Oncology Update

The oncologist called this evening after reviewing Julia's weekly labs...

They are happy with the progress from her blood transfusion. Her red blood cell levels look good. Her white blood counts are holding around the same. They are not concerned about the high lymphocyte number. It is a percentage of the concentration in her total white blood count. Because she is neutropenic, her neutrophils are very low, therefore the other percentages have to increase in order to make up the difference in the total value.

Her ANC has gone down to 640 (500 is the 'danger zone', 1000 is 'free to participate in any activity without precautions'). We still have the go ahead to travel, but they want us to be very careful, limit her contact, disinfect surfaces, and avoid everyone who has been or is ill, or recently vaccinated. Please pray for protection from illness for all of us, especially these next two weeks.

Updates From Our 'Layover' at Home...

We enjoyed the rest of our stay in DC. Julia liked having Mimi and Grandpa to herself. When we told her Grandpa was on his way back to the house, she said, "Oh good! He's my favorite!"

They had a picnic lunch in the living room before we left for home...
She traveled well. We braved the traffic again. It's so frustrating when it takes almost 2 hours to go the first 20 miles. But it was smooth sailing after that. Julia even took a nap in the car (very rare for our two). When I told her Daddy was excited to see her, she said, "I'm excited to see him, too. He thinks I'm his sweet punkin." She says the sweetest and most encouraging words. It is definitely one of her gifts. I love that she has such an optimistic and uplifting spirit. It is one of the keys to life and I pray it continues to grow strong.

I enjoyed the quiet time to listen to my own music instead of the DVD player :) I am still really enjoying David Crowder Band. The song, The Glory of It All really speaks to my soul these days. It has become the anthem of our cancer journey. It is the song we listened to in the surgical waiting room back in March as this all began. It is the essence of the faith we cling to and that carries us.

Oh, the glory of it all
Is He came here
For the rescue of us all
That we may live
For the glory of it all
Oh, the glory of it all

All is lost
Find Him there
Find Him there
After night
Dawn is there
Dawn is there
And after all
Falls apart
He repairs
He repairs

Oh, He is here
With redemption from the fall
That we may live
For the glory of it all
Oh, the glory of it all

After night
Comes a light

Dawn is here

Dawn is here
It’s a new day, a new day
Oh, everything will change
Things will never be the same
We will never be the same

Tears stream down my face reading them even now. I am so thankful to say that even in those darkest hours we felt God's peace and could say with conviction that everything that happens is for God's glory. I know that with every fiber of my being. I believed it before and I still believe it today. Without that truth there is no hope or peace in this world.

Being in that waiting room that day with Julia in surgery, so many questions, so many risks, and the reality of cancer upon us; it was the closest I have felt to the disciple Peter when Jesus asked him to get out of the boat and walk on the water. We were taking that leap of faith and stepping out even when we couldn't see solid ground. As scary as it seemed at the time, I would rather be on the water with my Savior than on solid ground without Him.

The words of this song have become even more meaningful as time goes on. God continues to prove Himself faithful and trustworthy. Our faith continues to deepen. Our testimony grows stronger. Our witness shines through. His grace covers ALL and sustains us each during the hardest of times. And we know now we will never be the same, but we will ALWAYS be His.

********************

Julia and Carter were happy to be back together again. They look like old friends sitting on the front porch together...

Ally, Emmy, and Tammy are here for a few days to play with the kids while I pack for our crazy road trip. They are having a ball playing school, dollhouse, dance party, baby dolls, and enjoying the new slip 'n slide....
....even Daddy!!!
We have had a busy few days as we get ready for our road trip: pit stop in DC and the Evening Parade, trip to Penn State where the kids are in Erin and Mike's wedding on Saturday, then back to DC for Grandpa's retirement (and a whole lot of Daddy flying back and forth to work in between). Packing for so many events and locations is proving to be quite a feat, plus the errands and household chores. It will be a relief to finally be on the road Thursday.

