Home time and Nausea

Monday, July 30, 2012

I am home again with Luca from Sunday afternoon to Tuesday afternoon.  Such a  blessing and such torture at the same time.  Luca and Sean are so happy to see me and I am happy to see them...have regular meals at the table, walk to the mailbox for mail, take a spin around the neighborhood on our bikes; and at the exact same time I am in an internal panic much of the time worrying about Dillon; is he eating, is he sick, what were his blood counts on the last lab draw, did they bring him all the right medications at the right times, on and on.  BREATHE SHARI BREATHE!!!!  It is all going to be okay, I tell myself in my mind over and over.  Dillon is fine, Luca is fine, Sean is fine, Shari is fine.  We are all going to weather this storm.  Do we miss each other, is it difficult, are we all hanging by a thread...YES, YES, and YES...but it is going to be okay.  We are going to get through this...it will be in our rear-view mirrors and we will look back on what we learned, how we changed, how we each grew and became better than we were before.  I know that is true and I have to hold that in my heart everyday.

Poor Dillon has quite a bit of nausea this time around.  He is okay during parts of the day and is eating some things (tonight he sent my mom out for tacos) but other parts of the day he is just miserable and he usually requests an anti-nausea med and that makes him sleepy...so he sleeps and eats and goes to the bathroom (just like a baby or an old person...hahaha)...with a little Olympics watching and taking walks sprinkled in.

His counts are SKY HIGH again.  We are waiting waiting waiting for them to drop just like last time.  He is getting acupuncture tomorrow afternoon so it will be interesting to see what the counts are on Wednesday evening/Thursday morning.  The trend the past 2 times has been big changes about 24 hours after acupuncture.  The doctors acknowledge that this sort of high count is unusual in someone with this sort of cancer and this much chemo.  They also acknowledge that Dillon's body has shown this sort of resistant pattern...taking longer than expected to react to chemo...so we have to be patient and persistent. 

I was informed today that we are on the path of going to Denver at the end of August.  I honestly thought it would be September. YIKES!!!!  It feels like that is tomorrow.  It feels like I will just disappear off the face of the earth for my Luca and Sean.  It feels like I won't be ready in terms of logistical stuff (packing, bills, paperwork, work, finances).  It is just still unbelievable to me.  I am still shaking my head, not comprehending that this is really happening to my boy and my family.  Can shock last this long?  Will it become more "real" at some point? 

Luca continues to completely blow my mind.  He is the most grounded and thoughtful child.  He is absolutely enjoying his summer.  He has done one activity after the other with gusto, full throttle.  However, deep inside, in his sweet quiet mind, he holds his brother close and dear.  At dinner each night we say a blessing of sorts; we hold hands and we each talk about something we are grateful for; sometimes it is small (like a flower) and sometimes it is huge (like being glad we have a loving family);  Well this evening Luca's grateful statement was this....."I am so so so grateful that there are no more cancer cells in Dillon's bone marrow."  We have not talked about that in a couple of weeks.  There was no recent conversation around cancer or Dillon or anything related.  Luca just came up with this seemingly out of the blue.  WOW!!!  Who said they are glad Luca is only 7 because he cannot fully comprehend the gravity of this situation?  Who said Luca is a little boy and just busy with his own life and fun activities and does not give this brother's situation a second thought?  He proves to us every day that he is fully present and embracing the entire process; his brother, his father's role at home now, his mother's role at the hospital and inability to be in both places all the time, his grandparent's roles.   This young boy "gets it" and it is humbling. 

Remember the post from Denver with the Buckley and Dillon street signs....well look what I found in Albuquerque....

Heading into the Weekend

Saturday, July 28, 2012

I know you are all wanting information.....but really right now....thankfully....there is nothing going on.  Dillon got his 3rd day of chemo last night.  If you recall there are 5 days of chemo, then 2 rest days, then 3 days of another cocktail of chemos.  He is doing beautifully.  He is very tired, sleeping 15+ hours a day.  As you all know, sleep is very therapeutic for the body, so he is healing in his sleep.  Also it passes the time.  The day just flies by.  I know he feels like he is in a time warp (as do I) because he gets up, eats breakfast, walks around, sleeps, gets up eats dinner, watches some TV or plays ipad a bit, and then back to sleep.

We are in the midst of Olympic mania.  How about you?  There are so many amazing sports and athletes to watch.  Months ago....long before this new journey came into being....I had begun researching how we could get cable TV for just the summer so we could watch the Olympics.  (If you don't know, we have a TV at home with a DVD player but it is not hooked up to cable or antenna or anything; and cable TV is a contract sort of thing so they lock you in for 2 years with lots of penalties if you cancel early).  Well, it is a good thing I did not plunk down a wad of cash to have TV at home....as we have unlimited TV with many many channels at all hours of the day and night, for the most reasonable price of ......thousands of dollars a day.  What I would not give to trade all that TV time in for just a walk around the neighborhood with my sweet boy.

