Side Effects

I can't tell you how sick I felt after reading all the fine print of all the possible side effects of the chemotherapy drugs. The premise is that you inject poison into the blood stream by my son's heart, let it pump around and kill all the rapid dividing cells (including the red blood cells, white blood cells, hair cells, etc.), treat the side effects, and hope that by doing all this it means that we never see another tumor. If you saw the damage that these drugs could do to your baby, you too would think twice before letting the doctors use it.

Thankfully, Jacob has suffered few of the immediate side effects and most of them have been in the common column not the serious but rare column. But his tummy is very tender to the nausea when they give him the "triple combination." The Zofran hasn't been able to mask it completely. They actually start the Zofran (anti-nausea med) before giving the chemo. Then he gets a dose every 6 hours whether he feels well or not. A steroid was added to his meds this time, which I didn't think made a noticable difference this time. Benadryll works with Zofran to enhance the effect. How it works on Jacob is that it basically puts him to sleep, so he doesn't feel the nausea. But even with all these efforts, the medical staff feels like we could find a better balance so he doesn't have to suffer so much. He completely loses his appetite (I couldn't even get him to eat ice cream or his favorite crackers or sugar coated cold cereal).

I talked to Jon this morning. They'll be on their way home today. He was awake and perky at 7:00 a.m. He may still have nausea or vomiting for the next couple of days, but he is too well to be confined to a hospital bed. It just seems that he needs 2 1/2 days to let the worst of it work through his system.

His head still is covered with peach fuzz. It's amazing how many bleached blond hairs he has. The darker hairs seems to come out first. He may still be moving toward a completely shiny bald head. At times his hair has bothered him. I think he felt embarrassed that he looked like "an old man" instead of a cool bald guy.

He is extremely sensitive about his port. He doesn't like anybody to touch him hear his left side. I don't think his needle was positioned the best this time. He was very cautious about his tubes tugging. He would walk around WAY hunched over so the cord wouldn't pull on his chest. He looked like a little old man hobbling down the halls that way. I expect to see him in my front room playing Mario Dance Dance again soon. I probably will also see him lying on my couch with a barf bucket nearby.

Now I know why they make teddy bears, bracelets, & bumper stickers that say, "CANCER SUCKS."

2nd Trip to Hospital

We opted to do this chemo treatment in the hospital since Jacob needs TONS of fluids to move the third drug through his system and he was so nauseated last time that he didn't want to drink on his own. He's still in the hospital today - feeling lousy and fine off and on.

He & I drove to the clinic at 7:30 a.m. yesterday. We waited around for a bunch at the clinic to get his labs drawn (they need to check the blood levels before he can be admitted to the hospital - too low is a no go). We stepped outside to have lunch and so did the whole nursing staff because nobody called us to say the numbers were good. So we waited around extra.

At 12:30 p.m. we were filling out paperwork to admit to 4800 (the hemotology/oncology unit at the Loma Linda Children's Hospital). Just after 1 p.m. we made it to Jacob's room that was bedless. Jacob watched tv & I went to 3700 to the pump room. Jacob was anxious to get to the Playroom that didn't open until 2 p.m.

His IV fluids didn't even get started until about 5 p.m. There are just all these logistics that get in the way. The nurse has to do her admitting stuff first. Then she has to wait to get orders. The person who writes the orders was in a meeting. Then the orders are written and we wait for the fluids to arrive. Then Jacob is happy in the playroom so they don't want to yank him out - let him get comfortable first. Then we visit and discuss the plan - maybe we wait until morning to start the chemo. I'm thinking, "are you serious?!!! I got up at 6 a.m. today so we could start the treatment TOMORROW morning?"

Everything in the clinic and in the hospital goes in slow motion. It's grueling because Jon's employment and our other 3 kids and all the friends who have volunteered to watch them are in the other world - where the clock is always ticking and life keeps pushing forward. It's a trick stepping in and out of this 6th dimension.

After sufficient fluids saturated Jacob's system, the chemotherapy was started at 3 a.m. He woke up throwing up stomach bile even though he was on Zofran. He was given a steroid & later Benadryl to help control the nausea. In the later afternoon he was in the playroom while Jon went to his Bloomington office to get on the Verizon network and download his files.

