Some Ups and Downs - Day 673

It is Polly here again...Jeff will update eventually, but right now he is too busy hopping around the house trying not to fall down and keeping Timmy from climbing his crutches :)

We continue to have a somewhat bumpy road, but as usual Ellie seems to take everything in stride and thankfully in the last week there have been more days with smiles.  

We had gotten spoiled over the last year of maintenance, for the most part Ellie's little body has done quite well.  On most weeks we were only having to go the hospital once a week and we had a pretty good routine going.  Last week we had 3 days at the hospital, and we are hoping for just 2 this week.  

Last week started with labs and a quick visit with her oncologist on Monday. The good news from last Monday's visit was the adenovirus had decreased significantly in her blood, and that the erythromycin seems to be a wonder drug for gastroparesis and has made her feel 100% better.  Also, her counts had come up enough for us to start her 6-MP back at 50% of her regular dose.  The bad news from the visit was that her oncologist wasn't comfortable leaving her on the erythromycin long term (more on that later).  

Last Thursday we went expecting her counts to be up to start the rest of her chemo...unfortunately her platelets had fallen below 50 so her chemo was again held.  They also did some clotting tests which were abnormal.  We were sent home expecting not to be back until today (Monday).  Then at about 8pm on Thursday night we received a phone call from her Nurse Practitioner (never a good sign when they call you after hours) and she let us know that there was a problem with her labs and we needed to come in first thing in the morning before going to school.  On a normal Friday this would only be a mere inconvenience, but this Friday, Timmy and Ellie's preschool had a field trip planned, a train ride that they were both SO looking forward to.  We arranged to meet the Nurse Practitioner early before the LPCH lab opened at the Stanford lab so we could hopefully get the labs done and still make it to the field trip.  Because the labs they were doing had to do with clotting and had been so abnormal, they decided she had to have them done in her arm not her port.  She knew this going into it because we put numbing cream aka "tickle cream" on her port when she is being accessed and this time we put it on her arms.  Unfortunately, she doesn't have great veins and we've had a lot of problems with the arm pokes in the ER visit so she was very nervous...but as usual she got through it and was so brave.  And we made it to the field trip in time so she got to ride the train with her classmates.  Upon arriving at the train station, she insisted on taking her sweatshirt off even though it was cold outside.  At first I didn't realize why, and then when she saw Timmy she stuck out her arm with the pink bandage on it and told him she did her labs in her arm...she was so proud of herself.  

Our weekend was relatively quiet.  And she and I made the trip back to the hospital this morning.  Again, I expected her counts to be up and to be resuming chemo but that wasn't the case.  She had to do another arm poke today as they are still checking her clotting, and this time there were no tears...she just sat on my lap and watched as they drew her blood.  When we first walked into the room, she looked to make sure they had the pink bandage with purple hearts and then she was ready to go.   There was another little boy who came into the room while she was getting her labs.  He is 6 or 7 and just went off treatment a few months ago.  When I saw his mom in the waiting room after the labs, she called me over and whispered how helpful it was for her son to see Ellie, someone a lot younger than him, be so brave with the arm poke and not cry.  

We waited for about an hour for her labs to result and meet with her oncologist.  First, we discussed the plan moving forward to take her off the erythromycin.  There are no studies on the interaction between erythromycin and the chemo she takes so long term they don't want her on it.  So, she will keep taking it for about another week and then we will go off of it and pray that her body can keep processing her food.  My understanding is that if she is going to get sick again with the gastroparesis it will happen within a couple of days.  

The other development from today's appointment was that her platelets fell again and today they were quite low.  During maintenance they have been somewhere between 150,000 and 200,000 and as of today they were down to 9,000.  They haven't been this low since frontline treatment.  So she needed a platelet transfusion today. First we had to wait for a room and then for the platelets to arrive.  Her doctor believes that this dip is a result of the same virus that had hit the rest of her counts last week.  

When she was diagnosed we knew what it was and her doctor laid out a course of 2 and a half years of treatment.  Was it a guarantee, no, not at all, but it was a plan and he knew what to do.  I think what has been so hard about the last 6 weeks is that there have been so many different things that have come up and they don't all have a diagnosis and a plan.  So, I wasn't surprised today when he said the dip in the platelets was due to a virus, though at times I think this is code for, we are not really sure what's causing this and the only real course is to wait and see if things change.  So for now, we wait until Thursday and hope and pray that the transfusion from today has held and her platelets are in a safer range.  

My father-in-law told me today that to donate platelets at the Red Cross it takes two hours.  To the person who donated Ellie's platelets today, thank you!! Without all the people who donate blood products we wouldn't be in the place we are today.

I leave you with two pictures from today.  The first one is her getting her platelet transfusion and the second one is her showing off her pink bandage from the arm poke.   Thank you everyone for continuing to keep Ellie in your thoughts and prayers.  

Finally Some Answers - Day 664

Polly here again...I know a lot of you miss Jeff's blogs and I'm confident he will be up to a long post soon :) but in the meantime I will try to give you a rundown of our 10 hour day at the hospital...

First, I want to say that Ellie is one of the most amazing 3 1/2 half year olds ever!! Yes, I am biased, but seriously what she went through today was no fun, and she wasn't feeling well, and she still did all of it with very minor protesting and an understanding that hopefully all the tests, doctors, and running around today would make her tummy feel better.

