Heavy Heart

My heart is heavy today as I think about and pray for a family whose little boy is dying soon. I don't follow any new cancer kids because it's too hard. But the mom's that were on the rhabdo kids forum the same time I was I'm attached to. I love their kids and have a taste of what the pediatric cancer world is like.

So today while I was SO EXHAUSTED from taking two kiddos to the grocery store - grabbing the apple before the whole pile tumbled, putting back dressing and Koolaid and Mac n Cheese boxes that my toddler loaded in excess, trying to walk ever so slowly as the kids keep darting in front of my shopping cart, asking again and again for Toddler Jay to stop opening EVERY single freezer door trying to select ice cream and popsicles, etc.... while I swear that I NEVER want to do that again for WEEKS... I'm reminded to be grateful for their energy, their vibrance, their presence, and for being their mother.

The words that I could never voice were, "I'm afraid my son is going to die" but the thoughts haunted me often despite my faith and trust and doing everything in my power. My heart is heavy for the mothers that are afraid and their faith, trust, optimism, and endeavors to do all they can just aren't enough because sometime soon they are going to lose their child.

Today I cry tears for Shelli hoping that their special plans this week can last in their memories forever.

Today I seek hugs, laughter, and smiles from my children. Because I owe it to them and I owe it to my maternal heart to cherish them.

ETA: Ricky received his angel wings late Sunday night in the arms of his parents. In his four short years, he has fought hard, found daily joy, and touched many.

It's Still Weird

It's still weird to me that my husband I and exchange emails or dialogue like this:

I made Jacob’s scan appt today. I can plan on taking him.

June 16, 9am CT

June 16, 1:20 pm Dr. Mathias

We have been so far removed from the worst of it, that some days it doesn't seem real. Then the quarterly check up sneaks up.

I have been thinking lots about our treasured memories from the Wish Trip last April. I'm also painfully aware that I never finished writing all the details. I'm still working on the poster print keepsakes that will eventually grace my wall.

Touched by Cancer

I'm especially thinking about cancer today because Jacob is at the hospital right now getting a bone scan. This particular scan wasn't ordered with his other 6 month scans earlier this month. It makes me anxious to find out what they are able to see and what they might be worried about.

*****

I review all my kids' homework in the their Friday Folders. Jacob got 100% on his worksheet on periods, question marks, and exclamation points. At the bottom of the page he had to write his own sentences.

9. A sentence that tells something: I went on an airplane.

10. A sentence that asks a question: What is cancer?

11. A sentence that shows strong feeling: I like playing with LEGOS!

12. A sentence using an abbreviation or initial: I go to the Dr.

10 on Wednesday

1- I'll have you know that I WAS in bed by 11 p.m. Sunday evening. There was no sleeping for at least an hour, but I kept the lamp off so there was no reading either. As I lied there I noticed the cramps in my calves and thighs. I wondered about the blogs that I hadn't read yet. I thought about doing more stretches for my tight body. But my stroke of genius was this:

2- I decided to HEART ATTACK Jessica's door. She's always competing with Jayson for Dad's attention. She isn't going to quit the role of Daddy's Little Girl especially since Jayson is starting to favor Dad too. She often feels left out with the older brothers and says, "they don't like me." Apparently she saw me corner Jacob to give him a hug (because you have to steal them from him, he doesn't usually offer hand outs). She went and pouted on the stairs. I dare say there were misty eyes. I asked her what was wrong and she said, "You don't love me." Point is, Jessica needs a boost in her self esteem and reassurance that we adore her. I also put a little heart with a love note in he lunch box. When she got home from school, she immediately saw this and grinned from ear to ear.

