I can't tell you how many times I have written a post and kept it as a draft.  4 incomplete posts.  All having to do with our most recent Make a Wish trip.  I can't bring myself to describe what an amazing opportunity it was.  I could share every detail of it but to some it would seem drawn out.  I'm a detailed kind of person.  I remember each moment like it just happened.  We could never duplicate this trip because it was special in so many ways.  800 pictures taken in all and some were note worthy.  It doesn't matter because each frame and shot bring me back to the moment.  Whether it be a grimace, sigh, a blurry shot, I can still see what caused the grimace, why I was so tired, and the smile on Jasmine's face through the blurriness.  These are moments that can not be replaced.  
Jasmine was a new kid, different. She came out of her shell.  She was smiling like she did when she was 1. Before she was diagnosed with any lifetime diagnosis, she smiled genuinely and frequently. She was a happy baby.  The smile is still there but it takes a different kind of pleasing.  It takes more to please a child as they get older.  For her it was, meeting her characters in real life.  She looks at those pictures and remembers it clearly.  She may not be able to talk but I can see it in her expression like she knows what moment unfolds next.  It's priceless.  She remembers Amanda.  All I have to say is Ms. Amanda.  She can point her out in a photo that she's never seen.  
The moment was great because we were also relaxed.  Kids pick up on your tension and stress. When neither of those things are there, its liberating for you as well as your kids.  This seems to have been the case while we were in Orlando.  
So here we are to face reality again.  Wonderful memories at the forefront of some bad ones. The roller coaster ride continues effortlessly through its ups, downs, twist and turns.   Financial woes are always a topic of discussion on a daily basis.  Jasmine's education and autism are among the hot topics.  Our family in its entirety has weighed heavy on my mind.  
You always here of people going to counseling for a number of reasons.  It had occurred to me earlier that it might be a good idea for us to discuss with a professional the stress related to Jasmine's health and well being.  I never really acted on it before.  There was never enough time or money to do it.   I have finally called our insurance to see if we were covered for such a thing. Thankfully we are and as far as time goes, well, it will just have to be made.   I truly think if something is important to you,  you will do all you can to make it work or in our case, make the time.  This family needs to be fixed or at the least needs a stronger support system.  In some ways, I feel weak by having to fall into this realm of need.  I'm thinking even the strong need help.  I saw a quote on someones facebook that made me think.  I have no idea as to who wrote it.  It sort of went like, crying  is not always a sign of weakness, but that they have been strong for too long.   I guess, I realized that crying my heart out in words and on "digital paper"  is not all that is needed.  It's a constructive way to release emotion but not a good way of sorting and solving.  This is where therapy comes in.  I think it will at the least be a positive move in the right direction and a healthier one.  I don't want the negative to creep up on us and be irreversible.  I fear that their will not be much of a family left if we continue down this path.  The wood is weathered and splintering.  If left untreated, it will weaken. The end result when enough pressure is applied is breakage. 

Life after chemo

It's been a week since her chemo has ended and it feels lighter already in some ways.  We are finally able to exhale from our regular trips to DC.  David has yet to take Jasmine to her last two images before we can official be seen on a three month basis.  Unfortunately we will also have to follow with neurology as well.  At Jasmine's last and final chemo regimen, she had a seizure.  We were in the room when it happened and caught by surprise.  She had just finished with the last drug when about 20 min after she froze and was staring into the distance.  Her eyes were fixated and her mouth was making some sort of involuntary movement.  Her legs and arms were positioned in the fetal position.  They was a slight tremor throughout her body and her hand was firmly gripping a toy that I could not pry.  I kept calling her name and she didn't respond.  We called for help and opened the door to have someone assist us immediately.  I saw drool come from the side of her mouth and her lip turn gray.  I panicked and let out a "oh my God, Jasmine".   Feeling helpless, I just stepped aside as people started coming into the room.  I relaxed slightly when the nurse stated she was still breathing. It seemed like forever, but it was probably no more than a solid 2 min.  This was something I hope to never experience again.  After talking about this with neurology and oncology, I'm feeling that this might be more of an isolated incident. Either way, now we are faced with carrying a seizure version of an epi pen.  




Jasmine's starting to really excel.  She is a lot more verbal (no true words, but definitely trying to say something).  She has shown us that she really does understand and grasps much of what we have been trying to teach her.   We are now the ones that are learning.  We just sit back and let her show us what she can do.  Of course, there is the occasion stern correction for bad behavior.  She is challenging us in new ways.  It only means that she is developing and growing.  Her personality and abilities are really starting to come out.  Her new interest in drums, her absolute love of water, and her interest in mechanics, are just a few.  I love how she is starting to help me with cooking.  She's got such a great memory.  She remembers where the cookies in a store if we've only been there once.  She remembers what we need to make grilled cheese or pancakes.  She's waving hi and bye, and even signed (once) thank you.  We have lots to be thankful for.  
As far as her health, we can not truly state she is in remission just yet.  We have yet one more scan to do and have her port removed.  It was unfortunate that we were unable to make the appointment made for Jasmine to do this but are hands were tied.  It was on a Monday first thing in the morning.  David didn't get off from work til 5:30am Monday and I had to go to work as well.  The kicker is that we have one definite car.  The other car has not been working for a couple of weeks now.  It doesn't have long even with its most recent fix.  Let's just say its a point A to B kind of car.  Its not something that should do highway time.  David just had a very long day at work and would be late to the appointment anyways.  I had to get to work no question.  It was all wrong. 


Like most of what we have gone through this past year, we know when it rains it pours.  Not only do we have a 50/50 car we just use for short A to B trips, we had a HVAC system on the fritz.  It was 17 yrs old and now going to go bad.  My sister was nice enough to assist us in facilitating a much needed repair during that hot week we were gone.  It was brutal on the dogs.  96 degree days outside who knows what it was inside with no AC.  We knew our time was running out and needed to make a choice.  HVAC or car. We knew there were specials and rebates at this time, so we got the new HVAC.  You can get AC window unit but you can't get a heater to keep the pipes from bursting or keep you warm in the winter. This house has had more emergency improvements during her treatment than it had received before.  October it was the well water pump, April it was the plumbing/ septic backup, and now the HVAC.  I will not dare say what I think will be next.  I'm actually trying to think up a sensible plan for it.  Semper paratus.  Seems to be the way I think and glad I was once apart of a service that exemplified it.  I guess I should get ready for the soon to be mental breakdowns me and David are near the verge on. Its like that whole fight or flight thing.  The fight part seems to be over and now things are starting to surface.  Things I can't even begin to explain or we can't even seem to sort through with any clarity.  Mixed emotions, views, life outlooks, our future.....  Our life is a mess but we can only do one day at a time.   I no longer have respect for the standards I once held.  I still try to pay my bills on time but don't sweat some of them. So what if their a couple of days late, I'm going to have a smoothie for lunch. I'm going to suck that smoothie down and enjoy it.   My sanity needs to remain intact.  I will not overload my mind with heaping loads of stress, or petty nonsense.  I'm no help to any one if I can't keep that together.  The smoothie is my moment of freedom and complete relaxation.  Its the only me time I will have all day.  It's my get away from our daily grind.  
Me and David talked about lots of things yesterday.  What it all came down to was that we were jealous of everyone's normal. Everything from date nights, weekend getaways, me time, lounging with friends for an evening, things we never really awarded ourselves as frequently as some. Why?  Because our daughter has required more of us than most parents have had to deal with, family is not a hop or skip away, and sometimes we couldn't afford to.  Not to mention, our work schedules that allow us to be sole care providers to our daughter.  Yes it cuts on childcare costs, but at what expense.  We rarely see each other for more than a couple of hours.  Family time? When?  When we tried to point the finger, we couldn't narrow it down to anything or anyone.  We were wasting our time looking for an answer.   It was then that I realize it was no one's fault. We were dealing with this because this was life.  It has its down sides and it has its ups. Right now we were dealing with a down slope.  It could have been a trench if it were not for the big help we received.  Everyone will have their own trials to deal with at any given time.  When things look up for us, I'm sure the opportunity to help someone in need will arise.  We can only do what we know is right and pay it forward.  We were given this struggle for a reason, its our own personal strength building path.  
David laughs. In what was just a moment of tears minutes ago, I have turned into fuel for a blog.  Funny.  I used to think that blogging was helping people better understand what it was like for a parent to go through this with their child.  I wanted to write about how strong Jasmine has been and what a warrior she is. Now I see it as a cheap means of therapy for me.  I should rename this blog "OUR FIGHT".

End of Treatment Just Days Away

I haven't felt like writing much lately.  My mind has been preoccupied with trivial things. I feel like I'm finally opening my eyes after a long nightmare you just can't wake up from.  There is all of a sudden more air to breath.  When I look around, I see and can almost feel a little more normal.  The only part of this that doesn't seem to sit well with me is our neglect of the things around us. Everything from friendships, family, and environment.  I know there was no time or energy to be spared on any of those things during this process.  I still feel like we are going to have to pick up the pieces and put them back together.  I'm looking forward to time off in the near future to not think about anything. 

