BEST NEWS EVER TODAY!!

We just got the lab results back from the bone marrow check done on 3/20/12. The official molecular report reads that the percent change (measured against the beginning date of 2/3/12) of leukemic cells is 99.6%!!!!
This means that the chemo treatment she just went through the whole month of Feb killed off 99.6% of all the bad cells ( at least the ones that the test can detect). This molecular test can detect 1 bad cell in 100,000. It is the best test for this type of leukemia that they have to date. The doctors were only expecting at this point about a 60% change.
Thanks for all your prayers. GOD IS GOOD!! :-)))))))))

PS. ANC is up over 4,000!!

Mar 26- First day- round 2

Soooo we were up very early this morning to drive to Children's for our first session. They accessed her port for the first time at 8am which went smoothly (Yeah!) and then we high tailed it downstairs to cardiology for a 12 lead EKG at 8:30am Then back up to hematology/oncology for treatment. it is now 1:30pm and we are still waiting to start the 2 hour long infusion. The doctors got the ok from cardiology. The medicine or should I say poison has been mixed in the approved lab. We've just been told that everyone is very busy. Luckily they had a great party here today with pizza, cake, candy, toys, face painting and superheroes. (thanks to Hope for Henry). Jessie got some awesome pictures on the White House lawn with Batman and Spiderman!! I hope she let's me post them. :-) so maybe we'll be home at 7 or 8 pm by the way this is going.....

2:48pm- just started arsenic. Seems to be going well....so far, so good. :-) should be over in 2 hours. Then home in traffic :-(

Mar 24- Getting ready for Round 2

Jessie has been sore but doing very well the last few days. Other than the fact that we learned she has an adhesive allergy! She has a rash on her neck and shoulders from the drapes that were used during surgery. She is itchy. We've been putting hydrocortisone cream on it and taking some allergy medicine to help ease the discomfort.
She hasn't been able to go back to school yet since the surgery, but is trying to get lots of work done. When the port moves inside her ribcage, it freaks her out. She had a talk with another cancer patient the other night and did some bonding.

Her next treatment starts Monday. We go down there early so an EKG can be done for a baseline reading. The next medicine she receives MAY cause some heart issues so they do an EKG EVERY Monday. Once that is read and deemed ok, she gets the IV Arsenic Trioxide. I think it takes about 2 hours. I'll have plenty of time to blog when that's happening!!

Mar 20 - Surgery

We got up dark and early this morning to come down to Children's Hospital surgery center. Jessie is getting a port placed for easy IV access and the oncology team is doing a bone marrow check at the same time when she's under. I am in the waiting room now while she's in the procedure. Mike got the other two off to school and is headed down with breakfast.
Jessie did get a little freaked out when the doctor mentioned a breathing tube. "I didn't have that last time!". I told her she would never know because she'd be asleep. The doctor said she might have a sore throat for a day or two. She is my hero. She is so brave.
Jess is losing weight. She finds it amusing that BC (before cancer) she had to work so hard to lose it and now she feels like she stuffed herself the other day and it is still coming off. At least there are some perks!

Mar 14 & 15- smooth sailing

Jess went to school for a few hours each day. She also has met with her home/hospital tutor and has been doing work each day.
I asked her if she's been tired lately and she replied, "Mom, I haven't felt this good in a long time!".
Tomorrow the plan is to go for a surgical appointment back downtown to Children's for a Port that will be put in on Monday. Also the wound care nurses want to get a look at her wound to see how it's healing. And of course- take blood to get her current counts. That's a given.

Mar 12 & 13 -Back to School!!

Mar 12 was a day at home resting. Also the home/hospital tutor came to the house and had a session with Jess.

The big day was the 13th. : her first day back for a few hours. We spoke to the counselor when we first got there. He has been super supportive. Then he asked if Jessie wanted to go to the en of her first period class. She did and I found out later that the kids clapped for her when she came into the room! It brought tears to my eyes. I am so proud of her.

Mar 11 - Busting Loose- Take 2

Her ANC tripled! That coupled with the fact that all others numbers are very good sealed the deal. She's coming home today. She texted me so excited this morning when she found out. Our plans seem to change moment by moment so this was no different. We headed down to the hospital to pick her up.
We got there and spoke with the doctor. He wants her to start back to school. I am terrified. A small virus just landed her in the hospital for a week! What is he thinking?? This is crazy talk. We talked about it on the way home and decided to try for a few hours on Wednesday to see how it goes.
When we got into her room we were faced with one last task, her daily bandage change from her wound near her old PiCC line. The special material that is used to dry up the wound got stuck in the wound. Now what ? No wound specialist there. We looked up the info from the manufacturer which said if it gets stuck, use saline to help loosen it. The nurse was using wound cleaner so we switched to saline and that worked.
Change done. Packed up. Ran out as fast as we could before they could change their minds!!!