I am happy to say that my visit to the endocrinologist and labs on Monday got me an increase in my thyroid meds- yipee!! Julia went for her weekly CBC this morning and her hemoglobin and red blood count are back within the normal range- the blood transfusion was a success! Her white blood count is holding steady at it's low. Her lymphocytes (type of white blood cell) were high this week. We are awaiting a call from oncology to see if we need to do anything. Please pray for her to remain infection free. The H1N1 flu virus has descended heavily on our city this past week. We are living in virtual quarrantine and taking drastic contact precautions. We are actually thankful to be getting away for a few weeks.

Weekend of Memories

Our trip was smooth except for the last 10 miles. Don't you love when it takes an hour to go 10 miles? Craziness. We always drive against the rush hour traffic, but now they have the Woodbridge construction- yuck. Julia was a great little traveler and was very excited to see her Mimi and Grandpa.

Julia loved waking up to the serenade of the Commandant's Own Marine band. She stood at her window and watched their rehearsal.

Amy arrived from CA and we went up to the metro to meet her. It was so great to see her again after 15 years! Can you believe high school was that long ago?! We picked up right where we left off and had so much fun catching up. Friday afternoon we met up with our friends Tommy and Bernadette for dinner. The old gang, back together again.

Saturday morning was the grand reopening of Eastern Market. It has been an icon in DC for over 100 years and it was gutted by fire 2 years ago. Saturday they were back in business. It was a fun morning. There were so many amazing vendors with jewelry, bags, artwork, dresses, hats, flowers, and anything else you can imagine. It is such an inspiring place to be surrounded by so much talent.And how can you not smile at flowers like these?
Saturday night it was time for the retirement party. Our high school band director is retiring after 36 years. We are so blessed to be able to be a part of his special day and it was a wonderful excuse to get together again.

Here's Amy and I ready for a night on the town... Me, Mr. Brown, and Bernadette....

Rod, and I...
The evening was a wonderful celebration of touching tributes from his colleagues, family, students, and friends. He was so surprised by the party and even more to see so many of his past students. It was a wonderful walk down memory lane in pictures, songs, and video. He has had an inspiring career that has touched the lives of so many with his integrity, work ethic, musical talent, knowledge, drive, and inspiration. His legacy was seen across the hundreds of faces in that room.

After a fun night of reminiscing, delicious food, dancing, and laughter we headed to the Silver Diner. This was our old after-football games hangout...

It was a great evening catching up, sharing memories, and hearing about everyone's adult lives. We ended up being out until the wee hours of the morning. Here's the gang:

Tommy, Amy, David, Jamie, Bernie, Rich, Kara, and me...

It was a weekend I won't ever forget. These people are such a part of me. High school was such a crazy time in our lives. We saw each other through laughter tears, challenges, growth, victories, failure, and so much fun. Those years were the most alive I have ever felt in my entire life and I cherished all the opportunities and experiences we had. It sounds corny, but thanks for the memories! I love you guys and look forward to seeing you soon. (It won't be 15 years this time!)

Home Now

Julia's blood transfusion went very smoothly. She didn't have any reactions to the blood products. She watched Noggin on TV for the first hour and then napped for an hour. They brought her dinner around 5pm and she finished around 6pm. We were out the door in no time and headed back home, finally. This is not at all how I thought the day would go when we pulled out of the driveway at 8am.

So now I am packing, cleaning, and organizing like a crazy person. Julia and I head to DC in the morning (shhh Carter doesn't know I'm going to Mimi and Grandpa's- he just knows I'm going to see friends). I'm really looking forward to seeing all my best friends from high school whom I have not seen in 15 years!! It will definitely be good for my soul :) Carter and Daddy will be enjoying lots of fun guy time this weekend.

Thank you all for your prayers, emails, and phone calls today. We really appreciate everything.

Transfusing...

