Friday Favorites

OUR FAVORITE HANDHELD PRESCHOOL VIDEOGAMES:

• Leapster:Scholastic Math Missions
• Leapster:Mr. Pencil's Learn to Draw & Write
• Leapster: Scholastic I Spy
• Leapster: Scholastic Get Puzzled
• Leapster: Leapfrog 1st Grade
• Leapster: Scholastic Animal Genius
• VSmile: Cranium
• VSmile: Bob the Builder
• VSmile The Lion King
• VSmile: Little Einsteins

Carter's first system was the VSmile. We have both the TV unit and the handheld. We also have the AC acapter and car charger. The TV unit is fun for one or several children. I like that it takes turns and allows both kids equal play time. The handheld unit we use for trips and appt waiting rooms. Our only frustration is the car charger cord falls out while the kids are playing which can get very frustrating, though you can just use batteries.

The Leapster is the current favorite in our house with both the kids. If I had to choose only one, I would choose that one. I love the Scholastic and Leapfrog games they offer and the power cords are much more reliable. The Leapfrog phonics and reading games follow the same lessons and style of the DVDs- reinforcing the same concepts, songs, etc. Many of these games are harder to find in stores, but are always available on Amazon. (A set of cheap headphones are a bonus, too.)

Carter also enjoys playing the PSP (its actually Daddy's he uses when he travels for work). Carter plays MLB 09 The Show, NCAA Football 09, and Bust A Move Deluxe. He has fine tuned his knowledge of sports rules through many of these games. We use it as a reward in our house. If he completes his chore chart for the week, he is allowed to play the PSP in the car on Saturdays and Sundays. We also take it on long car trips with us.

Life From the Sidelines

We've been having a good week around here. Daddy's in Florida working and we are making the most of everyone feeling good. It has been encouraging to have Julia's counts higher, so I didn't feel quite as panicked every time we left the house.

We went back to storytime for the first time in a long time. The kids talked about it excitedly all the way there and all the parts they were looking forward to. They are still singing the songs from that day. I've found ways to stay on the outskirts of things and kept her away from others. But it seems there is always one kid who repeatedly invades our space. I try to be nice, but I know my 'mother dog' glare comes out on more than one occasion. The frustrating thing is these children are usually older, acting inappropriately, and have parents who just ignore it. So I will continue to glare :)

We actually went to the waterpark one morning, too. In the past this was a daily destination for us and we've really missed it this year. We decided to try the early morning on a weekday and I'm happy to say it wasn't crowded. I was able to keep a 3 foot radius between her and the other kids. Not easy, but we did it. After about an hour I had had enough of the over-attentiveness, so I showered them off and we went to picnic in the car. It was all well worth it!

We had to run errands one morning, so we stopped to eat a quick lunch before Carter's swimming lessons. I disinfected the table and chairs and we sat down to eat. When he finished, Carter went off to play and Julia was left to just watch. It all seems so unfair, but sadly necessary.

Carter has had two baseball games this week. He's really enjoying the season.
He still spends a good amount of time on the ground- as often as possible.
His new fascination is making the throw from his knees, oh geez (eye roll).
He still gives the play-by-play as he goes, too. I must say he has been switch-hitting lately (his idea) and is doing an awesome job. (He's actually got a better average leftie than rightie now.) Julia is hanging out and watching from the sidelines.
I feel bad because she wants to play on the huge playground next to the field- like all the other siblings- but she can't. It didn't used to frustrate her, but now it does. I hate telling her 'no' about something so simple. We go over and over the reasons why, but I still wonder what she really understands.

It seems in the past month she has started to understand more, from a developmental standpoint- around the same time she started resisting port access and blood draws. It's like something just clicked. She is finding her voice in all of this. I've been moving forward cautiously. I'm trying to find ways to get her to open up about her thoughts without suggesting to many ideas. We have talked to her in very basic terms about the tumor, surgery, and chemo. I hesitate to talk too much about cancer in her body because I don't want her wondering if it's still there and worrying silently. We have explained a lot more to Carter because of his age and understanding. So now I struggle with how much more she needs to know.

