Chemo Tuesday (Week 7)

Happy Birthday Annmarie! We love you!!

We were back at the hospital today for this week's chemo. Julia was not happy when we were getting ready this morning, but perked up once we were in the car. She loved having a new movie to watch (thanks Chris and Jodi!!). The clinic was a busy place today because of the holiday yesterday. She was excited to be greeted by Betsy (the art teacher) when we stepped of the elevators. She actually had a chance to do three art projects today a painting, a bird, and a butterfly.
After triage, Ms. Karen came out to get her. They accessed and flushed her port and drew her labs. She said we had to wait on the results before chemo. Apparently her counts last week were worrisome. We waited for labs to come back and in the meantime she had her physical with Dr. McLean. They are pleased with how well she is doing. She has had a mild cold the past week (from her brother), but has been able to fight it off fine on her own- a good sign.

Her labs came back and they got the go ahead to do the chemo. They gave me the past month's worth of lab reports for my records. This is the first time we've gone over them. It hit me again how different things are now. I learned today that when they say, 'her counts are good'- they mean for a cancer patient, not for a typical child. Six of her counts have been consistently low all month and last week it was the drop in her red blood cells that they were concerned about. I am happy to report that they came up some this week, so we were able to proceed.

She did great with her chemo and has had a good afternoon. We were there over three hours and it was lunchtime when we came out. She had a great appetite and ate everything I had brought in the car. She has been very giddy and punchy all afternoon. I think it is a reaction to the zofran. We've seen a pattern whenever she gets it. She giggles, laughs, talks nonstop, and does whatever she can to be sly and funny. It is quite entertaining to watch. Of all the side effects to have, this is definitely the one I would pick. She and Carter have been playing pranks, laughing, and running around all night- so sweet.
Carter has handled her hair loss very well. We never really talked much about it. He heard us explain to Julia it was from the chemo and that was a sufficient explanation for him. I think it helps that we have spent so much time on the oncology floor, so they have seen other kids who have lost their hair and it's not so shocking. He has never hesitated, been concerned, or acted like it was at all unusual. Yet another way God has covered us all during this time and given us the grace we need for each day.

We are now in the process of packing up for a road trip. My cousin is getting married on Saturday in PA. Mimi, the kids, and I are starting our journey tomorrow to include a pit stop in DC. Daddy will fly in to join us on Friday night. We are excited to see our extended family and for the great-grandparents to see the kids again. Please pray for travel mercies for all of us and comfort and good health for Julia. We hope to be able to manage her side effects to make this trip possible.

Memorial Day Monday

We've enjoyed a fun and peaceful holiday weekend. It is fun for us that Julia's birthday always falls around Memorial Day and we can enjoy a long weekend with friends and family. If it were up to Julia we would still be celebrating her birthday :) She has said numerous times, "I just want my friends to come back." We're thankful she had such a good time- we did, too.

This morning Julia and Daddy spent some time out together, while Mommy and Carter resumed the great shoe hunt. It seems all the boys in the county must wear a size 11 because we have been to half a dozen stores to try and find basic shoes. Poor Carter was down to just his crocs. I am happy to report we were finally successful at the seventh and eighth stores and he now has sneakers, sandals, and cleats- yippee!

Then we took some time out to watch the wreath laying at Arlington National Cemetery on TV. Grandpa was there representing the Marine Corps. We wear our patriotism with pride and observe this day with a lump in our throats and grateful pride in our hearts. As a military family, honoring our veterans has always been a part of life. This is a day steeped in so much history. For hundreds of years America has been preserved and protected by those with a deep sense of loyalty, sacrifice, courage, and honor. In our generation that volunteer service comes with huge personal sacrifices, long deployments, uncertainty, and danger.... and yet Americans are still stepping up to wear the uniform with pride and continue the unbroken legacy left before them. Our family flies our flags with pride and teaches our children what it reallymeans to live in America. Freedom is never free and we will never forget.

We met for lunch at one of our favorite local restaurants- Gianno's. They have a stone oven pizza and salad bar lunch special that can't be beat. Carter and Julia feasted on pizza, salad, and noodles to their hearts' content. Then after a nap Julia had her 3 year well-check or 'not well' well-check, I don't know. I wasn't even sure if she was supposed to have one, but they assured me she was. She was very cooperative and relieved to be getting 'just a check up'. The nurse was impressed with how cooperative and relaxed she was. I think she forgets what a typical appointment is like for her these days. The doctor said everything looked great. He was pleasantly surprised with how great she was doing. He was actually the doctor that told us of the original tumor and sent us to the hospital back in March. He has been following her progress and calling us to check on her throughout this time. We are still so grateful for his role in her diagnosis.

I had to keep changing my focus at the appointment. During the exam he would ask questions about things I might be concerned about and my answers always related back to the cancer- her counts, responses to treatment, side effect management, etc. But he was referring to her normal development. It's really difficult to separate the two. I don't know if I can anymore. But I am happy to report she is a bright, healthy, growing 3 year old who happens to be battling cancer, too.

