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."