Yesterday (Thursday) Ellie had her normal labs and chemo scheduled.  I met with her oncologist and her labs came back and showed that she was neutropenic with an ANC of only 200.  It was decided that all chemo would be held and we would re-check her labs on Monday.  They also tested her blood for the adenovirus which they told me the results wouldn't be back for 48 hours (more on that shortly).

So today our morning started off with an 8:30 check in at Nuclear Medicine for a gastric emptying study.  Ellie had to be NPO (nothing to eat or drink) as of the night before.  We were instructed to bring egg beaters, 2 slices of white bread, and 2 tablespoons of jam which she happily packed this morning in her bright pink horse lunch box.  We had talked about the fact that this was going to be a long day and that she was going to eat food and we would get to see it in her tummy, which she thought sounded neat.

We arrived and they asked us to wait in the waiting room.  A few minutes later they called me back up and told me the insurance hadn't approved the gastric emptying study.  We have an HMO that thankfully generally approves necessary tests.  Well, it turns out the GI insurance coordinator forgot to send the approval off and they told me they couldn't start the study until they had the approval or I could pay $3,000.00 before they would start the test.  At this point, Ellie started to get really hungry and I was getting more and more upset with the situation.  I finally begged the guy to start the test and I would put it on my credit card if it wasn't straightened out by the time I left (the test is over 4 hours long).  Thankfully they took pity on us (after a 1 1/2 hour wait) and took us in and said they would continue to work on the insurance aspect.

So into the room we went and handed them our food.  They came back with the equivalent of 2 scrambled eggs with some radioactive something put in it and a piece of toast and the jam.  The tech said it would be great for her to eat all of it, but most adults can't so if she couldn't finish it that was okay.  Well, Ellie was hungry, she hadn't really wanted dinner the night before and it was now 10:00am and she ate it all down in 5 minutes.  And then the scan began.  She had to lay completely still for 30 minutes for the first scan.  The machine is similar looking to an MRI machine and the lower the top to within 6-8 inches above her head.  Thankfully they had a TV with videos she could watch.  After the first 30 minute scan we waited another 30 minutes and then they did another 5 minute scan.  Then it was 3 more 5 minute scans every hour for the next 3 hours.

Now, it would have been nice to relax during those in between times, but no thats not the way we do things.  We awoke this morning to an email from her primary oncologist that was sent in the middle of the night letting us know that she had tested positive for the adenovirus and that the amount in her blood was moderately high and we needed to be seen by the infectious disease docs today too.  Her stool had tested positive for adenovirus over the weekend, but when we spoke with oncology on Monday they weren't concerned because this is a common virus and it sheds in your stool for up to 18 months after having it.

So, we first had to rush down from Nuclear Medicine which is in the adult part of the hospital back to LPCH (about a 7-10 min walk) and try to get a chest x-ray done because the adenovirus can cause respiratory issues (though she hasn't had those symptoms).  Of course, we show up at radiology and the x-ray machine was down.  So back to Nuclear Medicine for the next scan, and then back to x-ray again for the chest x-ray.  Then back to Nuclear Medicine for another scan and then we went to clinic to meet with the Infectious Disease doctors.

Both Jeff and I were highly impressed with the infectious disease doctors who had great bedside manner and seemed to really know their stuff.  There is a medication they can give to help with adenovirus but the side effects can be quite significant.  You have to be admitted for the medication, and it has to be given with fluids and additional meds that protect the kidneys because it can cause damage to the kidneys.  After going through all of the options, all of her doctors (oncology, GI, and infectious disease) are in agreement that we are going to wait and see if the amount in her blood is trending down on Monday when we get labs done again.  So our next question was whether or not all of her pain and vomiting is from the adenovirus or something else.

So, back we went for the final scan.  They had told us initially that the test could be as quick as 2 hours or as long as 4.  At the 2 hour mark they said she would be there for the full four hours based on how she was progressing.  So, we got the last scan in, stopped at the cafeteria to get some food to go (by now it was 3pm) and all she had to eat was the egg beaters and toast, and we were off to meet with her GI doc.  GI is across the street from the hospital so we definitely were getting our exercise today.  Thankfully I had thrown the stroller in the car this morning, which we almost never use, and Jeff had his knee walker.

After a long wait for the GI doc (we had missed our scheduled appointment due to the test running so long because of the insurance mishap) we met with her GI doc.  And he had the results of her gastric emptying scan...at hour 4 she still had over 50% of the radioactive eggs in her little body.  He said that over 50% of the food should have been cleared by the end of hour 1!  The name for this condition is gastroparesis.  So, somewhat of a sigh of relief as now her doctors are fairly confident that this is what has been causing her to throw up, have so much stomach pain, and caused her counts to drop this week.  While they said it won't get better overnight, there are meds they can give her to help her gut motility.  The first one we will try is the safest, it is a low dose of erythromycin.  They said it could take as long as 9 months for her gut to be back to normal, but in many cases that time is a lot shorter.  They also are not sure what part of the equation the adenovirus is playing in her feeling unwell, so we will hopefully have a better idea on that next week as she will be getting likely several sets of labs.

By the time we left the hospital it was almost 6 pm.  All day Ellie had been telling me when she was done with her scans she wanted a brioche roll from a bakery nearby, to take chocolate sprinkles cupcakes home for her and Timmy, and to ride the mechanical horse at the shopping center across the street.  Of course, despite being exhausted, I couldn't say no and across the street we went for the roll, the cupcakes, and the small metal horse ride.