He is strong, determined, fighting like mad.   He has accepted this monster in his body and is in for the long fight.  He is hearing stories about others who have won the battle and he feels inspired, resolute, steadfast. 

Funny story....when we arrived at UNM on Wednesday, Dillon's primary oncologist took one look at his knees and her eyes about bugged out of her head.  She was oh so worried about Dillon getting an infection in one of the many
scrapes, bruises, and scabs that donned his legs.  Shame on her....thinking that this athletic boy was going to go home and sit on the couch.  Dillon very strongly informed her...."I'm not worried about it; it barely even hurt and it did not bleed so my platelets are fine!!"  HAHAHAHAHA  You tell 'em Big D!!!!

Change in visitation rules on Special Care Unit

Thursday, July 26, 2012

There has been an outbreak of pertussis/whooping cough in New Mexico. This is a highly contagious, easily transmitted bacterial infection that is most prevalent in young children. As a result UNM has implemented visitation restrictions in certain parts of the hospital, ours being one of them.

NO VISITORS UNDER THE AGE OF 14.

Most of the kids in this unit have compromised immune systems, thus they cannot fight infections well, which is why young children are not allowed on the unit. In fact, this is the visitation rule that is in place thought the entire cold and flu season every year. Obviously, the person most affected by this in our family is Luca. He does not yet know about this new rule (PLEASE do not mention it around him. His dad is going to be the one to explain it to him....and he is sure to be VERY upset, so please please respect this wish and do not talk about this restriction until after this weekend!!!!)

On a different note.....getting re-admitted to the hospital has been a fiasco. We were faced with one problem after another since the moment we set foot back in Albuquerque. Suffice it to say we were all disenfranchised with the system yesterday. Dillon did not get all of his meds or his chemo until almost midnight. He was exhausted and frustrated, as well as worried that they did not know what they were doing and scared that they were going to mess something up or miss something important. Uuuggghhhhhfggggfggguuughghghg......that is me screaming about the system and it's lack of effective functioning at the moment!!!!!!!

Whirlwind of fun and information

Wednesday, July 25, 2012

Dillon tried to make up for the past 2 months of illness and hospitalization in the past 4 days....you name it, he did it.  The amazing and wonderful part of all of it was his enthusiasm, his energy, his endurance, and his motivation.  Swimming, basketball, friends visiting, going to the movies, favorite foods at home and out, an airplane ride, bowling, aquarium visit, and a sports car.....soooooo much fun to be had in so little time.  He sailed through it all with health, wellness, and joy.

The trip to Denver was great in many ways.  Sean, Dillon, and I were all relaxed and happy.  We headed out on Monday afternoon after a quick visit to UNM for a blood draw to make sure everything was okay for traveling.  All was well, so off we went.

A big surprise I planned for Dillon.....yes another big surprise.  You know as a mother who is having to watch her son pass the summer in a hospital, I figure any little extra things I can do to help build positive memories for him is well worth it.  Photo below......

I'm not sure who liked it more....Dillon or Sean :))

We kept finding signs with our names on them....

As for the medical portion of our Denver trip....take everything you have learned about cancer and medications and side effects in this Big D journey, and multiply it by 10....that is about how much information Sean and I were inundated with yesterday.  It was huge and scary and overwhelming.    I cannot even begin to put it into words for you here.  So what I will do is just keep updating you on what the next step is and maybe a little look forward, but if you have questions, please comment and/or email and I can share what I know.  We just keep shaking our heads....this is unbelievable.  We still have trouble wrapping our brains around the fact that this is happening to our child.

Here is what I can tell you without question.  We are back at UNM inpatient.  We will be here for probably 15 or 20 days, if all goes as planned.  Dillon is getting his second cycle of the new chemotherapy, which is 5 days of one kind of chemo, 2 days off, and then 3 days of another combination of chemos; this is just like last time.  We will then HOPEFULLY get a few days at home.  At the end of a few days of rest there will be another CT scan, lumbar puncture, and bone marrow aspirate.  Depending on what all of this shows and also depending on how Dillon fairs physically, we may or may not be going up to Denver for the transplant at the end of August.  There are innumerable variables that come into play with the doctor's deciding if we go to Denver after this cycle.

If we do go, then we will be gone for a minimum of 4 months and more likely 6 months.  The first 2 weeks in Denver are outpatient.  We will be provided with a little apartment and that will be our home base.  Dillon will be seen by every imaginable specialist and put through every imaginable test; dental, dermatology, pulmonary, radiology, GI, GU, neuro, ENT, endocrine, renal;  All of this is to get baseline information to know how each system in Dillon's body is functioning BEFORE we begin the transplant process; and with that they can monitor changes as the transplant process progresses.  After that 2 weeks period of outpatient testing and procedures, Dillon will be admitted to the hospital and will begin the "conditioning" treatment to prepare for transplant.  This is the super duper humongous toxic chemo that will completely wipe out Dillon's bone marrow and immune system.  Then comes transplant. 
Again, I will share more about the details of what this will look like as the time gets closer.

