Sunday, December 28, 2008

HAPPY HOLIDAYS!!!

We have definitely been busy this holiday season. We went on the Polar Express with Make-A-Wish (yes both of my kids are now Make-A-Wish kids; I will post on that later) where they road on the 'Polar Express' train to the North Pole to meet Santa, tell him what they want for Christmas and receive a present.



With all of the fun snow outside they bundled up to play in the snow. Kelsi made a snowman (just a pile of snow it was so cute but I didn't have my camera) and Cohen played until he fell face first in snow. He was done after that.
We went to the Hope Kids Christmas party (Hope Kids is a support community for children with life-threatening medical conditions. They put on events and activities for the children.) They had a lot of fun. Kelsi played with her very close friend who also has a heart defect. They saw, sat, and received another gift from Santa.We saw many familiar faces from Intermountain Healing Hearts and some of the mom's of children with cancer that I've come to know. It was nice for me to be around so many families who are in the same shoes as us (both cancer and heart) and some I've known for a little over a year now. Many of them I consider my second family. It's nice to have a support group of people who know exactly what you are going through. I now have many. ☺
We celebrated a birthday and had family over for a birthday dinner. I was extremely nervous to have Cohen around extended family for the first time since his diagnosis. Luckily no one was sick and Cohen seems to be healthy still. The kids had so much fun with cousins and my cousin's daughter. It was nice to see Cohen playing with children his age.
Christmas Eve we made cookies for Santa. That was fun. Cohen decided he'd rather eat the yellow frosting than frost the cookies.Christmas Day was so much fun! Cohen got off to a rocky onery start but after the second present he was so excited. Kelsi and Cohen received a lot of fun gifts from Santa, us, grandparents, Aunts, Uncles, and cousins.I hope you all have had a Merry Christmas. Thank you so much for all that you have done for Kelsi, Cohen, Chris, and me. We appreciate all of your love and support. This is definitely the season for me to reflect on that. I'm so thankful for everything we been blessed with. Even though we've had our share of hardships they've definitely been blessings in disguise. We've learned to appreciate others and all that we have, love with our whole heart, never give up, have faith, and hope with all of our hearts. (There are many many more but it's late and I can no longer think ☺)
Happy Holidays
~Ashley, Chris, Kelsi, and Cohen.

Sunday, November 23, 2008

Cohen is finished with the study drug

(I started writing this post but never finished it... So here it is almost 4 weeks later. It's still not finished but I decided to post it anyways.)
Cohen finished his last treatment of the study drug on November 14th. I'm so relieved that he is finally done! He is done! Wow that is so weird to say but I'm so glad to be saying it. He has come such a long way in a year and a month. I'm still just so baffled to how far he has come. Just a year ago we were told that Cohen had a cancerous tumor the size of 2 grapefruits. That he was in stage 3 which is high risk (stage 4 is the highest.) That only 30% of kids with neuroblastoma stage 3 survive. To be in that 30% he has to be in remission for 5 years. I'm just so thankful that he's been in remission for 4 months! Now we just play the waiting game. He will have his next scan in the first of January and then every 3 months after that.
Thank you so much for your support, thoughts, and prayers!!!

Tuesday, November 18, 2008

Costume contest

I just wanted to thank everyone for voting for Cohen. Unfortunately he didn't win 1st place but thanks to all of you he won 2nd place. They gave us tickets to Disney on Ice, a DVD, and a CD. We couldn't take Cohen to it but Kelsi had a lot of fun.
Cohen just finished his last treatment of the study drug last week. I will post more about that tonight.
Thanks again!

Sunday, November 16, 2008

Kelsi's 6th birthday

Yesterday Kelsi celebrated her 6th birthday. She started out by opening her birthday presents. Her daddy made her pancakes for breakfast and then we got ready for the day. We went to see Madagascar 2, went to lunch, and got some ice cream with one of her friends. She had a really good birthday. Here are a few of the many pictures I took yesterday.\
I can't believe it's already been 6 years since we started this journey with her. She is doing so well now and I am so thankful with all of the many blessings she's received. Thank you for the many prayers and good vibes you've sent her way. We really appreciate it!

Thursday, November 6, 2008

Vote for Cohen in a costume contest!!!