When everything started to go wrong with the insurance this morning, Jeff was able to find someone to teach his classes and come to the hospital with us and I was so thankful he was there!! He is my support and rock and made it possible to get through this day.  We are hopeful this new plan will bring comfort and relief from pain soon for Ellie.  We thank everyone who has been praying for us and supporting us with meals for the last couple of weeks.  I will leave you with two pictures.  One is Ellie during one of her scans and the other is her riding the mechanical horse.

Polly

Still Looking For Answers...Day 662

Another update by Polly...

I write this with continued frustration and fear as things don't seem to be improving for our El-Belle.  We stayed the course with the laxatives last week and cleared her out as best as we could.  While she did have some smiles, she also has continued to have a lot of time not feeling good at all.  Unfortunately her vomiting has increased over the last several days to 2-3 times per 24 hour period.  The nausea meds don't seem to make a difference for her.  Thankfully she generally gets a good hour after throwing up where she seems to feel okay, but then she slowly goes back to her stomach hurting and being very uncomfortable.

So far, we've tried the mass laxatives, some of which she is still on and they have now increased the acid reflux medicine to a stronger one, though that isn't helping yet.  I have spoke with the GI doctor everyday this week and finally today she told me they are thinking she might have post viral gastroparesis, which is basically delayed gastric emptying.  The have decided to have her do a gastric acid scintigraphy study on Friday morning over at the adult hospital.  Basically she will eat radioactive meal of eggs and white bread and then they will evaluate how quickly these are moving through her body at 30 minute intervals.  From our understanding, there are no real protocols for this study in children, which is why we have to go over to the adult hospital.  If this is what she has, the doctor warned us that it can take several months to improve.  They will start motility drugs to hopefully help her body start moving food through it.

We go in tomorrow for labs, chemo if she makes counts, and to touch base with her primary oncologist who has not been very involved up to this point.  I have gotten several questions from friends asking if her throwing up could be from the chemo she is on, and none of her doctors think that is the case.  Some chemotherapy is known for causing nausea, however, she had been on these same drugs almost exactly one year when this started to happen.  Also, the nausea meds usually help to control when the nausea is related to chemo and in her case they don't seem to help at all.

So that's where things stand.  Jeff continues to recuperate and work on getting around with his crutches and knee walker which he is already tired of.  We hope to possibly at least have a new plan by Friday afternoon when we meet with her GI doc and get the results of the study.  In the meantime if you could please pray for our little Ellie, that her body can have a break from all of this, and that her counts continue to remain high enough to get her chemotherapy tomorrow.

Polly

A Quick Update - Day 656

From Ellie and Timmy's Momma...

We want to thank everyone who has helped out or offered to help this week.  I wanted to give a quick update on how things have gone this week.  On Monday we were initially told by the oncology department that they didn't think we really needed the referral to GI, but I wasn't really willing to take no for an answer and thankfully we were able to get Ellie an ultrasound on Tuesday morning and we met with the GI docs on Tuesday afternoon.  Basically, based on her past two weeks of x-rays from the ER and the ultrasound their theory is that her throwing up and stomach pain was due to the large amount of stool that was backed up in her intestine.  She had been having bowel movements but not enough to get things going.  So thankfully, by the end of our appointment Tuesday we had a plan - we needed to clear out her system using very strong laxatives and hope and pray she didn't continue to throw up.  We are now two full days into the plan and so far so good.  That's not to say she hasn't had some hard times due to the cramping with everything going out, but we are hopeful everything is going in the right direction.  And the best part is we have seen glimpses of our old El-Belle back in action.  She is playing with Timmy again for large portions of the day and last night she and Timmy, who have these low bunk beds, sat and talked up a storm for 45 minutes before finally falling asleep.  Normally, we don't let these conversations carry on, but it had been so long since we had heard them carry on after bedtime that we just couldn't break it up. 

She did go in for her weekly labs and chemo today.  Her counts have fallen quite a lot, especially considering she was coming off of a steroid pulse which usually raises her counts, but she was cleared to get chemo today and we are going to hope things are higher again next week.  When I asked, what they thought about the drop in labs the response was "well it's probably a virus." I really had to bite my tongue to not say something back to that line, which we've been fed for the last 4 weeks regarding her other problems!  Assuming she has a good night tonight, she will go back to school tomorrow which both she and Timmy and very excited about.  

Because our life isn't hectic enough right now, Jeff who injured his foot about a month ago playing soccer, received a phone call last night from his podiatrist with the results of his CT scan saying that he needs to have surgery done on his foot.  It turns out he has 3 fractures in his foot, one larger one and 2 smaller ones in the navicular bone and the larger one goes into the joint.  So tomorrow (Friday) I will be taking him in for his surgery which they said needed to be done ASAP.  The hardest thing is that he will be required to be on crutches for 6 weeks.  So, if you all could please keep Jeff in your prayers tomorrow for a successful surgery and speedy recovery we would appreciate it.  

Finally, if you could all say a prayer for my Grandma Betty, her husband of 21 years, my step-Grandfather Denny passed away.  He was approaching his 100th birthday next month, so it wasn't unexpected but still very hard to lose a loved one.  

I will end with a picture from Timmy and Ellie's "dance performance" from a about a month ago before the craziness of the last month began...we know she will be back to dancing soon. 