On a brighter note, the half marathon took place 2 weekends ago.  I am so grateful to the team and all who donated.  We could never thank you enough.  It was great because Jasmine was super excited to be at the event.  We had a great time and wished we could have been at Amanda's run too earlier this year.  Not to mention, some of the other donations we got really came at perfect timing.  We somehow let a bill slip through without having set up a some sort of payment plan. Thinking it was one we already started paying on, we didn't think anything of it.  We got our first ever collection notice in the mail. The amount miraculously was the same as the total of other gifts and donations we received that weekend.  It literally saved us. With that situation out of the way, we will never let that happen again.  It was too close of a call. 

We are also due to have extended school year services start over the summer.  Jasmine will be receiving extra therapy other than speech.  We have yet to get the details on that but are happy to hear it is on its way.  

Jasmine's past treatment before the run went well.  She was such a big girl.  She didn't fuss or cry with anything related to her pre treatment, treatment or post. She even took her vitals sitting in the chair all by herself.  We even got her to do a finger painting or two.  She took her Ariel with her everywhere. The doll definitely needed to be thrown in the wash when we got home. 

A couple of experiences have stood out to me over the last couple of weeks.  The first is one of a little girl at Panera.  When we got done in DC that last treatment, we stopped at Panera to eat.  Of course some people turned to look at Jasmine which is something I expected.  After we started eating, a girl about 8 or 9 came up to our table and asked if Jasmine would like a cookie.  I asked Jasmine if she wanted it, but I already knew.  She made her usual gesture to signify yes while keeping her eyes fixated on the cookie.  I told the girl yes and thanked her so much.  The girls actions took me by surprise and left me feeling grateful to some parents who took the time to explain things of this nature to their children.  To the little girl at Panera, I thank you so very much. The second experience came from a girl who was about the same age.  We stopped at McDonald's the day of the run to get Jasmine some lunch.  While we waited for breakfast to end and lunch to start, Jasmine played in the play area.  There Jasmine played at the end of the slide as she always does.  She merely takes a couple of steps to climb at the start and comes back down or crawls the length of the end of the slide.  She's never ventured past most those points to my or David's knowledge.  There was this girl who came over and talk to us about the run and asked if Jasmine had cancer.  I explained why we were there and yes she did. She asked me how old she was and told me about a special hour long show she saw about cancer.  The show presented all the cancers and what special places the kids got to go to cheer them up. She told me her cousin said she wish she could shave her head and go to all those places.  Her cousin, as she continued to tell me, was wrong in saying that and she explained to her how it was not right to do that.  She asked me if Jasmine wanted to go up the slide and I explained that she didn't talk but thought she might like it.  She played with Jasmine and asked her questions as if she were giving her answers.   Jasmine followed her after a little hesitation.  Somehow this little girl had actually convinced Jasmine to climb up the slide.  She tried so many times it was as if she was determined to go this way.  When a much younger girl came in to play this route, Jasmine was excited and tried to grab her hand to join in.  The little girl retracted and backed away.  Jasmine tried several times smiling with excitement but she proceeded to back away.  I explained to Jasmine that she didn't want to play.  Jasmine's new friend tried to snatch her attention back to climbing up with no success.  After a while I suggested that maybe they tried the start and work over to the slide.  I really didn't think she would go past her normal set point. Her friend just came back into play and coaxed her to enter.  I encouraged her to keep going as she looked at me for some sort of approval.  Before I knew it, Jasmine was gone and out of site.  She was in the tubes somewhere. AMAZING!  I was both excited and nervous.  What if she didn't come back out? I couldn't go up there and fetch her. Who could if she got upset?  Maybe this was a bad idea? Before long, I could see her through a Plexiglas window at a steering wheel.  The girl was still there talking to her.  Now Jasmine refused to leave this part.  She was fixated on the steering wheel.  I waved at her  and told her food was ready.  She would normally be excited by this but she was more excited about what she was doing.  The little girl was patient with her and stayed.  I kept thinking if this little girl's mom calls her to go, we are in trouble.   I tried to talk to Jasmine from below the box and told her to come down.  She did after a long while.  The girl coaxed her once again.  This little girl was a perfect angel.  I told her Jasmine has never done that ever.  I thanked her so much for staying with her and playing with her.  To the little girl, who's name escapes me, thank you so very much for having a big impact on Jasmine and us.  This was such a big breakthrough.  The third event is something completely different.  I find it hard to accept help from others and always have.  It's a pride thing that I'm slowly working out. This experience has been humbling in so many ways.  But when we were told we had a check coming to us from someone who is also going through treatment, I felt bad.  I was touched and felt sorry for them. I couldn't believe someone was going through or soon to be going through the same financial hardships would give us something.  I thought so much of the gesture and thought what a great heart this person must have. Still I feel bad for even accepting it when I know I can do nothing to thank them.   It was so heavy on my mind that moment and out of no where Jasmine comes up to me.  I see the biggest Kool-aid smile and she has opened up my New Testament bible from my first communion.  She's holding it out to me with the pages of II Corinthians 8,9 flat out.  She kind of demanded me take it by shaking it in front me, all the while still smiling.  I take it and she walks away as if her mission was done.  I read it. I haven't read the bible in ages.  It talked about generous giving. I don't know what to say other than I think God was trying to talk to us at that moment. I don't want to misinterpret it but I found it ironic that the topic I read about was heavy on my mind at that very moment.  Overall, I have to say all the above has been mind blowing in such a positive light.  Its like everything  I've been waiting for is here at the finish. 

The light is at the end of the tunnel.  After Memorial day , we go in for our last treatment.  I can't believe how much time has past.  What happens from here is just scans and 3 month follow up.  Eventually, we will have to go in to remove her port as well.  We pray and hope that her future scans come up negative.  That is all we can do. For now, we will just enjoy the long weekend and relax before this last treatment.  

Week 28

We are coming down the home stretch.  Jasmine had her third to last chemo treatment this week.  It went pretty good. She was such a big girl.  She behaved for the most part.  We never really had any fits or episodes to try to calm down. Other than the fact that she would be very upset if I left her view.  Everything from getting out of the car, to trying to use the facilities by myself, ...it was must wait for Mommy. It makes me feel all warm inside but troubled all at once.  I try to explain when I do have to leave and why but it never gets across.  I let her know that Mommy has to use the potty too but realize that I need back up the minute I turn my back.  Several times she tried to escape the bed with IV lines and all to keep me from going to the in room bathroom.  I had to have David hold her back.  Sometimes she just wanted to be held and other times she just wanted me to hold her hand while she rested.  I have no explanation for this suddenly strong separation anxiety.  So to avoid any major episodes, any time we were on foot she followed me. If she refused to listen I used this anxiety to my benefit.  I told her I was leaving and started to move on to which she responded as expected.
Beyond this particular problem, I find that she has grown so accustomed to the routine and what to expect next.  We started out with our labs drawn before heading down to radiology for our Chest CT.  As expected, there was another mix up with scheduling.  They made it happen anyways with a short wait.  Luckily this was not something she needed to be sedated for.  Anesthesia is like non existent when we do have to have her sedated. Poor David had to deal with that once again the week before.  But that's a whole other story.  Jasmine got her CT done while she slept.  We could not ask for more.  We got her upstairs and got a bed pretty quickly.  Lately, the hospital has been seeing an influx of inpatients.  The last couple of times we have had to wait in the outpatient clinic getting prehydrated while a bed becomes available.  So after we get settled, we get lucky with Jasmine's first output.  We met the specific gravity level needed to start chemo.  Once we get chemo started, I just wait and watch.  I watch the process and the clock.  I read my book while Jasmine just rests with her hand behind her head.  Everyone always says she looks like she's just relaxing.  I tell them how when she was in the NICU with her Isolette covered, they would lift it to check on her and find her in this same position.  Arms folded behind her head and legs crossed.  They joked about it and said she looked like she should be on a beach somewhere. Her eyes were covered with the bandage because her skin was not completely formed yet.  They almost resembled sunglasses.  Some things never change.  
Jasmine's doctor said her CT came back with the report of something on lower right lung lobe.  She believed it to be a fissure. My ears accept what she's saying but my mind is processing this.  In my heart I hope that what she says is true but my mind won't let it be.  I'm worried and find myself crying for no apparent reason since I received this bit of information.  I act like this is just part of the routine and want to know when her next Chest CT will be.  I'm thinking the next CT will have to show either nothing or something. She tells me it might be the end of treatment but will check the her treatment roadmap. 
I'm very worried.  I can only remember the little blurb that was on Jasmine's initial chest xray this time last year and what that turned out to be in a matter of 3 months.  I don't take things lightly anymore. I'm keeping my self defense mechanism in place and getting myself prepared.  The thought and theoretical possibilities make me think, what do we do now?  How do we beat this? Do we do another round of this all over again? Do we do radiation?  Surgery?  I'm going off the deep end with legitimate questions for a theoretical possibility. My logical reasoning is becoming shaded with emotions I can't seem to get under control.  Time is both a gift and a torture.  I look at every hug as if its our last and treasure each day that I get to receive another.  The torture of waiting to find out how this will all pan out (at the moment the new findings) is what pains me. 
So now that Jasmine is home, she is barely eating or drinking.  They reminded us before we left that her counts were low.  We know with the neulasta her counts will come back up again. I know that if she doesn't start the day off normally tomorrow that I will have to call the doctor.  It may mean a trip to the ER.  I had hoped to do an easter egg hunt at home but might have to put that on hold.  We've been down this road before on a holiday.  We will make up for it with our back up plan. There are still some easter treats that are non edible in her basket.  She will be thrilled to see what they are either way.  