Its difficult to explain, but she just has this look that tells me she understands and is feeling much more than we realize. The observations she makes daily and the things she says remind me just how much she understands and how much of a thinker she really is. At times she gets distant and quiet or just frustrated and I want her to be able to talk about her feelings. I feel almost guilty sometimes like I'm not completely 'there' for her. I don't want her to grow up with the feeling that she went through this 'alone', not being able to talk about what was happening to her. I don't want her to feel like I ignored this major event by carrying on as normal as possible, but we need to try and keep things 'normal' at the same time. Please pray for wisdom in this area. I am trying to do 'play therapy style' conversation to draw out what she might be thinking. Our Candlelighter's books are on the way and I look forward to reading them with her and maybe starting some conversation.

On one hand her age makes this easier because she is optimistc, joyful, and trusting- but it's also hard because I can't tell how she is processing all of this. When I hear her say, "I can't play there because of my chemo." I just wonder what that means to her. Yet again, God has met us right where we are. I stopped to get the mail today and Julia asked if there was anything for her. I looked and said, "yes, actually there is." She had a package from PA from one of my parents high school classmate's daughter who had cancer as a child. She sent a book about being a kid with cancer that had helped her during her treatment days. We stopped and read it right there in the driveway. She also wrote a heartfelt letter that I read aloud and could barely get through. Julia has looked through the book several times on her own today. When I came downstairs tonight, they were sitting together on the couch and Carter was reading it to her.
I was reminded to take this all one step at a time and let her lead the way. Things continue to change, but I trust God is already there to meet her where she steps. My daily prayer is that he continues to draw each one of us closer to Him in all of this. It will be different for each of us, but only He knows exactly what we need.

Deep Thoughts

I just love blogs when people speak the Truth and it resonates deep. I am fortunate to have many friends and acquaintances who do and bless and challenge me daily.

This one really hit me tonight....

She's a pediatric med student and a gifted writer. If you're looking for a good read go back and read some of her old posts, you won't be sorry. I feel medical professionals, social workers, and teachers get a perspective of life that not many people experience where things aren't so black and white. Policies, values, personal rights,and justice are one thing; but then you walk with children into places you never dreamed you would tread and you find out what life is really about and where God is in all of this.

The same thing happens here, too; just on the other side of the world.

Sweet Summertime

I'm feeling a need to be thankful. As our daily life rolls on we are still finding our way with all of this. Each new phase is an unknown and we prepare the best we can, adjust and adapt, but its still such a process. Last week I wrestled with a lot of my negative feelings and this week I am trying to turn that around. We have so much to be thankful for in our journey down this cancer road and I have so many reasons to praise Him...

• In following some other Wilms' patients it has really hit home with me how incredibly blessed we are to know that Julia's tumor had anaplasia (the aggressive nasty cells). When the tumor is removed and sent to pathology, they remove microscopically thin slices of it to analyze under the microscope. We are seriously talking about needles in a haystack here. We were also blessed that one of the best Wilms' pathologists in the world is at Brenners and reviewed Julia's tumor. In early stage tumors, anaplasia is not always found becuase we are talking about microscopic cells within a larger tumor. Pathologists do not look at every layer that would be utterly impossible. But in Julia's case it was found. The latest NTWTS (Wilms tumor study group) research reinforces the belief that most cases of cancer recurrence where anaplasia cases that were not found and were therefore treated as favorable. The cases of recurrences in the liver, kidney, or lungs are usually attributed to anaplasia cells that were never discovered. I can honestly say praise God, that Julia is receiving stronger, more aggressive chemo and radiation. Thank you!

• Again we are SO thankful that Julia's tumor was found so early. I don't think it will ever cease to amaze me how God's hand was at work. After one UTI they wanted to run tests and I hesitated, when the UTI persisited I reluctantly conceded; deciding God wanted it to be and it was that day we found this tumor. As rare as it is for her to be one of 20 kids in the world diagnosed with this form, it is even more rare to find it so early. It just doesn't happen, because there are no signs. We just happened to look. Thank you God for being in the details every step of the way. You gave her to us and it is so apparent that You continue to carry her in Your hands daily.

