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June 20th

Sam slept well last night and woke up a bit crabby but no fever. We had plans to go to the zoo (and to ride the steam train there because Sam is obsessed with steam engines right now) so we decided to still go. He was good for a couple hours but wanted to be carried the whole time and became increasing tired. He ended up sleeping most of the trip and as the day went on developed a fever. I kinda was expecting this just because it has happened everytime his counts drop after chemo. He will be in for a few days on an antibiotic until his blood results come back ruling out any infection. We meet with Dr. Doyle tomorrow to go over the stem cell transplant coming up in a couple weeks. We will be in the hospital for 5-8 weeks depending on how things go. I'm thankful we got a bit of a break the last month with Sam feeling a lot better. Hard to see him feeling so unwell now again.

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Counts are low. Poor guy is having ongoing issues with anal fissures. Normally wouldnt cause anything but a sting but with no immune system these have been causing him a ton of pain when he poops and I think the beginning of a fever. Our days are always filled with residual effects but I count those days as great because he can still function mostly as a 3 year old would. But it gets harder and harder seeing him suffer and get used it it. #neuroblastomaresearch #therewillbeacure #childhoodcancerawareness

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I've been horrible at keeping this up to date! I wrote a long post a while back but it didnt save and failed to upload! So annoying! A quick summary of April & May is that we were constantly in the hospital for some reason or another...so far this had been our lowest point. Sam had another round of the high dose chemo and got another infection. It tested as a "surprisingly resistant" ecoli infection. Infectious disease was involved in trying to figure out where it was coming from. There is some disagreement between our team on whether this was an ongoing site that never really went away with a simple 7 day antibiotic or just a bad UTI. In any case Sam had to stay in hospital for 10 days on a strong antibiotic and had many tests to rule out the cause of the infection/if there was anything still there. This was all on top of him already not recovering from the past rounds and viruses. We were overwhelmingly worried about him because of his weight loss and fragile state. Very scary to go through this especially when his blood counts were staying so low. Any white blood cells he would get were just used up instantly in his body trying to fight off infection. In this we also had round 5 of chemo. It's kinda just a really hard blur now. Then finally we started to catch a break! We had been living at my moms since this all had happened because Garth had just bought a new truck and was busy with getting this up and running and between both kids and appointments it was crazy! We also decided to finish our basement before we came back home. Just to have the house running as smoothly as it could. With the major reno stuff done and Sam feeling pretty good I knew it was time to get back home and get our own routine back. My mom is still helping us all the time with hospital stays etc but it has been so great to get back to our life at home too. Sam's was given a longer than normal time to recover as well because his blood counts hadnt risen to where they felt ok to go through round 6. We've been enjoying this time so much! It's not exactly "normal" and we do have little on going issues but all in all Sam has been able to be outside and acting like a pretty normal 3 year old. Hes put some weight back on and is as active as he's always been before. We just had to go in for his last round of chemo before the stem cell tranplant. I was dreading it because of how well he was doing but he handled going back to the hospital like a champ and has been doing amazing! We will be meeting with his doctor to discuss the details of his stem cell transplant soon. This will be by far our biggest hurdle because they give such a strong dose of chemo you would not ever recover from without the stem cells and we will in hospital for at least 5 weeks. With each strong round of chemo we also have to monitor Sam's hearing (which some hearing loss is a very common) , also wrecking parts of the kidney and heart. Which his one kidney is only working at a very low end of acceptable and well he has heart issues already. It goes to show how serious Neuroblastoma is. I have a Facebook page I follow and kids are dying constantly. Leukemia used to be as deadly but through research has such amazing odds now... Neuroblastoma is the 3rd most common cancer in children affecting mostly babies and toddlers. Even though this is actually a common cancer in children the fact that it is a childhood cancer gives it less research funds..because childhood cancer is relatively rare compared to adults. I know there is a cure or better treatment out there but unfortunately we dont have that yet! If anyone is interested in donating I would gladly give some links :)