There are several bone marrow match possibilities that are being studied as we speak; a couple of them are adult donors that are in the registry and several are frozen umbilical cord blood bank donors.  There are numerous and vastly complex testing that has to happen to get the match as specific as possible.  There are close to 100 factors that they look at and the preliminary match begins with about 10 factors....so they then begin looking at more and more factors to narrow down the match to the one that has absolutely the most factors the same as Dillon. 

Basically, we are just needing to take this HUGE project one day at a time, one medication at a time, one procedure at a time, one side effect at a time.

We love and appreciate all of you and will keep on trudging through the details and information as it comes.

Pause

Tuesday, July 24, 2012

We are currently in Denver. I will share with all of you how the weekend at home went, as well as some of the events of our trip......however, I am going to wait until we get back to UNM tomorrow afternoon. I am without my laptop and lengthy posts are tedious on the ipad. Until then......just know that all is well, Dillon is happy, healthy, strong, and ornery as ever :)))

CELEBRATE!!!!!

Friday, July 20, 2012

We got the call today from Dillon's primary oncologist.....the bone marrow biopsy results......

DILLON'S BONE MARROW IS CLEAR OF ALL CANCER CELLS!!!!!!!

This is step one of getting to transplant.  He has to be "cancer free" in order to undergo the transplant. His blood still has cancer, his lymph nodes still have cancer, and he still has the mass in his chest.

Some people are asking...if he will be 'cancer free' why does he need the transplant.....because aggressive cancers that behave strangely (as his did in the face of the very first chemo round) almost always come back later and they come back more aggressive, more severe, and more life-threatening.  So bone marrow transplant is the only option to avoid this more than likely event happening.  We met a boy at the hospital a couple of weeks ago...he was "cancer free" for 8 months after grueling chemo.  So now he has to do extra-terrible chemo (similar to D's) AND he will be referred for transplant.  So we are trying to circumvent this occurrence in this very odd, almost unheard case of lymphoma that grew during chemotherapy treatment. 

YAHHOOOOOOOOO   HUGE CELEBRATIONS HAPPENING AT OUR HOUSE!!!

Oh yeah....I forgot to mention that Sean, Luca, and I are NOT matches for Dillon's bone marrow.  So his search went national about 2 days ago.  We could hear in a few days if we have a match or it can take a few weeks.  MORE WAITING....we are getting good at that :))

A WHOLE NEW WORLD!!!!

Friday, July 20, 2012

WE ARE HOME!!!!!!!

ALL OF US!!!!!  Dillon got discharged yesterday.  We will be home Friday, Saturday, and Sunday.  On Monday we head out to Denver for his initial consultation for the bone marrow transplant.  We are flying, renting a car, and staying in a hotel.  Dillon has been cleared to EAT WHATEVER HE WANTS....a huge salad with tons Gorgonzola is first on the list.  He is also cleared to SWIM!!!  We will make this trip a mini vacation.  Luca was previously scheduled to go to Pagosa Springs, Colorado, with Sean's parents and one of his cousin's from Dallas...so he will do that while Sean, Dillon, and I will go to Denver. Luca is disappointed not to go on the airplane and stay in a hotel...but he is also very realistic about all the waiting and sitting and boring doctor/hospital stuff that will happen...so he is accepting his choice of hanging out in the mountains with some family.

Dillon is OVER THE MOON happy to be home!!!  He got out of the car last night and immediately began playing basketball.  He has not touched a basketball in 2 months.  Even when we were home before he just would not do it.  He said it made him too tired!!  He then invited his brother to sleep in his room, they slept soundly all night.  I got up this morning to Big D in the kitchen making his brother one of his world famous omelets....then he says...."Luca, would you mind if I play you some viola while you eat?"

MY BOY IS BACK!!!!!!!!!!

We will go back to UNM straight from the airport on Wednesday morning to be re-admitted for the second round of the new chemo.  We will be there for several weeks again...so this freedom is OH SO SWEET!!

The REVEAL.....as promised...

Tuesday, July 17, 2012

Dillon has been surprised in ways that he never thought possible this past week.  There are not even words for the amazement, astonishment, shock, wonder, and bewilderment that occurred TWICE last week for this lucky boy.

First the photos.....then the explanation....in two sections

Celtics T-Shirt

Rando's Real Signature on the bottom of this photo

Pencils, towels, notebook, and other stuff...all Celtics

Autographed Photo of Rajon Rando #9

My brother, Todd, is a firefighter who lives in Montana.  A couple of weeks ago he was in Colorado helping with the fire efforts in that state.  As he was out in the wilderness, it struck him that Dillon needed something super duper special and exciting to lift his spirits.  I don't exactly know how he pulled this off, but he somehow located the head of community relations for the Boston Celtics.  He told them Dillon's story and asked them if they could send him something to cheer him up.  Not only did Big D get a box full of goodies...including the autographed photo of his very favorite player....but a letter telling Dillon that it is special fans like him that help make the Celtics a great team.  The letter even mentioned that Uncle Todd had called and asked them to send him some stuff to make him smile.  WOW....how amazing is that.  Dillon was really speechless as he pulled the items out of the box.  I immediately brought a frame from home to keep the photo safe and on display.  It is sitting in the window in our room and Big D looks at it every day.  He is very proud of it and when people ask him where he got it he says...."My Uncle asked the Celtics to send it to me." 

