Interleukin 2 - round 2 - Day 13

November 22, 2014

Kevin at work before his leave to go for treatment.
His co-workers filled his cubicle with balloons,
they are very good to Kevin!

Things are going well, Kevin is improving slowly.  His biggest complaint is that he has this annoying cough, it sounds like bronchitis, but he has no fever or other signs of bronchitis.  He has been taking Nyquil to stop the coughing at night so he can sleep, but he's still very tired.  He still has mild nausea and food tastes funny, but he is getting some tastes back.  He's looking less sick as the days go on, I'm sure by the end of next week he will be back to himself.  I am worried and excited about what the scans will show.  I can see the doctor saying "your cancer is smaller, the treatment is working" so clearly.  But that may just be that I really want to hear that.  Needless to say, we are both pretty anxious.

Duke still hasn't resolved Kevin's short term disability issues.  We've been trying to get this paper work done, and done correctly, since October 20th.  Now we only have 10 days to get it straightened out or they can deny us.  We've been leaving messages and emails with Kevin's doctors and no one has called us back.  We are starting to run out of money!  It's just one extra stress that we do not need.  I didn't expect such a big hospital as Duke University Hospital to drop the ball on this.  I have one more phone number I just found that I can try.  Wish us luck!

Interleukin 2 - Round 2 - Day 11

November 20, 2014

It's been a while since I've written, sorry about that.  Been dealing with a bad back, but now I'm all better.  Kevin is improving nicely.  He is still very tired, things taste really funny to him too, his skin is still very dry and itchy and he's still kind of nauseated.  But all his swelling is gone, his fever has been gone for a while now, his mouth thrush and canker sores have mostly healed, which is good.  All and all he is doing well.  I'm pretty sure he will need next week to completely recuperate since round too was a bit worse than round one.  The side effects came on quickly and seem to last longer, we did read that this was a possibility and it's what is suppose to happen if the medication is working correctly. 

On December 22 we go to Duke and Kevin will be scanned to see if IL-2 is working for him.  I really am praying that it does, it would be really nice to have some good news for a change.

Unfortunately Duke messed up on Kevin's short term disability papers.  We brought them in with us on October 20th, and the PA went on vacation for 10 days and never filled it out.  Now I have nothing against anyone going on vacation at all, I think everyone needs to be on vacation and spend time with their family.  But why didn't she give it to someone else to fill out?  So we called again at the beginning of November, she still didn't fill it out.  So we brought the disability papers with us, again, on November 10th when he went in for his second round and had her fill it out and fax it in.  She did, but we got a call from Reed, the company that is handling the short term disability papers, that she filled it out incorrectly.  So now it's 4 and a half weeks later and we have no short term disability set up.  We are a tad bit worried about what we are going to do for money at this point.  Kevin is stressed about the money, and he really doesn't need to be considering he is already stressed about his cancer returning. 

Sorry for the rant, but I am a little peeved about this taking so long. 

Thanks for your continued support and prayers, it means the world to us!

Interleukin 2 - round 2 - Day 5 (photos of the therapy dogs that came to Duke! soooo cute)

November 14, 2014

11/14/2014 Duke Therapy Dogs, Misty

 Kevin was released from Duke today, yipppeeee.  His creatinine levels went down to 2.8, still high but low enough for them to send him home safely.  He needs to drink plenty of fluids and rest.  He will certainly do that.  He said it's good to be home and I agree with him.

He was able to handle 4 doses in total this time, all in a row, he didn't skip any.  Not that skipping makes a difference, the docs say it doesn't effect how it works unless it's days in between a dose.  So now worried there.  His kidneys took the brunt of the blow this time around and just stopped working to their full capacity.  But they are starting to recover now, he's using the bathroom so much he can't sleep through the night, lol.

11/12/14  Duke Therapy Dog, Riley

It is true that the second round is worse than the first.  I am quite sure he will need the full 2 weeks to recover.  He has all the same symptoms as before, mild nausea, itchy skin, body aches and pains, his moth hurts from thrush as well as canker sores, and he is exhausted.  These are all a bit worse than the last time, he has a new symptom as well, a dry flaky peeling type of skin.  I think he will have to wait till that clears up before he can go into the hot tub, lol.