• In am so thankful to be at Brenners' Children's Hospital. I hear so many other stories of less than ideal situations and families who have to travel hundreds of miles for treatment. We have this 'cancer haven' right in our backyard. That means so much when we have spent 32 days there in the past 4 months.

• I am thankful for God's 'cancer grace'. It is so true when they, God gives you the grace you need to handle what you are given in life. Never in my wildest dreams could I have imagined our family would be dealing with this, but everyone is and in different ways. There have been many bumps and hurdles along the way, but God has proven faithful every time. It has become my comfort. I cannot prepare everyone for this, control the situations, and anticipate tomorrow- but I can trust that God is already there and will meet each of us in our own way.

• I can never say thank you enough for everyone out there who is following our lives and praying every step of the way. Prayer is our lifeline and I pray God blesses each one of you in avery special way.
  

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We had a good weekend. We enjoyed Julia's higher counts and got outside to enjoy some of our summer. The weather was hot, hazy, and humid and we had no plans. Saturday we spent the morning at the pool cooling off...
Sunday we were off to see the Hoppers. It sure was hot, but so were they. It was an exciting game and the Hoppers one 9-2. Yay!!
The kids had a great time and enjoyed, dippin dots, sno-cones, and running around on the hill. The stadium was rather empty, so they pretty much had the place to themselves.
It was a great family night.


Our bald little baseball lover!

Prayers for Stellan

If you don't follow her (Mckmama) blog, we are sending up prayers today for her sweet baby boy Stellan who was diagnosed with a fatal heart condition, born healthy, but since the spring has had intense bouts with intractable SVT of his heart. I, too, have SVT though my is controlled (mostly) by daily medication. I was literally on my knees praying for this baby the morning of Julia's cancer diagnosis, having no clue of what lay ahead in our future.

Stellan is 8 months old and has been in SVT (heart rate in the 200s) for over 3 days. Speaking from experience I can tell you it is a horrible feeling. The best I can compare it to is running a sprint while laying down. You hear your racing heartrate in your head and feel like it will beat out of your chest. I have never been in SVT for that many days and cannot imagine the shear exhaustion and discomfort. He has had countless doses of adenosine to stop and restart his heart (very painful), lasix, transfusions, beta blockers, etc. Stellan's body is not handling it well and is shutting down. He is being airlifted to Boston to the Children's Hospital where they attempted ablation several months ago to attempt further treatment. Her other 3 children will stay behind.

Please pray for sweet Stellan and his family...

Friday Favorites

OUR TOP TEN KIDS' TV SHOWS... in no particular order (and some of the concepts they teach)

1. Toot and Puddle (geography, friendship, cultures)
2. Sid the Science Kid (scientific method)
3. Wonder Pets (teamwork, music, animals)
4. Little Einsteins (music, cultures, travel)
5. Zooboomafoo (animals, nature)
6. Pinky Dinky Doo (vocabulary, story structure, creativity)
7. Little Bear (story telling, friendship)
8. Imagination Movers (problem solving, critical thinking)
9. Special Agent Oso (life skills)
10. Curious George (scientific discovery)

These are our current favorite TV shows. The kids usually watch 3 shows a day, but this summer it has been more because of Julia's illness. Some of the shows we will watch any episode, while others I preview first. One of the great things about Tivo/DVR is that I can keep episodes we like recorded and preview others in advance. There are certain topics our family chooses not to watch- ex. fears, teasing or name-calling, pirates, aliens, monsters, Halloween

Guess What?!

Today we went in for Julia's weekly labs at our pediatrician's office. The actual appointment was unnecessarily long and confusing (we were passed off to a different team of nurses/PA/doctor) who weren't familiar with our situation, but after an hour we were out. Unfortunately in all the confusion, I didn't receive my copy of her results, so we had to wait to see the latest results.

Daddy went by to pick it up tonight and I am happy to say Julia's white blood count is in the lowest range of normal right now!! We actually had several categories of normal on her lab report. Every week for months we have seen nothing but a column full of lows. So normal is HUGE progress. Praise God for His great healing! Her red blood count is holding strong, too.