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June 14th

I've been horrible at keeping this up to date! I wrote a long post a while back but it didnt save and failed to upload! So annoying! A quick summary of April & May is that we were constantly in the hospital for some reason or another...so far this had been our lowest point. Sam had another round of the high dose chemo and got another infection. It tested as a "surprisingly resistant" ecoli infection. Infectious disease was involved in trying to figure out where it was coming from. There is some disagreement between our team on whether this was an ongoing site that never really went away with a simple 7 day antibiotic or just a bad UTI. In any case Sam had to stay in hospital for 10 days on a strong antibiotic and had many tests to rule out the cause of the infection/if there was anything still there. This was all on top of him already not recovering from the past rounds and viruses. We were overwhelmingly worried about him because of his weight loss and fragile state. Very scary to go through this especially when his blood counts were staying so low. Any white blood cells he would get were just used up instantly in his body trying to fight off infection. In this we also had round 5 of chemo. It's kinda just a really hard blur now. Then finally we started to catch a break! We had been living at my moms since this all had happened because Garth had just bought a new truck and was busy with getting this up and running and between both kids and appointments it was crazy! We also decided to finish our basement before we came back home. Just to have the house running as smoothly as it could. With the major reno stuff done and Sam feeling pretty good I knew it was time to get back home and get our own routine back. My mom is still helping us all the time with hospital stays etc but it has been so great to get back to our life at home too. Sam's was given a longer than normal time to recover as well because his blood counts hadnt risen to where they felt ok to go through round 6. We've been enjoying this time so much! It's not exactly "normal" and we do have little on going issues but all in all Sam has been able to be outside and acting like a pretty normal 3 year old. Hes put some weight back on and is as active as he's always been before. We just had to go in for his last round of chemo before the stem cell tranplant. I was dreading it because of how well he was doing but he handled going back to the hospital like a champ and has been doing amazing!

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Having some great days home!

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Wed April 25

Over the weekend not much changed for Sam and we were really worried about him and especially the fact he still wasnt really eating. We were so happy when Garth got him to eat a yogurt and half an avocado on Sunday. He seemed to have a lot of pain when he ate or drank but it was hard to get a straight answer from him because he will often say he is ok so he won't be bothered with anything. He also would drink slurpee....so we tried to water it down at least but at this point anything in him seemed good! We debated taking him back to the hospital a few times over the weekend but he had an appointment at cancer care monday morning and we figured we'd wait. At least let him get outside a little (even if was wrapped up in a blanket just with his eyes poking out). On Monday we found out he has thrush and his mouth & throat were all rashy (gums actually started bleeding that morning) Thrush isnt uncommon when you dont have an immune system. I had never even thought about that and was looking for red mouth sores when I checked him. Good to know now but the poor guy was in so much pain. It's comforting that we see the same small group of nurses a couple times a week and they have really gotten to know Sam. When we brought him in on Monday, so upset and frail, you could see such a genuine caring for him. He needed a platelet transfusion and while we waited for that, he received hydration. His blood chemistry was surprisingly good still though but he still only had a .2 white count. We got a prescription for the thrush and more GCSF needles and were ok to go home (strict rules to.watch for any fever). Sam has seemed to slightly improve since then and has been gradually eating more yogurt with the odd bite of something else. Today he actually has been eating the most yet but still very whimpery and always needs to be in someone's arms. We had a follow up appointment at cancer care this morning and on the way there he started having a few coughing fits. I was expecting a quick visit today because he has shown an improvement but his blood oxygen levels were low...between 87-91% so he had to go on oxygen again. His chest sounded ok but Dr. Doyle wanted an xray to check things out so we were off to emerg and being admitted to ck5 again. His lungs looked about the same as last week( upper lung conjestion). We just saw the doctors up on ck5 and they explained to me that as his white counts come up the body can finally start to produce mucus and such to help fight the virus so it's not uncommon to get a little worse during this time. So we will be in here for a night for sure.

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Friday April

This virus mixed with the low white counts has just been horrible on poor Sam. Wednesday night his blood oxygen which normally should be 100 was down to 90 when he was awake and as low as 80 when he was asleep so they put him on oxygen to help out. We doubted he was going to get released Thursday as we had planned but got off oxygen early Thursday morning and got the got ahead to come home as long as we would watch for a fever and bring him back if he got one. His temperature in the hospital was always just border line what  they consider a fever..38 C. He’s basically stayed at about that since we’ve been back at my moms but hasn’t improved in pain and energy level. He has been trying to eat but only takes one bite and cries. His cough really hurts and it seems his whole throat and mouth does as well. He just wants to be held constantly and is extremely sad and fussy. It’s hard to see him like this for so long and not be able to do anything.  We’ve been taking him out for walks in the double stroller to get some fresh air but even then he covers his head with a blanket a lot of the time. He’s just not himself at all and I’m praying those white blood cells start to come up and help him out!

I also want to thank everyone so much for the contributions to the go fund me page Krista Derksen set up for us! Krista you did such an amazing job of the site and the things you wrote in there were so kind and encouraging. We appreciate it tons! Garth and I were not sure we wanted a gofundme when someone had mentioned it before because a lot of our friends and family have helped us out so much already in all different forms but this has taken a load off of us...whether it be parking, sushi/pizza/chinese etc cravings, medications, a new fun toy, or just having a little extra money aside for the unknown. Thank you all so much! 

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All that came from just one injection and a bandaid sitting on it for a few days. I'm not using bandaids anymore unless needed because he doesnt let us take them off and I think they are trapping in germs staying on so long.