OKAY, now for super surprise number two.....

A Celtics bag, what could be in here???

OMG, a ball signed by the entire Celtics Team and the cool flag that his cousin sent a couple of weeks ago (Thank you Sophia, it makes the room feel super sporty and fun)

Signed Celtics ball and Daisy...who delivered the ball and a yummy sushi lunch

Dillon's classmate, Daisy (Seen above in the photo) has a mother who is crazy cool and has connections in lots of 'high places'.  So she called up a friend who happens to work for the owner of the Celtics...YES the owner.  She told Big D's story and the owner immediately had the team sign a ball and he even wrote Dillon a hand-written letter expressing his support for D and thanking him for being a fan.  He even asked Daisy's mom to keep him updated over the next months about how Mr. Pickle is progressing.  

HOW CRAZY IS THAT????? Twice in one week Dillon is blessed with TWO once in a lifetime gifts.  We all keep shaking our heads at the odds/statistics of a child getting the type of cancer Dillon has....now we are all shaking our heads at the odds of a child getting this sort of attention from  a world-class basketball team on behalf of his beloved Uncle and family friends that are right behind Dillon, holding him in loving tenderness through this journey.   

THANK YOU TODD AND SANDY FOR MAKING THIS AN EVENT OF A LIFETIME FOR OUR DILLON!!!  He will NEVER forget this experience and you have put this huge highlight in his life....THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU !!!!!  

The joyfulness in my boy right now is PRICELESS!!!!!

One Month

Tuesday, July 17, 2012

I continue to be amazed at that weird time warp phenomenon that happens in life.....you know the one where time feels like it is going by so crazy fast AND incredibly slow at the exact same time. I heard a saying once in reference to raising a family that goes like this: "These are the longest days and the shortest years." This past Sunday marked one month back in the hospital. Can you believe that?? Does it feel like it has been that long for those of you "on the outside" or does it feel munch longer or shorter?? It is hard for Sean and I to believe that we have only know about Dillon's cancer for 2 months; 1-1/2 of which we have been hospitalized. It feels like a lifetime ago that Dillon and I sat in a room and learned about the mass in his chest.....and it was eons ago that I had to place calls to friends and family to break the news.....and then it feels like it was just the other day that Dillon and I checked back into UNM. Life and time is just so bizarre.

Dillon and I received acupuncture again yesterday.  Melisa and D had a fun and inspiring conversation. We were talking about summertime and how Dillon is sad and frustrated and disappointed that he is basically having to skip this summer, as far as the usual fun summertime activities that he enjoys. Melissa planted the idea that next year is going to be a double summer and that he will just have to do twice as much of everything fun...and they started talking about what those activities would be. It was such a healthy, positive, forward-looking conversation and Dillon even sounded happy and excited thinking about all of the possibilities.

My parents and Luca are actually in Albuquerque this week. They brought the 5th wheel down to an RV Park. Dillon is so very happy that Luca is able to pop in and out every day. Our big brother Dillon has returned. For the past several weeks (especially early on in journey) Dillon had no patience and really no interest in being with Luca. He would say..."Luca just takes too much energy.". But in the past couple of weeks, every time Dillon hears that Luca is coming to see him, Dillon just lights up.  On the flip side...Luca declared that he wished he were 18 so that he could either drive to ABQ in his own car every day (he would not have to wait for Sean or Nana to bring him) and if he were 18 that would make him old enough to be the one to sleep over with Dillon in his room. No longer does Luca complain about being bored when he is here. No longer is he looking for any and every excuse and opportunity to leave Dillon's room and go do something else. He is perfectly content to just stay by Dillon's side for hours on end.   Luca is the one who sat with D, holding his hand, helping him breathe and count and focus on Sunday during the port access (which had to be done twice because the first time was not quite right in the placement of the needle).  Luca kept D focused and calm, reassuring him the whole time, as tears rolled down his big brother's face.  My boys are back together emotionally, physically, and spiritually....something I feared they would lose through this ordeal. They are stronger than ever and I am so very grateful!!!

