Can this kid PLEASE catch a break?!

Hi everyone...

Yes, the saga continues and nope, there is never a dull moment.
On the plus side, Mike took all 5 nights of chemo like a champ! I was so thrilled!
On the down side...On Saturday when I got home from Katie's birthday party I woke Mike up from his nap to get him ready to go up to my in-law's house. When I went to change his diaper I noticed that his left testicle was big again. I immediately called MSKCC to talk to the fellow but wasn't beside myself worried about it. I figured it was the fluid from the VP shunt draining again and since he isn't walking and getting around as much it was pooling in his scrotum again. The pediatric fellow said that as long as it wasn't red, hot to the touch and he wasn't running a fever and he wasn't vomiting it was ok to not come in to the urgent care that afternoon but that I should bring him in on Monday morning at 8:30AM. So, Matt & I drove upstate for the night.
By the time I put him to bed Sat night everything looked good. It looked like it was back to normal. Sunday morning around 10 it looked like things were puffing up again and then that afternoon it was ok again. So, off to MSKCC we went this morning! Thankfully, my BFF, J, was able to come in with Mike & me. It always helps to have another set of ears! The surgeon took one look and feel and said that he felt the hernias in both sides of Mike's scrotal sac. So, as of right now, surgery is being scheduled for Friday and if that is the case then we will have to go in on Wed for pre-op. :( We had to cancel the PT appointments that we had set up for this week so that we didn't aggravate the hernias any more.
Please keep Mike in your prayers. I hope you are all doing well!!

Love and hugs to you all!!

~~Chrissie

To G-tube or not to G-tube... we got our answer...

Hi everyone!

I know, our appt was Wednesday and it's Saturday. That's 3 days and I haven't updated. You need to understand something though... Katie's birthday was on Wednesday. She turned 7. She has been talking about turning 7 since the day after she turned 6! On New Year's Day she woke up yelling, 'It's January! Finally! It's my birthday month!' So, while Wed was an important day for Mike, it was an important day for Katie too. And so was Thursday and Friday and today. I swear, there isn't a year that goes by that Katie doesn't have at least 3 birthday cakes and a week long celebration! This kid LOVES her birthday! LOL
So, now that you know why I have been MIA now I will fill you in on what happened on Wed. We saw Dr. L. He is very nice and very informative. I was thrilled when he said that they were ok with me trying to administer the chemo orally for the 2 rounds and then re-visiting the g-tube discussion after the scans come back and show that this Temozolomide (Temodar) is doing what it needs to do. Then he dropped the bomb... we were starting that night. They called in the prescription for the chemo and an hour later we were heading home with a compounded liquid chemo for me to give to Mike. We got it at Cherry's Pharmacy in Manhattan, right up the block from MSKCC. What a great pharmacy, by the way! They are mainly a kids' pharmacy... flavor EVERYTHING, they compound pills into liquid or other forms for the kids that can't take pills, they sell all sorts of kid OTC meds, they have a train on the ceiling and a train table on the floor. And, they are great and the Drs at MSKCC trust them to give me the right chemo... so I guess that means I have to trust them too, right?
Anywho... we got home and I dreaded the chemo time all day. They told me that my best bet is to give it to Mike at night so he can sleep through the worst of the nausea. The catch is, that he has to take it on an empty stomach. For Mike the grazer that was going to be hard b/c you very rarely find him without cheerios or waffles or pretzel sticks in front of him! Not to mention that there went my idea of hiding it in ketchup and eggs, or bribing him with cookies or waffles... I just had to give him the meds. I had to give him Zofran (anti-nausea) and then give him the chemo 1/2 hour after that. The first night went AMAZING! Don't get me wrong, the idea of drawing up chemo to give to my 3 year old son was horrible. My hands were shaking and I just kept telling myself that this one is going to work, this is going to be it. I mean, there was some level of semi-denial about what you were giving him when the nurses were administering it. You could blame them when he was sick, you could say that they were trained and they know what they are doing when they give him this medicine. I worked on Wall Street, I did privacy compliance work and I'm his mom, am I really going to be able to do this? Well, I did it. I wish I could say that I didn't surprise myself, but I did. It's amazing how you really do just do what you have to when you need to.
My mom held him in a cradling position and he took both the Zofran and Temodar like a champ. Don't get me wrong, he cried and he fussed but once I got the syringe in his mouth and squirted the meds in he took them!
Last night, Friday, was night 3 of 5. He has been great taking it all 3 nights. Just 2 more to go! Wish us luck that the next 2 go as well as the first 3!
I am off to Katie's birthday party with her friends for birthday cake and celebration number 3 and then we are heading up to my in-laws for cake and celebration number 4! Chemo will be at my in-laws tonight... I hope we do as well up there as we are doing down here!

