Category Archives: Uncategorized

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Chemotherapy Day 1

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To start off, I had to take oral steroids Monday night before bed and wake up at 2:30 to take more.  The steroids are to help if I were to have a reaction to the chemo drugs.  I did not get much sleep.

Once I checked in at the infusion center and picked out my recliner for the day the nurse accessed my chest port.  She drew blood and sent it to the lab.  We had to wait for the results to make sure I would be well enough for treatment.  My numbers were good, so the nurse ordered my meds and started pre med prep.  She gave me Benadryl, Decadron (steroid), Pepcid, and Zofran.  After the Benadryl I felt extremely tired, but I couldn’t sleep because my legs were so restless.

  

The nurse then started the chemo drug Paclitaxel in the IV port.  It started slow to see if I would have an allergic reaction.  I didn’t react, so my nurse sped up the drip.  After an hour and a half the nurse accessed my IP (abdominal port) port to give me my second chemo drug, Carboplatin.  The port was working really well so the drip ran for about 1.5 hours.  I had to move from side to side every 15 to 20 minutes so the drug would move through out my abdomen.  I was finished with the drips a little after 3:00.

I think I gained 10 pounds with the complimentary lunch ( I do love food😉) and the 2 liters of liquid they pumped into my abdominal cavity.  It felt a lot like being pregnant.  My abdominal port is a bit sore, since they scrubbed it so well before accessing it.

They gave me a schedule to take my anti nausea medicine and I have been sticking with it and so far I have been good.  I slept well last night, I did wake up groggy.  I am just taking it easy and will try to get as much rest as I can.  Taking it day by day as we have no idea what to expect.

My next treatment will be next Tuesday, June 16.  I will be getting the Paclitaxel drug in my IP port.  The following week I will have off.  That week Isaac is scheduled for his next craniofacial surgery.

And of course, it is very hard for Zane and I to be serious, so he downloaded a Meme app and is having way too much fun with it!  

 

My friend had our kids yesterday afternoon and wanted to show support, so she dressed Isaac up.  So cute, I had a good laugh!

 
My amazing friend, Angie, made some images if people wanted to change their profile picture or cover photo on Facebook in support of my battle with ovarian cancer.  I thought I would post them here if anyone wants to save them and use them.

  
   

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Hair is overrated

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Is it?  I’ll admit this last week I’ve really been thinking about losing my hair and I guess I’m a bit conflicted.  Part of me thinks, “it’s just hair, it’ll come back.”  Another part of me thinks,”how cool would it be to do chemo and not lose my hair.”  I also think about how the kids will feel when they see their Mom has lost her hair.  I’ve searched the interweb for different head coverings.  Should I wear a wig, hats, scarves, etc?

I decided to go get my haircut short before I start chemo.  As I was driving to my appointment I had time to think about this hair thing.  This was probably the hardest haircut I’ve had, actually it really wasn’t.  However, it did really hit me that this is real and happening.  I realize I do love having long hair, but ultimately that doesn’t make me who I am.  The last time I cut my hair short I donated my hair.  It’s a bit ironic.  I will do this and darn it I’m gonna rock it!

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Zane took this picture of me before I left to get my haircut.


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Kyla took this picture of me when I got home!!

I will be starting chemotherapy tomorrow, Tuesday, June 9.  My Oncologist said I will have 100% hair loss by the third week.  So, I guess we’ll see what fits on my head best.

There are many side effects to chemotherapy, besides hair loss.  My Oncologist gave me 4.5 pages of the different side effects.  Everyone reacts differently, so I don’t know what to expect.  The nurse who scheduled my chemotherapy told me that it’s common to feel as if you have the flu a few days after.  Some common side effects are nausea, fatigue, neuropathy, joint and muscle pain.  To help with some of these effects I’ve been prescribed a medicine cabinet of drugs, it seems.  I’ll hope and pray for the best!  I have to fight like an Eagar!  Just like this Eagar!

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Our good friend has started a You Caring page to help raise money for medical expenses for our family.  If you would like to donate or share our page, please check out the page by clicking the picture of Isaac above.

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Headed Home & Our Soccer Player

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I’ve been meaning to write a post for the past two weeks.  I can’t believe it has been two weeks since Isaac had his surgery.  We were told that depending on how Isaac was doing he would be in the hospital for 3 to 5 days to recover.  He was doing so well in the hospital that they sent him home on Saturday the 11th, which was a bit of a surprise to us since we had planned on him at least being there until Sunday or even Monday.

I had gone home Friday night, and was going to bring the kids to the hospital on Saturday to see Isaac.  But, I got a text from Zane while at Barrett’s soccer game that said the Doctor was comfortable with us caring for Isaac at home and they were going to discharge him.  Yay, everyone was so excited!

Here are a few pictures of Barrett from his first two games.  He is so excited to be playing soccer and tries so hard.

His love for soccer started young!  Oh, how I miss when they were so little!

 
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Here are a few pictures of Isaac while he was still in the hospital!

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This is a picture of his cute friend, who also has Apert Syndrome, that stopped by to visit!