I entered Cohen in the 97.1 zht Jack-O-Cuties costume contest. He is #170. Please please vote for him. Tell everybody you know to vote for him. We will win $500 and could really use the money for Christmas. Here is the link to the website http://www.971zht.com/pages/halloween/cuties08/. He is in the 0-2 year old category.
Here is the picture you will be looking for.
Thank you so much!!!

Monday, November 3, 2008

Best Halloween Ever!!!

I can honestly say that this was the best Halloween we've ever had. Both kids were home, nothing major was wrong, they were happy, and they had the cutest costumes!!! Kelsi was an Asian princessand Cohen was a trainWe even went trick or treating like a normal family! We started out in a big group but the older kids were so excited they didn't want to wait for us. So Chris, Cohen, and I made the loop around our house. Cohen was a pro by the third house. He'd start running for the door as soon as we were on they're driveway. I'd knock and then he'd knock. He said trick or treat a few times. His costume was definitely a hit. It would've been fun to have Kelsi with us but she definitely hit more houses in the same amount of time and I think she had more fun with her cousins and her uncle than she would've with us. Here is a picture of the kids before we left the houseI felt so blessed to be able to share this holiday with my family the way we did. Especially with the way Cohen's been feeling. He has thrown up about 3 times a day everyday since the Sunday before Halloween. We were concerned and so were the doctors so they admitted him on Wednesday and nothing came back positive so he was discharged on Thursday. I call it lucky!!! I'll post more about that soon. I have so many things that I need to blog about but haven't. I promise I will do it soon.

Sunday, October 26, 2008

A year ago today...

Cohen was diagnosed a year today... Crazy huh? I can't believe it's already been a year. He has been through so much in just one year. 7 cycles of chemotherapy, resection of his tumor, 2 stem cell transplants, 6 rounds of total body irradiation, 4 rounds of focal radiation, and the study- 3 cycles of the CH 14.18 (aka antibody or study drug,) 2 cycles of IL-2, and 2 cycles of IL-2 and the antibody. He just completed his 4th cycle of the study and has one more the week of November 10th. Then he'll be done!!!!!!!!!!!
I'm so proud of our little boy. He has been such a trooper through all of this. He is normally really cooperative with the nurses and doctors and is rarely in a bad mood. Although he is famous for saying no to all of them. One of the Nurse Practitioners makes sure she asks the right question just so she'll get a yes.
I am so thankful and blessed for all of the wonderful people we've met along the way. You all have made a huge impact on our lives and we appreciate all that you do for Cohen and the rest of us.
Also thank you so much for keeping him in your prayers. I truly believe in the power of prayer and know that your prayers have done so much for Cohen.

Cycle 4 of the study

Cohen was in the hospital this month from October 6th-10th then again October 13th-19th . This month he received IL-2 the first week; which he handled really well; and IL-2 and the antibody the second week. He had a really rough time the second week. It was harder on him this time than in August. He normally gets Dilaudid for pain because he gets really itchy and hives on morphine but Dilaudid isn't compatible with the other two meds. So they gave him morphine again because he did alright with it in August. He didn't do so well this time; his heart rate was in the 190's, he was bright red, itchy, had hives, etc. So they decided to take him off the morphine and put in an iv in his foot (later moved to his hand) with dilaudid. They said if taking him off of the morphine doesn't remove all of those symptoms than they'd consider taking him off of the study. We were ok with their decision either way. But luckily it was the morphine and he did much better. He finished the meds on Friday but still had high fevers and was nauseous so they kept him until Sunday. One of his cultures came back positive so they put him on iv meds at home for 7 days. He is back to his normal self again, as of Thursday, playing around and eating again.

Monday, September 29, 2008

Our brave little man

Cohen has been doing really well since he came home from the hospital 2 Saturday's ago. He's still on TPN and lipids but he's eating more food and drinking on his own. The last hospital stay wasn't too rough on him. The first days were hard but the last weren't too bad. He didn't seem to be in too much pain after the antibody was done for the day. He only needed oxygen the first night and came home a day earlier than the other times. He will start the IL2 next week and then he'll have the combo of the IL2 and the antibody the week of the 13th (that's the one that hit him hard in August.)
Here are a couple of picture from this last hospital stay. He absolutely loves his elmo and look at that hair.Thank you so much for all of your thoughts and prayers.