All and all he did great!  I'm very proud of him.  Now it's time to rest!

Interleukin 2 - round 2 - Day 4

Thursday November 13, 2014

Kevin's blood work from 4am today showed that his creatinine levels went from 4.2 to 3.8, which is good but it wasn't good enough for him to go home.  He has to drink a lot of liquids today to help flush out the kidneys.  He's going to the bathroom like crazy, lol.

His 4pm blood draw showed his creatinine levels went down from 3.8 to 3.2, which is awesome.  Still not low enough to go home.  They said that if tomorrow's 4am blood draw shows that it's gone down to below 3 and in the 2's he will be able to go home to recuperate.  Since it dropped down .6 in 12 hours, I'm pretty sure the next draw will show that it dropped into the 2's.  At least I hope so, I'd hate for him to have to stay there another night, although he would to be safe.

I am home right now because I had family emergency to take care of.  Kevin is doing pretty well actually.  Today he got up, got dressed and walked to the cafeteria.  He was completely exhausted after by the time he got back to his room, but we expected that.  He's mobile so I don't feel all that terrible that he's alone.  He said he had some movies on his laptop that he could watch, so that'll keep him busy. 

I hope we both get a decent nights sleep and that he can come home tomorrow.  The scans are on the 22nd of December to see if this treatment is working.  Please pray that it's working for him, that's all I ask.

Thank you for reading!! 

Interleukin 2 - round 2 - Day 3

November 12, 2014, our stay at Duke University Cancer Center

Yesterday Kevin's creatinine levels were high, so they decided to skip dose 5 and have his levels rechecked in the am.  Today his levels were at 3.9, which is above the cutoff of what they consider safe for someone with only one kidney.  The doctors said that his body has told him he's had enough, so they are stopping the treatment.  This is considered normal, and that some people can't even handle 2 doses the second time around.  One of the PA's even said that she worries about people who don't have any reactions because this treatment is meant to have a quicker reaction as you progress, it shows that the immune system is indeed boosted.  Because the body reacts quicker the second time around, most people only do about half of what they did the first time.  Kevin did 9, so the doctor thought this time he would get to 4 or 5 and he made it to 4, he did awesome.

We are going home either today or tomorrow.  They need to keep him in for observation and to make sure his levels get back to something more acceptable.  They said they are going to recheck his levels later on today, and if they are more normal, we can go home.  If not, they will most likely keep him over night until tomorrow morning when they recheck all his levels again.

Last night we were able to get some sleep, well Kevin's has been pretty much sleeping since his first dose.  So at least if we have to stay over night we will be able to get some sleep or as much sleep as one can get in the hospital.

Thanks for reading  :)

Interleukin 2 - Round 2 - Day 2

November 11, 2014

Today Kevin had his second, third and fourth doses.  His symptoms came on much quicker than last time.  His nausea is much worse so they have him on quite a few different anti-nausea meds which make him sleepy.  So he is in a somewhat catatonic state right now and has been for most of the day.  He keeps saying "I'm trying to wake up" and I keep saying "just sleep through it, it's o.k.".  But I guess our subconscious wants to be awake.

Kevin, not very happy today.

His rigors are well controlled by giving him morphine prior to getting them.  So this dose, I am going to have the nurse come in and give him anti-nausea around the time he get's nauseous.  Hopefully that will work to keep the nausea at bay so he can get some rest.

His last blood work showed that his creatinine levels, which shows kidney function, are pretty high.  They are at 2.3, and the cut off for being allowed to continue is 2.5.  They decided that he would get the fourth dose today at 6 pm, but they will skip the 2 am dose to allow his body to get back to a more normal state.  Maybe we can get a little sleep tonight.  They will retest his blood tomorrow morning and if his levels are lower, he can then have the 10 am dose which would be dose 5.  If not, I'm not sure what the protocol would be.

Thanks for reading.

Interleukin 2 - round 2 - Day 1

Monday November 10, 2014

We got here today around 10 am and Kevin had his blood drawn.  His blood work was good so he was ready to get his treatments.  Physically that is, not mentally.  This time around he had a lot of anxiety so they gave him some anti-anxiety meds to make him more comfortable.  We met with the PA and then we checked into our room at about 1 pm.  The last time and this time his creatinine levels were at 1.5, which is pretty good.  His norm had been 1.8 so we are happy it trended down a bit.  A person without any renal issues is about 0.9.

