Nate The Great

My friend Shelly did some cute pics of Nate. He was less enthusiastic than Emmalee but I LOVE them. The first one is my favorite. :)

Beautiful Emmalee

My amazing friend Shelly took these pictures. I am in love with them. I love how she was able to capture Emmalee's personality. I love that they are fun and unique. She is going to do some of Tyler in April and I can't wait! Thanks again, Shelly!

The End Is In Sight

It seems impossible but we are near the end of Tyler's treatment. Tyler started his next to last cycle on Friday. We started week 103 on Friday and we have just about six weeks to go. He has six weeks of meds left and then he will have a final bone marrow biopsy and spinal tap. He will also have a couple more surgeries, one for his Mic-E button and one for his undescended testicles. The end is truly close.

On March 2, it was two years since the official diagnoses of leukemia. I have been trying to think back to all that has happened in our little family in that two years. There have been multiple hospital stays, infections and surgeries for Tyler, multiple hospital stays for Brent, two broken ankles and three ankle surgeries for me, a hospital stay and surgery for Nathaniel, personal struggles for Emmalee, constant stress and fear and worry. And yet, through it all, we have stayed strong.

We have realized time and time and time again that it is not a coincidence that we, the five of us, are a family. Together we have been tested and yet we have persevered. Our children, despite overwhelming circumstances, have thrived.

Tyler has met so many milestones this past two years. He learned to walk, his language skills are getting better all the time, he started kindergarten and he has shown everyone around him what it means to be strong!

Emmalee has had a tough time. She has had to put her own desires aside many times in order to allow us to take care of her brothers. And yes, there are times that she gets frustrated and upset, but for the most part she is patient, kind and understanding. She has learned greater compassion. She also now knows that she wants to be a doctor when she grows up.

Nathaniel continues to amaze us every day. He has also learned to walk. He started going to school this past fall and has changed so much. He is the sweetest little boy and we are so thankful that he is part of our family!

Many people have asked us over the past two years how we do it. How we stay strong despite our crazy circumstances. And the answer is simple. We couldn't have done it without a whole lot of help. I could never name all the people who have stood beside us through these past two years. Many are people we will never know. We have always had help with childcare, meals, Christmas gifts, surprises for us and the kids, random gifts of cash and other items, gift cards, phone calls, emails, hugs and so many prayers. Our family, friends, church family, cancer support group CURE and even strangers have made it possible for us to get through this.

And how do I even begin to talk about the incredible medial care Tyler has received? His doctors, nurses, child life specialists, home care nurse, patient care techs, social workers......how do we begin to thank them for saving our child? There simply aren't words.

I think the single most important lesson I have learned over the past two years is that we can not get through life alone. Heavenly Father put us on this earth together for a reason. He has sent earthly angels to help us through our trials. What an incredible blessing!

So now as we face the end of Tyler's treatment journey, we ask that you continue to pray. Pray that this truly is the end, that the cancer does not come back and that this amazing little boy will be able to go on and live a long, happy life. Pray that Brent and I will be able to have some peace, that we will not live in constant fear and worry and that we will be able to look back on the past two years as a gift and not a burden. And pray for all the others who must still fight this monster we call cancer.

Every year more than 10,000 children are diagnosed with cancer. This means that thousands and thousands of parents, grandparents, siblings and friends are affected by this horrible disease. Cancer isn't just about the child. Every single person that child knows and loves becomes involved. Please pray for all of these children. Several of them are children we have come to know and love as they have fought right alongside Tyler. Some have lost their battle and some continue to fight. Please pray for all of them.

We love each of you so very much. Thank you will never begin to express how we feel. Together we have fought and together we have overcome.

Confession

I have a confession to make. I miss Arizona. I miss family and friends and warmth and I really miss our house. I miss going outside in January without a jacket, wearing flip flops on my feet. I miss having windows open and smelling the citrus blossoms. I miss not worrying about the next big snowstorm.

I only say this now because it is the beginning of March and the winter here seems so long to me. I love the change of seasons. I love how green it is here in the spring and summer and the beautiful jewel tones of fall. I even love the snow, for awhile.

However, when it is really cold and dreary, gray and cold, I miss Arizona. I do not feel this way from May to November. I think I would be a perfect snowbird. Yet another dream for when we magically win the lotto.

Home!!!

We are home! Oh, how I love that word. Emmalee put it best. "Momma, we're a whole family again." How right she is.

Ty was released yesterday afternoon. The final decision was to not put in any type of line, including a PICC. Everyone agrees that Tyler is not a great candidate for a PICC simply because he is so rough on things and would likely pull it out. I honestly can't imagine him leaving a PICC alone. So for now, he will get the remainder of his Methotrexate as a shot each week. The last two doses of Vincristine will be done in clinic, via an IV placed by the nurses. He will go into the lab each week and have a finger poke to do his bloodwork. Given how close we are to the end of treatment, this seems to be the best possible plan.

Tyler tolerated the IV Vanco well until he finally lost his IV on Wednesday. They decided not to place another one and instead switched him to high dose oral Bactrim for five more days. Provided he has an uneventful weekend, (knock on wood,) he can return to school on Monday.

All in all, things are going well. Thank you to everyone for your love, prayers and continued support!

Update from Hotel Strong

Good Morning!

Ty is still at Hotel Strong. Removing the medi-port was a fairly simple procedure and he did great. He was pretty cranky afterwards but he has been fine since.

Now they're just trying to come up with a plan. They have tossed around the idea of putting in a PICC line. Honestly, Brent and I just don't see that working well for him. I really don't think he would leave it alone. They just don't know what to do at this point. The team was just here but they are going to consult with Dr. Bruckner since she is his primary oncologist. For now, we'll just have to wait and see. He only has three cycles of chemo left which is good but he also has to do some IV antibiotics.

