EVERYTHING LOOKS GREAT

Yay!!! The cancer still hasn't spread anywhere!!! In December the bone scan showed possible tumor on his cheek and skull but this time it didn't show up anywhere at all. We haven't received results back on the MIBG that was done today but most likely it will have the same results. The tumor has shrunk 1cm on each side. Dr. Wright said that it is normal for it not to shrink much after it already shrank a lot. His echo looked good. We are set for surgery next week. I am so relieved that everything still looks good. Dr. Wright said that Cohen is the best neuroblastoma patient that she has had in a long time. What a wonderful thing to hear from a doctor who deals with many cases! Thank you so so so so so so so much for keeping him in your prayers.

Kelsi had her doctors appointment today. Dr. Cowley was booked so she saw Dr. Tristani instead. He said that everything looks good and that it is ok for her to sat where she is. The Fontan that they did in September has a little hole that the mixed blood still flows through. He said that when her blood doesn't flow through there her sats are higher and when it does her sats are lower. She was sating between 81 and 85 today. He is going to talk with Dr. Cowley and see if they are going to close the hole in the cath lab or leave it open. The risk in closing it could put to much pressure in her lungs. So we will see. Thank you for keeping her in your prayers as well.

This week

We had so much fun at my grandparents house this weekend. Cohen was so happy to be there. Kelsi acted like she was at her second home and was really upset that we had to leave. It definitely was a much needed vacation. Thanks Grandma and Grandpa for having us!
Cohen's scans are this week. We will find out the results on Wednesday so I will update then. Keep your fingers crossed that it still hasn't spread and that it has shrank even more. Thank you so much for keeping him in your prayers!
Here is a picture of my cute Grandma Joy and the kids...

Small vacation for the kids

Kelsi, Cohen, and I are going to go visit my grandparents in St. George Thursday-Sunday. Cohen's counts are up and he is feeling much better so I decided to take him on a little vacation before he has surgery. We will leave after Cohen gets his blood taken tomorrow. It'll be nice for him to be out of the house and the hospital and in a new environment. Plus he'll be able to play outside a little since it is warmer down there. Unfortunately Chris wont be able to make it because he needs to work Thurs & Fri and then this weekend he is working on my parents basement. But we'll still have fun. Yay! I am so excited.

Scans and surgery

They've rescheduled everything. His CT scan and echocardiogram will be on Monday February 25th, bone scan will be Tuesday the 26th, MIBG and clinic visit will be on Wednesday the 27th, and surgery is on Tuesday March 4th. Cohen is doing much better. He still has a runny nose and dry cough but he's really active. His blood counts are finally back up so hopefully his body will be able to fight of whatever he has in time for surgery.

ROCK THE U

Erin, my sister-in-law, is participating in Rock the U. Rock the U is a year-long fundraiser to benefit the Huntsman Cancer Foundation. Their main event is a 26.2 hour dance marathon held in the spring (March 28th-29th) to raise money for cancer research. Each student who participates in the Rock the U dance marathon raises a minimum of $200 to donate to the Huntsman Cancer Foundation in an effort to find a cure for cancer. The idea is for the participants to simulate on a small scale the pain and fatigue cancer patients feel by dancing for 26.2 hours. Erin has set up a fundraising page where people can donate all year long (click here.) How neat would it be if they could soon find a better treatment plan for Neuroblastoma so the parents and child wouldn't have to hear that the success rate is only 1 out of 3. And not only Neuroblastoma but all cancers. It would be better if they actually found a cure for cancer! :o)