 Now a little medical update.... Big D's counts are rebounding beautifully. Yesterday his white count was 560 (over the weekend it was ZERO) and today (the day after acupuncture) they have tripled to 1500.  His platelets are recovering also.  He had both platelets and red blood cells transfused over the weekend.  We are still in the "resting phase" of the cycle. The whole cycle was slated as either 21 days or 28 days and they told me they would decide which it was when the time came. Well, it is going to be the 28-day cycle this time because it took longer than expected for his counts to drop, and then they dropped like a rock, and it takes time to get back up to a safe level; only to obliterate them again....such roller coaster ride my boy is on.  Today is actually day 21...so another week of rest. An x-ray last week showed a definite decease in the size of the chest mass, so we are going to skip the CT-scan that was going to be at the end of this first cycle. I know you are wondering why they would want to skip that.....well CT scans are very "toxic". They give a pretty substantial dose of radiation and over the course of cancer treatment that adds up and can actually be the cause of a secondary cancer later in life, so avoiding any extra scans is preferable. Basically, we know the chemo is working based on his counts dropping and recovering AND we know the mass is smaller based on the x-ray. At this point, it does not really matter what the dimensions of the mass are (i.e., exactly how much smaller it is) which is what the CT would be able to tell us....we know it is smaller and right now that is all we need to know to continue on this new chemo regimen.

Again....if you want visit, this is a good week to schedule it...before we get back on steroids and chemo. 

The ever present Celtics bracelet

Salt Rock adds positive ions and ambiance to our room

 

Dillon of Champions

See you soon :)))

Another week passes

Friday, July 13, 2012

On Sunday Dillon will have been in the hospital for a month....count them....4 whole weeks.  WOW!!!  Time has actually flown by.  No really, days are busy and full at the hospital and then with the weekends now home with Luca, the week just disappears.

The lumbar puncture went without a hitch.  The procedure was performed in the room under sedation.  He woke up hungry pretty much immediately and was on with the day.  No long, drawn out feelings of queasiness or dopiness.  It was great.

The rest of the week was uneventful.  We are in this "holding pattern" of 10 days off of chemo and steroids.  His mood and outlook on life, his humor, his energy, his strength are all on an upswing.  I dread in a few days when they have to knock him back down. This all means that the chemo is working and the cancer is dying....so it is good news, however hard it is to see and deal with on a day-to-day basis. This morning Sean said his white counts are 60.....YIKES.  A week ago they were 7000.  The staff assure us that many kids get all the way down to 0.  He is on a 10-day course of medication to help his counts recover during his time off of chemo so that he is healthy enough and strong enough to take the next round.  If his counts don't recover, we have to hold off on the next round. It is quite a balancing act...we want the counts to fall and then we want them back up.  Sean and I do not fully understand how all this works and why low is good and then low is bad and why we need special meds to bring counts back up when we were all praying for counts to drop.  It is a dance, a delicate balance, a teetering on the edge.

Seriously though, life now feels a little more normal even though we are split between Santa Fe and Albuquerque. The switching off of kids between Sean and I has done wonders for everyone.

I am home with Luca, who is going fishing and camping with a buddy tomorrow.  Do you know what that means.......I have an entire 30 hours completely to myself at home.  YAHHOOOO!!!!

Questions you might have:
Do you have the results back for our bone marrow matching??.....NO....still waiting.
When will we go to Denver????.......If the chemo works as they hope it does, we will be leaving in about 2 to 2-1/2 months.
Is Luca going back to Waldorf?????....YES, absolutely.  He needs that consistency, the social support, and the fun/distraction.

Until next week......

Be on the lookout for the next update....we will be sharing an ENORMOUS surprise that Dillon had this week...I'm just waiting on a few more photos.  If you thought the Lobo visit was big....you won't BELIEVE this one!!!!!

Dropped like a rock

Tuesday, July 10, 2012

I have been waiting; staying focused and positive and productive; trying not to read too much into the lab values that the doctors present to me each morning.......that negative, scared voice in the back of my mind has been terrified because his white blood cell count has not dropped very low...which makes me feel like maybe this new chemo is not working (because no drop in white count is what happened with the last round of chemo when the tumor grew).

Finally, Dillon's white count has dropped....LIKE A ROCK....as one of the doctors anticipated it might.  Normally these counts would have dropped weeks ago, recovered, and then dropped again with the next round of chemo; it is one of the indicators that the tumor is being killed off and the chemo is 'working.'  Well, Dillon's counts have never really dropped....until now.

Yesterday they were at 4200 and this morning 400....yes you read right...400.  YIKES!! It is bitter sweet.  The chemo is working, surely the tumor is breaking down....but now he is super vulnerable to infection and that means more medications to ward off possible infections and also more vigilance with the foods he can have and hand washing and visitors.  When Dillon leaves his room and goes out into the hallway or public areas he now has to wear a mask.

It feels very surreal and creepy to actually "want" my boy to feel bad....but in my feeble non-medically trained mind...that means that the chemo is working.  They said people whose tumors are being destroyed feel flu-like symptoms.  So I am secretly celebrating when he is tired and nauseous and chilled and such (well not so secretly now that you all know but shhhhhh don't tell anyone).

We had a great visit from one of Dillon's buddies who showed up with lunch (THANK YOU TRISTAN!!!) and many tales from his travels this summer.  