I'll update again when I know more. Please continue to keep him in your prayers.

Please pray for Brent also. He has several new sores and he is in a great deal of pain. He is trying to work and take care of the other kids while Tyler and I are here. He could sure use the extra prayers.

To Emmalee's Future Children

I just had the most hilarious conversation with Emmalee. She said that when she grows up and is the mom, she will get to decide what foods her children will eat. I asked her what she will feed them and she said slime. Why slime? Because she doesn't want them to grow big because she wants them to stay babies so that's all she ever has to take care of. What a little goose!! She asked me if I have a recipe for slime and I told her no. She was disappointed but said that's okay, she'll make her own recipe when she's the mom.

Don't worry, future grandchildren, when you come to my house, I promise not to feed you slime!

Hotel Strong

Good Morning....this comes from our favorite "vacation" spot, Hotel Strong. :(

Last night when I went to de-access Tyler's medi-port, I noticed that the skin around the dressing looked red. Sometimes this happens from the tape so I didn't really think too much of it. Then I took the needle out. It instantly gushed nasty, greenish/yellow pus. Not good. I realized right away that his port was probably infected and given his MRSA history, I didn't want to take any chances. I called the hem/onc answering service and Dr. Norman called back right away. She had me bring him into the ED and from there he was admitted. They took him into surgery about an hour ago to remove the medi-port. For now they are not going to replace it. They want to make sure the infection is gone first.

No idea how long he'll have to be here. I'm guessing it may be awhile considering the fact that without the medi-port, I really can't do IV antibiotics at home. I guess we'll just wait and see.

I'm just praying we caught it early enough that it hasn't spread throughout his system. His blood counts looked pretty good, considering, and he wasn't really running a fever.

That's pretty much what I know for now. I'll update again as I know more. Thanks for the love and prayers!

Think it will work?

Dear Winter-

If I use my sweetest, gentlest voice and ask you very nicely, using all the magic words, will you please, please, please go away? I don't mean to be rude. Really. And don't think that I don't love you at all. Because I do. In December. During Christmas. But now it is almost the end of February. You have had your fun. You came, you snowed, (a lot!) you froze us to death, your winds have blown, we have shoveled, scraped, slipped, spread ice melt and endured day after day of gray skies. And now we'd like to ask you, ever so kindly, to leave, flee, vamoose, cease and desist, depart, withdraw, wrap-up, exit, do not pass go, do not collect your $200. In other words, GET OUT!!!

With Kindest Regards,

~Jodie

PS - Don't worry, I'll be ready to see you again in November.

Proof

Here is proof that --

A. I do exist

B. I own other clothing besides sweat pants and pajamas

C. I actually do shower and fix my hair once in awhile

Tyler's Favorite Pastime

I'll bet....

I'll bet your princess sleeps with a crown on her head. Not mine. Nope. Mine sleeps in a pink and white hand crotched snowman hat. Jealous?

Word of Warning

If your very sweet, generally happy but currently feeling-under-the-weather five year old asks you to turn on The Doodlebops for the gazillion-th time that day and you say no, be prepared. Remotes will fly my friends, remotes will fly.

Betcha didn't know your remote had so many pieces. The second battery is still MIA.

We always say that Tyler will play baseball in the Special Olympics. This is proof. That kid sure has an arm!

Hello Lurkey-Loos!

See that handy-dandy item on the left side of my blog? It tells me where all the people who read my blog come from. I see folks from all over the place. However, no one leaves comments. It makes me quite sad, I'll tell you. So, if you are a lurker or just happened here by chance, jot me a quick note. I'm curious who you are and what brought you my way. In other words, lurk no more.

A New Day

I am officially tired of last week's woe-is-me post. Yes, I was feeling sorry for myself. Did it show? Sometimes pity parties are necessary. I'm trying to get over myself.

Instead, I am trying to focus on the infinite positives in my life. Living in the moment. Enjoying the here and now. One day at a time, etc. etc. (Ahem, enough cliches.)

In other words, I'm realizing that if I could indeed rewind and start again, I'd miss out on some amazing things.

Like what? you might ask....

Nate doesn't talk yet. He's working on it. He has an awesome speech therapist. But he just doesn't talk. That does not, however, prevent him from making A LOT of noise. He is a loud little person. I love it. His favorite thing is to repeat sounds...ga ga ga ga and then wait for you to say it back. And once you do, watch out! He giggles and blesses you with his award winning smile. I live for that smile!

Emmalee uses words that are bigger than she is. What's great is that she uses them correctly. For instance, she asked me the other day to "observe the man walking across the street." She is a smart cookie.

Em's current obsession in life is planning her fifth birthday party. She wants to be ready. Never mind that it is still 58 days away. She has the theme picked out....she looks online nearly every day to "shop" for birthday party supplies. Turning five is a big deal. After all, she'll be a whole hand. She wants to invite EVERYONE she knows. Not kidding. I'm thinking that it is less about how much she desires to spend the day with those she loves and more about the potential gifts she may receive. Ah, to be almost five again.

Tonight I went in to hook up Tyler's midnight dose of IV Vanomycin. He woke up a little more than he usually does so I decided to lay in bed with him for a bit until he fell back to sleep. He said "snuggle" which just melted my heart. Tyler's idea of snuggle was a bit different than mine. I wanted to hold him in my arms, kiss his head and play with his hair. He wanted to lay by me, not really touching but knowing I was there. That's okay, I'll snuggle any way he likes. Just before he went back to sleep he reached over and took my hand. In that moment I knew that although life is crazy and we have our struggles, when we hold hands and snuggle and love, the bad parts just melt away.