Day 2 of chemo

December 19-20, 2013

Morning of Day 2.  Ready for more Chemo Therapy!

Jaycee woke up feeling pretty good after a long day of chemo and surgery the day before.  I think it was all the pain meds and zofran that was keeping her happy.  This was short lived, we could see the side effects of the chemo kick in by early afternoon.  She began to look pale and you could see in her eyes that she was not feeling good at all.  The vomiting began and she started to not want to eat and that is not like Jaycee!  We all know how much she likes to eat, you can tell from all her pictures that she is WELL FED!!! She would never miss a meal!  Actually in most cases she would "Double Down" (if you know what I mean)!!

 

Day 2 and the sickness begins.

She was given some more drugs for chemo and lots of fluids because they were worried about dehydration and also they wanted to flush the medications out of her system as fast as they could.  The faster they were out of her system the better.  We had to be on a new schedule for diaper duty, She had to be changed every two hours which means I changed enough diapers in two days to cover my diaper duty for about two weeks! :)  

Just hours after receiving the chemo she looked even worse.  It was scary to see and it broke our hearts to know that she was suffering.  I would do anything to be in her place and to suffer all the pain so that she would not have to.  

The nurse did a blood draw and they found that her hemoglobin was low.  That concerned them since she was just starting. They expect it to bottom out after about 7-10 days and the level she was at would mean she would bottom out a lot sooner so they had to do a blood transfusion to get her hemoglobin levels up to where they felt comfortable letting us go home.  It is not uncommon for cancer patients to receive blood transfusions multiple times throughout their treatments.  It was just another thing for us to worry about but it ended up being a good thing.  She almost immediately felt and looked better after receiving the blood, her color came back, her heart rate decreased and she seemed to have more energy.  It was good to see some improvement but it will only be short lived until the chemo drops her levels again the next few days.  

  

Feeling sick before the blood transfusion.

 Beginning her blood transfusion. 

The transfusion went well and she did not have any side effects or reactions to this "foreign" blood going into her little body.  We were able to get some rest and prepare to go home the next day.  We were ready to go home but worried for fear of her getting sick and being capable of taking care of her.  We would not be able to do it without all the prayers and help from loving family and friends.  We are lucky to have such great support.

December 20, 2013

Jaycee slept pretty good and the next day I think she was even ready to get out of the hospital.  She would have an occasional spell where she would vomit or not feel good but for the most part she was doing fairly well.  She was hydrated enough and was eating well enough that the doctors did not have to send us home with IV fluids that we would have had to give her every night.  They were able to take the needle out of her port and send us home. 

  

Taking the needle our of her port to go home!!  She just laid there and didn't even move.  What a trooper!

Bundled up ready to go home!

After taking the needle out we were discharged and the journey begins as we head home on our own.  The last three days were filled with teaching and lessons on how to care for her.  We had lots of lessons about the medications, so now it was time to put to practice what we've learned!! We will see how it goes.    

First day of Chemo Therapy

December 18, 2013
After a long sleepless night of tossing and turning on the small couch me and Angie had to share, the time finally came to start chemo, well we thought it did anyways.  The Nurse Practitioner came in to talk to us as we were getting up for the day and she told us of some concerns with Jaycee's port.  We were concerned and frustrated because they told us that we were not able to start chemo until they talk to some cardiologist about it.  I guess when they placed her port it went in farther that normal.  The end of it had reached and actually went into the right atrium of the heart.  This is not common and it is unusual that it would be placed that far in.  They were concerned with this because it could potentially cause a arrhythmia with the heart and could be dangerous for little Jaycee.  This is the last thing I wanted to hear!  There was no way of fixing it, they would have to go back into surgery pull this one out and put a new one in.   This would be the only way to fix it and I did not want her to have to go through that again.  The oncologist and NP's wanted to do some tests before we started chemo just to confirm that it wasn't going to cause any problems.  They had a 12 lead EKG done and had several cardiologist look it over to see what they thought about leaving it in place.  After several hours of waiting the oncologist told us that it was not a concern and that the port being placed where it was would not cause any problems and that they would keep an eye on it. This was a big relief for us!!