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Wednesday April 18

Grandma stayed the night with Sam again and he basically just wanted to be stuck to her...which is nothing knew. He's earned the nickname "Grandma's piece of tape" which he finds funny when he is feeling better. He's still not eating or drinking anything besides the odd popsicle but i think it's because his throat is so sore. He attempts to eat and then cries. I have noticed a little improvement in him today though. He was playing a game on our ipad and is now watching paw patrol. Yesterday he didnt want to do anything. His white blood count is still 0 but hemoglobin came up to 92 and due to a platelet transfusion yesterday it is up to 116 (was 8). We also think we know the cause of the fever Monday. One of the spots where he received his daily G-CSF injection started to get a little red a few days back. Normally nothing would come of it but because he has no white blood cells to fight any tiny infection it flared up significantly. The antibiotics they are giving him here will be helping and if all continues to go well we will be going home tomorrow on some antibiotics. The cough is still painful but it just has to run it's course unfortunely. With his white blood count 0 for a few days now it can only go up from here! So I'm hopeful we will finally be getting out and enjoying some of this nice weather soon! Thank you everyone for your well wishes.

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Few days of not eating....hoping his appetite comes back soon.

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Tuesday April 17

We are back in the hospital. Sunday Sam became super lethargic and still had his bad cough (so does Seth). We went to Cheryl & Owen's for Seth's birthday and brought Sam (carried him) hoping it would perk him up a bit. He did try a couple times to get up and play but mostly just napped and was super grouchy. His eating and drinking was minimal as well. I called Cancer Care Monday morning and they wanted us to bring him in because at this point in his cycle his counts are bottoming out and they suspected he needed a hemoglobin transfusion....which he did. My mom took him and I stayed with Seth since he is coughing and shouldn't be at cancer care spreading his germs. Part way through the transfusion Sam developed a fever so he had to be admitted to ck5 and start antibiotics (protocol when the white blood counts are low & his are 0 right now). We also learned that the nose swab he got last admission came back RSV positive which isnt good news. It's a bad respiratory virus. So they did an xray and we finally heard the results that he doesnt have pneumonia but some clouding at the top of his lungs. His symptoms havent really changed over the past few days. Still very grouchy, lethargic, not eating more than a bit here and there, and just feeling unwell. At least at the hospital they have him hooked up to fluids. The plan as of now is just to keep monitoring him and hope his mood, energy & appetite improve as his counts hopefully start to rise within the next few days. We are also waiting to rule out any infection in his blood which was sent off as soon as he was admitted (yesterday) and takes at least 2 days to come back. If all goes well we could be out Thursday.

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Friday April 13

Last Saturday we started the fourth round of chemo. Sam went in in pretty good spirits but by Sunday was pretty lethargic. The 3 types he had this round were Cyclophosphamide, Doxorubin, and Vincristine. He’s had Cyclophosphamide in the first 2 rounds but in a much lower dose spread out over 5 days. This cycle was 3 days long but over 5 times higher dose of Cyclo alone. We get a quick overview of each and a sheet on side effects and for the Doxorubin and Vincristine it causes a skin burn if it leaks under the skin so they make sure the central line is in properly in place. It’s hard to think that is being pumped in to him though! He’s also given 3 different drugs for nausea. 2 they can administer into his IV but one has to be given orally so that adds to the number of usual meds we give daily....i think it was 6 doses day we had to get him to take. I’ve complained of meds before but this is just such a huge part of our day! We’ve tried games, rewards, discipline, stories, pity...everything to make a dose easier on him but this is such a struggle! And it’s not like it’s just a 2 week dose of something he has to take....it’s been months and will be months still. He’s started hitting himself as soon as he sees a med poured, or crying that he needs to nap, or get away. It is so heartbreaking especially when I know he is feeling sick or even worse really when he’s finally just in a great mood playing & being a kid and I show up with something for him to take. A single dose of medicine can emotionally get worked up for a couple hours. Sometimes I finally get a med down and he starts throwing up...and at this point even the loss of any food or liquid we get down him is frustrating because he is so thin.  It’s just so painful to do day in and day out. I’m definitely realizing the effect this all is having on him and it’s not just in the sense of getting through something...this is his life for at LEAST about a year.  I used to worry about not doing enough sensory activities with him or did we go outside and play and now to picture his entire 3 year old self put into this treatment and what effect this will have physically and emotionally...I feel like I’m grieving a loss.  It’s been a hard week and I’m seeing a change in his personality even though he still has the best sense of humour in the right moment or best silly smile ever!

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DAY 2 of chemo....feeling not so great, snuggling with Grandma & the anti-nausea meds do work amazing and he hasn't thrown up. Seth's busy eating for the both of them.

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Today waiting to finally be ready to go home. Horrible pic of me but this managed to get a smile out of him ❤

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Since Sam had a cough and runny nose he had to had a nose swab (which goes pretty far up the nose & he HATES them)...the nurse brought his favourite blue popsicle as a peace offering. He still worried every time someone came they may need to do another one.

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Saturday when we arrived....super excited to order chinese food. Grandma making the room spotless :)