Well, I think the only real way to describe the last two days is 'physically and emotionally draining'. Although, so far the good has far outweighed the bad days, the bad days are really hard to handle.
It started on sat night when I tried to leave and let daddy take over for his turn with Nevan. Nevan became very upset that I was leaving and started crying. I knew I had to go, so I kissed him good bye and left him in daddy's capable hands. I called Craig from the car to remind him about the meds that Nevan had to take that night and I heard Nevan crying in the background. It wasn't going well, and he was now refusing to take his meds. As a last ditch attempt, the nurses and Craig thought it might work if I came back to the hospital. This was the first time I was going to see Nylah in 2 days and didn't want to turn back, so I asked the nurses if he could have his meds later, drove to my parents place to see Nylah for an hour or so, home to let the dog out and take a shower and then back to McMaster.
In the mean time Craig was able to get Nevan happy and he was in good spirits when I arrived. It was already close to 10pm and Craig left right away so I could start the meds negotiation. It took about 30 min but Nevan took them. He made me try it first and holy Cow, it was disgusting! My drive to force him to take his meds went right down the tubes at that point.... I didn't blame him one bit!
Since Nevan had been so good at taking his meds and eating his meals as well as having very minimal side effects up until this point. The Drs decided to give him a day pass! Craig and I were very excited about this and we planned a picnic in the park and then a drive through the African lion safari. Unfortunately I think our expectations far outweighed what reality could have allowed. Nevan lasted about 20 minutes before needing a rest. He fell asleep on my lap and stayed asleep while we had a nice picnic. When it came time to take his meds, we tried our best, but he choked and spit them out. He was just wiped at this point and Nylah was miserable because she was sick and missed her nap. We cut the day short and everyone went home. While we were driving we made a last attempt to cheer Nevan up and asked if he wanted to see the animals at the safari, He said yes and then fell asleep again on the 15 min drive over there. We woke him shortly before entering the reserve and he seemed to perk up. We convinced him to come to the front seat and he enjoyed watching all the animals.
We drove him straight back to the hospital and got him hooked back up to his tubes... His spirits lifted immediately and we had some good times until it was time for meds again. This time it was a fight of all fights and he refused to take anything. Nurse Nicole decided it wasnt worth the fight and suggested having a feeding tube put in. Usually kids have feeding tubes in for nutritional purposes, but Nevan was eating fine. I didn't want to do this to him but he needs to take his meds. We had a long talk and I told him a bit about the tube, he broke down immediately and said "Mommy, I'm not a brave boy" at which point, I also broke down. I picked his bony little body up and sat him in my lap. On his IV pole hangs a string of beads that Maria gave him. They are Bravery Beads. Each bead represents a test, procedure, treatment or experience that he has had since he got sick... All requiring so much bravery and courage. I pulled the beads down and we went through them one by one.... I Reminded him what each one meant and how brave he was to have done all those things. He counted them.... 47 beads. He has been through 47 things in the 2 weeks he has been here. I think that may rival what I have been through in my whole life!
The decision to put a feeding tube in for a 4 year old is mostly at the discretion of the parents. This decision was very difficult. Up until this point everything that Nevan has to go through was essentially forced on us. Things he requires to get him better. This tube however was not w requirement, but more of an option to make things easier... But easier for who? Nevan already has two tubes connected to his arm, now there will be another one coming out of his nose and taped to his sweet face. Craig and I went back and forth, knowing that this next dreaded procedure would be because we asked them to do it... It would be because of us. We knew it would have to go in eventually, but we wanted to get him to his next sedation... Now that we are requesting it early, they will have to do it while he is awake and he is petrified! I was almost ready to ask his oncologist if we could just keep him in the hospital until his next sedation instead of sending him home, when he launched into a speech about how he would have done the same thing as us and by getting the tube now, he will get used to it and be able to go home and start having happier days. He reminded us of how much negotiating and fighting we are doing just to have him take his meds, he said all that time is wasted on negativity when we could just do a tube and keep positivity to a higher and constant level. One bad moment in exchange for many happier ones... Sold! I requested the tube be inserted this afternoon.
Cute story of the day:
Nevan "mommy, you know why I got sick?"
Me "why?"
Nevan "because Nylah made me sick"
Me: "no Nevan, it wasn't her fault. It wasn't your fault... Or mine or daddy's. It wasn't anything that you or Nylah did or didnt do. It wasn't anything that you caught from her, or us or your friends at school. It just happened all by itself. Sometimes these things happen and we are all working hard to make you better ok? Do you understand?"
Nevan just looked at me with a very thoughtful look, obviously processing what I had just said
Nevan: "mommy?"
Me: "yes Nevan..."
Nevan: ".....it's a little bit Nylah's fault"
In one ear, out the other... The trait of a Normal 4 year old. :)
Tuesday, July 31, 2012
Friday, July 27, 2012
Red pee (dad)
Tonights the first night I experience a full day of chemo. He fights with me to eat his dinner. I try every trick I know to get him to eat something. He's not easily fooled these days. He ate quit a bit of pancakes for lunch but needs to keep eating to help his recovery. He finally asks me to give him some of my water. We cant share water with him. We bring our own and he has his given at the hospital. He has one regular, one with a laxative powder and one with ice thawing. I pour the old one out and refill it with my water. He tastes and tells me he likes it better. I then talk him into taking a few sips of his calorie shake. I tell him to take a sip of it then the water to wash it down. He says he will but wants his water not mine for this. I laugh out loud and he just stares at me. Apparently his water compliments the chocolate meal replacement shake better than mine. Next task is to get him to do his mouth washes. These prevent sores in his mouth and throat. He takes the first with hesitation and a foul look on his face. This one he gets to swish and spit after 3 seconds. The next is not as easy a sell. Its in a syringe which is visually unappealing. A reminder of the many needles he's been poked with. It also taste like banana. In my experience anything they say taste like banana really taste like those banana sponge foam candies. Which I think tastes like crap. Nevan has never been much of a candy kid. Neither is Mom or I. And things that taste "like" other things tend to have a chemical taste too. Hence the fight to drink a chocolate calorie shake. Regardless he needs to take this to prevent the mouth sores. If he gets the sores he will be in even more discomfort. Which means he won't want to eat. Which means he will need to have a feeding tube put in through his nose down his throat. As if he hasn't had enough tubes for a life time. The doctor says most kids do it with less of a fight than one would expect. I have watched Nevan do things in the past 2 weeks that have completely surprised me. I have faith he can do anything. Except that. If we can get him through the next 2 weeks they can install it while he's asleep. Maybe we don't really know how hard things will be with the side effects, the mood swings, mouth sores. appetite. We will try our hardest not to have that tube put in. He needs to eat and take meds. Day 1 spits mouthwash out all over himself in a violent refusal. Today takes with a little whining but does it properly. He says "i'm not really sure about this" with the sadest face he has. Day 1 didnt want to eat dinner. Today ate almost as much spaghetti and meatballs as mommy! Such mixed feelings it gives me. We spend everyday making him do things he doesnt like. It sounds so cute the way he says that though. So mature for a little guy. Next discussion we have is to take his allopurinol pill. I crush and put on a spoon of apple sauce. He sees me do it. Makes me press the pieces down into the sauce so he cant see them. Smart kid. He takes without a fight. Ill bury everything I can in apple sauce I think. Now on to something fun like a movie and books.
The night goes as well as it can. He sleeps well but its interupted by rain, thunder, lightning, nurses putting meds into his IV, taking his vitals, bells in the halls for other patients, nurses talking at their station. He wakes with the sweats twice. I rotate his pillows and change his matress pad. He wakes once for a pee. He hasn't pee'd in the toilet since we got here. It comes quick and often because of the IV. I pull him off the bed and stand him. I hold the pot up to him and he holds my shoulder while he sleeps through it. I hear that familiar trickle stop. I think I was half asleep too. I pull the pot away and then he starts again. Its dark and I already had the pot placed back on the ground. Yup he pees on me. On the floor, the bed sheets, my hand. The next morning I joke with him about his radioactive red pee and how he hit me with it last night. Im supposed to wear gloves so I don't get splashes of it on me. I could care less considering what hes done. Besides Im off work now and too busy to get to the gym. A little steroid pee couldnt hurt.