Week 26

Today is Friday. TGIF.  Things are going.  I finished doing our taxes on Tuesday evening. I hope they are accurate.  This would be the first time in like 14 years that I have done them myself.  I'm not completely confident of the whole Turbo tax thing.   Unfortunately, with the govt shutdown our refund will be postponed. It wasn't a significant amount but it was something to pay bills with.  Well I officially switched cell phone providers and pay month to month.  It keeps my bill low and affordable.  Its no blackberry but it does the job.  

Well the latest saga is that Jasmine has some severe separation issues.  When we went for Jasmines last chemo, it had become apparent that this was not just a passing thing.  She cried every time I left her sight.  It's been like that all week.  A struggle for all of us.  One for Jasmine to get over without making herself sick, for David to deal with chaos after my disappearing act, and for me guilt and worry for leaving.  She's regressing in some ways. Some of the things that have been happening recently have been known to happen to parents with children of a lesser age.  Since she's been out of school, her social skills have been compromised.  David thought these anxiety issues were only caused by me but today she proved him wrong.  When David took off to go to work, Jasmine started crying and pushed me to the door.  I let her see David get in the car, and she went ballistic  when he reversed the car out the driveway.  She has become so accustomed to us doing things with her that on Tuesday she let us know it. Tuesday, David got up early to take Jasmine to DC for a MRI and followup.  Well, I knew that this was going to become a problem at the door.  I decided to walk Jasmine to the car myself thinking I could fake her out. David got into his car and started the engine.  When Jasmine realized it was his car door handle I was reaching for, she got really upset.  She cried while pulling at my car door handle instead. She started stomping and hitting my car.  She fought me in trying to get her strapped into his car seat.  He said she cried and screamed for a good hour before she calmed down a little bit.  It was a long day for them.  They didn't get home until almost 9 pm and left at 6:30 am.  Wednesday was no different.  I went to work and she had managed to slide herself underneath the window blinds.  She pounded on the window crying.  I waved goodbye and left. David said she kept pulling David's finger to get him to open the front door.  The nice part is that I'm greeted with a nice hug or huge smile when I get home.  Unfortunately, I had to experience  a small taste of what David had to endure.  It was no fun trying to calm her down. 
Jasmine's doctor emailed David about her MRI and it was thankfully negative.  We also got our results from the genetic testing part of the PPB study.  It appears I carry the mutated DICER1 gene.  This gene it appears is the culprit that sent us on this journey.  It has certainly given me a lot to think about right now. However, I'm actually focused on the now more than the future when it come to this information.  I want to continue to participate in the study as much as I can.  I know that someday they will get to the bottom of this and I need to know that I'm doing something to help solve the problem.  It is unfortunate that there are so many issues with trying to get legitimate information when it comes to family history.  I wish I knew our family tree better or more specifically our family medical history.  I hate to think about how asking simple questions like "is their any medical problems in our family?" can provoke such a guarded response.  Maybe its just a old school way of thinking, a cultural thing, or just lack of knowledge.  I wonder what goes through their minds.   The question is asked with no ill intent but merely just a cry for help in gaining useful information that can save a life or even lives.  I encourage those who don't have a recorded medical history to do so or share it openly with your loved ones.  My history is a mystery for many reasons, some are just from a mere lack of medical care, and some are from denial (maybe to keep loved ones from worrying). It does nothing but hurt the ones you love more.   I truly think that even the simplest of things that were once overlooked could have been something greater in disguise.  My perception of things have changed greatly.  I don't have the cultural perception of "wishing bad" or "its all in your head" or trying to make others go through what I'm going through because I'm miserable.  My only intention is to be open and honest to make others aware. I care about what happens to others enough for me to inform them what is most definitely there. When I had my miscarriage before Jasmine, I shared that information with others after I grieved.  I shared it because no one would with me. NO one told me how common it was. Everyone shared the positives of an experience but never the negatives.  I think they should be shared equally.  Its a 50/50 chance.  You never know which side of the coin you'll be looking at.  The truth can hurt sometimes, but it can also set you free. 

Three more treatments.  Jasmine's eyebrows and eyelashes have hung out longer this time.  I wonder if her body knows the treatment is coming to an end. Thankfully she is growing and keeping a normal growth curve. She must be the only kid her age who likes mint.  HA! She loves mint oreos.  It must be from her mint flavored oral swabs that she has grown to like the taste. 

Week 24-25

We are maintaining.  Looking back on our first months of treatment, I find that this is true.  I think about all that has happened and how now we just function as if this were the norm.  It has been our norm, but not the everyday persons.  Jasmine has managed to get through this so far with negative results.  We still have 4 more treatments to go and feel like there is finally an end.  We know that we won't be out of the woods until after 5 years have passed cancer free.  My mind wonders before I go to bed about what will happen when chemo stops.  I'm scared, happy, sad, worried and tired but my thoughts are moving like a tornado.  I can't even focus on one thought long enough to have a single reaction.  I cry and just tell myself to sleep because I'm tired.  I have to talk myself into sleep now when I'm by myself.  It used to be that my head would hit the pillow and lights out (whether they were on or not).  Now I go through the process of talking myself into it by trying to emphasis the softness of the pillow, the low light coming into the windows, how the bed has just cradled me, etc.  Ridiculous, I know.  Between those thoughts and my list of things to try to get done, it consumes me. If this is what I have to do to sleep, so be it.  
  Unfortunately, sleep can hit me at the most unexpected times.  I went out to Walmart at like 7pm to finish up grocery shopping and take Jasmine with me.  She just finish eating dinner (1 hr and 30min later) and I knew she would stay awake for a good hour or two after.  I rushed through the store making circles because my list was all over the place. Even after all this time, I'm not oblivious to the stares.  I get through my list, wait on line and I all of a sudden feel tired.  It starts with yawns and then progress to the watery burning eye feeling while leaning on the cart. When I'm trying to put the bagged items in the cart, I catch myself in one quick motion.  I lean on the debit machine counter get myself steady.  It was only seconds and I'm sure no one saw.  I tell myself to get it together and make it out of there. By the time I get home, I get my second wind of energy.  David comes home early because he's not feeling well and I continue on with my chores.  I scrub the tub and put Jasmine to bed.  I watch some tv on netflix and call it a night.  So much for a second wind, I forgot to give Jasmine her medicine and will have to remember to give it to her ASAP in the morning.  I remember this at like 4 am.  My mind is going in my sleep.  

 Like the moms on the lunch line at the hospital, I have accepted this as our routine.  It's life unexpected bad turns in addition to our major twist that I can not get used to.  It keeps me on my toes and on edge.  The budget cuts our in progress.  Cell phone soon to be a mere 30 bucks.  Dish is gone and packed up ready to send off.  We've negotiated a minimum rate of payment per month with the hospital.  It gives us something we can manage but now it will take a long time to pay down.   We hope that in the future things will be different.  Good things are we have had help from generous people from all over.  The race fundraising, friends, family, people we don't even know.   The lights are still on, our phone is still connected, and  food is still on our table.  We have much to be thankful for and would have not been able to stay afloat without the help of others. 
  