Monday, September 15, 2008

Sorry for the slow postings

I just haven't been myself lately. We're going through so much it's been kind of hard on me. :o)
Cohen is doing great. Everything went really well on Thursday. He went in at 9:30 and came out an hour later. We were out of the hospital by 2:30. The site bled a little more than the last two times but nothing to worry about. He just slept the rest of the afternoon and was playing around by dinner. I love how he just gets back up and acts like a normal kid. It was really hard last month when he wasn't himself.
He was suppose to start the antibody therapy today (painful study drug) but the medicine was stored wrong so it went bad. Rather than staying at the hospital for no reason they sent him home and he will start tomorrow. It'll run for 4 days like always and he'll go home once he's recovered.
Thank you so much for all of your thoughts, prayers, and comments. We appreciate it.

Tuesday, September 9, 2008

Surgery will now be on Thursday

Saturday, September 6, 2008

Unfortunate Surgery...

(Chris here) Cohen's central line sprung a leak last night when we were flushing it so we had to rush him to Primary's. They repaired the line but one of the lumen's clotted. They put some TPA in the line to try and break it up. After hours of waiting it didn't work. So they sent us home and told us to contact Home Health to try again that afternoon. The nurse practioner called us in the morning and had us try to flush the line. After that didn't work she had us come back up to the hospital. They ended up repairing it again to see if the glue they used may have clogged it. While repairing it they figured out the glue was not the problem. They figured it was just super clotted. So guess what..... Surgery to replace the line sometime on Monday.

Update: Surgery will now be on Tuesday.

Sunday, August 31, 2008

Kelsi started Kindergarten

Kelsi started Kindergarten last Tuesday. She loved it. She has two friends in her class from daycare and has made a few more. She said she wants to make friends with all of the kids in her class. I'm so glad that she wants to make new friends and isn't being shy about it. I'm excited for all of the new things she will learn this year. I know she'll catch onto reading quickly. I can't believe how fast the time has passed. Here are a couple more pictures from last week.

Monday, August 25, 2008

Poor little Cohen

Last week was pretty hard on Cohen. He felt yucky as soon as the medicines started. He had the same symptoms as last month with the study drug; he was in pain, needed oxygen, retained fluid, slept most of the time, and was grumpy. But with the 2 drugs together he had a few more symptoms; he got a lot welts (that would go away after benedrul,) had fevers, and felt really sick. He retained more fluid this time; it went into his lungs a couple times so they gave him lasix (a diuretic) which would help him pee. They sent him home on Saturday but he still hasn't fully recovered. He's just doesn't feel good; he's laying around and watching tv most of the time. He isn't really eating so we're going to start TPN and lipids again. I hate seeing him this way and going through so much. Hopefully he'll bounce back soon. Thank you for keeping him in your prayers!

Kelsi starts Kindergarten tomorrow. I will post about her first day of school then.

Monday, August 18, 2008

I think I spoke to soon when I said Cohen was going to be able to go home on Friday. Thursday night he spiked a fever, threw up, and had diarrhea. Friday and Saturday he seemed to be feeling better so they sent him home. He threw up again Sunday evening and has had a really runny nose. He was admitted today to receive the study drug (CH 14.18) and the IL-2 (Aldesleukin- drug he received last week.) He's still not feeling too well and in pain. He'll be here at least until Friday; it just depends on how well he does.
I've been meaning to post some pictures of his hair coming in. It's coming in the same color as it was. He looks so cute with his hair.

Thursday, August 14, 2008

Hospital stay

I've been a slacker. Cohen has been in the hospital since Monday; I haven't posted because I didn't bring my laptop up. :o) He is receiving a drug called Aldesleukin (part of the study) which helps a certain type of white cells kill cancer cells. He hasn't had a reaction to the drug and is doing really well. The plan is for him to go home tomorrow, spend the weekend at home, and then be admitted on Monday. He'll start the CH 14.18 (yucky study drug) along with the Aldesleukin for 4 days and go home either Friday or Saturday.
Cohen is doing really well and his head is getting fuzzier everyday. The fuzz is getting long enough that it lays down rather than sticking up! I guess it's not so much fuzz anymore its hair. It's so much fun to see his hair grow. I will post pictures soon.

