Week 4: Sunday

Today we just decided to get up late.  It was a late start to the day but we got much needed sleep. I must of pulled a muscle in my back because it was still hurting.  Jasmine has been so loving lately.  She's a different kid in so many ways.  After doing much of nothing and eating what little candy Jasmine got from the day before, I decided to get her a donut.  I'm kind of glad she doesn't really like candy.  I don't know how long that will last but take it as a blessing for now.  I dressed her up and put on her black headband with a orange flower.  Off we all went to DD before David had to head to work.  She knew what we were there for after I ordered a sprinkled donut.  She saw the box and her eyes lite up.  She was eager to help carry it.  We sat down for a minute and enjoyed a doughnut each.  This would be the last sugary item in her diet til late tomorrow.  We were going in for a couple of scans at a different hospital in DC.  Tuesday morning we would begin her chemo.  
When we got home, David took off and I started up on some house chores.  I finished up some of the dishes left from our early lunch/dinner.  I started to fold the laundry David started.  There was still laundry to be washed yet and the bathroom to be cleaned.  I hate leaving a dirty house to come back to. I wanted everything to be clean so that we would have less to worry about.  I compiled a list of things to be done and things to pack.  It just seems like there isn't enough time when you need it.  Her I am blogging and I'm watching Jasmine run off with our empty hamper full of toys now.  What a beautiful sight.  So nice of her to pick up while I take a break.  
Well, tomorrow will mark the beginning of course #2 in Jasmine's treatment.  I am trying to not think about what is ahead.  I am merely focusing on what we need to do to function.  The many things I must remember.  Meds, addresses, packed bags, car essentials for sickness,  drinks,  and snacks.  These were just a few of the things.  Car floor lined with shower liner, DVD's for the ride, barf bags, maps, tom tom, extra clothes, paper towels, clorox wipes,....etc...All car stuff checked.  I'm sure this will all become second nature at some point.  
I'm not looking forward to the drive tomorrow.  We will be leaving a little later and hope the traffic is not bad.  I hate the constant barking me and David do in the car.  Stress and anxiety just buildup.  I am going to try to make a conscience effort to not do that. At least Jasmine will be distracted by the DVD player this time.  I can only hope for things to be better this time around.  

Week 3: Saturday

I started out the day pretty early.  Jasmine was up and thrashing around the bed.  It was cool because she had nothing but smiles.  I don't mind seeing an eye looking right into mine when its accompanied by a playful smile.  As I got up my back screamed, "this bed is not made for 3". She led me by the hand to the living room where I began to notice just how cold it must have been.  Her extremities would freeze in no time.  I put on her toons for the morning and searched for a jacket she could use as a robe.  I found her slipper boots and put them on. She looked like she was getting ready to go out.  I skipped out on the hat and put on a jacket with a hoodie.  We had to do a couple of things before we headed off for some trick or treating.  
After breakfast we headed off to walmart for some quick necessities for our trip and post trip.  We got what we needed and I promised her we would play outside for a bit when we got back.  When we got home I unloaded the car and realized I had not given her the weekend mandatory medication.  Great!   What was I thinking?  I dropped everything to make sure she got it before it slipped my mind again.  
We played outside like I said we would.  We flew her kite for a little and played with bubbles.  She helped me keep the kite in the air while I ran for take off.  She cheered me on when we got it up and going.  We let the wind blow all the bubbles from the wand.  She was even more excited when that happened.  After taking turns for a while, I decided we needed to go in and have lunch.  She wasn't happy about going in but I told her we were having chicken nuggets.  When I we washed our hands and I pulled out the bag, she understood.  She was eager to help in the process of punching the numbers in on the microwave.  Not long after we had lunch and I threw dinner in the oven for David, I realized we had one more thing to do today.  I had to run our trash to the dump.  Woo hoo!  After dinner was out of the oven, I loaded the car up with recyclables and trash.  I made it back in 30 min.   Next I had to get Jasmine changed in her costume.  It wasn't easy because the sleep was about to set in for her.  It was about time for her nap.  
Surprisingly enough she was awake when I got back.  David and I changed her and then me and Jasmine rushed out.  We were behind schedule.  The Halloween festivities started at 4pm and I told my sister I would meet her then. It was more like 4:30 when we got there.  Jasmine had fallen asleep in the car as I suspected she would.  When I got to the mall there was barely any parking left.  This place was going to be packed.  So much for low key Halloween.  She was not so happy at first but livened up when my sister took her out of the stroller.  This pirate was not willing to wear any hat of any kind.  Good thing I brought the headbands.  She was fine with that but it unfortunately did  not go with the pirate theme. Oh well.  We made our rounds about the mall. The candy was given out scarcely, but we managed to get the idea.  Jasmine accepted any candy given to her and she dumped it in her bucket.  When she was given the opportunity to grab she went in and grabbed one.  She was a little more particular when it came to picking. A silver wrapped Hersey bar or a gold one,when those were the only choices.  HMMMM?  Most kids would pick a certain type of candy but my kid was worried about the color of the same candy.  Love it.  It just makes me smile.  She was definitely a little devil this afternoon than a pirate.  I knew she was tired still so I helped her out by carrying her for bit.  When she walked for a while and she got tired again, my sister and I decided to put her back in the stroller.  She fussed and I reached out to put her in and she clung on to me.  I picked her up all the way and set her on my hip.  She was grinning from ear to ear.  Go figure....I got played. I didn't mind carrying her around but Lord knows my back did.  I'd endure it just to make this a memorable day for her.
It was a short event.  It wasn't picture perfect but it was worth it.
Now I think its time for some advil for mommy, some antibiotics for Jasmine and some vanilla ice cream for the both us.  Bedtime will be early tonight. ZZZZZZ :) 