   

Jaycee getting a 12 Lead EKG done.

Finally ready for chemo after waiting for HOURS!!

The first day of chemo has began!! I felt bad because I knew that it was only a matter of time even hours before our little angel would start feeling sick!  It was a relief to see that medicine go into her body because I know it is what will cure her but it was very scary at the same time!  There is a lot of unknowns with the medications that they use.  Everyone can react a little different.  We were told that usually the first cycle of chemo is the worst and I hope that is true.  The drugs that are given on day one of every cycle take about six and a half hours to infuse.  She was a champ through it all and she actually had very little side effects from it throughout the first day.  Day 1 down!!!  We are on the road to kick this cancers butt!!

Port surgery

December 17, 2013
Today we were scheduled for Jaycee to get her port placed so that she could start her chemo treatments.  She was also scheduled for an extensive hearing test and a Echo cardiogram.  Some of the medications she will be receiving have a high possibility of causing hearing damage and possibly heart problems so they will be monitoring that closely throughout this process.  As we arrived to same day surgery at Primary Children's we were both a little nervous and didn't know what to expect.  We were placed in a room and had Jaycee all prepped and ready for the procedure and then we were told by the Nurse that the surgeon was 2 hours behind schedule and that we would have to wait.  I think this made it harder and made us more anxious because we were just wanting this to be all done.

Me and Jaycee playing trying to pass the time!

  
After holding Jaycee in my arms and walking the floor with her for two extra hours the anesthesiologist finally came in and told us it was our turn.  I don't think he had any idea how hard it was to keep a fasting 3 month old baby happy when she hasn't eaten for 5 hours.  It was a relief but nerve racking!  He told us that the port placement and the other tests they were going to do would take around 3 hours.  The whole time through all of this Jaycee was calm and just happy to be there.  She had no idea what was going to happen to her and that is what was hardest for me.  

Sitting and waiting for our baby to be done with surgery.

After 3 long hours we finally got word that she was in recovery and that Angie was allowed to go back to be by her bedside as she woke up.  It was hard to see her in these conditions and just lay there with the look on her face of "what is going on with me?"  This is when I could see in her face the feelings of pain and sickness.

(Just waking up from surgery for her port)

  
Even though she was in pain she still had stories to tell us and a smiled from ear to ear as we walked by her bedside up to the floor where she would be spending the next few days.  I wished I could be half of happy as she always is! 

After getting to our room she grabbed my finger and would not let go until she fell asleep.  You could tell she was scared and didn't know what was going on.

By the time all these test were done it was too late to begin chemo so we were able to rest up and get ready to start it the next morning.  It was a long night laying and wondering what the next day would bring! 

Diagnosis

When Jaycee was about a month old I noticed that she was a little bigger on the left side of her body. I decided to Google what may cause that to happen and found something called hemihypertrophy (you can find more information about this by clicking the link to the right).  I started to show a few people to get their opinion and everyone didn't feel like it was a big deal and that I was over reacting.  We went to see our family doctor and he could tell she was slightly bigger on the left side but said he would keep a eye on her.  He didn't see a reason to do anything else at that time.   I still didn't feel good about it, my motherly instinct told me there was more to it.  I came across a Facebook friend that has been dealing with Hemihypertrophy with her son.  I started talking to her and she referred me to her pediatrician so that I could get a second opinion.  I was able to get an appointment within a couple days.  Dr. Paxton took a look at her and he suspected that she had Hemihypertophy.  Those that are diagnosed with this are not only dealing with one side of their body growing larger than the other but they are also at a higher risk of developing tumors, especially in the liver and kidneys.  Regular ultra sounds and check ups are necessary to monitor this.

Dr. Paxton ordered an ultra sound at primary's and it was scheduled for December 9 2013 this was the day that changed everything.

During the ultra sound they found a mass on Jaycee's liver.   They could not identify exactly what it was so they had to send us for a MRI the following day to see if they could figure out what this lesion was.