Jacob had a difficult evening - feeling sick. Not eating much. Another dose of Benadryl took him down for a late afternoon nap. Now we wonder if he'll sleep tonight.

It's drug #3 that requires all the hassle. It needs to be flushed through the system which is why the patient has to be very saturated. They it's harmful if it is held in the bladder, so Jacob was woken up every two hours to urinate. He also receives a medication to line the bladder to protect it from the toxic chemical as it comes through. We are even supposed to be careful with his urine and vomit for the next couple of days because it's toxic. Sincerely - WHO thought of this? Does poison really count as a treatment - even if it's helping? Now I understand the crusade to find a cure.

We hope Jacob will sleep well tonight, hydrate, and start eating & drinking. With any luck we'll be bringing him home tomorrow. We really hadn't planned on two nights. My visiting teacher just lined up 3 more sisters to care for our family throughout the day tomorrow. I'll go relieve Jon at the hospital and he has to go to work so we still have a job next week.

Happy Labor Day Weekend!!!

The Poop Pill

One of the main side effects of Vincristine is constipation. To help with that a daily stool softener was recommended. I keep a notebook in the medicine cupboard so I can keep track of all this stuff. Jacob usually takes his own temperature and writes it right in the middle of the page - not in the right column like I do with a little square doodle around it. He had to learn to swallow a pill. It took him a few tries at first, but he's a natural now. I asked him to come take his pill today and he said, "oh yea, my poop pill."

I'm get to track his regularity since not pooping for two days warrants calling the oncologist.

Parting Ways

I originally drafted this post in my mind after I took James and Jacob for hair cuts. I asked Jolie (my good friend and fantastic hair dresser) for a longer hairstyle for Jacob because I didn't want her to trim off the blondest part. His hair sprouts a darker shade and then bleaches out in the sun. The top is so sun-kissed. I love it!

When Jake spiked his hair, his cowlick in front worked in his favor. The one in the back wasn't as noticeable. Jolie noticed the one in the back as she tried to get his hair to lay down. She suggested that we part it on the other side so we are working WITH the cowlick instead of against it. Notice the parts in the above photos. The photo on the left is how we've always parted it and the one on the right is the new way.

Well, now we have even more hair issues. I mentioned that it's been falling out. Now it's more like we have a long-haired pup running around. I find hair on Jacob's chair in the kitchen, on the pillow, on the couch where he lies, etc. On Monday the boys were giggling by the Wii. They had created a new character - a bald Jacob. I guess if we have no choice about it, we might as well catch the laughs that we can.

We debated whether to cut it or not. Jacob said yes, then no. I told his to think about it. We weren't going to shave it bald, just buzz it short. We decided that it would be our Family Night activity.

I had cried about his hair earlier, so I tried not to cry while cutting. I just puckered my lower lip. I clipped the sides very short and had Jacob hold a bucket to catch the hair. I plan to put it in a fancy bottle and keep it on the mantel until his hair grows back. We decided to do a mohawk. It was kind of a botched job on my part. This was kind of spontaneous and I didn't really measure. But once it was wet with gel you could get the idea.





The following day when the gel wasn't in it looked more like a raccoon tail on his head. A few bald stripes showed up, so it was good the bushy part was flopping over it. Jacob got all geared up. His chess masters tee paired with his brother's denim shorts held up by his army belt which held his sword & sheath (ie. vacuum accessories).

Today the front was way thin and bald spots appeared. It seems that the areas that get touched the most come out easier. So the buzzed part is still there, but the mohawk part came out quicker. I don't know - maybe the top always balds first. Anyway, you can see that we buzzed the rest. All the hairs flying around the house are bugging my allergies.

The good news for Jacob is that even though he has BEAUTIFUL hair - he hasn't lost his best features. He has his moon-sparkle eyes, rosy cheeks speckled with freckles, and the sweetheart lips.

