Q&A with Katie this morning...

Good morning!

What a night we had here!! Mike slept great. He asked to go to bed around 8 and fell asleep within 20 minutes. He even pooped in the middle of the night and let me change him without waking up! Katie, on the other hand, is a ball of worries and stress.

She was up 8 times going to the bathroom. And every time she woke me up and made me come to the bathroom with her. I would sit on the floor and she would sit on the toilet doing absolutely nothing just whining that her belly hurt. Finally, at 5:30 this morning during the 8th wake up she said, 'I'm homesick. I miss Daddy and Pugsley and Tuck'. (Daddy, our dog and the turtle) Now, I knew that was my opening telling me that she was ready to talk. So, I said, 'I know, we both miss Daddy and Pugsley and Tuck but you know Daddy is going to come back up here soon and that in the spring he is going to try to be able to move back to NY to be with us, right'. She said she didn't know that but that it made her happy. So she fell back to sleep. The alarm went off at 6:45 to get her up and ready and she was a bundle of mess. And I mean, a MESS. I decided that this was the time to talk to her. Yesterday was the prep work and now I had to get it out of her.

So, as I went to get her uniform I told her that I know everything that is going on is scary and I know that she is confused, upset and worried but that I hoped she knew that she could ask me anything and I would answer it the best that I could. So, finally it started...

Why do the kids in the hospital not wear hospital gowns?

How do they get the tubes on the kids?

How can they run around and play with the tubes coming out of them?

Do the tubes hurt when they are playing?

What happens if they run too fast and forget the pole? Will the needle come out and hurt them?

Why did some of the kids not feel good and just lay down while they were getting their medicine?

Why does the medicine make some kids sick? Isn't it supposed to make the kids better?

Why do a lot of the kids have no hair?

Some of the kids have stitches in their heads. Why didn't the stitches hold their hair in?

Will Mike have no hair?

Why are all of the kids in that hospital?

How did Mike's tumor get in his back and brain?

How did K's lump get behind her eye? (K is a girl in her class w/ a benign brain tumor near her ocular nerve undergoing chemo at Sloan too... Katie just doesn't get away from it so I know that is hard on her to see her friend not feeling well while she is seeing her brother not feeling well.)

When I wash my hands I feel my spine move. Is that ok? (This one killed me... I felt like it really got to the bottom of a lot of her worry)


I really answered all the questions the best that I could while trying to make the answers 6-year old friendly. She is so bright and intuitive that I didn't want to downplay or not answer anything so I did answer everything and was honest about everything. I told her that we don't know if Mike would lose his hair, that stitches don't hold hair in but put the skin back together after an operation, that the tumors and lumps have been there for a long time, that the nurses bandage the tubes in the kids well enough that they won't come out, that the medicine sometimes makes the kids tired and bothers their belly because it has to be so strong to get rid of the bad tumor cells and that it really is ok that her spine moves when she washes her hands, that she is healthy and smart and definitely the best big sister out there.

This poor kid has so much going through her head. I was so glad that she was able to come yesterday to see everything and get the flow of questions going. I think she really needs that. I will definitely be spending a lot of one-on-one time with her as often as I can because I know she needs that.

I keep reminding myself, I don't get it. I don't like it, it makes me crazy and worried and stressed and upset... she's 6. I can't imagine what goes through her head. I just hope that she keeps asking questions and talking to me about it.

Anyway, I just wanted to share this morning with you all. Thank you again for your prayers, please keep them coming!!

Love to you all,
Chrissie

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

Halloween!! :)

I just wanted to share some pictures from yesterday for all those of you that are reading and whose e-mails I don't have. Both kids had a BLAST yesterday. I am so grateful that Mike was feeling good enough to enjoy the day. He ended up crashing at 7:30 last night and didn't really have a restful sleep so we are just going to relax today. Here are some pictures of Dorothy and Dino Mike :)