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.

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