Hair (or the lack of hair) is a BIG DEAL in our family. Jayson has the carrot top. JessiLu had the adorable curls and now the long locks. James has thick, wavy, starched white hair. Jacob is a standout again with his new buffed head. And like I promised him before, I love him no matter what his hair looks like.


P.S. Not all patients lose their eyebrows or lashes. I'm hoping that Jake gets to keep the frames for his beautiful eyes.

I'm Still Going to Miss it

Last Sunday, Jacob asked me is we could shave his head the next day. He seemed anxious to be bald. James has caught him in front of the bathroom mirror holding his hair off his forehead trying to imagine what it would look like when it's gone.

I'm still holding out. I haven't even minded that he hasn't combed it all week. I like to see the big fluffy bush on his head. But we are expecting that it will fall out around week three after chemo starts. Dr. Matthias suggested cutting it earlier so the strands don't get in his eyes and bother him.

I've run my fingers through his hair - partly to savor it and partly to see if any was falling out. I haven't noticed any signs. But this afternoon Jacob said his head was itchy. I ran my fingers through again and several hairs have come out. He said that some had gotten into his eyes. Then he said, "I think my hair is starting to fall out." I suggested that we do the hair cut sooner than later. He almost seemed excited. "Am I the only one that will be sad when you lose your hair? " I asked. "I know it will grow back, but I'm still going to miss it."

Then he said, "I'm going to miss it too."

Accessing the Port

Jon took Jacob for his first chemotherapy treatment at the clinic today. I feel really torn with the whole treatment thing. I feel like I should brave the treatments with Jacob, obviously I wouldn't send him alone. But I also have three other children who need to be watched, fed, & in one case nursed and changed.

Thankfully Jon is able to flex his schedule and he is willing to be there with Jacob. This freed me up to care for the kids, go grocery shopping, and prepare dinner. So many people have offered to help, but I'm kind of holding out for when Jon and I can't cover it. We'll be need help off and on for a long time.

I tried to tell Jacob what was going to happen, but he doesn't want to hear it. He doesn't really want to go, so he tunes me out. It would have been nice if he heard my explanation. When he got there, he misunderstood and thought they were going to cut his incision spot back open while he was awake. He was shielding his chest. They struggled with him for about 20 minutes and then they had to hold him down. Once they got the special needle (that looks like a one inch thumb tack) into the port he said, "that didn't hurt." It's amazing how fear or misconceptions hurt way more than the truth.

Chemotherapy Treatment Plan

There is a nationwide protocol that children with Jacob's diagnosis receive. Our doctor is part of the Children's Oncology Group (COG) where they share information and treatment plans. If we lived by another reputable hospital, his treatment plan would be the same.

Jacob will be in treatment for about 9 months. Then there will be follow-ups with CT scans, ultrasound, or X-ray. This type of cancer does not have a special test to let you know "if you've got it" or not. There are no identified excretions in the blood (tumor markers) that you can watch to see if they are going up or down. We've taken out the tumor, so we aren't measuring something and watching it shrink. We are at chemical warfare with microscopic cells. It's a bit unsettling. Success in treatment is achieved by not having more tumors develop. Doctors say that this type of tumor ALWAYS comes back if left untreated. They do have a high success rate when they follow this regimen.

So this is what we will be doing:

Phase 1 - 12 Chemotherapy Treatments
Jacob will receive four cycles of treatment in Phase 1. Each cycle is about 3 weeks.
The round begins by giving him a combination of three drugs (this is what we did last Wednesday). He also takes Zofran for nausea and another medication to protect him from the side effects of drug #3. This treatment might best be done in the hospital because he needs to receive large amounts of IV fluids.
On week 2 of the cycle, we go to the clinic. They'll access his port and draw blood. After his blood counts are accessed, he will receive an injection (kind of like a booster) of just drug #1 from the triple combo.
On week 3 of the cycle, we'll do the same as we did for week 2.

While this is all going on, it is expected that his blood counts will drop -usually 7-10 days after chemo. This is when his immune system will be especially susceptible. If his counts aren't in an acceptable range, we take a week off of chemo for them to come up. We will be tracking Jacob's numbers to know his pattern.

