After Thanksgiving 2012

Hi Everyone,
Hope you had a wonderful Thanksgiving! Jessie has had two check ups (with lab work only) so far at Children's Hospital, one in October and November. Her first bone marrow check will be in December right after she finishes her first semester of college! So far, so good.
Interestingly enough the doctors base the level of oral chemo medicine on her ANC level. Right now it is a bit too high which means they may need to increase her dosage on the next round. Her ANC is in the 2000 range (good, right?) That's what we wanted before! Now they want it to be 750-1500 and if she gets a virus it mostly likely will dip low like it did when she first entered college. So for now we have a reprieve. She is doing very well and is enjoying her freshman year.
This is Jessie getting checked out by her oncologist Dr Schore and Melissa Wills, nurse practitioner.

Oral Chemotherapy Medications and Cycles

Jessie has been on two new oral chemotherapy medications for almost a month now plus the ATRA for the first 14 days of this cycle.  I am told by the oncologist, Dr. Schore at Children's that she will have 9 cycles of oral medicines, each cycle lasts 84 days. I'm not sure how much time in between, so if you do the math just counting her time in each cycle that is a little over 2 years of oral chemo medicine. Each month she gets an examine by the oncology doctor and nurse practitioner and gets her blood work done. Every third visit she gets the added bonus of having a bone marrow check done. Those will be the fun visits deciding whether to let her drive back to college afterwards. I'm not sure about that one!

Jessie said that the medicine at first was zapping all her energy. I was glad to hear last week that she is starting to get her energy back. She has her first "visit" tomorrow at Children's and I am going to meet her down there for that. I think it will feel odd not having gone down there for a while after SO many visits over the last 8 months. I will post again letting you know how everything goes tomorrow!!
Caio for now.

Update: all went well at the appt. her numbers are all good. Jessie is a little nauseous at times from these medicines and spoke to the doctor about tweaking the anti-nausea medicine.

Immunity Returns!

Yeah! Jessie's blood work this week shows that her immunity has come up and she is ready to start her oral chemotherapy pills.
Her ANC is up to 1318 and her platelets are up to 113. Her hemoglobin is holding steady at 9.1 since her blood transfusions 2 weeks ago. Wow. Time flies. Feels like yesterday when I met her at Children's and she got the transfusions.
More good news - her college is so great. The nurse practitioner, Lee couldn't reach her by phone one day last week and was so concerned she looked up Jessie's schedule and sent someone to do a "well check" on her! What service! You don't get that at a big school. I'm so glad she is at St Mary's. They are taking great care of her. I feel like I have someone who really cares about her welfare and is my eyes and ears down there. Thank you Lee!
So tomorrow Jessie will start her oral meds and hopefully things will go a little smoother from now on.
I'll let you know! :-)

Blood work is back

The labs are back and show that Jessie still doesn't have much of an immune system right now. She is having a delayed reaction to the last chemo she received in the hospital. Her counts are dropping.
The good news is they may have bottomed out. There are signs in her blood work (monocytes in particular ) that are rising which is a precursor to her neutrophils rising. This should be an indication that her immune system will be coming back shortly.
Until then we pray that she doesn't get a fever. If she does get a fever and her counts are low, she will need to be admitted back into Children's hospital until she gets better.
I have one word for Jessie, "purell"!!

Back at School- Say a Prayer

Jessie ended up staying home for an extended weekend (from after the transfusions on Thursday night through Sunday night). She got in her car to leave and couldn't get it started!

After 20 mins of trying, we finally got it started, but I couldn't send her in a car that I wasn't sure would start when she needed it. So I gave her my car to drive back to school and I kept her car (I think she got the better deal!)

We dropped her car off to be checked out on Monday night. Still waiting to hear what they think is wrong.

Meanwhile, Jessie got her blood drawn today. We should get the results back tomorrow to see how her platelets are doing.

She was having some petechiae bruising (develops when the lining of small blood vessels is damaged, allowing blood cells to escape into the skin and tissue. It usually looks like freckles or tiny red dots) on her neck, ears and under her eyes.

Just When I Thought I Could Breathe

Good news is Jessie's molecular bone marrow test has come back for the third time- negative for leukemia cells.

Not so good news is that her counts are dropping at college. She had blood work done yesterday just before she was supposed to start her 3 oral chemo meds.

Doctors say there could be many reasons why this is happening. The three most likely reasons are:
1. A delayed reaction to her last IV chemotherapy
2. A blood clot in the tube which would skew the results
3. A virus.

Docs say they are NOT worried about this being leukemia because they have such great results from bone marrow tests.

Long story short - they want to see her tomorrow for an exam and for more blood work and they will decide where to go from here.

Stay tuned...

9pm- so the doctor said it is most likely a delayed response to her last IV chemo which she had in late July. He said we need to keep supporting her body until it has a chance to recover.
Meanwhile she just has to be super cautious not to catch anything. If she does and gets a fever with low counts then she will be admitted back into Children's hospital. However, if she gets a fever and her counts are not low then she can probably just get IV antibiotics ad not be admitted.

She got two bags of blood tonight. Luckily they had both of them there already at the hospital. The reason she is so hard to match is that she has what is called anti-Jka antibody in addition to being O- . Apparently there are many more blood types than the ones we all learned about in school! Now they tell me! The nurses talked her into coming home tonight instead of driving 2 hours back to school. Hopefully she will get some rest.