Wednesday, August 6, 2008

Kelsi's check up

Kelsi had a cardiology appointment today and it went really well. She is doing great and everything looks great! Her oxygen saturation is still in the mid to low 90's. Her heart is still very dependent on her pacemaker; it's pacing her 94% of the time. Her normal heart rate is in the low 40's and the pacemaker is still set at 70. The pacemaker has 6 1/2 yrs before the battery will need to be replaced. It's so nice to hear good news again with her. She is back to 6 month appointments (like before surgery.) It took almost a year to get back to normal but we'll take it.
It's so nice to finally have both of my kids at a standstill with their diagnosis's.

I'm a little slow posting this but I wanted to let those of you who aren't involved in my heart support group (Intermountain Healing Hearts) know that we are having a fundraiser. The Olympic Gold Medal Mile Fun Run/Walk is on Saturday September 6th at the Riverview Park in Provo; see the attached flyer to print and sign up. It's going to be a lot of fun and it's a great way to help support families of children with congenital heart defects.

Sunday, July 27, 2008

Update on the study

The study drug is a pretty nasty drug. The antibodies are attracted to the nerves so that's where the pain is. When it started on Monday Cohen was in so much pain. He was on continous PCA of Dilaudid plus a push button. We kept pushing the button but it didn't seem to help. The pain med made him really itchy so they gave him an antihistamine. Then he started throwing up. Poor guy. So they kept upping the pain med, gave him 2 anti-nausea medicines, and 2 antihistamines. He was so drugged up and was still in pain. The study drug also made his heart rate sky rocket. His heart rate has been around the 80s and 90s and went up to the 160s. The last hour of the infusion his heart rate was in the 190s. Since he was on so many medications his oxygen saturation dropped and he needed oxygen. The infusion ran for 8 hours. The pain was better two hours after that but Cohen still felt yucky. It was a hard first day and I felt soooooooo bad for Cohen. I though maybe the study wasn't the best idea but we'd stick it out at least until the next round to see if it'll get better.
Tuesday- He mainly slept through it. They kept the same drugs going and had a good continuous amount of the Dilaudid; we kept pushing the button for a little more just to keep him comfortable. He spiked a fever and was still on oxygen but it was just the blow by. His heart rate was usually lower than 160.
Wednesday & Thursday- was even better. They didn't do anything different but having the consistancy of the medications made a difference from Monday. He still had fevers and was on the blow by oxygen so he couldn't go home on Friday.
Friday was a good recovery day. He came off of the oxygen and all meds. His heart rate went back down to normal and his fever was gone. So he went home on Saturday.
We're going to stick with the study. It should be a really good thing and worth it. Besides they were able to manage his pain and it's only 4 days every month for 5 months. We still have a really good feeling about it.

Monday, July 21, 2008

More about the study

Cohen was admitted today to receive the study drug. He will be here until Friday morning as long as everything goes great. He's started the neupogen shot again (the one that enhances the production of white blood cells.) He will also be on the retinoic acid (accutane.) The study drug is called CH 14.18: it's a monoclonal antibody made from human and mouse cells. It specifically targets a substance called GD2 that is expressed on the surface of some cancer cells, including neuroblastoma cells. The study drug can be very painful that's why he'll need to be in the hospital while he's getting it. He'll be on a PCA so hopefully we can manage his pain. I will update this weekend to let you know how it went.

Wednesday, July 16, 2008

Study

Cohen was selected to participate in the study. He starts on Friday. I'm not sure off all of the details so I will post when I know more.

Wednesday, July 9, 2008

Cohen is in REMISSION!!!

Can you believe it? We are soooo excited! This is the best news we've received about him since October 26th. His MIBG and CT scans show no evidence of disease. Today he had to redo the bone marrow aspirate/biopsy because the lab threw his out so that test isn't back yet. He has never had it in his bone marrow so they're pretty positive that it will come back negative. YAY!!! I really don't know what to say.
We will find out if he is picked for the study soon but I'm not sure when because they had to redo that test. I'll keep you posted.
THANK YOU SO SO SO (many so's) MUCH for praying for Cohen. He (and we) couldn't have done it without your support! :o)

Sunday, July 6, 2008

Fuzzy head

Cohen's head is starting to get fuzzy!!! His hair is starting to grow back and the next part of his treatment wont effect his hair growth. We are so excited! He is absolutely adorable with his bald head but having hair is such a big step after what he's been threw. I'm so curious as to how it will grow back. It could be curly, straight, blond, brown, etc. I'm kind of hoping for curly hair. I think it would look so cute. Here is a picture of Cohen before we found out about his tumor and after we cut his hair.

