Thursday, December 27, 2007

Sorry I haven't updated for a week. I've been worn out. Cohen is doing great. He isn't so grumpy and he hasn't thrown up at all. He definitely handles the chemotherapy really well.
They are going to collect his stem cells really soon. We have been going to the hospital everyday (since Wednesday the 26th) for them to monitor his stem cells. They are thinking they will do the collection on Monday. He will have to get a catheter in his groin and stay pretty still during the collection. It could take anywhere from 1 to 5 days. He'll be in the hospital and probably be sedated the whole time.
I just wanted to tell everyone that I had the best Christmas ever. Kelsi was so happy and very sweet the whole day. Cohen was good until about 11:00 in the morning. He was grumpy the rest of the day; probably overwhelmed by all of the excitement. Chris and I had a nice relaxing day just watching the kids play with their toys. It was nice because we didn't have to think about anything medical with either of the kids. We were all just together the whole day. That doesn't happen that often. The best gift I received was from my sister-in-law Erin. She decorated the letters of faith with Cohen's picture. I will post a picture of it soon. It was very thoughtful.
Well, thank you so so much for all of your thoughts and prayers.

Thursday, December 20, 2007

Day 4 of chemo

I definitely spoke to soon about this being an easier stay. He was so grumpy on Tuesday and Wednesday. He didn't want to play, just watch tv on my lap in the rocking chair. My knees were very sore last night. Today Kelsi is here and he is much happier. It also gives me a break because she is a great distraction. Plus I have a little buddy to eat with. Cohen has a really good appetite. The doctors and nurses are very surprised by that because other kids usually don't have an appetite during chemo.
His MIBG scan came back good. The tumor is shrinking and there is no sign of it anywhere else in his body. The size of the tumor before chemo was 9.8 x 8 cm. It is now 6 x 5.2 cm. It has 'markedly diminished and is nearly resolved' from the aorta, great vessels, and the inferior vena cava. Yay!!! I am so pleased. Hopefully they can remove the majority of it with surgery and the rest will completely disappear with chemo.
The other chemo that he is receiving this time is Ifosfamide. It has the same common effects as the others. Nausea/vomiting, low blood counts, and hair loss. It's funny, I thought he'd be completely bald by now but he still has peach fuzz.
I just wanted to say thank you to everyone at Associated Food Stores and their vendors for their donations. Also thank you to the anonymous donations. That was so very kind of all of you. It will help us out tremendously. Words can't express our gratitude.
Thank you for your prayers. They still seem to be working. We wish everyone a very merry christmas and of course a happy new year. :o)

Monday, December 17, 2007

Change of plans

They decided to start chemo today. He also had a bone marrow biopsy and a ct scan today. Those tests came back negative. Yay!!! He will have the MIBG on Wednesday (scan of his tissue.) But he wont have the bone scan tomorrow because they don't have any of the dye,that they inject in him to make the cancer/tumor light up, anywhere in Utah. They will have to schedule that in January. That is the test that I've been waiting for because it showed cancer in his skull last time. I guess I will just have to continue waiting patiently.
He was so cute today. He was just smiling and playing all day long. The only time he cried was when it was time for bed. What a nice change. Hopefully this hospital stay will be much easier than last time.
They are going to try and get us out of here by Friday night. Yay!!! He'll receive chemo earlier then he'll just need to be hydrated and we can go. He is receiving two chemotherapys this time. One is Etopiside. This is one of the very first chemotherapies he had. I'm not sure what the other one is but they each run for one hour.
Again thank you so much for all of your support and prayers. We really do appreciate it.

Wednesday, December 12, 2007

Chemo next week

Cohen's white blood cell count is back up and higher than we've seen. Yay! His red blood cells and platelets were really low, so yesterday they gave him transfusions at Primary Childrens. Chris and Cohen were there for 5 hours and Cohen did really well.
Next week he'll have the 3 scans and start chemo. He needs to be sedated for the scans so they have to do them on 3 different days; Monday, Tuesday, and Wednesday. Chemo starts on Tuesday after the 2nd scan and will go for 5 days. If everything goes well he'll be able to go home on the 23rd at the earliest and probably the 24th at the latest. I really don't want to spend Christmas at the hospital. But if we have to we'll make the best of it.
Thank you so much for your prayers!

Sunday, December 9, 2007

I thought I'd update since it's been awhile. Nothing new. He is still grouchy but doing good. His counts are really low again but should come back up soon. That's pretty much it. Thank you for all of your prayers.

