Monday, January 28, 2008

Chemo maybe Friday?

Cohen's platelets aren't where they need to be in order to start chemo. He is at 61 and they need to be in the 70's. His red and white blood cells are right where they need to be. Which means we get to stop the neupogen shot. Poor kid, yesterday he was limping on his right leg. The doctors told me that the bones can get achy from the neupogen shot. So that's what we are thinking. They said I could give him tylenol for it as long as he doesn't have a fever. But of course he did. It was at 100.4. If it is 100.3 or higher we need to wait an hour check it again and if it is that or higher take him into PCMC. If it is 101.3 we have to take him right in. Luckily it went down to 100 then went away. He is doing much better today. He hasn't limped at all.... They are going to check his blood on Thursday and hopefully start chemo on Friday.
We met with his surgeon, Dr. Meyers. today to review and schedule his surgery. If everything goes well it will be on February 20th. She is going to go in and remove as much of the tumor as she can. He will then be admitted to the PICU because abdominal surgery is very painful and he'll need to be on a lot of pain medication and the ventilator. He wont start chemo until he has completely healed from the surgery because it could kill him... The chemo kills off the fast growing cells and after surgery everything is fast growing so it can heal. He'll heal in 2 weeks to 3 months.
Thank you so much for keeping him in your prayers. The next few things (surgery, high dose chemo, and irradiation) are going to be very hard on him.

Sunday, January 27, 2008

My cute little boy

Cohen has been so cute lately; I love it. He's really lovey to everyone and he says the cutest things. He started making the kissing sound when he kisses and he started putting his arms around our necks when he hugs. He use to just put his head in to us to give us a hug. He's really cuddly too. Cohen is also becoming very mischievous. He really likes to throw things. He knows when he is doing something naughty because when I catch him he says no no before I can. :o) All in all he is such a sweet little boy. I just love this time that we are able to spend with him. Heavenly Father has blessed us with such a cute boy (and girl.) We are so lucky!

Saturday, January 26, 2008

My very own blog

My sister-in-law started a list of 101 things to do in 1001 days and I thought it was a great idea. I have so many things that I need to get done and so many things that I need to try. It also got me thinking of other things that I could do. Also it has a realistic time frame of 2.75 years instead of just 1 year. So I started my very own blog. I will blog about my accomplishments. I also have other things that I would like to blog about that have to do more with me than just Kelsi and Cohen.

Kelsi with long hair

So I bought clip in hair extensions awhile ago, for fun, and Kelsi really wanted to try them on. She looks so cute. She says she looks like Hannah Montana. I really need to go buy that wig. She is going to be so gorgeous when she gets older. Chris and I are in trouble. I really want Chris and his friend Tony to act out the Bad Boys 2 scene when she has her first date. (You know the scene where his daughter has a date and Will Smith and Martin Lawrence give the boy crap.) It'll be hilarious. Hopefully it wont ruin the date. However boys are suppose to be afraid of the girls dad so he wont try anything right. She's going to be a heart breaker.

Tuesday, January 22, 2008

Low Platelets = Major Bruising

If someone, who didn't know Cohen had cancer, saw him they would probably think that we beat him. I have never seen so many bumps and bruises in my life. Sure, he usually has one or two big ones right on his forehead but not almost 105 everywhere on his little body. He has 40 on his head, 3 on his face, 13 on his arms, 2 on his stomach, 3 on his back, 40 on his legs, and 3 on his feet. Ridiculous huh? Any little bonk he would get a bruise and/or bump. He had his blood taken yesterday (every Monday and Thursday.) The doctor called with results and said his platelet count is dangerously low. That explains it. Normal is above 150 and they start giving transfusions when it gets below 19. Cohen was at 6... So we went to the emergency room and PCMC for him to receive the transfusion. Poor guy was throwing up on the way there and while we were there. We were able to go home at 11:00pm. He must have the stomach flu or something. He is doing much better today; which is really good that it hasn't turned into something worse. I'm glad that he's been able to fight off infection for the 3 months that he's had chemo.
His red blood cell count and white blood cell counts are still really low. They will do a transfusion of red blood cells tomorrow. We will continue giving him the neupogen shot until his white blood cell count is high enough for chemo. He is scheduled for chemo next Tuesday but they wont start him until his counts are high enough. I really hope they come up quick. I'd like to keep on schedule with everything.
After this next chemo they will do more scans and determine when they will do surgery. And after this next chemo he will then have his high dose chemo treatments and the stem cell transplants. I can't believe how much time has passed and how much he's already been through. He has been doing so well through all of this. I am so happy that he is able to act like a normal toddler.
Thank you so much for all of your prayers.

