Home Sweet Home and Music

Friday, July 29, 2012

I left the hospital on Thursday at about 10:30 a.m.   My mom came to man the ship so I could have 24-hours away.  I had a few goals in mind:
1.   Spend some time with Luca at home.
2.   Go to the benefit concert on Dillon's behalf at Santa Fe Waldorf.
3.   Get some much needed banking, bill paying, and insurance paperwork done.

I am refreshed and happy to be back at UNM.  I completed all of my goals.

The concert last night was AMAZING!!!!!  Thank you to everyone involved, everyone that attended, everyone that wanted to attend or thought about attending....just thank you thank you thank you.  The genuine love and support that was flowing our way last night was palpable in the room.  Every glance, every handshake, every hug, every wink, every smile, just every single piece of energy was felt through-and-through by both Sean and I.  We were overcome with joy with the community that have become our extended family and the crutch that they are creating for us to lean on.  Like Sean said in his speech last night..."We could not do this without each and every one of you!"  He means that...we mean that more than there are words to express it.  I think everyone felt that last night.

Time with my lovey lovey Luca was soooooo refreshing.  That child....those of you who have the pleasure of knowing him would agree....has an infectious laugh and a joy and enthusiasm for life that just oozes out of every pore in his little body.  He can bring me to a place of being happy and relaxed in no time flat.  The snuggling I got last night just filled my soul right up to the top.  I was able to kiss him goodbye this morning at camp with a fulfillment in my heart and a smile on my face.  I just hope and pray that he felt the same way.  The statistics, as the social workers here tell it, show that siblings have a "worse outcome" emotionally than the ill child regardless of success of treatment; so whether their siblings lives or dies, the healthy ones suffer more emotionally in the long-run than the sick one.  I found this very interesting and am taking it to heart fully.  I gotta make an extra super human effort to make Luca's life as "normal" as possible, if not more special and significant than it would have been to counterbalance the effects of Big D's ordeal.  So I ask a favor to all of you that come into contact with my Luca Bear.....give him some extra attention, a hug, a wink, a little gift, ask him him questions, talk to him....lets not have this sibling be part of that statistic.

Oh yeah...the banking, bills, and paperwork were completed successfully and that heavy weight has lifted.

Now on to Dillon and Nana.  Those two are quite a pair.  Nana got Dillon to go downstairs and across the hospital; albeit in a wheelchair because he is too tired and weak to walk more than a few yards; to get a latte.  Yes yes, I know, latte for a child.  Come on now, it was decaf and he ventured out so that was definitely a fitting 'reward' :))  That is the first time he has left this part of the hospital since we got here almost 2 weeks ago....the magical powers of NANA!!!!
Then today when I got back I heard hushed talk about calamari.  Dillon is not a fish or seafood eater...but he LOVES calamari.   Before I know it my Mom says that she is going to get Dillon's dinner....and back she comes in about half an hour with calamari...of course she knew Luca would be here by then so she brought two.  I carved up a couple of mangoes, divided the little loaf of bread with dipping oil, and the boys had a feast. 

Dillon's mood has stabilized and he had a lovely afternoon visiting with Sean and Luca.  He was awake and talking pleasantly for 3 hours straight....YAHOOOOO the meds are working!!!!!

Sean, Luca and I got our first round of blood tests for the bone marrow matching.  Luca was HYSTERICAL but after much talking and hugging and reassuring he sailed through the needle poke like a champ...not to mention that he left with a whole bag of loot (books, a stuffed bird, some toys, a Gatorade). 

Big D's 5th day of the first type of new chemo is tomorrow.  He has had ZERO nausea and vomiting this week.  He is just so very extremely, exceptionally, tremendously tired.  He sleeps a good part of each day.  As he told Nana the other day after a particularly hard afternoon...."The only time I feel good is when I am asleep, so I just want to sleep all the time."  It certainly passes the day quickly for him and his body is in overdrive with the healing process while sleeping....so I think it is a great gift to be so sleepy.   And speaking of sleepy....I am going to bed......good night!!!

