Second cycle of chemo therapy.

January 23-24, 2014

We are back to begin Jaycee's second cycle of chemo.  We had a CT done on January 13, 2014  to look at the progress of the first cycle.  Since it made her really sick the doctors wanted to adjust the dose of medications she is receiving in hopes that she will have less side effects.  the CT showed that the tumor is still about 3.5cm big, so it has not changed in size, but it does show signs of necrosis or dead tumor.  This is a good sign, the treatments are working and the tumor is dying.  It is also a good thing because they were able to modify the dose of one of the chemo therapy medications.  This should reduce the side effects, especially the mucusitis (mouth sores), and hopefully help her recover more quickly.  If things continue to go as planned the doctors want to do the surgery in about 4 weeks.  This will give them time to finish this round of chemo and then give her about a week to recover.  Surgery is going to be hard but this is ultimately what will cure her and get rid of the tumor.  After that is done they will follow up with four more cycles of chemo treatments to make sure all the tumor cells are dead.  During our clinic visit last week the doctors and surgeons were very optimistic about the progress and what they are seeing so that makes us feel much better!  We are headed in the right direction.  

She was all smiles.  What a good way to start another round of chemo. 

Jaycee is finally starting to laugh, but catching it on video is not very easy.

Jaycee was happy and healthy going into this second cycle.  We hope that the doctors are right and that she will have an easier time with this one.  During the first and second day of each cycle of chemo we are required to be admitted for a minimum of two days.  The first day they start off by giving her lots of fluids and magnesium for about four hours to prepare her body.  Then the treatments can begin.  It takes about seven hours to infuse 2 drugs the first day.  Then day two only takes about an hour to receive three more drugs.  Jaycee has been so happy and you would not even be able to tell that anything was wrong.  Some of the effects including the nausea and vomiting are delayed so we will be waiting for that to set in over the next few days.  We will be going home with a feeding tube and IV fluids so that we can make sure she is getting the nutrition and hydration she needs.  That was one of the problems before, she got dehydrated and quit eating.  This will hopefully help us from getting behind on that and will keep her feeling better.   Other than being bored and having a long night sleeping on the couch, this cycle has gone fairly smooth and painless.  We hope that this is the trend for the next few weeks!!

Little Jaycee is a trooper and has taught us so many things.  We don't know what we would do with out that contagious smile!!  Life has been busy with trying to balance everything with Daxton, Crue, and all the hospital visits and we would not be able to do it with out the help of awesome family and friends.  We will keep posting about her progress to keep everyone informed.  Thank you for your love and support!!!    

Day 11-->Fever -->ER visit--> Ambulance ride--> hospital stay--> ICU = One L O N G week at the hospital!!

December 28, 2013--January 7, 2014

On day number 11 of the first cycle of chemo was the beginning of a long hospital stay and some SCARY moments that I hope we never have to see or deal with again.  

On December 28, 2013 it was early in the morning and Jaycee was restless and could not sleep well.  Her head felt warm but every time we took her temperature it registered normal.  It didn't seem right but we thought we would wait it out.  I ended up getting up and having to rock her the rest of the night because she couldn't sleep.  I was debating on going into work but it seemed like she was going to be fine and get better throughout the day.  By early afternoon Angie began to notice that she was getting weaker, lethargic, and she was to the point where she did not want to hold her head up.  She called our oncologist and they told us we needed to be seen at the nearest ER.  She ended up driving to Utah Valley Regional Medical Center so that I could drive down from work in Orem and meet her there.  We ended up getting right in and the Doctor could tell she was really sick.  She ended up having a fever of 101.4 and that means we are automatically admitted at primary's to watch her.  Our Doctors at primary's wanted her transported by ambulance.  Since we were there at the ER they we were able to do the transport and take her in our ambulance.  It was a lot different being the patient care guy in the back of the ambulance when the patient was your own child.  I hope I never have to do that again but it was a cool experience at the same time. 

Waiting in the ER at UVRMC to hear back from the doctor at primary children's. 

 

Ambulance ride to Salt Lake with Orem Rescue 33. 

   

Angie enjoying the ride in the back of the Ambulance. 

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 December 29-30, 2013

After getting to the hospital the night before we had no idea or even expect that we would be spending the next ten days in the hospital.  Fevers can be really serious to chemo patients since their bodies are unable to fight off any infection that it could have got.  During the transport up to primary's Jaycee was given an antibiotic to help with any infection that she might have.  There were several blood tests and samples that they took to try and figure out what was causing her fever and making her so sick.  Within less than a day of being there we found out that she tested positive for Rhinovirus.  It is a virus that is basically like the common cold.  It was something that would have to run its course because antibiotics would not get rid of a virus.  Jaycee began to get congested and the symptoms were starting to manifest themselves more and more almost by the hour.  They nurses and doctors in the cancer unit were just trying to control her pain and make her comfortable. She was going on almost 4 days without eating anything so they finally decided to do an NG tube that we could feed her through.  Things were going fairly good and we were hoping that she was on her way up from this sickness and that it would be short lived.  The feedings went well and we felt a lot better knowing that she had some milk in her stomach.  We felt like we were starving our kid even though there was nothing we could do about it. Around the evening time on December 30th we could tell that she was getting worse and that she didn't seem to be improving at all. 

