COUNTS

I went to make a deposit today. On the back of my last deposit slip were written blood counts from 12/4/08

ANC: 1377

W: 2.46

Hem: 11.6

Plat: 283

I don't really remember how to interpret them anymore - although I do know that these are good numbers.

Just last week I got a phone call from the Pediatric Oncology Research Team to ask about Jacob. They update his file every 6 months and since we only go see the oncologist every year they call us to note his progress. I was happy to report that he is doing so well.

What seems to count to me is that I have a growing, happy son. His social studies grade dropped a bit, but he'll bring it back up. He is a smart young man. He gets good grades and recently finished the third volume of Harry Potter. This is noteworthy because it's the longest book that Jacob has ever finished reading. He plays the trumpet in band at school and plays on the same basketball team as James in the city basketball league. Jacob sports a size 13 shoe. He has a giant heart that sometimes only his mom knows about because he prefers to tease, taunt, and BUG. But I KNOW it's in there. Every so often he drops his charade and offers to help me in the kitchen or pals around with his younger sibs.

I love you Jacob!!! I hope that counts for something :)

Certified Letter

I had to sign two forms to receive a certified letter from Oncology Clinical Research from the hospital Jacob was treated. We enrolled him in their study which allows them to use his results to access their treatment protocol and modify it for future patients. As unsettling as it is treating cancer is NOT an exact science and it does NOT behave predictably or fairly. Anyway, it rattled me a minute. Partly because I thought I was going to be summoned by the court since I missed my recent jury assignment even though I requested an excuse (which they ignored).

"To: Patients/Parents of Patiens on ARST0331"

The letter didn't actually apply to Jacob's group since he was stage 1 group 1 and it was informing us that the stage 3 groups 1&2 needed to be on higher doses of cyclophosphamide. Their attempts to lower this terrible drug filled with side effects were not maintaining the same cure rates as children who had survived more doses of the Cytoxan.

Jacob only had 4 doses of Cytoxan. It is nasty, nasty stuff.

Beautiful Heartbreak

Dear Heavenly Father-
Thank you for knowing how heartbroken and helpless I felt. Thank you for knowing what I meant when I had no words left to speak. Thank you for showing me how much you love my Jacob and helping me care for him even when he couldn't say it back. Thank you for being there even when the journey was so very, very lonely.

Thank you for opening my eyes to the many good people placed in our path who were reaching out to us. Thank you for healing me; for taking away the fear, the despair, the panic, and uncertainty. Thank you for healing my broken heart. I know that "time" does not heal a broken heart, but He who is Endless.

Love,
Your Daughter,
jennifer

Unsubscribe

Today I unsubscribed from the rhabdo-kids list from American Cancer Online Resources. I would occasionally skim the digest version of the daily posts, but now I'm done with that.

The End.

Out of Solitude

Read this quote today on the rhabdo-kid list. I couldn't agree more. Thanks to those silent friends whose presence and thoughtfulness have been so deeply felt.

"When we honestly ask ourselves which persons in our lives mean the most to
us, we often find that it is those who, instead of giving advice, solutions,
or cures, have chosen rather to share our pain and touch our wounds with a
warm and tender hand. The friend who can be silent with us in a moment of
despair or confusion, who can stay with us in an hour of grief and
bereavement, who can tolerate not knowing, not curing, not healing and face
with us the reality of our powerlessness, that is a friend who cares." The
author is Henri Nouwen and it is from a piece titled "Out of Solitude."

FYI-

I'm trying to update and organize this blog in preparation for printing it into a memory album. We rarely use this blog anymore. Our Jacob is currently 10 months off treatment. His scans show no evidence of disease. Starting next year he will check in with his oncologist only once every 4 months.

Make a Wish Story

I was requested to write Jacob's Make a Wish Story including: how he came up with his wish? Does he still talk about it? Is there anything about Jacob's background or family life that contributed to his selection of his wish? Does Jacob have siblings? Does Jacob have any nicknames? etc.

This is what I submitted:

Jacob is our second son. He has lived in Southern California his

whole life. He has an older brother, a younger sister, and a baby

brother. We've always called him Jake, but as he's gotten older he

insists on being called Jacob. He usually spells out his full name on

his homework assignments and on the label tags of his personal items.

We adore our little Harry Potter fan who has always carried a wand or

light saber in his carefully crafted toolbelt. Jacob loves to create

things with Legos - he often assembles the models while ignoring the

instructions. He is sweet and sneaky. He may not talk to you because

he doesn't bother much with chit chat, but when he has something to

say it's usually worth listening to. He has evolved into a huge video

game fan and can list all the characteristics of hundreds of Pokemon.