Most of the chemicals in his body do their job then get peed out. Which makes me somewhat grateful. I sit there while he naps and watch the IV drips, the steroids, the chemo, the antibiotics. In 33 years I have never had that many chemicals running through my body. Since the day he was born I have been trying to protect him from the world around him. The way any father would. He always holds hands in parking lot. He has a highend car seat locked down in a monster of a minivan with airbags all over the inside. Hes never out of sight when outside. Not even in the backyard. Doesn't drink soft drinks (doesnt like anyway). I picked out the best daycare in the city. Even Nana a well loved school teacher agrees. I use tide free, bounce free, and wash his bed like 2-3 times a week. Okay I might have OCD. The list is bottomless. I always have his health and safety in mind. So I sit here and watch chemical after chemical, day after day being injected into his veins and mouth and I go numb. The one thing I couldnt protect him from I cant even see and the cure, sorry "protocol", is a bunch of clear fluids that look like water to me. Helpless is not a good enough word. And it's an unfair judgement because we are helping him in anyway we can. But it's hard to trust 30 plus people you don't know fix a problem you cant even see. He had a bad fever and now we are here.
The night goes as well as it can. He sleeps well but its interupted by rain, thunder, lightning, nurses putting meds into his IV, taking his vitals, bells in the halls for other patients, nurses talking at their station. He wakes with the sweats twice. I rotate his pillows and change his matress pad. He wakes once for a pee. He hasn't pee'd in the toilet since we got here. It comes quick and often because of the IV. I pull him off the bed and stand him. I hold the pot up to him and he holds my shoulder while he sleeps through it. I hear that familiar trickle stop. I think I was half asleep too. I pull the pot away and then he starts again. Its dark and I already had the pot placed back on the ground. Yup he pees on me. On the floor, the bed sheets, my hand. The next morning I joke with him about his radioactive red pee and how he hit me with it last night. Im supposed to wear gloves so I don't get splashes of it on me. I could care less considering what hes done. Besides Im off work now and too busy to get to the gym. A little steroid pee couldnt hurt.
Most of the chemicals in his body do their job then get peed out. Which makes me somewhat grateful. I sit there while he naps and watch the IV drips, the steroids, the chemo, the antibiotics. In 33 years I have never had that many chemicals running through my body. Since the day he was born I have been trying to protect him from the world around him. The way any father would. He always holds hands in parking lot. He has a highend car seat locked down in a monster of a minivan with airbags all over the inside. Hes never out of sight when outside. Not even in the backyard. Doesn't drink soft drinks (doesnt like anyway). I picked out the best daycare in the city. Even Nana a well loved school teacher agrees. I use tide free, bounce free, and wash his bed like 2-3 times a week. Okay I might have OCD. The list is bottomless. I always have his health and safety in mind. So I sit here and watch chemical after chemical, day after day being injected into his veins and mouth and I go numb. The one thing I couldnt protect him from I cant even see and the cure, sorry "protocol", is a bunch of clear fluids that look like water to me. Helpless is not a good enough word. And it's an unfair judgement because we are helping him in anyway we can. But it's hard to trust 30 plus people you don't know fix a problem you cant even see. He had a bad fever and now we are here.
What's your favorite colour?
Nevan is on his third day of intense Chemo and is doing far better than we expected him to! The doctors and nurses are very happy and a bit surprised that he is still eating and that he is now taking his meds no problem. I decided to switch Nevan to pills instead of liquid meds, hide them in a spoon full of apple sauce and he takes them with hardly any hesitation! We still get the usual "I'm not so sure about this!" but I think it is only to prompt the inevitable "Wow! You're so brave!" speech.
I stayed with Nevan for 2 days in a row and then switched off with Craig for one night and I am back here for another 2 nights. Craig is at home trying to prepare the house for Nevan's return home. There is a lot to do to prepare the house. Considering we had only moved in 1 month prior to Nevan getting sick, we were hardly even settled.
Nevan's first chemo treatment was done while he was sedated. The first time they administered it while he was awake shocked me to the core. In walked Nurse Nicole, dressed in full protective gear. Full gown, tucked into gloves with a cap and goggles. This is to protect her just incase the syringe in her hand splashes on her. She needs to take such lengths to protect herself from this medication, yet this is what they are going to be pumping through my 4yr olds 35lb body in high doses for 2 years?!?! It was a punch in the stomach and to stand there with a smile and watch them do it was all the strength I could muster. I left a few minutes later for the long drive home, with my mind wandering to very dark places. But as my brother said, we should look forward to seeing her, because every time we do, we can tick one more day of treatment off our calendar.
An evening with my Nylah cheered me right up however. Whether happy, tired, angry or playful, Nylah demands attention. On a typical day it is always demanded hardest when I am trying to cook dinner, take a shower or anything else that requires me not to have a toddler growing out of my hip. These days however, she is a very welcome (and adorable) distraction.
Nevan has been tolerating treatment very well. He hasnt shown any of the side effects that we have been warned of so far. No nausea, stomach pains etc. his appetite is pretty good, he is drinking well and he loves to go for walks. So all in all it has been a fairly uneventful couple of days and I would be quite happy if it stayed this way.
There actually was one very amazing, very cute thing that happened this evening. Nevan made a friend! Another 4 year old boy moved into the room next door having been diagnosed with the same thing only a few short days ago! They met in the hallway pushing their poles and wearing their Mickey Mouse Masks. In addition to their strange new medical attire, they both shared matching Cars Slippers and a love for spiderman. They were quite impressed with each other and after a brief and super cute conversation about their favorite colours and how drs make them cry, we all settled in the room down the hall to play with some transformers and to colour in some spiderman books. I chatted with his mom for a while, listening to her sadly familiar story and then we went back to our room. Nevan sat in his chair with a big smile, high on life again like a 4 year old should be! As we are brushing his teeth and turning out the light, Nevan tells me he has a new best friend... Yes, I think we will be visiting room 16 quite often!
Cute story of the day:
Nylah singing 'Itsy Bitsy Spider"
"ipsy pider.... Up the wash out!... Out the suuuuuunnnnn.... Rain..... Again! Yay!"
Best version I've ever heard!
Wednesday, July 25, 2012
Dr's are amazing but sometimes Mommy knows best...
It's morning and we had a beautiful sleep. 7:30am and Nevan is still sleeping. He has meds at 8:00am, but I may let him sleep until 8:30am....he's got a big day ahead of him. Today Nevan will get a very high dose of treatment to kick off the Induction phase of his treatment.
Nevan's Treatment of just over 2 years looks like this:
Prophase: 3 days (completed)
Induction phase: 4weeks
Consolidation phase 1: 3 weeks
CNS Therapy: 3 weeks
Consolidation Phase 2: 27 weeks
Continuation/Maintenance phase: 24 months
We met with the Pharmacist, Dr Jones yesterday to go over exactly what happens during those phases and we discussed the side effect of each specific drug. There are many... 7 treatment medications and countless antidotes and maintenance meds to help counteract the symptoms of the treatment drugs; each with side effects of their own. I won't go into the details of the side effects as you can imagine, the list is very long. Although they have to list them all so we are well informed, every child is different and Nevan won't experience all of them. We will deal with the ones that come and hope that they are the better of the bunch!
The one worrisome thing is catching them as they come and changing his lifestyle and environment to lower the risk of infection. The slightest little fever will have us back in the emerg and even if a child within Nevan or Nylah's school has the chicken pox or some other childhood virus, Nevan will have to be hospitalized and monitored. The chicken pox vaccine is ok, but only works if there is an immune system to help it out. I have been reading a lot and I think I can come up with a routine that will help us monitor Nevan from home. We can't "put him in a bubble and roll him around" as our social worker has said, but routines will help keep organized and keep everyone, including Nylah, on track.