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December 31, 2013

New Years eve was not very exciting for us this year.  Our baby was getting more and more sick every day and we were just hoping for something to turn around and see her show some improvement.  On this day she was starting to have so many secretions from the rhinovirus and mucusitis that she began to have difficulty breathing.  They wanted to suction the secretions out but it was to much of a risk since her platelet count was low and they didn't want to risk making her bleed in her airway for fear that the bleeding would not be able to stop.  They decided to do a platelet transfusion so that they would be able to use suction and help her breath easier.  After the platelet transfusion they were able to do some deep suctioning further down in her airway and it seemed to work well in the beginning but by time we reached the afternoon she had so much mucus that the suctioning was not effective.  

At this point we were able to see basically the whole inside of her mouth was one big sore from the mucusitis.  Every time we would swab it and clean it out the skin would slough off.  It looked so painful and you could tell that she was hurting.  The doctors ordered morphine to help control her pain.  By the afternoon oxygen was needed to help her breath easier and then around 11pm she got to the point that the oxygen she was getting through the nasal cannula was not enough.  The doctors thought she needed more help and the best place for them to do that is the PICU (Pediatric Intensive Care Unit).  The respiratory therapist came to our room to assess her and he was there waiting to walk down to the PICU with us.  He suggested that she be put on High-flow oxygen to help open her lungs and to help with the secretions.  While waiting to get a room things turned bad quickly.  I was holding her and trying to help her in any way I could.  I felt so helpless.  I could tell by the look on her face that she was fatigued and that she was wondering what was going on and why she was feeling this way.  I would give anything to have been in her place.  To see your child suffer while you stand there unable to do anything to make her better was the worst feeling I have ever felt.   Jaycee was struggling to breath and fatigued for so long that she couldn't keep up.  She started to turn blue and her oxygen saturation's declined and dropped to the 50's within seconds.  I, being a paramedic, and knowing how serious this could be, thought that this could not end well.  Luckily we had the respiratory therapist close by and after a few minutes of stimulating her and trying to suction her airway, they were able to get her breathing normal again.  The Respiratory Therapist put the high flow oxygen on her which, luckily, helped a ton!!  It was amazing the difference it made.  At that point I wished they wouldn't have waited so long to try this earlier because this is definitely what she needed.  For some reason she remained tachycardic (High heart rate) for a bit after this episode.  This concerned the doctors so they wanted to check her heart by doing a 12 lead EKG.  This would give them a little better look to see if there were arrhythmia's or any underlying causes of her heart rate being so elevated. The EKG looked good and they thought it could have been the stress on her body.  It was a relief for us knowing that.  

Heading down to the PICU.

Getting 12 lead EKG done before we get moved to the PICU.

After getting her stable, we made the trip down to the third floor to the PICU.  We were met by a group of doctors, residents, fellows, nurses, and respiratory therapists as we entered her room.  Everybody was very concerned and it gave us peace of mind knowing she was in good hands.  Minutes after arriving at the PICU the clocked turned to midnight.  This was not the way we planned on ringing in our New Year but at least we still had our daughter with us and she was actually looking better than she had just minutes before. 

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January 1-3, 2014

The first day of the new year appeared to be better than the day before.  By this time we were starting to get exhausted and it had been a few days since either of us had seen our boys.  We thought it would be a good idea to have them come up and spend some time with them. They were starting to miss us and you could tell that they were very concerned about their little baby sister.  They wanted to see her so bad but they were not allowed in the PICU.  It was a lot of fun seeing them and being able to do some activities with them.  It helped get my mind off things.  

(Here are the pictures of our first day in the ICU and when Daxton and Crue came to visit us).

              

These were all the pumps they had going while in the PICU.  This made it very difficult to hold her.  One of them was a Morphine drip and this ended up causing big problems later on. 

 

Grandma came to visit. 

  Crue missed his daddy.   He didn't want to let go!

       There is a room for the kids to play in and to do crafts.  They loved it.  We we able to play in there for a while and spend time with the boys. 