Beautiful girl, beautiful place

Today we took our first born and dropped her off at college. Normally, I think I would be fine with it, but this is slightly different since she just had surgery two days ago. Am I just fooling myself? I think I'm doing pretty well considering...only a few tears shed and only after we left her. Sara, my next one said, "You better cry when I go to college!"  I will Sara, I will.

This is the view from the common area in her dorm building!

Take 2

Jessie's bone marrow had not recovered enough by last Friday from the last chemo so they could not do the bone marrow biopsy or the lumbar puncture that day. Today we are going to try again. Also they have scheduled the port removal for today so hopefully it will all be done in one shot!
We are waiting to do her labs right now to see if she "qualifies" for 2/3 of the procedures today. Say a prayer that she passes.

12:30pm- port out - now doing bone marrow and LP.
4pm- all successful and coming home.

Independence Day@!!!! Almost.... Blood shortage

We were told earlier today that Jessie would be discharged today, but since her hemoglobin has been running in the 7 range they wanted to give her a transfusionn first before she goes home.
Seems kind of weird, I know. Now the nurse just told us that the blood bank says there will be a delay in the transfusion. It has been on order since noon today, but Jessie is O- and rH- and needs certain antigens in the blood. The nurse said that the blood bank is calling around to local places to try to find the right blood for her. They said it might be very late tonight by the time she is finished getting it so she might have to stay one more night. Hang in there Jessie. Just a little bit longer.....

Mixed Emotions and more GREAT NEWS!

The past week has been relatively quiet. Nausea is getting less and less. Interestingly, her ANC has not fallen very far this time as in the past. Today her ANC was 1640. With this number, she should be home. I asked the doctor today if it stays up, when can we expect to get her home? He said we need to see how she does later this week. He thinks it still might fall some more.
Jess was put on a dairy free diet today. For some reason, her phosphorus is too high. I don't know the cellular reasoning behind it yet, but I did ask. They are watching all aspects closely.
My feelings were hurt a few days ago when she told me that she needed some space. She didn't want me to come every day anymore. I do realize that this is a good thing. It just didn't feel so good then :-). I know that it means she is feeling better, taking charge of her own medical care, growing up, taking responsibility, etc... but when your child is sick, a mother wants to be there. I think she is preparing me for the end of August when she leaves for college. It won't be as hard if I'm not seeing her everyday. At least, that's my theory!!

GREAT NEWS- the bone marrow biopsy came back from the last check done on July 27 again negative for any leukemia cells! The doctor mentioned it in passing (and frankly I wasn't sure what test he was talking about because he used acronyms). It wasn't until later in the day that I figured it out. He said it came back negative which was expected after the last negative, but it was good to have it on file.

When Jessie does get out after this inpatient stay, she will have to return once a month for blood work and then every three months for bone marrow biopsies. These are outpatient procedures so hopefully NO MORE LONG HOSPITAL STAYS!! This will continue for 4 years. Yes, I said FOUR years. Dr. Schore said that this type of cancer rarely comes back, but if it does we want to catch it early with the bone marrow biopsy. I told the doctor that he will follow Jessie all the way through her college career!! Wow. It's a good thing St. Mary's allows freshman to have cars!
Looks like I'll have my life back after this seven month nightmare. Thanks to all the people who made life a little easier during this trial. Special thanks to Dr. Reuven Schore, Melissa Wills and all the nurses on the 4th floor at Children's.

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!!

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.

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!

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!!

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!!

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!!

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!

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!!!

Hitting Bottom

Sara having fun in the hallways....

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.

After the Storm...

Well how fitting! Jessie seems to be in a calm after her storm too. It was interesting traveling down here today...lots of logs and branches on the side of 495 ~! Lots of places closed until I hit the DC line. I saw this diner that was packed full of people probably mostly from Chevy Chase area because their power is out.
Anyway, Jessie is sitting up today! Something she hasn't been able to do for several days because of her headache. Things are looking up! All her numbers are falling as expected. She is getting slightly dizzy like she did last time when her hemoglobin falls below 8.0. She said if it continues at this rate she will probably need a transfusion tomorrow. Hopefully this time there will be no infection. That was the worst- so scary with no immunity.

TGIF!!

Happy Friday everyone! Jessie had a much better night sleep and woke up feeling somewhat better. Still has the headache problem when she stands up straight.
She did make it down the hall doubled over (due to her head) to watch a Harry Potter movie. She was there for a short while lying down on the couch when she was interrupted by the smells of the cart. She almost lost her cookies! But since she hasn't been eating, there are no cookies to be lost. Poor thing.
She seems to be feeling well enough for me to go home for a night so I'm off, but before I go she wants some ice cream for dinner! I brought some ice cream in a day or so ago for when she was feeling up to it. She loves coffee ice cream and one of the nurses suggested Edy's Expresso Chip. So I got it. She likes it!!

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!

Yeah! It's Break week 1!!

This week Jessie is totally normal, almost. Only a port under her skin and short short hair. No needles, no arsenic streaming into her veins, no blood draws, no EKGS, no skipping her favorite part of the day (after school with her friends). She is on a break. This is week 1 of 2 of this break. So adios amigos! I'll be back in a few weeks!!! :-) Mama gets a break too.

End of week 5 - Jury Still out about the sluggish line

Well, the one side of the port still seems sluggish. The nurse can't get blood from it hardly at all, but the line did flush. So they put the heparin in it and started week 5 on the good side which did well all week.
We will know more in a few weeks when we access that slow side again to see how it's going.