It is such an encouraging sign to see that her body has been able to recover during this two week break. It makes me feel like my stint as her 24 hour short order cook is paying off :) She has also avoided catching the flu Carter had last week. This says so much about the increasing strength of her immune system. We realize it will likely drop again after her next dose of Doxirubicin in August, but she is going into it strong and her body is able to recover on its own.

It is so encouraging to see even a flash of her normal self. I think every parent in this situation wonders deep down what will be left of the child they used to know at the end of all of these treatments. Which of the changes will be permanent? Which of the side effects will we see? What long term effects will crop up in the future? In the same way we can't visualize her with hair anymore, it is hard to visualize what her new normal will be when we reach a plateau in all of this. Little shining lights like this one help me to imagine areturn to good health one day.

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The kids had a fun day today. Lily and Claire came over to play for the day and they swam, colored, pretended, laughed, ate, and sang. The house was full of happy sounds as the kids were filling their love tanks with the joy of their friends.

It still amazes me how much Julia enjoys playing doctor. The past few visits she has been increasingly resistant to going and participating, but its still her favorite thing to play.

Carter was so excited to finally get a chance to meet baby Ava. He has been eagerly waiting for many weeks. This little boy loves babies and is so good with them. It melts my heart to see him hold and love her. On one hand he looks so big and I realize he's growing up, but on the other I see the same fresh innocence in each of their faces and it makes my love for him grow deeper.
Julia is a little jealous of the new arrival. Annmarie holds a very special place in this little girl's heart and life. I think she senses some competition...

Half and Half

Half our day was really great... the other half? not so much.

We all woke up eager and excited this sunny morning because we were going to Emily's pool to swim with our friends! The kids have been talking about it all week. We were actually ready an hour early because everyone was so excited. We loaded all our gear. Is anyone else flabbergasted by the amount of stuff required to take two young kids to the pool? It blows my mind every time as I fill the back of our minivan, but it was completely worth it!
The kids were all wonderful and played and swam to their hearts content.
There were lots of smiles and laughs all around.

After we left the pool, things started falling apart piece by piece. We changed our clothes and put Carter into a dry suit to head to swimming lessons. I tried to reschedule Julia's dentist appt on the phone and of course their office was on vacation. Then I tried to call the peds office to make her lab appt for tomorrow and they were at lunch. When we got out of the car Julia climbed into the stroller and tried to buckle herself. Suddenly she was screaming and had taken the tip off her finger in the clasp- poor thing- bleeding everywhere. As I'm trying to settle her, my phone rings. I flipped it open and it literally broke in half! It was now two, instead of one. With the screen completely detached it was totally useless. So much for phone calls.

While Carter was in his lessons, Julia and I were happily playing cards in the hallway. A group of elementary age girls walked by and blatantly and loudly were making fun of Julia and calling her 'weird'. It was the first time this has happened to her so far. Lots of people stare and some ask questions about her baldness- we've grown accustomed to it, but no one has teased and mocked her. It just broke my heart because she had to hear it and feel it. I wanted so badly to take it away, but I couldn't. She looks pretty pitiful today. Her swollen face has now bruised from her lip up to her eye. I tell her every chance i get how beautiful she is and I pray she knows it in her heart.

We left swimming with two exhausted children. Julia happily went down for a nap. Carter of course refused, though it probably would have done him (and me) a lot of good. I took a quick shower, hoping to feel rejuvenated and even put on a dress and earrings. Maybe things will start looking up now. Not so fast. As I walked in our bedroom, I discovered the cat had thrown up all over the floor on my side of the bed- yuck!

When Julia woke up, we went to meet Daddy to hopefully remedy my phone situation. In the time it took to drive the 10 min over there, Julia managed to pee from her chin to her knees. Now what?! I had no extra clothes in the car, so I changed her diaper and put her in a jacket we found in the trunk. Oh my! After we found a phone, I took her Target to grab a new outfit, so we could get some dinner. The kids were starving. Why is it that any other day I could have found a dozen choices, but today we couldn't find anything? We finally put together something cute and inexpensive and headed out- dressed this time :)

It's been one of those afternoons, but we have persevered through. No one lost their temper, no one had a break down, and we are all asleep or heading to bed hoping for a good day tomorrow. Julia goes in for her weekly labs in the morning. She seems to be be doing well so far, so we are praying for no surprises.