They started Julia's blood transfusion at 3pm. It is set to take 3 hours. To all of you out there that donate blood, thank you.
So far she is doing well. She is being monitored every 15 min and I have to watch for reactions. She is doing good and has been eating and watching Noggin all afternoon. She is currently giving her nurse a lesson on how to put pacifiers in your toes- that's JuJu :)

Prayer Request

It started out a normal day...

We were all up at 7am and getting ready. We took Carter to VBS and Julia and I had some errands to run- gas station, drug store, pet store....

I called to check in with nurse Dianne about Julia's fatigue and she said she wanted to get labs done. She called our pediatrician, faxed orders, we got an appt, drew the blood, ran the results, and had it faxed to Brenners in under an hour- talk about seamless care! Her white blood count is 1.7, her ANC (an indicator of her overall immune strength) is 765. Most chemo patients are in the 500-1000 range. They take action below 500, so she's doing well. Her hemoglobin is 8 which explains her fatigue and weakness this week. They give a blood transfusion in the 7 to 8 range depending on the child's condition. The decided Julia needed a boost. Dianne wants to give her body some help in rebuilding and really wants us to be able to go ahead with our travel plans over the next few weeks. This boost should give her back her energy and spunk.

So now our to-do list includes a stop at the hospital for some blood (the new normal).

They called over to the oncology floor and got us a room. We ran home to pack a few things. The new stroller also makes a greet bellhop :)
We checked in at noon and they've accessed her port and drawn labs. Now we are waiting for the type and cross match to come back and then they will start.
It should take about two hours to do the transfusion. Please pray for no allergic reactions in this process and a safe transfusion. We hope to be out of the hospital by dinner time with a much perkier JuJu :)

Summer (Home)School

I get questions all the time about what we're currently doing with our homeschooling. I have posted before about some of our materials and lapbooks we've been using the past 2 years. Here is where we started last year.

Everything school-related was put on hold for the first month after Julia was diagnosed, but we are back in the swing again. During the past year we did a combination of grade level curriculum, unit studies, and lapbooks. Our summer plans have been slightly different. I needed something easy and that required little or no preparation. At this point in our lives it was more important for Carter to have a set routine and to be challenged and engaged, so here's what we're doing for the summer. We usually spend 1-2 hours in the afternoons 4 days a week doing school. At this point from an assessment standpoint Carter is finishing up kindergarten, but he will technically by state school standards be a kindergartner in the fall.

CALENDAR: We start with the calendar and weather activities. We talk about days, months, math, weather, holidays, patterns, etc. I thought it was neat Carter decided to make up a new addition for summer afternoon thunderstorms. He didn't like labeling a whole day rainy for a short storm so we now have little lightning tabs to add for the storm days.
BIBLE: Then we do a Bible activity. Right now we are doing My Big Book of 5-Minute Devotions. It is a great combination of animal science and behavior with a scriptural and character message. The questions with each lesson have been good discussion starters.
PHONICS: These came as part of a Hooked on Phonics grade level supplement pack. We are using Grade 1 Reading Comprehension and Spelling. Each activity is 2 pages. Carter has enjoyed the illustrations and likes the sticker reward chart at the end.
READING: And the old standby... we work daily on sight words and primary readers that we borrow from the local library.
MATH: This is a new book we started for summer. Each lesson is a half-page with 1-3 problems. These have been great math starters. They are challenging to him (it's the 1st grade level), but short enough that he is not overwhelmed. He has been able to do 80%of it by himself so far.
We started using the Horizons Math Kindergarten curriculum this past January. It includes a teacher's guide, workbooks 1 and 2 and basic manipulatives. We are completing book 1 next week. This series is colorful, quick, and great for kids who enjoy math. It has a spiraling approach built in that teaches a new concept and then presents it at set, spaced intervals to check mastery. It has been just enough of a review that Carter is not bored by the repitition and it is spaced appropriately so they do not have redundancy. I am very pleased with how well he's doing with place value, addition of double and single digit numbers, geometry, and skip counting. The other day he counted by 10s to 420 and surprised us when he counted by 20s. He definitely has his parents' mathematical minds.
Here are the manipulatives we use most often in math: geometric solids (Oriental trading), pattern blocks, addition flash cards, Jumbo-netics (IPlay), and money (not shown).
We are just beginning to do word problems as a guided activity to work on his problem solving skills, visual organization, and higher level thinking.
SCIENCE: I found this workbook at a teacher store clearance for $4. It is essentially a primary textbook that covers plants, animals, human body, earth science, and states of matter. Each chapter is divided into 6 lessons with text, illustrations, and activities. It is black and white and basic, but a good overview of the topics we have covered this year. It also includes a true/false test at the end of each chapter.
We also use a variety of science manipulatives that Carter loves: the SmartLab Human Body, What's That Sound? (Discovery Toys), color paddles (Oriental Trading), life cycle animals (OT), and Whose Home? (LeTrend)
I had to laugh when we opened this new set. I found it at a clearance sale and apparently it had been opened by someone. Ironically enough the kidneys are missing. When we first opened it, Carter laid out the poster and book included and was dissecting the model. He said, "Mom, it's missing kidneys, just like Julia." We're working on getting some from the company. Hopefully we don't have to go on a donor list :)