 

After spending a few hours with the boys I thought it would be a good idea to send Angie home and spend the night in our own home.  She needed a break and it would be good for Daxton and Crue to have her home for a change.  This turned out to be the be a good thing because Jaycee ended up having another episode that would have scared Angie to death.  I said good bye to them and I walked back upstairs to hopefully find Jaycee sleeping so that I would be able to lay down and get a few hours of rest before she woke up again.  When I got back to her room I found the nurse and Respiratory therapist in there. They said she was doing alright other than her oxygen saturation's kept dropping, they increased her oxygen and that seemed to help.  They all walked out of the room, only myself, Angie's sister and her husband were in the room.  We were talking as we stood around Jaycee's crib looking at her talking about how our week has been.  A few minutes later the alarms started to sound which was a regular occurrence.  I was use to hitting the silence button on the monitor because it was a false alarm due to a sensor coming off.  But this time I could tell that something was really wrong.  Even though it was dark in the room I could see the color drain out of Jaycee's face.  She had stopped breathing and that is why the alarms were going off. Luckily the nurse and doctors were right outside the door and they came running in thinking that there was a problem and they noticed right away that she wasn't breathing and they needed to do something fast.  This was one of the scariest moments in my life.  To see your child stop breathing and doctors scrambling to help her.  They were not quite sure at first what was causing her to do this but they decided to try and giver her Narcan, which is a drug that reverses the effects of narcotic pain medicines.  She was on a morphine drip for pain so they suspected that she possibly stopped breathing because the pain medication cut out her respiratory drive.  It took about a minute after they gave her the narcan but she finally started to breath on her own again and then just a few seconds later she was screaming.  Hearing her cry never made me so happy.  That would have to be the worst feeling in the world to know that you were close to loosing your child.  This was a good reminder to me to remember how fragile life is and how quickly it can be taken from us.  I am glad Angie did not have to experience this with me because she would have been shaken up pretty good.  To my surprise, Jaycee was able to sleep great that night after they reduced the dose of the medications she was receiving.  We are grateful for the the Doctors and nurses that took care of her that night because they truly saved her life.   

Pediatric Intensive Care Unit

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January 4-7, 2014

After spending three days in the PICU we were able to move back up the the fourth floor in the cancer unit.  Jaycee still had to be on high flow oxygen for a couple more days before she was able to ween off of it.  Eventually all she needed was a nasal canula to keep her oxygen levels where they needed.  At that point they were comfortable sending us home.  After almost two weeks in the hospital we were ready to go home also.  We had to take her home on oxygen and her feeding tube/pump.  By time it we were ready to leave the hospital she was finally starting to smile again and we could tell she was feeling a little better.  Knowing that helped us feel more comfortable to bring her home.  her blood counts were improving and the mucusitis was getting much better by this point.  

Last couple of days in the hospital before we went home. 

Once we got home Jaycee was as happy as could be.  Every day she improved and she finally got mad and pulled her feeding tube out.  I think that was her way of saying I am done with it.  She began eating on her own again.  She was back to normal after only a few days.  It was great to see that big, happy smile again!!

More chemo day number 9 of first cycle

December 26, 2013

At this point Jaycee was really starting to feel the effects of the chemo.  She was looking sick and we could tell at this point that she was starting to develop mucusitis (inflammation of the mouth and mucus membrane lining the GI tract).  She would drool a lot more and you could tell her mouth and throat was inflamed and sore.  We are day 9 into the fist cycle and we were told that she would be feel the worst around this time.  She had not eaten for over 24 hours at this point and it was beginning to worry us.  We had our home nurse come and access her port so that we were able to give her fluids to help her with dehydration.  This made us feel a little better but she continued to not eat and the sores in her mouth began to worsen. 

Our home RN accessing her port and doing a blood draw.

When we we were at the clinic getting another dose of chemo, Jaycee seemed fine.  The Doctor checked her and he ordered to her to receive more fluids for the next three nights so that she didn't get dehydrated.  He wanted us to keep an eye on her because her.  Her blood counts were bottomed out and her ANC (Absolute Neutrophil Count) was 0 so he was hoping that they would start to come up which would help the sores in her mouth go away.  Having a ANC count at 0 basically means she has no immune system and if she were to catch something her body would not be able to fight it off.  He told us the mucusitis would hopefully start to get better over the next few days as her counts increased.  Little did we know that things were just going to get worse.    


   

Day 9 of first cycle.  More chemo at the clinic. 

So we took her home and watched her.  We tried to do everything we could to prevent her from getting sick.  But her condition continued to deteriorate and she still would not eat.  It was really concerning at this point and we called the oncologist and they said if by the following Monday she hasn't eaten then we will need to bring her in.  That seemed like a long time to me because that would be almost 5 days without food.  We thought she would hopefully be on the up swing so we held out and did what the doctors said.  

Home for the Holidays!

December 25, 2013

We were lucky enough to be home for Christmas.  It was great to be together with the boys once again.  It was very enjoyable and we appreciate all the love and support that we have received from family and friends! Thank you so much!!  HAPPY HOLIDAYS!!

                                            

Christmas day!