An Interview w/ Jacob

Jacob is not really interested in writing about his experiences or even talking much about it. It's not in his personality to be real chatty, but when you do get him to talk it usually carries some weight. I did convince him to answer 8 questions (because he is eight years old) so his cousins would know some answers from him.

What do you remember about surgery? [Referring to his out-patient procedure when they removed his tumor].

I don't know cause I didn't see them do surgery. I remember going into the operating room. The room was white. Then they put me to sleep by putting a mask on my face. It smelled like bubble gum. [He doesn't remember waking up, but Jon & I were there watching him wake up. He cried. It's hard for kids to come out of the anesthesia. Their emotions are real raw. Jacob has a hard time waking up anyway. I think he was also a bit uncomfortable until they gave him some pain meds. He didn't seem aware for all of that. Not until they started offering him treats]. I got two popscicles & apple juice- I threw up one. The sleep medicine sometimes makes your tummy throw up.

What test was the best? [I was probing him to answer what test was the scariest, but he wanted to say the best one. See next question].
The blood test. It squeezes your arm. [I think he's referring to the elastic they tie around your arm].

Were you nervous for any of your tests?
No. [Jacob actually likes to watch them insert needles into his hand or arm. He watches the blood draws. He watched them take out the thumb tack looking needle from his port. WAY braver than me].

Does cancer hurt?
No. [Truly it's the side effects of treatment and the procedures that inflict the discomfort. His type of tumor usually doesn't present with any pain - that's why a diagnosis is so difficult].

What does it feel like when you have chemotherapy?
It makes you sick [nauseous], but I don't really feel it going through my line. [He has a port which is a device that was surgically placed in his chest that connects to the central line. They place a special needle through his chest skin into the port and then all his blood work, IV fluids, and medications go through there].

What bothers you the most about having cancer?
I can't go to swimming lessons & I can't play basketball. [These were two activities that he was involved in when he had his first surgery. He still isn't supposed to play in a league, but after his stitches heal he can shoot baskets in the backyard. He may also be allowed to swim down the road when his counts are good because his port is completely covered, but still no beach, ocean or sand].

What about having home school? Kind of.

What about losing your hair? [He got a big grin]. I think that's cool. [He did tear up when he first learned about that, but he doesn't seem bothered now that he's had time to think about it. He met a cool kid, Daniel, at the hospital who was completely bald. He was kind of like the Oncology Unit Class President; the role model for kids going through chemo].

What about nausea? What's that?
Feeling like you have to throw up. I don't like that.

Would you like to tell me what you did at the hospital?
They gave me two games & two Lego sets.

[Jacob kept asking how many questions he had answered so far. I wasn't counting the follow-up questions, but he was making sure I didn't get a chance to ask more than eight].

Are you done answering questions? Why don't you like answering questions?
I'm bored.

Beads

The pediatric oncology unit at Loma Linda University Children's Hospital has a program where they give their patients a beads to acknowledge the procedures, tests, and experiences they have. We were presented with a long string and a bag of beads. These are the ones that Jacob has "earned" so far. This lasso of trinkets will represent Jacob's journey. (Not all beads are pictured).

Gold Ribbon Charm - cancer diagnosis
Ribbon Charm - welcome to Candlelighters Cancer Organization
Silver cat bead - CT scan
2 Blue Star - surgery
Biopsy Bead
Purple Teddy Bear Bead - Hospital admission
Colored bead for IV start
3 moon beads for his 3 sedations
Bone Marrow Aspiration Bead
Nuclear med scan bead for his bone scan
Gold Courage Charm for Central Line Placement (Port)
Red star with a yellow center - Port-a-cath Access Charm
Bone bead for X-ray
Dragonfly charm - Isolation (Jacob was removed from his shared room and his access to the playroom because he had the chicken pox vaccine. Because this injection is a live virus there is a tiny possiblity that he could display symptoms. Chemo kids CAN'T be exposed to chicken pox. So to protect the other patients from the rare possiblity of him getting chicken pox from his vaccination that he had two weeks prior, he was moved to his own room. All persons coming in and out had to wear yellow gowns).
Green Wooden Bead - course of chemotherapy
Butterfly bead - oral meds (he takes Zofran for his nausea)

Receiving Relief

There have been many moments that have taken my breath away the past couple of weeks. I found sweetness walking through the grocery store with all four of my helpers. I sincerely enjoyed having them all around me. Before I considered this experience to be torturous and taxing. I don’t like walking slowly through stores answering a million questions and having them make suggested amendments to my list. They normally swarm around and I can’t walk straight with them buzzing about. But my perspective has changed.