Monday, June 30, 2008

Scans

Cohen will have scans and others tests to see if the cancer is gone and if he will be entered into the study. Here is our schedule:
Tuesday July 1st- Clinic visit-blood for study, Bone marrow aspirate/biopsy
Wednesday July 2nd- MIBG Scan and maybe an Echo (I don't think he'll have to have another one.)
Monday July 7th- CT Scan
Thursday July 10th- Clinic visit- blood for study

I think we will find out if he is chosen for the study on Friday July 11th and start the following Monday.

Tuesday, June 24, 2008

He's home

Cohen was able to come home on Sunday. He is doing much better but they're not sure what's wrong. However the cardiologists aren't concerned. The BMT doctors said that every few years they get a kid with neuroblastoma whose heart rate does this with no explanation (but it happens during the 2nd transplant) and their heart rate went back to normal. So.... We will just watch him. Please keep him in your prayers and hope that nothing is wrong and/or that it doesn't get worse. Thanks!

Saturday, June 21, 2008

Radiation is over and he's back in the hospital...

He is done with radiation and he did really well through it. But... His heart rate started slowly dropping on Wednesday. It was in the 80's, then Thursday it was in the high 60's so I called and the docs said it could be because he's may be dehydrated. So we gave him iv fluids overnight and checked him again the next morning. His heart rate was 54 bpm. Not fun when I've already experienced low heart rate with Kelsi and now she has a pacemaker. So of course they wanted him to come in. They immediately took blood cultures and hooked him up to fluids. He went down to cardiology for an echo and ekg. Everything looked fine. His heart rate even went back up to the 80's. The cardiologist nurse practioner (the one that checks Kelsi's pacemaker!) came and checked him out. She said everything seemed to be fine but they wanted to hook him up to the 24 hr ekg machine. They admitted him so they could monitor him for a bit and started him on antibiotics just in case. His heart rate is irregular. It is anywhere from the high 60's to 110. His blood pressure is a little lower than normal but they aren't concerned about that because other kids with neuroblastoma experience the same thing. His preliminary cultures came back negative. So we will just wait and see. I don't think I ever mentioned that they have heard a slight murmur every since he was first diagnosed but every test they've done on his heart has come back normal.
(He kept the clear bandages on all week! No tattoo's for my little man.)

Thursday, June 12, 2008

Focal Radiation and then maybe a study?

The kids are doing great! Kelsi's oxygen saturation has been pretty consistent at 96. Cohen is off all TPN, lipids, and IV fluids because he is eating and drinking enough! Like I said before it usually takes 6 months after the 2nd transplant for other kids with neuroblastoma to start eating. He's eating normal after 1 month!!! I'm so proud of him. He had his radiation simulation yesterday and they mapped out where they will do the radiation. They are only going to do it on the spot where his tumor was since the tumor never metastasized. He has permanent marker markings on the right side of his belly. They are covered with the tagederm (clear band aid.) He has to leave them on until next Thursday or they may have to tattoo him. He'd have four really small dots forever so hopefully he'll be good at leaving his tummy alone! He starts radiation on Monday and will have it once a day through Thursday.
He then will have his scans the first and second weeks in July. If everything looks good he'll be entered in a study where he'll be randomly chosen to do it. The study is pretty neat they'll infuse monoclonal antibodies into him. These are special molecules that seek out and attach to cancerous cells. Sometimes, these antibodies can stimulate the child’s immune system to fight the cancer more effectively. He'll also receive cis-retinoic acid (aka Isotretinoin or Accutane.) This helps the cells mature. The study goes for 5 months and he'll be in the hospital 1 week every 4 weeks. If he doesn't get picked for the study he will just receive the cis-retonic acid for 6 months and not have to stay in the hospital. We'll know which one he'll be chosen for by the 3rd week in July.
Thank you so much for keeping my two cute kids in your prayers! Kelsi and Cohen have done so well thanks to all of you! Chris and I couldn't do it without your support. :o)