Week 3: Friday

 We thought it might be nice for her to have a good weekend before the week ahead.  She has been in good spirits all around.  I left work a little early today so we could go to Carter's Mountain for a little bit of everything.  Unfortunately, the weather was a lot colder and windy up there.  I don't think we were prepared for it that well.   I brought the camera with me in hopes of getting some good pics of the view and Jasmine in the pumpkin patch.  
It wasn't much of a pumpkin patch and I was kind of disappointed by it.  The hayride was empty and no one was purchasing tickets. Jasmine saw some other kids no older than 5 years.  She wasn't excited by the pumpkins in front of her but by the kids running around the patch.  When I thought she was heading for a nice looking pumpkin, she took a sharp left.  She was trying to follow the kids.  We followed her and tried to redirect her due to the fact they were already engaged in a game of chase.  When they came to a stop and sat on the pumpkins, Jasmine walked over and grabbed the younger girls arm.  She wanted social contact and nothing more than to play with them.  The girl just gave her a look and ignored her.  I told her that she was just trying to say hi.  She and her mom ignored us.  It was at that moment I felt sort of bad for Jasmine.  She's finally making social interaction with other kids but there was not much we could do to encourage it.  We had decided not to let her go to school with her immune system being down and worried about complications to hamper her treatment.   I know she misses it and wish she could attend. It's bad enough we have to worry about one of us being sick and bringing it home.  The last thing I want to think about is if other kids in the classroom will take the hand sanitizing seriously.  Not to mention, parents sending their kids to school when they are sick.  I dropped David off at work and now I think I'll join Jasmine in a nap that is in progress. 
Okay, so much for that.  It's amazing how loud the sound of the phone ringing in your sleep is.  Luckily my little sleeping beauty is not phased by the noise.  Ahhhh.....just like daddy.  I used to think me being a lite sleeper was a curse until recently.  I've found my curse to be my gift. My heighten awareness is what led us to discovering her earlier respiratory issues.  Now my long life skill was helping me with her around the clock "sickness".  
Flashback.  During her first admission for chemo, Jasmine had a close call.  It would have been something of freak accident if I had not woken up when I did.  She had two IV lines. One line was pigtailed to another which was smaller in thickness and length.  As she started to feel a little bit better she tossed and turned in her sleep to get comfortable.  The problem with this was she tangled herself in the lines.  I'd seen this many times before and dealt with it as best I could.  I would either unravel her extremities and hide/prop pillows on top of the line.  It kept her from rolling around and the line out of site.  Not this time.  I got up to check on her and the cord was around her neck not once but twice.  The smaller of course was wrapped around tightly and the second was looser and thicker. No one would have noticed until it was too late because I knew she was capable of doing this in a matter of minutes.  No one would be to blame making it something of a freak accident.  If you are a non believer in a higher power (GOD for us) after reading our story, I think you need help and hope that you find him. 
Today has been good and I hope tomorrow to be better.  She's eating well, and her sores are almost non existent.  Tomorrow the pirate princess will be out and about. Hope she keeps the hat on.  