Holding Tight

Wednesday, June 27, 2012


Dillon has had a couple of challenging days.  He is fairly healthy...per se....but his mood swings are severe because of the high-dose steroids he is on.  The steroid is supposed to shrink to tumor to avoid airway symptoms.  We all know how well the last steroid worked.  Well, 3 days ago Big D coughed ALL day long; a phlegmy junky cough that was persistent all day.  He could hardly speak or eat because of this crazy cough.  I feared pneumonia...but the doctors assured me that it was not pneumonia because he would most definitely have a fever and they would be able to hear it in his lungs on one of the zillions of physical exams that they do every day.  So, the logical answer; irritation of his airway and tissues from the tumor.  Thus, the beginning of another course of steroids.  At first they said 14 days on and 14 days off....but that has been modified to 7 days on, 7days off....repeat.  The mood and energy effects of steroids are devastating; so the psychiatry team has become involved and Dillon is on yet another medication for the mood swings and agitation.  Yes, there are risks.  Yes, there are side effects.....but we need to allow this boy some semblance of his regular mood so he can rally his spirits to fight this huge monster in his body.....so we agreed to the risks.

Two of the medications (the mood one and the steroid) cause increased appetite.  Kids will eat to the point of physical pain, nausea, and vomiting.  They can then develop high blood pressure, cholesterol problems, and diabetes because of the obesity.  These drugs sort of turn off the "I'm full" signal from the brain.  One more task we have now, is not allowing Dillon to overeat.  He will be allowed to eat quite a lot because he lost so much weight but we do have to be careful and now allow him to indulge in all the crazy, unhealthy cravings that will come.  I explained this to him today when he was in one of his periods of 'good mood' and he seemed to understand; however, when it was time for dinner he said he was afraid to eat at all because he did not want to get fat.  It required more talking and explaining that he has to keep up a good level of nutrition but not too much and not too unhealthy.  So, yes you can eat that quesadilla with sour cream but you cannot have 2 or 3 of them and if you are still hungry after a normal sized meal you can have some fruit or veggies or other healthy food.  Oh.....I got a glare and he dug in (guess the moment of good mood is over).  Oh yeah....the whole point of this thing was to say that he is coughing much much less than he was before the steroid started.....SO LETS JUST ASSUME THAT THE MASS IS SHRINKING.  That is what I am believing!!!!!  Join me...it is fun!!!!

We have received innumerable offers from kind and generous friends and family for bone marrow.   So I thought I would give you an explanation of the process in my layman's terms......

The way it works is they ONLY test parents and full siblings.  It begins with blood type and a few cellular markers via a simple blood draw. If that is a match, then they do another more in-depth blood analysis; and if that is a match, then they check the marrow....which even at that point may or may not be a usable match. The amazing human body is so crazy complex.   To check the bone marrow it is a 'simple' outpatient procedure where they insert a big old hallow needle into your iliac crest (your hip bone on your back) and they draw out a little bit of the marrow. 

If one of us three are not a match, then the process goes to a search at the national bone marrow registry.  If there is not a match there, then it goes to the national cord blood bank.  If there is no match there, then they go to an international search of both marrow and cord blood.  

The process is costly and time consuming, so if the immediate family does not match then they go through the above process.  I suppose it would just take too long to coordinate getting samples from all the folks that would like to try to help Dillon directly.  

If you are interested in this area of supporting us, you could offer to be in the bone marrow registry and maybe you could help another family in a terrible medical situation.

Well, off to bed.  Dillon wakes up a lot throughout the night, so I gotta get to bed early in order to get any level of rest.

HUGS to everyone!!!

Lobos and Lymph Nodes

Tuesday, June 26, 2012

After a terribly challenging night last night and most of today; caused by the steroids; with a little pocket of time around dinner that was much better.......Dillon got a big huge surprise today. 

The coach of the Lobos men's basketball team and 2 players came to visit Dillon today.  They told him that when he feels up to it they would love to have him in the locker room before a game to meet all the players and that they would set him up with some tickets next season. 