LIVESTRONG

I'm sure most of you are familiar with Lance Armstrong's LIVESTRONG campaign for cancer. He is now working on a global movement to fight cancer. Most cancer is highly treatable and the 28 million people in the world living with cancer today deserve the best treatment possible. In an effort to increase funding, push for research, and increase access for all, LIVESTRONG is compiling an international book- The World Cancer Declaration to send to international leaders making policy decision s about cancer funding. All you have to do is add your name.

I just dedicated a page to Julia at LIVESTRONG Action.

This page is a part of the world's largest dedication book that LIVESTRONG Action will use to pressure world leaders to do more to fight cancer. Can you add your name to my dedication page? click here, it only takes a second.

Right now, Lance Armstrong is dedicating his ride in the Tour de France to the fight against cancer. And after the race, he'll send this dedication book; with your signature; to world leaders and pressure them to make cancer a priority in their own countries. It's our best chance to push for better treatment, more funding for cancer research and access to care for everyone around the world.

But if people like us don't stand up, these leaders won't pay attention.

Will you check out my dedication page? Julia inspired me to take action - hopefully she'll inspire you to do the same.

All of our families our touched by cancer in some way. If you wish to add your loved one to the book, you can fill out a simple form online.

St Baldrick's Shavee

We have all decided Daddy can go ahead and shave his head in support of St. Baldrick's. We were so touched to have Julia as an Honored Child, Daddy wanted to do his part to make a difference in the lives of other children.

So September 12th he will be one of the shavees at Finnegan's Pub in Winston-Salem. Click here to see his 'participant page'. If you feel led and wish to donate to pediatric cancer research, you can do so easily here. If you work for a company that matches funds, St. Baldricks is a 501(c)(3) non-profit organization, Federal ID # 20-1173824.

Thank you to all of you who have donated so far! If you would like to join him as a shavee and raise pledges of your own, we would love to have you on his team (or in honor of another child). If you live elsewhere and are interested in participating, there are hundreds of events all over the country. Just click here to find an event near you.

Baseball is Back... finally!

Carter was so happy for baseball season to finally start. They started practicing the last week of June and the games run through mid-August. (The hottest possible time of the year, though this year we are getting a welcome reprieve. Last year all the games were above 100*.)

He was in his element being back on the field. It wasn't long before he had the other parents in stitches because he coaches and commentates through the whole practice. This kid lives in 'play by play mode'. His head is like a highlight reel. He has watched so much Sportscenter that he knows the backhand shots always make the tape, so he tries to make every catch that way and he never misses a chance to dive. Such a nut!

Daddy is assistant coaching this year and is enjoying the opportunity to 'officially' do what he's been doing all along. He is great with the kids. The biggest challenge has been learning the crazy pitching. They have to pitch over hand, but the kids are so little their strike zones are low and small. It is not easy to do. Carter is happy to critique his technique and 'umpire' from the outfield :)
Did you catch the second baseman in the background? This kid brings me so much joy to watch. He's like a real life 'Little Rascal'. He wears his hat sideways because he likes it that way and his knee socks are so cute. He forgot his glove to the first few practices, so he would stand with his hands on his hips most of the time. I love kids' sports :)

Carter's hitting well these days and loves that the tees are gone this year. He is movin on up.

His little body actually comes off the ground when he hits...
Pregame huddle before the first game for their 'virtue of the day' lesson and prayer time...

Carter is loving every minute!



He has intense focus...

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We were all back at church Sunday morning. It was so good for everyone. Community worship is such a vital piece of the Christian walk and our church family is just that- 'family' to us. Having to miss Sunday service really effects us after a while. It was definitely the boost I needed to face a new week.