Polly

LightBuzz - Day 652

We have had a helluva last 24 hours.  All the progress made through last week in terms of Ellie getting over this seemingly endless stomach bug was lost as of Friday and we were back to square one....frustrated and worried one notch higher each time we are sent back there.  For weeks now (WEEKS), the docs have been telling us these are just normal viruses working on a compromised immune system.  I just don't buy this "she may be sick for a month" theory.  We were doing our best to soak it in with a good deal of blind faith last Monday as the Doc was telling us about it following our Sunday evening 5.5 hour ER visit.  My gut tells me something different here and it has with Polly since she first started throwing up now almost 4 weeks ago.

Days like today have not happened since Delayed Intensification a year ago January.  What is interesting about the human reaction, as I have observed, is when problems are compounding quickly over a period of only hours, we (or at least Polly and I) go into this basic survival mode.  In the moment, there are basic things that need to get done, there is no time to speculate on what could be nor waste time with small talk (doing our best to not be rude, of course), we will seek whatever information is necessary, and we will contain the emotion until an outlet presents itself so not to affect Ellie.  If you do not take care of right NOW, what is the point of talking about tomorrow when the current fray is a step beyond frantic?

Polly and I had rare dinner plans last night without the kids and were on our way just after 6pm.  Polly's parents had come to pick them up and take them to dinner, so we were free for a few hours.  Flashback to earlier in the week, after Ellie received hydration Monday and Wednesday, her upset stomach was better but she still lacked the energy missing from her normal spunky self as has been the case for the last few weeks.  She had been eating a little better giving us hope this was all coming to a close and had only had one queasy moment since our night in the ER.  And then the more regular vomiting started again on Friday, this time with excruciating screaming in the process.  She woke on Saturday morning happier again and willing to go out with Polly to the barn to try riding a bit but what begins as a pleasant morning now typically turns after a few hours.  She gets very quiet, starts to cling, then refuses to be touched by anyone, lays on the first flat surface she can find and doesn't want to move.  A nap helped a bit and then it was off with Polly's parents for the evening.

We hadn't been at the restaurant longer than 20 minutes when Polly's mom called and told us to come home.  Ellie was not the issue though.  Polly's Dad had fell very ill all of a sudden and a decision was made to take him to the ER.  After we raced back, Polly and her mom went to the ER and I took the kids home with Ellie looking greener by the minute.  While getting both kids ready for bed, Ellie went into her floor isolation mode, though I was able to coax her up to the couch.  The next 10 minutes was a combination of her moaning/pointing at her stomach while Timmy found multiple things to knock over/pull down simultaneously to just create the most wonderful scene of chaotic noise you could imagine in one living room.  Mickey Mouse On Demand calmed things down to a dull roar and at least priorities could be made.  Ellie needed her nightly chemo pill.  How to get a small white disc, that incidentally is toxic to many parts of her body, into a screaming child who doesn't want to be touched....a dilemma I can smile a bit about now but don't find the least bit amusing.  There is nothing to prepare you for things like this.  Polly was able to come home having gotten her Dad in the ER cue (which by the way was a packed house for a Saturday night - of course it was, would you expect any different in this story?).  In the time it took for Polly to get from Stanford to our house (about 15 min), Ellie had poured out the entire contents of her stomach in our bathroom.  I know this is tough to read.  It is tough to write.  I hate cancer with every living cell in my body.  Thankfully I hadn't given her the chemo pill yet, which she took a little while later after Polly had gotten home and things calmed down a bit.  Fearing dehydration and with knowledge that she hadn't peed since the early morning, the oncologist told us to go to the ER.  By 10pm, Ellie was checked into a Stanford ER room about 50-60 paces down the hall from her grandfather, in a room of his own.

I owe a big THANKYOU to my colleague and friend, Jen, who came over late to hang on the couch while Timmy slept, so I could head to the ER and help where possible.  Both Polly and I know there were many others out there who would have done the same.  That means the world to us.  Thanks to Jen and to the rest of you who flooded us with offers earlier today (Sunday).  With much respect for my father-in-law's privacy, I will say that after 20 hours in the ER and many tests that all came back negative, he is resting at home now and doing much better.  Even in his own time of need, he was asking about Ellie which even by my mentioning doesn't even do justice to the size of his heart when it comes to thinking of his family before himself.

The ER attending doc the second time around (in 7 days) was much more in tune with the oncology world this time. (Thankful!) It was obvious Ellie needed fluids and those were started into her port fairly quickly once we got to the room.  Her stomach X-ray was clear and her labs came back as they have all week, in the expected normal-for-her range. You should know there is never a normal lab report I do not love to see.  It is never a given and it will never be taken for granted.  When those white blood cell numbers are in the range we hope they should be, you say a prayer of thanksgiving and find time in the not so distant future to pay something forward.  There isn't a choice in the matter.  It is a duty.

The doc sat down for a good 15-20 minutes with us to talk about possibilities for this stomach ailment.  A conversation we sort of started last Monday following our Easter ER trip with our regular Doc but still were told a wait n' see approach was best.  We finally had a G.I. troubles discussion and where various things could be going wrong.  One thing was coming clear, it is time we had gastro specialist come into the mix which we will try to do tomorrow.  Ellie fell asleep after she got her fluids and was at peace for the first time since the morning.  We accomplished getting her chemo pill into her system and ceased the vomiting with an additional dose of Zofran (nausea med).  We knew this ER trip was mainly for hydration purposes, so at long last by 2am it was time to go home.

