the summer. Buuuut, it will grow back and be just as beautiful as it was! Something we have noticed though, is that his eyebrows and eyelashes are getting extremely light...nearly blonde. They tell us that every person that receives chemo is different - there are so many different treatment protocols and each chemo has many side effects, some that affect fast growing cells, which is why hair is one of the first to go. When his hair finally does grow back, it may even be a different colour or texture!

Earlier in the day yesterday, I noticed a Mom and Dad in the hall, noticeably distressed. Surprisingly, this isn't that usual to see, as I find that most families tend to stay clear of a lot of interaction with others. I was talking with Keian's nurse and she mentioned that the news those parents were told was not good. Their little boy, maybe a couple years older than Keian, was just diagnosed with terminal brain cancer with no hope of treatment. My heart immediately sank and I found myself thinking about this family for the entire day. When I was leaving last night, I saw the Mother sitting on the ground outside of the Oncology ward crying. She looked up and smiled as I walked through the doors - it was almost as if I could see exactly what she was feeling when I looked into her eyes. It's like an unspoken word and I truly understood how devastated she was feeling. I bent down and held her hand and stroked her hair. I cried the entire way home and couldn't stop thinking about what the future holds for their family. I pray for peace and precious memories with their boy.

Ryan and I have been having to take turns going home in the evenings with Joren, as he's not able to spend the night at the hospital. Joren is spending the night with his Grandparents tonight, so that Ryan, Keian and I can have a family sleepover...love that. And, what a perfect night for that to happen...while we were all sitting around giggling and horsing around, K's Oncologist came in with a big smile! We've been waiting for our results for the storage disorder test - back in November, Keian tested positive for the abnormal VLCFA storage disorder called Adrenal Leukodystrophy, but they were unsure if it was the chemo that damaged his liver or if he truly had ALD. I haven't talked too much about the ALD with anyone besides Ryan, as the outcome, if he was truly positive, was not favourable. Also, if Keian was, then Joren also had a chance he was, and therefore, they would be unable to harvest his bone marrow for Keian. I am beyond over the moon happy that her smile made our day...or our weekend for that matter! Keian and Joren were both negative for the disorder!! This means that the transplant can go ahead as planned! It feels like lately all we seem to be receiving is bad and unfavourable news and this felt so incredible to finally be able to truly smile!

"Wondrous is the strength of cheerfulness, and its power of endurance - the cheerful man will do more in the same time, will do it; better, will preserve it longer, than the sad or sullen" - sometimes this is one of the hardest things to do. Having said that, we will never take a minute for granted, we will have fun, show love and appreciation, make the best of our days and stay strong for our sweet boy<3

"Our greatest glory is not in never falling, but in rising up everytime we fall"

4 January 2013

Why do we fall? So we might learn to pick ourselves up.

Early Wednesday, Keian woke from sleeping calling for us. He immediately started vomiting and told us he needed to run to the bathroom. This continued until I decided that it was time to call the hospital. To make a very long day easily understood - Keian was admitted to the hospital for 2 reasons. He was positive for Clostridium Difficile, which is basically a bacteria that causes severe stomach pains, vomiting and diarrhea. While he was in the clinic, they drew blood and discovered that his liver enzymes were incredibly high - extremely high. Their major concerns with these results were that Leukemia may have relapsed in his bone marrow, or that his liver has been damaged by the chemo. The only thing worse than hearing our child has cancer is that the cancer has relapsed. This was an unplanned admission, so it was the one time we weren't prepared with our overnight bags. Keian asked for Daddy to stay, as one of us had to go home with Joren. I am angry...beyond angry. I drove home that night so angry and hurt that I had to pull over. I literally couldn't stop the tears. I've been asked if we've been praying for Keian and the first thought that comes to my mind is that we haven't been as much as we possibly should. The only way that I can describe the feeling is anger. I'm so angry that such a beautiful little boy is forced to undergo all of this on his little body. I'm angry that he's missing out being with his friends. I'm angry that he's sick and I'm not. I'm angry that he may never have the chance to be the Daddy I know he'd be, due to the chemo. There's no other way to explain this other than that. I've had a rough couple of days trying to put all of this information together. We're basically thrust all of this information and expected to package it neatly into a box and move on. "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."

The night went over with no problems - Keian was started to Flagyl for the C-Diff and continued his chemo as usual. Thursday morning, as I was getting ready to pick him up from the hospital, Ryan called to tell me that one of his test results came back from November. This was a test they ran due to the MRI results that showed cloudy areas in his brain. They were concerned that the changes may not only be from the Methotrexate toxicity, but perhaps from an existing lipid storage disorder. Keian's results came back abnormal, which means he is positive for the disorder. Not only does this bring on additional health concerns for him, but if it turns out that it is an inherited disorder, Joren may have the same results. If this is the case, they will be unable to use his marrow for Keian's transplant. Joren and I will be tested to determine the genetic line.

today, we were told that his treatment plan will change slightly due to nature of his Leukemia presentation and that they will now be treating him as the extremely high risk. This also means that he will get largest dose of the best drugs they have. While we await results from his bone marrow biopsy, which will likely be by Monday afternoon, we will also be admitted on Tuesday for 6 days. During these 6 days, Keian will receive chemo drugs that are known for damaging the kidneys and liver and therefore needs to be watched 24 hours a day. After these 6 days, he will be able to come home for 2 weeks. He will then be readmitted for 1 month, in order to receive high dose ARC (cytarabine) - this given at high doses, we're told has serious side effects, one of which is a 5% chance of mortality, due to uncontrolled infection. After this, he will start his brain and total body radiation to condition him for his transplant. This will completely strip him of his immune system with zero chance of recovery without rescue stem cells. We've been told that within 3 weeks, we will be admitted for a a minimum time of 3 months and will not be able to leave his room during this time.

It truly feels that our world is crashing in upon us. We've remained strong through all of our struggles and he has been the most incredible fighter - I couldn't have asked for more. We have been and will continue to remain positive and shine that positivity in our everyday life. Someone told me the other day that sometimes you have to fall, so you can pick yourself up and become strong again. This is truly what's happening. I look at him with such admiration, but yet at the same time, it breaks my heart. He is so tired and weak. I watched him tonight struggling to even get off the couch and he can no longer get off the floor by himself. The pain he's feeling in his legs, as well as the decreased strength due to the peripheral neuropathy has not only damaged his physical body, but also his spirit. But yet, throughout all of this, he still finds the good. Tonight, as I was rubbing his legs, I couldn't help but tear up. He looked at me and asked me why I was crying. I told him that I was crying because I wished he wasn't sick. He responded with; "I just keep taking my medicine" clapped his hands and said "then I'll be all better".

Tomorrow, we will wake to see a smiling little boy, who reminds us every second of every day what it truly means to be beautiful.

"You never know how strong you are, until being strong is the only choice you have"