Middle of Week 4 - Sluggish line

Jessie has a double lumen port which means there are basically two different lines to access her veins. One of them has had some constant resistance when the nurse flushes it at the end with heprin. When Jessie said that she could feel it in her neck the other day during the flush, the nurse checked with the doctor and they decided to do a dye xray the next day to make sure the line was still in the right place.
Long story short, it's in the right place, but they think it may have some "gunk" in the line. They decided to try a medicine called TPA (a clot busting drug) to clean out the line. They put it in the line last night before we left and are going to draw it out today when we go back. Keep your fingers crossed!

Since the. Arsenic treatments started Jessie has been having several hot flashes per day and feeling a but sluggish herself. Welcome to my world!! Poor thing. That stinks at 18, but she never complains. What a trooper.

April 9th- Start of 3rd Week of Arsenic - Many Thanks to All

Today is Monday and wow what a change for the better! Since Jessie is doing so well with the Arsenic treatments the docs decided to let us do a few visits in Rockville at the Children's Outpatient Building (which is 5 mins from our house). I know they had to jump through many hoops to get this place on the "approved" list in the clinical trial, but it was so worth it! Instead of our normal 9 hour marathon Mondays, we came in this morning to do the EKG at 8:30am. It was done, read and OK'ed by 9am. The nurse took vitals and accessed the port back in an exam room. The drew the blood she needed and sent it down to the lab to get the CBC done. Results came back by 9:50am- all is well. "Come back in 2 hours for the infusion", nurse said. She called Children's Hospital downtown to order the medicine and have it couriered to the Rockville location. We got to go home and get things done for 2 hours, then come back for the infusion. We should be home by 2:30 pm or so and still have the rest of the day!! There are still a few days where we will have to go downtown, but hopefully not 5 days per week.

THANKS TO EVERYONE
I just wanted to say a great, big THANKS to everyone for all the help we have received like countless delicious meals delivered, itunes and other gift cards (and an IPad2!) for Jessie to keep her occupied, earrings, bracelets, books, "cancer blows" tshirts, rides for Sara and Drew to various activities, Costco runs, rides for Jessie's friends to visit her in the hospital, offers to do chores around the house no matter how small, encouraging comments on FB and this blog, prayers, emails, cards, laughs, etc... You have made this journey bearable and sometimes even enjoyable! I know we have a ways to go, but I wanted to thank you from the bottom of my heart for all you've done already. :-) Like Tiny Tim says, "God bless you all, each and every one!"

April 2 - 2nd week of Arsenic Infusions

As far as Jessie's body goes, she is handling the Arsenic Trioxide infusions very well. The only problem has mainly been that it takes a LONG time. It is a minimum of 5 hours from door to door. It just doesn't seem to be possible to go any faster. Especially on Mondays. Today went much like last Monday....up at 7 am, leave by 7:15am. Get to the hospital by 8:20am and to cardiology clinic by 8:30am. Wait, wait, wait until they call your name. No one else is in the waiting room that early. Why does it take 30 minutes when no one else is there? Who knows. 9-9:05am: 12 lead EKG done. We trek back up to Hematology/Oncology clinic where we sit and wait. At least there are other patients there that were ahead of you so you feel a little justified waiting. 9:30-9:45am- they call your name. You go back, get vitals done and get a "pod" for the infusion. 10:30am nurse comes in to take blood. 11am-EKG has been read 2 hours later. It's OK for another week of treatment. Not much happens for a few hours. Occasionally you see a nurse who says, "We are still waiting to hear about the labs". Finally about 12:30pm they get the OK from the lab that the magnesium level is good. Nurse says, "Now the lab will mix the medicine". A few hours later, nurse appears with the fluid. Infusion starts about 2:30pm and is supposed to take 2 hours with a 20 min flush after. Somehow the lab doesn't subtract fluid from the bag before the insert the medicine so a 2 hour infusion becomes a 2.5 hour infusion. Then a 20 min flush. It's 5:20pm by the time the infusion is finished. By the time you jump in the car and get home it's about 6:30 or 7pm. Whew!
All other days it about 2.5 hours of round trip travel time and 2.5 hours of infusion. I'm trying to avoid wait time at any point during our visit because it just adds to this marathon. Jessie has been such a trooper keeping me calm when it gets so frustrating waiting. Mike took her today to give me a break and he experienced the fun today. He texted me that Jessie was taking this like a pro and he was so very proud of her and amazed at her strength. Way to go, Jessie. Momma is proud of you, too!

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....

Feb 29th -Shaving day

Jessie decided to take the bull by the horns and just have her head shaved. She talked it over with a few people and decided to take control over this instead of being devastated every morning when she wakes up with more and more hair in her bed. Our lovely hair dresser Bianca came to the hospital to help us. Thank you B. It's done and I must say she looks beautiful. I haven't seen that head for about 16 years, but I loved it then and I love it now! She is wearing a soft stretchy cap from my friend Teresa who has been through this already. Thank you Teresa. She said it keeps you warm when you sleep at night and it's easy to get on.
The doctors are trying to see if they can get Jessie home before this weekend. The only thing that's keeping her here is that she needs platelets and sometimes blood. If they can get her to a point where she can go a few days without needing platelets, then we can get her home. The other problem which is contributing to the platelet and blood issue is that she is on a marathon period- 10 days and counting now. Once they get that to stop things will get better faster.