Half Point Check
This is where he will have additional CT scans to make sure there are no signs of new tumors. If something comes up, we would be looking at radiation or surgery. We don't expect this to be the case. Our assumption is that the chemotherapy can kill off the stray cells before they have time to create another problem.

Phase 2 - 12 Chemotherapy Treatments
From our understanding at this point, these four cycles are much the same as phase 1 except that we drop drug #3 and proceed with a 2 drug combo.

SO what does this all mean. It means that I'll be sitting a full day at the doctor's clinic EVERY week. Only patients and a parent go to the clinic. So, I'll need somewhere for my other three kids to go. I'll need help getting them to and from school.

We will have times when we can't leave the house. We will have times when the common cold could mean a 2-3 week stay in the hospital. Then there's also plenty of room for surprises. Infections can come from other people, but most often come within the patient's own body. We might need blood transfusions if the counts get too low.

It's a lot to take in. There is no shortcut. You can't finish the course early. We are in for the long haul. The expectation is that he would be "cured" - meaning no recurrence of tumors.

Call the Oncologist

We received regular tutorials by the Patient Educator Nurse in the hospital. She gave a tour that showed us where we could find the hospital pharmacy, unit 2800 where we would go for blood transfusions (I was thinking: WHAT?! You are talking like this is a regular thing. I'm just learning that blood transfusions are a very regular part of most chemotherapy patient's treatment), and then she proceeded to show the clinic (I skipped that part because I was there the week before). We were also given a 1 1/2 inch three ring binder that serves as a cancer manual. Inside the front cover was a laminated list with magnets attached for our fridge. It lists all the contact numbers for our doctor or the pediatric oncologist on call AND a huge list of reasons to call.

CALL THE ONCOLOGIST FOR:

* Fever of 100.4 or great (this is considered a MEDICAL EMERGENCY)
* Shaking chills (even without fever)
* Any signs of infection, low platelets, or anemia
* Any problems with the central line such as redness, swelling, or discharge
* Bleeding that cannot be stopped in 10 minutes
* No bowel movement for two days
* Distended, enlarged, hard, or painful abdomen
* Diarrhea lasting more than two days
* Any signs of dehydration
* Vomiting, especially if your child cannot drink of keep medication down
* Mouth sores or rectal sores
* Rash, blisters, or ulcers on the skin
* No urine or severe decrease in urine
* Blood in urine, dark colored urine, or pain with urination
* Exposure to chickenpox
* Headache, blurred, visison, double vision, or change in behavior
* Shortness of breath
* Any changes, any questions

Abby, our Patient Educator, told us to call for ANY of these reasons - even if it doesn't seem like a big deal. We hadn't been home 8 hours when Jacob threw up. He then proceeded to eat dinner and bounced around the house like nothing was wrong.

I had no reason to be alarmed, except that vomiting was on the list. I was more afraid of not calling. So being the weekend I had the on call pediatric oncologist paged at the hospital. He assured me it was fine and I could up the dose of Zofran if needed.

I didn't wake Jacob up to give him medicine at midnight. But when I came down the next morning to give Jacob a dose he had already lost his stomach bile and then again the water that he drank to rinse. I kind of felt like an idiot calling again. Olga reassured me that I was doing the right thing with calling.

Along came Sunday and I noticed a rash on Jacob's shoulder and on his chest by the port. It didn't itch or bother him, but it was on the list. It wasn't spreading and it wasn't the same rash he had a week ago with his fifth disease. Then I started worrying about the fifth disease and how harmful this little virus can be to kids with weakened immune systems. I didn't think it was necessary to haul Jacob off to the hospital, but again I called the oncologist on call to report.

Jon called the doctor and answered a bunch of questions about the rash. I tried to keep busy. I didn't want to worry and I didn't want to wake Jacob up to drive to the hospital so we could sit in waiting. She went to research the symptoms and then called back and I spoke with her. She spoke with me for quite some time. I felt like an idiot. I'm basically not supposed to do anything for my son without running it by the oncologist. I don't want to miss anything and everything is different when you are pumping your baby full of toxic chemicals.

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.