A Fresh Week

Julia had a rough time last week.  Fortunately the vomiting did not return, but her pain remained.  We are still not quite sure how she's feeling which can be frustrating.  The oncologists tell us the most likely source is bone pain.  She has been crying, whining, yelling, and angry most of the week and weekend.  The pain medicine helps some.  At times I think she is doing more than she is able.  Our situation is a catch-22... on one hand she is resilient to her situation because she does not fully understand and just adapts, but on the other hand she pushes herself to do too much which creates meltdowns.  We have been letting her self-regulate her activity, but we might have to intervene a little until she recovers more.

She continues to struggle with eating.  Her appetite has remained strong through most of her treatment.  She has days when she eats nothing, but overall she hasn't lost her appetite.  Food, however, has lost its appeal.  She tells us she's hungry, we ask her what she would like, she doesn't know, we spend several minutes deciding, we make it, she takes a bite, it doesn't taste right, she cries, and repeat.  I feel guilty complaining that she wants to eat because so many chemo patients struggle with severe weight loss, but this process is wearing and goes on all day long, everyday.  She didn't each much the end of the week.  Sunday morning she woke up asking for scrambled eggs.  I was extremely doubtful, but made them anyway.  She ate them and asked for more, and ate those, too! Over the course of the day she ate five eggs!! Yippee! Now, hopefully this nutritional boost to her system will last a few days.

So the food issues in our house will likely continue for some time.  Nothing has been easy with these two.  Well, except nursing for the first year.  After that we just went downhill.  Carter didn't like baby food and had oral aversion as a baby (usually only found in kids who had breathing tubes- not him). The first few years he had a sensitivity to milk and an allergy to apples (I ate applesauce everyday of my pregnancy- don't recommend it). Then he had a crazy virus at 2 years that led to an array of health and feeding issues.  Then he entered food therapy for his small size and lack of interest in food at 4 years. (He honestly sees eating as a waste of time.)  And now Julia's cancer and chemo.  I say all this, not for pity, but because its hard to keep a positive outlook when all the parenting books and advice go out the window. This appears to be where we live in the feeding department.  It seems we are always trying to undo habits or create new ones.  The one bright spot in our family is that our kids' natural desires are for healthy foods, though in random combinations.  So I guess we can just pray that in the end they both come out with some sort of healthy eating habits- as odd as they may seem now...  and try to think about it as little as possible.    

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Today we headed to the dentist.  It is one of their favorite places to go, which really says a lot for this office.  They were incredibly helpful in working with us to make this possible for Julia with her health.  They both did great and got good reports.

They are both so cooperative and agreeable, which just adds to the doting by the staff, and makes the kids' day even better.  They look so cute in their little sunglasses...




We spent the rest of our rainy day reading books, doing schoolwork, playing musical instruments, doing teaching trays, and playing board games.  And the whining and screaming was minimal.  We are hopeful that this week will be better than last.  She goes in for labs on Thursday and we'll find out where she stands.  Hopefully we haven't lost too much ground with this most recent treatment.

Now they are both sleeping peacefully.  Julia actually fell asleep in my arms as I read her books...

I love the way Carter 'tucks in' everyone in his bed and hugs his bear...

...even the upper deck fans get a blanket :)

So now we're off to sleep, thankful for a better day, and hopeful for tomorrow.  Praising God for all He's teaching us through these trials and seizing the joy in each day...

Happy Birthday Daddy!!

The kids have been eagerly preparing for Daddy's birthday all week. Their anticipation and excitement is absolutely adorable. It has been the perfect distraction for Julia. She is doing better. The vomiting has stopped and we are so thankful. She is still tired, not very hungry, and very whiny and irritable; but overall doing well.

They painted a birthday banner...

made cards, wrapped his presents...

and baked (and decorated) a yummy chocolate cake...
They are so happy the day is finally here. We baked the cake on Tuesday and Julia has asked to eat it every few hours since :) Daddy came home today for lunch, and they hid, so they could surprise him.

We enjoyed a yummy lunch and it was finally time for cake...

Happy Birthday Daddy! We are so lucky to have you! You bring so much joy, laughter, silliness, and fun to our lives. Thank you for working so hard for all of us at work and at home. We are all so blessed and love you very much!