Week 3: Wednesday

Yesterday, was a good day but I proceed with caution.  Jasmine had a good appointment.  Her numbers looked good and she did well with her chemo.  I'm sure there was the usual cries and tears but that's to be expected.  
The headband with the flower was a success. She kept it on the whole day and never tried to take it off.  Does she understand why? Does it make her feel pretty? Or, is it a mere comfort thing? Is it the gentle squeeze it gives her head?  My husband laughs, and tells me I've been watching too much Temple Grandin.  I've only seen the movie once, but I can understand the concept.  What ever it may be that keeps it on her head, still makes me happy.  
I was so relieved at lunch to hear that it had gone well.  I went to Claire's at lunch to see if I could recreate her headband.  They had so many choices and I found a variety of colored flowers that I could pin onto any headband I wanted.  My purchase was not in vain.  She was very interested when I layed it on the table.  We even tried one on.   Beautiful.
So David, comes home with another prescription for us to fill.  Since he just got back 40 min before I did, we decided to make a family trip to the pharmacy.  We knew we would have to wait, so we went across the street to a small local restaurant for dinner.  Its a nice family type restaurant with a guy some nights making those cool twisty type balloons.  You know, the ones that they shape into animals and things.  Anyways, we sat there for a bit before the guy came to our table.  Jasmine is not one for much direct social contact.  You can not get in her face and expect some one on one, especially as a stranger.  This guy didn't take it personal, thank God.  He did his thing and she watched partly.  When he was all done, she was very interested.  As soon as he disappeared, we got the reaction that he was waiting for.  She was so excited with it she waved it all around and nearly took out everything on the table.  It was a huge heart shape with a red heart in the center.  Along the sides of the heart were two bears hanging on.  She kept squeezing them.  What a way to top off the day.  As she played with it, I overheard a conversation at another table diagonal to ours.  There was a father and daughter about 4 or 5 years old.  She told her dad, " That looks like a little boy with a flower on his head".   He told her ,"I think that she is a little girl".  I was looking down at my plate when she said it but I managed to work a smile while I ate.  When I looked up, the dad looked like a deer in headlights.  I could tell his mind was searching and hoping that I didn't hear.  I brought my head up with the smile and looked directly at him.  The dad didn't move but I looked away from him and let it be.  I acknowledged that I had heard and was okay with it.  Was I really or was I putting on the act again?  I felt my eyes start to tear a bit but not enough for anyone to take notice of.  She's was just a kid and she was merely doing what a kid does.  They speak their mind with very little filter.  I was okay with it but it just triggered a quick sad thought.  I just let it go.  
Now we are just taking a look at the ToyRUs Christmas catalog that came in the mail.  HA!  She's never taken a liking to things like that.  She's been laying on the floor staring and turning pages. She's learning the ways and getting sucked into the ads.  I knew it wouldn't be long.  She may be autistic but she's just like any other kid.  She is expressing excitement to somethings more than others.  
The house is a mess but its a good sign that she's been busy. I can feel the energy again.  This calls for a DD donut for Jasmine and a french vanilla coffee for mommy.  Daddy's catching up on some ZZZZ but I'll grab him a donut.  ;)  

