Thursday, November 27, 2008

Happy Thanksgiving!

"This is the e-mail I sent out to family & friends. I wanted to share it with those whose e-mail addresses that I don't have... thank you so much for reading my blog and for keeping Mike & our family in your prayers. Happy Thanksgiving!"

For times like this...

For days like this...

For smiles like this...

For laughs like this...

And all the moments in between...
We are truly grateful!
We hope you and your families have a wonderful, blessed & Happy Thanksgiving!! :)

All our love,
Chrissie, Matt, Katie & Mike

Wednesday, November 26, 2008

Week 5 but just as important... Thanksgiving and a Birthday!!

Hi everyone,

I am so sorry I didn't update earlier. I was taking care of Mike all night and all morning today and then when he was finally feeling better I was able to go run some errands and pick Katie up from school.

He is napping now so I can finally sit down and let you all know how things are going. He did really well yesterday. I think the people at Sloan forgot to take their speedy pills yesterday because we were in the PDH (Pediatric Day Hospital) for 4 (yes, FOUR hours) for a push of meds into his mediport that took about 10 seconds! It was frustrating for the adults (my dad came in with us :) ) but Mike was so great. He played and ran around and was just so good. He HATES having the port accessed and he hates when the nurses and Drs come near him but once they finish doing what they have to do, he is great! LOL

So, after they accessed his port we waited for the Dr/NP visit. It went ok... his levels went down again. His platelets are 126 (platelet transfusion level is 100, normal range is 160-400), his WBCs are 4.6 (Normal is 4-11), his HGB is 9.1 (transfusion level is 8, normal range is 13-17) and his ABS Neut is 1.7 (infection fighting antibodies...low end of normal range is 1.5 and they consider them Neutropenic (sp??) when it gets closer to 1.0). So it seems like he is hovering right at the cusp of low end of normal for some and below normal for others. :( The protocol that he is on calls for the 10 week induction phase in which weeks 5 & 6 are just the one drug, the Vincristine. Hopefully with this being week 5 that will help his levels to come back a little since it seems like the Carboplatin is what makes the levels drop so low. So, keep your fingers crossed that those levels go up for the next 2 weeks so that we don't have to worry about transfusions!!

After chemo Mike had a ophthalmologist appointment. I was worried about this one. Not only because I hate eye doctors and because Mike hates any doctor but because I was so worried about what the Dr was going to say. I know that I see a HUGE improvement in his left eye movement so I was hoping that I was not just seeing things. Well... the ophthalmologist agreed with me! He said he sees a really big improvement from just the month ago and that he feels pretty sure that there was no permanent damage to the 6th nerve!! :) HOORAY!!

Now, onto Thanksgiving. Hug every child you know. And when you are done hugging them...hug them once for me. Thank God that they are here, and healthy and that you are lucky enough to love them and know them. I know that I have been squeezing my kiddies a little tighter and a lot more often (if that's possible!) than before. I am so thankful for them. They are truly the lights of my life and I wouldn't trade either of them for anything or anyone in the world. So... this Thanksgiving, first and foremost, I am thankful for my kids. They have taught me so much and I love them more than I could ever express. Next my family...they have been so amazing that I can't even put into words how much they mean to me and how much I appreciate all that they do for and with me and the kids. My friends... I don't think anyone has a more supportive group of friends than I do. They make me laugh when I need it, they let me cry when I need to and they are just always there for me. I don't think any Thanksgiving has meant more to me than this one that we will celebrate tomorrow.

And last, but certainly not least... and yes, it will get it's own post... next Monday, December 1st is Mike's 3rd birthday!! I can't believe he is going to be 3 already! Where did the time go? I can't believe how fast it has gone by so far. And I can't believe how much he has gone through in such a short time. I know, and I pray, that all will be ok and he will have 100 more birthdays!! But... more on that in the Mike's 3rd Birthday post over the weekend!! :)

Well, that's it for now... it is time to wake Mike from his nap so that he sleeps tonight. I hope you all have a Wonderful, Blessed & Happy Thanksgiving!!