Chemo Monday (Week 20)

Monday we headed back to Brenners- Carter in tow- expecting just a physical since her counts are so low. Her ANC was 360 last week and needs to be 750 to get chemo. She was fine with going today and didn't get upset.
We were very excited today to be taking a huge donation for the birthday closet. Our sweet homeschooling friend Jenna is an Usborne book consultant. God put it on her heart to help brighten the days of kids at the oncology clinic and she came up with the idea for a summer reading drive. She had 6 families of children read books for 2 weeks and raise pledges. Those children raised over $1600- amazing! We then chose kid kits from the Usborne site for boys and girls of all ages- dinosaurs, trains, jewelry, science, music, etc.- dozens of them!!
The kids were so happy to be the 'delivery men' of such an exciting gift. The nurses were thrilled to stock the new goodies :) Thank you to all who played a part in making it happen. you will put a smile on the face of a very deserving child :)

Ms. Michelle was there today to help with Arts for Life. I love that they include the siblings in everything they do. Often times the patients don't even get a chance to participate, but their siblings do which gives them a creative outlet, something fun to do, and other people in their situation to talk with. Everyone in the clinic goes out of their way to include siblings in the process of cancer treatment. They also have extensive sibling support groups and activities for older children. It really is an important part of the process.

They checked us in and did Julia's vitals (Carter's too- just to be sweet.). She has actually gained 2lbs and is now 32lbs! (Carter is holding at 40lbs, but has grown to 44 inches.) Then they did her physical, put in her port access, and drew labs. Here she is holding her 'tubie'- as everyone calls it- attached to her port access...
We waited for a little over an hour for her labs to come back. The kids had fun in the playroom playing board games and playdoh. Then the nurse came out to say her labs were back, but they were conferencing on the results. It turns out her ANC has made a huge jump- YAY! and has come up to 759! We were very excited to be out of the danger zone. However she is now only 9 pts from the line, so they had to decide whether to proceed or not. The decision was made to go ahead. She received dactinomycin and vincristine today.

As we were leaving Colin was setting up music class in the lobby. We love Colin and the gift he has for brightening these children's lives. Here's their impromptu band jammin away. It was really sweet to watch and he is so encouraging of each one of them.
If you have the chance, please say a prayer for the teenage boy in the baseball cap. I don't know his name, but God does. He is in the throws of chemo treatment right now and having horrible side effects- has barely any voice left, has to use a walker, continues to lose weight and is now down to 85lbs. He was the most gentle, loving, and generous kid. He touched my heart in the brief time we were with him and I know he could use some prayers.

It was a long day, but we are happy to be finished with another treatment. Julia came home and napped and was feeling good last night. Carter took her for a spin in the truck to make her happy. He's such a sweet brother...

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Today has been rough. Julia slept well last night, but woke up this morning throwing up. She threw up every medicine I tried to give her and finally kept down the second dose of zofran which helped. She hasn't wanted to eat for the past two days and is just feeling crummy. She has been crying and yelling most of the day. We were all very happy when she took a 4 hour nap this afternoon. I am happy to say she ate some noodles for dinner and is now outside playing with Daddy and Carter. Hopefully the worst is over for this round and she starts feeling better soon.

They will check her counts again next Thursday. She is scheduled to go back for chemo on September 14th and will also have an echo, chest xrays, and ultrasounds to see if the cancer has returned anywhere else and to check for heart damage from the doxirubicin. This is by far one of the hardest parts of all of this. It is the thing you can't get away from. It is here for life and we must find a way to live with it. It feels like a leash that holds us all down. And it never goes away.

I am so thankful we caught her cancer as early as we did, especially because it is the aggressive form. I am so thankful for a successful surgery. There are many other children whose tumors cannot be removed for a variety of reasons. I am so thankful for how well she is handling treatment.

But it is the lingering uncertainty that eats away bit by bit. Most of the time I don't even realize it. It usually hits in waves for a night and then subsides for several weeks.

The Wilms' community is rather small (thankfully) and there are many support networks for encouragement and information. These have been a huge blessing to us. But at the same time these children become a part of you- their families, their stories, their illness, their lives, their sweet faces. There are so many cases where the cancer returned a year later or three years later and the the ante is raised- more surgery, heavy chemo, radiation- and so many children lose their battles. I try not to dwell on the loss, but at the same time these children become a part of you. They are young children, just like mine and they should never be forgotten- just because its hard for us still here to remember. If it were my child, I wouldn't want people to look away, just because it hurts.