I feel fairly confident that I will be able to spot any problems. Last week, Nevan was lying with me on my, oh so comfortable, 'chair-bed' and I felt that he was about to get a fever. I called in the nurse and she felt him and took his temp... All normal. She said not to worry and I asked her to come back and check in about 15 min. I called her back early and asked her to take it again, she took it under his tongue and it was fine.... But I was positive he wasn't fine. I called her back before she even reached the doorway and asked her to do it again. She smiled (obviously used to dealing with worried parents) and came back only to find that Nevan did indeed have a very low grade fever under his arm. Within a few minutes it spiked to 103, tyelenol had to be given and his blood taken and cultured ASAP. A few days later, I was staring at Nevan... As I do most of my day, and I felt that his skin and his eyes were a bit yellow. I told the nurse and she said that he seemed normal to her. Later in the morning his Dr came in and I asked if he had his liver function tested recently because I thought Nevan's eyes looked a bit yellow. He took a look and said he looked fine but they will monitor. Later that night I waited for the night nurse to come on shift and asked if she would test his Bilirubin at this 6am blood work. She said "no problem!". The next morning I got a visit from his Dr once again who told me I was right, and that Nevan's Bilirubin was off. These Drs and nurses are amazing, but mommy's and daddy's know their kids best, that's for sure! It's a good thing they consider us a big part of Nevan's team and not just bystanders!
Maria, Nevan's child life worker spoke to us about Nevan losing his hair. This will start to happen about 10 days from now and by the end of the month it will be gone. It will grow back, however Nevan will likely not have hair until somewhere into his second year of treatment. We have changed our minds about shaving it (although daddy will still do this). Maria has reminded us that he will be seeing numerous kids his own age going through the same thing and often this is a similarity that they will find comforting. He will make many little friends during his 2 years at McMaster. It was so comforting to hear that Nevan will be part of a little social group of his own over these next two years as we were quite worried that keeping him isolated would make our already shy kid, even worse.
We called his teacher and spoke about options for school. She is completely on board with supporting us and Nevan with what ever he needs and he will not be held back unless it is at our request. As we monitor Nevan's blood counts daily, we will know when his immune system will be able to tolerate school and when he will just have to stay home. I will be volunteering in his school to help keep an eye on him and help the other kids understand why Nevan will be treated a bit differently than them. We will try and keep things as normal as possible for him without compromising his health. There is a good chance he will be able to attend about 30% of the next school year, which would be amazing for him!
We were also able to talk to Nevan's dietitian Laura. Diet and the way we handle and prepare food will have to change drastically. Frozen and canned vegetables are preferred over fresh. If fresh, everything that can be peeled should be (cucumber, carrots, tomatoes, potatoes etc) and then cooked thoroughly. Absolutely no raw vegetables including lettuce on his sandwiches or salads of any kind. All fruit with a skin must be intact, any fruit that has a puncture he cannot have. Any berry with a step, must have the top half of the berry cut off and Nevan can be served the bottom half. Pre-packaged, pre-processed foods are good... fresh or foods from restaurants... not so good. Food needs to be cooked more frequently, which means more frequent trips to the grocery store. Daily exercise and physiotherapy will help prevent Nevan's muscles and bones to atrophy from the steroids. Phew!! The good news is that our entire family will now be 10x healthier than we ever were and I may finally be able to lose that last 10 lbs!
Cute Story of the Day:
Nevan`s Platelet's are very low and his PICC line is still bleeding. Now it has travelled outside the dressing and is dripping on him...
Nurse Nicole: "Nevan, I am going to put some gauze on your arm so that the blood doesn`t keep dripping on you"
Nevan: "well, be careful please, I`ll show you how to do it"
Nicole (Smiling): "ok Nevan, that would be great!"
Nevan: "you just need to be very slow and not use that much tape.... oh that`s perfect!"
Nicole (Giggling now): "Ok, and what about this part?"
Nevan: "just go slow... you can do it... the other side now... ok, that`s more like it! Good Job!"
Nicole (almost in hysterics): "Thanks for helping me through that Nevan!"
Nevan's Treatment of just over 2 years looks like this:
Prophase: 3 days (completed)
Induction phase: 4weeks
Consolidation phase 1: 3 weeks
CNS Therapy: 3 weeks
Consolidation Phase 2: 27 weeks
Continuation/Maintenance phase: 24 months
We met with the Pharmacist, Dr Jones yesterday to go over exactly what happens during those phases and we discussed the side effect of each specific drug. There are many... 7 treatment medications and countless antidotes and maintenance meds to help counteract the symptoms of the treatment drugs; each with side effects of their own. I won't go into the details of the side effects as you can imagine, the list is very long. Although they have to list them all so we are well informed, every child is different and Nevan won't experience all of them. We will deal with the ones that come and hope that they are the better of the bunch!
The one worrisome thing is catching them as they come and changing his lifestyle and environment to lower the risk of infection. The slightest little fever will have us back in the emerg and even if a child within Nevan or Nylah's school has the chicken pox or some other childhood virus, Nevan will have to be hospitalized and monitored. The chicken pox vaccine is ok, but only works if there is an immune system to help it out. I have been reading a lot and I think I can come up with a routine that will help us monitor Nevan from home. We can't "put him in a bubble and roll him around" as our social worker has said, but routines will help keep organized and keep everyone, including Nylah, on track.
I feel fairly confident that I will be able to spot any problems. Last week, Nevan was lying with me on my, oh so comfortable, 'chair-bed' and I felt that he was about to get a fever. I called in the nurse and she felt him and took his temp... All normal. She said not to worry and I asked her to come back and check in about 15 min. I called her back early and asked her to take it again, she took it under his tongue and it was fine.... But I was positive he wasn't fine. I called her back before she even reached the doorway and asked her to do it again. She smiled (obviously used to dealing with worried parents) and came back only to find that Nevan did indeed have a very low grade fever under his arm. Within a few minutes it spiked to 103, tyelenol had to be given and his blood taken and cultured ASAP. A few days later, I was staring at Nevan... As I do most of my day, and I felt that his skin and his eyes were a bit yellow. I told the nurse and she said that he seemed normal to her. Later in the morning his Dr came in and I asked if he had his liver function tested recently because I thought Nevan's eyes looked a bit yellow. He took a look and said he looked fine but they will monitor. Later that night I waited for the night nurse to come on shift and asked if she would test his Bilirubin at this 6am blood work. She said "no problem!". The next morning I got a visit from his Dr once again who told me I was right, and that Nevan's Bilirubin was off. These Drs and nurses are amazing, but mommy's and daddy's know their kids best, that's for sure! It's a good thing they consider us a big part of Nevan's team and not just bystanders!
Maria, Nevan's child life worker spoke to us about Nevan losing his hair. This will start to happen about 10 days from now and by the end of the month it will be gone. It will grow back, however Nevan will likely not have hair until somewhere into his second year of treatment. We have changed our minds about shaving it (although daddy will still do this). Maria has reminded us that he will be seeing numerous kids his own age going through the same thing and often this is a similarity that they will find comforting. He will make many little friends during his 2 years at McMaster. It was so comforting to hear that Nevan will be part of a little social group of his own over these next two years as we were quite worried that keeping him isolated would make our already shy kid, even worse.
We called his teacher and spoke about options for school. She is completely on board with supporting us and Nevan with what ever he needs and he will not be held back unless it is at our request. As we monitor Nevan's blood counts daily, we will know when his immune system will be able to tolerate school and when he will just have to stay home. I will be volunteering in his school to help keep an eye on him and help the other kids understand why Nevan will be treated a bit differently than them. We will try and keep things as normal as possible for him without compromising his health. There is a good chance he will be able to attend about 30% of the next school year, which would be amazing for him!
We were also able to talk to Nevan's dietitian Laura. Diet and the way we handle and prepare food will have to change drastically. Frozen and canned vegetables are preferred over fresh. If fresh, everything that can be peeled should be (cucumber, carrots, tomatoes, potatoes etc) and then cooked thoroughly. Absolutely no raw vegetables including lettuce on his sandwiches or salads of any kind. All fruit with a skin must be intact, any fruit that has a puncture he cannot have. Any berry with a step, must have the top half of the berry cut off and Nevan can be served the bottom half. Pre-packaged, pre-processed foods are good... fresh or foods from restaurants... not so good. Food needs to be cooked more frequently, which means more frequent trips to the grocery store. Daily exercise and physiotherapy will help prevent Nevan's muscles and bones to atrophy from the steroids. Phew!! The good news is that our entire family will now be 10x healthier than we ever were and I may finally be able to lose that last 10 lbs!