3- I confess I did NOT make it in bed by 11 p.m. on Monday. I blame the washing machine, it's not pulling it's weight around here. It is only 9 years old and it's paired with an ancient dryer that keeps on working perfectly. The washing machine had a faulty switch - the one that tells the machine that the lid is shut and it's okay to spin. When the switch doesn't work, the washing machine just stays full of water and stops halfway through the cycle. It's been replaced once. It's broken again and I've been managing the problem with duct tape for several months now. I currently have the button taped down so the machine ALWAYS thinks the lid is closed. So far so good with not having my loads splash and spin all over the room. BUT, every 6-7 loads I have to re-tape it. When I went to switch loads, I had to re-tape and then wait for the spin cycle before I could switch them to the dryer. Laundry delay.

4- I DID get to bed on Tuesday before 11 p.m. which is why this is a 10 on Wednesday list.

5- I've been doing my exercises which have made me all tired and achy. Being tired and achy make me want comfort foods, which has been making the exercise null and void.

6- I DO like showering at the gym. They are pretty clean. Good water pressure. Lots of warm water. No toddler outside the door putting handsoap in his hair - PRICELESS.

7- Anna is home from college. I didn't get 5 minutes into our conversation before I re-hired her to come back and help me with house keeping. It's heavenly!!!!

8- I forgot that we brought Jacob's camera to Wild Rivers Water Park, so you get to see these fabulous images of me with my kids - too bad I'm in a swim suit. Make a Wish has an annual summer event where they invite all the wish families of that year. They provided tickets and a BBQ lunch. Very Cool!

9- A couple of the salsa jars did not seal, so we got to sample some early. Pretty tasty. Jon read that salsa is best after it sits on the shelf for several weeks. All the flavors with mesh together. Guess we'll have to find out.

10- Betcha you've been missing this little guy in action. So here are some snaps of the cutest little red at our house. Here's just snackin' on a pear and sippin' his milk (which he will ONLY drink in a bottle).

Each Moment Counts

It's been exactly one year, 365 days, 12 months, 52 weeks, 8760 hours, or 525,600 minutes, 31,536,000 seconds from the day we found Jacob's tumor.  We didn't know for certain that it was cancer until after the tumor was removed and a biopsy was performed.  Those several days were like their own lifetime.  So many thoughts and emotions in such a short span of time.  

You can read those early accounts HERE or about his surgery HERE  or Jacob's interview about his surgery HERE  or my "the day that changed everything post" HERE.

And here we are living a pretty "normal" kind of life.  Trying to step out of the cancer sphere and press forward.  I will admit that I've had some bouts of anxiety while scheduling well child check ups for kindergarten and vaccinations.  But I am also grateful that my doctor was able to recognize a problem and coordinate the help we would need.

Life is a fragile thing.  I think most of us get in the habit of thinking we are invincible.  We expect that we will have a chance to grow old, become grandparents, and see our children live out the adventures of their life.  I guess it's quite a hopeful and optimistic way to live.  I believe in hope and optimism.  Why is it that sometimes it takes a crisis to make us savor the joys that are happening in our lives today?  I realize that there are no guarantees.  That today really does make a difference.  

I wish to express gratitude from deep within my heart where all the maternal tenderness dwells.  Thank you for letting me share each of those days -each moment- with my son.  Uncertainty perpetuates perspective and cherishing the moments we have now.  I know Jacob more deeply than I did before.  I know his soul - his strength, his heartache, his goodness, his weakness.  And I love all of him more than I ever thought possible.

Today he is a thriving, active, super handsome, nine-year old boy.  Sometimes I look at the pics of him during his treatment.  I was certainly blessed with strength beyond my own.  It was so uneasy walking the path of uncertainty.  How bad is this going to get?  How much longer are we going to have to do this?  How could we live without him?

I look at pics of baby Jayson.  He was only 6 months old when all the drama started.  A nursing baby who ate every 4 hours.  I had rarely been away from him.  James lost one of his best friends for a while.  He was angry too.  Jessica noticed the hours that we were away and preoccupied.  Jon & I stood on a united front, but we were stationed in different locations (hospital/clinic, work, home).  We each had to work through our emotions at our own pace in our own way.  Some days we broke down at the same time.  Other days we'd take turns feeling completely broken, scared, overwhelmed, or just plain sad.