So please pray for clean scans next time and peace in our hearts as we learn to live in this cancer world we are forever a part of.

End of the Weekend

It's been a good weekend around here. Carter had a great end to the week... Thursday at the pool for playgroup, Friday at the water park, Saturday playing baseball with Daddy, today in his new kindergarten class at church, and tonight at the last Sunday night Hopper's baseball game. It was his kind of weekend! (Thanks to all of you who took him along with you!)

Julia stayed in- and I say with mixed emotions- she is fine with that. It can only be by the grace of God that a 3 year old can watch their brother climb into a van with her best friends and head off to the water park for a day of fun and dippin' dots and just wave and smile. She continually amazes me. She has been feeling pretty good. She still has the jaw and teeth pain and gnaws on her hands a lot. Her appetite has been insatiable, unfortunately her desires are hard to determine. When we do find something though, things are good. Her requests for food come about every 20 minutes, like clockwork. I don't know where she puts it!

She has been fever-free all week. Thanks for your prayers! She is still compliantly wearing her mask, though she hasn't really left the house much. Tomorrow we head back to the hospital. They don't expect her blood counts to be high enough for chemo, but she's due for her weekly physical and labs, so we will see...

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And we had a major breakthrough this week. Look who cleaned his plate!! ....

.......FOUR nights in a row!!!

Those of you familiar with Carter's eating issues know how utterly amazing this is. This is the kid who survives and thrives on water and air.

A little history... He had a severe GI virus for 6 weeks when he was 2 that caused him to lose 20% of his body weight, stop eating, and get really sick. This created numerous issues that combined with his small size, picky eating habits, etc. created a perfect storm. Here's what our meal times used to look like in some earlier attempts at meal times. He spent time in food therapy and was released last spring. They were really a great resource (didn't mean to make it sound like jail!). He's been doing so much better, but this is a first for us. Our little 40lb, almost 6 year old, must be growing :)

Friday Favorites

Time for Friday Favorites again.

OUR TOP TEN KIDS BIBLES/DEVOTIONALS/BIBLE STORIES

This is by no means an exhaustive list, just some items that have worked for us with 2-5 year olds. We are just on the cusp of really going deeper with Carter and I've been thinking back to what we've liked along the way. There are thousands of choices out there and it really takes time and effort to sort through it, so I hope this helps with some ideas...

1. The Beginner's Bible
This is a staple in most homes and was the first Bible for both of our kids. We started them at 2yrs and would read 2 stories before nap and 2 before bed. We read through the Bible 10-15 times by the time we're finished, which really gives them a good overview and familiarity with people and plots.

It amazes me how such a simply written text can be so powerful. This is the Bible we were reading with Julia during her surgery and treatments over the summer. It was Divine power the way God would speak the exact words we needed to hear at that exact moment through a toddler's simple Bible.

2. Scholastic Read & Learn Bible
This was their second Bible around 3-4 yrs when they started wanting more information. I like the writing style of the Scholastic Bibles.

3. The Lion Read & Know Bible by Sophie Piper
I had a lot of difficulty finding a next step Bible for Carter once he turned five. There's a pretty even split at this level- they are either 'learn to read' editions or actual Bibles. I wanted one more step before we move up to a traditional Bible. This one has been wonderful. It fills out the stories with even more detail and character depth. It also includes teaching sections on Bible anthropology, geography, and history. I love the writing and teaching style of this one.

4. God's Mighty Warrior Dev Bible by Sheila Walsh
We use this devotional as a part of our school time. It includes Bible stories, devotions, and activities to do together.

5. God's Little Princess Dev Bible by Sheila Walsh
They make one for girls, too.

6. Jesus Wants All of Me by Oswald Chambers
I picked this up at a Christian bookstore on sale for $4 at the recommendation of a friend. It is a devotional with a short paragraph, picture, and a Bible verse for each day. It is written for Children but I have found it very challenging and convicting for myself. I recently discovered there are actually a series of these books. When we get a solid grasp of this one we'll have to move on- that might be awhile :) This stuff is deep! We read each entry in the morning at breakfast.