SOCIAL STUDIES: Our social studies curriculum is usually books and computer games. However we have worked a lot on geography this year. Carter loves maps and atlases. We have just started our second Map Skills workbook and have been very pleased. This is one subject where it's good to mix publishers to get multiple approaches and topics. They are all so different.
These manipulatives have been some of Carter's favorite play things since he was 2. The USA puzzle he has been putting together independently for 3 yrs and has known his states almost as long. We are now working on capitals. The World Atlas was a library book sale find and is full of information. We read and study a different continent each week. The double-sided, wipe-off maps are from the Target dollar bins (they are out at back to school time) and are wonderful. We are working on continents, oceans, and states.
FUN: We found the game, Match It! (LeTrend) on a recent trip to a teacher store. It is great!! I love logic and strategy games and so does Carter. This takes 2 minutes to learn and all ages can play. You match the sides of the cards by either color or pattern. The first one to play all their cards wins. It is a great precursor to the game SET. At the end of each school day we play a 'best of 7 series' and I must confess I am currently down by one to my 5 year old!!

I hope you have enjoyed this little peek into our school days. I share this because as a homeschooling mom I have benefited so much from the experiences of others. There is no one way or right way and every child learns differently, but I love learning about new ideas from other families. There are millions of products out there and none of us has the time to browse them all, so share your ideas, too! I hope this is encouraging and not overwhelming. This setup has been so easy for us this summer- which we SO need right now and is covering a breadth of topics and skills each day.

We also have been using a positive reinforcement chart. We made a sticker chart for attitude, diligence, cooperation, and task completion. If he has a great day in all these areas he gets a sticker. When he has 5 stickers he can pick a prize from the goody bag (treats and dollar store items). This has been a wonderful addition. We had some trouble getting back into the routine after Julia's diagnosis. I wanted to motivate him in a positive way and refrain from daily battles of the wills. Since day 1 this has worked every time :) Yipee!! Every classroom teacher will tell you this is key to motivating student behavior and the same holds true in the homeschool classroom.

What a Weekend

Friday was really hot but we needed to get out of the house. It was a great day for the pool. The kids were happy to be doing something, but Carter wanted friends to play with. I knew Bekah had her two, plus Annmarie's- jackpot: 1 phone call = 4 friends. We headed to the pool for a splashing good time. It was constant action and excitement. They were laughing, dancing, singing....

(Bekah leading the Hokey Pokey)

chasing, swimming, pretending, kayaking...

Julia wasn't quite up to all the action, but enjoyed watching and the company of her friends. We are starting to see the impact of this round of chemo.
It's been a tough week for her. She is still complaining of some pain and spends several hours a day crying, just wanting to be held.