Kendall Williams and Demetrius Walker and Steve Alford (UNM Basketball Coach)

Dillon with his signed Lobo ball

Kendall Williams and Demetrius Walker and Steve Alford (UNM Basketball Coach)

The preliminary results of Dillon's second lymph node biopsy are in.  I felt like a different diagnosis would be good news.....well no such luck.  It looks like the second lymph node is very clearly T-cell lymphoblastic lymphoma.  The pathologists are doing some extra fancy testing to check for some genetic coding or some such thing to see if they can figure out why this lymphoma has not responded to the usual first cycle of treatment.

Soooooo....full steam ahead.  The first of two new chemos started today.  He will get it for 5 days with 3 days off and then 5 days of the next type of chemo (which is a 3-chemos cocktail  called I.C.E.).  Too bad we are talking about toxic, debilitating medications and not some lovely summertime drink (hehehe).

The mood swings, anxiety, anger, frustration, and general miserable state of emotions are rearing their ugly heads after 3 days on the new steroid.  He has 11 days to go before he gets a break from that.  They are going to be starting an antidepressant tonight to help keep Dillon from going down the slippery slope of depression.

I have my smoothie fixins ready to go (thank you Sandy, Anne, and Raya), a salad washer, a new fancy pants blender is on its way courtesy of a few friends pitching in, and my exercise clothes are washed and ready to go.  I am very excited to get my nutrition back on track after a week of crazy food intake, which includes eating at the oddest of hours (Dillon and I had a ball the other night at 1:30 a.m. eating a snack of popcorn, yogurt, and apples.....we laughed and laughed about what Sean and Luca would say if they walked in at that hour and saw us chatting up a storm and eating away)).  Exercise seems a little more challenging in the current setting....but I am getting pretty friendly with a couple of the nurses and I am gonna ask them to open the stairwell for me when Dillon is napping and I can climb 6 flights of stairs a few times a day to get my cardio working again.

The bone marrow transplant process is beginning.  There is a lot of paperwork, blood work, pre authorizations, and a bunch of other stuff to set up. They told me today that Dillon is on the fast track.....that is a good thing right (like at Disneyland the fast track means you get to skip the lines and get on the ride first :)  Oh, that's right, this is not an amusement park, this is a high-tech, scary hospital where they are desperately trying to save my boy's life.


So, we forge on, strong and determined.

Oh my sweet, sweet Luca

Monday, June 25, 2012

My brave and ever loving Luca asked such a poignant question over the weekend.... "Mama, how old will I be when brother gets better?" With his chubby little hand wrapped in mine as we walked the halls of the hospital....I gaze into those big blue eyes that hold more wisdom than his years and I choked out an reply....... "I don't know baby, I don't know."

New Band in Town

Sunday, June 24, 2012

The Bald Buckley Boys

These 3 amazing musicians have been rocking together their entire lives.

Day of Release and Refresh

Sunday, June 24, 2012

I know all of you wait to hear how Dillon is feeling and how his days go.  So I will start with that tonight.

Dillon had a day full of coughing, which was exhausting and dehydrating.  The doctor is fairly certain that the chest tumor is the culprit, not that he cannot breathe but that all the mucus tissues and such are irritated and thus his cough reflex kicks into overdrive to cope with that.  The mass is now so big that it is extending up next to his trachea and collar bone.  If Dillon lies flat it can be seen and felt.  When he came out of surgery on Friday I saw the bulge but I really had no idea it was THAT big and that close to the surface.  It actually took my breath away and I was frightened and nauseous at gently feeling it with my fingertips.  With the significant increase in coughing today, the doctor decided to go ahead and start a high-dose steroid for a few days to see if the mass will shrink in size a little while we wait for the new chemo cocktail to arrive.  We still don't have the final report on the bone marrow or the lymph node but I am told that they did see some questionable cells so another level of analysis has been ordered, which takes 5 days.

Otherwise Dillon had a great day.  There were a few visitors today.  He is generally reluctant to accept visitors but I insisted he not "hide" from his friends.  They ended up having a great time and the visit lasted about 5 times longer than I expected....so that was a great distraction and a great motivator.  Below you will evidence of the love, devotion, and support that Dillon's buddy Finn has for him.

Another bald head, in solidarity

These boys were so genuinely happy to be together today

Dillon requested a stuffed sopapilla this evening with green chile on the side.  He ate about half and enjoyed the spice....which is a huge step in the right direction.  He has been eating only very simple and plain foods, so to have a craving for something stronger and then to have it be something that he used to eat routinely just made my heart rejoice.

