Bravery Beads

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. :)