Tomorrow we are back to chemo. Julia gets two drugs tomorrow- vincristine and dactinomycin. Every week is both easier and harder. It is easier because we are accustomed to the process and so at home at the hospital. We know what to expect and the doctors and nurses have become friends. At the same time each week gets a little more intense. The effects of these drugs have been cumulative, so each week I am a little hesitant. It's a weird dichotomy because in some ways I feel relieved that it's working because we are seeing the effects that are expected. I want to know that the chemo drugs are getting the job done and for now, that's all we can see. But I must choose to trust what we can't see and know that God has already gone before us in this battle and is fighting for Julia. I loved Holly's words from her CarePage as her infant son began his final round of treatment (for AML) this week...

"We continue to pray for maximum benefits and minimal side effects, as God turns these toxic chemicals into healing waters for our son." -Holly (Matheson's mom)

Lord, I pray that for Matheson and Julia, and all those facing chemo. I have no doubt that God can do exactly that. That is how we as moms can willingly hold our children and encourage them to go through with it because we know our God is the Great Physician. Please pray this for Matheson and Julia this week.

Happy Birthday Sweet Julia!!

How can it be that you're already three?!
You were so excited when Daddy and I came to get you in the morning wishing you a happy birthday. You were ready for your party now. Only seven more hours to wait...

We went outside to enjoy the beautiful weather and play in the sandbox. This is by far one of your favorite places to be.

(Here's Julia 3 years ago enjoying the holiday weekend...)

Then Mimi, Grandpa, Aunt Beth, Uncle Jason, and Anderson arrived and the celebrating began.

You and Carter were hysterical chasing Daddy in the truck...

Claire and Julia, best buddies...

The three crazy cousins...

Jack and Julia building their ice cream masterpiece. These two could live in the sandbox quite happily.
Party time!

The three bellies and three babies at the buffet. For their credit, they were the last ones in line. I couldn't help but snap the shot! We can't wait to meet the new (from the top) boy, boy, and girl. Ours is a family of baby lovers and we can't wait for their arrivals!

Jack, Carter, and Uncle Jason playing (one of many) lacrosse games...
Julia sporting her new birthday hats...

Happy birthday to you!! She was so excited to have ice cream cake, candles to blow out, and everyone singing. She wasn't embarassed a bit.

JuJu and Mommy. My sweet girl...
(Here we are 3 years ago...)

After dinner, it's time for basketball. Happy smiles abounding. We were so thankful to be blessed with great weather- overcast and cool- just what we needed :)
Grandpa and his gang...

A little girls' paradise! Thank you Aunt Beth, Uncle Jason, and Anderson! We will be spending countless hours playing in the house. (Ally and Emmy, JuJu can't wait to play with you.)

You've grown from a sweet little baby to such a precious and strong little girl. I can't believe how much you've grown up. I have loved every moment of being your mother. Your heart is so full of love. You cherish your family and friends. Your faith is growing each day. You have the gift of encouragement and optimism. You handle life with quiet grace and contentment. You appreciate the simple joys in life and have already learned what really matters in life. I am so proud to call you my daughter. As you like to tell us, "I am Daddy's sweet punkin, Mommy's sweet girl, and Carter's sweet JuJu." We all love you so much. I pray this is a year full of healing, joy, new adventures, and simple pleasures.

And the motion picture version...

Here's a video link of Grandpa at the USNA graduation commissioning the new Marines.

(The Marine graduates are actually in the black coats, the white coats are Navy.)

Tomorrow he'll actually be at Arlington at the Tomb of the Unknown Soldier for the Memorial Day wreath laying. he will be with President Obama representing the Marine Corps. So keep your eyes peeled if you see footage on TV.

Friday Fun

We met our friends at the park today for some fun in the sun.

Julia was so excited to see her girls...

They surprised us with a birthday party for JuJu. She was so excited. All week she asks every day if it's her birthday. I think girls are much more excited about celebrating than boys. Carter was never this into his birthday. Julia has been talking about turning three for more than six months and has been planning her party for over a month. Granted, she has very simple taste- pizza, cake, balloons, friends, and goody bags- that's a party.

She loved the cupcakes Shana made, from scratch nonetheless! She told us when we left, "Mommy, I loved those cupcakes with the icing." And she ate two!


There was lots of fun to be had at the park- climbing, sliding, swinging, tag. Carter was lovin' it. Every new person that showed up got him excited all over again. It was so comforting to see him so happy, engaged, and active.
Julia has turned into quite the monkey. She can scale the rock wall, climbing rock, and climb all the ladders without hesitation. She got some good playtime when we first arrived, then it started to get crowded. I'm not comfortable allowing her around crowds of kids we don't know- too many potential exposures to illnesses and vaccine viruses. I feel bad for her, but she has learned it's just a part of life now.
Our playgroup had a big birthday surprise for Julia...They each made a square for a quilt. It is absolutely breathtaking. So much love when into each and every square. It even has picture collages. It was painstakingly quilted with love and prayers by Karen- wow! You guys are amazing and we are all so blessed to call you friends!
Julia loves it. Everyone she has seen since, the first thing she says is, "I got a birthday surprise today, do you want to see? It's from all my friends." She and Carter cuddled under it after their bath tonight. There is nothing quite like being wrapped up in the warm softness and love of your friends!