He also had his port access changed this evening.  They remove the needle and tubing that supplies his fluids, nutrition, and medications and then place a new one, to help avoid infection.  For about 2 hours this evening he was tube, cord, and wire free!!!! I'M FREE he cheered and asked to go for a walk.  He walked farther this evening than he has all week.  I took a wheelchair with us just in case he got tired.  He did, but he wanted to keep riding around even after his legs could take no more strain.  We cruised downstairs on the elevator, went outside for some fresh air, watched and listened to the helicopter take off, and then headed back upstairs for some R&R before they had to re-access the port.  He did so very well in expressing his fear and his worry and his anxiety tonight.  I also did well in being empathetic and then distracting his mind.  He only got upset right before the actual needle poke and then it was just a few tear-eyed blinks, a ragged expression of his disdain for the negative anticipation that builds in his brain....and then he was done. 

All in all it was a fabulous day.  Dillon's Gramma Marylin (Sean's mom) is also here for a few days sitting in with Dillon and entertaining Luca.  Nana and Grampy delivered some more of Dillon's favorite PJs, plus a surprise of a couple of very cool pillow cases.  We are personalizing the room more this time around because of the extended stay.  I told Sean when we get out of this place we are gonna have to rent a U-Haul to get home.  I expect each and every one of you to be here on that day to carry boxes for us.....hahahaha!!!

Oh yeah....when this happened earlier I said to Dillon...."I should put that in the blog" so here I am doing just that.  Luca L. (a classmate of Dillon's) and Finn brought Dillon some balloons today (By the way...they DO NOT allow latex balloons in the hospital at all).  One of the balloons is a great big cute monkey face.    This evening while I was sitting with Dillon on his bed mentally preparing for the port access needle, it suddenly became a little darker in the room.  We both looked up and saw that the big ol' monkey balloon had floated over the light in the ceiling that is directly over Dillon's bed.  I said...."Hey Dillon, it was an eclipse!!!"  He laughed because the last time we were here there was an actual eclipse (remember that in May??) and we went outside and watched it.   Just a little funny thing that happened today.  Like the fireworks last night....the loveliness of regular events in life. 

Parents....you might want to read this first before you share with the kids

Saturday, June 23, 2012


The reason I title this as I did is because this is a lot of technical and VERY scary information.  I am not sure that the kids, the classmates, should have this information without some teaching and much conversation.  I don't want anyone to be exposed to more than they should.  

There are so many details and so many questions and unknowns every time we have a meeting with the oncology team.....it is difficult for me to decide what to share, what is important for you to know, and what is just TOO much information.

You now know that Dillon is MUCH MUCH worse than when first diagnosed even though he had 4 chemo treatments and 28 days of steroids.

We are holding our breath and crossing our fingers for the pathology report on the second lymph node biopsy.  I am actually hoping that it is a different type of cancer....it just feels like if they got it wrong the first time, that would explain the complete failure of the first course of treatment. It feels like if it were something else then the outlook would be better.  I am not sure that is rational, but it is how I feel.

One of the pieces of horrific news that made me shut down completely yesterday was the statistic of survival in kids who have this situation.  I am NOT going to share that.  We all need to assume that it is 100% because we all need to be strong and believe 100% that Dillon and all the other kids in his situation will prevail.  They will all kick this cancer and go on to live full lives.  I cannot acknowledge the absolute gut-wrenching fear, a fear so deep and so brutal that it made me have physical pain yesterday afternoon and evening.  That number, that statistic is leaving my head and we will not speak of it...because it does not matter.  We have our Dillon here with us and we will keep him with us regardless of the statistical data!!!  My dear sweet brother lent me his strong shoulders and his ears last night; he is holding me so well and so lovingly.  He listened, empathized, encouraged, and just helped guide me out of my darkness last night.  Thank you Todd....I will never forget that!!!

Drum roll please......................the tentative plan, assuming that the diagnosis is correct and the second lymph node will reveal the same thing as the first one.  Bear in mind that the details may change if the diagnosis is different (the names of the chemos maybe, the frequency or dosages) but the overall big picture is estimated to look like this.....please keep in mind, I am not using the technical terms and names and jargon because I don't want to misstate or confuse things.