Friday, November 30, 2007


Sorry I didn't post anything last night; I was wiped out. Cohen is still really grumpy. He'll be happy for a little bit but when he gets grumpy nothing can calm him down. Poor guy; he is going through so much right now.
He didn't have to go home on iv fluids this time. He is still eating pretty well. Scrambled eggs are now a favorite. I just need to put in a lot of butter and milk to pack in the calories. I'm not sure how much weight he's lost because they weigh him in kilograms. I'm guessing at least 2lbs. Not too much because they aren't worried about it yet.
Cohen will have 3 tests done in 2-3 weeks (right before the next round of chemo) to check if the chemotherapy is working. He will have a bone scan, MIBG, and CT scan (all on different days.) All of the same ones he's had before. I hope the chemotherapy is working. Then they can schedule surgery and stay on the same plan. Hopefully the bone scan, the test that showed the tumor in his skull and cheek, will show no sign of the tumor there. Along with the other two scans. That way they'll have a better idea of where he's at.
The next round of chemo is scheduled for December 18th for 5 days (6 days total stay.) Keep your fingers crossed that his white blood cells come up on time and that everything goes as expected so we don't have to stay during Christmas.
Thank you for your prayers.

Thursday, November 29, 2007

Bad night and bad day.

Poor Cohen. He is so miserable. He's been throwing up since 3:00 in the morning. He's pretty much been crying the whole time too; other than when he's sleeping. The chemo is really making him nauseous. They are keeping up on his meds but it is only helping a little.
Here are the chemo treatments he is getting this time.
-Vincristine (just yesterday.) The nurse just pushed it in his iv over 5 min. The side effects are constipation, stomach pain, and hair loss.
-Doxorubicin (just yesterday.) It runs into the iv for 15 min. It is a red liquid so it makes his urine pink or red for 1-2 days. The side effects are nausea/vomiting, hair loss, low blood counts, and mouth sores.
-Cyclophosphamide (2 days.) It runs for 6 hours. The side effects are nausea/vomiting, loss of appetite, hair loss, and low blood counts.
Less common side effects of the Doxorubicin and Cyclophoshamide is heart damage. They said if anything it would be in the long run and could affect the squeeze of his heart. :o) We've been through heart defects with Kelsi so bring it on. JK. Hopefully it doesn't effect Cohen. We definitely don't need two heart transplants in the family.
I probably wont post another update until we get home tomorrow. He is not really letting me do much. I'm not sure when we are leaving either so plan on tomorrow evening.
Thanks everyone.
(This message was suppose to be posted on Wednesday Nov 28th but wouldn't. Sorry for the confusion.)

Tuesday, November 27, 2007


Dr. Wright said a few of the tests, that were taken in his first week, came back and are favorable. She thinks he has a better chance of living!!! :o) We are so happy! She said that they'd have a better idea if they knew for sure that it didn't travel to his skull and cheek bone. The only way they would know is if they did a biopsy of the skull and were able to get a piece of the tumor. She said that it is harder to locate because it isn't a mass. So for now they aren't going to do a biopsy. So the only thing that is putting him in the high risk category is his age. We got here at 11:00 this morning.
Cohen wasn't too happy to be here. He kept pointing at the door. They started him with iv fluids to get him really hydrated before they could start chemo. They started the chemo treatments at 9:00pm. He is receiving 3 today and 2 tomorrow. 6 1/2 total hours. It is dark so I will give names and side effects tomorrow.
Thank you so so much for all of your prayers!

Monday, November 26, 2007

Chemo tomorrow

Cohen is scheduled for chemo tomorrow at 11:00. His white blood cell count is 2200 (2.2,) platelets- 563, and red blood cells- 31.5. His red blood cell count dropped a little so I think they are going to give him a transfusion. He will have two days worth of chemo treatments and probably go home on Thursday.

He has been doing so well this past week. We actually took him over to my parents house just to get him out of the house. He had so much fun. He was eating all day and playing with my little brother.

My grandparents came up from Hurricane for Thanksgiving so we sent Kelsi home with them for the week. That way we wont have to worry about what to do with her during the day. She is having so much fun.

Anyway, I hope this round of chemo goes as well as the last one. :o) Thank you so much for your prayers.


So I've decided to do this blog on top of the carepages website. This will be easier for everyone to view and it's more fun for me. Some can't view this blog so I am going to post the exact same updates on So pick your favorite website. :o)
(I have links for Kelsi and Cohen's carepages.)

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