7. Step Into the Bible by Ruth Bell Graham
This is a family devotional book we are actually just starting, but I'm excited to use it.

8. Big Thoughts for Little Thinkers by Joey Allen (The Scripture, The Mission, The Trinity, The Gospel)
This is a 4 book series of little books on really big topics. They do a great job of explaining the fundamentals of Christan theology in words and pictures, for preschoolers and elementary children. These are words our kids here so often, but how often are they actually explained?

9. Stories From the Bible by Kathryn Smith (Joseph's Coat of Many Colors, David & Goliath, Jonah & the Whale)
These books I actually found at the grocery store for $2.99. They are storybooks from Parragon Press that retell some of the most well-known Bible stories. Being a teacher, writer, parent, and book lover I am constantly noticing the writing style of books. So many children's books miss the mark when writing so that children understand. I am often changing the words as I read to them. This is one series that gets it right. I like the playful illustrations and imaginative use of words and feelings.

10. Designed by God So I Must Be Special by Bonnie Sose
This is a great book for every age. A reminder to all of us about how much God loves each one of us and how he designed us to be exactly who we are.

And one extra, the Anytime Bible by Mary Manz Simon. I've heard good things about this one for use with primary age students. It has great discussion starters.

What are your family favorites?

Hope

Hope.

It's everywhere, if you know how to find it. Some of us have hearts and lives full of it and others let it go long ago.

In our life it has been the boat that has kept us afloat in some raging seas. It's true, hope floats :)

So what is it? Hope is the 'thing' so many people are looking for in life. This world is full of highs and lows, ups and downs, health and sickness, birth and death, prosperity and suffering. Yet some people are able to weather the storms without losing their focus, heart, and soul in the process. How?

Because they have hope. They know there is something greater than all of this. There is a better and perfect place at the end of all of this. There is someone working all things together in one great plan.

Lara wrote a great post about it just yesterday.

And in a Mercy Ship off the coast of Benin, Africa... Ali held hope in her arms and it smiled at her.

What is hope exactly? By definition it is to look forward to with confidence or expectation. What are you sure of, without a doubt, absolutely sure? Well, people may define it in different ways, but it all comes down to one thing. To have eternal and unfailing hope, we must believe that we were created by a loving God who holds us all in the palm of His hand and sent His Son to redeem us from this sinful world. Then everything around us falls away.

I read a post once, by a young mother of four girls... three here with her and one already in heaven. She found her eternal hope in an unusual place- the death of her newborn daughter. I encourage you to read some of her beautiful and emotional words, as God has put her shattered heart together piece by piece. (Her story is at the bottom of her blog.)

Our prayer is that each one of your hearts is filled and overflowing with hope, so that others can't help but see your light shine. Hope is the most valuable thing we can offer each other.

Life on the Inside

We've been spending our days at home since we discovered Julia's extremely low counts. The kids have been doing well. They have actually been playing really well together and have spent some serious hours engrossed in playing. Our house is hard evidence. Day after day in the house makes for some serious messes. I've been trying not to squash their plans too much, but must they really drag out everything?!

They've built some great forts, painted several masterpieces, setup a hospital with ambulance rescue service, and created some elaborate game about garbage trucks that involves all the trucks, dollhouses, kitchen stuff, and toys in the playroom. I am rejoicing in the fact that they are getting along and trying to overlook the mess- easier said than done sometimes.

Julia has been feeling pretty good- still tired, whiny, and achy- but overall good. She was so surprised to wake up from her nap and find this gift basket waiting for her yesterday. Some of our sweet neighbors stopped over to surprise her. It has a little gift for each day of the month to lift her spirits and give her something new to look forward to- what a neat idea!

When we do leave the house now, Julia has to wear a mask. I was worried she would be uncooperative. I explained to her why she needed one and she has willingly complied so far. The grace shown by children with cancer continues to astound and inspire me.

It really caught me off guard when I saw her wearing it for the first time. It was another one of those defining moments when reality settles so hard you can physically feel the shift. This is our child and this is all very real.
Each little thing that changes is one more step away from the healthy child we remember, another step deeper into the water... further from the shore that we knew as home.