Much better day

The soonest cardiology could see Kelsi is February 27th; unless she gets worse. So we took her to the pediatrician and her saturation was at 96. Everything looked good. The doctor is unsure of why she was sating at 79. When I checked her the wave form was good an her heart rate was at 70, which is what the pacemaker is at, so I know it was accurate. We are going to keep the cardiologist appointment just to make sure everything is fine. We asked Cohen's nurse if the filter in his room would make it harder for her to breath and she said she would think so. Some of the nurses have a harder time. Hopefully that is just it. I wish I would have thought about it before I freaked out. If so we wont allow Kelsi to be there as much as she has been. :o( They'll miss each other so much. Great news, her heart rate was in the 80's when the doctor checked it!!! Yay the upper chambers are beating more on their own.
Cohen was able to come home today. The most recent cultures were negative. The bacteria that was found in the other one is also found on the skin. They think that it accidentally got mixed in his blood when they were taking it. He hasn't had a fever for almost 2 days and he's doing good. He's also eating really well again.
I don't think I ever wrote the results on his kidneys. They look perfectly fine. I need to call on Monday to see when his tests and scans are scheduled, and the surgery. We are back on track.
I am just so relieved that everything is ok right now. Thank you so much for keeping them in your prayers!!!

Not a good day...

Cohen's blood cultures came back gempositve. They aren't sure what it is other than it is in the strep family. They took some more cultures today to do some more tests. He'll need to be here for a bit longer.
Kelsi was here at the hospital with us today so I decided to check her oxygen level. She is sating at 79 and should be in the high 80s low 90s. I talked to the cardiology clinic nurse and she said that it shouldn't have dropped that low that fast (she was seen in mid-January and I think she was sating barely over 90.) She said to call tomorrow to see when they can fit her in. Seriously when it rains in our family it pours ...

Another day in ICS

He is feeling a little better. He started eating yesterday and some today. His fevers are still there but they aren't as high. Mainly in the 101s. He still would rather lay on me and watch tv but he'll play with his cars here and there. Here is a picture collage of this stay. He mostly slept on Sunday and Monday and was mad I was taking pictures Tuesday and today. He's slowly getting better one day at a time.

High fevers

Cohen's fever hasn't really gone down since he was admitted. It usually is above 102.3. Tylenol isn't seem to helping. On Saturday night it went to 104.something. We've been putting cold rags and ice bags on him but that doesn't really help either. The doctors aren't concerned that anything more is wrong. His heart rate, blood pressure, lungs, etc look good. They also said that they don't think his fever is due to the RSV because usually fevers spike in the beginning not the end. They take a blood culture everyday and they have all come back negative. They only thing they can pin it on is that his counts are low and sometimes cancer patients get fevers with low counts.
I love that he is so cuddly right now and am enjoying snuggling with him all day long but it's just not Cohen. He tried to eat a little today but threw it up and he wont drink at all. They've started him on a medicine that may increase his appetite. If he doesn't start eating soon they will place the tube in his nose.
Please say an extra special prayer for Cohen tonight. I hope he gets better soon.

PS. I asked his oncologist if she thinks the tumor will start to grow again since surgery will be delayed and she said no. :o)

RSV continues...

Cohen had a fever of 100.7 this morning so we watched it and called the Oncologist on-call after an hour. He had us come in to the ER to get a cbc, blood cultures, and fluids. His counts are really low so they admitted him since he wont be able to fight off whatever infection he has on his own. They assume it is from the RSV but wont be sure until his cultures come back. His fever keeps getting higher. He is currently at 102.4. They are giving him antibiotics to help his body fight off the infection and will need them for 48 hours. Poor guy, I feel so bad for him. He feels so lousy and doesn't want to be here. Hopefully he will get better soon and be able to go home.

I just wanted to let everyone know that this week (February 7th-14th) is CHD awareness week. Even though Cohen is the one going through the hardship right now please keep in mind that Kelsi has had her share and is doing wonderful! If you know of anyone with a child that has a congenital heart defect please send them to intermountainhealinghearts.org. Intermountain Healing Hearts is a wonderful support group that we are apart of. For more information about CHD awareness week please go to tchin.org/aware.

P.S. Kelsi had her pacemaker appointment (over the phone) on Friday and everything still looks great!

