Sunday, June 19, 2016

Father's Day

When you get married, you generally know a lot about that person. And, you have a pretty good idea about how they will be as your spouse. But, you really have no idea how they will be as a parent. It can be easy to speculate about how they will be based on their character and personality. Maybe they have even been around small children quite a bit. 

Until that baby is placed into their arms for the first time though, you know very little about how your partner will parent. And, it's for life. Because, as I am realizing, this parenting gig never ends. 

Not only was I blessed with an amazing husband to partner with, but my girls were blessed with an incredible father. From the moment our oldest was placed into his arms and I saw him tear up, I knew that I had the right person by my side. There truly could not be a better father out there to parent our three girls. Through his love, patience, calm spirit and creative mind, these are just some of the ways that he is able meet the diverse needs of our children. 

Like any father, he will do anything to protect and provide. These past few months he has proven that to our family again and again. He has done anything that I have needed of him, without complaint. (Well, sometimes he would grumble at the $5 hospital coffees...but he would still get them for me anyway!) He covers our girls with love, affirmation and affection daily. He has shown a selfless and pure love to me in so many different ways over the years, but especially these past few months.  For both of these things, I am beyond grateful. 

I could go on and on, but in the interest of brevity, I will attempt to wrap this post up.

However, I would be remiss if I did not mention my own father and father-in-law. Both of these men are remarkable fathers, and continue to show our family love on a constant basis. Our immediate family would not be the same without either of them. Grandpa and Papa, thank you for everything that you have given to us and our girls. Our family is better because of you!

When you get married, you never think that the "for worse" ends up looking like cancer. Especially to your child. Throughout Ellie's diagnosis, Mike has been amazing. There is nobody else in the world that I would want by my side right now.

My Precious, thank you for everything that you do for our family. I love you.

Thursday, June 16, 2016

What is a port?

Before Ellie was diagnosed with ALL, I was very ignorant about leukemia, pediatric cancer, and all of the things that goes on in this world. Of the many things that I did not know about, one was a port. I had no idea what it was or how it was used. And while I have not had to personally access it, I do feel like I am becoming an expert on the matter. Let me share my vast knowledge with you. 

Spoiler Alert: My knowledge is not vast. This post is not technical. At all. But, it's heavy on pictures.

Before the port, Ellie's chest looked perfectly normal. Even now, with the port in place, it still looks pretty normal. This picture shows what the port area of her chest looks like when it is not accessed. The scar shows where the port was initially put in through surgery. Directly beneath the scar, there are a couple of small red bumps. There, under the skin, is where Ellie's port will remain for the next 2+ years. 

Here is what everything looked like immediately after surgery to place the port. I don't fully understand the technical nuances of it, but I know that the artery used for the port was accessed through her neck. This is why that one vein is more noticeable in the picture below. That discoloring has now gone away. 

Each time Ellie visits the clinic or day hospital (different procedures at both) her port is accessed. About an hour or two beforehand, I put a numbing cream over the area. It is then covered with plastic wrap to help it sink in. To be honest, I have no idea how much it actually numbs the area, but it cannot hurt.

Once it is numb, and the medicine is ready to be administered, the area is cleaned. Then, a small needle is poked through her skin, directly into the port. This is the not so fun part of everything. It's really the cleaning that Ellie hates more than anything else, because it lasts so long. The needle prick is short. She does cry this entire time, but once it is over she recovers extremely quick. Usually within a minute or two.

It is then covered with tape to keep secure and clean.

From that point on, it can be capped off, and Ellie can freely move around. Or, it can be hooked up to an IV to receive blood, chemo, or anything else Ellie might need. 

Once Ellie is done for the day, then all of the gauze and tape is removed, and the needle pops out very quickly. A small band aid is all she needs. 

So, that's it. There's nothing continually hanging from her body. Nothing really noticeable at all, except for a very small, subtle bump. Ellie is still very sensitive about the entire area, so I have yet to really feel the port beneath her skin. 

When Ellie is completely done with treatment (August 2018?), she will have another surgery to remove the port. From then on, the only reminder of the Leukemia will be the small scars on her neck and chest.

Wednesday, June 15, 2016

Interim Maintenance Road Map

Ellie has entered a new phase of treatment. While somewhat less "busy", it still has it's share of potential difficulties. The pros are that Ellis is no longer on a daily chemo drug and we only have to visit the clinic every ten days for her to receive treatment. The potential cons are that the treatment escalates, meaning that every time she goes in, she gets more chemo than the previous visit. And, she has to get another lumbar puncture on Day 31. If her blood counts show that her body is not handling the chemo well, then further treatment can be delayed. This phase runs for 56 days, but could potentially last longer.

Here is what Ellie will be receiving for the next two months:
Days 1, 11, 21, 31 & 41: Vincristine via IV port
Days 1, 11, 21, 31 & 41: Methotrexate via IV port
Day 31: Methotrexate via LP

So yes, there is about a two week lull of treatment at the end. The next phase that Ellie will enter is really intense treatment, so I assume that this time off is to give her body a break before hitting the chemo and steroids really hard. That will be in August and September, and I will post all about it as Ellie enters that phase.

Please pray that Ellie handles this escalating treatment well. As always, there are short term and long term side effects that we are praying against. Nausea, vomiting, mouth sores, ulcers, infections, etc... All of these are very common side effects to get at this stage. We are so thankful that Ellie has not seemed to develop any of these so far. Please join us in praying and believing that she will not have to experience them.

Waiting at the clinic before heading to the infusion center to receive chemo. 

Spinning in the hallway seems like a good idea.

Thursday, June 9, 2016

The Past 2 Weeks

It has been nice having the past couple of weeks off from any doctor/hospital visits. I figured I would let you know how Ellie is doing by letting you know what we've been up to as a family.

Every year over Memorial Day weekend we visit Madeira Beach to celebrate Michael & Stephen's birthday. (Yup, Mike is a twin.) Only this year Stephen couldn't make it because he and Andrea were in South Africa diving with great white sharks! I know! While they were off doing that, we were avoiding the sharks lurking around John's Pass. It's practically the same thing....

We visited the beach that Sunday, and Ellie had a great time! She was able to move around much better this time, which made the entire experience easier for everyone. Especially her. She loved playing in the sand, and even braved the water a few times.

Eva and Nora wear goggles, therefore Ellie must wear goggles.

The following Sunday we visited Quantum Leap Farm for a family fun day hosted locally by 1Voice Foundation. It was amazing! The girls LOVED it, and Mike and I were so impressed with both organizations and everything that they did to make sure our family had fun. There was food, arts and crafts, face painting, glitter tattoos, horse painting (yes, you read that right), horse riding and games. It was so hot, and ended up raining towards the end, but still a lot of fun. All of the girls have already asked when we can go back. 

If you get a chance, I definitely recommend clicking on the links above to learn more about these local organizations that are helping families like ours. It was hard to make the decision to go to this event. Doing anything "cancer" related on a social level only seems to confirm that status. It's a tough hurdle to mentally overcome. But, I am so glad that we did because all three girls enjoyed the day immensely.

Those cheeks!

She looks so tiny here...

...and so big here. 

A huge THANK YOU to 1Voice Foundation and Quantum Leap Farm. We had a wonderful time and cannot wait to return.

And, finally....
Sorry sea creatures. Horses are now the new favorite animal for the York girls. If you know our girls, then you know that this is unprecedented.