Our love grew this past year.  We had so much time to think about our love for our family.  We thought about God's love.  We thought about all the extended family and friends who were cheering us on.  But didn't we have the same amount of time as always - 24 hours a day, 7 days a week?  It wasn't in us to think about other stuff.  Our family, our memories, our healing, our hope, & our endurance was what we were compelled to ponder.  Why is it so easy for those important things to slip from our perspective?

What great joy we've had emerging from this great trial.  To see the curls on Jacob's head.  To see all of us around the dinner table.  To gather together for an adventure.  To remember the moments we created on the Wish Trip and visiting our family in Utah.  Each moment counts.

And I do have a confession.  I didn't know how long it would be before Jacob would have hair again.  It was so hard to part with it.  When we decided to buzz it, I collected it.  I wanted to find a fancy bottle with a cork like "Message in a Bottle" to put it in and save until his new hair grew back.  I never found the bottle, so I have a rubbermaid canister of hair up on top of my fridge.  I still haven't found motivation to let it go.

Bon Voyage Party

Jacob was referred to Make-a-Wish by his oncologist. We first met with Darla & Nathan (our Wish Volunteers) back in October. They interviewed him to find out all his favorite things and to hear some of his wish ideas. My son is FULL of ideas, but those of you who know him also know that he isn't a big talker. He answered most of their questions, but pulled a blank when they asked his ultimate wish.

We seemed embarrassed to ask for anything and he didn't really understand all the friends that the Make-a-Wish Foundation could pull together. He later told us that "it's a big decision." He had always mentioned to us that he would like to go to Disney World. He didn't really care about meeting a famous person. He's only ever been in California, Utah, & the interstate between the two. He doesn't even comprehend how many places there are to visit. He loves to swim, so anywhere with a pool would thrill him. He always wondered what it would be like to go in an airplane.

After Jacob had time to complete his chemo and think about his wish some more, sweet Darla & Nathan came to our home and re-interviewed him. This time he was prepared to really voice his desire to travel to Disney World. They set to work to see what could be arranged. They called Jon & I to confirm travel dates and then set up a Bon Voyage Party to present Jacob with his WISH.

It would have been nice to have all our family and all the friends that have supported us during Jacob's treatment over to our home to celebrate. As it was we had a few of our local friends who have spent Saturdays playing with Jacob during treatment or serving our family in dozens of ways. Our house was full of love.






After enjoying pizza & fruit & soda (all provided by Make a Wish), we gathered for the big announcement.

If you've ever watched Extreme Makeover Home Edition, you always know they are going to do something awesome. And they always go the extra mile. The family is always crying and they haven't even seen everything yet or had a chance to realize how truly great it is.

I felt a little something like that. They presented Jacob with a backpack full of travel toys for the plane. They arranged a shuttle to pick us up and take us to the airport. They arranged the flights to Orlando. They connected us with Give Kids the World who would provide our accommodations, meals, and present us with tickets to the theme parks.

*3 Day Hopper at Disney World (they actually have 4 parks within Disney World)
*2 Day Ticket to Universal Studios (they have 2 parks plus the CityWalk)
*1 Day Ticket to Sea World

If you do the math, that's SIX DAYS worth of tickets. We were only going to be there for 5 days plus 2 travels days. More to do than we could even pack in.

They provided Jake with a t-shirt & button that would work like an all-day FASTPASS. This was probably one of the kindest gifts for a family of 6 who were traveling with a toddler. No waiting in long lines.

All of this was more than enough. All of this was exciting enough. But they proceeded to present us with a check to cover any meals we chose to eat out, additional fees or tips, & souvenirs. This is where I turned into those families on tv crying like a baby. It was just too nice. It was just more than I would ever ask for or hope to receive.

But they weren't done yet. They had one last Big surprise. They arranged for a limousine to pick us up from the airport and drive us home. I was SO SURPRISED at how excited this made the kids. They couldn't stop talking about getting to ride in a limo.

So as I share the pictures and details of the trip over the next several days, please know that I wish to sing the praises of Make a Wish Foundation & Give Kids the World. They truly wrote the recipe for a trip of a lifetime.