Today is Sunday.  This weekend has gone by way to quick. In some ways, I'm happy about it and others I'm not.  I think the part that I dislike the most of it is because like most I have not accomplished all that I had hoped to get done.  When you have tasks and list of things to do building up, it becomes very frustrating to watch the list grow. Its hard to get them done when you are juggling the fact your child can not really mingle with the public for the next 10 days.   I try and do my best to keep Jasmine low profile.  I know that a trip to Walmart is a big no no.  I know that if I take her out of places in and out too quick she goes into a spaz.  Sometimes I can get her to calm down other times its too difficult to control.  She's a creature of routine and  hates having to readjust too much.  Multiple trips to different stores can spark up the worst tantrums.  She's so big now that it makes it virtually impossible to get a hold of her with out hurting yourself or her by accident.  The good part of this weekend coming to a close is that I don't have to be stuck inside anymore. I can go to work...talk and mingle with people.  My weekends don't allow for much of any of that.  I have yet to reconnect with friends. I have no idea what's going on in their lives.  Facebook is my only connection to them.  It allows me to have an inkling of what  is happening around me.  I guess you can say my weekends have become depressing.  David works and Jasmine is stuck with me at home.  She is also stuck with all my household chores, my lack of energy sometimes, and my up and down moods.  I realize when I attempt to do more than my low energy can withstand, I'm actually trying to keep myself from getting sucked into the downward spiral of depression.  All the worries of stress, relationships (my marriage, friendships, etc.) needing damage control, and financial woes, have all lead to this spiral of mixed unpleasant emotions.  I'm ignoring my needs to satisfy everyone else's.  I'm letting my physical appearance fall apart.  I dread the day I have to take a picture or spend more than 5 minutes in the mirror. My me time consists of me reading a book during my lunch hour at work during the week.  On the weekend it consists of me either reading after 10pm til 12 or 1am or just watching a movie during that time.  There is no time to catch up on much needed sleep.  I'm so tired when I get up that I feel like I didn't sleep at all and on to the next day.  
Yes, I'm evading my troubles and not facing them head on.  How do you face something that you can't see or do much about head on?  Cancer has offset a domino affect in our lives.  I suspect that I'm not the only one damaged by this indirectly.  David is undergoing his own funk.  We deal with it in completely opposite ways.  It brings that parts of our personalities to their most extreme level.  I'm a go go go kind of person and he is more layed back.  It used to be that it created a good balance  and now when our two worlds meet, its almost threatening to our relationship.  Poor Jasmine must feel the tension building.  She pulls us together sometimes and gets us to hug or give each other a kiss.  She smiles so excitedly when we give into the demands. She knows and I can't help but feel this is just a sign for us to not forget whats important.  I pray to God that things will get better, to continue to give me strength when I feel my weakest and hope that we our serving our purpose as we should be in the grand plan.  I hope that I'm not fighting against what message he is trying to send to me personally or missing it entirely.  I realize he has given us free will but its in mine to remain strong.  I don't want to cave in and I'm starting to wonder if that's what he wants from me.  By staying strong I don't relinquish my control over the little I have left to control. Hmmm? I wonder.  I wait for the big sign but am afraid to see how obvious he has to make it for me.  


On a lighter note, Jasmine's treatment this past week went well.  It was a long few days but it was very much the same as last.  4.5 hrs sleep, 3 hrs drive, awake 20 hrs, broken sleep over 6 hrs, and up the rest of the day to start it all over again the next.  The good news is that Jasmine has 5 more chemo treatments left.  She might have a good surprise coming her way when it is officially over.  I think she will be thrilled with it.  Unfortunately for Jasmine, she will not longer have her tv.  We had decided to cut our cable to help with expenses long ago, and were finally able to do it.  We had to wait until our contract was up.  She's going through withdrawals for time being.  I admit it sucks but we have to do it to stay afloat.  We are still in the process of deciding to drop our cell phone contract when it is up.  We've cut back in that department as well.  Many changes are taking place and adjustment is not easy but we shall overcome. 

Week Whatever: Anger

What a waste of time.  I went in for the SSI interview today.  Few words come to mind, disappointment and anger.  I filled out this lengthily child disability report.  It took several hours for me to compile all the medical history information in detail. They wanted to know every doctor she had ever seen, every hospital, last visits to each and for what.  The list goes on.  What kind of test and x rays were taken and for what.  I'm glad that I hoard appointment slips and have a great memory for dates and most every major visit.  It was all in vain.  I had called to set up an interview time in which they took some information from me. They asked me simple things like how many people lived in the house hold, own or rent, both our incomes and what was her disability.  I told them how much we made which leads me why I'm so upset.  We set a date.  I went in and from the start of our interview I'm told that we make too much.  She's disabled but we make $694 too much to be considered.  The girl who took my application anyways and told me they would keep it on file if that fact should change.  I gave her some of the same information I had given in the report and she asked what our medical expenses were.  I told her we owe $10,000 for this year already.  Not to mention we were still paying on last years hospitalizations prior to the diagnosis.  She  went and asked a supervisor if she could count these expenses against our income.  As I suspected, he said no.  I could tell she felt bad and was trying to do what she could.  I thanked her and went on my way and ready for the water works that would follow as I got in the car.  
I contained most of my tears and let it out as soon as I got home.  Angry and upset about how being honest and trying to do the right thing never gets us anywhere.  We try to make an honest living, work hard, faithfully pay our bills (on time for the most part), etc.  Going into that office was like the light at the end of a tunnel and what I thought would answer some of our troubles,....the light has blown out.  I realize that I have a better chance at winning the lottery than getting help from the government or state.  The rope I saw in the distance to save us from drowning was just short of grabbing onto.  I guess we will have to wait until the swells of trouble lift us to it and hope we don't drown before then.  If it were not for the help of others and their kindness, I would have lost all hope.   For now, I have just lost hope in a false system.  The system I have paid into for so long that now I can't even get help from it.  Yet I watch those driving Escalades, walking around with Coach bags, have iphones and go on nice family vacations all reap the benefits of the same assistance I'm asking for.  I"m angered because I'm to damn honest to lie and cheat. I have a conscience. 