First***Dillon is at extreme risk of respiratory distress.  In other words....he may begin having trouble breathing at any time.  So the goal is to get him through this weekend safely.  IF he were to have trouble they begin with oxygen, not letting him lie down or exert himself, possibly some steroids (which normally melt lymphoma like ice and we know what the last batch did, so that is not promising), and the very very very last resort would be a dose of radiation to his chest to shrink that mass IMMEDIATELY.  But radiation is dangerous and has far-reaching long-term negative repercussions so that is not something they do lightly.

Second***A new chemo has been ordered.  It is not something that is on hand here at the hospital...it is supposed to arrive on Tuesday.  He will receive this chemo (which is 'stronger, more toxic, worse side effects' than the first set) for 5 days in a row.  He will then receive a second new combination chemo for 5 days.  So that is 10 days in a row of crazy high-dose broad-spectrum chemo.  His blood counts will drop fast, he will be quite ill, he will be extremely susceptible to infection, he will need routine blood and platelet transfusions.

Third***11 days of no chemo and during this time he will be given a medication to help his blood counts to recover so he is not in such danger and so he can gain some strength and energy back during these days off.

Fourth***Scans and tests will be repeated to evaluate progress; i.e. obviously the goal is shrinking of mass and lowering of percentage of bone marrow cancer cells.

Assuming that all goes as stated...he will then repeat that 2 more times for a total of 3 courses.

The information I have right now is that we have to be here for the first 21-day cycle....but my brain tells me that I bet we will be here for all 3.....YES you are reading right.  We could be here anywhere from 1 to 3 months.  I cannot explain it, but I am at peace with that.  Maybe it is the fear of having respiratory distress at home and not being able to get him to a hospital fast enough.....maybe it is the fear of the germs and stresses of home....but I am okay.  I know it will be long and tedious and frustrating.  I know that I will need to allow (and Dillon will need to allow) someone else to sleep here sometimes so I can go home to my Luca and my Sean.  But I am mentally and physically prepared for this.  We are setting up our little home. I am getting my exercise DVDs and clothing, more supplies, clothes, some rudimentary food preparation items including blender and possibly a small fridge so I can get back on my green smoothies and be healthy and strong while I tend to my sweet boy. 

Fifth ***The next big BOMB.....Dillon ABSOLUTELY REQUIRES a bone marrow transplant.  It does not matter if we get a new diagnosis (which will undoubtedly be some rare form of cancer) or if the diagnosis remains the same.    This is the second piece of information that turned my world upside down yesterday.  They do not do bone marrow transplants in New Mexico!!!  The default facility is Denver because of proximity but they assure us if there is another location that our insurance would cover we are free to go wherever we would like . There are several schools of thought on this.  Some people want to research and find the hospital with the best statistical outcome or the most recognizable and "famous name."  Some people want to stay as close to home as possible.  Some people are willing to go further from home to be in a city where they may have family support.  We are in the process of figuring out which group we fit into.  There are valid, significant, and important positive and negatives for each scenario and we just have to weed through all of the information and make an educated decision.  The search for a bone marrow match will begin fairly soon but we don't have to "pick" a location for a few weeks.  The bone marrow transplant processes is EXCRUCIATING for the child.  Not the transplant itself, but the preparation, which includes the most insane doses of chemo....it will completely kill every single bone marrow cell in the body.  During that process and for months afterwards the patient is kept in isolation.....one parent can stay but is encouraged to never really leave, as that can bring in germs from the outside.  It is not as intensive as the old "boy in a bubble" but it is pretty darn close...for weeks and weeks....away from home...away from my other 2 favorite boys; Sean and Luca.  This, my friends, sounds UNBEARABLE to me!!!  I know, people do it all the time; it is quite frequently successful with children and adults who not only survive the process but go into remission and become cancer free.

My goals right now:  Stay present with Dillon; don't fixate and worry about what is next; one day at a time.  Enjoy what we have now right here in front of us.  Appreciate the small things and everyday things.  Stay healthy myself...get into better physical condition so I can not only endure this long process but can thrive and come out the other end better than when I went in....just like Big D.