Saturday was my birthday. I'm the big 3-3 now. Birthdays are always exciting to the kids and I love their desire to celebrate. They also love any excuse to make cupcakes and icing. It is so hard to keep them from sneaking a taste. They really miss licking the beaters. (It is especially dangerous for Julia because of e.coli and salmonella. Besides her compromised immune system, her one kidney could be damaged by any infection.)

Billy and I enjoyed a date night. We had a yummy dinner at P.F.Changs. (They are running a great deal right now... 4 courses for 2 for $40!) Mmmmm.......
The highlight, though, was the after dinner entertainment. While we were out, the kids rehearsed the birthday song, complete with musical instruments. It was the sweetest little band I know!

Then on to cupcakes and ice cream, mmmm...

On this birthday I am most thankful for my family, my friends, and my faith. It has been quite a year and our world has been spun around and dumped on its head several times, but those three things still stand despite the turmoil. This is the best gift!

On Sunday, it was time to celebrate Daddy. After church, we had tickets to a Grasshoppers game. Carter and Daddy went early to play catch on the field before the game. I brought Julia for the last half. We've found we have to really limit her activity to one short outing a day and have to carry her while we're out. It was a great game. They came back at the end of a losing series to beat Kannapolis with a home run and 3-run homer. Good baseball, good food, good times.

After the game Babe Ruth and Yogi Berra, the team's black labs, play fetch and run the bases.

Then it's the kids' turn. Here's Carter rounding second. he's getting faster every time. He can't wait to start coach pitch on Wednesday.

It's been an emotional weekend, Lots of ups and downs. It seems the farther we get along this 'cancer road' the further we get from normal. Our life swings between two very opposite sides- the normal/old life and the life with cancer. It seems the more comfortable we get on one extreme the harder we are flung back to other side. We have to make our way in the middle, with both, like it or not. It is just hard to mesh them all together sometimes. It has been a nice break not going to the hospital every week, but on the other hand Julia is feeling much worse and is very weak. We try to treat her as normal as possible and then realize she isn't physically able to do something. We go somewhere trying to resume our old activities and realize along the way ut is not the same or won't work. We struggle with Julia's emotions and fail to discipline her as quickly as we should. There are no clear cut distinctions anymore. Cancer has moved in and colored everything we live, think, breath, feel, experience. We can't separate it anymore.

Julia has been very weak the past two days and spends most of her time in bed or being held. She looks so frail. Even I am taken back when I see her. It shakes me to the core that she was (we thought) completely healthy just 3 months ago. So much has changed.
She's trying so hard to carry on as normal. This picture was at 10am this morning and she was just wiped out and hasn't done anything all day. Today after her nap she said, 'Mommy I'm just so tired even though I just slept."

Everything is still day by day and will be for a long time I think. I read advice recently from an oncology nurse who said, "Keep your head where your feet are." Cancer is so pervasive and invasive. The only way to live with it is day by day. You can't chase all the what ifs and entertain all the options. It is just right now- today's meds, today's decisions, and comforting her in the moment. This is just one of many reminders that the only one possible of looking at the whole picture, knowing all the details and the outcome is God. It is too much for any man to comprehend. All God asks of us is to be faithful in this day. Tomorrow will come soon enough.

Cancer is not something you can control either, obviously. As the mom of a cancer kid you become medical personnel, overnight. You have to learn this new language; devour the books and websites; study protocols and clinical trials; make decisions; organize appts and information; meet with countless doctors, specialists, and nurses; regulate meds; assess your child; track labs, counts, and symptoms; sterilize; isolate; nuture; comfort; and love you child. At the same time trying to create a normal childhood for them and care for the rest of your family. With all of these tasks you eventually start to feel an illusion of control and security. Then come the curveballs The swine flu is in our county, schools, and hospitals. Now there's e.coli in the cookie dough. Then your child starts having new reactions to the meds. There will always be something. Something unknown that cannot be controlled and you have to let go.