Week 19: Friday

It's Friday. TGIF.  I was relieved to have gone into work today and not see patients. This week has been interesting.  With the start of Sunday came of course the unthinkable.  The plans I had to finish up the mess I created took longer than I expected.  The house was in disarray and we had chemo this week.  There is nothing worse than to come back to a messy house.  Its inevitable that when we get home we are unpacking the car of our dirty clothes and what if items.  I would rather be overly prepared than unprepared.  Getting back to Sunday....the plan was to clean, organize, bake cookies, and then make a card for David from Jasmine.  Well, that all changed as David was getting ready to leave for work.  When he hopped out of the shower and flushed the toilet, the toilet wouldn't stop running.  Apparently the ball had disconnected from the rod.  I'm not a plumber but I was going to have to figure out what I needed.  We have a well and I was not about to run it dry with this scenario. I broke out the complete do it yourself book I have.   I looked up toilet parts and guessed what I needed. I told David to look up on the Lowe's site what parts they carried.  I in the meantime was trying to figure out what I could wedge underneath the deteriorated rod to keep it from running. Ah yes, the rubber carmax key chain sitting in the miscellaneous bowl.  Not enough leverage...2 pieces of a wooden skewer. Done.  Well my attempt worked but I didn't know if it would hold up by the time I got back from Lowe's.  
After buying a couple of parts and a new fill valve.  I tried the cheaper parts first while Jasmine started on her movie.  I hoped that I would not have to be more involved in the project than those small parts.  Thankfully with a new rod and ball, we were back in business.  It would have sucked if it became a bigger project than I could handle.  Not only was this our only bathroom but it was Sunday.  The plumber we used last time left us a hefty bill but once again bad timing and definitely a must fix.  No running water can be a problem.  With that unexpected job done, I trudged on with the cleaning.  By the end of the evening we were making cookies for Valentines day.  I cheated a bit with the crafting for David's card.  I let her pick out the shiny puffs to stick to our glitter glue and I pasted them on.  Its the thought that counts, right?  I had opened a bottle of wine for myself and we danced away earlier so it didn't take much for Jasmine to get tired. I set her with her bedtime movie and set out a plate of heart shaped frosted cookies for David. I placed his card next to it and started to wrap up the evening.  
Monday was the same old, just work.  I had already packed up most of our stuff the night before and planned to come home to already made dinner.  We would have to be up early and I wanted to be well rested.  I didn't get to bed as early as liked because we were arguing over what time we should leave.  As usual, we came to a decision of early and nothing more specific than that.  I set the alarm for 4:30am.
Tuesday morning was more like 4:45 and then some. I was tired and we had to get out the door.  David had some last minute packing as usual.  Still undecided on what to bring to entertain himself.  I could care less since I asked him 2 days earlier to pack or know what he was taking.  I no longer wanted to be responsible for those kind of details.  To each his own. I brought my nook for me and Jasmine's hospital toy bag.  I got the car started and packed it with juices and tried to figure out what we would need to bring for food.  We were trying to conserve cash and eating expenses at the hospital.  It's like eating out at Panera or Chipolte but not getting anything better than 7 eleven food.  We knew there was going to be a good chance we would be staying at the Ronald McDonald house which had moved.  We didn't think we would have enough to get delivery or want to walk in the dark on unfamiliar streets.  So I opted to taking some cup a noodle and some bread in a Ziploc with a jar of peanut butter.  Its all good.  Jasmine had a case of capri suns and we had our tumbler cups for water.  Dinner taken care off. 
By the time we got down the HOV up 395, we heard about the fire at the Reagan building. We knew there would be traffic but hoped it would not have us detour our normal route.  I was not prepared for that.  I should be but I just needed to get there the easiest way possible.  We were going to be late for our appointment.  Everyone was going the same way we were and it made it worse.  I tried to be smart with my defensive driving but we were not getting there any quicker.  After dealing with half of all the commuters of 395 going our way, we got to the hospital 15 min after our appointment.  Not too bad but we were not through the day yet.  Jasmine's GFR (kidney check with dye) consists of 4 visits in a matter of 2 hours. They inject the first visit and we return one hour later for a blood draw.  The last two times are blood draws a half hour apart.  Well for the life of me I couldn't remember what the time we had wait after injection but I remember the number of visits were 3 in total.  The tech told us "132".  David and I asked what it was again and the tech said "1:30 and 2".  I looked at the time on the clock before we left, it was 12:00pm.  We hung out in the cafeteria where Jasmine fell asleep while we tried to grab lunch.  I was sure something was off but didn't know what.  I was trying to stay awake myself holding Jasmine but it was getting difficult.  Jasmine's oncologist found us in the cafeteria and asked us when we had to be back.  David told her and she said we should go up to hem/onco clinc to get her labs drawn as a base line. We went up and did that along with her examination.  By the time we were done it was time to head back down to radiology for her blood draw.  When we arrived the tech said, we missed the first one.  David was mad and I was annoyed.  I went in with Jasmine and got her blood drawn.  He told us to come back at 2 and 2:30 now. We hung out at the cafeteria again agitated from  the miscommunication.  This process would inevitable start her chemo much later.  We had an appt at 9:30 and didn't get seen until 11:30.  When 2:30 came we went up to clinic to get checked in.  I took Jasmine to the art room while we waited for the final go from her doctor.  She played and her doctor found me to let me know what her counts were.  She found David in the waiting room and told him to get Jasmine admitted at admissions.  I texted him to let me know when he was done and I would walk over to our room number.  We met at the room and David handed over the admission papers to the floor nurse. Unfortunately we had a room but no bed yet.  The nurse was trying to work out those details and get Jasmine's fluids  together.  She set Jasmine up for pre hydration fluids which runs 2 hours.  Unfortunately until her ph was to standard we were not starting chemo.  The only way we would be able to tell that is if she pees.  Guess what wasn't happening?  Jasmine didn't pee until 7:30. Now we could get started with anti-nausea meds and then a half our later chemo.  Yes chemo started at 8:15pm.  After they pushed some of the drugs through her IV, we had to start the heaviest one. It runs for 3 hours.  
This is where it gets interesting.  I usually watch and wait until all the chemo has been administered and finished.  The nurse came in at about a little over an hour into it.  She came in with her eyes red and watered.  She said she was sorry but she had given her the last one running in half the time it normally ran.  I didn't know what to say or do.  I didn't want to freak out but her obvious distress told me it had taken a lot for her to walk through the door and tell me this.  It also told me this was serious.  She told me that they would infuse the rest at the regular rate and up the time and amount of her counteracting meds for this chemo drug.  I knew this drug affected the kidneys and heart rate.  I realized there was nothing I could do but accept what measures they were going to take to rectify the problem and pray. I was uneasy the rest of the stay and awaited any side effects. I watched her for as long as my eyes would allow me to.  I saw felt for her pulse and watched her breath.  I remember changing her diaper and not seeing any signs of blood throughout the night.  The next day I talked to the attending and nurse practitioner.  I asked them would there be any side effects to look for past the 24-48 hr mark. They said no.  We didn't leave the hospital until 8:30 and her post hydration was done.  We had to come back the next day for clinic and get her neulasta shot. 
We stayed at the new Ronald McDonald house in DC.  It was definitely much nicer than the old one.  We had our own bathroom and it felt like staying at the best western, except you clean house like it was your own.  I was glad because Jasmine was definitely under the weather.  She was more tired than usual and more withdrawn. I imagine the mistake from earlier had something to do with it.  We got up early the next morning and got started on laundry and cleaning duties.  We got up at 6am.  We were done with linens, cleaning our room and bathroom, and our coffee mugs.  I empty the dishwasher and started a new one. We checked out and were off. We got to clinic at 9 and were out by 10:30. We headed down 395 and I realized we would have to stop and get gas very soon.  We decided to stop at  Potomac mills and get gas and lunch for Jasmine.  Chic fil A is one of her favs.  Unfortunately we had come to find out that a double homicide had taken place earlier that morning there but didn't expect it to still be hopping with police.  The entire area was taped off and very busy with law enforcement officials. We ate somewhere else because she decided to take another nap.  
After getting home we, unpacked, started the wash, and got settled.  We stopped at Walmart for some quick need be groceries since David just got paid. Jasmine was up and walking around but not full of energy.  She went to bed after much coaxing and I got ready for work.  
Hence today, came around and David had to go meet with the school.  I rushed home literally quicker than usual to get home before a quarter to one.  David and Jasmine had just come back from having lunch at subway and got me something from DD next door.  He was outside blowing bubbles with her and we brought her in together.  He headed to the school to talk with her therapists and teacher. They decided on letting her get 30 minutes a week of therapy.  It was better than nothing. In the meantime, I had called to set up our SSI interview.  I hope that we can get this so we can get her medicaid.  Between the hospital bills and need for more one on one therapy, it would be really helpful this summer to get a teacher over here to help her work on speech with respite care. Only time will tell.  Jasmine's asleep now and David's working.  I'm off to finish filling out the rest of the demanded info for the interview.  I'm glad Monday won't require much thinking due to no patients.  Just grunt work, painting, cleaning, etc.  Awesome...because I'll probably be fried from my long to do list.  Such is life. 

Week 16-17

I am so excited!  I just noticed that Jasmine's eyelashes and eye brows are growing back.  Oh how I've missed them so.  She's always had the longest lashes and imagined she would never need mascara as she got older.  Mostly, I'm happy for the things your eyelashes do naturally.  I won't have to worry about the sun in her eyes as much.  It has mad her eyes so much more sensitive.  No more crusty sleep near the inside of her eyelids which is more difficult to wipe without rubbing the inside of her eye.  Lashes protected her eyes from the bath suds.  I can soon be rid of the looks from others as we go somewhere other than the hospital.  It kills me sometimes the way people view her.  Cancer doesn't come to mind when they first see her for some (the sheltered and self centered) they see an odd child.  I'm very much aware of my surroundings and Jasmine is too, so the fact that there are adults who snicker and make fun of my daughter from a distance is disturbing.  I watched a couple from a distance point and make fun.  I could hear them coming in our direction and heard snickering as they turned the corner. They contained themselves to not make it as obvious but as they got closer they sobered up from their high school behavior.  It was starting to register what they were laughing at. I realize my child looks different to others but I have no understanding for that kind of behavior from people my own age.  
Well on a different note, I'm applying for the SSI in hopes to get medicaid.  I'm starting to feel the panic of financial woe.  It scares me.  Its overwhelming.  Its coming so quickly and I thought it would be more spaced out.  Already we have found out that our insurance is for the birds but we are still glad to have it.  The new plan is crappy.  Our out of pocket has doubled regardless of what deductible you have.  We have already run into our first issue only 3 weeks in. Our co pay for Jasmine's Neulasta is 700.  That's 20% of the actual cost.  She supposed to get this every 3 weeks. It's only one shot but she needs to have it.  We could of course give her a shot everyday for the same cost.  Do we even want to think about torturing her with multiple shots when she's already been through enough?  Now we see the claims coming in for our responsibility coming in.  No bill yet but we know what to expect.  $4200 for our first bill this month. Lets see, we have until June until her chemo is over.  LOVELY!  Our out of pocket max is 10000.  At this rate we will reach this by next month. Woo hoo!  Am I worried? Yes.  Do I think we can get through this without losing our house? I hope.  I could really get into our financial business but lets just say like most American families these days, we have debt.  Debt upon debt just doesn't mesh well.  We pay our bills faithfully and try to pay it down.  Advice to others never underestimate the element of surprise or the unpredictable.  I hope that applying for this SSI and medicaid will help alleviate some of the long term financial stress. I thought last year was bad but this is a freaking nightmare.  
Its bad enough to worry about the treatment and how she handles it, whether her scans will continue to be negative, and ultimately her future.  I wish there was something out there like an easy button to dealing with cancer from every aspect and those affected by it. If there isn't a cure there should at least be that, right?  I'm trying to live a normal life or try to make it as normal as I can when we are not dealing with the treatment directly.  I can't help but think that I will regret trying to do everything as I have and more by sacrificing my time with Jasmine, if this does not end well. I feel like I should do my best and do things with her even more because I don't know what God's plan is for her.  I think back to the the weeks after we found out she had cancer and before we started treatment.  We went on family weekend vacation, just Jasmine, David and I.  We didn't do anything extravagant.  We stayed in state and just went to Williamsburg and walked the boardwalk along Virginia Beach.  We took her to the aquarium and even brought a packed lunch with us.  We didn't spend a lot because we stayed at a hotel for the night.  It was a vacation weekend 3 hours from home but I think about how happy we all were.  It was truly the best weekend ever and the happiest we had all been in a long time. It was Jasmine's first time to the beach.  I love the beach and I think that she did too.  I love her so much and.......
Her treatment went well last week the weather was the only thing I had not accounted for.  We ended chemo early enough to get her Neulasta but had to wait to give her the shot due to insurance policies.  We did have the option of staying at the Ronald McDonald house and getting the shot first thing in the morning, 8am.  They were calling for snow at rush hour and I thought we would be okay because it looked more like rain.  By the time we got the shot I hadn't looked out the window to see what was going on.  We headed down to the main floor and saw what the fuss was about.  Big mistake.  We got in the car and tried to go home.  It took us 3 hours to get down a stretch of 12 blocks maybe. What normally was a 10 minute drive even turned into 3 hours.  It was terrible.  We could not see out the front or the back of the car.  The snow picked up and so did the accidents and traffic.  People ran out of gas, their batteries went dead and people ditched their cars in the middle of HOV lanes on 395.  By the time we were in Dale City area, we stopped and stayed the night at hotel.  David's sister got us a room at the Best Western.  I couldn't be more grateful for her swift action.  The car was starting not do so well with the accumulation.  It was a lot and the roads had not been treated.  As much as I wanted to be home, I didn't want to risk our lives over it.  Other drivers were a little too anxious to get where they were going.  We ate vending machine food for dinner and had continental breakfast in the morning.  It would have been a treat but Jasmine was not feeling all that good.  Her medicine, which I'm glad I carried with me, did not go down so easy.  We slept well but late into the morning.  It took us 4 hours to get there and it was 10:30 before we even got settled in the hotel.  I didn't realize how tense I was that night until I got up.  My muscles were tired. We got home later that afternoon.  Never again will I underestimate the weather.  