Feb 26/27/28 - three steps forward, one step back

Jess has been doing well. She is still in the hospital. They are talking about trying to get her home before the weekend. They took her off one antibiotic and she had a low grade fever for an hour the other night. That next day her counts also went down for the first time since they started up. It was a little discouraging. She has been losing some hair steadily. Lots of it in her bed. She doesn't like constantly picking hair out of her bed. She still has more hair than most people. For those who know Jessie, you know she has lots and lots of hair.

Feb 24/25 - Day 20&21/30- Positive Outlook

Much of the same both these days. Her counts continue to come up. Her ANC is now 250....higher than it has probably been for a while!!! She continues to be force fed hospital food unless we bring her real food :-).She has been able to do some school work with her home/hospital teacher via online.
She is up and about today. She seems very uplifted. The doctors are talking possibly late next week for her departure of this wonderful place. They want to make sure her skin is totally healed before she leaves because the skin is the largest protective organ of your body.
The doctor faxed 7 prescriptions over to our local pharmacy to have available when Jessie gets home! (and she was looking forward to not having to take medicine at home).  They have also connected us with a home care company who will supply us with bandages and dressings for her PICC line and a nurse to change it when necessary.
I had this fantasy that she would be able to jump right back into a full 7-8 hour day when she was released. I've come to realize that she will have to take this one day at a time and slowly work her way back into a modified school routine. Reality is setting in. We are in this for the long haul and it will get better one day at a time. :-)

Feb 23 - Day 19/30 School what???

Yea! She felt well enough to do some school work today. Also, her friend Amos is picking up a packet from school for 3 subjects. Got to start working on catching up when she feels good. :-)
They are increasing one of her antibiotics to make sure that she is covered for skin infections especially. Her ANC is up to 170! Great news- see bolded explanation of ANC from yesterday.
Her white blood cells are also up to 790. Everything seems to be coming up slow, but sure. Slow and steady wins the race!
The docs and nutritionist are threatening Jessie with an appetite stimulant. She doesn't want it so she is eating what she can. I brought her a Tasty Turkey on a cheese bagel for lunch. She ate 1/2 of it. She also ate 1/2 of a spinach veggie wrap that the made especially for her down in the cafeteria. Her stomach turns when she smells the hot food on the food cart in the hallway at each meal time. Nothing smells good then.

Feb 22 -- Day 18/30 - Jessie the Vampire

"I vaannt your blood". Jessie got 2 more bags of blood last night which upped her hemoglobin (the cells that carry oxygen to everything). No more headaches or dizziness while resting in bed- apparently she's getting enough O2 to her brain now- YEAH! We need to keep those brain cells working for college!! She also got another big bag of platelets which help to prevent bleeding. She was having some break thru bleeding yesterday (girls, you know what I mean) which still continues albeit light. She was also having a small amount of bleeding in her nose which was clogging her one nostril until extracted. She feels better.
The docs feel like they discovered the cause of her infection. It's a small skin irritation. They said that some bacteria entered the skin and caused lots of problems- mostly misery that wouldn't quit for 2 days.

Her ANC (absolute Neutrophil Count) has risen since yesterday from 56 to 120. The normal range for an ANC is 1,500 to 8,000/mm3.  You poor people are getting educated right along with me! :-)
From a cancer site:
"Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature."  Incidentally, when she entered the hospital, her ANC was 280 which is why she was getting sick all the time catching germs a normal body would be able to fight off.

Feb 21 Day 17/30- Fever gone

Well, she has been fever free for 36 hours now. She still doesn't feel like eating. Yesterday when I was pushing the Boost drink, she drank it, but then threw it up an hour later.  She has been getting terrible headaches. She got oxycodone yesterday evening which helped the pain (Tylenol was cutting the mustard) but then she said she was wide awake and feeling funny. She didn't like it at all.  They think the headaches are due to her low hemoglobin (7.7) . Nurse is mentioning that if she is symptomatic (ie headache, tired, pale) that they would consider another blood transfusion. I'm definitely nervous about this because her last fever started around the time of the blood transfusion and it seems like we just got it under control.  We'll see what they decide.
Jessie has been feeling dizzy off and on. This could also be due to low hemoglobin. Of course. 

Jessie has decided to give up anthracyclines (the chemo poison that kicks her butt) for lent tomorrow. I don't know what I'm giving up yet.

Feb 20 - Day 16/30 - Half way there!!!!

I think the antibiotics are kicking butt! Last night after her shower, we took a victory lap around the halls of the unit. Every time I saw someone in the hallway, from nurse to janitor to bed linen man, I raised my arms to the sky with fists squeezed tight like Rocky at the top of the stairs and said, "It's alive! She's up!!"
She stayed afebrile all night long. So far this morning she is also fever free. We are just talking, laughing and waiting to see if she gets feverish today. I'll be back later...

Feb 19 Day 15/30 - Fever is vulnerable to antibiotics..

Docs are not sure that this is a chemo fever. They are looking for signs of infection, but haven't found anything definitive yet. Last night Jessie's fever bounced around from 101-102.6 depending on her Tylenol level. This morning after her Tylenol, her fever came down until her temperature was normal! As soon as the Tylenol wore off, her temperature started on the rise again, but didn't seem to go as high as last night. I am hopefully that whatever infection she has is susceptible to the antibiotics. She sat up this morning while feeling better and ate 1/2 a bagel. I forced fed her a few bites of the "scanty" shake which was ordered by the nutritionist. It is a sweet vanilla ice cream shake with extra calories, vitamins, minerals and protein. She said it was too sweet and had a funny after taste. I had to bribe her with Dr. Pepper, seeing Colin tomorrow, etc... to get her to eat a few bites. It's been a long time since I've had to play open the hanger and let the airplane in!!!