Right now this very minute, I am looking out our window toward the sports complex near UNM (The Pit and Isotopes Park).  There are fireworks!!!!!!  Big, sparkly, colorful----yet silent----fireworks.  Oh, how I love that I am alive and present with my strong courageous boy right here, right now. 

Safe and sound

Friday, June 22, 2012

Just a few words after an unbearable day. Dillon was in moderate spirits up until about an hour before surgery. He then withdrew and became silent. There were no complications with his breathing and he recovered relatively quickly. After a dinner of OJ, cheese quesadilla, and apple, we read together for a while and then he drifted off to sleep. Biopsy results take days. Bone marrow results probably on Monday. We got news of the next few steps and we are overwhelmed, terrified, and confused. We need to share with immediate family and then I will write about it. Suffice it to say that today my strength is wavering, cracking......my time with Luca tomorrow will no doubt shore it back up. I pray for a peaceful night's sleep for all of us!

How is this even possible.

Thursday, June 21, 2012

We got yet another blow today-------a knock the wind out of you, wobbly kneed, need to sit down kind of blow.

We got the results from Big D's bone marrow biopsy, which was done on Tuesday (which was scheduled as part of the original plan...nothing new there).  His bone marrow originally had 1.5% cancer cells......it now has 13%.

The doctors were surprised at his CT results with the mass growth, now they are shocked, flabbergasted, stunned.  This simply DOES NOT HAPPEN when a person is on chemo and steroids. 

NOOOOOOOOOOOOOO is screaming through my head.  Not my boy.  Not some crazy, scary, abnormal, rare, unheard of cancer that is growing out of control even in the presence of toxic drugs running through his veins for days..... NOT MY BOY!!!!!! 


There are yet more questions and more options.  I will outline some of that tomorrow....

For now, Dillon is going back to the operating room for a second lymph node biopsy tomorrow.  The question is.....do we have the correct diagnosis.  This mass and the bone marrow are not at all acting like lymphoma.

Has it morphed into something else?  Was the original diagnosis just wrong?  Is this some new form of cancer that starts off looking like lymphoma and then ....something else.

UNM is part of a conglomerate of hospitals that span the globe, all working on and sharing information, protocols, outcomes, failures, everything with about 200 other world class hospitals.  This group is called the Children's Oncology Group.  Go to their site and check it out.  http://www.childrensoncologygroup.org/

The fact of the matter is that there is some doctor somewhere that has seen this and treated it successfully.......these UNM docs just have to find that doctor.  Lots of research, questioning, interviewing, studying, collaborating.  The protocols and treatments that are used at UNM are used at all 200 of the other hospitals, which include Baylor in Dallas, St. Jude, Texas Tech, MD Anderson, Cedars-Sinai, Kaiser Permanente, Cleveland Clinic, Mayo Clinic.  If you have heard of it....they are part of this group.  These doctors are going to find the answers and construct a plan to treat this sweet strong boy.

Speaking of The Pickle.  He had a FANTASTIC day.  He had a visitor that he really enjoyed, he ate a little, his pain is minimal, his spirits are high. He laughed and talked today, he was interacting, worked hard on going for a walk and washing his hair (which yes....is falling out rapidly, finally).  Tomorrow morning actually, before his surgery, we are going to shave his head.  The shedding is driving him crazy with itchiness down his back and in his eyes all day......imagine that 'after a haircut feeling' with all those little pieces of hair all over the place going on for weeks.  NO THANK YOU.  So, tomorrow when Sean and Luca get here we are gonna have a shave fest and Dillon, who actually despises haircuts, is fully and wholeheartedly looking forward to it . He has been gifted some cool head coverings, some cousins are knitting more, and he is going to have a great 'wardrobe' for his head.

Soooooo we are floored.....but we have allowed the shock and dismay and fear to run its course. We have regrouped and gathered ourselves spiritually and emotionally and we are again at the end of this day rock solid, positive, upbeat, and ready to fight this thing like no one else can.  I said to my dad today...."If there is a family who can close ranks and beat this thing with love and support for all of us....this is the family....
WE CAN DO THIS!!!!!!
WE WILL DO THIS!!!!!"