Wish Trip Sneak Peek

Words can't express my gratitude for the gift provided by Make a Wish Foundation together with Give Kids the World. I took HUNDREDS of photos. Here's just a peek into our favorite family trip.

Ten On Tuesday

1- STILL fighting lingering cold and I'm cranky about it :)

2- I went to The Little Mermaid Ballet with my daughter and all her preschool classmates. I enjoyed it, but I still like musicals & lyrics.

3- I still think that I'm going to take Jayson's picture in his football jersey from Halloween - even though I don't have a cute leather football for him to hold.

4- I also still think that I'm going to take Jayson's 1st birthday picture of him and his cupcake.

5- Sometimes I get ideas in my head that nag me again and again, but I still don't get to them.

6- Jayson's hair might be going blond. Now I CAN'T cut his curls because then he may not have any red left.

7- Did I mention that Jacob went back to school last week. He was excited - spring in his step. I was slowing him down because I insisted on bringing the camera.



8- I admit that I had to choke back tears after I left his classroom. It was worse than the first day of kindergarten. I'm going to miss him.

9- I realized that I can be a PEACEMAKER in my home instead of a REFEREE. The paradigm shift has not made me perfect, but I'm trying much harder.

10-Oh wait, it's St. Patrick's Day. I have recent pics of each of my kids in GREEN. Enjoy!


I wanted a pic of Jayson walking. He was ticked that Jacob kept bringing him across the lawn. He wasn't in the best mood when he came running back to me.

Oh- not all of those boys are mine. Guess I already shared the trio of mine together.

Meet NED, I mean Jacob

I haven't even published the best news ever. Jacob completed all of his end of treatment scans mid-February. This included: CT scan to chest, pelvis, & abdomen. Localized ultrasound at original tumor site. Full body bone scan. He also did his routine labs (bunch of blood tests). His doctor called to report that all the tests came back normal. His counts are great. He'll be returning to school soon.

N.E.D. stands for No Evidence of Disease. Among rhabdo parents (and perhaps other cancer patients) it's like getting an A+ on a report card.

Several weeks ago I was joking with Jacob that we want to call him Ned after all his scans. I explained that being NED is the best news a kid with cancer can get. It means that the doctors have looked all over the scans and can't find any cancer. We hope that they NEVER will be able to find it in him again.

Jacob thought it over for a moment. Then he said, "I just want to be Jacob."

Bless his kissable cheeks!!! Another lesson taught. Nobody wants to be defined by their disease. We just want to be ourselves.

In Jacob's medical file I'd love it if they stamped "N.E.D." in big bold red ink. But, at our house he's just our Jacob.

New Hair for the New Year

Fact is that my boy has as much hair as any other boy with a buzz cut. His eyebrows are still filling in. It's still quite fine and extremely soft; softer than infant hair. Seeing his hairline so clearly reminds me when he was a baby. All the hair grows forward until it kicks up with the "V"-shaped cowlicks.

In other news, it appears that Jon is going to keep on shaving his head. Should he choose to regrow his hair, he's not likely to get as thick a mane as Jacob.

Someone Needs Your Star

The theme for our Relief Society Christmas Dinner was Someone Needs Your Star. The ambiance was done up classic Sara style in winter white. White twinkling trees, white flocked branches in tall center pieces on white linens. Silver stars dangled on various limbs and adorned the take home gift. The dessert table hosted gingersnaps, snickerdoodles, sugar cookies, and hot chocolate fixings in tall glass canisters - looking like something straight from Mrs. Claus's kitchen.

I was asked to sing "Someone Needs Your Star." You can purchase Jenny Phillip's original version HERE. It was fun to learn and a bit intimidating to sing. I'm so out of practice and I feel so stiff in front of a crowd. I only forgot a few lyrics making one of the phrases not rhyme.