Her platelets were down to 13 last night so they gave her the max dose of platelets IV that just finished. They still have her on all four antibiotics, the anti-fungal and the zantac. Feels like we are moving in the right direction today.

8pm- update: fever came back all day today from 10am-7pm even with Tylenol every four hours. For some reason after the 6 pm dose of Tylenol, her fever came down, she drank 1/2 of her frozen mango smoothie from the other day and is now even taking a shower! Earlier she could barely get out of bed. This is crazy.
Hope the good times come for longer!!

 Thanks to everyone for prayers and support!!

Feb 18 - Day 14/30 - Tough Times

Neutropenic:  is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells (WBCs) produced in the bone marrow that ingest bacteria.

Jessie had a blood transfusion last night to bring up her hemoglobin which it did from 7.5 to 9.7.  However, she now has a fever of 101. It started right around the time of the transfusion so they did a transfusion workup which will tell us in a few days if she had a reaction to the blood. They also ordered blood and stool cultures which have come back negative. They have her on Tylenol to control the fever and 4 different antibiotics, one anti-fungal and zantac to help her stomach.
I think we jinxed ourselves the other day when Jessie told me it hadn't been too tough. She's mostly sleeping now, has a headache: is sensitive to light and noise. Fever holding steady at 100.9 degrees F.  If ever you have thought of saying a prayer, say it now please for Jess.

 Bottom left is a picture from a few days ago when she was feeling a bit sassy! To the right is her graduation picture which was taken in July when she was tan from life guarding. :-)

She is still having a fever  which seems to start up when she is due for the Tylenol and comes down a little when she is on it. She is shivering now. Temp is 102.6. Tylenol is coming. Everything seems to be checking out ok. Right now, they are calling it a chemo fever which is another way of saying her body does not like getting the chemo!! Her body is reacting to this poison. Leave poison, leave!! 8:20pm

Feb 17- Day 13/30 - Ultra Sound and Champion Pill Swallower

Jessie has been NPO since midnight. Her ultra sound was supposed to be around 8 am, but of course didn't happen until 10:30am. She almost fainted in the bathroom this morning before I got there. She pulled that red cord after lowering herself to the floor. Thank goodness she knows what it feels like to be faint and got herself to a safe position. She was getting an ultra sound because she has been having abdominal pain. I think they were checking for bleeding. Everything checked out OK. We had a nice chat with the ultra sound technician, Kathy. She has a different type of Leukemia, not curable, but she can go into remission. Kathy and I decided that all the medicines that Jessie has been taking orally (ATRA, antibiotics, anti-fungal, zofran, xanax, etc....) have caused her intestinal tract rebellion. Her clotting factors have all returned to normal so it seems that the bleeding risk is greatly reduced. However, her hemoglobin has been hovering around 7.5 for six days now so they have decided to give her blood today. It will make her feel better and hopefully last until her body builds itself back up.
Every time she eats, her stomach hurts, but she tries to eat a little something before each set of pills she has to take. Before two weeks ago, she was NOT a good pill swallower. Now she's a champ.
She is down the hallway now with Colin in the playroom petting dogs! Everyone was invited on the unit. The dogs and handlers come every couple of weeks with special dogs (apparently the dogs needs to lie around a lot and like to be pet). Hey, I have a dog like that! At least she's up out of bed and enjoying herself! :-)

Feb 16 - Day 12/30 - Light Pink

Her cheeks look light pink to me today. That was my first thought as I walked into her room after an hour of traffic getting her. All the tension melted away. I knew she wasn't feeling well this morning because she canceled her home/hospital schooling today at 11am. I was worried all day until I got here. She was very pale yesterday and it crossed my mind that she looked sick. Yesterday her WBC was 670. Today her white blood cell count is 430. You and I are between 5000-15000. Of course she looks pale!  She spent most of the day resting and reading. I put up all her Valentine cards on the wall. I asked her if she ever turns on the TV....just for some noise. She says she doesn't like noise. It is very quiet in here. Mike and Jessie are both reading. I am typing. The only sound is the occasional loud continuous beep from the IV machine. Either "infusion complete" or "air in the IV line". That's not good :-(  . A whole lot of nuthin' going on here, but nuthin' is good for now.
Looks like I spoke a little too soon...they are going to do an ultrasound first thing in the morning because she had stomach pain this morning. No eating after midnight...no snacking Jessie.

Feb 15 - Day 11/30 - Belated Valentine's Day!

Wow! This was quite a day for Jessie. It started off with reading 20+ Valentine cards from Ms Sydnor's fourth grade class. They are a very creative bunch. One of them even sent her a scrambled letter puzzle that was made especially for her. The hardest word to figure out ended up being "Jessie"! Then she started her home/hospital session online with an instructor who is teaching her AP psychology and honors English. It was interrupted for 10 minutes or so for an exam by the doctors. After that, she was in the middle of eating a veg-out sandwich from Einstein bagel when a special delivery came. It was the child life specialist with a gift from the Hope for Henry Foundation. Her eyes opened wide and a huge smile came across her face. It was an ipad2 which has FaceTime. This will enable her to connect with her classes at PHS. The school decided due to liability issues that they couldn't initiate video streaming. So they have asked if any kids had unlimited data plans and FaceTime so we could connect. The counselor at school was getting a list together today of all the volunteers. She is so excited. I kissed her on the head when I had to go. Her counts are extremely low today so I'm hoping that they will begin to come up soon.