This morning Carter was off to Vacation Bible School. This is his first year and he really didn't know what to expect. His friends and leaders were so happy to see him when he walked in I think it started to win him over. When I picked him up he said, "Mom you were right. That was really fun!" Then he said, "I am signed up for next week, too?" No, just one but I know it will be great.

While Carter was away, I took Julia for a walk/run in the jogger. It was a good break (and exercise). It's very quiet when it's just the two of us. We took in the sights and enjoyed the flowers, clouds, water, rocks, frogs, turtle, and birds. It was much needed peace for both of us. God reminded me of His care and concern. As my heart and mind would worry, He would calm my fears. Even more tangibly, as I was running up several hills and would start to feel like stopping, the cool wind would instantly blow refreshing me enough to keep on. Isn't it just amazing that our God cares this much to meet us right where we are- each one of us? (Any of you who lives in the south knows the relief of cool wind in the heat of hot, hazy, humid summer.) His truth was driven home.

This 'cancer walk' is not easy and will not be easy, but He is right here to refresh and restore us along the way. Several times Julia would cry as we were walking today and need to be held. As I stood there along the path with her little arms wrapped around my neck, I couldn't help but think. All she needs at this moment is to be held and it quiets the crying. God is there to do the very same for me, every step of the way, as often as needed, I only need to cry out to Him and ask.

Friday Favorites

OUR TOP TEN RAINY DAY TOYS
Since we've had a lot of it this week I thought this would be a good post for today. At the top of my kids' lists would probably be there umbrellas and boots- both worth every penny! I also can't resist a 3 yr old in boots. I think it's like a trademark. They almost all do it and it's the only time in your life that boots and dressup clothes is acceptable daily attire :)

1. Fisher-Price dollhouse We all love the dollhouse. This is actually her second after the FP My First Dollhouse and now we use both. One thing dollhouses often skimp on is the food. We came up with this idea last year. We went to our local craft store in the dollhouse section and bought a pack of plates and 2 bags of miniature food. Then when we brought it home we used mod-podge/decoupage glue to adhere it to the plates and to coat the top. Let it dry and... tadahh!! dinner is served! We have 8 plates now and Julia loves that everyone can eat.
2. Learning Resources cash register

The kids love to play store. They use all the play food, expired coupons, play shopping baskets, wallets, play money, and of course the cash register. I love this one because it actually works as a calculator and has a variety of games and activities pre-programmed at different levels.

3. Wii (MLB Power Pros, Wii Sports, and Active Life:Outdoor Adventure)

Yes, we love the Wii at our house. Carter is the biggest into the sport games, but we recently got the Outdoor Adventure with playmat and we all can play- jump rope, climbing, mine cart racing, sliding, etc. We are laughing in no time :)

4. bathtub paints
I've posted about these before. They can turn around almost any mood in our house and our so easy to make. Here's the recipe:

Stir together 1/2 c. dish soap (use a pure and gentle formula) and 4T cornstarch. Divide into little cups and add one drop of food coloring to each and stir. I used empty applesauce containers (I keep a stack in my cabinet for art projects.) or a muffin pan works, too.

5. balloons and homemade paddles These are so easy and great fun. All you need is paper plates, paint stirrers (or other large craft sticks), packing tape, and a balloon. These are great for kids parties, classrooms, or rainy days. It is great for gross motor and helps develop coordination in younger kids- think 'slow motion tennis'. And the best part- it's fun for one, two, or a group.

6. Elefun

7. Playskool Rose Petal Cottage Julia got this last Christmas and everyone has enjoyed it. I love the versatility. The two halves can be used open or together. The furniture is durable and just their size. It can be collapsed and stored under the bed if needed.

8. Geotrax

Carter got into these as a 2 yr old when he fell in love with trains. We have actually preferred it to the wooden variety because the trains move by remote control. The pieces snap together and stay. We like to get it out on cold or rainy days and set up a track through the living room.

9. IKEA kid's tent


10. Baseball Guys (KaseyKids)
Carter uses these to pretend with, place dice baseball, do instant replays, or just to play. For added fun you can add baseball card, too.