Julia is handling the restrictions okay. She frequently says, "I can't do that because my chemo." She may not understand all the whys and hows, but she does understand the effects of all of this on her life. It broke my heart tonight when she said, "But Mommy when I wear my mask no one can hear me talk." I wish there were another way. It's hard enough to be isolated, then to lose your hair, then to have to wear a mask, then to 'lose' your voice. It's a heavy burden for such small shoulders to carry.

Carter is still have the hardest time with confinement. He just wants out. He wants to go places and see people. Probably even more so because of our vacation last week. He is very helpful and protective of Julia, but its still a strong desire of his.

We have eliminated pretty much all large group settings with kids. But there is one thing Julia has been looking forward to. For almost two years she has been counting down the time until she was old enough to go to Awana, like Carter. She has given up so much with this cancer that I really wanted her to be able to do this. Her doctors have encouraged us to find things that we can do to still give her a normal childhood and this was one of those things. Tonight was the first night of the year. I had it all planned out in my mind and we were ready. Julia was so excited singing and dancing around the house when it was time to go :)

Then we got there and they had changed everything- new rooms, new setups, new procedures- yikes! Time to think on my feet. Things went pretty well in the beginning. She was in the stroller at her own table, with her own supplies completing her craft. It wasn't long before the other kids were closing in with curiosity. Wearing a mask is like a flashing sign, especially to preschoolers. Fortumately next was large group time. They were introdused to the Cubbies' characters, their leaders, and procedures. They stood with their little hands on their hearts and said the pledge and sang their songs. It was very sweet.
The more comfortable she became, the more she wanted to explore. My anxieties began to grow and I just wanted to be finished. We disinfected and she had her snack and we headed out to get Carter. Their class was upstairs- an elevator and a narrow crowded hallway away. (They moved this year, too.) Standing in that line surrounded by noise and people was almost too much. Then you hear the teasing comments of others and I bite my tongue. Then Julia looked up at me waving her arms. Apparently several hours of wearing a mask in the heat makes one throw up... in their mask. And I still have to get Carter. Enough already! We were finally headed out and I just wanted to be back home.

Our outing tonight has given me a welcome change of perspective. Being at home is not captivity for us, but instead freedom. When we are home we are free to live our lives without constant threats, precautions, second-guessing, unknowns, and surprises. The kids are free to play and move around as they wish. We can each do our own thing or enjoy things together. It makes me think of the Christian life. So many people view Christianity as a list of DONT'S, but it is So much more than that! It is giving us the freedom to live out our lives in victory with God's wisdom behind us to avoid major pitfalls. Who wouldn't want that?!

So I approach tomorrow with a fresh face, excited that we are staying home (and Carter is going to the pool with his friends!). This season of our life is unique in many ways, but it is also a blessing in its own way.

Reality Strikes Back

I took Julia in for her weekly labs this morning. Our pediatrician's office has been great. They have standing orders to do her blood work and fax them to her oncologists on all the weeks she doesn't have chemo or other appointments. This saves us having to make the trip all the way to the hospital. They are great at giving us convenient appointments. They have a special private waiting room just for her. They keep one of the exam rooms clean so she is the first patient in it for the day. And the nurses go above and beyond to be sweet to her and shower her with stickers and 'jewels'. We are very blessed.
We went in this morning expecting much of the same. I was expecting low counts with all the fatigue she's been having. Her energy level is not as low as it was in June, so I was expecting things to be pretty 'chemo typical' for her. The last set of labs was at her chemo appt at the beginning of August.

Since her last round of chemo, her white blood count has dropped from 2400 to 1500 (normal is 4500-10,500). Her red blood count is down, but not at 'transfusion levels'. And her ANC has dropped from 1032 to 360. Yikes! The ANC is the measure of a type white blood cells (neutrophils) that indicates the body's ability to fight off infection. Normal is above 1500. Chemo patients try to stay between 500 and 1000. Below 500, is considered neutropenic and the rules and restrictions tighten.
Ms. Diane called this afternoon to review the results and I sensed the concern in her voice immediately. She wants us taking her temperature multiple times a day. Limit contact with others. Public outings only when necessary. She needs to wear a mask when in close contact with others outside the family. Wipe down all surfaces. And call if we sense any changes in her health. At this point she is not well enough to receive chemo. This is the first time that has happened. They will check her next Monday, but will likely have to push back her next round of treatment.

