Author Archives: eagar4life

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There is a Finish Line!

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Last Friday I went in for a scan.  My Oncologist decided to have me do scans before my last round so that I can have my ports taken out soon after I’m done with my last treatment.  I was a little nervous of how the outcome would be.  I am so happy to say I received a call back that my scans were clean!  Hallelujah!!  Many prayers have been answered!  We are so thankful for all the outpouring of love and support we have been shown!!!

  

Today I am starting my last round/cycle of chemo.  So, next week I should be having my last treatment.  What a relief to be coming to an end.  Each week of chemo has brought its challenges.  About halfway through my abdominal port leaked after treatment.  I went back to see the radiologist who put the port in.  He checked the port by injecting a dye in while I was under X-ray.  The port turned out to be fine, no kinks or leaks within the catheter.  Thank goodness.

After the first treatment of my 5th round I had the worst nausea and could not hold anything down for a couple days.  I couldn’t even keep my anti nausea meds down to help.  That was probably the worst week I have had since starting treatment.  By that Friday I was finally able to keep food down.  Thank goodness for my Mom, who came to the rescue to tend to me and help with the kids!  Sure do Love her!

The following treatment came with excitement as well.  I slept through quite a bit of it, but when I was done I got up to go to the restroom and felt off.  I looked at my abdomen in the mirror and realized it was lopsided.  All the chemo and saline was all on the right side of my abdomen.  Ahhh, what the heck.  I showed the nurse, who didn’t seem to concerned at first but then told me to call my Oncologist if I had any problems.  She was definitely concerned, because she called my Oncologists office the remainder of the week to see if I had called in.  A few days after chemo I got a rash on the right side of my abdomen.  I assumed it would go away quickly.  Well, it was still bothering me after the weekend, so I went in to see my Oncologist.  She thought it looked like a contact dermatitis, but her Nurse Practitioner was concerned it could be shingles.  What???  That I do not need in my life at this point.  We kept an eye on it, I took allergy meds, and the rash got better each day.

  
I received this amazingly beautiful quilt from some good friends!!  What a thoughtful gift that will be treasured for a long time!  Thank you Carla, Amber, and Megan!  

 I love checking the mail and getting motivating cards, letters, and drawings!  Thank you!!!

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Over The Hump!

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This past Tuesday I had my second treatment of my 4th round.  I officially have 2 rounds left.  I should be done with my last treatment at the end of September.

After my 3rd round it still felt like I had a long way to go to see then end of treatment.  Now that my 4th round is over it feels so good to be past halfway.  The first treatment of each round is usually the worse, I just feel worse after the first treatment.  For the most part I have the nausea under control.  My stomach usually just hurts a few days after and there is not much relief.  Food doesn’t taste the same.  I have also felt pins and needles in my hands and feet, and in my face sometimes.  The second treatment is a bit easier to take and my week off also follows it.

My blood counts have been good throughout treatment.  The only things that fluctuate are my Magnesium and Potassium.  All in all I have been doing well going through chemotherapy.

I did go in to see my primary Doctor about my thyroid.  She sent me to have an ultrasound done, which showed a small nodule on the right side.  So, my Doctor sent me in to have a thyroid biopsy done.  The first time I went in to have it done, the Radiologist that was to do it was looking at my ultrasound and felt that the nodule was so small that it would be nothing to worry about.  They decided not to make my neck a pin cushion and sent me on my way.  Well, my primary Doctor really wanted me to have the biopsy done, so I was back a few weeks later and this time the biopsy was completed.  I am happy to say that the results came back benign.

Chemo

Zane and I at my first treatment of my 4th round!

I was trying on hats at my last chemo treatment!  I mostly just go bald, but my nurse kept insisting I look at their box of hats.