Cute Story of the Day:
Nevan`s Platelet's are very low and his PICC line is still bleeding. Now it has travelled outside the dressing and is dripping on him...
Nurse Nicole: "Nevan, I am going to put some gauze on your arm so that the blood doesn`t keep dripping on you"
Nevan: "well, be careful please, I`ll show you how to do it"
Nicole (Smiling): "ok Nevan, that would be great!"
Nevan: "you just need to be very slow and not use that much tape.... oh that`s perfect!"
Nicole (Giggling now): "Ok, and what about this part?"
Nevan: "just go slow... you can do it... the other side now... ok, that`s more like it! Good Job!"
Nicole (almost in hysterics): "Thanks for helping me through that Nevan!"
Paint toesies (dad)
Nevan's first phase is now completed. It lasted three days. His next phase will last longer and may be tougher. I asked mommy to stay two nights back to back. He had a lot of meds to take orally for these three days so I thought it best to leave the negotiator at the helm. What takes me (Dad) 20 minutes to negotiate it takes mom 10 and with less of a fight. Definitely the way she can make up roles and stories to go along with what's happening. I took the time at home to keep up on cleaning and phone calls and financials. It's also nice to spend some one on one with Nylah. I picked her up from Nana's house last night having lots of fun watching old videos of Nevan in the backyard. I take her home. It's late so no bath just a bottle and some games and books then bed. The night before I picked her up from daycare and went straight home. After a bottle she disappeared upstairs. 2 minutes later she returns with 2 bottles of pink nail polish. "paint toesies" she says. "fingers too?" I respond. "ya". I talk her into cutting and cleaning her nails first. 8 hours at daycare. Who knows what's under those nails. She sits nicely until I'm done. She even lets me dry them with the hair dryer. That's moms trick. She has different colours for hands and feet. She's happy "priky girl" she says. I get her ready for bed. She wants to play operation. Simple enough right? Not her way of playing. The game rules change every day. I just go with it. I put her in crib, cover and say goodnight. Done. Easiest kid you'll ever put to bed. Half the time she says "bed" on her own. It's best to oblige immediately....
The next day I get her off to daycare. We have to look at the construction vehicles in the parking lot first. They are building a new playground for the toddlers these next few weeks. "Big Crock" she says. Big truck... I drop her off with her teacher. All the teachers there are really great. We chose wisely when considering daycares. Everyone is concerned for Nevan's health. They sent him some of his old favorite daycare cookies.
Today I made him his favorite chocolate chip pancakes. A little burnt again. I need a timer. I bring them down as soon as I'm done.
The drive down highway 8 is peaceful. Fields. Animals. Winding roads. Windows down and tunes cranked. Helps me with the stress. But then I feel sad because Nevan's been locked in a room for past 2 weeks. The guilt sets in. The drive is short enough that I get there before it gets worse...
Pancakes have arrived! He eats well, does his meds with mom and goes for a nap! It's a good day so far. Daddy's turn to sleep over tonight. Video games, movies, treats. Not much different then any other day really! Cross fingers for a 4th "good night" in a row....
Shift Change
I didnt write yesterday. It was another night at home for me and the exhaustion hit me like a tonne of bricks. Craig and I are trying to trade off every day. The idea is that we are able to get rested up and Nevan and Nylah get to spend equal time with both of us. My plan for most nights is to go 'mom'-stop until I am super tired and then go to bed, knowing that I will fall right to sleep and morning will come that much quicker.
It's such an odd place to be right now... For Nevan I want the next 2 years to go by as quickly as possible, but for Nylah, I want to savor every moment and not have her grow up too fast. Last night 'super tired' came super early and by 10pm I was sleeping like a baby....until my actual baby woke up calling for me "mommy pease!" "mommy pease!". Nylah has started waking up every night, all she wants is a bottle and some snuggles and I am happy to oblige! Even with the midnight cuddle session, I was able to squeeze in a good 6 hrs of much needed sleep.
Everyone has warned us that there will be good days and bad days, yesterday was a bad day, today was an amazing day! Saturday night was a tough one. Nevan was having reigers all night and as I climbed into bed with him, his fever shot up to 104. Tylenol was given and I tried to get him back to sleep, but he was too uncomfortable. I think we managed about 2 hours sleep most of which I was sleeping with him in his bed, trying so carefully not to disturb his fresh PICC line. He woke up and seemed to be in a fairly good mood. They began his day with a dose of steroids and that good mood did not last long. He went from happy to barely responsive, staring off into space. This went on, for most of the day with brief moments of interaction throughout afternoon. Finally daddy showed up for shift change. Nevan was engrossed in his transformers movie so I knelt down kissed him good bye and stood to walk away... All of a sudden Nevan started crying. I immediately checked him all over and asked if he was ok and where it hurt and between uncontrollable sobs he said "I don't want Mommy to go!" What do I do now? I know he is sick, but he is also 4 years old and under any other circumstances, no request would be fulfilled if asked during a tantrum. Obviously this situation is different and much of it, the work of the nasty steroids. They have advised us to set some basic ground rules (no hitting, spitting, pushing etc) and then give in to the rest. So I gave in. I picked him up and cuddled him in his bed for about half an hour. He seemed to calm down just as quickly as he had gotten upset and Nylah was waiting patiently for me to take her home, so I attempted my escape for a second time and this time it was successful!.... sort of. I got about half way home and Craig called me and put Nevan on the phone. I could barely understand him, he was crying so hard. Poor Daddy was trying so hard to make it better, but Nevan was beside himself upset. I could hear Craig in the back ground warning me that I may have to turn back. I didn't even talk to Nevan, he wouldn't have heard me anyway. I took a deep breath, hung up the phone and kept drive home. He was safe, Daddy was there as were the nurses and a room filled with everything a little boy could want. He would be fine.... it was Nylah's turn.
The next day I went to the hospital worried that Nevan would be so mad at me for leaving him and I was armed with an explanation as to why.... not needed! Nevan was back! He was happy as could be sitting up in his bed. It was a good day... a very good day actually. We got the results back from his Lumbar Puncture and it came back clear! The Leukemia had not infected his Central Nervous System! Nevan will remain a standard risk patient! Craig left right away as he was utterly spent and needed to rest. Nevan and I spent the afternoon playing games and reading books.
He also got a visit from his Child Life worker Maria. She came in and together we explained to Nevan that his blood got sick, all on it's own and that it wasn't his or anyone elses fault. We also let him know that although he may be able to go home in a few weeks, he would have to come back and visit his friends at McMaster hospital many times, sometimes even for a sleep over. He looked at Maria right in the eyes, the entire time she spoke and listened to her more closely than he has even been listening to his dad and I. I think he really needed to hear this.
Maria, also got him a very special gift! A beautiful Spiderman quilt that was donated by a group in Niagara Falls. Maria decides which of the children get the quilts, and she gave the Spiderman one to Nevan. He loves it! She must have liked seeing the smile on his face, because she came back in 3 times to give him more gifts! Making sick kids happy... what a great job to have!
The day ended in a very special way... Nevan took his meds! Craig let me know that the nurses had to force Nevan's meds down the night before so I started prepping Nevan an hour before. I told him that him, Daddy and I were a great team and that if he didn't take his meds, the nurses would have to come in and break up our team. Down the hatch it went! With a drink of water and a call to the nurses to let them know that he had taken his meds all by himself, he went to bed proud and happy.
Let's see what adventures tomorrow brings!
Cute Story of the day:
The baby down the hall was crying...
Nevan - "Mommy, why is that baby crying? I can't sleep when he is crying"
Me - "That baby is sick and he has to be poked and take medicine just like you.... he just isn't as brave as you, he is too young. That's why he cries"
Nevan - "Well maybe he should come back to the hospital when he grows up a bit because I need my sleep!"
It's such an odd place to be right now... For Nevan I want the next 2 years to go by as quickly as possible, but for Nylah, I want to savor every moment and not have her grow up too fast. Last night 'super tired' came super early and by 10pm I was sleeping like a baby....until my actual baby woke up calling for me "mommy pease!" "mommy pease!". Nylah has started waking up every night, all she wants is a bottle and some snuggles and I am happy to oblige! Even with the midnight cuddle session, I was able to squeeze in a good 6 hrs of much needed sleep.