A little service activity on the side was collecting Santa hats and assembling reindeer treat bags. This was a gesture that we thought would lift the spirits of all the cancer kids that go to Jacob's clinic every week. They have a closet in the procedure room. After the kids get their bloodwork or chemo, they can choose a prize from the closet. The cupboard had been bare for a few weeks so it was a joy to fill it up with Santa hats for all their bald heads and treat bags.





Going to the clinic as Santa was much more fun than going to the clinic as simply a patient. Jacob selected his hat first and even tore open a goodie bag to eat in the waiting room BEFORE he was accessed. We saw his friend from school and told him to be sure to check out the prize cupboard. I also saw a couple other cancer moms that I have come to know in our long days at the clinic or hospital.

We were at the clinic ALL DAY on that visit. When Jacob was FINALLY brought back for his chemo, the nurses commented about how all the kids have loved the things he brought. I want to thank our many friends who donated hats, assembled the craft bags, and arranged for this to happen. Jacob & I had the awesome job of making the delivery and it was quite fun!!!

If I Were a Gift

My Jacob has a friend named Jacob who had to complete a writing assignment at school called, "If I were a gift." His mom sent me what he wrote. I was very touched by his kindness. It reminded me that we should each be thinking what we could be or do for somebody else.

If I Were a Gift by Jacob
If I Were a Gift, I would be hair for my friend Jacob.
I would be hair for him because he is on chemotherapy.
He has lost all of his hair.
He would want hair to warm his head in the winter.

Prayers

I guess if we pray with all our hearts, then listening to the prayers will show us what is at the heart of the matter.

Jacob said this in our morning prayer (just a note - yesterday he got his chemo that makes him quite nauseous):

"Please help me to get better. Please help me not to throw up too much. Please help Jayson not to scream when his teeth are coming in."

Later at lunch, Jessica offered this blessing:

"Please help me to have a good day at school. Please help Jayson to stop screaming."

What's on the Menu

I hope you are enjoying your Thanksgiving Celebrations with all the holiday classics. We are going rather non-traditional this year. We were invited to a feast with the Jonas family again this year which is SOOO appreciated. But Jacob was scheduled to get chemo (Vincristine AND Dactinomycin) that makes him feel quite nauseous. We decided to rally around him in the comforts of our home. Turns out that his counts weren't high enough to get treatment this week, so he'll get that dose next Wednesday. So thankfully he feels plenty well - there's no barfing. But now we keep him in our family bubble for a couple of days so his counts can come back up.

We are planning a cozy, comfort food meal of homemade chili & breadsticks (or maybe cornbread - I haven't completely decided). I was going to make an instant cheesecake which I love in a time crunch. Perhaps I'll let the kids make the chocolate pops with the molds we just bought (since they don't understand the divinity of cheesecake).

On Sunday we will roast our turkey with a side of my favorite rosemary roasted veggies. And just for kicks I'll make a box of Stove Top. Jon says he would like to try a new homemade roll recipe, so I won't argue. We don't need fancy for Thanksgiving.

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

On the sidebar is a list that I've tried to keep this month of three things I'm thankful for each day. I have a mile long list of friends who deserve a personal shout out or a thank you card. Still the notes are unsent, not because of the lack of gratitude. My heart is deep and overflowing with thanks for the caring gestures for my family. There have been HOURS of babysitting and cleaning. We've enjoyed delicious homemade treats that were brought by. Jacob received many thoughtful gifts to comfort him during his hospital stays or clinic visits. The reassuring comments on our blog or personal e-mails have helped Jon and I through the rockiest times. The prayers offered in our behalf have lifted and healed our spirits. I am EXTREMELY aware of the kindness that has been poured out. I don't know what to say in a card. "Thank You" doesn't seem enough.

Just Another Crazy Day

5:00 a.m. - Nursing baby. James runs in to announce that Jacob is vomiting. Jon goes.
7:00 a.m. - Kids' breakfast. Family prayers. Jon off to catch train for work meeting. The flat tire from yesterday is holding. I put on shoes with pjs and drive James to school.