Feb 14- Day 10/30 - Singing Karaoke!

Mike went to the hospital today. I was at home working and doing real estate. When Mike got there this morning, Jessie was hungry and ate some cereal. We found out that her vitamin D level was within normal limits so they decided not to give additional vitamin D because it could interact with the ATRA (retinol A) to create a problem in the kidneys. The nurse cut back her fluids and told Jessie that she needed to drink more to flush her system. The overly bubbly activities girl with the nose ring convinced Jessie to attend karaoke from 2-4 pm in the lounge and to our surprise, she went!!! Jessie sang with one of the nurses and was praised by several other patients and nurses!! Mike missed the whole thing because he was dealing with the home/hospital education tutor who was very enthusiastic about teaching Jessie and got her set up online tutoring which starts tomorrow. Still feeling well, she ate her 1/2 sandwich from yesterday from Panera. Dear dad microwaved her mango smoothie because it was rock solid in the freezer so she could enjoy it. I will be back tomorrow...

Feb 13 - Day 9/30- She's hungry!

It's always a good sign when your kids are hungry after being sick, right? I made the mistake of letting Jessie go over board and eat a whole Panera sandwich yesterday. Her eyes were so big and it tasted soooo good going down, not so good coming back up hours later. :-(  But she hasn't given up. This morning she texted me to ask for a bowl and some milk. I brought her a soup bowl from Einstein's and the nurse brought her some milk. We have had her favorite cereal (Raisin Bran Crunch) in her room (courtesy of Gram and DaddyTom) since day one waiting for that special moment. When I got here this morning at 10:30ish, she was reading in bed and happy to see the bowl. She poured herself a small amount of cereal with milk and enjoyed every bite. So far, so good. She did say 30 mins after that her stomach is unsettled. Hopefully it will stay down. Stay tuned....
4:30pm- It did stay down. She also had a half of a sandwich for lunch plus an apple and a fruit smoothie (her favorite). She seems to be holding steady. The nurse changed her PICC line dressing today as I watched. Then she brought me a manikin arm and bandages for me to practice on.  The big doc came in today. I mentioned that Jessie would really like to be able to go to her senior beach week if possible. He said the schedule is fairly set in stone and can let us know which two weeks she is scheduled to be off between rounds 2 and 3. We're working it for you Jess!!

Feb 12 - Day 8/30

Colin and I were driving down to the hospital today and found a Panera Bread close by. Since a Panera bagette is the ONLY thing Jessie has wanted to eat the past few days, we called her to see if she wanted one. "You want a sandwich?!!?"  Yeah! Amazing. She wants a sandwich!! She ate the whole thing. :-) I never thought I would be so happy to see anyone eat a sandwich. When we got there, she was out of bed and sitting in her lounge chair. This is a day of firsts. Colin is checking the bus schedule so he can stay later. I am leaving late afternoon today.  The nurse explained that her immunity will continue to go down and bottom out 7-10 days after the last chemo treatment. She is still getting anti-nausea medicines every 3 hours. I can see that she will be getting bored this week if she continues to feel better. Hopefully the school webcams will be set up soon and working so she can view her classes when she feels up to it.

Feb 11 - Day 7/30- Last Chemo Day and Long Term Plan

Today Jessie had her last dose of chemo for this round 1. It only takes 15 minutes for the poison to enter and much longer for it to leave. The doctors say Jessie is doing very well. We found out yesterday evening when the doctor was running through her "numbers" that the "blast" (which are the leukemia cells) are down to 4% in her bloodstream. They started at 15% last week when we first got here. This is good news!! Her body is responding just as it should. Now we wait for her body to recover as the white blood count comes up. They expect this process to take 2.5-3 weeks. She needs time to feel better and for her body to get stronger for the next round. Meanwhile, she has been watching lots of movies with Colin on a tablet. Round 2 will be approximately 3 months of outpatient hospital visits. She will have to go for treatments for 2 hours every day (5 days/week)  for 10 of the 12 weeks. Then she will be re-admitted to the hospital for a month during the summer to go through another round of inpatient treatment. If all goes well she will go off to college in August cured. Amen.

Feb 10- Day 6/30- First Night Alone

My baby spent her first night alone last night. Mike and I got to the hospital about 11:30 am to greet her. She was quietly reading her nook. Mike asked, "So how did you sleep without Mom and I snoring all night?". She said, "Pretty well, actually. I kind of liked it". She looks good today: sitting up, facebooking on her computer, texting friends. She looked at her phone. "Oh, lunch is over at school". She doesn't look sick. She is drinking fluids, but still doesn't feel like eating. The thought of food makes her cringe. She got her first dose of miralax at noon to help things get moving. Jess says that the alternating nausea medicines that are being given every three hours are really working. They keep her from really feeling sick and wanting to throw up. She is only slightly nauseous.
Colin, Missy and Laura are coming to the hospital tonight and Jessie is really looking forward to seeing them.  Oh course she is texting them worrying about the logistics of how they will get home.
I've been talking to the school IT people to try to get sykpe set up so that maybe she can "attend" some of her classes online. She would really like that and it would help to pass the time.

These are two of her pink sponge sticks that she now uses for oral care (she can't brush her teeth because it causes some bleeding). She made a  mustache!