Polly and I got about 4 hours of sleep until the Timmy Alarm went off and both kids were up early this morning.  Ellie was doing OK but the same pattern with lack of energy was still going on.  Again.  She ate a little but spent most of today on the couch not moving.  She was able to go to the bathroom a few times which was reassuring but her stomach pain increased again.  I took Timmy to the park to blow off some energy with another friend, got both kids down for a little nap, and then it was time to get Polly's parents home from the ER.  Ellie's uneasiness was starting to grow again as the afternoon wore on and her usual stoic self was giving way to a very painful cry.  If you recall, this is also her monthly steroid weekend which could not have come at a worse time.  On a good day, she is still irritable with Prednisone running through her veins.  Having to be "On" now for close to 16 hours (minus 4 hours of sleep in between) was and still is taking its toll for the both of us.  Trusting our gut that something was still wrong we made another call to the Doc at about 4pm this afternoon.  She wanted to try something new to help.  This is where the power of prayer has come to be an incredible force that shows itself at opportune times for us.  I get a little weary of putting out notifications to the facebook world about how Ellie is doing as if our problems are more important than anyone else.  But I also know that the army of people willing to stand with Ellie in a space and time proper for their own world of thoughts helps her even if just by a little bit.  I believe that.  Every little bit helps.  I will be thanking you in my own way when she it makes to to Monday and I will be thanking you even more when she blows out the candles on her 10th birthday cake.

Back to the Doc's suggestion...there is a somewhat lesser seen side effect possible from Prednisone which is acid reflux.  We have not seen anything of the sort in over a year on Prednisone.  It could even be that if this is truly what she has, it could have started weeks ago for a different reason not quite known.  Anyways, she (the Doc) had an instinct to prescribe a quick pickup of Zantac to reverse a possible acid reflux going on.  Ellie, who had been screaming at the top of her lungs for the better part of 4-5pm today because she was in pain, took the first Zantac dose at 5:15pm.  By 5:20 she was a completely different person.  She looked up from the couch, smiled, got down and came into us in the kitchen and announced she was ready for pumpkin pie.  Wow.....Wow Wow Wow.  For tonight, calm has been officially restored.  We are not our of the woods with the stomach issue yet.  We need to get through a full day of normal eating, drinking, and behavior before that happens.  But I feel like we got back to the barracks today exhausted and ready to collapse but with a small yet quite significant victory despite it not being very pretty outside.  Very very thankful for that.

I turned 37 today.  Hopefully Polly and I will be able to repeat that dinner from last night sometime very soon.  This blog post tonight could have very easily had a different tone or perhaps not even written had we not found the magic acid reflux elixir right before dinner.  I have not had a chance to respond to all of the wonderful birthday well wishes on facebook today but I want to say thank you for the great thoughts for me and my family.  The blog tonight was more of a self needed transition out of survival mode with an attempt to ease back into a daily routine (so hoping that is true) tomorrow with Ellie and with the fact that spring break for me is now over thus beginning the whirlwind final 8 weeks of the school year.  Needless to say, I would trade any gift received today for a promise Ellie will not have to ever suffer again the way she did this weekend.

I suppose there have been better birthdays.  But you know there were three moments that made the day today which bring as much significance to 37 as any other year prior.  They filled me with a sense of love and gratitude which help to refuel the tank, aid in licking the wounds so to speak, and get me fired up to go right back out there tomorrow.  One - my parents who are the reason I am who I am today support whenever and however they can.  They also never miss a time to call and say Happy Birthday.  Two - in the chaos of trying to calm Ellie this afternoon and keeping Timmy below Deafcon 3 on the energy level while I was out picking up Polly's dad and doing a quick grocery run, Polly pulled up "Toy Story" On Demand through our TV cable for the first time.  Timmy, who has "Buzz LightYear" pajamas but has never seen the movie, only knew who Buzz was because we all call Timmy that when he wears them.  Sometime ago we also pointed out the Buzz action figure in the window of a toy store we passed by.  Again, he was intrigued but without proper background didn't think too much of it.  So tonight when the movie came on, he was not fully aware what he was watching.  If you know the movie, you will recall that Buzz does not make his initial appearance until about 15 min in.  As the movie starts Timmy sits dazed watching.  (No big thang, mom, where the heck is Meesca-Moosca Mickey Mouse????)  When Buzz finally comes on the screen for the first time, we had ourselves an Awakening in our very living room. The sun came up, the trumpets were heard for miles, and the Hallelujah chorus was deafening.  Timmy came flying of the couch pointing at the TV and yelling - "LIGHTBUZZ, LIGHTBUZZ, MOMMY, IT IS LIGHTBUZZ".  For the rest of the night, he was standing with his legs spread and his hands on his hips telling us he was about to blast off, even hitting the fake buttons on his pajama top while getting ready for bed (well seriously, after the awakening, what do YOU think he was going to wear to bed?), and attempting to bellow out "To Infinity and Beyond" (came out more like "To Ifnitty and Bond!").  Goodbye Thomas (ok, not so sad to see Thomas replaced in all honesty), Goodbye Bob the Builder (do like Bob though, he authors short books), and Hello Toy Story.  Timmy's smile and enthusiasm is both renewing and resilient....wise beyond his years.  When Ellie is with him, he is very visibly whole again.  Three - we ended the night taking dinner another friend has delivered to us (thank you Sheila!) up to Polly's parents house for an unplanned impromptu Sunday Night Dinner with everyone present.  The topics discussed?  Ellie's small temporary yet slightly miraculous recovery, the incredible emergence and quite hysterical addition of LigthtBuzz into the family, and a serving of birthday pumpkin pie for dessert.  My mom will tell you I don't like Pumpkin pie.  She would be right.  But it is Ellie's favorite and therefore that's what we served tonight with three candles blown out in one joint powerful breath between the twins and myself.  I wouldn't have it any other way.  Words cannot express the thanks to God for somehow bringing us all back to the table tonight to enjoy a little bit of Now.