So we're back in the house. So far, it hasn't been too bad. We're all still riding the vacation high. it couldn't have come at a better time. We are so thankful for God's perfect timing- one week sooner and she would have needed chemo, one week later and she would have been too sick to travel. It was exactly what we needed and at the perfect time. But then God's provision is always just what we need.

We are so thankful to be going through all of this in the summer, rather than at the height of illness season. Staying infection free is saving her many hospital stays and additional suffering. We praise God for His continued faithfulness and blessings in the storm.

Beach Days.....and Back to Reality

The rest of our beach vacation went well. It was very relaxing and restorative for us all. The kids were great and had so much to do.

With three preschoolers in the house there wasn't much sleeping in going on. But early mornings can be easily remedied with some fresh-from-the-oven french toast casserole. If you want to try some you can find the recipe on my other blog.
With all the yummy food around, we figured we best do a little PT. This was the usual scene around the breakfast table, doing either P90X or 30 day Shred. With my sister and I and 3 kids it was quite humorous at times. This was the Ab Grinder workout. Every time Beth grimaced, Carter would copy the face thinking it was part of the exercise- hysterical. When she complained something was tough, Carter would say, "This really isn't hard." Somehow I think a 5 yr old it at a huge advantage!! It sure looked hard to me and I wasn't even doing it!
Anderson and Julia both love to pour and dump water and could do this for hours. Anderson has a fond affection for cups- they are truly his favorite toy. The first words out of his mouth in the morning are either 'cup' or 'hot dog'...

Julia learned to spin herself in the pool and happily twirled to the motown tunes...
We built some really cool sandcastles on the beach- complete with pools for Julia...

Julia was tickled with burying Daddy...
Does anyone else have a thing for drip castles? I love them! Now Julia does, too...
It didn't take much before Julia was asking to go back to bed...
She and I enjoyed a great mother/daughter outing to the local shops. She is so fun to shop with because she gets so excited about everything...

• "I just love this!"
  
• "Can you put this on my list?"
  
• "Mommy, I love being your sweet punkin."
  
• "But I can't just leave him here (the stuffed puppy). He will miss me and cry for me. And what if someone else buys him?"
  

The last one is very hard to say no to! She picked out a beach book and some shiny gems. She was very pleased with her treasures. It was a great night. She's felt pretty good besides the fatigue and achy jaw. There are times she has trouble opening her mouth, but fortunately the pain medicine helps a lot. Her eyelids have the 'chemo droop' now. It's especially noticeable in pictures...

On Thursday, the storm clouds rolled in to stay :( We had 9 inches of rain, just on Thursday!
We took advantage of the rainy weather and went to the aquarium. It's one of the kids' favorite places and since our zoo passes get us in free, we go several times during the week. Fortunately if you get there right when they open it is pretty much empty. We kept Julia in the stroller most of the time. It still surprises me how quickly she's gotten used to all of this. When we're out, she'll say, "Mommy, can you clean that so I can touch it?" Then she waits for me to break out the lysol wipes. It does make it easier on us to not have to be so vigilant because she understands her limitations and precautions. She's had to grow up really fast for a 3 year old.

There are so many cool animals to see- sharks, alligators, sea turtles, frogs, sea horses, sting rays, river otters, and these beautiful jellyfish. It is so much easier to appreciate them in here than in the ocean :) I have had a few too many stings in my days at the Jersey shore.
Carter learning about and touching the horseshoe crab...
Daddy petting the sting rays...
I love her reflection in this picture...

At the house there was plenty of time for games. And how can you say no to one more game of Hi Ho Cherry-O to this face...
We all read lots of good books...
The rain stopped for a few hours the night before we left, so we enjoyed some family time at the beach...
We all hold on to each other a little tighter these days...
Saturday morning we packed up to head home and decided to surprise the kids with one last treat and took them to play putt-putt. It was empty because everyone else was headed home, which was just what we had hoped. The kids were so cute...
We were actually really impressed with Julia. This was her first time really playing and she had par on about half the holes. She stuck with it for the full 18 holes and never got frustrated.
Sunday was our first day back to reality. We had lots of unpacking and catching up to do. I decided to invite the kids' friends over and they played contentedly all day.

Here they are in their space ship blasting off to Mars...