Week 16: Sunday

David took Jasmine last Tuesday for her MRI of the brain and lab work.  Her doctor called me to tell us that her MRI was negative and her lab counts looked good. I unfortunately was not feeling so great on this day.  I started to come down with flu like symptoms.  When David was on his way back from the trip we met up at Walmart to grab a couple of things we needed.  I told David I wasn't feeling so hot.  I actually felt like I was going to get sick.  I had body aches earlier in the day but continued to work.  By the time we were pretty much done shopping, Jasmine was in a good mood but I was having a hard time pretending like I was okay.  I found David looking at some magazines and I told him I was leaving and checking out.  I told him I was feeling really bad and had to go now.  I took Jasmine with me and checked out.  By the time I was in the car driving down the 10 mile stretch, I could feel it coming.  I tried to keep it down and under control.  I managed to get her and the bags out of the car and in the house.  I darted for the bathroom and that was all she wrote.  The rest of the evening I felt miserable.  I wore a mask instantly to keep her from getting sick.  I got her settled and out of her coat.  I let the dogs out and went straight for the ginger ale.  When David came home, I told him what happened and I just threw in a movie and laid down. I threw in a pot pie I had just bought.  I ate that slowly and layed back down again.  He took care of Jasmine the rest of the evening.  I had to go to work the next day.  
The next morning I felt a little better but brought the ginger ale with me. All I wanted to do was get my job done and leave.  Nothing ever goes as planned though.  I finally left an hour later than usual and still was not able to accomplish all that had to be done.  
The rest of the week was just as miserable for many reasons.  Its bad enough when you are sick because you already feel drawn of all your energy.  It makes it virtually impossible to recoup when you have other sources sucking the energy from right under you.  I think I have become settled with the fact that I can no longer handle being superwoman at this point.  It is physically making me sick.  The worst part of it all is that I don't know how to solve it.  Everything is starting to pile up. The reality is starting to become so much clearer.  I guess what I'm looking for now is an escape.   I need to know that there is a silver lining in that cloud above me and that life will be what it once was for us.  Even if its just for a short time.  I'm speaking about this as if this is just me but I know that David has grown weary of our routine.  It's tiring because it something you will never get used to and don't want to.  This is the second job.  As for Jasmine, her body has been wiped  of everything time and time again.  She's not like most kids her age.  She doesn't know that having hair and playing pretend princess is fun.  She still can't talk and still working on potty training. She has no friends or little buddies to play with.  WE are here friends and play buddies.  There is something very wrong with this.  The whole picture is wrong.  I'm looking for the solutions to too many problems.  I've been trying to mask our problems by keeping my mind and body busy.  IT has finally caught up with me.  I've stopped blogging as much because I want to hide from the bitter reality and instead sunken my head into fictional books.  Reading has helped keep my mind from dealing with my reality. 
Well, on a lighter note, the school called and they will be setting up a teacher or therapist coming to help Jasmine at home.  They will call us on Tuesday to let us know what the schedule will be. Monday is work, Tuesday and Wednesday is chemo and hopefully be back to work by Thursday afternoon.  I'm still wearing a mask and will continue until my last symptom is gone.  I don't want to compromise her health or David's.  

Week 15: Sunday

Last Tuesday we were supposed to head up to DC for our chemo follow up and blood work. They emailed David the evening before to let us know they had managed to get us in for our awaited MRI of the brain.  Well, with the weather we and they were expecting, I figured there would be a cancellation or two.  David and I just argued back and forth about whether to go or not.  I thought it would be wise to cancel ahead and not play the guessing game.  This was after all just a quick check up and blood work.  The MRI was thrown in as after the fact.  I had hoped that the weather would either pass us with out much doing but the forecast was so not telling.  They were calling for ice and that's when I put my foot down.  If this was her chemo treatment then I would say that we go up the night before and get a hotel or stay at Ronald McDonald. Anyways, after much aggravation and upset, David cancelled.  There was no way we could have done so at 4:45 in the morning. 
Anyways, Jasmine has been feeling pretty good.  We kept her quarantined for the most part this week.  We did very little outside.  Many people are sick with the flu and I thought it would be best to keep her indoors until the 10 day Neulasta kicked in.  She has expressed many times that she wanted to go out.  She would take us to the door or bring shoes to us. We did go out once to get her blood work done and had dinner afterwards.  It turned out to be a not so nice day.  Jasmine fell asleep in the car and napped the whole way to the lab.  When we got to the lab, we didn't have a write up to give to the tech.  New laws in the state of Virginia that we could no longer use requests on file with PRN any longer.  Now we would have to bring a new one each time.  Go figure the one time we cancel and have to use the local lab for her ANC because we couldn't make the trip.  We had never cancelled an appointment yet but now the theoretical (hence the reason for the PRN)  was a reality. When she woke up during the fuss of trying to get a hold of a doctor or nurse from our team, she was have a bad meltdown.  She had woke up to early from her nap and that can be seriously ugly.  She had uncontrollable sobbing, screaming, and nearing hyperventilation.  When it was all settled out, I took Jasmine back while David was finishing up on the phone with her doctor.  I had never been back with Jasmine at the local lab.  I knew they could not access her port and had to draw blood at a normal site.  They knew her pretty well by now and tag teamed her.  The only difference was she was very upset.  With her free hand, Jasmine pounded it on the adjacent counter like an adult would slam their fist to emphasize their point.  She kept on and then when it was all over she continued.  When I told her it was all done and we could walk, she didn't walk.  She stomped and marched out still crying.  The tech said she was really mad today.  I agreed but thought it was funny and cute for moment.  She had never displayed such anger with this emphasize. She looked liked she should be giving an aerobic lesson with her knees coming up so high.  HA!  Its a site I will never forget. 
We got her to stop crying, part way through our drive.  We had to do two things, go to the dollar store for some carpet cleaner and then head off to dinner.  I grabbed what I needed from the dollar store and headed to Pizza Hut. 
When we got to Pizza Hut we got Jasmine milk for her drink.  After much fussing and distraction from us, her meal came and she wanted to it as hot as it was.  Of course, I stopped her because the last thing I wanted was to cause sores to start up her mouth.  The healing factor is slowed tremendously due to the chemo.  So I cut up her personal pizza a little more.  In the meantime, she had been sucking down a milk.  When she started to eat she realized she was all out and picked my hand up mid meal and put it on the milk.  I grabbed it and realized it was empty.  I tried to explain to her but she kept throwing my hand on the empty carton.  She obviously wanted more but our waitress was no where to be found.  I tried to give her some of my soda because I didn't want the girl to choke on all that she had eaten. She tried it and that was all she would have of that.  She was so persistent about the milk until we flagged the waitress down and finally got her another.  My kid REALLY likes milk, what can I say?  I can at least say that she didn't give up on trying to communicate what she wanted. 
After dinner we headed home, we had definitely made a day of it and fulfilled her need to go out.  Next week we would have to go back to CNMC for her MRI and lab work.

Major Catch Up

Much has happened and where do I begin? HMMM?  
Okay, so we spent Christmas Eve and Day at the hospital.  It brought tears to my eyes at times.  I was slightly depressed but it all changed.  Jasmine had many visitors from people whom I've never met.  People had dropped off gifts and books for the children who had to stay during the holiday.  One group was from the American Cancer Society: The Madison Relay.  They came in and asked if Jasmine would like a bear.  I said she would and they presented the bear to her.  She grabbed it questioningly.  They asked if she could get a picture of Jasmine holding the bear with them.  I okayed it and Jasmine hugged the woman.  It instantly brought tears to my eyes. The other girl showed off her hat to Jasmine.  It was a hat that was very animated and lite up.  Jasmine was amazed and thrilled.  I thanked them as they proceeded to leave.  Jasmine threw a fit and started crying.  I wish I didn't cry because maybe she wouldn't have.  They felt bad about leaving too.  The next was the nurse delivering a box full of all sorts of things.  Coloring books, socks, a brand new stuffed animal of Tigger, and a puzzle.  Of course Christmas morning came around and the night nurse told me that Santa usually flies in and delivers gifts.  He did come and deliver a whole new set of toys all wrapped.  I could not believe how much she got.  I expected one gift of all the ones he was holding but not the load he dropped on her bed.  I took a picture with my phone after I woke up from my aww shock.  As he hurriedly posed, I snapped the shot, shut the phone and forgot to save.  Either way, I'll never forget it and I know Jasmine was content throughout the day.  We received some excellent news about going home a little bit later.  David came and I told him the good news of being able to go home that afternoon.  It turned out that we actually left in the evening but it was worth it.  
It had started to snow but we had been through this number before.  We just drove slow.  When we got home we opened some of her presents, all except one.  The dollhouse would have to be saved for the next day. There was way to much to try to put together for that evening.  
Sunday came and I put the house together. It was a lot with very little directions to add to the situation. Poor David wasn't feeling well and he tried his best to keep clear of her.  If he was home, Jasmine was going to want both our attention.  He printed me out a large picture of it and I had to rely on my instinct. It was great.  When we brought the house into her room, she was thrilled.  David and her played while I took pictures.  I was glad to have gotten it for her.  It was a winner.  This girl had more toys than we would have ever imagined for her Christmas.  


