Time to Rearrange the Calendar

We've rescheduled our Thanksgiving plans to be holed up at home rallying around Jacob after his chemo. It's best that we stick together, watch movies, stay low-key, etc. We miss the idea of mingling with friends and we wish that some family could have traveled this year.

Well, just heard from Jon and Jake's counts aren't high enough to get his chemo today. His ANC needs to be over 750 and his is at 714. So he gets make-you-barf chemo next Wednesday. Which means that if you look down the road, his next barf chemo will be Christmas Eve. This may just be another year that our family has Santa come a few days early.

This is the first time that chemo has been delayed due to blood counts. I'm actually surprised that they dipped this week. His ANC was 1100 last Wednesday. But I guess they continued to drop this week. His lowest ANC count was 400 back on October 2nd.

ANC stands for absolute neutrophil count. This is the part of the white blood cell count that indicates risk of infection. Jacob has been quite blessed to have his counts rebound so quickly and stay steady throughout his treatment so far. Dr. Mathias didn't indicate that she wished to start injections to boost his white blood count. I guess we wait til next week.

4 Months

It has been four months since Jacob went into surgery to remove his tumor. That seems SO long ago. There have been many long days in between, but time keeps ticking on steadily. Some days seem to fly. Others progress only minute by minute. But time is constant. The worry, wonder, anxiety, celebration, or happiness that surround the steady ticking is what changes.

Appointments this Week

Tuesday Jacob met with Liz. They played games and read a book about emotions.

Wednesday Jacob went to the clinic. Dr. Mathias checked him out. He has been in good spirits. His body seems more energized. His blood counts have been consistently good. We do notice some neuropathy creeping into his feet. He can't flex real well. Hard to say if his recent stumbles have been because of flip flops that flip too much, the vincristine, or the fact that his feet have grown to a size 7 1/2 mens shoe (that's up a size and a half from this past summer). He still tends to compensate in his hands by flexing his wrists and not using his thumbs. His eyes still open quite wide - although I've seen the left one try to droop off and on.

This week was a Vincristine only dose. Jacob still struggles when his port is accessed. It's the anxiety more than anything. He has developed triggers just by seeing the syringes or smelling the alcohol wipes. The smells really gross him out. But he did it and was glad to buy some Skittles when it was over.

Thursday he returned to the gym for physical therapy. He started last Thursday. He's one of the few kids that I have seen there - certainly the only bald little boy. The staff all go out of their way to play with him and introduce themselves to him. They definitely make it seem like play and not work. Jacob is especially found of the bowl of candies on the front counter. Justin loaded up his bag last week and apparently Jacob loaded down his pockets on his own this week.

We didn't make it to the school to take his AR tests. We'll have to try again another day.

Hair Watch

A couple of days ago I was going to blog about the last two eyelashes standing. Jacob had one long curly lash left on each eye. Now they are both gone. He has stubble lashes coming in pretty thick, so in time it seems he'll have lots of lashes. He started regrowing peach fuzz. We weren't sure if this next round of chemo was going to wipe it out or not. He's going to let it grow. It's still quite fine - I call it chemo hair.

Meeting w/ Liz

Jacob has always been a private person. His words are his power source. You have to read between the lines or guess the right answer and read it on his face. It's been difficult to see him compress so many emotions, frustrations, misunderstandings, and stresses. So we have found a counselor to work/play some of these things through.

Liz is a therapist at LDS Family Services. I liked her instantly and Jacob has warmed up to her very well. On their first meeting they played Jenga (a new favorite). There are no needles or exam gloves - usually a scented candle burning; a cozy couch and chair; her desk, files drawers, & computer; & games.

Another appointment each week. How did we explain that to Jake? Well, sometimes when something very hard or scary happens in life - something big - like cancer, a counselor is someone who helps you feel happy even when it's hard. Jacob was excited to go to his appointment today.

They compiled a list together (that Jacob said I could share):

THE HARD THINGS JACOB HAS HAD TO DO BECAUSE OF CANCER
1. Port access
2. Surgery
3. Tape
4. Needle
5. Chemo makes me sick
6. Can't play in sand
7. Couldn't play in water for the first half
8. Couldn't ride bike

GOOD THINGS ABOUT CANCER TREATMENT
1. They treat me with good treatment (they are nice)
2. Already half way done with the treatment
3. No more cancer
4. Health

I am very proud of Jacob. He is trying to keep a positive attitude and move forward bravely. My sweet, brave boy.

Week 13

Jacob started chemo again on Wednesday. We actually skipped a scheduled week so he wouldn't be sick for our Sea World Day or for Halloween Night. He continues to get Vincristine each week although we've reduced the dose by half because of side effects. He also got a dose of Dactinomycin. There were a few episodes of vomiting involved, but he's been standing up to it alright. On Wednesday he skipped dinner and fell asleep early. But he's been eating since then and buzzing about.

I'm thankful that he hasn't fallen subject to the colds that the rest of us have had. James had an ear infection. Jessica had a cough for a few days. Jon & I feel pretty gross at night - congestion & sore throat. We are trying to wash our hands lots and wipe stuff down with wipes, but we all breathe the air in this house.

We went for a family bike ride on Saturday evening. I think Jacob misses getting out. He's not as tired right now because he had a break. He still loves digging in the sand. I try to keep him out of it. We let him play at the park even though sand probably gets kicked up a bunch. It hasn't proven to be a big enough risk factor to keep him away completely. It's good to see him riding around and playing like a kid. I like it when he stays a few steps ahead of the chemo instead of smashed under it's evil spell.