Thursday, May 22, 2008

Bittersweet


Cohen did get to come home yesterday and he is loving every minute of it. He's actually eating a little more. I'm so glad to have him home and to see Kelsi and Chris more often.
While we were waiting to be discharged I just thought about all of the wonderful people that we've met and that have cared for Cohen. Not very many of Cohen's nurses were there to say goodbye to yesterday. I was a little sad about that but glad that I got to say goodbye to those who were. I'm going to miss seeing them every three weeks. The nurses and techs in the ICS Unit are truly amazing people. Words can't even express how amazing they are. I was able to get close to a handful of them and they've touched my life so much. Thank you! I am going to miss all of you so much. Even though it'd be nice to see you guys again I really hope we never have to! :o) We will come to visit and even during the night shift. You are more than welcome to give my blog address to anyone that wants it; nurses, techs, patient families, etc. Again thank you so so much for all that you've done for Cohen, Kelsi, Chris, and me.
Wow can you believe that he's done with that part of his treatment plan? Time has flown by so fast but yet it feels like we've been doing this for a really long time. All he has left is radiation and oral medication. I'm so excited but so scared. I'm not sure when he will have his scans but they will let us know if his treatment has worked or not.

Tuesday, May 20, 2008

Home tomorrow?

Cohen's anc just shot up. It was 200 Sunday, 1000 Monday, and 1600 today!!! From what we can see his mouth sores are gone and he hasn't had any fevers. He is doing so well. They've stopped his pain meds and the antibiotics today. He is barely eating anything so he will go home on TPN and lipids. He engrafted on day +12 (same day as last time.) I thought it would at least be one more week. We're excited to go home.

Saturday, May 17, 2008

Sister Therapy


Kelsi came up to the hospital yesterday and it made Cohen's day. He hasn't played for more than 10 min a day since last Friday. They played all day long! He didn't even take a nap. He also ate for the first time in a week too. It wasn't much but at least we know his mouth isn't hurting him as much as it was. Cohen doesn't have an infection either. They said his fevers are probably just from the mouth sores. Yay!!! This time has been harder on him but it's getting better and we haven't had to really worry about anything. His white blood cell count is at 300 today. ANC is still 0 but they think it will shoot up next week.
Kelsi had her follow-up appt with cardiology yesterday. Her sats were at 96!!!! I don't think she's ever been that high. She is doing so good. I couldn't be more pleased with how she is doing.
Thank you so so much for keeping them (and us) in your prayers. We really do appreciate them and know that things couldn't go this well without them.
(The picture from a few weeks ago but I had to post it cause it shows how much they love to be around each other.)

Wednesday, May 14, 2008

Mouth sores

It's official (well it has been for a few days) he definitely has mouth sores; and a lot of them. I was able to see about 4 on the inside of his lips and one the tip of his tongue. I'm sure they are all over his mouth. We also think that they go pretty far down his GI track because he isn't really swallowing and he coughed up bloody mucous yesterday when we did his mouth care. He is so miserable. I feel so bad for him and all I can do is push the PCA (morphine drip but he is allergic to morphine so it's hydromorphone.)
The burns are more from the radiation. Where they taped the oxygen mask on his face and put the lead stickers his skin couldn't breath while he was having radiation. Luckily it doesn't seem to bother him too much.
They tested him for RSV since he has a runny nose and has had it twice already. It was negative!!! Not that we're out of the woods yet but it was pleasing to hear that. He's had fevers here and there so they sent cultures yesterday. The results aren't back yet.
His white blood cell count is at .1 today so the stem cell transplant worked. It just takes time for it to come back up.
Please keep our little man in your prayers.

Sunday, May 11, 2008

Poor Cohen

Cohen isn't feeling too well. He seems to be in pain . We think he has mouth sores but he wont show us. He wont eat and isn't too happy with his mouth care. They put him on a pain medication drip to help him feel better. Also he was a little nauseous yesterday. He has burns from where tape or stickers have been. He already has pretty sensitive skin but the chemo made it really sensitive. We are just trying to make him comfortable and happy.

Saturday, May 10, 2008

Pictures of Kelsi from the other day

She is still doing really well. They changed her pacemaker rate a little so that when she is active it will sense it and make her heart beat at a faster pace. Hopefully she wont get as tired and will have more energy from this. Also they wanted to monitor her heart for another 24 hours so they put her on a portable ekg that we will mail in (or drop by since we are here with Cohen.) She was not to happy about that. The one thing that everyone kept saying was how pretty her face is. I think so too. Kelsi is very beautiful. I really do have 2 amazing kids who seem to get through everything. They are so strong!