Everyone has warned us that there will be good days and bad days, yesterday was a bad day, today was an amazing day! Saturday night was a tough one. Nevan was having reigers all night and as I climbed into bed with him, his fever shot up to 104. Tylenol was given and I tried to get him back to sleep, but he was too uncomfortable. I think we managed about 2 hours sleep most of which I was sleeping with him in his bed, trying so carefully not to disturb his fresh PICC line. He woke up and seemed to be in a fairly good mood. They began his day with a dose of steroids and that good mood did not last long. He went from happy to barely responsive, staring off into space. This went on, for most of the day with brief moments of interaction throughout afternoon. Finally daddy showed up for shift change. Nevan was engrossed in his transformers movie so I knelt down kissed him good bye and stood to walk away... All of a sudden Nevan started crying. I immediately checked him all over and asked if he was ok and where it hurt and between uncontrollable sobs he said "I don't want Mommy to go!" What do I do now? I know he is sick, but he is also 4 years old and under any other circumstances, no request would be fulfilled if asked during a tantrum. Obviously this situation is different and much of it, the work of the nasty steroids. They have advised us to set some basic ground rules (no hitting, spitting, pushing etc) and then give in to the rest. So I gave in. I picked him up and cuddled him in his bed for about half an hour. He seemed to calm down just as quickly as he had gotten upset and Nylah was waiting patiently for me to take her home, so I attempted my escape for a second time and this time it was successful!.... sort of. I got about half way home and Craig called me and put Nevan on the phone. I could barely understand him, he was crying so hard. Poor Daddy was trying so hard to make it better, but Nevan was beside himself upset. I could hear Craig in the back ground warning me that I may have to turn back. I didn't even talk to Nevan, he wouldn't have heard me anyway. I took a deep breath, hung up the phone and kept drive home. He was safe, Daddy was there as were the nurses and a room filled with everything a little boy could want. He would be fine.... it was Nylah's turn.
The next day I went to the hospital worried that Nevan would be so mad at me for leaving him and I was armed with an explanation as to why.... not needed! Nevan was back! He was happy as could be sitting up in his bed. It was a good day... a very good day actually. We got the results back from his Lumbar Puncture and it came back clear! The Leukemia had not infected his Central Nervous System! Nevan will remain a standard risk patient! Craig left right away as he was utterly spent and needed to rest. Nevan and I spent the afternoon playing games and reading books.
He also got a visit from his Child Life worker Maria. She came in and together we explained to Nevan that his blood got sick, all on it's own and that it wasn't his or anyone elses fault. We also let him know that although he may be able to go home in a few weeks, he would have to come back and visit his friends at McMaster hospital many times, sometimes even for a sleep over. He looked at Maria right in the eyes, the entire time she spoke and listened to her more closely than he has even been listening to his dad and I. I think he really needed to hear this.
Maria, also got him a very special gift! A beautiful Spiderman quilt that was donated by a group in Niagara Falls. Maria decides which of the children get the quilts, and she gave the Spiderman one to Nevan. He loves it! She must have liked seeing the smile on his face, because she came back in 3 times to give him more gifts! Making sick kids happy... what a great job to have!
The day ended in a very special way... Nevan took his meds! Craig let me know that the nurses had to force Nevan's meds down the night before so I started prepping Nevan an hour before. I told him that him, Daddy and I were a great team and that if he didn't take his meds, the nurses would have to come in and break up our team. Down the hatch it went! With a drink of water and a call to the nurses to let them know that he had taken his meds all by himself, he went to bed proud and happy.
Let's see what adventures tomorrow brings!
Cute Story of the day:
The baby down the hall was crying...
Nevan - "Mommy, why is that baby crying? I can't sleep when he is crying"
Me - "That baby is sick and he has to be poked and take medicine just like you.... he just isn't as brave as you, he is too young. That's why he cries"
Nevan - "Well maybe he should come back to the hospital when he grows up a bit because I need my sleep!"
Monday, July 23, 2012
Dark pools (dad)
Its daddy's shift tonight. Nevan had a great day I heard. He actually went for a real walk. His definition of a walk lately is being chauffeured around in a large adult sized wheel chair. Extra space for baby elephant. He had a little to eat and a nap or two. Played games and had smiles with mommy. Maybe the side affects from the steroid aren't so bad...
I come in and try and get him to spend time with Nylah but he's not interested. Wants to watch his show. Finally it's time for mommy to get home for the night and get some rest. He's not happy. Wants her to stay. I walk her and Nylah down to the car and say good bye. My poor baby girl. She's been thrown about this past week or so. Sleeping at 3 different houses. Strapped in a car seat for the hospital commute for more than an hour a day. No "wawa" in the house to play with. Fortunately she knows everyone in the family well and they all do a great job of entertaining her. It's not the same though. She's already looked over so much as the second child and now even more so. We owe her some special times in the next few weeks. Hopefully we don't loose our whole summer..
I return to find Nevan hunched over his DVD player. Exhausted! He sleeps for a half an hour before auntie and uncle arrive. They try and cheer him up but it's fruitless. He even gets a new picture of his little nephew baby Elliot. A custom Onezie that says "I love my cousin Nevan". He barely turns his eyes to look. I try to encourage him to show his gratitude. I always do that. Part of the reason everyone comments on how well behaved my kids are. But he's not listening this time. I am not pushing anything right now unless it's necessary. We finally get a firm yes out of him on something. He wants to go for a walk. But I have to carry him he says. Done. 30 minutes and his alarms go off. Time to go back and have nurses do their thing.
We get back to bed and it's time to give medicine. He fights me on it. Doesn't like the taste. Im sure none of this is palatable anymore. I try and try to negotiate with him but he doesn't want. I hold him down but he chokes and most of it goes down his face. We were told to let the nurses and doctors be the bad guys for all the tough stuff. So I leave the room and let them force it down his throat. He cries out for me while I'm in the hall. "daddy noooo come back"..... He's the good guy.
I calm him down. But I notice blood on the bed. His new PICC line is bleeding at the site. We have to remove a clear sticky bandage over it to clean. It's the size of a $5 bill and pulling off tape is second to pokes on his list of hates. I try and tell him that it would be worse if he had hairy monkey arms like daddy. We use the orange wipes to help remove the sticky stuff. He talks the nurse through... He'll do it, but his way or not at all.
It's done. Cleaned. Looks good and rebandaged. Gets a treat from the treasure chest. I had to go to the store and fill it back up from all the treasure he's picked out this week. I get him ready for bed. Read him curious George then close his eyes. He's exhausted. He sleeps until next Vitals check. He wakes just before. He's sweating and crying. I can't calm him down. Something's different. He won't respond to me at all. I get right in his face and it's like he can't even see me. His eyes are glassy and pupils look dilated. They're deep dark pools. It takes me 40 minutes to get him to take tylenol chewables that taste like Halloween candy. Finally he takes, drinks them down and sleeps for 6 hours!
The next morning starts with horrible medicine again. I can't bargain with anything. I let the nurses do it and it's better but still traumatic. He naps till lunch. The lunch delivery comes while he's sleeping. Turkey sandwich on bread or chicken burgers with fries? He's four years old. I add some apple slices for desert and call it a meal. He wakes up refreshed and in a great mood. He even jokes around with me. He eats 1/3 of the burger and 4 apples slices. One good side affect of the steroids is a heafty appetite. We enjoy walks and books and a movie before Mommy comes for her sleep over. See you tomorrow buddy. Luv daddy....
Sunday, July 22, 2012
Daddy's buddy (dad)
Last night was the second that I got to sleep over at the hospital with Nevan. This was the first however where we knew what we were up against.
The first night went surprisingly well. Nevan slept all the way through for 9 hours without so much as a cough. Last night however did not go so well. After a week of antibiotics he still has this horrible fever. Now it's preceded by 30 minutes or more of 'reigers', or full body shivers. Just the beginning of our education in medical vocab. Four of these spells and some vomiting with 1-2 hours of sleep in-between sums up the night. I'll have to add that watching the first part of the Transformers 3 movie may have added to the restlessness last night. "I can't sleep daddy, the Transformers were too exciting" uh oh. Better than nightmares I guess. "are you going to tell mommy Nevan?"... " no it's our secret daddy". My boy!
