Tuesday, July 31, 2012

Medical MJ??

Well, tonight is the last night that a bag of chemo will ever run through Jessie's veins. Hallelujah. After tonight, hopefully the days will only get better as far as side effects from the chemo. Last few days have been a little tough with the nausea/vomiting, but Jessie is hanging in there. She is looking forward to college and has that thought to hang on to. We applied for her to have an air conditioner in her room which she just received a call about this afternoon. She got it and was very happy to know that she won't be sweltering the first few weeks at school in a non-air conditioned dorm.  The person in charge also said that she could have a single room if she wanted. She declined saying that she wanted the full college experience.
Jess does have times where she manages to keep food down. She just polished off a bowl of fruit which was in the refrig from last night. She has to eat while she's feel good because it changes so quickly. I hope it stays down. She is on a "wave" of anti-nausea meds right now, benedryl, ativan and zofran. A friend suggested medical MJ if all else fails! I'm beginning to think that might be a good idea!!

Saturday, July 28, 2012

New Record Set

Jessie told me with as much enthusiasm as she could muster when I walked in the door today that she broke her record for number of times throwing up in one day. The new record is now 8.
The art therapist came in to ask her if she wanted to do some art and had a nice conversation with her. Jessie sat up for a few minutes to engage in conversation. Calmly and nonchalantly she reached over for a green bag and took one off the top of the stack. The green bag is kind of like a dog poop bag, but they have a hard rim around the top that you put your mouth into when vomiting. After a talk about Kermit the Frog and feeling green, she quietly said she was going to lie back down again.
She seems fairly quiet and peaceful now just surfing the web. I hope she has a quiet night.

Friday, July 27, 2012

Squeezing out the last drops of summer

Here we are again. Jessie had a bone marrow biopsy and an LP with chemo inserted into cerebral spinal fluid. They are going to hang her bag of chemo soon.
Her back is sore from the LP. So far no headache to speak of. (Remember last time she had a terrible headache for about 12 days or so. ) Just waiting and resting.
This time we don't have quite as nice a view, but can't complain because last time was sooooo good. She really enjoyed the fireworks.
Jess had a great time yesterday at her college orientation. An hour after we got home last night she had 10-12 friends over at the house for a few hours. She is squeezing every bit of summer fun out while she has time to enjoy!! You go girl!

Wednesday, July 18, 2012

Wooo Hooooo!!!!

ANC is 240!!! Much better than I expected. Seems like her body is really kicking into gear. This means a release as early as late afternoon today or early tomorrow! Yeah!! She will get to have a little bit longer break!! Yeaaa Haaa!!! Go Jessie go!!

Tuesday, July 17, 2012

Bobbing Weekend of ANC and Emotions


Bobble
n
1. a short jerky motion, as of a cork floating on disturbed water; bobbing movement

Jessie's ANC (absolute neutrophil count, the type of WBC she needs at least 200 of for 2 consecutive days to get out of here) is at 60 today. Friday it was 50, then down to 10 on Saturday, up to 20 on Sunday then today at 60. I think it may be on the upswing, but who knows! Tomorrow will tell. I'm being optimistic thinking that if it doubles today/tonight it will be about 120 tomorrow then Thurs and Friday should both be above 200 and she could potentially get out of here for the weekend.
Her mood has done some bobbing also. Most of the time she is very nonchalant and matter of fact. But I think the long stays are starting to get to her a little. Saturday she was a little down. Yesterday I saw an lighter mood. Her boyfriend came for the day and that definitely lifted her spirits. Hopefully soon she will be out for a 4-7 day break. Then ONE MORE ROUND!!  Say a prayer that it goes well and time flies by quickly.  :-)

These are players from DC United that came to have a short chat with patients on the oncology floor. I don't think these guys bobble any balls. Thanks Chris Pontius, Perry Kitchen and Danny Cruz!! Go Team!!