Thursday, May 8, 2008

She is doing great!

Everything went really well. The pressures look great. She is sating at 91 (oxygen saturation.) I'm so proud of her she's such a trooper. Thank you all so much for your thoughts and prayers!

Update 1

They took her to the cath lab about 4:45. She was loopy from the versed and happy to go with them. She was being a little silly and singing Hannah Montana and High School Musical songs. Dr. Cowley said that he doesn't expect any problems with them closing the hole. They will check the pressure in the pulmonary artery before and after. And then follow up to check it again. They can always remove the thing they are putting in to close the hole. I asked him if it didn't work if it would bump up when she would need the transplant; he said that is still far down the road. Whew!!! I'll post again when she is done. It will take about 3 hours.

Delayed

They had a child with an emergency so they pushed Kelsi's procedure back til 5:00. They want to monitor her for 24 hours so she will stay the night in the post-op unit. Unfortunately I will have 2 kids in the hospital tonight...

Wednesday, May 7, 2008

Kelsi

Kelsi will have her cath lab procedure tomorrow at 2:30pm.

Stem cell transplant

Cohen had his stem cell transplant today. He did really well and slept through the whole thing again. Here is a picture of the dry ice smoke that I talked about last time.Here is a picture of the stem cells. They were more red this time.Happy 2nd BMT Birthday Cohen!!!

Monday, May 5, 2008

No more chemo!

Cohen received his last treatment of chemo today. All he has left is the stem cell transplant tomorrow and in 4 weeks 4 days of radiation, then he'll start the oral medication for 6 months. Wow the time has flown by so fast. It's almost been 6 1/2 months since Cohen was diagnosed.
Here is a picture of his last treatment of chemo. It is called Melphalan.Cohen did really well with the radiation. They made lung shields and drew on his body where his lungs are. Here are two pictures of that.
Cohen is doing so well. Hopefully this stay goes as well if not better than the last one. We are hoping for no RSV or other infection!

Thursday, May 1, 2008

Everything is going good. He hasn't had a problem with the sedation and isn't fighting it either. He does wake up pretty grumpy but that's expected. He hasn't been nauseous yet but they are keeping up on his medicines. He's not happy that he is here but he has all of his favorite toys to keep him busy. Sorry for my little breakdown the other day. For some reason I've been having more and more lately.
Thanks again for all of your thoughts and prayers.

I'm trying to find a new blogger template that I really like. I want it to have more room. If anyone knows of a good website let me know. Thanks.

Tuesday, April 29, 2008

Ready for tomorrow?

Well not really. I'm so worried that something might go wrong. The docs told me that there is more risk to this one (just will infections I think.) Grrr. Can't they just stop telling me that. Don't they know that we already know that there are risks. He did say that the outcome totally outweighs the risks though. At least he's optimistic! :o) I'm not ready for radiation. I still feel like I don't know much about it but when it comes down to asking questions I don't have any. I'm worried that he'll stop breathing again and that it could become a problem. Anyways.... Here is the week and half ahead.
Wed. April 30th Day -7
6:00am- Admit
8:30am- TBI (total body irradiation) We will take a shuttle from Primary's to Huntsman each time he has TBI. They said it should only take an hour.
3:30pm- TBI
Thurs. May 1st Day -6
7:30am- TBI
3:30pm- TBI
Friday. May 2nd Day -5
7:30am- TBI
3:30pm- TBI
Saturday May 3rd Day -4
Chemotherapy. I can't remember what it is called but it starts with an M and goes for 1/2 hour
Sunday May 4th Day-3
Chemotherapy
Monday May 5th Day -2
Chemotherapy
Tuesday May 6th Day -1
Day of rest
Wednesday May 7th Day 0
Stem cell transplant
Thursday May 8th- Kelsi's cath lab procedure.

I packed two big suitcases full of Cohen's clothes, toys, blankets, books, and movies. The expected stay is 3-4 weeks again. I'll post tomorrow.
Thank you so much for all of your thoughts and prayers.

