Another day of Rituximub

We had our second treatment of Rituximub today and we had been told last Friday that they would double the dose today so we tried to prepare for it. Got in on time and got Haven set up. Her blood pressure was great and had actually grown a centimeter so that made me excited. Her medication has a side effect of slowing growth - which I don't want with her weight gain.


Haven likes the small wheel chairs and there aren't many around. So when we get to the garage Kris runs around trying to find a chair while I get her port lotion on and get her gear. She got two new masks that are beautiful. This one has colored doggie feet prints all over it. It also doesn't go around the head - the ones from JH kept pulling her hair and bugging her and they would also hit her port if she put her head down. Dad found the masks and ordered them for her. She was not as nervous this time and Nurse Katie was back.

Haven helped (or took control) of cleaning her port and wiping the lotion off. I get freaked at this stuff for some reason. You'd think some of my med schooling would make me ok with it but when it's your child it's just different. Haven likes to watch everything and be part of it all - which is great. Dad usually helps out on this stuff.

Drawing her blood for the week. I just can't believe how well Haven is with all of this. She never cries or gets upset. She just waits to do the parts she can do herself. Katie even let her take the tape off the butterfly which completely freaked me out. I could see it pulling and I know there is a needle in there that's as big as my pinky finger (slight exaggeration)!

The day was a bit quicker. We were out at 2pm today due to the doubling up the dose. Which is great because the 1 hour car drive makes her sick. Haven slept almost all day. You can see it wearing on her now. When she was sleeping we noticed that her circles were getting darker and her eyes looked sunken in. She slept from 10am until 1pm. Even slept through them taking her temp and BP every hour.

We got home and about an hour later she was complaining of chest pains and hard to breathe - she has a slight wheeze and a very phlegmy cough. I tried to get her relaxed. Kris was not home and my mom and dad weren't home yet. I rubbed her chest and tried to calm her down so she wouldn't start hyperventilating again. Kris came home and I ran to get him to check her out. She was very uncomfortable and really hurting. So I called Oncology. They ordered us to Upper Chesapeake Hospital for chest x-rays. We woke Haven up (she had quickly fallen asleep). This was about 40 minutes after it started. Haven woke up and immediately started telling us she felt better. Haven is very smart and if she knows we're talking about going to the doctor she will come up with a good reason that we shouldn't go.

While waiting for the Oncologist to call back again I looked up her medication paperwork. Rare symptoms were everything that Haven was experiencing. So I started to get a bit freaked out.

After much negotiations and another call to Oncology and them hearing her, they canceled the order and said we didn't have to go but that if she has any more pains we have to get to the ER.

Needless to say - tonight we have her on super bed rest and we didn't even make her go to the kitchen to get all her medication!

UUUGGGG ---- this is only our 2nd dose of the Rituximub! I'm gonna be a basket case by the end. I finally have a good reason to look forward to my birthday next year. That will mark the end of Haven's chemo!