This takes me to week 13.  This past week was different because we got home a little earlier and they have started to drop some of her chemo drugs and lowered the amount from her regimen. This was kind of the real hump of her treatment. We still have the full 36 weeks which ends in June. I claimed to have been at the halfway mark much earlier.  Apparently, my math is very off and it still is.  However, this is a big deal even if I can't claim it still being the halfway mark in her treatment.   This means technically, we would have one less day of chemo.  Unfortunately, Jasmine had decided to put a wrench in it when most of the time its because of some hospital schedule issues. She decided to hold her urine and not put anything out during prehydration.  I couldn't believe she did it again.  Why couldn't she do this at home?  She's so capable of being potty trained.  It was absolutely ridiculous.  We waited and waited....and waited..... Dear God, it took her til 10:30pm to let loose.  Now we could start chemo.  The day had passed but this means we would be leaving either very late the next day or the morning of the next.  
The chemo went well but she was in a bad mood most of her stay.  She was very irritable.  I know she was frustrated with having to be there and go through this but you would think she would be used to it.  She had officially lost all existing hair from her head, eyebrows and had few remaining lashes.  Her skin had gone through the changes and her entire body knew it, so why the fuss?  It was going to be a shorter stay that she unknowingly turned into a regular stay.  I wish she could understand.  She understood when it was time for us to leave and go to the art room.  She was always up for a trip down the hall, to the playroom, art room, etc.  The minute we got back to the doorway of her room she would breakdown.  The nausea medicine did wonders as long as we could keep her from smelling or looking at food. The food cart would always be there when the art room was going to shutdown for lunch.  The smell would engulf the whole floor.  UGH!  So gross.  I will never understand why they put a cart of smelly food on a floor full of chemo patients not wanting to eat in general.  If they did eat, it was minimal because they knew what it would set off sickness. Anyways, it was always a time that we had to go down the hall.  We prayed every time we left the art room.  First for no meltdowns when we scooted her out the door and the second for not getting sick.  This time she voluntarily walked out on her own.   That was a first. As they day progressed she got more upset with everything and my head was pounding.  The pain was sort of unbearable at times.  I felt like my vision was not so great either.  Her meltdowns were not helping the matter.  
When we left and got home, I felt terrible and she was full of energy.  I took some more tylenol and slept until I couldn't sleep anymore.  I had the opportunity to go to work for a bit but opted to take care of myself.  Either way my vision seemed to be a little shotty, so driving was not a good idea.  I actually should have let David take over the driving but I'm stubborn.  I wonder where Jasmine gets that from? :)  Jasmines mood was still off but she was home and she knew that.  
The next day, things were back to normal.  I was getting ready for work feeling much better and she ate her normal stuff and took her nasty medicine well.  I worked my half a day and did some quick grocery shopping to get us through the weekend and part of the week.  
Today, Jasmine has been super full of energy as usual.  She has also managed to get into a lot more.  She playing differently and learning how to do things that she shouldn't do.  She has learned how to: open the oven, take my pot holder, figured out most electronics in the house (computer, David's DS, cellphones, VHS, DVD, remotes) and lets not forget how to empty all the clothing drawers in the house.  She's learning to mock and imitate...this one just really gets me.  In fact it amazes me.  It seems like the moments I've been waiting for have finally arrived. She wants to actively participate and for us to be included in her setups. She's growing and developing again.  She's getting older and her understand for somethings has taken off. I took her out after we played with her new ice cream playdoh machine, to get some real ice cream. What a hoot?! I tell her we are going to get some ice cream with rainbow sprinkles on it and she's ecstatic. She's flailing her arms and hands with a big old grin her face. I'm happy that she is happy but know this a long way to go for just a cup of ice cream.  20 miles for a cup of ice cream that she can picture.  I get her shoes on and she waits for me to put mine on.  I got to get her coat and she knows we are going out.  She does not fuss but help me instead to put her coat on.  We head out and on the road, the whole time I'm talking about the ice cream and I look back to always see a smile.  I get to the exit and I turn around to find a sleeping Jasmine. GREAT!  Well, I park the car to an empty parking lot as I expected on a VERY cold evening.    I get Jasmine out of her car seat and tell her we are going in to get the ice cream with sprinkles. She awakens and she notices the picture on the window of a ice cream cone. When we go in, a teenage boy and girl come to the counter with big smiles.  I order a small cup and get a heaping lot of ice cream on a cone. He asks me what kind of sprinkles and I told him rainbow.  Jasmine watched everything from the ice cream coming out to the sprinkles  being added with such attention.  Shes flails her arms and hands, grins with excitement.  In my head the music plays, "I"m so excited and I just can't hide it, I'm about to lose control and I think I like it," (Pointer Sisters). This was a great idea. The music in my head pics up with "La,la la,la,la...la,la,la,la,...." a part of,"Loving You" by Minnie Ripperton.   We go to sit down at a small table in the corner.  I let her have the first bite.  She had some and then I can see how quickly it starts to melt. I go to give her a second go at it and she starts crying.  I can't even get her to sit in the chair without falling over.  Crap!  I'm stuck eating this more than what I wanted ice cream.  As a matter of fact I didn't even want ice cream.  Wasted gas, an overpriced ice cream, a screaming child and YES an additional butt.  What more could a woman ask for?  At least I got a couple of really good smiles.  The things we do as parents.  


Well to close this long update, I'll say that I'm grateful that she has taken this chemo as long as she has so well.  I am thankful that her scans are coming back negative.  I'm grateful to all those who have donated to Amanda's Marathon Run (Jasmine being her cause), supported us, helped us, and prayed for us.  I know we are still heading down the road and its not over yet, but its the close of a year that we will never forget.  Both for its positivity and negativity, we  are hopeful coming into the next because of the love and support of others around us, near and far. 
Next long treatment, we start the genetic testing.  David and I will get our blood drawn, be counseled in a few weeks and in a month have a complete work up.  From CT, MRI, and physical.  We hope to help find answers to the reason why Jasmine has come to have this cancer as well as others. 

Week 11: Friday

Its Christmas eve and we get to spend it at UVA.  Yesterday Jasmine developed a fever early into the day.  We called Children's in DC and they told us to get her to the local ER.  With me getting over a cold, I knew I was part of the problem.  We got the call Wednesday to let us know her labs showed she was neutrapenic.  Once they told us this, all plans were canceled to leave home.  We were planning things for everyday and even Christmas Day.  We know that plans change like the weather.  Especially for us.  Our life lesson particularly focuses on this.  It's never easy to swallow but at least we were local. D 
I went home last night because I figured I would have to stay Friday evening for sure. David stayed with the her overnight.  I was still sick and now the constant mask wearing was not helping.  At home I could get away with using it when I was close to her.  Here I have to wear it all the time because I'm confined in a room with her.  David has to go into work today but was off for Christmas day.  Our first time home together with Jasmine on a non treatment week. At least that was what I thought.  I should tell myself not to think because its just a disappointment.  I had really hoped that this one time we could celebrate this major holiday with people.  
Sometimes I think we crave socialization and other times we are so tired we could care less.  I know that for sure of myself.  I feel like I have parted from the world on a social level and have condemned myself even at times when I didn't need to.  I worry even when David wants to let someone watch Jasmine for a little while so we can go do something together.  I don't know how to let go of her because she is on my mind constantly. Its a sick feeling.  My whole world revolves around Jasmine.  I don't mean this in a bad way.  She is my life. I would make all and ever sacrifice necessary to do for her what ever she may need.  I love spending time with her and wish I had more time. In fact I wish I could afford to be the stay at home mom sometimes.  I'm jealous of the days that David gets to have with her and always have been.  The school trips, the during the week events that I see advertised, I wish I could have been there.  At the same time, I have to work and I know we need two incomes.  Reality speaks louder to me now than it ever did.  


So that was Christmas Eve. I wasn't exactly cheerful.   I couldn't post because I didn't have internet at home.  And had not had a decent speed to even view or log in.  

