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!"
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