Nevan finally gets some sleep in the early morning. He wakes to the shakes again but Mommy's here to help squeeze them away! The day starts with a good and much needed nap. The rest of the day is filled with more shakes and fever. At 4:00 we get the word that he'll go for surgery but not quite the one we wanted. His fever won't allow a more permanent IV line. And still we are grateful he will have a little more freedom with the one he's getting.
I'm irritated that they won't let me in the room while they give him his "special sleep". As a father you're already second to mom right from day one. I've spent much of the last four years trying to show him that I'm cool too! And that I love and treasure him just as much. I don't like him not seeing me there through all these challenges. They let me stay for the first sleep though. Politics everywhere I guess. The surgery finishes and all goes "well".
I have a hard time with any positive words considering the situation. They seem almost insulting to him. I won't list the things he's seen, done, had done, learned, helped with, hated or even liked about all of this. It's not something you want to see your child experience. Well okay I'll say that he holds the syringe while it's filling with blood so the nurse can switch syringes. Who does that?! A week ago I was in tears at the clinic just because I had to put him in a full body hold while 2 nurses fought to take blood for the blood test that got us where we are today. My son is many things. He is more of a man today than I may ever be. I have tried to show him the way all his life. Sometimes I feel like I'm just standing in his way. He already knows what he's doing. He looks like me but has his mothers best in him.
He's Daddy's Buddy.
The first night went surprisingly well. Nevan slept all the way through for 9 hours without so much as a cough. Last night however did not go so well. After a week of antibiotics he still has this horrible fever. Now it's preceded by 30 minutes or more of 'reigers', or full body shivers. Just the beginning of our education in medical vocab. Four of these spells and some vomiting with 1-2 hours of sleep in-between sums up the night. I'll have to add that watching the first part of the Transformers 3 movie may have added to the restlessness last night. "I can't sleep daddy, the Transformers were too exciting" uh oh. Better than nightmares I guess. "are you going to tell mommy Nevan?"... " no it's our secret daddy". My boy!
Nevan finally gets some sleep in the early morning. He wakes to the shakes again but Mommy's here to help squeeze them away! The day starts with a good and much needed nap. The rest of the day is filled with more shakes and fever. At 4:00 we get the word that he'll go for surgery but not quite the one we wanted. His fever won't allow a more permanent IV line. And still we are grateful he will have a little more freedom with the one he's getting.
I'm irritated that they won't let me in the room while they give him his "special sleep". As a father you're already second to mom right from day one. I've spent much of the last four years trying to show him that I'm cool too! And that I love and treasure him just as much. I don't like him not seeing me there through all these challenges. They let me stay for the first sleep though. Politics everywhere I guess. The surgery finishes and all goes "well".
I have a hard time with any positive words considering the situation. They seem almost insulting to him. I won't list the things he's seen, done, had done, learned, helped with, hated or even liked about all of this. It's not something you want to see your child experience. Well okay I'll say that he holds the syringe while it's filling with blood so the nurse can switch syringes. Who does that?! A week ago I was in tears at the clinic just because I had to put him in a full body hold while 2 nurses fought to take blood for the blood test that got us where we are today. My son is many things. He is more of a man today than I may ever be. I have tried to show him the way all his life. Sometimes I feel like I'm just standing in his way. He already knows what he's doing. He looks like me but has his mothers best in him.
He's Daddy's Buddy.
The Battle Begins....
Today our family began the fight against cancer. The doctors gave us a timeline of exactly what the next 2 years of our lives would look like and today was Day 1. 2 YEARS... Seems like such a long time, but wait.... Wasn't Nylah just born? Didn't Nevan just start day care? Didn't my brother just get married? Nope... All those things were about 2 years ago. This too will fly by; over before we know it.
Nevan's spirits are pretty high. A visit from his good friend Taya yesterday briefly turned him back into a normal 4 year old. He has been having fun and talking a mile a minute about pretty much everything that enters his little head. Medically it has been hard. Nevan has been spiking high fevers numerous times throughout the day which is always preceded by the shakes. His heart rate that was alarmingly high at 167 when he was admitted is rising to 200bpm. Normal heart rate for a healthy 4 year old is between 70 - 100bpm.
We were crossing our fingers that Nevan would kick this fever before today because we wanted him to have a permanent central line put in. This could't be done so he got a PICC line put instead (Peripherally Inserted Central Catheter). This is a tube that gets inserted into Nevan's Bicep, up through his arm and into an artery right above his heart. This will allow his medications to enter his system faster without compromising his smaller veins. During the same surgery, Nevan also had a Lumbar Puncture, Bone Marrow Biopsy and his first dose of Chemo. In preparation for this he was given more platelettes and a drug to help with the side effects of the Chemo.
I am trying to keep all these side effects straight but there are so many. We have been warned of sores in his mouth, loss of taste and smell, nausea and vomiting among others. The worst we have been warned about are the behavioral changes that come with the steroids... The social worker shook her head, looked down and said... "Anita, their bad..." OK... No beating around the bush I guess! Apparently Nevan will have a 180 degree shift in his personality, aggression is a big one. Many parents feel that their child is gone, no longer in there. They have assured us that he is, and after a few months we will get our sweet Nevan back. We have already seen a few changes, mostly due to frustration and a feeling of not being in control of anything in his life anymore...so I try to give him as many choices as I can think of. "Nevan do you want to take this medicine from a syringe, a cup or a spoon?" The question is always the same, the answer is always different. The other day it was "put it drop by drop on my finger and I will lick it off"... Hey, what ever works!
We start everyday cozy in his hospital bed to watch morning cartoons. I stroke his hair the whole time. Mostly because it has always soothed him and partly because I know I won't be able to do this much longer. In about a week or so, Nevan's hair will fall out. Craig and I have decided to shave his head instead of letting it fall out. We will do it in a few days, daddy will also do it. We have told him that it is because this summer is so hot.
So last night I went home.... Only the second time in over a week. The first time I was forced home by Craig who was insistent that I get at least one night of decent rest, Which is probably what I should have done, but didn't. Instead of sleeping alone in my bed, in the deafening silence, I decided to paint Nevan's room! Before we were forced to make the hospital our second home, Nevan chose some paint colors for his brand new room; orange and blue. So now his room is a bright orange with 2 stripes wrapping the room in a beautiful shade of blue. Next step will be to cover the walls with snakes, bugs, lizards and frogs... all the favorites of a little boy. I asked Nevan today if he wanted me to do a superhero room instead, but he said he wanted to stick with reptiles and bugs... so one creepy crawly room coming up.
Last night I decided to start this blog. After I was done, I surfed the web for a bit browsing other cancer blogs... I came upon one that was written by a father who's daughter was fighting cancer, so I stopped to read it. It was well written, truthful yet entertaining, until it stopped very suddenly with a posting that read "2000 - 2010 THE END" ... BAD, BAD, BAD! Up until this point I dared not give my emotions a whole lot of freedom. I knew that at some point the floodgates would open and it would be uncontrollable; I couldn't let that happen in front of Nevan. Last night Nevan was not with me and that poor father's blog caused the dam to break. I cried. I cried for what Nevan was going through now, even more for what was to come. I cried for Nylah who has no comprehension of what is happening except that her best friend is sleeping in the "'pital" and her life has been turned upside down. I even cried for our dog who has been peeing outside the kids bedrooms, because she is stressed that her babies are not safe and sound in their beds at home. I even thought that it wasnt enough... Why am I doing the same thing that I have done so many other times in my life over , what now I realize were such trivial things? This type of situation deserves something greater than just crying. The human body should have a reaction that fits this level of sadness... Crying is not enough...but in the end -it was. It was raw and exhausting....and unbelievably cathartic. My strength is back, my faith renewed and I am ready to fight.
Cute story of the day:
Nevan and I are using a magic pen to make colors on one of his activity books.
Me - "Nevan what colour do you think it will turn?"
Nevan - "blue!!"
Me - "nope green!"