Tuesday, April 22, 2008

Total body irradiation

Cohen had his radiation simulation yesterday and we met with the radiation Doctors on Friday. They sedated him and took measurements. He needs to be still during radiation so they'll have to sedate him every time. He kept fighting the medicine that they gave him so they had to give him more and more. Finally he was out and stopped breathing... They were able to pump air back into his lungs and get him to breath on his own again and get the procedure done. He'll have radiation twice a day on the 30th, 1st, and 2nd. And then once a day for 4 days 4 weeks after transplant. He's going to be sedated a lot. It seems like he fights the sedation more each time he has it. :o( I'm so worried that something could go wrong. Also the thought of radiation scares me. I don't know why other than its new and he's never been through it before. I don't know; we'll see. He goes in on April 30th. 3 days of irradiation twice a day, 3 days of chemotherapy, day of rest, then his stem cell transplant.

Wednesday, April 16, 2008

Cohen is just amazing

So far so good. He has been eating a little and staying healthy. The BMT doctors and nurses are so impressed that he is even eating and playing. They said after the first transplant the kiddos usually just lay around the house. Cohen has been up dancing, acting crazy, and playing with his sister. She really does help him stay normal. They have so much fun together and she encourages him to be crazy. As for eating they said that it takes 6 months after treatment for other neuroblastoma kiddos to even start because of where the tumor is located and all of the stuff they go through. Most of them have the NG tube in. Cohen is soooooooo amazing. He has defied most of their expectations. No mouth sores, eats ok, maintains weight, plays around, shorter stays, minimal nausea, only one extra hospital stay. He is so cooperative with the nurses and his meds. He is so sweet and fun even though he is going through so much. He is definitely my little hero. :o) Hopefully everything continues to go well. Unless he is chosen for a study or gets sick this next stay should be his last. Crazy huh? The 2 weeks he has radiation will be outpatient. His last chemotherapy will be on May 6th. Wow! What an experience this has been. I can't believe the treatment is almost over (even though we still have 2 1/2 months to go.) It has gone by so fast but it seems like he's had this for a long time.
Thank you so much for all of your prayers. They mean so much to us. They've really helped along the way.

Friday, April 11, 2008

Happy Birthday Cohen!!!

Today is Cohen's 2nd birthday!!!

Wednesday, April 9, 2008

Going Home!

We are so excited that Cohen gets to come home today! He's been here for 20 days. A few days shy of the expected 3 or 4 weeks. His anc is 1500 this morning and he is still negative for infections/viruses. I am so pleased with how well he did. The only virus he got was RSV and it didn't get that bad. They said for sure he'd get mouth sores this time but he didn't. His appetite isn't fully back but enough where he'll only need TPN & Lipids for 12 hours a day at home. He comes back on May 2nd for the next transplant. They did schedule his day of rest on the day Kelsi will have her procedure.
Thank you for all of your thoughts and prayers.

Sunday, April 6, 2008

Stem Cells have engrafted

Cohen's counts are starting to come back up!!! His white blood cell count started coming up on Friday (it's at 300 today.) His ANC started coming up today (it's 15.) His ANC needs to be above 500 for 2 days before he can go home. He also needs to not have any infections or viruses. So guess what!!! He is negative for RSV today!!! The ribaviren really did the job. He did so well with it. He kept the mask on his face the whole time; even when he was sleeping. (He had to have it 3 times a day for 5 days.) He is doing really good in general. Surprisingly he's fine being up here for so long. Anyways hopefully he will be sent home on Thursday so he can spend his 2nd birthday at home (Friday April 11th. I can't believe he's almost 2.)
Thank you so much for keeping my two cute kids in your prayers!

Thursday, April 3, 2008

May 8th

Kelsi's cath lab procedure is scheduled for May 8th. I told her last night and she just pouted and said 'I don't want them to cut my leg.' It's so cute how kids think the little things like shots or iv's are worse than the actual thing they are having done. Cohen will be up here the same time receiving radiation, chemo, or his 2nd stem cell transplant. It would be ideal if her procedure was done on Cohen's rest day (day before transplant.) Hopefully BMT will schedule Cohen's stuff around Kelsi.

Wednesday, April 2, 2008

Kelsi's cath lab procedure

Dr. Cowley called and said that they are definitely going to close the hole in Kelsi's fontan. There is no set date yet but it will be in 6-8 weeks. They will go through her groin with a catheter and close the hole with a balloon. She will be able to go home after the procedure as long as everything is ok. Here is a picture of the fontan (actual size they put in Kelsi) and then a picture of where the fontan in her heart (labeled RA.) The hole that is in between the artificial wall and the heart is the hole that they will close.

 
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