Thursday, November 20, 2008

Our latest update... week 4

***Update again... Mike's c-diff came back negative!! :) What a relief... it wouldn't have been serious but it would have been a pain again! I hated waking him in the middle of the night and he was so freaked with the gloves... YAY negative c-diff results!! LOL

**Update -- Mike's c-diff results are not back yet! :( ARGH!! Hopefully we'll get the results tomorrow!!

Hi everyone,

Well, week 4 of chemo is done... only 56 more weeks to go... we hope! We got to Sloan yesterday after a rough morning at home.

Mike hadn't really slept well at all Tuesday night, he was up 8 or 9 times so getting him up at 6:15 was a bit of a challenge since he seemed to be in the deepest sleep he had been in all night! And don't even get me started on waking Katie! She is a nightmare to wake up! That girl loves her sleep and when you have to wake her she is as cranky as can be. So, now it's 6:30 and I have 2 whining, cranky children on my hands and I am getting them both ready for the day ahead.

Thankfully both my Dad and my sister, E, were coming to Sloan with Mike & me yesterday. They were both here to talk to Katie as she was crying that she couldn't come with us and to tell her that E would be here when she got home from school. I have to now call my mom at work as we are leaving the hospital so she can go to Katie's class to tell her that we are on our way home. I can't even imagine how she must feel going to school on Wednesday mornings while Mike & I head off to Sloan knowing that there is a chance that he might have to stay overnight in case of an infection or some other issue. It has to be totally overwhelming and scary for her so I am trying to spend more one on one time with her but it is hard when Mike doesn't want anyone but me when he feels crappy.

And boy, does he feel crappy today. He is downright miserable! :( He is just lounging and cranky and seems uncomfortable. In fact, it isn't even 11 AM and he is up for a nap already! :( I don't know what it is, he is just not right today. And he woke up Tuesday morning with a runny nose and I can't give him any OTC meds other than Tylenol so I am hoping it doesn't turn into anything worse than a little cold.

To top it off, I am waiting for a call from Sloan b/c I had to give them a stool sample from his diaper yesterday. They called last night to tell me that the rapid c-diff test came back positive! :( I can't believe this freaking thing may be back! I really wish this kid could catch a break. They did say that the lab told them that there have been quite a few patients lately that the rapid test have come back positive and then the full culture comes back negative. I hope that is the case today with Mike! I will update on that when I get the call later today.

Anyway, his bloodwork came back screwy because of the cold... his white blood count was down and so were his platelets, neutrophyls and hemoglobin. Thankfully once his cold gets better those should all go back up. Probably not the hemoglobin though, but hopefully that has leveled off to where it is going to stay through the chemo protocol.

And speaking of the chemo protocol... just when it is becoming somewhat routine and the way it is for us now, we got the date for our MRI between the induction round and the 2nd round of chemo. January 13th is the day. The day we find out if this chemo protocol we are following is working, if it is getting rid of the tumor(s), if it is stunting the growth of the tumor(s), or if it is doing nothing and we have to change the medication we are using. I know I am not supposed to look that far forward, that I am supposed to take every day one day at a time but the date is in front of me. They wrote it on an appointment card in pen. I have put it on my calendar and I am worried about it already.

Well, I am going to start my laundry while he is napping so I can spend the rest of the day cuddling with him. I hope you are all doing well. Thank you all for your good thoughts and prayers... Please keep them coming!!


Friday, November 14, 2008

The first 48 hours after chemo...

