Wednesday, November 5, 2008

How week 1 went and the start of week 2... all rolled into one post!

Ok everyone, I know, I have really been slacking on updating this blog. It has been so nutty here that I just haven't had time to sit and really update.

One of the problems I am having is that I don't know anything about any of this stuff. I don't know what's normal on chemo and what isn't. I don't know if little things Mike does are chemo related or if they are something else. On Sunday Mike started holding his face right under his ears every time he sat down to eat. He would grab his face for the first and second bites and say 'Ow'. Now, it could be teeth coming in, it could be another ear infection or it could be something chemo related. Today I found out it is probably chemo related. The Vincristine causes big joint pain and one of the first places it comes out is in the jaw. So, looks like side effect number one has arrived.

While we are on the topic of side effects... side effect number 2 is here as well. And it is causing a number 2 issue... constipation. Good Lord, I feel like I have a colic-y newborn again. The poor little guy is so uncomfortable. He will be ok and then all of a sudden you can tell he is not ok and he is whining, 'Mommy UP' and once you get him in your arms he folds his knees into his chest. Or he will just lay down and curl up with his knees in his chest. There are days he doesn't go and then the next day he is extremely miserable because not only did he not go but he had been up 4, 5 or 6 times overnight w/ belly cramps. It really is heart breaking. We have him on a stool softener but it isn't helping enough to really make a difference. The NP today said that we should change it to another one. I am hoping that one works because the poor kid has some really bad moments. :(

Katie had a crappy week. She had a great time at a Halloween party with girls from her class on Sat night but then on Sunday she started complaining of her belly bothering her. She had the opposite issue of Mike... she went all day on Sunday. And all night Sunday night. And of course, she couldn't get up when Mike was up, she had to get up right after I fell back to sleep from getting up with him. So, needless to say, she didn't go to school on Monday. She was doing fine at home that day so I sent her to school on Tuesday... only to get a call to come get her after lunch. The poor kid was absolutely fine all day at home after I got her. She is really too much like her mother, worry and don't talk about things until they make you sick. That horrible sour, sick stomach and that just want to cry feeling. I think that the anticipation of today got the best of her.

So, that brings me to today. Day 1 of week 2 of the 10/12-week induction phase of chemo. Katie came with us today. She had a 1/2 day of school so I had decided last week to take her out for the day and have her talk to the Child Life therapists at the Pediatric Day Hospital. I think it helped her a lot to get in there and see where Mike goes every week. Now it isn't this scary place that we talk about but a fun place where Wednesday is 'Make your own pizza day' and there are clowns in lab coats walking around, where all the nurses are so nice and there are small boxes of cereal in the family pantry and toys and crafts in the playroom. She let the child life therapist talk to her but she stayed very quiet during the whole thing. For those of you who know Katie, yes, I swear, she stayed VERY quiet. She has, unfortunately, inherited the L*****o gene that tells you, 'if you don't talk about it, it isn't happening'. Yeah, it's a great defense mechanism in the short term... long term it sucks. It was hard for her to see the kids there though. Even though they were playing and laughing, they were hooked up to IV poles and bald. Can we say, 'tens of thousands of dollars in therapy coming her way?'. But, all in all she had a pretty good day. She made her own pizza, decorated her own umbrella and played for hours. Mike was so excited that she was there too. I swear, and I say it ALL the time, SHE is his best medicine.

And onto Mike and Chemo day. The ran his bloodwork and his hemoglobin level is down. Apparently that's normal for people on chemo. They said he may show signs of getting tired faster (hasn't showed that sign yet!) but it wasn't low enough to warrant talking about transfusions. Normal is 13, his is at 11.3 and they start getting worried at 8. So, he's ok. We have orders to see a pediatric Gastro-intestinal Dr so that we can talk about starting to introduce lactose and soy since he is almost 3 and it should be ok to slowly start that. The neuro-onc Drs feel that we should have a GI Dr watch him with that since they know the intolerances better than the oncologists. And speaking of specialists... the neuro-onc team got in touch with a pathologist in Texas that I asked them to speak to. This Pathologist studies unclassifiable and unidentifiable tumors and tests them to see what chemos will work best on them. I am anxiously awaiting the pathologists response to the Drs here to see if he would be willing to take Mike's case and what we have to do to get that done! I don't care what needs to be done, I will do it if these Drs think that this pathologist can really figure out what to give him to get rid of these tumors! Now, onto the nutritionist. She gave us a sample of a supplement to try to give to Mike since he has not only 'picky eater syndrome' but the intolerances and now the jaw pain and constipation. I have to figure out a way to get him to take it b/c it smells like crap... I tried to get him to drink it by itself today and he took one sniff and ran! I am going to have to get very creative with this...

Anway, please think good thoughts about this pathologist in Texas! I know that whatever happens happens for a reason but I can't believe that I found this person and we can't benefit from him! And PLEASE, please, please keep those prayers coming!!

Love to you all,

Chrissie

3 comments:

Eileen said...

Hey Chrissie. I'm so sorry that you haven't had a diagnosis yet, and that Mike is having a rough time with the chemo. I hope things get better soon. I've been keeping in touch with Eileen, and keeping up with your blog. You guys are definitely in my thoughts and prayers. Anyway, as for the supplement, is it possible to put chocolate syrup in it? Good Luck!

With Love, Eileen McHale

DysFUNctional Mom said...

That's so sweet about his sister. I'm glad she was able to come and hopefully have her fears alleviated somewhat.
Continued prayers & well wishes!

Kimmie5 said...

Chrissie, I am praying so hard everyday for Mikey to have the strength he needs to beat this and for you to find as well. You are an amazing lady Chrissie. I don't know anyone else that could do all you are doing for your Mikey. I can't ever in a million years know what you are going through and I prayed on just as many you never had to find out. I'm keeping my fingers crossed the doctors in Texas find out just what this thing is. I know they will!! They just must.

Please give Mikey lots of hugs and kisses from us. I wish I could be there to help you, you have no idea..I'd be there in a heartbeat to even just sit next to you and give you a hug.

Me