Oh yeah....D did not get his lumbar puncture today.  There was a scheduling snafu so he is going to get it tomorrow.  Big D dreads this procedure for several reasons: One is that he hates the way he feels for the couple of hours after he wakes from the anesthesia (most kids get a "simple sedation" in their room for this procedure but because of the location of the mass in Dillon's chest there is a risk to his respiratory status so they have to actually take him to the OR so they can use a different medication and also so the emergency measures are in place, just in case he stops breathing).  Another thing is he has to be N.P.O. starting at midnight tonight (N.P.O. means nothing by mouth, nothing to eat or drink, not even water) and he gets very hungry, so much so that he is nauseous because of the acid burning in his empty tummy.  The third thing is the soreness and discomfort he has at the puncture site for a couple of days afterward. 

And another day passes.......

Some blood counts dropping

Monday, July 9, 2012

Finally we are seeing a response in Dillon's blood counts to this last round of chemo.  The doctors were a bit perplexed,because most people who receive the level of chemo Dillon got this past week have a severe and significant drop in their counts almost immediately.  Of course Mr. D has to do things differently.  Maybe deep down he just wants to stand out from the crowd (wink wink).  So today his counts finally dropped quite a bit and he received a blood transfusion because his hematocrit and hemoglobin (both components of red blood) were low.

First he was given Tylenol and Benadryl.  Tylenol for the discomfort and Benadryl to ward off an allergic reaction to what is essentially a foreign body being dripped into his blood steam.

Then 4 hours for the blood to transfuse.  It looks disgusting....a bag of dark red blood hanging on the IV pole.  Dillon got pretty upset about the site of it.  Super mama to the rescue....can we please drape a blanket or in our case the prayer shall over the IV pole so that the bag and tube full of blood are not visible.  "Oh sure the nurses exclaim, that is a great idea."  Surely my  kid is the not first one to express concern, disgust, and worry over the site of a pouch of blood hanging in midair next to their bed.  Makes you wonder.

Dillon and I are about fed up with the food situation here.  We continue to have our food stolen out of the community fridge.  Yes, they are all labeled with Dillon's name and room number on them.  Today I inquired yet again about having a mini fridge in our room....the answer to which was NO!!! We were given several reasons, none of which I found that plausible...but whatever...no is no.  So, tomorrow my mom is actually bringing us a toolbox from our home that we use to lock up medication.  Yes, it has a pad lock on it.   Don't laugh!!!!!  We are going to lock our food and then put it in the community fridge.  Sean said...what if they take the whole dang box??  I said...I will have the nurses go search the rooms and find the stinking box if that happens.  It might sound petty or insignificant...but when one tries to feed oneself and one's child healthy, organic, and tasty foods; as well as when people bring special treats at Dillon's request; and they keep being consumed by some random person; and when one is facing being in this situation for multiple more weeks (yesterday marked 3 weeks), then something drastic has to be done.  Thus, the lock box for the food arriving bright and early tomorrow morning.

Back in the Saddle....

Monday, July 9, 2012

A quick update this Monday midday.

Luca and I had a lovely weekend together.  Just life as usual really, nothing extraordinary or spectacular, but ohhhh so healthy and refreshing and wonderful.  The snuggling was my favorite part.....we will have to ask Luca what his favorite part was.  Luca misses Dillon terribly.  Every morning his first question is...."Can I see Dillon today?"  

I got back yesterday afternoon to a chipper Mr. Pickle.  He was all frisky and we had some good laughs reading a new book we got......THE FART BOOK....(Thank you Cynthia, Abbey, and Alyeska!!)  I have not heard that deep, hearty laugh in quite some time, so that was a true gift for me!!!

Sean and Big D had a fantastic weekend.  They did all sorts of things (went outside to smell the rain, attended a little workshop and lesson on harmonicas, went down to eat at the public space and the cafeteria, had a couple of visitors which included music and food (Thank you Mark and Tom!!!))

So I am back.

Uneventful evening and night medically speaking.  Up many times to pee, as they are pumping D full of saline to help flush out the toxins from chemo and keep his kidneys healthy.

Dillon is on day 4 of a 10 day resting period.  No chemo and no steroids.  It is lovely.  I asked the doctor today specifically...are we gonna be here through this entire rest period and then through the next chemo cycle.....YES, absolutely, no question about it.  OKAY....it is fine....we are comfortable and time actually passes quickly, I just wanted to be clear. The reason we have to stay and so many other kids go home during this part of the process, is because of the location of Dillon's mass.  It is pressing on his trachea and esophagus and can compress his airway. They want him in the hospital the entire time for safety reasons. They don't want him to be at home and start having trouble breathing....because by the time we could get him to a hospital he could be dead.....so here we stay, safe and sound.

Hey everyone...this is a good time to visit!!!! While he is not on treatment, not as completely wiped out, not hooked up to every machine in the room....so please email and/or call me to set up 'appointments' for visiting.