I guess most parents have a huge list of why their kid is the best.

And in our little world, our Jacob is a one of a kind charmer, tease,

& friend. Our family wouldn't be what it is without him.

Just after Jacob's 8th birthday he was diagnosed with

rhabdomyosarcoma. Surgery, worry, treatment protocol, uncertainty,

hospitalization, and other testing proceeded immediately. School was

ready to begin. We set up home/hospital studies and transformed our

home into a germ-free zone. All of this took a great toll on him

physically, but what concerned us even more was the emotional burden

that the disease brought. So many worries, fears, and limitations on

one little boy all at once. We wanted him to have optimism to hold on

to. Something to look forward to. So we decided to meet with Make a

Wish during his treatment. When Jacob first heard his social worker

say that he could make a wish, he asked, "can I wish that I didn't

have cancer?"

Coming up with a wish was difficult for him. We met with kind

volunteers who asked Jacob many questions about his interests. When

she asked, "Jacob, what is your ultimate wish?" his answer was a blank

stare. He said nothing. The volunteer shared ideas of wishes that

other children his age had enjoyed. Essentially he just picked one

because they all sounded nice. Days after our meeting he started

making comments about different wishes - things that he had been

thinking about. We asked him, "what is YOUR ultimate wish?" He took

the process very seriously and said things like, "it's a really big

decision." Our volunteers were very understanding when we got back to

them to explain that Jacob wanted a chance to think it through some

more. Perhaps just thinking about it and planning his wish out in his

mind was therapeutic for him.

We talked with Jacob about the things he loves - swimming, staying at

hotels, being with his extended family in Utah, visiting theme parks,

etc. We talked about places he has never gone or people he has never

met but might want to. We talked about experiences that he hasn't had

and the possibility of trying them. Then Jacob's ultimate wish

evolved. He was hesitant to ask for it.

Jacob wished that he could visit DisneyWorld.

Why this wish? Disneyland in Anaheim holds very special memories for

our family. We would go there every Christmas season and enjoy the

lights, parade, & fireworks. Being annual passport holders was a gift

we tried to give our family over the years. It was a place we could

go to play and be together that was always special and magical. The

year Jacob was in treatment we had to avoid the crowds and use the

money for medical bills. We missed it. Jacob looked forward to

experiencing Disney Magic again. The idea of going to DisneyWorld to

experience the additional attractions in their multiple parks was

exciting. It was time to be away from the clinic, get out of our

house, and be together - laughing, playing, sharing.

We traveled on this trip of a lifetime in April 2009. Make a Wish

thought of all the details and found ways to make this time as

stress-free as possible. They arranged everything. They connected us

with Give Kids the World who provided accommodations for our family

and ticket options to various theme parks. Among several gifts, Jacob

received a large stuffed Mickey Mouse. On difficult days I find him

with his arms wrapped around this toy - holding on to the good

memories he had there.

In the Village where we stayed, Boston Market provided the food at

Annie's Kitchen. Jacob became a big fan of their chicken sandwiches.

Since we've been back home, we've enjoyed going to our local Boston

Market to order a taste of our Wish Trip.

After getting soaked on Splash Mountain, Jacob's brother said to him,

"Are you glad that you got cancer, so that we could come here?" Jacob

quickly replied, "no." No kid wants to get cancer or any other

illness. As parents we feel so grateful for such generous

organizations and businesses who gave of their time, talents, &

resources to ease the burden of our very difficult situation. Giving

us an experience to remember forever. Giving us every opportunity to

live, to laugh, to love, to cherish, and to remember.

We had a lot of adventures, but when he tallied up all the fun Jacob

decided that the Rock 'n' Roller Coaster was his favorite. It goes

from 0-60 mph in 2.8 seconds. Jacob used to be more timid about fast

rides and coasters. But he felt especially brave and gave all the

rides a shot because this was his chance to try them out. He also

noted, "I had cancer, this ride can't be scarier than that."

Each day was filled with favorite moments. We took hundreds of

pictures. Jacob enjoyed using his disposable camera to capture some

of his favorites. We are creating a huge poster to hang in our home

with all the trip tidbits.

A bonus surprise for Jacob was that Make a Wish arranged a limo to

pick us up from the airport and drive us home. He was so excited to

pour sodas into tall glasses while driving. It was the perfect

finishing touch.