Wednesday, January 16, 2008

Kelsi's Dr.'s appointment

Kelsi is doing great!!! Her oxygen level is at 90 (which is perfect for a heart kid after surgery.) Her pacemaker was still set at 80 bpm but is only being used 81% of the time. So when she is really active her own heart rate is beating higher than 81. Her own heart rate beats in the 50's when the pacemaker is turned off. They said it isn't likely that her heart rate to come back up. (They think the sinus node was cut during surgery.) They turned the pacemaker down to 70 bpm to give her heart a chance to become stronger. They said so far the battery will last for 7 years. It could be up to 10 years with it turned down to 70 bpm.
I'm so glad that everything is going well with her. I couldn't have asked for a better outcome after surgery. :o)

Friday, January 11, 2008

We're home

Cohen was able to go home early yesterday. They gave him chemo at 8:00am and we left at 9:45am. I was nervous about nausea at home because the meds at the hospital can be given closer together. But he is doing great. He hasn't even acted like he's going to throw up.
I am so thankful for how well my little guy is doing. I hope its just as good on the inside as it is on the outside. It's amazing how these little kids fight back. Both of my little ones are very strong.
Cohen received red blood cells on Wednesday and on Thursday morning he was so wound up and acting like he just received some good medicine. It's crazy how much of a difference it makes him. He never is lazy but he doesn't play as hard. Kelsi included; she now has more energy than before surgery.
Please continue to pray for Cohen. We still have a long road ahead of us. I haven't heard about when surgery is but I hope and pray that she can remove most if not all of the tumor. And thank you so much for all of the prayers that have been said for Cohen. Without faith I think I would be lost.

P.S. Kelsi's appointment was rescheduled for this next Wednesday.

Wednesday, January 9, 2008

4th round of chemotherapy

Cohen started chemo yesterday. He will receive carboplatin for 2 days and etopiside for 3 days. They are going to start the chemo early tomorrow so we don't have to stay an extra day. Yay!!! Hopefully everything will work as planned. He hasn't thrown up this time. He is also eating and drinking just fine. And he's been really happy and playing most of the time. He is getting use to being here so he doesn't point at the door and cry anymore. All in all this is a good stay.
Thank you so much for all of your prayers. Here are a few pictures from this hospital stay.

Thursday, January 3, 2008

Cohen's treatment plan

I just realized that I never posted Cohen's treatment plan. Cohen will have 7 rounds of chemotherapy. Each three weeks apart anywhere from 2 to 5 days. They will do surgery to remove the tumor either before or after his 5th round of chemo. They collected his stem cells because for chemo rounds 6 & 7 they are going to give him high dose chemo and then give him stem cell transplants. Round 6 with be 7 days of chemo. He will then be given the stem cell transplant. Round 7 will be 6 days of chemo then the stem cell transplant. He will need to stay in the hospital 3 to 4 weeks each time. They will be done 6 weeks apart (from day one of chemo.) The high dose chemo kills off the bone marrow's ability to reproduce cells, and without giving him the stem cell transplants he would never reproduce cells. It takes an average of 12 days (each time) before the bone marrow recovers. He will receive blood and platelet transfusions during these rounds. 30 days after the 7th round of chemo they will do focal irradiation to the area of the tumor. That will be one to two weeks of daily therapy. After completion of all of the therapies he will be given cis-retinoic acid therapy orally for two weeks on and two weeks off for six months. They will also give him other medication to help his body's ability to fight the neuroblastoma. He will have checkups to monitor the neuroblastoma and then go from there.
Cohen starts round 4 on Tuesday. He will receive chemo for 3 days. Thanks again for all of your support and prayers.

Wednesday, January 2, 2008


I thought I'd update on Kelsi since it's been awhile. She is doing great. I checked her sats when Cohen was in the hospital. Her heart rate is at 80 (which is what the pacemaker is set at) and her oxygen level is 87. She has a doctors appointment to go to next week. I am interested to see how fast (or slow) her heart is beating at on its own.
She is being so much fun lately. She plays with Cohen so well. I've decided to take her to the hospital for Cohen's stuff now because she helps out so much. Besides when Cohen's sleeping we explore the hospital. I love spending time with her.

Tuesday, January 1, 2008

Stem cell collection

They collected Cohen's stem cells yesterday. They were able to get it all in one day! Yesterday was probably the hardest day yet. He was only sedated for about an hour for the catheter. They gave him ativan and then morphine to try and make him fall asleep but he was fighting it. He had to lay straight from 10:00- 7:00. Trying to make a toddler lay still for 9 hours is not easy. He was also very hungry but would not eat because he was laying down. They took the catheter out at 5:50 and had to put a lot of pressure on the site because it was done in the main artery in his leg. They normally only hold it for 15 minutes, but they held Cohen's for an hour and 10 minutes. Since it wouldn't stop bleeding they had to give him platelets and calcium. They sent him home at 8:00 last night. He is doing great today.

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