Morning Stuff - dishes, diapers, folding blankets, e-mail, view insurance claims (really? I get to pay $130 for my foot x-rays), re-edit fairy photo, nurse baby & let him sleep curled up on my chest, get dressed, curl hair, pack lunch box, argue with Jessica about the need to brush hair and teeth, pick up yogurt wrappers, wipe floor under high chair, dress baby, fall off the "no simple sugars" wagon & eat boxed cold cereal & granola bars with chocolate - OOPS! Clean up salad and dressing that Jessica got out.

Noon - preschool, return library books, listen to screaming baby in car, video store
1:00 p.m. - Watch part of "Journey to the Center of the Earth," nurse baby, talk on phone with sister, slice bell peppers
2:30 p.m. - Call from Jon - train delayed won't be home in time for me to leave kids home while I run carpool.
2:40 p.m. - School is out. Jacob sick and doesn't want to get in car. Call friends from school with cell phones. Leave messages on cell phones. Reach neighbor who agrees to go get James just as other friend returns phone call. Jacob barfing in the sink. Baby nursing so he isn't crying into the phone (and is he having a growth spurt??? why so mommy insistent?)
3:00 p.m. James home. Jon home. Jayson & I go to run preschool carpool.
3:30 p.m. Kids watching "Journey to the Center of the Earth" - I still haven't seen the whole thing. Jon leaves to go get formerly flat tire and currently less than perfect tire fixed because we bought the warranty.
4:00 p.m. Scrambled eggs for everyone except Jessica.

Afternoon Stuff - trip over blankets, pick up yogurt wrappers, return milk to fridge, empty dishwasher, load dishes, gather laundry, other stuff I can't remember anymore. Call pediatrician to schedule flu shots, but have to leave message on machine. Call to cancel physical therapy because it ain't gonna happen tonight.

5:30 p.m. Jessica screaming in time out. Jayson screaming anytime I put him down. Soda all over the table and kitchen tile. More plates, bowls, cups, napkins, and yogurt wrappers on the table. Trying to start spaghetti noodles, chicken strips, etc. Jon stuck at tire place because they made an error.

6:00 p.m. Kids leave to shower. Jayson agrees to eat quietly. Dinner is warming and ready. Eat. Start clean up. Jon returns home & bathes baby. Blog. Sweet smelling baby wants momma (reaches arms out to me & then dives into my neck when he gets me). Jacob has fallen asleep on couch - too tired to eat.

7:30 p.m. Jayson nursing. Jessica climbing on lap. Jon trying to salvage the rest of the kitchen.

8:05 p.m. Time for "Survivor" & a shoulder rub - thanks Sweetie. James comes back downstairs to glean a few more minutes before bedtime - offers to run my feet. Who can say no to that?

9:45 p.m. I still need to do my calf stretches & rub my feet over a tennis ball. I'll probably need to heat up my neck wrap to put on shoulders to loosen up some more. The laundry will sit until tomorrow.

Happy Halloween

The day started off at Team Physical Therapy for me. I have Planter Fasciitis. It's not very realistic to have a mother of four who can not get up on her feet and go full throttle all day. I notice it every time I get out of bed and then throughout the day. When I've tried to start back on my walking routine, inevitably I live to regret it because my feet ache so bad. So the unremoved pregnancy pounds are contributing to the planter fascia and the pain from the planter fascia is keeping me from getting out and walking. Good thing that Jon got me started on biking with him.

Later in the day (in the midst of pumpkin carving) I needed to send Jon to the urgent care to get antibiotics for James. He has an ear infection. I got the ballerina fairy all made up while they were away and then he was able to take our clan trick or treating. I stayed home to greet the little princesses and gremlins that stopped by our door. I had to start giving only ONE piece of candy. Usually we all go out trick or treating together and miss half the kids, so we end up with lots of candy. This year we ran out. Jessica started volunteering to give her treats. She really liked passing out candy.