The whole wish turned out bigger and better than any one of us could

dream up. It was the perfect gift. Thoughtful and kind.

When I review Jacob's papers from school, I find little comments such

as: If you could go anywhere, where would you go? and he writes:

DisneyWorld.

I'm Thankful for Many Reasons - November 2009

I'm thankful for many reasons. First, I am thankful to live in a free country. Second, I have a wonderful family to live with. Third, I am thankful to be alive. Finally, I have many veterans to fight for our freedom.

by Jacob Stock

September 11, 2009

{Jacob shared this letter with me that he had written weeks earlier. We did put the original in the mail}.

Being at School

Jacob was probably one of the only students that wasn't counting down the days until summer vacation. He has enjoyed being back in school and loved seeing his friends each day. He has settled into summer life just fine.

His last few days were filled with Father's Day Picnic, 3rd Grade BBQ, Academic Rally where he one a PAW award for his positive attitude in class & honor roll, & game day. He brought in doughnuts one day to celebrate his summer birthday. I did have to take him out of school one day to get his port flushed. He would have preferred just staying in school. It was nice to spend some one on one time with him playing Rook and going to Subway for lunch.

I'm so grateful for his health, vibrance, and energy. Today out of nowhere he came up to me to give me a hug. I usually have to go hunt those down. It felt really wonderful.

Jacob weighs 86 lbs. He got down to about 75 lbs last fall. His feet have grown two full shoe sizes (size 8 mens). He has also grown a couple inches, but I forgot his exact height.

Dr. Mathias Called

Dr. Mathias called today (Jon took the call since she called his cell phone) to tell us that Jacob's scans look great - all clear. She'll get back with us to set up the surgery to have his port removed.

Breathe - sigh of relief - BIG smile.

3 Month OT Scans

I accompanied Jacob to the hospital for his 3 month off treatment follow up scans today. He had a CT & an ultrasound scheduled. We played Phase 10 in the waiting room. The game was close. After finishing his orange drink, he was called in to get his IV for the contrast. He stood up and said, "Mom, could you just wait here and watch our game. I can do this on my own."

I've gotta say how proud I am of Jake. Just three months ago he was in tears getting the IV & he was vomiting BEFORE getting his port accessed (needle put into his chest & through his port-a-cath). I also had a sneaking suspicion that he had a REALLY GOOD hand that he wanted a chance to play.

The nicest nurse came in to talk to me. She recognized me, but she didn't recognize Jacob. His hair is so full and curly and blond. It originally came in so dark, but it's color looks so much like last summer - sunkissed. The curls are new & adored.

Sure enough he whooped me good in our card game.

The radiology technicians are so friendly. They kind of have a rough job. Their patients & families are PRAYING that there will be NOTHING to see on their fancy scan. We want it to be boring, routine, & CLEAR. I imagine it's much more medically interesting to see a difficult case. But then they also have to look into the faces of those families and know that the report they are sending back to doctor is going to crush them. Kind of a rough job.

We won't get an official report until next week.

Next we went to ultrasound. I watch this one being done. I couldn't see anything suspicious on the monitor. All the clicking and measuring sounded normal, but what do I know.

Later we went to the car to fill Jacob up with PopTarts for breakfast. We played a second game of Phase 10 (I lost that too) as we waited for his port to be flushed by the oncology nurse at the clinic. The clinic was totally crowded. The kids getting labs, doctor check-up, & chemo are going to be there FOREVER. I was so happy that Jacob wasn't getting chemo. Having all those chemicals in his system really made him and me sad.

I watched a three year old help the oncology nurse push in his saline between chemos. His biggest concern was that they were going to give the medicine in his line and NOT by injection in his arm. He didn't care how many medicines there were or how much he would throw up later - just no needles. Then he continued building his blocks & talking to the nurses. Cutie.

Finally we returned to Denny's Diner which has become our special date place. Jacob ordered alien pancakes minus the cherries & cream with chocolate milk.

Neglected Blog

Isn't it wonderful that this blog has been so neglected. We haven't been swimming in cancer drama- just daily family drama. We are so happy that Jacob is off treatment (no more chemo) and that his scans are clear. He returns to the clinic monthly to get his port flushed. He has scans again in May and when those scans come back clear we will go ahead and have his port removed.