Feb 9 - Sleep, more chemo and feeling a little better

Today started out with sleeping a lot and feeling nauseous. Jessie hasn't been able to eat today or yesterday. The doctor's wanted to make it more comfortable for her so they started alternating anti-nausea medicine every 3 hours to try to keep the nausea at bay. It is working!! She got her second round of chemo today at 2 pm. So far, so good. She is drinking, but still does not want to even talk about food. She chewed gum while the chemo was going in. Some people say they can taste the chemo and the saline so it helps to have a different taste in your mouth.  She is having a little belly pain, but that could be due to the fact the not much is moving inside. I am getting ready to leave for the night. Her first night alone!!!  We are on day 5 out of 30 for this first round of treatment. There are 4 rounds all together. Let's hope she has a quiet night. Love you Jess.

Feb 8th - Day of Sleep and Nausea

Not too much to report this day. Jessie mostly slept (Thank God) all day and was nauseous. She didn't have anything to eat. I got here at night about 7pm. She woke up about 8pm and felt better. She drank some ginger ale and we read cards together. A fourth grade class in Potomac taught by Ms. Anne Gardner-Sydnor made Jessie get well cards. This is Jessie with all the cards on her bed. :-)

Feb 7th- First Day of Chemo

Tuesday- Jessie had her first dose of chemotherapy. Drug is idirubicin. It only takes 15 minutes by IV to get into your system. She has been getting the ATRA every 12 hours for many days now. She felt OK until later in the evening. Then she started feeling nauseous. She slept through the night mostly, but was woken up to be given nausea medicine. She is also receiving anti-fungal and anti-bacterial medicine to prevent infections. I think on this particular night her blood pressure went lower than the nurses expected. 90/40.  They gave her lots of IV fluids to try to bring her blood pressure back up. She was in a deep sleep.

Feb 6 - Preparing for Battle

I get the other kids off to school in the morning and head down to the hospital. School has received Jessie's email to her teachers about her diagnosis. They are working on getting skype set up in school for her to skype into classes. Jessie gets a PIC line put in. This is a better IV access and will give her access to use of both her hands instead of trying to text one handed. We need to remember what's important here!!  Chemo will start tomorrow.

Feb 5 - First day and starting ATRA

Sunday- All is well. We didn't get to sleep last night until 12:30am or so. So much going on. It is a very quiet day. Restful. Mike and I are both here. Just some bloods drawn and starting ATRA by mouth. Basically no visible side effects from ATRA. Jess feels fine and asks if Colin can come visit. He calls his grandfather and has him drive him down to DC. Mike and I watch the super bowl while Colin and Jessie watch the rest of their movie which was so rudely interrupted by the confirmation of the diagnosis yesterday afternoon.
Colin, grandfather and I leave about 8pm to head home. Mike stays with Jessie.

Feb 4th - Definitive Diagnosis

We rested on Saturday the 4th. No big plans. Colin came over in the afternoon to watch a movie with Jessie. We got the call from an attending at Children's. It is APML - Acute Promyelocytic Leukemia. We sat and listened in shock while the doctor explained everything on speaker phone. Then Mike and I went downstairs where Colin and Jessie were watching a movie. We told them we had the answer- APML. Doctor said we need to come back tonight to be monitored due to the risk of bleeding and to start treatment right away. Jessie wanted to take a shower. I told her to be careful and not fall in the tub. The doctor had asked her yesterday about bleeding gums while brushing and bruising easily. She had noticed these things lately. She had a new bruise on her thigh that she didn't know where it came from. After the shower, we picked up our overnight bags and loaded them in the car. On the way to the hospital, we dropped off Colin at home. He gave her his tablet to use in the hospital. "It has Netflix. She can watch lots of movies" he said.  "See you whenever" Jessie said. Little did she know, she would see him the next day.

We checked into the hospital by going straight up to the floor where our new home away from home will be for the next 4-6 weeks. 4East. Hematology/Oncology.  The doctor was at home putting her kids to bed and would be back to greet us. IV was started. Bloods drawn. Getting settled in her new room. Checking out the TV and games. She kept her phone by her side texting now and then. Doctor came by and went over the game plan. There is a clinical trial that she qualifies for. Less bad chemo drugs to see if we come out with same outcome- cured. After consulting with our secret contact who has lots of experience with clinical trials, we decide that it's a win-win. Less drugs, less side effects.

Treatment of acute promyelocytic (M3) leukemia

Early diagnosis and treatment of acute promyelocytic leukemia (APL), the M3 subtype of acute myeloid leukemia (AML), is important because patients with APL may develop serious blood-clotting or bleeding problems. This used to be treated with blood-thinning medicines, but is less often a problem now that treatment includes drugs like all-trans-retinoic acid (ATRA). Other treatments might include transfusions of platelets or other blood products.
The treatment of most cases of APL differs from usual AML treatment. Initial treatment usually involves an anthracycline chemotherapy drug (daunorubicin or idarubicin) plus the non-chemotherapy drug, all-trans-retinoic acid (ATRA), which is a relative of vitamin A.
This treatment induces remission in about 80% to 90% of patients.
Patients who can't tolerate an anthracycline drug may get ATRA plus another drug called arsenic trioxide (Trisenox). The most serious possible side effect of this drug is a change in heart rhythm.
As with other subtypes of AML, patients with APL then receive post-remission treatment.
Consolidation therapy usually consists of 2 or more courses of chemotherapy (with an anthracycline), usually along with ATRA. Those who can't get an anthracycline usually get ATRA plus arsenic trioxide for several cycles.
Consolidation is often followed by maintenance therapy with ATRA for at least a year. Some doctors may also add low doses of chemotherapy, usually with the drugs 6-mercaptopurine (6-MP) and methotrexate.
The possible side effects from the chemotherapy part of this treatment are generally the same as those of standard AML induction chemotherapy. But both ATRA and arsenic can cause a problem called differentiation syndrome (it used to be called retinoic acid syndrome). Symptoms include breathing problems due to fluid buildup in the lungs, low blood pressure, kidney damage, and severe fluid buildup elsewhere in the body. It can often be treated by stopping the drug for a while and giving a steroid such as dexamethasone.