Week 10

It has been a while since I have written.  There is much to catch up on.  Over the course of these last two weeks.  Jasmine has been in good health for the most part.  Her counts are good and she is do for another long treatment this week.  Last week David brought her to a local lab for her blood draw.  The weeks we don't go for treatment we go for local blood draws to check on her counts.  Its a relief to know that we don't have to do the extended travel with her or even have to get a small chemo treatment in between.  It seems like things are looking up in that department.  I have noticed one other thing about the chemo side effects.  Now that her peeling is calming down I noticed that she is bruising so easily.  Every bump looks like serious trauma.  Her legs are covered in marks.  Her shins have black and blues, and most recently her head.  I walk around with her and I definitely have not been getting the mother of the year look.  They stare at her in general and then scrutinize the bruises.  Its super special when she goes into a full fledged tantrum, which has been more going on more often. With us not being able to catch her "fall outs", as we like to call, them doesn't help with the prevention of injury.  However, this is the life of a three year old at their best.  Kicking, screaming and throwing herself on the floor like the world is coming to an end.  Sometimes David and I have just watched her and let her do her thing for a good 5 minutes.  When it was all over and she realized no one was going to come and stop her, comfort her, or pay attention, she came back smiling as if nothing happened.  Weird....I'll never understand it.  
Then of course there has been the series of events that have led us to our present situation. The deck starts to fall apart in the back of the house and David and I began to argue about that.  We finished adding a couple of more yards to the dog fence and argued about that and the deck.  I threw a couple of more nails into the railings that were falling out.  We talked about having to replace it sometime next year but it started to come apart before the winter.  Maintenance waits for no one was the point of my argument.  You can't expect the house to take care of you if you don't take care of it.  Speaking of maintenance...I have put all that I have to help maintain my vehicle.  I had to put it in the shop for repairs for hoses, leaks, etc.  This has to be the second major thing in the last 3 months.  So I traded the good old Santa Fe for a used civic.  I got a good deal on my trade in.  I didn't even think I would get that much for it but I did.  Unfortunately, life happens and now I have a car payment again.  In this same window of getting the Santa Fe back from repairs, David's car unexpectedly has to go the shop as well.  His was just as bad as mine.   The cars are old and we knew were buying time. At least now we have one reliable vehicle.  I lost my 4wd for a more reliable, non gas guzzling vehicle. This was what I was looking for.  It was hard to give up my dream car for the civic.  Yes!....don't make fun....The Santa Fe was my dream car.  It was the car I wanted, set out to get and I got it.  I know better than to set the bar out of my range of reach.  Thanks to some 17 year old kid who wasn't paying attention and slammed into my ford escort, I got it. 
Now, to put the icing on the cake.  One of dogs needs to go the vet for emergent visit.  He's limping and not acting right.  I think he might have torn a ligament, or might even have a herniated disc.  Can we say surgery?    I hope that this is not the case put am doubtful that it is just a sprain.  It has been a couple of days now and I thought it would have healed some by now.  No luck.   David will have to take him to the vet if I can get him in.  It's not his most favorite task but I think he knows that he is hurt pretty bad.  


Later in the week...
The dog checked out fine.  Thank God. He's 9 now and he's no spring chicken.  He's slightly overweight and playing with an energetic 10yr dog full of muscle.  I wish I could tell them to chill out but it would only last but so long.  
Jasmine's treatment went so much better. She was happy going to clinic and was very chatty. It wasn't until lunch time that she began getting fussy.  We had been there the whole day and waiting for Jasmine to be sedated for her CT. As it turns out, anesthesia didn't have her on their schedule.  They were going to try to get us squeezed in but that would postpone our chemo time.  With this in mind, I asked if they could use a papoose to hold her but realized her arms would have to be up and out of it for the CT of her chest.  The child life specialist came by with pictures of the CT machine, a coloring book about it and even a lego model of the machine with a lego guy laying in it.  I explained to her that Jasmine is autistic and doesn't process things in the same way.  I can't just tell her, "Oh Jasmine look at these pictures of this machine.  Do you want to try? There is nothing to be afraid of".  I would be luck to get the one on one contact to even get her attention.  She said they have something new that might work.  They had a puffer blanket.  It was an air filled blanket that conformed to the body and would work almost the same.  I decided this would probably work fine and she suggested the DVD player also.  I had a good feeling about this.  When she went in she was already absorbed by her Dora DVD and we got her shirt off without disturbing her focus.  We layed her on the blanket and kept the DVD in her face the whole time.  When she went in I held her hands on the DVD player and it worked.  She never fussed once.  This whole process put us ahead of schedule. Awesome!...no exactly.  Unfortunately they weren't ready for us upstairs  on the floor.  They managed to get us a room in a decent amount of time but the  problem turned out to be Jasmine's bladder.  Because she was NPO for the sedation that never happened, she had no urine output.  Even after prehydration fluid were administered by IV, she still was very slow with the output.  We didn't start her chemo until 10:30 pm.  She refused to drink or eat her favorite things even at lunch so there was nothing we could have done to help this.  We just had to let things take their course.  
We decided to try a new anti nausea medicine used on transplant patients but just started to be used with chemo patients.  We were hoping that this was going to be the one.  It worked beautifully.  We were so relieved and wish we had started this weeks ago.  This was what they called a last and final alternative.  At least now we could control her sickness better.  Jasmine still refused to eat or drink anything but that was okay.  We had IV fluid for now and would make up for lost time at home.  Jasmine was able to walk around for most of her treatment.  We took her to the art room to do some art but she started playing with their cool toys.  She played with the new dollhouse they got. ;)  So nice to know.  We tried some craft projects but she was more into finding the scissors on the table.  Nothing slows this girl down or her eyes. We were chasing her with the IV pole all around the room.  We definitely needed a longer line at her rate. They had a non profit organization called Flashes of Hope there to take pictures of cancer patients.  They were giving us a photo session, a bunch of photo prints and a CD of all the images for free.  I thought way not.  We took her down and she was thrilled to get out of the room again.  She was very shy and its really hard to make her smile while she's there.  She's all smiles when we have her coat on and she knows we are leaving.  I don't blame her but the session went okay.  It was slow going at first but then she managed to crack a smile every now and then.  Priceless.  So in 2 months we would have photos of what was almost the half way mark in Jasmine's treatment.  
Upon completion of her chemo, we had the drive ahead of us.  It had snowed 1-2 inches in DC and had been 3-5 in at home.  The temperature was supposed to drop into the teens again. They tried to push her chemo up a couple of hours to help us get out Thursday evening instead of Friday morning.  Jasmine's oncologist tried to see if they would let us out a couple of hours earlier than 7:30.  She got turned down by the pharmacy but suggested for next time for them to show us how to administer her neulasta shot.  Next time we would just be able to leave earlier.  Things seemed to be getting better and better with each visit now.  All we had to worry about at this point was the weather. We took it slow on our way out because it was icy out.   DC doesn't do such a great job with treating the roads or clearing it.  I was glad we on our way out of DC because it was easier to get to the highway from the hospital.  It seemed a lot longer to get to the hospital within the city.  We got to the highway and I irritated those around me with my 55 miles an hour in a 65-70 mph zone.  Oh well, I wanted to see tomorrow and wanted my family to also.  Surprisingly enough it took us about 4 hours to get home and we didn't really encounter any problems until we got about 10 miles from home.   As I took it slow on the off ramp of our exit, the light had just turned green.  I knew it would probably change by the time I got to it as it always did, but it didn't.  I kept my speed steady all the way and was getting ready to turn when someone was about to blow the red light.  I saw from the corner of my eye that they were coming fast and I broke.  They broke shortly after I did but were way over the line.  Luckily, there was no ice for either one of us and glad I kept my speed slow and steady up the ramp.  The rest of the trip was uneventful and pretty clear until we had to turn off the main road and onto our road.  VDOT was sitting at the corner there. The road had not been plowed or treated.  I proceeded because it didn't look like there were going that way at all.  I started up at 15 miles and hour on a up slope. We crept all the way up and low and behold VDOT decided to come up from behind us. Idiots.  But wait, they most have turned off and realized this was a secondary road because they were no longer behind me.  Must have been a newbie. Damn!  We made it in the driveway fine.  Home at last. 
However, getting out to work in the morning was going to be a challenge. And it so was. I made it down the driveway and got to the end when the car wouldn't get onto the road all the way.  I was stuck on the driveway and into oncoming traffic.  I put it in reverse and got it back on the driveway.  Trucks passing me by just kind of looked at me and laughed. HAHA, yes I'm attempting to get out I thought.  I'd like to see them try.  After several tries, I got myself on the road with a slide across it.  I kept it slow and realized the road still had not been touched.  Going down the slope was going to be my biggest challenge.  I kept my foot lightly on the break before it went down.  I did it.  No fish tailing, no accidents, I knew the rest of the trip would be easy.  
As expected, Jasmine came home and made up for lost time.  She ate breakfast as usual and was super social and smiley all day.  She's amazing.  I wish the doctors could see her the day after.  They probably wouldn't believe their eyes.