Jacob has returned to public school and is enjoying being surrounded by friends. He's only behind in his cursive handwriting. When we were in Utah he went swimming again. Several weeks ago I took him to the beach to play. We aren't going to return him to sports too soon. Jacob grew two inches and 2 shoe sizes in the last 7 months. He does have some after effects from the chemo, but he is also a bit awkward and uncoordinated :)

His hair is wavy and filling in nicely. His eye lashes are almost as long as before. He said goodbye to his counselor, Liz and he seems to be able to manage his emotions better when prompted. He probably ought to continue with some physical therapy, but it keeps getting squeezed out of our weekly schedule.

Friday, February 13, 2009

Jacob had his last chemo on January 16th. That was the last time we were at the clinic and the last time they accessed his port. While he has a port (which will likely come out in May/June), it needs to be "flushed" once a month. Jacob was also scheduled for his end of treatment scans. I knew this wouldn't be the funnest day ever. It was so nice drifting away from the weekly clinic appointments.

First on the list was the CT scan - chest, pelvic, & abdomen. Jacob had to go fasting which just adds to the fact that he doesn't want to go. We arrived at the hospital to check in at 9 a.m. and then went to the waiting area. I taught Jacob how to play Rook. He caught on quickly and started racking up the points. He was delighted to drink his "orange drink."

Sometimes I'd like to tell the person who who puts in the needle to put a cork in it :) Jacob gets real emotional. It's how he deals with the fear and anxiety. This time was no different. I believe sobbing was involved with heavy bouncing of his caved over shoulders. The guy kept saying that Jacob had good veins and it only hurts a little bit like a pinch. Then he goes on pinching his arm and asking if THAT hurt because the needle will be just like that. SERIOUSLY!!! My kid has been having needles stuck in him weekly for months - he just doesn't like it, so get it over already.

I think the guy was fishing for the vein a bit too. That didn't help - especially about all his talk about how big and easy Jacob's veins are. But once the IV was taped and installed and a toy car was handed to him, Jacob moved on. "Let's go finish our game."

We were taken down to the basement and told to walk the halls. They wanted Jacob to get the orange drink circulating. His turn came along soon after that. Jacob lies down on a moving board with his arms resting overhead. But before the contrasted is hooked into the IV or the scanning starts, I'm invited to exit the room to wait in the hall.

I was tucked in a corner on a rolling chair (there's not really a waiting area in the basement and with the construction going on they wanted me out of the way). My mind is wandering through the past several months. My heart is hoping that there's nothing for them to see in my little boy's body. My body is fatigued, yet tense.

I was the hero for packing S'mores Pop Tarts. We sat in the car eating and making small talk. We still had 45 minutes before our Dr. appointment. Seems that his mind turned to that fact and he got upset. I told him we didn't have to go yet. The pep talk went something like this:

Jake, it's really only FIVE minutes that yucky. Just remember that. It's not bad when Dr. Matthias exams you. Is it?

No.

It doesn't hurt to wear the blood pressure cuff or to stand on the scale. It's not bad when we sit in the waiting room and play cards. Right?

Yeah.

It takes less than five minutes to access the port and they aren't putting any chemo in, so you won't feel sick. The numbing cream helps so it doesn't hurt. Right? I know you don't like the heprin, but let's not worry about those five minutes. The rest of the day is pretty great.

I eventually convinced him to head over, so we could continue our Rook game. He wasn't in a rush or anything. He always walks slowly through the doors and quickly on the way out.

He totally whipped me on Rook. I didn't have a chance. Playing cards or Life board game is something we do together. The points kept adding up in his favor. Then the nurse called us back. He seized up a bit, but I reminded him - height, weight, say hi to Dr. Matthias...

Going to the clinic has been hard on him EVERY week. It's exhausting to walk him through it. I'm torn between being compassionate for him and his feelings and needing to be strong enough so when he pushes against me I help him move forward. I make the nurses wait on us and I make Jacob sit up and do it.

It's exhausting for me to see my long lanky son curled up in the fetal position in hallway. He dreads walking through the door to the exam room where they access his port. The nurse asked if he was ready. I wonder why they still ask him that. He'll never be ready. He just has to do it. Jacob chose for the nurse to continue on to another patient and come back - prolonging.

There was crying and dripping tears. Every motherly instinct tells me to pull out the claws and bare my teeth to subdue the enemy preying on my cub. But that's not how it works for my boy. I have to figure out how to walk him through the door, sit up tall, push his chest out, and be still.

I suggested we continue our game in the room. He faced with his back to the procedure area. He won more points.

