A Love/Hate Relationship...

I have a LOVE/HATE relationship with chemotherapy... And right now I REALLY, REALLY hate it! This drug is going to get rid of a tumor that is damaging my baby girls sight and I am so grateful it is around...

... BUT damn it, as a mother, I hate what it is doing to my sweet baby. This weekend was by far the toughest weekend I have had as a mother. Rylie had a really rough weekend. She was pretty much miserable all weekend. A nasty side effect from chemotherapy is mouth sores and my pore girls mouth is just killing her. Between her port site still being really sore and tender and the mouth sores she was so sad all weekend. To have you baby begging you to take away her pain is the worst feeling in the world. How do you explain to a toddler that they have to be sick to get better? That the doctors have to make her hurt to make her better? They were questions I never thought I would have to answer and they are by far one of the hardest obstacles we are trying to over come. This is undoubtably the hardest thing i have ever had to experience in my entire life and i know we will make it through this year stronger and better people but it sure is tough... I hate that my baby's life is forever changing. She can no longer play with her friends without having her parents hovering over her like she is about to catch the next runny nose and there for an almost certain trip to the hospital. She can no longer eat and McDonald's like every kids loves to do. Everything is changing... it's a hard pill to swallow when all you want is for everything to be back to normal...

Chemotherapy- Course 1.1

On May 14, 2014 we headed back up to Primary Children's Hospital to get Rylie's first follow-up dose of Vincristine. This was the first time her port was going to be accessed while she was awake so we were a little afraid of how she was going to react. She has been very cautious about showing people, adults mainly, her port and she is super sensitive about people wanting to look at it. When we explained all of that to the nurse up in oncology she decided we needed to spend some time with a Child Life Specialist so Rylie would not be so scared and anxious. 

So Rylie got to play doctor with her baby...

She got to color...

We took lots of selfies (She loves to look at pictures of "Rylie")

Ate lots of cookies...

Played with some medical supplies and tried to get use to the idea that like it or not were going to have to get familiar with them... (She is NOT a fan of the masks)

And of course we had to play restaurant while we waited for the pharmacy to bring up her chemotherapy. 



She did really well with her second dose. We were in and out of there in about 3hours (pretty short since we average on the side of 4+ hours). This chemo is pretty mild so we did not have any immediate side effects, just some exhaustion. 

Unfortunately by about saturday her blood counts were low and we started to get a glimpse of just what our year was going to look like. Up until that point Rylie has did very little complaining. But Saturday you could just tell she was miserable. Saturday night she started complaining her mouth her, that's when we noticed all of the mouth sores. The poor little thing was just covered in sores. We tried everything we could to help her get comfortable but nothing seemed to help. he just wasn't feeling well and who could blame her.  She also started to run a fever which made for a long night of worry. Finally by Sunday night we were able to get her "comfortable" enough to get some sleep. 

It was our first smack in the face as to just how much our lives have to change. Brett and I have always been "on the Go" type people and Rylie has always been right there along side of us. She pretty much goes every where with us... if we can't take Rylie we typically don't go. She has always been right there with us and this weekend it became incredibly clear that her little body just can't keep up anymore. You know, I have sat here for months wondering why this is happening to us... and after a good long cry last night it has become apparent to me this is a lesson in slowing down and enjoying the little things... a lesson I really needed to learn

Chemotherapy- Course 1.0

The morning of May 8, 2014 at just before 9am Rylie received her first round of Chemotherapy. The entire process took about 6 hours so of course she needed all her favorites...Toby, Baby, Minnie Mouse, and Daddy! 

The entire process took about 6 hours. First up she received her first does of Vincristine. This is the "easy" drug. Just a quick shot and were good to go. Because of the port Rylie felt nothing at all and just snuggled up with daddy and watched Frozen. 

Next up she started her Carboplatin. That one is the doozy! It takes about 1 hour and 15 minutes for her to received and then after that she gets 4 hours of IV Fluids to make sure her kidneys are flushed out and working properly. This is also the drug that causes us the most stress... this one makes her sick, can give her problems with her kidneys, and just plain ol' sucks! She handled things really well. The nurses were very proactive and great with starting her on Zofran before we started chemo so she didn't get sick just suffered from a bit of nausea and exhaustion. Luckily, she was still pretty drugged up from surgery so she just kind of laid there and took everything in stride. I think Brett and I mentally prepared for some graphic scene like you see in the movies but that just was not the case. I mean she wasn't feeling great but I think the nurses try and do their best to make sure the kiddos are as comfortable as possible before they start. We were blessed with some really sweet nurses so that definitely helped the process! 