Carter and I had a fun afternoon on Sunday at the waterpark. Several of his friends showed up and he had a blast playing with kids again. It was so good for him to get a chance to just play. We shared lots of yummy treats and he watched the people playing at the game booths. he has been fascinated with them since he was a toddler. I have never let him play because of the cost and difficulty. He really wanted me to do the football game (throwing a regular football through a hole). I told him I would do one toss for $1 and I am shocked and proud to say-- I made it! He got to choose a play football. He was so excited and Mom has definitely earned some cool points :)

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We have had a good day today- so much better than last week! Carter is back to his more normal, agreeable self. We are trying to find a flexible routine that works for us all and brings some joy into our lives. The kids were both feeling pretty good today and played very well with each other. We also finally got back into the swing of homeschooling after a break for vacation. It all felt closer to normal than it has in a long time.

Poor Julia took a nasty spill this afternoon. She was having fun doing a workout tape with me and when she was walking across the living room she tripped and hit her face on the coffee table. She thankfully spared her teeth, but hit her upper lip, nose, and cheek. Poor thing! Adding insult to injury, she already has so much jaw and teeth pain from the chemo. Her swollen face is pitiful, but she is handling it well so far.

Walks, Water, and Whining

I have tried hard to make our days as joyful and enjoyable as I can. I am praying for God's constant guidance and direction in how we spend our time. We have been trying to get outside as much as we can. The double jogger has been a huge blessing. It keeps the kids shaded, comfortable, and isolated from each other.

I started running again this week, if for no other reason than a change of scenery. I've found I can get in an even better workout if I give the kids an ice cream cone and set out. At least I'm not eating the ice cream this way :)

We have been gardening and working in the yard to give everything a little 'tlc' from our recent absence. Julia is such a cute, little, eclectic gardener. This girl loves her dirt!
Our huge zucchini plants have finally yielded produce. I was starting to wonder what was up. The squash has been going strong for several weeks, but not a single zucchini. Apparently its been holding out because this one was huge! and yummy!
It is so nice to get lettuce right from our yard...
We've taken advantage of the overcast weather to spend as much time as we can outside. The kids really enjoyed 'painting' with water. There's just something magical about being handed a huge brush and a full bucket. Huck Finn anyone?
We also finger-painted. We reminisced how much Carter used to dislike this because of the mess. They both had a great time experimenting with color and shape. It was a great way to investigate mixing primary colors.
and textures with our play cars...

Then I decided to get really crafty and build a river with the kids out of foil. (No, I didn't come up with this one.) I found it on a great website I heard about on Facebook. Now we all have our moments of inspirations from time to time, but seriously this lady is just bursting with it! (And apparently a huge supply closet where she stashes her wares for craftiness.) When God was passing out creativity I think she was in line 10 times!! You have to check it out to believe it. I kept going back to read older posts and I think my jaw was on the floor by the 4th page.

We took a 25ft roll of aluminum foil and unrolled it. (Note, your kids will then argue about who gets to play with the cardboard roll at the end. Don't say I didn't warn you!) Then fold and bend up the sides to make walls. Fold and reinforce the end by doubling over the foil. In retrospect you can definitely make a shorter run and it still works. If you want to double the foil to reinforce, you must double the entire length or the water will seep under and get out.

Then turn a hose on gently and let it fill. We used plastic bottle caps as boats and the kids put rocks, from their collection, in the river bed to change the flow.

Then we played with sidewalk chalk. To make it more interesting, give the kids water buckets and paintbrush to paint their drwaings. It will intensify and blend the colors like watercolors.
Then they wanted to make parking spaces for their bikes and trikes. They set to measuring the spots and drawing the lines and did a great job. Then Carter said they needed two wheelchair spaces and two stroller spaces in their lot- too funny. I helped with the drawings and they colored them. It was so cute to watch them park their 'cars'.

We also made it to the farmer's market. It's amazing what $20 worth of homegrown (except the lemons and asparagus) produce can do to lift everyone's spirits....
Julia has been doing well. She is having a lot of bone and jaw pain, but is tolerating it well. She is still eating and sleeping well. She had actually gained 3 pounds at her last appointment (in less than a month!) Her tastes continue to be unpredictable, but she is self-managing well. Today it was lots of peaches, pancakes, and hard-boiled eggs- whatever works for her.