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Zane said Isaac was giving him this look when his phone would go off, as if to say,”who are you texting Dad?”

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All packed up and ready to head home!

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The turning begins

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We started turning the distractors today.  We will turn them every day twice a day for 21 days.  Each full turn moves the distractors 1/2mm.  Isaac did not even flinch or react to Zane turning them this morning.

Isaac has been doing great!  He has been playing with his toys and talking, although he mostly says, “dada, dada, dada”.  We have been able to take him for walks inside the hospital.  Joseph and Sarah have been visiting this past week and were able to come and visit us on their way out of town yesterday.  The hospital is still under visitation restrictions, so no one under 13 is allowed on the patient floors of the hospital, but since we were able to take Isaac out the girls were able to see him.  Here are pictures from our walk yesterday.  He fell asleep while we were out!

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He had X-rays taken yesterday to check the placement of the distractors.  Zane carried him down to radiology for those. I took pictures of the X-rays.  You can see the plates and you can also see the line where they cut his skull.

Isaac received a cape from Tiny Superheroes, a tiny cape company who seek to empower kids who exemplify strength & determination as they overcome illness or disability.  I still need to get a picture of him wearing it, but here he is in the hospital crib playing.  We also had some friends stop by, who we met in December who have a daughter with Apert Syndrome, and they brought him a sign with his name on it.

  

He won’t take a pacifier, but he loves his bottles.

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We have our own InfANT MAN!!

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Isaac had his first surgery yesterday and he did great.  He had a Posterior Cranial Vault Distraction. During surgery they make a cut in the posterior part of the skull and adhere plates and distractors rods.  We will turn the rods daily for 21 days, which will push back his skull and allow for bone formation in between the bone segments.  The reason for this is to expand his cranial vault and give his brain room for growth.

Here is a picture of an infant skull model with the plates and distractors rods.  Isaac’s plates and rods are not in the same location as these.

Here are two pictures of Isaac’s first CT Scan from last September.  You can see that his coronal suture is fused.

His surgery went well!  Everything went as planned.  His ENT was also in the OR to do a sleep study scope, to see why Isaac’s oxygen drops when he is asleep, a Bronchoscopy, a Laryngoscopy, and to check his ears for fluid.  The outcome of all the scopes was that Isaac’s walls in his throat collapse while he is sleeping, so we will be starting CPAP at night.  Isaac had fluid in both ears, so the ENT placed ear tubes in both ears.

Here he is in recovery.  He was pale, I know hard to imagine our kids any whiter, his eyes were a bit swollen and he was very sleepy.

And here is a picture after we moved up to his room.  He did not have to spend the night in the PICU!

Isaac is a strong boy and a fighter!  We are so very proud of this little boy!

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Because everyone wants to see what you look like pregnant!!

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In November 2013 we found out we were expecting baby #4.  I decided to make a fun count down shirt. The idea came from here. I really thought it would be a fun way to document my growing belly and I would take pictures often.   But not feeling well this pregnancy gave me no motivation to take belly pictures, especially once I got to 29 weeks. So here are the few weeks that I actually took pictures of.  I thought I started before Week 20, but I couldn’t find any pictures before that.

Week 20
We also found out the sex of the baby this week!  The boys went to the appointment with us.  I thought they weren’t paying attention to the ultrasound tech, but they were.  Since Kyla did not know we decided to surprise her.
At first she was disappointed, because she wanted to have another sister!

Week 23


This is my pregnancy is fun look!
Week 24
Week 29
And then we come to week 29.  I had a Doctor appointment this week and when my Nurse Practitioner measured me I measured like I was 35 weeks.  WOAH!  No wonder why I felt so huge.  She did a quick ultrasound and it showed I had excessive fluid, also known as Polyhydramnios.

Week 30

Week 33

This is the last picture I took during this pregnancy.  I took it in a Home Depot bathroom.  I was at Home Depot with Emmett and we were walking down an aisle and this man sitting at the front of the store tapped his friend and pointed at me.  I am pretty sure he was pointing at me, because there was nobody else in the aisle.  It really didn’t bother me, yeah I thought how rude.  Emmett needed to go to the bathroom so I took him and as we walked in I looked in the mirror.  WOAH!  I looked liked I might have that baby in the store, I felt like it too.

I had another ultrasound by the tech to make sure that things were ok, to measure my amniotic fluid, and double check that I wasn’t having twins.  Ok, maybe not that last part, but I definitely questioned it.  At this appointment I asked my Doctor if I should have concerns with the excessive fluid and see a High Risk OB.  He said no, since all my tests I had done previously looked good.  He measured my belly one last time and I measured 47 weeks.  What, 47 weeks!!  I told him I didn’t think my belly could get any bigger and he assured me that it could and compared me to patients who were carrying twins.  I reminded him that was not funny and that I only had one baby.

I ended up back in his office Friday of that same week because I was having contractions.  He gave me a shot to help the baby’s lungs if I went into labor early.  I went back in on Monday to get the second dose of the shot.  And then that Friday, which was the 13th, my water broke.  To read about Isaac’s birth go here.

