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.

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.

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.

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.

Ellie's Haircut

The big haircut happened on Wednesday, and as promised, here are some pictures.

To remind you of where she began, here is a picture of Ellie on the day we first went into the hospital, less than 2 months ago.

Ellie's hair was finally beginning to grow and get some fullness!

This is what it looked like before we got it cut on Wednesday.

I know, it's difficult to really see around the fairy wings,
but this is the only picture I have of the back of her head.

And yes, for those of you that have noticed,
the CAST production of Peter Pan Jr. runs daily in our home.

The following pictures, just before she got her hair cut, really show the "wispy-ness" of her hair.

She was being so goofy and had such a good attitude the entire time. 

At first, we tried for a short bob. I did not take a picture. Suffice it to say, it looked really bad. So, a pixie cut it is!

I was only able to get this perfect profile shot because
she was being spicy and refused to look at me.

Yes, Ellie's clothes are about to get infinitely cuter, and more bows/headbands will be purchased. But, we think she looks adorable! Her hair looks so much better now, and it just reminds me of when she was a baby. Since she is our last, I will gladly take this walk down memory lane. To be quite honest, one of my favorite areas to kiss my babies is on the back of their neck. Once they start growing in hair though, that goes away. So, the silver lining to Ellie losing her hair is that I get another chance to kiss that sweet spot. 

It will continue to thin out, and once she reaches the Delayed Intensification phase of treatment in August, it will likely all fall out. Another cut/shave is in her future, but for now, this will do just fine. 

Oh, and can I say that this has just kind of been a big pain. Honestly, I never really thought about it before, but aside from the emotions that go along with it, hair loss is just annoying. I feel like there is hair all over our house, and Ellie did not even have that much hair to begin with. So not only does Ellie's hair cut look better, but we also won't have to deal with stray hairs everywhere.

Ok. Now onto her recent treatments.

Ellie's third and final lumbar puncture for her Consolidation phase was yesterday, and all went well. She will not have another LP for several weeks. I am not exactly sure when it is, I just know that it is far enough away that I do not need to think about it right now. And that, is a good thing. The days are really quite easy, but goodness are they exhausting.

At the clinic waiting to see her doctor, before going to the day hospital for her LP.

At the day hospital getting vitals taken before having her port accessed.

Resting after her procedure.

After hospital days, I tend to find myself in a good old fashioned funk. Not sad or depressed...more like checked out. To combat that, last week and today I made plans with family and friends. This helped the following days go by immensely better. I will make an effort to continue this after any hospital visit as Ellie's treatment continues. 

Some good news is that we have all of next week off from hospital visits. Yay! Due to Memorial Day, Ellie will not go to physical therapy again until the following Monday, June 6th, and she does not have to go to the clinic until the 9th. No blood count checks or anything. We are hospital/doctor free for a whole 10 days! It's the little victories along the way that help. So, things may be quiet on the blog for a bit. In this case, no news is definitely good news. 

Thank you so much for your continued prayers and love for Ellie and our family. We are doing well, but most importantly, Ellie is doing well. She is responding so positively to everything, it almost doesn't seem possible. Especially for a 2 1/2 year old. Your prayers are working, so keep 'em coming!

Progress on Daily Chemo

We are about half way through Ellie's Consolidation phase, which includes daily oral chemo at home. Going into this month we were a little worried because nausea and vomiting can be a side effect. And, let's face it, a child vomiting is one of the most miserable things to deal with. Just ask this dad. 

I am happy to report however, that Ellie has not vomited once! Hallelujah! We suspect that she is having some nausea because of a decreased appetite, but we cannot be certain. All we know is that the towel on her floor next to her crib is still dry. This is such a relief, because once Ellie reaches the Maintenance phase of treatment, she will be on daily oral chemo for about two years. Knowing how well she is handling it now brings us much relief for the future.

Is Ellie having any side effects? Other than the obvious hair loss and droopy eyelids, it's hard to say. She has had a significant decrease in appetite, but she also currently has a cold. So, it is really hard to determine why she does not want to eat. She is losing too much weight, and does not want to eat ANY of the high calorie/fattening things that we give her, so we are getting a prescription for an appetite stimulant. And yes, she did get a cold about a week ago. But, no fever at all. Even though the congestion is annoying for her, we are grateful that it has not developed into anything more serious. There are some minor mood swings and stubbornness, but we really think that is just because she is two years old.

She had physical therapy yesterday, and Eva and Nora came along too. It was so much fun for all three of them. Ellie's therapist has pretty much reached rock star status in our home, so the older girls were desperate to meet her and see what all this physical therapy business was about. 

Ellie: "When can I see Miss Abby?" 

Me: "On Monday."

Ellie: "Is it Monday yet? When is it Monday?"

And over, and over, and over. Until finally, it was Monday.

We will return again next Monday. At that point, we will probably space out her visits because she is progressing so well. Although I will be happy to have one less appointment each week, I know that Ellie will be sad to not regularly see Miss Abby. 

Tomorrow is kind of a big day. Ellie is getting her hair cut. It will not be a complete shave, but it definitely will be shorter. As much as I love my little girl, and as much as she is still our beautiful Ellie, she is definitely rockin' some Smeagol/Gollum hair. This cut will just make it all a little more uniform until she looses all of it, probably later this summer. I will more than likely post more pictures later this week, after her lumbar puncture (LP) on Thursday. Until then, just try to resist this cuteness.

Ellie is Walking!

Yup, you read that right. There's a whole lot of this going on at our house...

Dancing to Peter Pan with her sisters.

Ellie loves going to physical therapy, and even though she has only been twice, she has made huge strides. When she went this past Monday, I carried her in and stood her on the floor. Without even thinking about it, she took a few steps. I think she then realized what she was doing and immediately stopped. But, the following evening she started walking again on her own, and she hasn't looked back since.

Ellie at PT

She still has more to relearn, but in the past week we have seen her regain her balance, try to run and overall manipulate her body in ways that she could not do a few weeks ago. We truly feel that your prayers are what is helping Ellie heal and adjust so quickly and easily to everything that she is dealing with. Thank you.

Last Thursday Ellie had another LP to administer chemo to her spinal fluid. Everything went fine. Ellie is very calm for a 2 1/2 year old, and seems to understand now when I tell her that she cannot eat until the procedure is over. From various conversations I have pieced together with the nurses, I think she is a favorite patient in the day hospital.

Waiting for her port to be accessed so she can go to sleep for the lumbar puncture.

Waking up after the procedure with Daniel Tiger.
It was chicken fingers again this week.

The older girls seem to be doing a bit better over this past week. Eva is almost finished with school (this Tuesday is her last day), and recently there has been a lot of swimming in the afternoons. I am looking forward to getting everyone on a new schedule for summer, or as best as we can with doctor/clinic/day hospital visits.

As always, please continue to pray for Ellie's complete and permanent healing, with no short term or long term side effects from the treatment. 

Thank you for your love and support for our family.