Thank you for all the continuing prayers.  We made it to Monday.  And it is even starting to rain as I finish this, leaving the door open for some dancing in the morning I suppose.  We have more things that have to be figured out this week on Ellie's treatment front with her stomach issues but we will get there.  You will never see anyone work harder to that end in his 38th year than I will in the months upcoming.  If you see Polly this week, please give her a hug.  She is the strongest person I know and I am very lucky to be able to stand next to her through all of this.  Monday - check.  10th Birthday - Upcoming.  Infinity & Beyond - A steadfast promise.

Dollars & Sense - Day 649

Two blog posts in three days?  It's Spring Break.  Believe it or not, things have slowed a bit for the better and so writing is always an option with some spare time.  I so enjoy the peace found after 9pm on simpler nights.  With a little help from my pals Ludovico, Mr. Botti, Chris Martin (Coldplay), and maybe a dash of Hans Zimmer....there is calm, there are deep breaths, and there is prioritized reflection to make sense out of whatever needs making sense of.  Sometimes it is just to listen and be.

Ellie is showing signs of progress out of this very long cold/flu bug spell.  I can't say it is done and over with as she still has some queasy stomach moments as well as fits of unhappy fatigue, but she was much happier in spurts today with giggles and funny phrases returning to her spoken thoughts.  If you were to see her, there are no visible symptoms of anything, just this lingering odd behavior pattern that appears for which we have no explanation.  Those periods are lessening so as we say on many occasions with things to overcome - it is baby steps forward, so long as we are in fact moving forward.  We are going to try a return to  school tomorrow and see how she does.  The weekend was complicated just a bit more being in the middle of a scheduled steroid 5 day pulse, but I am actually hoping her usual hunger button (steroid induced) is pushed a bit so she'll back to enjoying some food again.  We took her to LPCH again on Wednesday (yesterday) for some more hydrating fluids and the docs re-checked her liver counts.  Thankfully, they have started to come down and are more around 5 times normal now rather than the alarming 10.  Another good sign.  Just gotta keep the good vibes going!

Story time...

Ellie has at times started to dread going to LPCH.  You have to wonder why since the minute she walks in there, the staff drops what they are doing to treat her like a rock star.  Seriously, the girl could set an attendance record for observers during a visit that puts some small market sporting team's home game fan count to shame.  So, over the weekend when Ellie was feeling just plain awful, "Gigi" (Polly's mom) handed Ellie a single $20 bill and told her she could go into the LPCH gift shop and pick something out to buy for herself the next time she was there.  Ellie took it from her and was elated she now had ONE "dollar" in her hand.

After Wednesday's hydration, labs, and chemo session Polly had planned to take her to the gift shop on the way out.  Having been enamored with the possession of one whole "Dollar" for a few days now, she was starting to have second thoughts about parting with it.  There was much talk about buying balloons and other cool things she sees many times passing by there on her way to the Bass center clinic, but the idea of not having the money anymore was slightly troublesome.  She then asked Polly if and when she decided to buy something at the gift shop, would the store person take her money and not give it back?  Polly explained that the store clerk would give her the balloon in exchange for the money and when you buy something you give your money up.  There were a few 3 year old requisite "Why?"s that followed but finally she settled on mom being right (and what is fantastic at this age is that the perplexing yet thought provoking question of "why?" can be asked and then promptly answered without fail to the complete satisfaction of all parties involved by responding simply "Because".  Not saying I pull that card out all the time, but in some dire situations, I am going to miss it dearly when it no longer works as she will continue to prod with the exact same question again, only this time twice as LOUD).  Why?  Because.

So, in they march to the gift shop.  Ellie mulls around and picks a balloon out.  Thematically yours, Bob the Builder!  She immediately tells Polly that she would like to spend part of her dollar to buy this for Timmy.  Awesome.  (Have I not told you how wise beyond her years she is?)  She also picks out a cool little pink flashlight for herself and goes to the counter to pay for both items.  She hands the clerk the $20 dollar bill which as you can imagine is much more than the cost of the two items.  The clerk hands her back change consisting of TWO $1 bills.  To her shock, awe, and completely pleased surprise with a grin that would make a sunny spring afternoon jealous, she looks at Polly and exclaims, "See mommy!  I bought the balloon and she didn't take my money.  She gave it back to me and now I have TWO Dollars!"  :)

That's my girl.  I teach math....and I don't find a thing wrong with that logic.  If anyone has to tackle Leukemia, we'll find a way to double your money too.  Take your flashlight and light the way, El, Mommy and Daddy are right behind you.

I started going to church regularly when I was 12-13 years old.  I remember questioning in all seriousness (as adolescents do) how it was possible for a mortal man (Jesus) to perform miracles.  Seemed like too much make belief without any hard core facts to back it up other than stories passed down through generations.  I had a hard time accepting something that was too much of an unknown.  In what sometimes seems like a blink of an eye, here I am some 24 years later still having not seen half of what I hope to see before I take my last breath.  But over a time period that cannot appreciatively be shortened (therefore decreasing its effectiveness through quantity of experiences lived), I have come to know and begin to fully embrace the mystery of Faith.  I say "begin" because there is always so much left to learn.  Faith has allowed me the privilege to grow while bearing witness to miraculous things that then shape how we carry ourselves onward.