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PICU….Round 3

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Poor sweet Isaac.  He’s back in the PICU.  He had been working harder to breathe the past couple days.  We had been giving him albuterol treatments and up until Saturday night it seemed like it was really helping.  We decided to take him to the Urgent Care at the Children’s Hospital South Campus Sunday morning.  They could have probably admitted him at that campus and treated him there, but because of his history they would rather him be in the PICU at the main campus.  So, he was transported by the Flight for Life team, ground transport, to the Main Campus.  We are getting far too familiar with the Flight for Life team.
He has been put on BiPap, is on antibiotics, and tested positive for rhinovirus (common cold).  Sunday night was a very rough night in the PICU.  It seemed like he complained the whole night.  He definitely was missing his bottles, which is what gives him comfort.  He does not take a pacifier, so no help there.  They put in a feeding tube today.  I am hoping he will be able to have breaks from the BiPap mask and be able to take bottles during those breaks.
Of course he would get sick now as he was scheduled for his first Cranial Vault surgery this Thursday.  His surgery has been cancelled and hopefully will be rescheduled within the next month.

This was when we arrived at his room in the PICU

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Isaac’s First Hospital Stay

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I realized I never posted about Isaac’s first hospital stay in December.

On December 11, I was sitting on the couch giving Isaac a bottle, he was finished so he pushed it out and then stopped breathing. No gasping, choking, just stopped breathing. It was probably at least a minute. I picked him up, then placed him on his back, picked him back up and flipped him over and patted his back. He was kind of stiff, had turned blue / purple, and then he was back to his normal self like nothing happened. I called 911 as I was pretty freaked out. I have had him stop breathing for maybe 10 seconds, but nothing this long.  Emmett was home with me and he came over and was watching me.  He looked at me calmly and asked,”Is Isaac dead?”  “No, Isaac is not dead,” I responded.  I could only imagine how scary it must of been for Emmett.  However, when our whole downstairs was filled with police, firefighters and paramedics he was like WOW!  Zane was out east working and I had called him and told him what was going on and he immediately came home.

Since Isaac was stable and showed no signs of distress we were able to drive him to the ER at the Children’s Hospital South Campus.  The ER Doctor wanted us to hang out so they could observe him and see if he may need a CT scan.  So, we hung out in one of the rooms.  Zane left to take Emmett to preschool.  During that time I gave Isaac another bottle and he did the exact same thing that he did at home. I was glad that the medical staff was able to see the same thing I did.  The nurse had come in the room right before it happened.  I laid him down on the bed and she put the blow by oxygen mask on him.  His oxygen saturation had dropped into the 60’s and wasn’t really coming back up.  So she scooped him up and took him into one of the larger trauma rooms.  They gave him an IV, got him hooked up to oxygen and the ER Doctor ordered a CT Scan.  The scan looked good showing no fluid build up, which was the ER Doctor’s concern. He was transfered to the PICU at the main Children’s Hospital Campus. They tested him for RSV, which all came back negative.
   

Asleep in Daddy’s arms.  This was the best way to keep him relaxed.  He just wanted a bottle at this point.


He ended up having two more episodes that evening in the PICU, one not following a feed.  He was then no longer allowed to have a bottle.  They put a feeding tube in and continued to keep watching him.  After a couple days he moved out of the PICU and onto the 9th floor, which is Pulmonary.  He had a barium swallow test done and an upper GI test done, which all looked good.  So, ultimately no one knows why he stopped breathing that day.  It’s a bit frustrating to not know, but we also realize that there are probably going to be many times that we do not have clear answer as to why things happen in this medical journey of Isaacs.  He is on reflux meds now, twice a day.  I was definitely nervous every time I feed him after that, but he hasn’t done it since.

Isaac checking out a new toy he received from new friends!

Isaac’s favorite thing, pulling his nasal cannula out and licking it.
They put these restraints on Isaac to get him to stop pulling his cannula out! Ha!

  

He wasn’t going to let those restraints stop him.

 Our Elf, Buddy, made a visit to the hospital to see Isaac.  The kids were unable to go see Isaac at the hospital due to visitor restrictions, so they were excited to see Buddy made it.

Since it was the month of December Isaac had a few visitors in the hospital.  The Colorado Avalanche were there handing out toys to patients one of the days he was there.  Our picture was on the news and on the Avalanche Facebook page.

This boy was so happy to get his bottle back.  He refused to let it go.

 This was the day police men (Cops 4 Cancer) came to hand out toys to patients at the hospital.  I happened to have gone downstairs to get something to eat when they were marching in the hospital.

Visit from a Christmas Bear.

And finally we were discharged after a week in the hospital.







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It’s a good day!

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Isaac has had some really good days!  Yesterday they had him off oxygen several times and today he was off oxygen all day.  Last night they had him on CPAP and tonight he will just be on the nasal cannula.
If the nights goes well, he should be able to come home tomorrow or Saturday.
I was able to take a selfie of us and got him smiling.  Oh I love that face!!
And I can’t help but take pictures of him sleeping!