Chemo Week 6... not a good week...

Hi everyone...

I am going to make this short because I am exhausted and need to take care of Mike. We had week 6 of chemo today. First they drew blood when they accessed the port and we waited... and waited and were finally called in to see the Dr and NP. Well, the NP we love, Mary, was in the room and started by telling us (my BFF J and me) that if this were a week where he was supposed to get the carboplatin he wouldn't be getting his chemo this week b/c his numbers were so bad. (I added a list on the right side of the page of the normal ranges of lab levels so you can reference them whenever you read) His platelets were great at 258. But that was the only one that was good...his white blood count is 3.0, his ABS Neut is 0.3 and his HGB is 8.1. :( So... he is officially neurtropenic. They had to place an inflaport (I think that's what it was called) in the back of his left arm so that I (or in this case, J's aunt who is a nurse b/c Mommy is to chicken to do it) can inject a drug called Neupogen to help bring his counts up. We have to go back on Friday to get his bloods drawn again and since his HGB is so low if it gets to 8.0 they will have to do a transfusion. :( Also, I have to take his temperature 4 times a day and if it gets to 100.4 I have to call them and if it gets to 101 I have to bring him right in to Sloan. If he should wake up in the middle of the night with a high fever I have to bring him right to an ER. A lot of scary instructions but we will get through it and I am hoping and praying the Neupogen helps sooner rather than later!!
They did give him the Vincristine today though since that chemo drug isn't supposed to lower the levels. So, at least we are staying on schedule.
They also told me that they are going to refer him to the Make A Wish Foundation. I had always thought that the only kids who were referred to that were terminal kids but now any child that has a chronic health condition can be referred. We shall see what happens with that.
Well, that's all for now... a lot to take in and a lot to deal with. He was amazing again today and I am so glad J was able to come with us. It was so great to have him there.

I will try to update tomorrow on how Mike is doing! Please continue to keep Mike and our family in your prayers!

Love to you all,
Chrissie

The Pedi GI Doctor... 12/2/08

Hi everyone!

While the kids are laying in bed I thought I would take this time to update you all on the appointment today instead of adding it to tomorrow's chemo update and making it, yet another, loooong blog! :)

I have to start out by saying I LOVE LOVE LOVE our new pediatrician. He is wonderful! Since I love him so much I absolutely trusted the first doctor that he referred us to for Mike's GI consult. And I am soooo glad I did. She was great! First, any doctor that comes in early so that one patient who is on chemo doesn't have to sit in a waiting room full of sick children gets a BIG plus in the pro column. Second, any doctor who spends 1 Hour 15 minutes with a patient gets another BIG plus in the pro column! She was great! She was so thorough and so patient with Mike. (He can be a real challenge for the medical professionals that have to check him out.)

So, here's the upshot of the visit. First, his eating habits suck. They always have and now that he is on chemo I am trying my hardest to get him to eat more. She said that as long as he is eating let him eat what he will. It would be great to have more of a balanced diet going on but I have to take what I can get right now. She gave us a supplement to try adding to his rice milk. I just tried it tonight and he didn't like it too much so I'm hoping the more I expose him to it the more likely he will be to try it. Next, we can't do any allergy testing on Mike right now b/c the chemo will have altered the blood work and any reactions he would have to any substance. So allergy testing is postponned for at least 14 months. The 3rd thing is that she wanted blood work done. Now, most of you don't know Mike and the medical profession. I was being kind before when I said he is a challenge. As his mom it is heart breaking to watch him and have to be the one to hold him and try to keep him calm and still. He HATES doctors and nurses and pretty much the medical profession as a whole. He screams, yells, kicks, cries, flails around, waves his arms and tosses and turns as much as he can to get them to not touch him. Sooo... with that being said, she wasn't too thrilled with the idea of drawing blood herself or one of her nurses drawing blood. I called Sloan because our appt is tomorrow anyway and they said that they would add her labs to his orders and draw the blood from him when they access the port tomorrow. That saved Mike (and me... and the medical staff in her office!) a HUGE amount of heartache and stress today! Tomorrow it won't add any more time or pain or aggravation to his appt, just add a few more vials of blood taken from the port when they access him. Lastly, she wants me to talk to the neuro-oncology team about vitamins. Now, I had been giving him multi-vitamins when we were in Florida because his diet was so bad but when I got to Sloan they said don't give him anymore. The GI dr. asked why and I was truthful when I told her that I just don't know. Everything had happened so fast I just kind of took what they said about the multi-vitamin and didn't question it(probably the only thing I didn't question!! lol). So, that goes on my list of questions for tomorrow!!

All in all, it was a good visit. She was very informative and seems very on the ball about things. She was great with Mike and listened to everything I had to say. We go back to see her on 1/6 but she wants me to call her next week to let her know how the supplements are going.

Hopefully we will have answers to the multi-vitamin question and blood results tomorrow so I will update on those in the Chemo Week 6 blog.

Hope you are all well. Please keep those good thoughts and prayers coming!!

Love to you all,
Chrissie

Mike's birthday!! :) (And yes, there's more...)

Hi everyone!! :)

Well, here it is... Mike's 3rd birthday! I can't believe he is 3 already! I feel like it was just yesterday that I was being admitted to the hospital... and here he is, walking and talking and bossing us all around! He has been through so much in such a short time, and he has such a long road ahead of him. He is such an amazing little guy. I hope and pray for 100 more happy birthdays for him. I think if I go on anymore though I am going to cry and go on for days so I am going to leave it at that.

We had his family birthday party on Saturday. I was so thrilled he was feeling great that day! :) He had so much fun, he played and ran around and was just loving all of the attention! :) My sister E brough over Thomas the Train balloons and we had Thomas stuff all over the house! He even had on a Thomas shirt. :) And he LOVED all of the presents that he got... and I think he got enough presents to fill a Toys R Us stock room!! LOL I think everyone had a great time! It was so nice to have the whole family, both sides of mine and my in-laws here to celebrate Mike's birthday! I will post pictures at the end of the blog :)

Today, I brought Katie to the Dr. She has the start of pneumonia. She has had a cough since Friday and this morning she sounded horrible! So, off we went. He put her on meds and said that she can go to school tomorrow as long as she doesn't have a fever tonight.

Mike has an appt w/ a pediatric gastro dr tomorrow. He has to be there at 12:45 so I will update on that when we get home. Please wish us luck with that appt! I am hoping to find out that we can start to try him on lactose &/or soy even though he is on chemo!! It would be so great to be able to try to expand his diet... he needs to be eating more than he is!

Chemo day is back to Wed this week. My best friend J is coming with us this week. :) Please pray and cross your fingers that Mike's counts are up this week!!

Here are the pictures from Mike's birthday party this weekend :)We had ordered the cake from a bakery in Brooklyn but since they don't decorate the cakes my Mom made the train tracks for the cake topper set we got!! :) She did an amazing job! I had been able to find cake mix and icing that were soy and lactose free so I made Mike cupcakes that he could eat too!! :) There is also a picture of him playing with his new Thomas the Train table & train set! :)














With Love,

Chrissie