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...