WHAT NOW??? A common question lately....so here is my understanding of the next steps....
After the 10 day resting period he will get another bone marrow aspirate to check the level of cancer in the bone marrow and he will get a CT scan to check the size of the tumor.  The results of that will determine the next step.  Lots of unknowns and lots of waiting....which D and Sean and Luca and I and the rest of the support team are getting better at...sighhhh.  Do we like the unknown and the waiting....HECK NO....do we grasp fully that it is just another part of the process and that the doctors don't know everything and that some things are just a wait and see...yes...but it is tedious and scary at times.  The big question in everyone's mind....IS IT WORKING???  There is no way to know really until the scans and bone marrow are check...so here we hang, relaxing, playing, laughing, praying, getting acupuncture, eating, reading, watching, visualizing, growing, and waiting.

Tomorrow is a routine lumbar puncture/spinal tap.  They check his spinal fluid to make sure the cancer has not spread to his nervous system and they inject a small dose of chemo into that fluid to make sure that if there is even 1 cell hiding out in there somewhere, it gets obliterated!!!

Another one of our angels came up from Santa Fe and gave Dillon and I acupuncture this morning.  We are both feeling quite relaxed and peaceful this afternoon.  Dillon was looking forward to the visit and was very zen through the whole thing.  What an open, wise soul this child is.  I think he is intuitively learning what is going to benefit him....and he acknowledged that the acupuncture was definitely a positive step for him.  THANK YOU MELISSA!!!!

Home with Luca

Friday, July 6, 2012

The fireworks celebration did not exactly go as planned. The good news first. Another family in the hospital brought cookies and punch and cupcakes for everyone. Dillon and Luca ventured out to their room and enjoyed some sweets.  Now the not so good part.......the smell of the barbeque was intolerable to Dillon so we had to pack it up and eat it in the hall. By that time he was fairly nauseous and he did not want to eat the homemade ice cream either :((.  The fireworks were supposed to start at 9 p.m.  We waited and waited and waited......with tears in his eyes my sweet boy finally said, "I'm too tired, I can't wait any more. I need to go to bed." Sean and Luca left to drive back to Santa Fe. Dillon went to the bathroom, put on his pjs, and brushed his teeth. I got Dillon situated in bed, gave him a back rub, and put on soothing music.  Just as he drifted off to sleep....I saw a flash.  I turned and looked out the window and there, in the distance, were the fireworks. They were silent because they were miles away and beautiful. I sat on the edge of the bed and sob,bed, quiet body-wracking sobs.....I cannot believe he missed it. He tried so hard. We all tried so hard to make this a special, fun, memorable event, and there I was sitting in the dark, alone, watching the fireworks that my boy so looked forward to seeing.

I am taking a break from the hospital this weekend.  I left yesterday afternoon with my Luca Bear.  We had a nice dinner together and then early bed.

We will be home together until Sunday afternoon when I return to Big D.

Sean is on the "inside" doing the hospital thing.

I am going to take the next few days off from the blog so I can focus on my home.

Dillon is doing as well as can be expected with the poison running through his veins.  If Sean calls me with any interesting or significant update I will get on and post...otherwise....see you next week.

FACT OF THE DAY:  Non-Hodgkin Lymphoma occurs in 9 out of 1,000,000 children under the age of 15.

Fireworks

Wednesday, July 4, 2012

Dillon continues to have ups and downs both physically and emotionally.  I think I have talked enough about that for you to have an idea of what that means.  Tuesday was a down day on both fronts.  Big D just started the day grumpy and it went down hill from there.  We talked about the fact that this sort of thing happens to ALL of us....when we just wake up in a terrible mood and everything seems to exacerbate that and then some physical ailment might come into play and that seems worse than usual because of the grumpy bumpy....so that was D's day yesterday.  Nana and I handled it as best we could.....but the day ended, finally at 11:30 p.m. with restful sleep for many hours with only a couple of interruptions to go to the bathroom, but then right back to sleep.

Today is a new day!!!  Chipper, a little energetic.  Dillon helped me prepare our breakfast this morning.  We learned how to cook an omelet in the microwave....I know, it sounds weird and maybe gross...but good quality organic eggs and cheese beat the powdered pile of pale yellow slop they try to pass off as eggs on the cafeteria tray, even if they are nuked :))  So a couple of eggs with cheese and 2 peaches peeled and sliced.  Lovely meal and such a joy to have Dillon cracking those eggs for me this morning.

We have a big evening planned.  Dillon requested barbeque for our 4th of July dinner. So Sean and Luca will arrive at dinnertime with brisket, beans, and potato salad from one of our favorite local barbeque joints here in Albuquerque.  We will watch the fireworks from the big window in D's room and have a nice little picnic on the bed.  One of our chef angels has delivered several varieties of homemade ice cream this week....THANK YOU STACY!!!!!.  So Sean is going to ice those down and bring them as well......we are all looking forward to this little celebration together as a family.