Mar 10- No Worries

Her ANC was 50 again today but her doctor explained this is not
anything be afraid of or worried about. All signs point to the ANC coming up very soon. The monocytes (another type of white blood cell) are going like gang busters which is a precursor to the neutrophils regaining their numbers. Also her platelets and hemoglobin are fine. She only needs to stay until the ANC starts in the right direction. This is different from a few weeks ago after chemo when ALL her numbers were low. Phew! That's a relief.
No trauma today just lots of Zoo Tycoon and mom watching the Caps win against Boston!! Oh yeah!

Mar 9 - day 34/30 - still no ANC

This morning Jess was 50 which is pretty much the same as 59 - effectively 0. The raw skin near her PICC line is worse. The wound team was back today to see if the silver powder did any good. It didn't. After the 45 minutes of torture removing adhesive from raw, sore torn flesh and fascia we collectively decided to remove the PiCC line so the wound could be properly dressed and hopefully heal.
But that leaves the problem of no IV access. After the trauma she already experienced she had to face her fear of needles once again. The iV tech tried twice digging each time. I was trying to distract her. Finally I said something that made her laugh and she relaxed long enough for the tech to find a vein. It went it. Jessie isn't the kind if person to dislike anyone, but I don't think she liked that tech very much. After the tech left and it was all taped down, I got her an ice bag for her slightly swollen hand (the first attempt). The tears ran down her red face as she talked about how much she hated needles. I could see she faced yet another trauma today. I held her and kissed her fuzzy head. How I wish I could take all this away.

Mar 8 - Day 33/30 - Party Poopers

No ANC party today. This morning I called the nurse at 7:20 am after the morning drop off at school to check Jessie's morning labs. If her ANC was low my plan was to work for a few hours and go down at lunch time because I knew they would not let her go. If her ANC was higher and over 250, then I would go early expecting to bring her home.
I went to work....Jessie is staying....and probably for longer than we originally anticipated. Her ANC was 54 this morning. :-(  It needs time to build back up. There are 3 plausible reasons WHY this could be happening:
1. she just got off the ATRA which pushes cells into the bloodstream and therefore her ANC was artificially inflated while she was on it. Has the doctor ever seen a drop like this? Yes. If this is the case, it may take a week or more for it to pop back up.
2. She had a virus which pushed her ANC down.
3. She has an infection hiding that doesn't show up in blood work or cultures and the white blood cells are going to the site and are not in the count.
Truth is it is probably a combination between 1 and 2. They don't think she has any infections because she has not had a fever for over 48 hours and she looks and feels great!
It's just a bummer that she has to be here, but better safe than sorry.

Jessie said she had a massage therapist last night that specializes in lymphatic drainage. She found that particularly interesting. Now the physical therapist is here working her out doing stretching and walking. She just got off the internet with her home/hospital teacher. She did several hours of school work today. She has been waiting so patiently to play Zoo Tycoon (the complete set) which she ordered from the internet when she was at home. We got it yesterday in the mail. I teased her last night with a text saying "it's here!". She was so excited. She had so much to do today before she can play: school, physical therapy, shower then play! Is there a class that you can get credit for being a Tycoon?

Mar 7 - Day 32/30 - That Pesky ANC

Sooooooooooooo, did I fail to mention yesterday that her ANC (the number that tells us how much protection she has against infection) dropped from 1450 to 341. Mistake, right? Nurse didn't draw off 10 ccs first. Maybe the lab goofed. It happens. We thought it was a mistake too. So they drew more blood and retested in the afternoon. Nope. It was correct. This morning it had dropped to 210. I was still holding on to some small fantasy that they were going to consider letting her come home today. Nope. I was wrong. Combined with the fact that she had a fever on Sunday and a dropping count, they want to wait until her counts start rising before they let her go. They said she needs at least a 250 to come home tomorrow and no fever of course. 
We think she caught a virus in the 48 hours she was at home. Maybe it was my fault taking her to CVS after the doctor visit to get that one last prescription? Maybe it was the handles on the Dr. Scholl foot assessment machine where she got a virus? I woke up at 5 am and started thinking of all the different places she could have gotten it. I decided I need to put her in a bubble. We'll call her Bubba or bubble girl.
So there she sits at Children's hospital procrastinating like usual with her homework assignments (some things haven't changed :-)) looking like a bald million dollar bucks, but still she sits. She is exercising her legs and walking and stretching and showering and brushing. One good thing: her platelets are going up so we had a platelet party with a $2.99 ice cream bar from the "cafe" on the 7th floor.
Hopefully tomorrow we'll have an ANC party....

Mar 6 - Day 31/30?? Who wrote this protocol?