Ellie and Timmy are Polly and I's walking miracles.  From a mental snapshot, an actual photo, or a simple moment caught in time.....I can look and just know that everything makes perfect sense.

Please continue to pray for the ever improving overall health of Ellie and her many fellow warrior friends Justin, Jacob, Madeline, Lilly, and many many others who we are honored to share the Bass Center Lobby with weekly.  We're gonna beat this thing.

The Unexpected - Day 647

A little over a year ago, we crawled out of Ellie's final front line treatment sessions exhausted from the various side effects and tired of long days at the hospital.  We were anxious to get to this lighter chemo phase that would last the final year and a half of her protocol and in many instances craved a more normal health pattern where we knew what to expect.  Her immune system had been destroyed by the heavy chemotherapy and though it still was to be suppressed for the next 18 months, we would see it come up to a level where fighting off bugs was at least possible.  It think we have been fairly lucky for much of the time since.  Ellie's blood counts have remained relatively stable with a dip when dosages are increased (which occur when a patient reaches the next age/weight class as they grow) but good n' high enough that illnesses to come her way have not lingered.  Mentally, these last 12 months have been more or less better than we thought possible because we transitioned out of survival, day-to-day, mode and were allowed the luxury of thinking ahead.

We are still looking ahead with as much Hope as ever but got a definite jolt these past two weeks with the onset of what seems to be, after all the battery of tests finally done in the last 48 hours, an unknown composite of multiple viruses that came on strong just after she had started to kick two other cold bugs.  Timmy has been prone to respiratory infections since he was born and so we are on a higher alert during the winter months when it comes to basic colds with him.  In mid February he, along with a lot of help from "Nebby" (his nebulizer), overcame his latest cold and promptly passed on the germs to his sister (oh yes, twins share everything).  We figure at least we have a warning system in place as he is always the first one to catch something.  Ellie's version of the cold went to her chest, so the docs at the clinic ran virus check on her through a nose swab and she came back positive for the RSV virus in late February.  She did OK with this, had a slight fever, but never got to a point where we were alarmed.  She got better as we expected.  Wasn't it my last post where I had mentioned we were close to coming out of winter free of major issues???  I should know better by now.

Soon after the RSV had taken its course and given Ellie a good sized cough, her digestive issues began with an intestinal virus.  We started to see a strange change in her behavior.  She had very low energy and wasn't playing with Timmy in the same manner she usually does.  She lacked interest in activities and though the physical symptoms lessened in frequency, her normal, joyful, fun loving self had diminished.  I hate seeing her like this.  It is the worst part of any treatment or illness we experience....her suffering through the battle without much ability for us to comfort her.  Most colds we can start a clock during the initial onset and figure we have about a week or so before she starts feeling better.  No such luck this time and thus the worries began.

Since weekly chemo with methotrextate is every Thursday, it allows us an opportunity to see the doc if need be and have her examined.  During the third week of March, her digestive issues turned into periodic bouts of vomiting.  It is very difficult to tell on occasion whether an upset stomach is derived from a recent chemo treatment or a bug, so we play this guessing game and monitor other signs.  She is on a regimen of Zofran for nausea after every Thursday treatment which usually does the trick.  Only this time it didn't seem to help much as her stomach has remained queasy ever since.  Her unhappy moods kept her clinging to Polly most afternoons and when she did want to play a little, very small things would set her off to tears.  Polly started to prod me that something bigger was wrong.

If you know the story of her diagnosis, we had five main signs that had come up in the 2-3 weeks prior to June 26th that we had no idea what they were all pointing to until the doc made the big discovery with blood work that day.  1 - She had a big (very hard) belly from an enlarged liver/pancreas; 2 - She was extremely fatigued; 3 - She clung to Polly because she was in pain and her general unhappiness lingered over a long period of time; 4 - She had a low grade fever off and on for  a couple weeks; and 5 - She didn't want to eat much.  I'd admit that these symptoms are so burned into our minds now that you could say there is a little PTSD (post traumatic stress disorder) to it all.  These symptoms that may come up now in other non-cancer related scenarios can act as triggers for us in our thought process.  In the last two weeks, we've been experiencing all but the fever.  To be fair, her enlarged stomach is not a huge concern because we are sure to have her examined weekly (to a point where the doc kind of jokes with us about it - ya know....not funny "ha-ha" humor, but enough to let us know it isn't too much of a concern).  When the fatigue, lack of appetite  and clingy-ness reached Day 11 this past week and her vomiting was still persisting....I agreed with Polly something was going on.

We had called the docs a couple times and hoped for some answers but each time were told it was something that she would pass and that it wasn't a cause for concern.  This is one thing that drives me a little nuts about the docs on call - so easy to give a protocol type response (what he/she is seemingly required to say) when they are not the one watching her suffer through it all.  Ellie's weight had fallen 3 pounds in a little over a week when I took her in for her weekly chemo last Thursday.  She just wasn't eating.  I asked for a consult and we were given reassurance again that she was fighting a couple bugs and just needed time.  Couldn't we run some tests?  Thankfully her blood work looked steady but here we were getting more chemo and with it more unhappiness for her stomach.  As a side note, you must understand the chemotherapy she receives is literally saving her life, I never doubt that for a second (!!!), but our the cancer world is still using many drugs that are so toxic for human consumption.  They kill the intended cells but also many living healthy cells as well which could provide for long term health issues down the road.  It is a very uneasy feeling about messing with mother nature's original intentions.  We do what we have to do, of course, but therein lies the accompanying complexities of how chemo drugs mix with the body's normal abilities to defend itself.  As we are finding out, the potential variations and scenarios with how Ellie will react to every bug that comes her way are countless leaving us with an overwhelming number of things to learn around every turn.  I always get back to that question I ask of my players on a regular basis - "Have I done all that I can possibly do to help my team today?"  It is for us as parents to observe and note what we see and then advocate like hell to get answers.  I'll be damned if I miss anything that may lead her taking a turn for the worse one day.