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Isaac has been doing great.  There was a concern a few weeks after we brought him home.  Part of his incision had opened up and the surgeons were concerned that it wouldn’t heal on its own.  They had contemplated going back in and closing it up and possibly taking out the plate that was in that area.  They decided to give him another week to see if his body would heal up and avoid another surgery.  Well, he must not want to go into surgery because the incision healed and the following week we were in they were able to remove the stitches.  He does still have his Broviac Line and is still getting heavy antibiotics every night infused through the line.  He will continue with the infusion antibiotics until his next surgery.  He will be having surgery on his palate and his first finger release in about a month or two.  We are still waiting to hear from the scheduler on a date.

Isaac loves to play the iPad or iPhone.  His favorite is to play the piano app.  He is great at sitting up.  He loves toys that spin.  He is working on crawling.  We bribe him with the iPad and he will work his way to it, in an army crawl his own style.  You never realize how much you take your kids milestones for granted until you have a child that all these milestones are a BIG deal.  Well, Isaac, he is a bit of a BIG deal around here.

Capes

Super Isaac and his sweet friend Super Avah flying over Children’s Hospital!

The Craniofacial department has a camera that takes a 3D picture.  These next two pictures show a comparison of Isaac’s head from the beginning of May, before his last surgery.  The pictures on the right are from May and the pictures on the left are from a few weeks ago.  You can really tell a difference in the shape of his head.

head3d head3da

swing

He loved this swing! He fell asleep while he was in it!

pianist pianopad

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Home 

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Isaac came home Monday night!  I should have posted this already.

He had surgery on Sunday.  The surgeon went back in and cleaned up the infection in his head.  It went well and he was able to come home Monday evening.  He is on an IV antibiotic, which means every night we administer his antibiotic medicine through his Broviac line.  It has made life much easier for him to be home.

This was my off week of chemotherapy!  It has been very nice.  I still have the weird head feeling, which hasn’t been figured out, but I was on top of the nausea this time.

  

Working on his escape plan

  

Snoozing at home!

 

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A Month of Chemo and 13 Days Post Surgery

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I started chemo a month ago.  I have made it through a third of my treatments, 2 rounds, 4 treatments.  And let me tell you it is not anything I could of imagined.   This past week has been rough, I’ve had a lot of nausea, body aches, and I miss my family being under one roof.  Some days I can’t help but think, “why?  Why now?  Why me?  Why our family?”.  Then I cry for a minute or two, if it’s any longer I get a headache and I don’t want to get dehydrated so I have to stop.  What I do know is that We will come out stronger, and with more love for each other and this life.   I am especially grateful for my Mom, my Brother and his wife, who have been able to help out so much, especially with the kids this past week.

Today has been a better day and I am hoping it will continue throughout the week.  I am so glad I get next week off.  One of my concerns this week was that my blood counts would be too low.  The only thing in my chemistry that was low today was my potassium, which means they gave me potassium through my IV port before administering chemo.  I was able to sleep again for a little bit, so that was nice to help pass some time.  While I was in treatment a lady, who came in for chemo could not receive it today because her counts were too low.  I wanted so bad to go give her a hug, you could just see how disappointed she was.  I have to remember, it happens and that could be me one of these days.

Now on to this sweet little guy  

He is still in the hospital.  He is fighting an infection and continues to spike fevers, he also tested positive for the rhino virus.  He had a Broviac cathether placed last week.  This is a central venous catheter that accesses the large vein that enters the heart.  They are using this to administer his medications.  Zane is being trained on the care and use of the line as he will have it when he does finally come home.  Zane sent me these pictures of him after the procedure was done.

   
 

He is still happy and plays with his toys.  Of course, he does pay attention to the door when nurses and Doctors come in.  He knows that is the way out!  Isaac is a fighter and he’ll get there, it’s just taking more time.

 

Thank you for all the sweet cheer cards, Zane has hung them all up in Isaac’s room!  Thanks to our amazing friend for taking the time to spend with Isaac at the hospital so Zane could come home and get some rest.  Zane knows he doesn’t have to be there ALL the time, but he knows what works best for this guy!