We allotted a bit more time for pumpkin carving this year. James was utterly disgusted by the pumpkin pulp. Jessica was so excited that she colored her pumpkin with markers and decorated it with stickers before we got around to carving it. We used a cat pattern where you just poke holes to make a design. It turned out pretty cute. Jacob was very ambitious to carve a spider design, but then opted for his own hand drawing. In typical fashion he spent the most time carving - even though he is the one who has lost fine motor skills in his hands (from the chemo).

Stepping into Another World

We had a delightful time. Weather was perfect. Manageable meltdowns. Super fun memories. WAY WAY WAY funner than chemo this week.




The kids & Jon sat down in row three of the Soak Zone for the Shamu Show. Jayson & I took to higher ground since he was nursing and sleeping. The kids were kind of bummed that they didn't get drenched. They needed to be one section over for the tail fin splash.

All during the Artic Wild simulated helicopter ride, Jessica kept reassuring me that we weren't really crashing or in an avalanche. "It's just TV," she'd say. "It's just pretend Mom."

I spent longer watching the walruses than the kids wanted. They were just smashed up to the glass. Interesting creatures.

I was trying to take silhouette photos of Jessica in front of the fish tank, when all of a sudden the polar bear jumped in to snatch a bite to eat. We were standing just 10 feet away from a bear catching fish. FASCINATING!!! He looked so cool floating in the water with his fur swishing back and forth.

I TOTALLY forgot that the huge water hill on the Atlantis ride is just a warm up. After you go up the elevator you go for a steep spin on the coaster tracks. Both Jessica & Jacob rode the ride with Jon. I don't think either of them liked it.

The Shipwreck Rapids turned out to be a favorite. I went with my little brave ones first (Jessica & Jacob). Later we returned and James went with dad & the others. We all loved that one!!!

Going Through a Phase

A couple weeks ago I taught Jacob one of my favorite card games: Phase 10. He caught on quickly and won me hands down. You play this game by getting sets (same #) or runs (cards in numerical order). Each phase you are trying to play a different assortment of sets & runs. The winner is the one who completes all 10 phases first, but it's possible that both of you will finish all ten phases by the last round. At that point you compare points. Our closest match was when we both finished all ten phases and it came down to the point tally. Jacob won because he had stuck me with ONE card (5 points). Now Jacob wants to play this game every day. I enjoy this time with him - actually I didn't enjoy the HUGE blowout yesterday when he whooped me by two phases and I had 100s of points. I really kept wondering if he had stacked the deck, but I was the dealer. He knows how to gloat too. But he had a good time.

Father & Son

I guess all that hair shaving has paid off. Jacob feels a deep bond for his dad. He sat with him during his first ultrasound and took him for his first CT. Jon has also been involved with taking him to clinic appointments. Jacob is often found cradled in his dad's arms.

Jacob refused to go to his CT appointment with me today. He wanted to be with his Dad. So I'll busy myself with errands of the day and needs of my younger children. In my heart, I'll be sitting in the CT scan room.

Where a Kid Can Be a Kid

Of course the only place (aside from Disneyland where we currently DON'T have passes) that Jacob wanted to go on his week off of chemo was Chuck E. Cheese. I would have had a heart attack at the suggestion several weeks ago. We've been living in a delicate bubble - for good reason. We haven't known what to expect with Jake's health and I certainly didn't want to be the one putting him in harms way. We've had some friends over off and on, but basically we've been in isolation. It's been tough on all of us. It's safe to say that I think we've each got a bit of depression.

So- knowing that his counts should hold steady this week, we threw together a trip right after school before the dinner crowd. Laughter and fun have a fabulous healing effect. I keep reminding myself that it won't be long before $30 can't buy such a paradise for my kids. We were all about the tokens & the tickets & THE PRIZE CENTER. Jacob won a balloon. James got enough tickets from the Jackpot to buy cotton candy. Mom won enough tickets on Alley Roller (isn't that thing supposed to be called SkeeBall?) to buy pink make-up for Jessica. Jayson hung out in his stroller just kicking his food tray. Seeing all four of my kids play, smile, laugh, live, & thrive. . . . PRICELESS!