RSV = No sedation for scans

Since Cohen has RSV they are unable to sedate him for all of his scans next week. They wait until 2 weeks from the day they tested him for RSV to do sedation. That was my icing on the cake. I broke down after finding that out yesterday because I was so set on everything happening next week and then surgery the next week. I'm the type of person who likes/needs to know when everything is going to be, how it's going to be, and what it's going to be like in the future. Cancer is so unexpected and that has been one of the hardest things for me to deal with. I just worry that the longer we put things off the more the tumor can grow and the more they will have to (or can't) remove during surgery. Now everything has to be delayed and they aren't sure yet when everything is going to be rescheduled... At first I just thought they were being mean. It took me a minute to realize that they have him in their best interest and don't want to cause any harm to him. And if there is stuff in his lungs sedation could be dangerous for him... I will update as soon as I know the new schedule. Hopefully they can start this next Friday since that will be two weeks from the day we found out about the RSV (if he's better of course.) What a yucky virus!
He had his GFR (Kidney) test today. He did really well. It was done in Nuclear Medicine at the U instead of at PCMC. We had to hang out at the two hospitals between 9:00 and 1:30 and went to Nuclear Medince at 10, 11:15, and 1:15. They put in an iv so they could inject the liquid to take the scan, then they had to take blood an hour after and then two hours after that. Can you believe he kept his mask on almost the whole time! He only took it off to eat and we made sure we went in an area that no one really goes in. (The sky walk towards the Moran Eye Center has two chairs and nobody really goes down there.) They sent the results to the Oncology department but we wont know them until Monday. Keep your fingers crossed that everything looked good. :o)

The bug has spread/Scans and tests next week

Kelsi has a yucky cough and Chris and I have yucky colds. Hopefully we've caught them from Cohen so he doesn't get worse. Cohen isn't getting better but he isn't getting worse. He doesn't have a fever as often though. He has somewhat of his appetite back. I never did get TPN or IV fluids for him. I called the dietitian but she didn't call me back. He's been eating and drinking now so it's not completely needed. I'll talk to James from Oncology when he calls me today about Cohen's CBCs. He's only grumpy when he just wakes up from a nap or is ready for one; which seems to be more often now since he's not really sleeping during the night or at nap time.
Cohen has a kidney test tomorrow, cat scan and echocardiogram on Monday, hearing and bone scan on Tuesday, and MIBG (tissue) scan on Wednesday. I know he'll be sedated Monday through Wednesday but I'm not quite sure if he'll be sedated for the kidney test. They are checking his right kidney because the tumor has enclosed a little of it. Sometimes with Neuroblastoma they need to remove the kidney because the tumor has damaged it. The echocardiogram and hearing tests are being done because some of the chemotherapies they did can damage them. I haven't noticed anything different with his hearing. We've done our own little tests at home. Dr. Fluchell said he noticed a murmur when he was listening to Cohen's heart... I hope everything looks good on all of the tests. I will update on each test as we find out the results.
Thank you so much for all of your prayers!

Cohen's home

Yesterday Cohen's cough got a little gunkier and he had a fever of 101.3. He was very sleepy but was still up and playing most of the day. He's such a trooper! He had a low fever last night and this morning so they felt comfortable enough to send him home. They took blood to do cultures on and will find out later tonight if he has a bacteria. If so he'll have to go back in.
He's been sleeping most of the day and hasn't eaten a thing. If he doesn't eat by tomorrow afternoon I'm going to see if he can be on IV fluids at home. I don't want him to loose any weight. Also he needs to get better before his scans and surgery this month so we don't have to postpone anything.

RSV

Cohen has RSV... They said he's doing really well considering he has RSV. They think it wont get worse and that he'll still be able to go home tomorrow. I'm a little nervous because it could turn into pneumonia especially with his blood counts dropping soon. We just need to be extra careful about washing our hands and the toys he plays with.

Hooray For Chemo

Cohen's platelets are up so he's able to go in for chemo today. He'll receive chemo for two days and probably go home on Sunday.
Cohen finally caught a bug yesterday. He's had a low fever, it never went above 100, a yucky runny nose and a dry cough. He's still active so it's not bringing him down. They are going to check him today to see if he has any infection, bacteria, or a virus. Hopefully it's jut a cold.
I'm excited that we are more than half way done with Cohen's treatments. I can't believe he is already on his 5th treatment. Time has gone by so fast. Next month will be a busy month with 3 scans, an echocardiogram, a hearing test, pre-surgery lab work, and surgery. Hopefully everything looks good and goes well.
Thank you for all of your thoughts and prayers.