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Chemotherapy Day 22

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Today is my 22nd day since starting chemotherapy.  Today was the first treatment in round 2.  I started out by seeing my Oncologist, who said everything is going well.  We headed upstairs to the infusion center to check in and find a recliner.  After getting settled I checked my phone to see a ton of notifications on Facebook.  What an awesome surprise to see my family wearing shirts to support me!  The first post I saw was of mis Abuelos, as I was being hooked up for treatment, and of course I teared up and laughed!  Then, I scrolled through and saw ALL the pictures.  You guys are the best!  I couldn’t have a better family, LOVE you guys so much!

I am lucky and very thankful to have my brother, Kurt, and my sister in law in town this week.  Kurt came with me to chemotherapy today and Shar entertained the kids.

I was able to sleep for quite a bit, so that made it easier.  I weighed myself before I left and I had gained 6.2 lbs from all the drugs and fluid.  When I woke up, I used the restroom, and when I sat back down I looked up to see this sweet smile come in the room!  Love you Angie!!



Here is my family sporting their shirts in support!!  I know these pictures are on Facebook, but I wanted them to be all in one place that I can look at.  Thank you Shar for doing the shirts.  I am just missing a picture of David & Jamie and my parents, who have been busy moving out of their condo to a house close by.

Don’t worry, we are coming up with the best way for everyone to get their own shirt, just working out the details!

The kids hanging with their Aunt Shar

Zane is normally my partner at chemotherapy, but is Isaac’s partner at the hospital. Love you to death, too!

 

This sweet boy is still having fevers and they are running more tests to try to find out what is causing it.  If you want to do something you can send Isaac a cheer card, just click on his picture above.

 

Kurt, Shar and Kai!

Absolutely love seeing these two! Abuelo looking good in his mohawk!

Aunt Lynne and Winston

  

Alicia and Adrianna

My aunt Cristina and cousin Deana

 

Joseph, Sarah, Adrianna, and Alicia

The newest addition to the Terry family!!

  

David, Jamie, and Matthew

 

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Surgery Recovery

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I was hoping that yesterday we would be bringing Isaac home from this surgery, but his recovery from surgery has been a bit rough on him this time.  His JP drain was taken out Saturday morning and he did move from the PICU to the general floor early Saturday evening.  When he got to the general floor he was running a fever, so they took cultures to be tested to see if he might be getting an infection.  His incision was bleeding more then the Doctors liked, so they were going to keep an eye on it overnight.  Isaac had a bit of a rough Saturday night, waking up moaning and crying whenever he was touched.  He is not keeping all his feeds down.  All his IV’s have been taken out, because he moves around too much.  The Doctor put more stitches in Isaac’s incision on Sunday to help with the bleeding.  Isaac was running a fever once again last night.  Nothing from the cultures, so a chest X-ray was taken not too long ago.  The Doctor told Zane that Isaac needs to be fever free for 24 hours before they even think about sending him home.  He was running a fever earlier today, but it is going down and he has been up and playing.

I did take the kids to the hospital on Saturday so they could see him.

The vending machine sure got their attention

Zane has been spending his time at the hospital with Isaac.  It breaks my heart to hear of his struggles and not be there with him, but the hospital is not exactly the place I need to be hanging out at.  Zane has been great to send me pictures of him, so here are a few of them.

This picture is from Sunday


Sleeping in Daddy’s arms!

Sitting up and playing this afternoon!

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A Year Ago

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We brought Isaac home from the NICU after he was born exactly a year ago.  I have been meaning to post Isaac’s time in the NICU for the last several months.  I figured now is as good as time as any.  Isaac was in the NICU (Neonatal Intensive Care Unit) for 15 days after he was born.  We weren’t quite sure how long he would have to be there.  Honestly, I was expecting it to be longer then 15 days.  Those days in the NICU were long, especially not knowing exactly when he could go home.  Isaac showed great improvement each day and his nurses that he had were awesome.  Isaac is definitely a fighter!!  This is a picture I took of him when he was a month old!