Me - "what about this one?"
Nevan- "yellow!"
Me- "nope brown,"
Nevan - "oh Mommy! These machines are taking all my thinking away!!"
Nevan's spirits are pretty high. A visit from his good friend Taya yesterday briefly turned him back into a normal 4 year old. He has been having fun and talking a mile a minute about pretty much everything that enters his little head. Medically it has been hard. Nevan has been spiking high fevers numerous times throughout the day which is always preceded by the shakes. His heart rate that was alarmingly high at 167 when he was admitted is rising to 200bpm. Normal heart rate for a healthy 4 year old is between 70 - 100bpm.
We were crossing our fingers that Nevan would kick this fever before today because we wanted him to have a permanent central line put in. This could't be done so he got a PICC line put instead (Peripherally Inserted Central Catheter). This is a tube that gets inserted into Nevan's Bicep, up through his arm and into an artery right above his heart. This will allow his medications to enter his system faster without compromising his smaller veins. During the same surgery, Nevan also had a Lumbar Puncture, Bone Marrow Biopsy and his first dose of Chemo. In preparation for this he was given more platelettes and a drug to help with the side effects of the Chemo.
I am trying to keep all these side effects straight but there are so many. We have been warned of sores in his mouth, loss of taste and smell, nausea and vomiting among others. The worst we have been warned about are the behavioral changes that come with the steroids... The social worker shook her head, looked down and said... "Anita, their bad..." OK... No beating around the bush I guess! Apparently Nevan will have a 180 degree shift in his personality, aggression is a big one. Many parents feel that their child is gone, no longer in there. They have assured us that he is, and after a few months we will get our sweet Nevan back. We have already seen a few changes, mostly due to frustration and a feeling of not being in control of anything in his life anymore...so I try to give him as many choices as I can think of. "Nevan do you want to take this medicine from a syringe, a cup or a spoon?" The question is always the same, the answer is always different. The other day it was "put it drop by drop on my finger and I will lick it off"... Hey, what ever works!
We start everyday cozy in his hospital bed to watch morning cartoons. I stroke his hair the whole time. Mostly because it has always soothed him and partly because I know I won't be able to do this much longer. In about a week or so, Nevan's hair will fall out. Craig and I have decided to shave his head instead of letting it fall out. We will do it in a few days, daddy will also do it. We have told him that it is because this summer is so hot.
So last night I went home.... Only the second time in over a week. The first time I was forced home by Craig who was insistent that I get at least one night of decent rest, Which is probably what I should have done, but didn't. Instead of sleeping alone in my bed, in the deafening silence, I decided to paint Nevan's room! Before we were forced to make the hospital our second home, Nevan chose some paint colors for his brand new room; orange and blue. So now his room is a bright orange with 2 stripes wrapping the room in a beautiful shade of blue. Next step will be to cover the walls with snakes, bugs, lizards and frogs... all the favorites of a little boy. I asked Nevan today if he wanted me to do a superhero room instead, but he said he wanted to stick with reptiles and bugs... so one creepy crawly room coming up.
Last night I decided to start this blog. After I was done, I surfed the web for a bit browsing other cancer blogs... I came upon one that was written by a father who's daughter was fighting cancer, so I stopped to read it. It was well written, truthful yet entertaining, until it stopped very suddenly with a posting that read "2000 - 2010 THE END" ... BAD, BAD, BAD! Up until this point I dared not give my emotions a whole lot of freedom. I knew that at some point the floodgates would open and it would be uncontrollable; I couldn't let that happen in front of Nevan. Last night Nevan was not with me and that poor father's blog caused the dam to break. I cried. I cried for what Nevan was going through now, even more for what was to come. I cried for Nylah who has no comprehension of what is happening except that her best friend is sleeping in the "'pital" and her life has been turned upside down. I even cried for our dog who has been peeing outside the kids bedrooms, because she is stressed that her babies are not safe and sound in their beds at home. I even thought that it wasnt enough... Why am I doing the same thing that I have done so many other times in my life over , what now I realize were such trivial things? This type of situation deserves something greater than just crying. The human body should have a reaction that fits this level of sadness... Crying is not enough...but in the end -it was. It was raw and exhausting....and unbelievably cathartic. My strength is back, my faith renewed and I am ready to fight.
Cute story of the day:
Nevan and I are using a magic pen to make colors on one of his activity books.
Me - "Nevan what colour do you think it will turn?"
Nevan - "blue!!"
Me - "nope green!"
Me - "what about this one?"
Nevan- "yellow!"
Me- "nope brown,"
Nevan - "oh Mommy! These machines are taking all my thinking away!!"
Friday, July 20, 2012
Upside down and Inside out
Last night, I took the longest walk of my life. I was sweating, my heart was racing, I could hardly breath... It took about 30 seconds. Last night I walked with my husband into the office of my son's oncologist to find out the diagnosis we were waiting almost a week to hear. "mom, dad we got the results back from Nevan's bone marrow biopsy... He has Pre B Cell Acute Lymphoblastic Leukemia" ... And so begins Our New Life.
I think if I am to be honest with myself, I knew that Nevan had Leukemia when the nurse called last Friday morning before 6am to tell me that Nevan's cell counts were way off and to bring him to the emergency room immediately. It didn't stop me from breaking down sobbing when the pediatrician met me in the emerg, put his hand on my shoulder and said "your son has Leukemia". I have heard other people say that it was very difficult to call and tell their spouse the news... How do they break it to them? I didn't feel this way. I called Craig almost immediately out in the waiting room and just blurted it out. All I wanted was for him to be there, to come as quickly as possible to be by mine and Nevan's side while they packed him up in the ambulance and took him to McMaster Children's Hospital.
It took Nevan 4 visits to the dentist and a whole lot of bribing to get him to open his mouth for the first time; Juice and chocolate always had to be within reach to ever get him to take any sort of medication; and an explanation to the other kids in the waiting room to let them know that going to the optometrist really doesn't hurt and not to judge anything by the screams coming from exam lane 2!
Fast forward to today... 1 week in the hospital; an IV, bloodwork twice daily, a sedated procedure that left him with a need for morphine, 2 blood transfusions and countless blood pressure and temperature checks. This morning I watched Nevan hold the syringe filled with his blood for the nurse who had to reach for an alcohol swab and then say thank you as she walked away. Sniff sniff... Proud mamma.... The strength and resilience of our 4 year old!
So I guess I should start from the beginning and very briefly let you know what got us here in the first place. Nevan had been feeling sick for a while. He always took a long time to kick a cold or cough (but so do so many other kids). He was very picky with his meals and never finished his plate (what kid does?) and he never liked to walk anywhere, always wanted to be carried (isn't that the definition of a 3/4 yr old?) ... All symptoms of Leukemia as we have now learned. We didn't pay any attention to these small and early signs. It was when Nevan seemed to get sad... A sadness we had never seen before and could very confidently say was out of character for any four year old, let alone our happy, mellow little monkey. He also started developing fevers that would start around 6pm and break by morning. The drs told us that it was fairly normal considering he was in kindergarten and Nylah was in daycare and just attributed the sadness to not adjusting well to school and my going back to work. So we started to adjust... I dropped down to part time to try and be there more and Craig and I began spending more and more time with him. His mood did initially perk up quite a bit, but it did nothing for the fevers. On Nylah's second birthday Nevan complained that his neck was sore and later that night after his bath we noticed a lump. Off to the dr we went and again it was blown off as nothing to worry about, but to ease our worry, an ultrasound was requested as well as a CBC (Complete Blood Count). We took Nevan for his bloodwork last Thurs afternoon and before 6am a nurse made a phone call to our home...and here we are.
Ordinarily, one would be able to get a preliminary yet fairly conclusive diagnosis with a test called Flow Cytometry... Nevan had this, but it came back inconclusive. The next step was a Bone Marrow Aspiration... Nevan had this but it came up dry. Last step, a Bone Marrow Biopsy... Nevan had this and it was successful... FINALLY! The problem with this test however is that it takes days for the results to come in...which is the reason our whole family just had the most excruciating week of our lives. So as I said the diagnosis is Pre B Cell ALL. Of all the possible subtypes of Leukemia, this is the best we could have hoped for, highest survival rate, best prognosis... I hate the word relieved... I'm not relieved that my little boy has cancer... but am I whole heartedly grateful that it isnt something more serious.