About 70% to 90% of patients with APL are cured with treatment.

Feb 3: Bone Marrow Biopsy Day

We got up at our usual time (6:30 am) to get Sara and Drew off to school. Mike took care of that. Jessie and I, bags packed, left to pick up her boyfriend, Colin. He and Jessie talked the night before and he decided he wanted to be there. It was the best decision ever. He kept her preoccupied with games on his tablet. They were laughing, talking and just being with each other the whole time. When she was brought back to the room after the procedure and sleeping, I heard him whisper to me, "She is so beautiful when she is sleeping". When she was waking up, his face was 10 inches away from hers. He wanted to be the first thing she saw when she woke up. He was very patient and caring. He fed her crackers and held her juice for her to sip during the 1/2 hour coming out of the anesthesia. The doctor said the procedure went well (a nurse practitioner did it) and to come back in an hour after eating lunch in the cafeteria for the results. We did. When we came back up, the doctor came in almost right away to let us know the results were not definitive. No tests were positive that they could do immediately. He did tell Jessie that we could go home for the weekend, but to watch out for bad headache and bad stomach ache. It could be a sign of bleeding. They were doing more tests (he called them the finger print of the cells) and might have some results on Saturday, but most likely on Monday. They had us make an appointment in the clinic at Children's for Monday at 12:30pm and we went home with still many questions.

How did you find out that Jessie had this disease?

In November and December, Jessie was getting the usual winter germs, but they just didn't seem to be going away. She would get better temporarily and then get sick again. It felt like we had been to the pediatrician more in these two months than in the last 18 years! She had some blood work done as part of an 18 year old checkup (well visit). She had stayed home sick that day from school and was also sick the next day. Everything was totally normal except for her white blood cell count (2.6 (thousand)). The normal range is 4.5-11.5. The doctor asked if she had had a virus because they sometimes can see this drop in WBC when the body is fighting a virus. She said to feel better and get it redone in a week which we did. It was still 2.6.

Jessie continued to get better than stay out sick for a day or two from school. Antiobiotics seemed to get her better for a while. During the several visits to the doctor, they checked for all sorts of things, mono, limes disease, etc... The plan was to get blood work when she was feeling well after 10-14 days. That never happened.
When she stayed home from school again with a sore throat and feeling tired on Monday, Jan 30th, I knew we had to go back to the doctor again on Tuesday to figure this out. We went back on the 31st to the same doctor we had seen several times now and I looked him in the eye and said, "We have to figure this out! Something is not right". He ordered a repeat of lots of the blood work and he ordered new stuff also. Jessie met me at the doctor's right after school that Tuesday because she felt like she couldn't keep missing....  Little did she know. We left the doctor's office intending to go straight to LabCorp. Jessie's car wouldn't start. By the time we pushed it out of the parking spot and jump started it with my car, she had a job to go to. Blood work would be put off one more day.
Wednesday, Feb 4th she drove over herself right after school to get the blood work done (this 18 thing is hard for me to get used to :-) ).
Fast forward to THursday, Feb 5. at 4pm. I got a call from Mike. Message: "I need you to get home now. Everyone is OK, no one is hurt. I just need you home now."  I called him and he wouldn't tell me anything. I listened to my other message and it was from Dr. Dubleman, the pediatrician who said to call him right away. I knew they had found some answers. My heart dropped. I called Mike back and asked if Dr. Dubleman had talked to him. "yes". "What did he say? What is wrong with Jess?" I choked.  He told me that Dr. Dubleman suspected Leukemia. The WBC had dropped to 1.0 and the RBC had also dropped since the last blood test. There were also cells there that indicated Leukemia. He had made us an appointment at Children's National Medical Center at 8:30 am Friday, Feb 6th for a bone marrow biopsy. I needed to know more. I called the pediatrician and spent minutes waiting listening to music. I called back and hit the emergency button. I was transferred to the doctor after a few long minutes. He told me the details of what he saw. He recommended we pack a bag because he felt she would be admitted Friday after the results of the bone marrow.  Gulp. Hang up. Sob.
Jessie was hanging with friends after school and driving her boyfriend home. Mike and I were going to talk to her as soon as she got home. I texted her. Where are you? She was close. The door opened and closed. My head down. Mike said, "Jess, Mom and I need to talk to you in the living room".
Jess was hugging me on the sofa as Mike told her about what the blood work showed and the possibility of Leukemia and about the test the next morning. She shed a few tears. But not nearly as many as I did driving home. I told her the good news : the doctor said that the tests to check how her organs were doing were all fine so whatever it was had not affected her organs.
We were numb, but family members were doing lots of research on different types of Leukemia and on treatments and nutrition. We were praying and asking for prayer chains to be activated.