Julia's hair is almost completely out now. We sit on the sink twice a day to brush her hair- in the mornings and after her nap. As it falls out, she ends up with pieces in her mouth and eyes, so we spend time brushing it to get out the loose strands. Every day when she wakes up I hesitate a moment, wondering what her reaction to the face in the mirror will be. Not once has she hesitated. Her grace in these trials is inspiring. Yesterday morning she said, "My hair is falling out from the chemo medicine, but it's okay because it will grow back." And off she goes to start her day. Her faith and hope unshaken.

I'm so proud of you punkin. I love you sweet JuJu, my beautiful brown-eyed girl. I can't believe you're going to be 3 tomorrow!

Hey, That's Grandpa!

We went to read the headlines on MSNBC this afternoon...

We weren't expecting Grandpa's face to pop up next to President Obama's! (he's on the left- black coat) Grandpa was at the Naval Academy today commissioning the graduates going into the Marine Corps. Carter and Julia yelled, "Hi Grandpa!" at the computer screen.

Here's the link to the story if you want to see it. Hard to believe he walked across that stage as a graduate 36 years ago!

(The Blue Angels' flyover)

Congratulations to all the new graduates. Thank you for your sacrifice, dedication, and service to our country. You make us all proud to be Americans!

We can't wait to see you tomorrow Grandpa and Mimi!

Life in the Mixing Bowl

I mentioned when we first came home from the hospital what a shock it was to exist in the regular world again. In our hearts, minds, and souls there will forever be this dividing line- before cancer and after cancer. The world will never quite look the same and our family is forever changed, yet life goes on.

Normal life is oddly reassuring and comforting at times. At other times it startles you, like walking into a piece of furniture. As time goes on and Julia's hospital appointments have spaced to a week at a time, we have started to find a new groove. We are still living a semi-quarantined life. I don't run errands with them like I used to- it's just not worth the risk of illness. When we do I carry her to keep her from coming into contact with anything. We have to avoid our favorite child-centered locations. Our time with friends is much less than it used to be. We are trying to get into a new rhythm. We are so blessed that it is spring and we can be outside for a change of pace and new activities. We're finding our way.

I try to plan, but still have to be open to anything because we never know how Julia will be feeling or what she'll feel up to doing. I struggle with managing her cries and needs, with Carter's need for interaction and normalcy. He has had to adjust, too- in so many ways. Sometimes things look and feel so normal and then it all just falls apart and it becomes so obvious we are all wounded in this. I struggle with maintaining discipline and limits and then just letting things go. When you're thrown into cancer that line becomes so ambiguous and ever-changing.

You can't live in that in between place where time stands still, but it felt like such a safe place- a place we didn't want to leave. I still remembering lingering in the hospital after her surgery and diagnosis. We didn't want to leave. It took us hours to convince her to go home. But it is not 'life' in that place and we all need to live. I feel like we are now living on the edge of the two. We jump back and forth between the quiet place and this new life. There are times when they each seem comfortable.

Cancer is so unpredictable. We don't know what our life will be like day to day. We make plans, but everything is tentative. We don't know what lies ahead and what challenges we have yet to face. And I am okay with that because God knows and He is in control. I wrote a post during my own healing from surgery about learning to abide. God is nudging me in that direction again. I can feel myself wanting control and wanting to know what to expect. I have to be still and abide in Him with each day. I don't have to know what will happen today or tomorrow. I need only to trust that it is His plan and He will equip me to deal with it. I just have to remind myself of that truth, over and over. I cannot depend on my own strength in this fight.

We were all shocked this week as Julia started to lose her hair. It was something we expected at the beginning, but have pushed out of our minds. And now we must face it head on, every day. She is losing it all day long. There is hair on us, in her bed, in the bathtub, on her shoulders, on the floor. When we brush her hair it comes out in large handfuls. When you reach over to brush a curl from her face or touch her head, you are left with a handful. When she takes out her bows the hair comes with them. She has noticed the piles of hair beside her and asked several times. I tell her it is falling out from the chemo and will grow back in the fall and so far that is okay with her. I don't know if this part ever gets easier.
When I pull the hair out of her brush I find myself dropping it in the drawer. I just can't bring myself to throw it away yet. That just seems wrong for some reason.

Carter's been pushing back against us a lot more this week. This morning when he crawled into bed with me I asked him what he wanted to do today and he said, 'play with his friends'. I can do that. In no time I was on the phone 'placing an order' for his two best friends for the day. It was the best decision I made this week. He played all day long. Not once did he ask me for anything or whine or scream. It was exactly what he needed. I was able to clean the entire house (took all day) and care for Julia without feeling torn that I was neglecting his needs. He just wants people to play with and I am trying to find a new way to work that in to our new life. It was a peaceful day of play at our house...

The night ended with Awana. Tonight was Carter's last night as Cubbie :( I cannot believe he is getting so big. We have loved our two years in Cubbies and have had a memorable experience. Carter has made great friends, had some incredible leaders, played lots of fun games, and worked hard learning his verses- lots of wonderful memories. Next year he will be in Sparks and Julia will be a Cubbie- wow!