Hanging in There - Thursday

Jessie is a real trooper. She is hanging tough. Yesterday she received her last two doses of the chemo Cyterabine and her first dose of two of Mitozantrone. Only one more dose to go at midnight tonight! She is definitely feeling the effects. Nauseous most of the time and she still has the headache that won't seem to quit. She didn't get much sleep last night which also adds to the problem.
7pm- Jessie is tired of lying in bed. She wants to get up and move her legs, but she wants to keep her head down. We find a solution...a rolling linen basket that is the right height for her to walk but still put her head on it. It worked! She got a little stroll around the floor. The nurses weren't too happy. They were afraid that the basket was too unsteady and not sterilized. We quickly took our stroll and abandoned any thoughts of trying it again.

Wed Eve- Massage Time and AWESOME NEWS!!

Jessie said to me several weeks ago that there was only one thing she was looking forward to when she got back to the hospital... the Wednesday massage. Every Wednesday, a massage therapist comes by for one half hour to give her a massage. She LOVES it. It relaxes her so much and boy does she need that right now. Her headache has gotten a little better, but still there and worse when she gets up. We got a bedside commode because the trip to the bathroom and back was hurting so badly that it made her retch when she finally got back in bed (and yes the bathroom is in her room, not down the hall). That strategy has worked. So far today she has not been vertical long enough to cause enough pain to dry heave. She is getting lots of fluid which is supposed to help her body make more cerebral spinal fluid. They believe the cause of her headache is some leakage of this fluid that surrounds the brain. Just a small leak can cause a tremendous headache. Caffeine is also supposed to help, but the reason why it does is unclear. She has been sipping on coke taking her oral meds all day.

Now for the GRAND NEWS......the molecular test is back from the bone marrow test done on Monday morning. There are virtually NO DETECTIBLE cancer cells in her bone marrow!!  Recall that the first bone marrow check they did after chemo in Feb showed only .4 % of bad cells that were detectable. NOW she has NONE!! That means that she is responding very well to treatment and that a 4th consolidation phase (we are in phase 2 now, phase 3 in August) is not very likely to be needed. YEAH!!!! Praise the Lord.
Now we just need to make it through July and August and God willing, we will be finished. Amen. 

Roller Coaster Ride

One hour she's up and feeling great. The next she's retching and the headache is back. The doctor recommends caffeine which she has been doing when she feels she can keep it down. The other thing that seemed to help her yesterday (which preceded the singing in the shower feeling good) was a bolus of 1000 MLs of fluid. She is getting fluid now, but only 185cc per hour. Also they consider the chemo fluid as part of that. She has two more doses of the Cyterabine to go- at 3pm today and 3 am. Then she does another poison for two days. I wonder what that one is going to do. What I wouldn't do to help her feel better and take this all away.
This is Jessie and her nurse yesterday as they walk back to her room to hook her up to the IV chemo again after her shower and roaming the halls while free of all encumbrances.

Rough Night- much better morning

Jessie was up a lot last night either throwing up, going to the bathroom (a result of all the fluids pumped into her) or getting eyedrops every three hours. Unfortunately, it's going to be like this for several days and nights to come.

The doctors did their rounds today and asked Jessie if she'd like to participate. She did so they came into the room, but left the lights off for her. She still has a headache which they feel is a result of the lumbar puncture. She is getting lots of fluids and the doctor wants her to try to drink some coffee. Apparently caffeine helps, but the mechanism by which it works is unclear. I bought her a coffee last night when this was first suggested, but she didn't feel like she could keep it down. I put it in the refrigerator. This morning when the docs mentioned it again I brought it out and she was able to keep down a few sips.
Jessie did anticipate weight loss as a side effect of these hospital stays so she enjoyed all the ice cream she wanted in the previous weeks to prepare herself. 😃
Right now she is resting and doing a little bit of reading. I think she will nap throughout the day given her sleepless nights.
12:20pm- the sun is here! Her headache is gone and she is feeling much better. She is up out of bed and taking a shower. I think I even heard some singing in there! Hallelujah Amen.

Done with Arsenic- on to the inpatient Chemo

I just watched as the anesthesiologist put Jessie to sleep. She made a funny face (she can often taste whatever is put in the IV) as she closed her eyes and said she felt it working. She is having a lumbar puncture to put chemo into her spinal column (bad cells often can hide there) and also at the same time a bone marrow check which they do through the hip bone. We should get results late in the week to see how the Arsenic worked.

Meanwhile, she will be getting chemo all this week and stay inpatient most of July. The doctors say her counts should drop to zero about 5-7 days after the first dose of chemo then we have to wait for her body to recover and her ANC to come up.

This is 3/4 chemo sessions. The next one will start a week after her counts recover. So we will be doing this again in August. Hopefully, after August she will be finished with chemo. Say a prayer.

5pm- the procedures went well and only took 20 mins - waking up and being able to walk unassisted - 1.5 hours. We got into her new home away from home- room 423E. She took a nap and her headache feels better. She is getting some chemo now (a 3 hr infusion of Cyterabine twice a day for 3 day). This one causes "chemical conjunctivitis" so they are giving her eye drops every 3 hours around the clock. (not great for sleeping).
On the up side, she's got a great new room here with a view of the Washington monument!! You know what that means...we'll have a great view of the fireworks! :-)

Jessie Needs some space

Well we are at the end of week 4. Most of the days for infusions are spent in Rockville. Only Thursdays are downtown. Jessie expressed the need for some space... "Mom you won't let me do anything by myself!!£\>\€\".
So I loosened the death grip and let her go to the Rockville infusions by herself. Hence I haven't been writing as much because I'm giving room for her to start managing her own health. Wow, she is growing up fast.
I do know that the infusions are going ok. She doesn't complain much but I think she is still having hot flashes. She also felt yucky the other day. But is doing better now.
We have one week left of Arsenic then we have a one week break. Then back in the hospital for a long summer stay.

We're Baaaack! Start of 2nd week of round 2- Arsenic

The first week of round 2 flew by!! Now we are on to week 2 of the Arsenic Trioxide infusion treatments. The first week went well. However, the nurse was using the good side of the port. Just yesterday, the bad side was accessed, flushed and "heprinized". It is not used to draw blood because it still doesn't work very well. We only have to go downtown about once or twice per week now for treatments. The rest of the week we are in Rockville at the Children's Outpatient Infusion Clinic. It is much more convenient to go there! :-)  Only 3.5 weeks until our next 1 week break! Then she will be mostly inpatient at the DC Children's for the rest of the summer :-( . She is looking forward to college and trying not to think about summer.

Just last Friday night, Jessie went to her prom. She and Colin had a great time!