Please keep those prayers coming! I hope all is well with all of you and your families!

Love & Hugs,
Chrissie

A new treatment plan?? Another surgery??

Hi everyone...

On Thursday, shortly after I wrote about Tuesday, I got a call from the Drs at MSKCC. The Dr that called me was Dr. B. He was the Dr. that we saw on Tuesday afternoon when we got the MRI results. Anyway, Dr. B said that he spoke to Dr. G and Dr. D and they came up with a new treatment plan. They feel that the best chemo drug to try now is Temozolomide. It would be given once a day for 5 days and then he would have 23 days off of the meds. Then start the once a day for 5 days and 23 days off again. After the 2nd round we would go in for another scan to see if this treatment is working. If it is this treatment could go on for at least a year. Temozolomide (or Temodar) is an oral chemo drug that interferes with the DNA reproduction of the tumor cells. The side effects are as concerning as the last protocol, like they are with every chemo drug. The major ones seem to be nausea/vomiting/diarrhea and myelosuppression & the dropping of blood counts, so it looks like there will be many more transfusions in our future. (So PLEASE donate in Mike's name!! Unfortunately you can only donate for him AT MSKCC because they don't accept blood from anywhere else. I will send you the info if you need it!). Thankfully the peripheral neuropathy issues aren't listed as a major side effect so I am hoping that between the new chemo and the physical therapy he will get back on his feet soon!!
One of the problems with deciding to go with this treatment is that it is an oral chemo. And not just any oral chemo, it's a pill. Now, anyone who knows Mike should know that his diet consists of Cheerios, pretzel sticks, Belgian waffles, pancakes, french fries and eggs with ketchup. He has always had a horrible diet and it has only gotten worse on chemo. So, since sticking myself with hot pokers once a day would be easier than getting him to take a pill that is going to make him feel sick they want to talk about putting in a G-tube. A G-tube is a temporary (but long term... can last for 6 months before needing to be changed) feeding tube placed in Mike's abdomen. I will have to administer the chemo at home through this G-tube. I am a mess about possibly having to have this done. I guess a plus to this g-tube is that I will be able to give Mike nutritional supplements through it as well to ensure that he is getting the calories, vitamins and minerals that he needs to get through this chemo like the champ he is.
Now, onto my issues... I am losing my mind thinking about doing all of the G-tube stuff at home so I am calling all nurses and medical professionals to help teach me and watch me until I am comfortable doing it on my own!! Any advice pre-G tube you can give, any post-G tube teaching and tips you can give are GREATLY appreciated! And if you can come over to check and help me as I am doing everything the first week or two I would LOVE that... send me an e-mail, a message on Facebook or call me and I would love any help and/or advice you could give me.
So, we go into MSKCC on Wednesday (which ALSO happens to be Katie's 7th birthday!! :) YAY!) to talk to the Neuro-Oncology team about the new chemo and the Surgery Team about the G-tube. I have a bunch of ??s to ask already and I am sure there are only more to come to me. My mom is coming with me so she can be another set of ears when I am talking to the Drs and my sister E is coming to entertain Mike so I can actually carry on a conversation with the Drs. I am hoping to get answers to all of my questions so that I can be comfortable with my decision.
Well, that's it for now... I will update after our appointments on Wednesday. Please keep those prayers coming! Sending love and hugs to you all!!

Love,
~Chrissie