The first day of the second type of chemo was yesterday. They started it at 6 p.m. and it ended at 8 a.m.  There are several different things that drip into Dillon's system and they each take an hour or two and then there is wait time in between with fluids and then the other meds to counteract some of the side effects...so it is a long process but for Dillon it is really no big deal.  A nurse comes in, changes the bag that is hanging on his pole, hooks up the new tubing, and then leaves....repeat...over and over.  It is not painful or uncomfortable per se.  As of this moment, the nausea has not set in.  He is, of course, very tired and weak, but that is manageable.  Even with all of that, my strong boy got up this morning after eating and said...."I need to go for a walk."  Mind you it is just a few yards down the hall and back...but he is taking seriously what the doctors are telling him about using his muscles a little.  Yeah Dillon, meeting the challenge head on!!!

Have a great day everyone....and when you see those sparkles in the sky tonight or hear them from across town....please send an extra powerful positive thought in our direction so we can continue this upswing :))

Happy Fourth of July

Hanging' with the PS2

Monday, July 2, 2012

A teenager who had cancer and recovered, donated his Play Station 2 to the next boy who might get some entertainment out of it.....well you guessed it..... Big D is the lucky boy. Dillon is lounging on my bed in a pile of pillows and playing an NBA game. It has been an uneventful day;  which, by the way, is just how we like it; nice and boring, not a thing going on, no excitement whatsoever.  We did have a visitor today. She called yesterday asking about any food cravings. Dillon declared that he would like a California roll and some seaweed salad. THANK YOU Julia for fulfilling that desire :))))

California roll and seaweed salad

Playing the PS2

The second of 2 new chemotherapy regimens starts tomorrow.  It is called I.C.E. which stands for ifosfamide, carboplatin, and etoposid.  The side effects list on this cocktail is long and potentially severe. He will have this cocktail for the next 3 days; each one takes a couple of hours and they have to be spaced out in particular time frames to each other....so D will be hooked up with chemo drip for most of the next 3 days.  Wish us luck and send us your 'feeling healthy' power for the rest of this week :))

Smooth Sailing Weekend

Sunday, July 1, 2012

The whole Buckley Clan had a great, smooth, relaxed weekend.

Saturday Sean and Luca had lots of activities scheduled including Luca's weekly basketball game and then a jaunt out to Pecos for a refreshing pool party with the 5th grade (Dillon's class) Waldorf families.  It was a farewell to one of our classmates (GOOD LUCK Luca and Edward (yes, another Luca)).

Luca and buddy Thane...another shaved head to support Dillon

Big D and I held down the fort at UNM.  We relaxed, watched some TV, read some Harry Potter, took catnaps, played cards, ate healthy and a few not so healthy (can anyone say doughnut holes with peaches on top?) goodies.

Sean and Luca spent most of Sunday with Dillon.   I ran some errands and took myself out to lunch.  That ever so thoughtful and conscientious Luca was at it again.  When I asked him if he wanted to go on errands with me and maybe get lunch together while Sean stayed with Dillon...sweet Luca came to me and said, "Mama, I don't want to hurt your feelings...I love being with you...but I really just want to be with Dillon today."  How does a 7-year-old boy become the holder of such wisdom and knowledge; the ability to clearly articulate how he truly feels without anyone being offended or hurt in any way.  I'm telling you, this child has a gift. 

Sunday was a HUGE event for the Pickle.  He got de-accessed (the needle portion and tubing removed from his port).  The nurses declared that D had earned a 'holiday' which means he was allowed to go the entire day AND night without anything hooked up...no wires, no tubes, no lights, no beeping or buzzing, no blood work at 4 a.m., no tube changing, nothing.  Just pure sweet freedom.  Big D took the opportunity to go for a longer walk than he has done in 2 weeks.  He also took an honest to goodness bath...not a sponge bath, not a wipe your dirty feet with a wet wipe bath, but a full fledged sitting in the soapy water for half an hour and scrub it all off kind of bath.  It was glorious....for both of us (hahahaha).  I had been urging a bath all week but was met with much resistance.  I caved each time figuring this kid is dealing with as much stress as he can possibly handle and there is no way I am going to induce an all-out melt down over a stupid bath.  As soon as his tired and sore body hit that water, the moan of pure ecstasy that exited his lips was confirmation for both of us that we need to make this part of our regular routine.  Soaked and scrubbed and polished....Big D declared that he felt refreshed and energized.  He requested that we (Sean and I) wheel him down to the cafeteria so he could see what they had tonight and he could pick his food for himself.  So off we went. I won't bore you with the food and the consumption of said food but just know that he enjoyed himself, was exhausted, and got to curl up on Mama's bed across the room from where he usually sleeps and read until he fell asleep.  After about an hour he decided to get up, brush his teeth, go potty, and hop in his own bed.  He is now fast asleep and I am enjoying the lack of the buzzing and bustling in the room this evening.

Holiday INDEED!!!!