suck. I think that's the only way to put it. They suck. Mike has waves of what I think is nausea. I say what I think because he is really too little to tell me what he is feeling. He just comes over with his hands on his face saying, "Mommy up" and I scoop him up into my arms and he just stays there. He curls himself up on my shoulder with his thumb in his mouth until it passes. They usually come about every hour. I feel so bad for him when they come... he just gets that puking look and looks so pathetic and uncomfortable.
The good part about it is that he's 2... so he lets the wave pass and then gets up and runs and plays again like nothing has happened. Not like adults who have that wave and then anticipate the next one.
The jaw pain is also here still. Apparently that won't go away until after chemo ends. I am just hoping and praying that it doesn't get worse. He is still eating though!
He is so tired too. While he used to be able to run around for hours he is now running for about 45 minutes and then he just sits and plays or watches a dvd. He curls up on the couch and lays down and just chills out. His naps have gone from 1 hour to 3 hours daily now. He is up during the night too but he tries to make up for the waking up by sleeping until 8.
It is also getting more noticeable that his hair is thinning. It's mostly on the sides right now but it follows his hair line. I hate finding his little hairs on my pillow, on his shirt, on my shirt... it's such a physical reminder of everything.
I hate what this chemo does...And through it all he plays and laughs and runs and he is just amazing!

Anyway, that's the update on Mike for now. Again, please keep those prayers coming...


Wednesday, November 12, 2008

Week 3 update...

Well today was week 3 of chemo. It was a crazy morning here. Katie was really upset with us going to the hospital this morning. She was so afraid of us going and not coming home tonight that she was hysterical crying before we left. I was so relieved when we finished the treatment early enough for me to get home and pick her up. She was so excited to see my dad, Mike & me at pickup that she was giddy and hysterical laughing! :) It was great to see that!

Well, onto Mike...he did so well today! He is such an amazing trooper. He still HATES the medical profession as a whole but as soon as they look like they are leaving the room he is ok. That's a big improvement from the beginning when he cried for a few minutes after they left! The fact that he stops crying when they are in the room is a HUGE step forward.

I was told again today that I need to glove up for the first 48 hours of diaper changes after treatment. Chemo is excreted in the urine and since I have to change him I need to be gloved so as not to expose myself to chemo meds. I was so glad to have that tip from Mike's nurse about the Emla (numbing) cream... instead of bandaging it on so that it doesn't rub off into his clothes, I cover it with Glad Press n' Seal! It keeps the cream on without adhesive on his skin so it won't irritate him after a while and it doesn't hurt coming off!! Definitely a HUGE plus for us since accessing the port is a HUGE anxiety-ridden ordeal.

So, his counts, for the most part were great. The only thing that went down this week was his hemoglobin again. It is at 10.4. They start talking about transfusions when it gets down to an 8. I went down to the blood bank today to talk to them since Matt and I have an antigen/antibody issue that could affect our donating blood to him. In fact, they said that neither one of us would probably be good candidates for donating blood for Mike... Matt due to the fact that they don't want Mike to develop antibodies to the antigen in Matt's blood b/c then he would reject the transfusions and me because they don't want to introduce new antibodies to him that aren't necessary for him to have. They are going to type and cross him next week just in case and test for antibody titers and antigens in his blood. If we should get closer to the possibility of a transfusion I will get all the info I can to have blood donations made for him and in his name.

The BEST part of the day was... the surgeon didn't feel a hernia in his scrotum!! He thinks that I may have been right and what he was feeling a few weeks ago was excess fluid from the shunt and steroids. He will check him again in a few weeks to be sure but he was prettu certain that Mike won't need the testicular surgery!! :) YAY!! That is definitely one piece of good news that I needed! :)

Well, I am off to do homework with Katie. Hope you are all doing well!! Please keep those prayers coming...


Friday, November 7, 2008

Speaking of side effects...

Here we are, about 48 hours after the administration of week 2 of chemo and already we have waves of nausea and hair thinning. The poor little man just whines and runs over to me to pick him up when he doesn't feel good. I pick him up, he curls up on me, sucks his thumb and just leans on my shoulder. And I just hold him... and we cuddle through it.

The hair freaked me out yesterday. I felt like it is so early for that to start but I guess not. There were stray hairs on the back of his shirt yesterday, in his crib this morning and on my pillow when he laid down with me at 5:30 this morning.

I hate this. I hate that the medication that is supposed to make him better makes him sick. I hate that there is no cure or medicine that isn't so hard on people. I hate that he is 2 years old and going through this.

I am off to cuddle with my little man again. Please keep those prayers coming!

Love to you all,


Thursday, November 6, 2008

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,

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,


Saturday, November 1, 2008

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 :)