Friday, July 13, 2012

Tidal Wave

Yesterday I felt like a tidal wave was coming my way and there was nothing I could do to avoid it. Jessie had started to get fevers from various infections in her body a day or so before. The docs were starting multiple antibiotics and then just as her headaches were subsiding , they said they scheduled Jess for another LP to rule out infection specifically viral meningitis. Whoa.
How the heck could she have picked something like that up when I've been bathing everything and everyone in purell?? This is how these horrible headaches started in the first place - from cerebral spinal fluid leakage from the LP. There is no way that I wanted her to go through those headaches again. Poor thing was dry heaving from the head pain after getting up to go to the bathroom. Oh no. Not happening. Her headaches have just gotten much better. No more torture please. Late yesterday a chemo rash appeared on her arms and her knees. Doctor said it was fire engine red. Today it has subsided. She is doing the sprinting thing again from place to place because her leg muscles hurt so much. It looks so funny. I'm trying hard not to giggle.
Somehow we seemed to have avoided that wave this time. They started the antibiotics early this time so no 103 fevers. She is afebrile. Her rash is barely there. Doctor said sometimes patients get a sunburn-like red and then blister and peel and it is VERY painful. Thank God we seemed to have missed that one.

Although she has almost lost all her hair again- that was expected. Still a sore point. I think her short do had grown on her somewhat even though she says she hated it. She attempted to dye her hair blue thinking that it would all fall out anyway, but ended up dying her scalp blue instead! Mostly it has washed out, but with the thin hair there is a light blue sheen.
Good news today is that her ANC is 50. It has been 0 for seven days straight. We know it will probably bobble up and down before it takes a steady turn up, but it's nice to know her body is fighting. Keep up the fight my love!!

Tuesday, July 10, 2012

Spoiled Rotten

I come in her room today like usual, set down the food for her, do a general tidying up of her space (pick up empty medicine cups, empty bottles of water, take away leftover food trays, trash etc). I clear out the little refrig in her room of a few items that are a day too old. I take her dirty clothes down the hallway to the washer to do a load of wash. I come back to ask the question," How are you doing today?" She proceeds to tell me that she's been feeling dizzy and almost passed out at the food cart and that she is going to get a blood transfusion this afternoon. Then she says that she is "spoiled rotten". "Explain", I say. "Well, you come in daily, bring me food, clean my room, do my laundry, get me things..." Laughing I say, "Yes, you are a spoiled child".  Here's to my spoiled rotten child, may your good cells reproduce quickly and this summer fly by fast!

Monday, July 9, 2012

Jessie selected for cancer scholarship!

Jessie has been selected to receive a scholarship from a charity called StudentsWithCancer.org !  (facebook link is http://www.facebook.com/studentswithcancer?ref=ts ) Students with Cancer is a 501c3 charitable organization that helps support College and Graduate students in the US that are battling cancer. This scholarship is very important to Jessie because it gives her hope and something to look forward to, mainly going to college!
Any donations to this charity are greatly appreciated. No amount is too small. All you need to do is go to their website and click the donate button. www.StudentsWithCancer.org. I understand that with the hurting economy, individuals may not have the funds and resources to donate, and I truly do appreciate you taking the time to consider supporting this cause that is very dear to my heart.

Thanks everyone!


Now for the update: She is doing fine. Her counts are still at zero. I guess that means the chemo did it's job. The nutritionist tells her to eat protein which will help her body make new cells. I have been bringing lots of protein rich foods for her to eat. She doesn't much like the hospital food. She lost 10 pounds so far, but gained back .4 kg as of this morning. Maybe that means she's turning the corner! I hope she gets her immunity back fast. Everyone is getting tired of me asking them to sanitize, sanitize, sanitize!!!

Thursday, July 5, 2012

Hitting Bottom


Jessie's ANC (absolute neurtophil count) is 10 which they tell me is effectively zero. Of course she had to bottom out on the 4th of July just when her boyfriend, another friend, brother, sister and mom visit for the evening! We all took constant Purell baths. I walked around with the Purell bottle in my hand and every time someone handed Jessie something or she touched something new, I extended the Purell bottle as if to ask, "Squirt?" Hopefully we avoided any unwanted visitors. Her platelets are also low at 50. She will bobble around in this low state for a few days and then slowly, but steadily begin to rebuild and climb back up (which usually takes 2-3 weeks). They will keep her in the hospital until her ANC is above 200 for two consecutive days and all other numbers are on the rise as well.
Being a teenager in the hospital during the summertime is hard. Everyone is busy either on vacation, working a summer job, doing an internship or getting ready for college. There is only so much you can do from a room in bed. Jess got on the computer yesterday to prepare for signing up online for classes. She also hopes to be out on break in time for her July 26th orientation day at college. We'll see....

Here are Jessie and friends waiting for the DC fireworks to begin.