I woke thinking how great it was going to be today bringing her home. I got the other kids to school and was eating breakfast when I got a text "I was fever free until now". Bummer. Doesn't even begin to describe my disappointment. I knew they wouldn't be letting her go home today. I sucked it up and texted back something about what to bring her today.
The doctors came in Jessie's room for rounds today. They were pleased that she responded well to Tylenol this morning and if she stays fever free through tomorrow morning, she will be express released. I guess that's like the express checkout aisle at the grocery store. Then I found out later from the nurse that they are all full and kids are waiting in the clinic for a bed on the unit. Wow. Whose running a sale on cancer? Sorry Mary. No room in the inn.
So hopefully she's coming home tomorrow morning. We had an appointment next Tuesday for a bone marrow check. Those results will determine when she can "see real people" as she puts it. I call it going to school. :-)

Leg pain is getting better with each walk and each stretch. She had some skin break down with the sutures and skin near the PICC line. The wound care specialists and a nurse Practitioner came in and changed it from sutures to a stat lock and put some silver powder (yes it really has actual silver in it- apparently a healing agent) on it and a new dressing. That was the excitement for the morning. Besides the chicken that Mike sacrificed to make Jessie's rash on her legs magically disappear. He told her he was sorry for the mess it made in her room at home, but he would just throw some more clothes on top of it. His (and hers) warped sense of humor.

Mar 5 - Standing Still Hurts...Day 30/30

Today is the day the "Induction" period is supposed to be officially over. Jessie slept most all of yesterday and had a fever off and on: mostly on. Today has been much better. Her last fever was at 2 am this morning. A physical therapist came by to teach Jessie some exercises to help her legs and arms which she has been doing religiously. She also taught her how to "prepare" her legs to be ready to stand up so they won't hurt so much. We also have done several laps walking around the unit. The nurses all get a chuckle because she can't stop and stand still. She has to keep moving or the pain gets worse. She keeps going or kicks from side to side if she needs to be in one place. But at least she is not in tears anymore. :-) The docs don't really know where the leg pain is coming from. It could be several things. The most likely thing is probably the ATRA medicine which she needs to take to get rid of the protein on the outside of the bad cells. One of it's side effects is muscle pain.  Another theory is muscle deterioration and/or tightning due to being in bed so much for the past month.
They disconnected the IV fluids to see how she does without them. She is back to drinking 5-6 20 oz bottles of water (mixed in with Gatorade) a day. I will go home tonight to see my other offspring and my husband (who is that guy?). He has been doing a great job holding down the fort and getting projects done around the house. Good job honey :-). Maybe tomorrow will be another launch homeward bound. I hope.

Mar 4th- Back to Childrens Hospital

At 8pm Saturday night, Jessie came upstairs from watching a movie in the basement. I noticed she was shivering while eating some soup. "Oh I'm fine. I was just cuddling with Colin under a blanket and now I'm a little chilly". I took her temperature- a low grade fever. I waited an hour and took it again (this is probably the first time I've followed instructions by the book). A little higher, but still a low grade fever. I spoke with the on call doctor. She and I agreed to wait 1/2 hour, take it again and see what it was. If it's still a fever, then we come down.
We started down at 9:35pm. We had to go through the ER to get assessed. At the triage, she didn't have a fever!? But when they took it an hour later, after laying down on the stretcher bed in the ER it was starting up again. Maybe the answer is sitting up all the time.?!?
Anyway, we finally got a room at 1:30am back upstairs right next door to where we were before.
I was so tired I could barely keep my eyes open while the nurses assessed her and hooked her up to the IV.
A new symptom has emerged. Her legs and arms get very painful (like a blood pressure cuff that won't quit) when she puts weight on them (legs) or holds them too long in a certain position (Arms).
It got so bad when they took a blood pressure or stood her up to take her weight, tears came down her eyes and an obvious wincing on her face.
Cancer sucks.

Mar 2&3- Two Blissful days at home...

Jess had two great nights at home in her own bed. She had a busy day on Friday. The home care nurse came out to the house on Friday to teach us how to clean and flush her PiCC line. Before that we had an appt at the children's outreach at Shady Grove to check her platelets and counts. In the afternoon, her home/hospital tutor came for a few hours to do school work. They read a long poem out loud and he really got Jessie to come out of her shell. By the end, she was reading to him with such feeling and gusto! I couldn't believe my ears. :-). Her boyfriend also came over that night and they sat quietly on the couch watching a movie together. Saturday was a more relaxing day. She was tired and slept until after 2pm, only waking at intervals to take her parade of pills.

Mar 1 - Busting Loose!

The doctors checked Jessie today. Her ANC is up over 800. They said she was progressing nicely and they are going to discharge her!! Yeah!! Of course they want us to get a blood count tomorrow morning at the outreach Children's in Shady Grove and a platelet count. If she needs them, she can get them there. We will come back next week to see the main doctor who is in charge of her care. At that visit he will determine when she can go back to school. One step at a time....