Carter is feeling better. He is still catching up on rest, but has been his normal self most days. We are now struggling with discipline. He is tired of the quarantine and minimal contact and is taking out his frustrations on everyone. Combine that with five year old independence and a three year old who wants to do everything herself, but can't and you get a lot of whining, correction, and conflict. We've dug in and our ready for battle, but it is tough. Billy and I looked at each other many times today and had to just (secretly) laugh at the craziness- to keep our sanity. Please pray for our strength, endurance, and God's wisdom in molding our children's hearts and not just their behavior. We don't strive for merely obedience, we want character. Parenting experts say you have to choose your battles wisely and pick the hills you're willing to die on. We're on one of those hills right now and man, is Carter determined! Now if we can just mold that into a Godly virtue...

The Darkness is Creeping In

I don't know exactly when it started.......

Maybe with Carter getting the flu, with Julia's increase in her chemo dosages, with the loss of a Wilms' patient whose blog we follow. I hate that I can't remember her with hair. I look at pictures and my mind can't remember anymore. Her 'chimpanzee hair' has become normal to us. I hate not having a plan to our life. Everyday is an unknown and we have to choose based on Julia's condition (and now Carter's, too). I hate the lingering doubts we have when it comes to discipline under our circumstances. I hate wondering if we're doing enough to keep her safe. Is any of it enough?

.... probably somewhere in the middle of it all.

My mind and heart are wrestling with all the unknowns again. When Dr. McLean was reviewing her case with us yesterday. I was struck when he said, "but we still think her prognosis will be good". I don't let myself think about the variables very often, but they are still there- 40% of patients with anaplasia have a recurrence within two years, others down the road. There are around 20 kids diagnosed each year, the cancer will return in 8 of them within 2 years. Then there's the long term effects. Everything that we are doing to save her life comes at a cost of future cancers, infertility, sudden heart failure, liver damage, etc. When she received her blood transfusion, I had to sign a release that I understood there was a 1 in 200,000 chance of hepatitis, a 1 in 900,000 chance of HIV, etc. I don't like numbers anymore. Her chances of having this cancer were 1 in a million.

Nothing we do is safe anymore and I hate it, still. We can't focus on these things and I've found we don't. There are actually days having a child with cancer feels 'normal'. I know that sounds totally crazy, but it just takes over and replaces your life in totality that you forget where the old you ends and the new life began. But I've found we can't ignore it either because it is always there and will continue to come up. I have to find a place for it where the unknowns of the future can reside but our faith and trust in God is much bigger.

As we spend this week quarantined, it really hit home with me that we are living so much of our time waiting for things to be different. We are living in expectation of our life returning to something we recognize. We can't keep living this way. It isn't fair to anyone. This is our life, what we see right now. None of us are promised tomorrow and I don't want to live life waiting to start living. It's a subtle difference, but it's there.

This new life is so different from what we're all used to. We desperately miss our friends. Julia says daily, "Mommy, I need to see my friends." My heart is breaking for her. It is a void I can never fill. We miss feeling a part of our community going to the park, library, church, etc. We miss the schedule of our days and knowing what to expect. The rhythm and flow is completely absent. In my mind I am just waiting until it changes, but I can't keep living that way. We are missing the things we love about summer- the waterpark, the pool, playdates, amusement parks, cookouts with friends, and playgrounds. It is hard not to feel cheated. And then I feel guilty because I am SO thankful and grateful to God that both my children are here with us.

It really hit me when I was reading Pablo's blog, a 6yr old who lost his battle with Wilms on June 27th. He had good days and bad days and they made the most of them all. He was running around at the park with his friends feeling fine just one week before he took a turn and lost his battle. His family has no regrets for how they spent their time. I don't want to waste our days waiting. I want my kids to have good memories of this time we spent together during treatment. I want to know we did the best we could with all of it. I want our love to be enough, our care to be enough, the chemo to be enough...

Lord, give me the energy, enthusiasm, and strength I need to embrace this time in our lives. When fear creeps in, replace it with Your Truth. You have been faithful through every step of this process and we know You will never leave us. We know there will be suffering, but we are promised Your protection, provision, salvation, and love.

This world is not enough, but God- you are always enough.

St. Baldrick's

St. Baldrick’s began as a casual conversation between friends and has exploded into the world’s biggest volunteer-driven fundraising program for childhood cancer! In nine years, events have taken place in 18 countries and 48 US states, raising over $50 million, and shaving more than 72,000 heads.