It took great coaxing to get Jacob to turn around, remove his shirt, and stop whimpering. He asked for the garbage can and we waited for every last bite of his PopTart breakfast to be purged from his system. Then he was able to do it. He feels so much better once he's purged all his anxiety.

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

I told myself to wait until the doctor had all the results from the tests that day and the following Wednesday. Part of me longed to know the CT results. I expected them to be clear. I told myself that if the unexpected was coming I should give myself a few days before I had to face it.

I was particularly calm on Sunday. Many friends inquired about his tests. The spirit spoke peace to me. I find that it's important to savor the calm. It doesn't always last long.

We ran into Jake's doctor at the hospital the following Wednesday. She asked, "you got my message?" I said, "no." Apparently she had called on Friday to let me know that the scan looked good. I never have found where that message was left - not on my home or cell nor Jon's. I guess sometimes it's better getting the news straight from Heavenly Father.

Faces of Sarcoma

Jacob's photo was added to the Faces of Sarcoma Project. You can see it HERE or on page 20 HERE I guess I should note that I asked Jacob if he wanted to be included on the internet. I thought we might post a pic of his eighth birthday party with his blond bushy hair. Beautiful, healthy, even young people are afflicted with cancer more often than we would like to think. But he suggested that we post a bald picture - because if not "nobody will be believe me that I had cancer."

Scanxiety

The tightness clenching my chest began last Sunday. I try to ignore it and breathe in deeply, release my shoulders, roll my head. There's no denying the tension headache or the difficulty falling asleep, though I'm exhausted.

There's the vision of walking back through those hospital doors and being grabbed at the ankles and dragged back into a life that I don't want to be a part of. We are happy walking away from the treatments, the clinic visits, the endless waiting. We are happy walking toward other adventures - field trips, family vacations, public elementary school, and swimming pools.

It's undeniable how the worry creeps up. I didn't expect it DAYS before the actual scans. I thought these scans would be the least scary - he's been on chemo for 6 months. How could there possibly be anything to worry about? Though I tried not to worry, my body told me that worry lingered - even while my spirit tried to whisper peace.

Then it leaves for a while. I enjoy the day with my kids at the KidSpace Museum. I race through days of carpools, physical therapy, 4th grade plays, and getting kids to birthday parties. Then it's scan time.

Love Notes

Jacob has been writing me more love notes - kind of like he used to before he got sick. He employed Jessica to be the mail carrier. In a recent note I received a paper, pencil, and envelope with instructions to "write back." Here's my love note.



Dad has taken Jacob to his scans the previous two times. I planned on escorting him on Friday and was hoping that he would be agreeable to that arrangement. I was happy to see "yes."

On the Way to Physical Therapy

As Jacob & I drove to physical therapy, he turned to me and said, "I feel like I'm a normal person again."

"You didn't think you were normal before" I replied.

"I was like a cancer person." he said.

"Do you think there's a difference between a cancer kid and a regular kid?" I probed.

"Yeah, a lot of them."

"What's something you notice that was different between a cancer kid and a regular kid?" I continued.

"you know."

"But what did you notice that was different for you?" I pushed.

"Cancer kids have chemo and other kids don't." he said.

I agreed and pushed for more.

"Cancer kids have to stay in the hospital."

I continued to push to have him open up his thoughts, to which he said, "I'm only saying one more... Cancer kids have to have surgery."

****

I'm so happy that he is feeling more like himself. I hated to see the disease snuff a piece of his personality.

It's Back

Here's a phrase that had gotten phased out, but it's back:

"Jacob, go brush your hair."

I posted this picture because it gives a side view. He had the top combed with gel. The sides reveal his waves. It was like that when he was a baby.

What's Up?

Yesterday Jacob asked, "Do I go the the clinic this week?" I said, "no. Next week." Then he grinned from ear to ear.

He has been writing me love notes. One of them I had to read with a mirror because he can write backwards. He also made an advent calendar of sorts. It's a countdown to Mom's b-day (I must admit when I first saw it at a glance I thought it said - countdown to Mom's baby. WHAT?!). Anyway, he's been keeping track so we don't forget that I turn 36 on Thursday. I think he just want us to remember to serve cake.

Another special thing Jake made for me is a treasure hunt. You can see the whole thing HERE.

We are also finalizing our plans for Jacob's baptism. We are very excited to see our family and have them share this special event.

I keep taking pictures and taking notes in my head, but it's been hard to keep up the blogs. I still would like to share Jacob's illustrated story of his cancer experience.