We have gone through all the normal phases... including asking all those questions we will never have answers to; like "why us?" "why him?" "He is the perfect child... loved by everyone who meets him... what did he do to deserve this?" But what does any kid do to deserve this? Hit their siblings? Throw food at the dinner table? Have a tantrum in the middle of the grocery store? What did any of the 13 kids in the rooms we pass to reach Nevan's do to deserve this? It's so hard... it broke my heart the first day I was there, but as the days passed... I took a little bit of a closer look. One child... maybe 14, laughing with her friends on her cell phone. Another one was maybe 10, pushing his father away to throw him off the game of Wii they were playing. A little sweet pea, down the hall, younger than Nevan caught my eye also... he was upset and crying that the balloon he got from someone had popped... such a non-cancer, normal 3-year old heart break.
This post is called upside down and inside out, because that is exactly what our lives have turned into... not just ours, but everyone who is a constant in Nevan's life feels like they are in a tail spin... including Nylah who asks every morning "Me see wawa a dodo a pital??!!" Translation: "Can I see Nevan sleeping at the hospital?!" (Why does a 2 year old know the word hospital?) Although I certainly don't expect our lives to stay upside down and inside out, this will be a whole new life for us... a life with cancer then remission. Nevan will have Chemotherapy for the next 2 years and then there will be constant monitoring to ensure that he stays in remission for 5 years after that... if that happens... we are pretty much free and clear, although he will visit the amazing people at McMaster Hospital for the rest of his life, where we will be reminded annually of this great battle we are about to enter.
I think that's all for today... after all this is a blog not a Novel! This week end Nevan will go into surgery to have another bone marrow biopsy, a lumbar puncture, a PICC line put in and his first dose of Chemo. Please send well wishes and prayers that he will have a speedy recovery from it all. Craig will also be posting on this blog, we will write for ourselves and on behalf of Nevan and Nylah. Next time I will give you more details about his condition and the details of what will come next... lets first get through this week end. One day at a time, one minute at a time, one second at a time.
Cute story of the day:
As I was changing the tape on Nevan's IV:
Nevan: "Mommy, you would make a great Dr... maybe when you grow up, you should be a Dr",
Me: "No, I am already exactly what I want to be: Nevan and Nylah's mommy... maybe you should be a Dr when you grow up!"
Nevan: Long Pause................."No, I think I'll be Spiderman"
I think if I am to be honest with myself, I knew that Nevan had Leukemia when the nurse called last Friday morning before 6am to tell me that Nevan's cell counts were way off and to bring him to the emergency room immediately. It didn't stop me from breaking down sobbing when the pediatrician met me in the emerg, put his hand on my shoulder and said "your son has Leukemia". I have heard other people say that it was very difficult to call and tell their spouse the news... How do they break it to them? I didn't feel this way. I called Craig almost immediately out in the waiting room and just blurted it out. All I wanted was for him to be there, to come as quickly as possible to be by mine and Nevan's side while they packed him up in the ambulance and took him to McMaster Children's Hospital.
It took Nevan 4 visits to the dentist and a whole lot of bribing to get him to open his mouth for the first time; Juice and chocolate always had to be within reach to ever get him to take any sort of medication; and an explanation to the other kids in the waiting room to let them know that going to the optometrist really doesn't hurt and not to judge anything by the screams coming from exam lane 2!
Fast forward to today... 1 week in the hospital; an IV, bloodwork twice daily, a sedated procedure that left him with a need for morphine, 2 blood transfusions and countless blood pressure and temperature checks. This morning I watched Nevan hold the syringe filled with his blood for the nurse who had to reach for an alcohol swab and then say thank you as she walked away. Sniff sniff... Proud mamma.... The strength and resilience of our 4 year old!
So I guess I should start from the beginning and very briefly let you know what got us here in the first place. Nevan had been feeling sick for a while. He always took a long time to kick a cold or cough (but so do so many other kids). He was very picky with his meals and never finished his plate (what kid does?) and he never liked to walk anywhere, always wanted to be carried (isn't that the definition of a 3/4 yr old?) ... All symptoms of Leukemia as we have now learned. We didn't pay any attention to these small and early signs. It was when Nevan seemed to get sad... A sadness we had never seen before and could very confidently say was out of character for any four year old, let alone our happy, mellow little monkey. He also started developing fevers that would start around 6pm and break by morning. The drs told us that it was fairly normal considering he was in kindergarten and Nylah was in daycare and just attributed the sadness to not adjusting well to school and my going back to work. So we started to adjust... I dropped down to part time to try and be there more and Craig and I began spending more and more time with him. His mood did initially perk up quite a bit, but it did nothing for the fevers. On Nylah's second birthday Nevan complained that his neck was sore and later that night after his bath we noticed a lump. Off to the dr we went and again it was blown off as nothing to worry about, but to ease our worry, an ultrasound was requested as well as a CBC (Complete Blood Count). We took Nevan for his bloodwork last Thurs afternoon and before 6am a nurse made a phone call to our home...and here we are.
Ordinarily, one would be able to get a preliminary yet fairly conclusive diagnosis with a test called Flow Cytometry... Nevan had this, but it came back inconclusive. The next step was a Bone Marrow Aspiration... Nevan had this but it came up dry. Last step, a Bone Marrow Biopsy... Nevan had this and it was successful... FINALLY! The problem with this test however is that it takes days for the results to come in...which is the reason our whole family just had the most excruciating week of our lives. So as I said the diagnosis is Pre B Cell ALL. Of all the possible subtypes of Leukemia, this is the best we could have hoped for, highest survival rate, best prognosis... I hate the word relieved... I'm not relieved that my little boy has cancer... but am I whole heartedly grateful that it isnt something more serious.
We have gone through all the normal phases... including asking all those questions we will never have answers to; like "why us?" "why him?" "He is the perfect child... loved by everyone who meets him... what did he do to deserve this?" But what does any kid do to deserve this? Hit their siblings? Throw food at the dinner table? Have a tantrum in the middle of the grocery store? What did any of the 13 kids in the rooms we pass to reach Nevan's do to deserve this? It's so hard... it broke my heart the first day I was there, but as the days passed... I took a little bit of a closer look. One child... maybe 14, laughing with her friends on her cell phone. Another one was maybe 10, pushing his father away to throw him off the game of Wii they were playing. A little sweet pea, down the hall, younger than Nevan caught my eye also... he was upset and crying that the balloon he got from someone had popped... such a non-cancer, normal 3-year old heart break.
This post is called upside down and inside out, because that is exactly what our lives have turned into... not just ours, but everyone who is a constant in Nevan's life feels like they are in a tail spin... including Nylah who asks every morning "Me see wawa a dodo a pital??!!" Translation: "Can I see Nevan sleeping at the hospital?!" (Why does a 2 year old know the word hospital?) Although I certainly don't expect our lives to stay upside down and inside out, this will be a whole new life for us... a life with cancer then remission. Nevan will have Chemotherapy for the next 2 years and then there will be constant monitoring to ensure that he stays in remission for 5 years after that... if that happens... we are pretty much free and clear, although he will visit the amazing people at McMaster Hospital for the rest of his life, where we will be reminded annually of this great battle we are about to enter.
I think that's all for today... after all this is a blog not a Novel! This week end Nevan will go into surgery to have another bone marrow biopsy, a lumbar puncture, a PICC line put in and his first dose of Chemo. Please send well wishes and prayers that he will have a speedy recovery from it all. Craig will also be posting on this blog, we will write for ourselves and on behalf of Nevan and Nylah. Next time I will give you more details about his condition and the details of what will come next... lets first get through this week end. One day at a time, one minute at a time, one second at a time.
Cute story of the day:
As I was changing the tape on Nevan's IV:
Nevan: "Mommy, you would make a great Dr... maybe when you grow up, you should be a Dr",
Me: "No, I am already exactly what I want to be: Nevan and Nylah's mommy... maybe you should be a Dr when you grow up!"
Nevan: Long Pause................."No, I think I'll be Spiderman"
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