What is St. Baldrick's?

St. Baldrick's is a volunteer-driven fundraising event for childhood cancer research. Thousands of volunteers shave their heads in solidarity of children with cancer, while requesting donations of support from friends and family.

At a St. Baldrick's event, something amazing happens. People who normally shy away from the very thought of childhood cancer find themselves compelled to support this cause after looking into the face of these brave children who are smiling broadly as their friends and family members proudly display their newly shorn heads.

Volunteers and donors see it can be fun to support a serious cause. Young cancer patients and survivors see how many people care. And researchers see St. Baldrick's funds helping to find cures!


We are proud to say, Julia is now one of St. Baldrick's Honored Children...

Chemo Monday (Week 14)

Our last night in DC, Carter started feeling sick. He has a fever and is very lethargic.

Coming on this trip was a calculated risk for us. But a risk that we and our doctors decided was necessary and worthwhile. We have enjoyed our time away immensely. It has been a blessing to see so many of our friends and family- some we haven't seen in a long time. It was good for all of us. It was great to see so many of the people out there following our story and praying for us on a daily basis. Some we have met before, others we saw for the first time. It is humbling to know that so many people are interceding on our behalf. I pray God blesses each and every one of you and your families. Thank you for holding us up!

But now we are suffering the consequences of breaking out of our bubble. I took Carter to the ER when we got home Sunday night. They took him right back and took full precautions. After a full work up they told us he had a virus, possibly flu. They sent us home with Tamiflu and instructions on quarantine for our household. "No contact between the kids. Everyone wearing masks and gloves. Complete cleaning and disinfecting when moving from one child to the next. etc." After they read me the list, they smiled and said it would be really difficult, near impossible, to do with preschoolers. No kidding!
So we're back where we started this whole process. Just abiding. God is in control of this, too. No amount of control or worry is going to change it, so we have to just accept it. I have to say it is almost surreal. I came home to mountains of luggage, one sick child, and one extremely vulnerable child. When it was just our family and we were all healthy I felt safe in our house. Now that has been invaded, too. We had a few moments of 'what now?!" then we just moved on. We have to just do our best for each of the kids and trust that God has all of us in His grasp.

Carter rarely if ever tells us if he doesn't feel well. But it is very easy to tell because the child that never stops moving is stopped in his tracks. He actually fell asleep Sunday afternoon. His only symptoms so far are lethargy and fever. We pray he doesn't get worse.
We have been keeping him confined to one chair in the living room and his bedroom. Billy and I will likely wash the skin off our hands and arms sometime in the near future :) and Lysol is our new best friend.

So that's where we were going into chemo today.

It feels like such a long time since we came to the hospital. Julia was happy to see everyone again and them her. She was painting in no time and driving the firetruck all over the clinic.
We were glad to have Ms. Karen back as our nurse today, though Ms. Diane stopped in to catch up. Julia had her physical with Dr. McLean before treatment. He was happy with her progress and the positive effects of the blood transfusion. She has had mostly good days. The past week she has had a lot of jaw pain and achiness, but overall has done well. Her labs today looked good. Her white blood count has come up from 1.9 to 3.7 just since the end of June! And her red blood count levels are all holding strong. Praise God!

Today she received vincristine, dactinomycin, and zofran. This week is her first of four high doses of vincristine. Because of her age jump and the higher dose she is actually receiving double the dose strength she started with. Dr. McLean spent a lot of time talking to me about this. They expect her pain to increase steadily. He said not to be surprised if it prevents her from eating and limits her ability to walk in the next weeks. The dactinomycin will also likely make her nauseous.

She cried today for the first time during treatment. When Ms. Karen started her port access, she lost it. I hate having to force her to do this. She said having the access pushed in really hurts. This is the first time she has ever talked about how all this feels. My heart aches for her having to go through this process. Julia, you are my hero.

Please pray for strength for Julia and minimal side effects. Please pray for Carter's quick healing and protection for all of us from illness. Also for strength, encouragement, and faith for all of us during the next weeks recovering at home. Thank you for your continued love and prayers during this long journey...