After just over 48 hours in the hospital Rylie's first round of treatment was complete! She did it! She made it through like a rock star! 

Getting her port de-accessed so we can head home!

Then we were sent home with this... our chemotherapy bible. A book FULL of information (All of which they quizzed us on before we left the hospital)! We were sent home to read, review, and re-read all the materials and make sure we are prepared to live the next 12 months in complete and total fear...

NO Groups of 10 or More

NO fast food restaurants 

NO Soda Fountains

NO public places

Oh yea, and then there is the massive amounts of medications and medical supplies to keep track of...



It's a lot to get use to and were having to make a lot of changes around the house but we are slowly getting there, one day at a time, one foot in front of the other. 

Port Placement Surgery

May 7th, "D" day. The day we have dreaded for months...

We asked to wait to start chemo until after Rylie's birthday because we wanted her to be able to enjoy her special day. It's was wonderful to wait so we could enjoy some family time but once Rylie's birthday came and went the anxiety of what we were about to embark on really set in. I don’t think Brett and I slept Tuesday night… it was scary knowing what we were about to do. So many questions and not enough answers. We were putting our Baby girls well being in the hands of others and we just had to have faith that they would do everything they needed to do to help get rid of this tumor!

On Wednesday, May 7th we checked into Primary Children's Hospital to start our 12-month chemotherapy treatment protocol. First up was Rylie's Port Placement Surgery. In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick". Ports are used mostly to treat hematology and oncology patients, The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free. Children who are getting chemotherapy typically get a port placed. This allows the kiddos to get their meds without having to get poked so many times- a small little win in the battle of killing this tumor. 

Surgery was scheduled for 1:30pm so we checked into the hospital at noon to start Rylie's pre op tests. She is a little rockstar. It's amazing at two years old how she knows when we go to the doctors, they will check her weight, then her height  and then her blood pressure. she just hopes right up to where she needs to be and to work the nurses go. It is definitely a proud moment to see your baby so well behaved... but so heart breaking... what two year old knows this kind of drill...

a little play time before our pre-op tests.

We ended up getting delayed about 2 hours. Rylie was AMAZING. She had to stop eating and drinking at midnight the night before so after a light snack  at 7pm she had gone all day with nothing to eat or drink! She was so sweet, she would ask us for a drink or a snack and when we would tell her she had to wait she would ever so sweetly say “okay Mama” and go back to playing. Broke my heart. The strength of this little girl amazes me! Best part about being delayed... we got to play... lots! They have lots of fun toys up in Pre-Op and I am pretty sure Rylie touched every single one of them! We played in the kitchen, rode every car they had, and even took a nice long nap in the wagon! 

Rylie’s surgery went really well. They did have some trouble getting the port placed exactly how they wanted but it was nothing too concerning… just means Rylie’s will have some extra pain and discomfort while she is getting use to the port. This was my first break down of the week. Brett and I had agreed to participate in a study the University of Utah and The Huntsman Cancer Institute are doing to better understand all of the tumors children get which will help the researchers at the new Pediatric Oncology Unit at Huntsman Cancer Institute learn new and better ways to treat tumors so when we got the call Rylie was in recovery Brett was still in the process of getting his blood drawn so I went in alone to see her. It was the worst feeling i have ever experienced. There she lay, pale and moaning on a table. Tears just streamed down my face. It felt like eternity before Brett got there but thankfully he got there just in time to help me gather myself so we could get Rylie settled into her room for the night. 

Once she was out of recovery we were headed to our room up in the inpatient oncology department. Because surgery was delayed a few hours they decided to let Rylie rest for the night and start chemo the following morning, which was a great call. So we snuggled up and settled in for the night. 

The best part of the night... We got a visit from Otis, the service dog. Otis is a Great Dane-Saint Bernard mix so to say he was HUGE is an understatement. The pictures just do not do him justice.  Rylie LOVES dogs so it was nice of them to think of her and stop by, she was still a little out of it but she held on to the picture of Otis the rest of the time we spent in the hospital so I am pretty sure she enjoyed the visit. 

In the morning Rylie snuggled up with daddy and had some Breakfast in bed before we got started on her first round of chemotherapy...

Happy 2nd Birthday Ladybug!

Rylie turned 2 on May 5th. We were scheduled to start chemo on May 7th and we are not allowed to be in groups of 10 or more so we had a couple quiet dinners with our families and of course we celebrated on Monday with a super fun family night on the town! 

Miss Rylie was completely spoiled! She is in complete heaven with all her new toys! We have been playing lots of dress up, reading lots of books, and of course playing “restaurant” with her new kitchen!

Happy Birthday to the strongest 2 year old we have ever know!

Love you LadyBug!!!