People always ask what they can do for us. We do appreciate your prayers and service in our behalf. We'd also like to ask you to leave comments on the blog or directly in our email sometimes. Just a little note so that we know that you've been here and know what's going on. For Jon & I it is these little reassurances that we are not in this alone that mean the world.

Saturday, February 28, 2009

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."

Friday, February 13, 2009

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.

Thursday, February 12, 2009

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.

Wednesday, February 11, 2009

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.

Tuesday, February 3, 2009

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.

Children with Cancer are like Candles

Thanks to another Rhabdo-mom for sharing this quote:


"Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light."