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.