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The rest of this post is pictures of Isaac’s time in the NICU.  Looking back at these pictures makes me miss those early weeks!  So far each stage of life has it’s ups and downs, but there is just something about those first few weeks that is so special.

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This picture shows how tiny this boy was. That is a two ounce bottle.

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Isaac’s nurses loved styling his hair after his baths.

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0438 Emmett loves his brother. He loves to be close to him, sometimes a little too much.

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June 29, 2014 Isaac was discharged from NICU!!

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Two of his amazing nurses!

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Home sweet home.

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Hair Today, Gone Tomorrow….

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Isaac Update:

He is still in the PICU.  The breathing tube was taken out earlier today.  They also took out 2 of the five, yes you read that right five, IV’s.  He has been doing great.  Zane was able to hold him today.  He was able to have bottles throughout the day, which always brightens his mood.  He was given a blood transfusion this evening, which is the main reason he was kept in the PICU. 

Before I left the hospital last night we told the nurse that Isaac is strong willed and does not appreciate tubes or masks on his face, so if he stirs or wakes he may try to go for the breathing tube.  This made her nervous, so she decided to restrain his arms just in case.  They did continue to give him morphine throughout the evening to keep him calm.

This morning Zane told me that the nurse caught Isaac trying to pull his breathing tube out with his feet.

 Zane sent me these pictures.  The first two are from last night and the third one is from today.  
   

On a lighter note Zane came home to give me a new style today.  I thought I was going to get emotional when he started shaving my head, but it was easier then expected.  It does throw me off when I walk into the bathroom and see my new reflection.  The mohawk was shaved off after we took pictures.

I was trying to be serious!!

 

   

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Surgery Update

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Isaac is done with surgery.  The Doctors said everything went well.  They brought his brow bone forward about 1.5 cm..  He did end up needing quite a bit of fluids and his blood pressure dropped a few times during surgery.  The Anesthesiologist kept his breathing tube in, to help him clear out any fluid that may have built up.  So, he will be spending the night in the PICU.

Here are a few pictures Prior to surgery that I forgot to put on the previous post.

Parents waiting to take Isaac to the OR. Isaac looks like he’s reading his surgery passport.

  
  

Here he is in the PICU resting.  If everything goes well tonight the breathing tube will be removed tomorrow and he should move up to the general floor.

The bulb you see next to his head is a drain that will help with his swelling.

  

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Cranial Surgery #2

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We are at Children’s Hospital today for Isaac’s surgery.  He is having his posterior distractors removed and a frontal/orbital advancement to correct his bilateral coronal craniostynosis.  Whew! So, what exactly does that mean?  Well, they will first remove the hardware in his head that was placed to do his posterior distraction.  They will then cut and remove his frontal bone to reshape it and create a brow bone for eye protection.  They will adjust his eyes a little if possible.  Finally, they will hold the work together with hardware that is absorbable.  It may take a year to eighteen months for his body to fully absorb them.

This is kind of bittersweet, as Isaac’s look will change with this surgery.  I took pictures of him yesterday, to have before pictures!  This boy is the highlight of our day, he is so content to play on the floor and roll around.  He smiles and chuckles at nothing in particular (he must find his thoughts comical), he is quite ticklish in his legs, and he loves to laugh for Zane.  Isaac is Amazing!!

Isaac was supposed to go back for surgery at 11:30, but because of delays he did not go back to the OR until after 1:30.  Since Isaac is 12 months we were able to carry him back to the OR and lay him on the operating table.  We had to give him our goodbyes and kisses before they put him under, but we were excited that we were able to take him back.  I expected it to be harder to leave him, but he didn’t fuss or put up a stink.  It’s like he was saying, “go, I’ve got this and I’ll be taken care of.”

We received a call from the nurse around 4pm to let us know that it took a bit longer to get all his lines and prep work done prior to the actual operation.  So, surgery started about 3:30.  They had scheduled his surgery for 6 hours, so we may be waiting a while.

Here are a few of the pictures I took yesterday!

   
        

Clearly he was over his photo shoot