After her Thursday chemo session, we returned home for Easter weekend with no change in her fatigue.  We had started to get very frustrated that not much was being done to figure this out.  On Easter Sunday while trying to enjoy some nice family time, her vomiting started increasing at a more alarming rate.  By 6pm we had had enough and decided to head to the ER at Stanford.  (If I were to tally all of days for our ER visits, I believe Sundays would win in a landslide, why is that always the case?)  We were there for five and a half hours trying to get some tests ordered, which they did.  ERs are wonderful in the service they provide overall but they do not know the oncology world very well sometimes.  I can smile about this now but it always takes the first hour or so for us to get the attending doc on the same page with us.  Once they know we can toss medical acronyms back and forth in conversation in a respectful but c'mon-we've-been-at-this-for-almost-two-years tone, we actually start to move forward in a productive manner.  This is where Polly is amazing.  She pushes the docs.  She has an amazing ability to put emotion by the wayside and get them to hear the difficulties that have led us to finally coming in.  And while this night did not provide all the answers we wanted, we finally got some movement to rule things out (which can bring a great deal of piece-of-mind at key times).

Through a few tests, we learned her liver function was elevated to ten times its normal value.  This figure is elevated about 2-3 times normally due to the methotrextae she receives so it was the one eye popping value of the night.  Her blood work was otherwise OK which beyond all the worry that came in the prior 7-10 days is a nice ace in the hole to have in your back pocket.....because it ultimately means she is not relapsing. It is a nice little thing to know you can bank on even though Ellie is right in front of us very unwell.  We currently have a couple of tests still pending as I write this but the take home message, which was confirmed by her oncologist yesterday, was that she is fighting off multiple viruses right now and it could possibly take a month to get rid of.  A month.  We had no idea.  Add that simple yet you'd think quite significant piece of information to the book never written on "What you should expect to see when your child is being treated for cancer".  As always this is trial by fire.  I know it is near impossible for the docs to tell us every possible scenario that might come our way, but the scope of the conversation we had yesterday could have easily been given several days ago.

Ellie received hydrating fluids on Monday morning in the clinic and will get more tomorrow as a follow up.  She has a Vincristine injection on tap for Thursday which is a constipating drug, so the assault on her gut doesn't really let up this week.  I would say today for the first time in a quite a while was a better day.  She was active and playful for more parts than over the weekend and had a little more of an appetite.  Now that we are aware this could be a couple more week battle, we're watching her diet with fine detail to hopefully get her stomach back to normal.  She's not too happy about some of the things we won't let her have (yogurt, milk....Frank's red hot sauce - ha) but complaints over food are a lot better to hear than general moaning and crying that goes on intermittently for hours.  Her liver values had come down a bit as of yesterday as well which is a good sign and I can say we are all a bit more relaxed as of today, which is a welcome relief.  She is sleeping soundly right now and we hope for a few more baby steps forward tomorrow so she can return to her beloved pre-school by next week.

I look at this whole two week experience as a potential positive in one respect actually.  This is another notch in the experience column for us; something that helps us deal with future ailments much better.  In 6 short months, we will be done with all chemotherapy and go, as they say, OT (off-treatment).  The chemo is a bit of a safety blanket right now which though is causes the suppressed immune system, the actual chances of relapse during active treatment are incredibly small.  This won't be the case following next October and I can already envision a tough winter moment of two when something like a similar bad cold/flu arises leaving  us guessing how much we really should be worrying about on the cancer front.  You want to be able to look to the future, make plans, and dream a bit like we did before leukemia entered the building.  Scares like this, even if just in our own somewhat uneducated medical minds as parents who are not doctors, have a very cruel way of yanking you back into a struggle that keeps you from being able to dream.  It's just part of the whole world we walk through now, like it or not.  I can accept that.  But as OT lies ahead, I want to know what things are possible as she starts to work her way back to normal body operations.  If she gets a bad cold, it may take a month to fix.  OK, got it.  Didn't know that before, but won't ever forget it now.  I know those first several months OT are going to be very tough as we hang on every blood test. If there is an edge to gain on knowing what to expect, like the incredible coaches I have worked with and know how to scout his opponent every which way possible, I want to have it and will rehearse every possible scenario so we're as prepared as possible.  Ellie deserves nothing less.

Thanks to many of you for the prayers over the last week.  I'll let you know if things don't continue to improve with her current ailments but we're finally moving in the right direction.  The Easter message of new life always comes at such an appropriate time for us each year.  If anything there is the reassurance of Faith which to walk without would lead to pointless and perhaps very painful meandering.  It may mean we bug, annoy, and nag the doctors we come in contact with so often, but we just want to hold onto that luxury earned from 21 months (!!!) of cancer remission,,,,to be able to look toward the future and see a huge potential for much brighter days ahead.