December 10 2013 we were back to PCMC to get a MRI of her abdomen.  It was a LONG day waiting for results and setting in the recovery room watching poor little Jaycee come out of anesthesia.  Also it was NOT the way we wanted to spend Angie's birthday.  After about 8 hours in the recovery room we started having doctor after doctor come in to talk to us.  We received the news that no parent every wants to hear.  The team of radiologist, oncologist, and surgeons reviewed the results of the blood work, ultra sound, and MRI and all signs were pointing to this mass being Hepatoblastoma.  Hepatoblastoma is a cancerous tumor on the liver which is one of the most commonly  seen with Hemihypertrophy.  Meeting with all these doctors was difficult and it was hard to take it all in.  It all almost didn't seem real.  They wanted to do a biopsy of the tumor before they started any treatments just to confirm everything.  We were told that chemo therapy and at least one surgery was going to be necessary to hopefully get rid of this tumor.  The tumor is in a difficult spot to remove because it is setting along some major blood vessels in the liver. The surgeons told us the severity or difficulty of removing it was categorized by pretext 1 through pretext 4 ( pretext 1 is the least severe to pretext 4 being the worst).  Jaycee's tumor is a pretext 3 because of the location and size.  We met with Dr. Skarda who is the surgeon that will be doing the operation when that time comes around.  Dr. Barnette is the oncologist that will be seeing Jaycee through this whole journey and he is recommending chemo therapy before any surgery is done.  By doing this it will increase the chances of getting all the tumor out and not leaving anything behind.  We were given so much information this day and it was very overwhelming!  They scheduled us to come back for the biopsy in two days because they wanted to get a start on this right away.

December 12 2013.  Today was time to do the biopsy.  The doctors were so sure that they knew what they were dealing with so they did not have to do a surgical biopsy.  They were able to use a less invasive way to do it by poking a long needle in her abdomen and getting core samples of the tumor.  They admitted us after the procedure to monitor Jaycee's condition and vitals.  It was another difficult day.  We were overwhelmed with a bunch more information.  Today was the day that we were given the overall plan on what the treatment was going to be for little Jaycee.  It was good to hear that there is a pretty good chance of beating this cancer but at the same time it was scary to see all the side effects and things that can go wrong.  We have all the faith and confidence in the world that our doctors will take care of our little angel.  We are scheduled to start chemo therapy on Tuesday December 17th.  The tentative plan goes like this: 2 cycles of chemo therapy to try and shrink the size of the tumor then see if it is where Dr. Skarda feels like it can be removed.  Then we will do 4 more cycles of chemo to try and get the rest.  The whole process should take about 5-6 LONG months.

This is right before they did the biopsy. 

  Since we were admitted this time we had to spend the night and this is the bed we shared, it made for an extremely long night.

We had not seen our boys for a few days because we were busy dealing with everything at primary's so Grandma Troyer, Aunt Amber, and Bronte brought them up to see us.  It was good to hang out with them for a short time and show them that their little sissy was being taken care of and in a safe place.  I think all they cared about was the superman and spider-man statues in the hall though!!

We will try and do an update once a week of how she does with her treatments. Thank you so much for all your love and prayers they are felt and much apprenticed. No child or parent should ever have to go through this but we couldn't do it with out you all!!!

Birth Story

While I was pregnant with Jaycee I started having braxton hicks contractions pretty regular since I was 20 weeks.  I had a feeling she was probably going to come early. So on august 25 I went up to a family party at a cousins house in West Jordan with Great Grandma, Ann and Lynette.  The whole time I was there I was just uncomfortable and having pretty strong contractions that were consistent. As we were getting ready to leave I had a feeling I should at least go get checked at the hospital on our way home. Blake was working so they dropped me off at the fire station and he drove me to Utah Valley Regional Medical Center. After we were all settled in a room the nurse checked me and after an hour I had changed from a 3 to a 4 so they decided to admit me. Labor went really well and Jaycee was born 3 weeks and 1 day early on August 26 weighing 7 pounds 5 ounces and 19 inches long.  She was struggling to breath so they rushed her to the NICU.  Jaycee had a hard time keeping her oxygen saturation's were they are suppose to be so they had to keep her on C-PAP and oxygen for a couple days.  On day five she was finally well enough for us to take her home!

And this is where Jaycee's Journey begins.........