Week 3: Tuesday

Today is Tuesday and its like 4 am.  I'm up and making coffee and preparing to send off David and Jasmine on their trip.  I've picked out Jasmine's clothes for the brisk morning and warm afternoon ahead.  Something warm but not too warm.  I had to make sure I picked out something to cover her head.  Yes, it has begun.
Yesterday, David told me as I called to check in, she had been handing off clumps of hair to him to get rid of.  When I got home, I saw just what he meant.  I knew the day before it was shedding ever so slightly but never expected it to accelerate to such a degree. It was EVERYWHERE.  The clean sheets I just put on the day before, the recliner, living room area, kitchen floor and clinging to her clothes, etc.  It hurt more to see it coming out like this.  It was time to do what seemed at one point the extreme.  David buzzed while I held her on my lap in the bathroom.  She was calm and it went well until we tried to touch up areas he had not done so well.  I didn't look but just whispered in ear that she was doing awesome.  As the hair came down on both of us, she just brushed it off of me.  This was it.  I could not believe how cool she had taken it.  She felt her head and then felt David's.  It didn't last long.  She moped around for a little while and then she just started screaming and crying.  I thought it would be easier for a girl her age.  No worry about kids at school making fun, or just being self conscious.  It was not either of those things but her security we took away.  Jasmine loves to do two things, suck her thumb and play with her hair.  She knew and we tried to distract her.  I bought a pink headband with a big flower attached to it at Walmart before I came home.  I was hoping the flower would be a distraction for her hands and remind those who saw her that she was a female.
When Jasmine got up this morning, she was very upset. First, it was very early and not enough time to unwind before breakfast. Secondly, she knew her favorite thing was gone.   I played around with her a little bit and got her dressed, all the while pretending like nothing had changed.  She is still so beautiful but I know me saying it a hundred times doesn't bring it back for her.
I gave her her meds, packed David's vital bag of info, and put her new headband on.  I kissed them good bye and here I am. Too early to be up and too late to go back to sleep.
All I can think of is how I would like to be there today with them but know I have to sustain a balance between personal and work.  I need my job because we need two incomes to run this household and it also acts as an escape.  I get to put my mask on and pretend my day is just great.  Inside I feel like just hearing the just the right word or phrase, would start my waterworks.  For instance, when people ask how we are doing, I say fine.  When they ask how Jasmine is, I tell them she's started chemo.  I feel bad for those who have known her and knew she was sick for a while.  I just don't know how to break it to them easily.  Do I say, "Well we found out she has cancer and we started chemo"... crickets...."She's into her second week of chemo" followed by " we think she's strong and will do fine"....crickets.  Yeah, no easy way around it.  The silence is my kryptonite. Occasionally, you hear, "I'm sorry" or "I don't know what to say".   She's not dead to the first comment and at least they are honest concerning the second comment.  Its so awkward but doesn't have to be.  Positive and supportive comments are appreciated.  I've got my negative news already and I hate delivering it.  Its like reopening a wound everytime.  Deliver me some positive.  God knows this world is in need of lots.  I hope everything goes smooth today.  Times up.  I have to get ready for the grind.

Week 2 closing

Jasmine has been getting around the clock medicine of all sorts.  Her mandatory antibiotics, thrush med, and tylenol have all been delivered via oral syringe. I have had to record each dose and time to keep track.  Its getting to be very confusing.   She hates me and knows what is coming everytime.  Sometimes she tries to let it run out her mouth or swipe it out.  We were fighting and still are.  Great news is she has signed for me to feed her when she saw me eat a bagel for dinner.  She brought me to the counter like she has continually tried to do before.  I knew she wanted to eat but her choices of what she prefers are so limited and not something her mouth could handle.  She pointed her finger to my bagel and then to her mouth.  Oh what the heck!  The worst that can happen is a heartbreaking repeat of yesterday.  PB and J it was but with a smear of PB and lot of jelly to ease it.  The first bite was not big but small.  She tested the waters a bit and decided to go in for another.  No wimpering or crying.  Could it be?  Was this really going to happen? SUCCESS...no wait.  She was so hungry she attmepted to eat the crust and began crying histerically..  Oh no! Work fast is all I could think.  Remove the crust from her mouth so the rest can go down.  I comforted her and told her she did a great job.  I told her how proud I was for her to have tried to eat even though I knew it wasn't easy.  She started crying when I got rid of the crust from the half of sandwich I made.  I worked quickly to make another and cut all the hard crust off.  Ding, Ding, Ding... we have a winner.  Two sandwiches later and she drank a whole 6 oz. of flavored water.   God, thank you.  What's our plan for week three, PB and J for breakfast, lunch and dinner.   With this small relief, I get ready to go to work tomorrow and hope for a restful nights sleep. Thank you, Thank you.