Other moments have been like I’ve been socked in the gut. Hit with disbelief, shock, and anxiety. Challenges have emerged in ways I hadn’t expected. I’ve had moments where tears would not come and others when they could not be held back. I’ve carried a weight in my soul, but sometime I hardly noticed it there. Sometimes my burden has been lifted giving me relief. Other times the weight is squarely on my tight shoulders. My spirit is given an underlying assurance that I can do it. That Heavenly Father will fortify me. Assured that I've been given gifts and talents to make this all work. But my mind doubts. My thoughts are overwhelmed. My body aches. My heart is grieving. My emotions are drained.

I’ve always believed in God – since I was a very little girl. I’ve trusted him and He’s trusted me. He has always watched out for me – even when the answers to some of my heartfelt prayers have been “no.” My parents taught me to turn to Him even when I was too shy or embarrassed to ask for help from anyone else.

I have been gifted a dynamic Visiting Teacher. Donna started visiting me a few months ago. She's an extra mile kind of gal and this has been VERY obvious as our cancer drama has unfolded. Donna is also the Compassionate Service Leader. She has called and asked how she can help. The truth is that I haven't exactly known what I've needed. There's been so much to figure out. I have confessed to her that I'm not very good at calling out for help, but I usually will take it when it's needed and offered. So, she has adapted her kindness and resources to my personality. She calls with a list of ideas of how she might help, so I don't have to think of everything.

The day before Jacob was coming home from the hospital we met with a nurse who basically said - clean the house from top to bottom by tomorrow. We wanted to remove any possibilities of mold, mildew, bacteria. We also wanted to eliminate dust and dander. I felt compelled to get home and get cleaning. My friend Jolie asked what she could do to help and I invited her along. She was there in less than 2 hours. Since I recognized a need, I gave Donna a call and within 2 hours she had herself and a crew of sisters at my home.

Not only did the kitchen (including the fridge) & bathroom & Jacob's bedroom get cleaned, but the other bathrooms, bedrooms, family room, front room, & laundry room, along with mopping were all completed in a few hours. My home was more sterile and dust-free than the hospital at that point.

I felt a rush of relief knowing that help surrounded me and that we had created a safe environment to bring my son home. I have no idea what chemo is going to do to his body. I needed our home to be a safe refuge for him.

A million thanks for doing the dirty work goes to: Donna, Jolie, Sheri, LeeAnn, Judy (who came on her birthday), Sharon, Agnes, & Anna.

First Hospital Visit - Video Clips

1st Hospital Stay - Part 1

Welcome to Loma Linda University Children's Hospital. This is a place that we will come to know too well. The clinic is just across the street to the south. So is the outpatient Surgery Center. So is Dr. Chamberlin's office. This little block is our other little home.

Sunday afternoon we lost track of time. We kind of wanted to pretend we weren't going to the hospital already. We arrived a bit later than 3 p.m.

When we arrived at the hospital, everyone wanted to check Jacob out. And EVERYONE wanted to ask Jon & I the same list of questions - How was the tumor found? When? When was it removed? etc. We talked with the nurse, pediatric resident, patient roommate (teenager with a brain tumor), & a representative from surgery.

Jacob tried to ignore all the people coming in asking questions. He was trying to watch tv. There's a nice Adventist channel with cartoon bible stories that are pretty good. I can't help looking at my 8 year old and still seeing this little beautiful baby boy.

Jon spent the night on Sunday. I returned Monday mid-morning. There was some debate whether the surgeon would be able to get Jacob on the schedule to insert his port or not. Jacob was listed as a priority and was on the list to be worked into the surgery schedule. We did know that the bone marrow aspiration was scheduled for Monday around 11 a.m. Jacob would be sedated for that procedure. I didn't leave home in time to see Jacob until after he came out of the procedure. When I talked to Jon on the phone, Dr. Matthias had authorized the PICC line since the surgeons wouldn't commit to doing the port surgery. We were trying to wrap our heads around that idea when a nurse came down the hall with a form for Jon to sign to do the port instead. Jacob was sedated. Bone marrow test done. No central line access. Now we wait for when we fit into surgery. This meant NO FOOD.

Jacob also needed his bone scan. He was loaded in a wheelchair and then we wound around all these different departments until we arrived somewhere in the basement. Jacob had been gifted a little bear that he kept with him. He hasn't been in to stuffed animals - well, ever. But he turned all softy little boy with this bear.

An urgent case arrived in front of us, so we had to wait another 30 minutes before the scan. I called up to Jon and he was able to bring the DS down to keep Jake occupied.