Kevin had his first dose of IL-2 today at about 7 pm.  We used the same "preemptive strike" of giving him the morphine before the rigors started.  It seemed to work well, he didn't get any rigors.  But he did get quite nauseated and vomited quite a bit.  Not unexpected with this treatment.  The last time he vomited with the first dose too, so hopefully it will be the same this time around and he won't throw up too much more.

The nurses are so very quick here at getting him his meds. it's wonderful.  They brought him in some compazine and administered it into his PICC IV and he started to feel a bit better.  He is now sleeping.  He told me that he thought the rigors were starting, but then fell asleep without shaking.  But the nurse said it was a good idea to give him some more morphine just in case.

He really disliked being nauseous, I don't blame him, I pretty much hate that feeling too.

Thank you all for reading.  I'll keep you posted tomorrow on how his other doses go.

Interleukin 2 - round 2 - Day 0

Today is Sunday November 9, 2014 and tomorrow my husband, Kevin Flynn, goes in for his second round of IL-2 treatment.  He will be scanned around the 15th of December to see if this treatment is working for him.  We are praying for a cure!

I know Kevin will be annoyed with me for writing this, but I will anyway. A lot of you may not know this, but Kevin was involved in the 9-11. Not as a first responder, but as a worker. His cancer is a world trade center related cancer. Kevin has ALWAYS been a hero in many ways. The fact that I write this is what will make him mad because he feels "there were many hero's that day" and I think he feels this acknowledgement may take the credit away from others. It doesn't by any means.

Of course the fire fighters and other first responders are the greatest hero's and give their lives daily to help serve and protect. But in my mind, Kevin is a hero because when he was getting ready to leave NY that day to come home to me and his baby when he saw that some women had fainted. He stopped, threw one at a time over his shoulder, and brought them to an ambulance, thus saving their lives.  When others were running away from the towers, he ran towards them to help.  I think that hero's have that natural tendency to put the well being of others over their own well being, it just happens naturally.  Most people have a natural self survival reaction when they see danger, it's to run.  But he didn't run that day.

At the time we lived in a two family house in Suffern, NY and the tenants who lived below us also worked with Kevin. I can remember them coming home and I was standing on the driveway with Jack, who wasn't even one year old yet, trying to look past them thinking "where is Kevin!! Why didn't he come home with them!?!?" They usually would come home at the same time since they all took the train into New York City.  When I asked them if they knew where he was, they looked at me, clearly shaken up and distraught and said "knowing Kevin, he's probably building a ladder to save those people". And that sums it all up about the type of hero my husband is. And now he will be a hero once again in his fight against renal cell carcinoma!

 

Please pray with me that this treatment will be his cure!  xoxoxo

 

If you have any questions, please feel free to post them at the bottom.  I will do my best to answer any that you have.  I am not a medical professional, but I can give you answers to what I know as a care giver.

Day 13 of Interleukin 2 treatments

November 1, 2014

It's been 8 days since Kevin's 9th and final dose of IL-2.  His next round is November 10th, then he's scanned.  If there is improvement, he will have 2 more rounds at the beginning of January.

Kevin with our Halloween pumpkin

Everything is going as it has been, slowly recovering, but doing pretty good.  He's still fatigued and naps a lot, but he's really getting a bit better everyday.  One odd thing he has been saying is that food tastes bad.  He has to over season it to get any taste at all.  I think this is a common side effect.  I wonder if it could be that his mouth is still healing from the thrush and canker sores?

I think the idea of going for his next treatment on November 10th is weighing on his mind.  If he get's a second round, we may take 3 weeks in between.  We do have a choice, so that's nice.  But for now, we can't really change the next upcoming date.  We have 2 children, 14 and 11, and they need to have someone stay with them when we are at Duke.  A good friend of mine has taken off of work to stay with them and drive them to school.  So we really can't change this date.  Let's all pray that he will be ready to go and that this up coming week will bring major healing for him.

Thanks for reading  :)