Week 2

Sunday night I cut her hair to be proactive about the inevitable.  Her first haircut done by a non professional.  I cut as much as I could.  I hugged her to tell her I was sorry and she hugged me back.  With every cut I told myself, "no attachment"  but I hugged her again each time.  With each hug, she hugged me back.  Did she know?   Was she comforting me when I thought I was comforting her? I'll never know.  
This week came around quick.  Let's see...we were discharged Sunday and came back on to the hospital on Tuesday.  One quick push of another chemo drug as an outpatient.  The only trouble with this scenario was it took us longer to travel then the appointment actually took.  We chose to got to get treatment at a hospital that had experience with her type of cancer.  We knew it would be a drive for us but we would do whatever it took to get the best result.  We were beginning to feel the stress of the travel.  There was no easy way around it.   Travel via RR or bus with a sick child, no way.  People already gave us the look with the non verbal autistic thing.  We were the aliens in their eyes.  Expose her to a closed compartment full of germs while her immune system was down, get out of here.  This is was just the tip of the iceberg of worries.
Okay, so I forgot one thing that could have made it so much easier on Jasmine's experience.  At least I remembered to bring her ziploc bag full of new meds, paperwork, our new medical bible, barf bags, the just in case overnight bags and the topical.  I forgot the one important step about the topical.  I didn't seal the cream in place over the injection site.  I brought her anxiety level up because  I forgot something so simple but so important.  She did well with the chemo and we had a couple of close calls of sickness.  We found that she liked soy milk and was eager to drink it.  She was still not willing to eat.  Things were looking good by Wednesday and Thursday.  Her energy level picked up and so did her eating.  She was starting to act a lot like the Jasmine we knew.  
Friday came and things were okay for a little while.  She started to fuss a lot for no particular reason. We just couldn't figure it out.  I found that she was starting to lose her appetite.  Dinner was no fun.  I thought she had eaten two chicken nuggets but to my surprise they were still her mouth.  She had partially chewed them and left them sitting on the side of her mouth.  She was drooling.  I tried to get her to open or chew with a little push to the cheeks on either side. No such luck.  I tried to finger sweep it out and she resisted everything. She finally spit some of it out after I removed part of one nugget.  The rest of the night was on and off discomfort.  I still could not figure out from what.  It was not until Saturday afternoon that I figured out with a pen light and toothbrush that it was a mouth sore.  I called the doctor to find out what we could do.  She was obviously uncomfortable and refused to eat or drink anything. She said it sounded like thrush and would call in a prescription. By the time we got the prescription and started her first dose she had developed 5 more to the one I discovered earlier.  This was not good.  
I was so careful about brushing and rinsing her mouth with swabs.  I hate that this is happening to her.  It's not like she hasn't lost enough weight as it is.  She's hungry and can't eat what she wants.  She's trying to eat but has to spit it out because the process is too painful.  I hope it won't take a week to heal like the doctor said.  This was supposed to be what me and David referred to as the "lite" week.  Halloween is starting to look like a bust. Poor Jasmine.  God please make tomorrow easier for her.  If this keeps up, they are going to want admit her on tuesday.  The one time I can't be there.  I have to try to work all week especially because the following week will be a heavy chemo treatment. I want to be there that week. No negotiating on that one.  Work or no work.

Week 1

Week 1 was nothing like I imagined it.  Then again, who ever imagines their 3 year old having cancer.  All the literature I read or advice I listened to from personal experience, could not have prepared me for my emotional roller coaster.  Knowledge is one thing but what your heart feels and eyes see are another.  How do I explain to my child that this will all pass?  How will I know exactly how she is feeling if she explains every thing through a single outburst of cries? What body part hurts?  Do you feel like your going to get sick?  No answer just tears and misery.  I sat back and had to watch every waking moment what her expression or body language would reveal.  Drugged to such an extent that she had no energy to lift her own body to regurgitate, I propped her up in fear she would choke.  Time and time again, she continued to get sick.  They tried to find the right nausea medication that worked best for her, but it was a trial and error kind of scenario.   It was 48 hrs of misery.  I was so tired and had no desire to eat, but ate only because I knew I should.  The smell would consume me everywhere I went.  Even when I waited at the food cart line for Jasmine's meals, it was there.  I sensed that familiar smell among the people in front of me and behind me.  They seemed to be so numb to it.  I wonder if I will ever be like that.
We finally got discharged after a short debate about calcium and potassium levels.  It was all scientific lingo to me. All I knew was, my child had not held down a meal or a drink in that amount of time.  I wondered how she would survive outside this facility.  We had a long ride home and I was not sure what would happen in those 3 hours.  DC traffic was horrible and I was worried. We tried to get my husband to work on time and hope that she would not get sick in the car.  I knew the later would be a miracle.  We got my husband to work on time and got Jasmine cleaned up a bit at a gas stop.   The day wasn't over yet. We still had to go and pick up her prescriptions 40 minutes away.  I prayed.  When I got to the pharmacy drive thru I pleaded with the woman at the window to  fill the over the counter prescription I was given last minute.  I explained to her that Jasmine had just had chemo and threw up while in her carseat and I lost it.  The emotion of helplessness hit me.  My husband had to go to work to keep the insurance and paycheck coming, our child was as ill as she had ever been, I lacked focus and energy to keep myself together.  She was kind enough to get me the generic Tums to my order.  I thanked her and left.  The night went without much more incident.  I had to get ready for work myself the next day.