Dillon hanging out with the new Buckley IPAD

Dillon trying out one of his new head covers before tomorrow shaving event

Knocked to my knees

Thursday, June 21, 2012

In a state of shock, disbelief, despair, unimaginable fear and worry, heartbreak, panic.

Dillon's CT scan results are back. The doctors expected full remission, which means that all masses and lymph nodes are gone......that is the usual course of things, 98% of all cases. The other 2% will have some mass left but smaller, shrinkage. In a very very very rare case the mass will grow up to a maximum of 25%, but that is so extremely rare.........

Dillon' mass is 43% larger!!!!!!!! It is now compressing his airway down to about half of normal, his left lung is compromised, his sternum is being pushed on and is beginning to bulge out from the pressure, last night he had difficulty eating so seemingly there is some sort of effect on his esophagus. I cannot breathe, I cannot think, I cannot focus. We are scared, terrified more than there are words for. Have we lost faith......NO. Is this the end of the line......BY NO MEANS. Do the doctors have a backup plan......not yet. They are conferencing, researching, studying, talking on an international level to figure out the next step. There WILL be a next step...a plan of attack....a researched and proven effective method of treatment......it is just that they have to find it. The questions we all have and the unknowns and unanswerable questions at this point on our part and the doctor's are innumerable. Hold tight everyone. Pray,pray,pray.....send this sweet boy all of the healing powers and courage that the universe has to offer......he needs it now more than ever!!!!

Losing time

Monday, June 18, 2012

It is so surreal to be here again.  It is like we skipped May and now June.  I just signed some admission papers and the date says it is June 18.....what????? June 18...it was just May 18 a few days ago.  How did that happen?

Looks like we will be here AT LEAST a week, maybe even 10 days, depending on how things go.  My parents and Sean's parents are immediately available to help....Sean is working and enjoying time with Luca, and will come see D as well.  Its a darn good thing I over packed.  When we left the house with the pile of stuff yesterday I felt a little silly.  What if we only stay overnight and I packed a half ton of stuff.  When we arrived at the ER at UNM yesterday you should have seen the people watching us go by with our suitcases and pillows.  I imagined them whispering....hey, those people missed their turn to the airport and ended up at the hospital :))

Luca is in tie dye camp this week.  He had wavered on wanting to go.  He had such a blast being his completely physical self last week in circus camp that he was a little skeptical about a crafty camp this week.  He said, "You know mom, I am not the kind of guy who likes to sit around all day doing crafty stuff." Well I got a call this afternoon from a pizza guy who said I had forgotten to pick up my pizza last night and that I was going to have to pay extra for that....OH NO that is not a pizza guy, that is Luca.  His infectious laugh burst through the phone and my heart soared with the joy that this boy can bring so easily.  He had news to share....after the pizza order was worked out (wink wink).....he LOVED tie dye camp.  He rattled on and on about how he did it and what colors and then he listed the items that he came home with today, and it is only the first day.  SUCCESS!!!  Of course, in classic Luca style....he inquired about brother and when I said he was "medium" not great but not terrible, Luca's voice dropped and he sounded sad.  "Poor brother.  I hope he feels better tomorrow."  Luca's first question last night when I spoke to him after we were admitted to a room was.....what color is it.  There is yellow, red, and blue and Dillon said he did not like the red last time we were here.....so Luca wanted to make sure Dillon was in a room that was comfortable and soothing to him.  In fact, he informed my mom that he thought if there was a kid in the room D had last time, that kid should be moved because that is "Dillon's room".   Sweet, innocent, powerful love of little brother.   By the way.....the room is.....you guessed it.....RED.

Dillon is sleeping a lot today.  He is now on IV nutrition as he cannot and/or will not eat because of the sores in his mouth.  He is also on a pain medication pump for a constant low-level of pain medication to take the edge off and he can then "boost" once every couple of hours as needed by pushing a button.  He feels pretty good about the fact that if he needs more medicine he is in charge of just doing it and not having to ask.   No, no...he cannot get too much.  It only actually delivers a dose once every couple of hours.

It is almost 8 p.m. and we have not yet gone for the CT that was supposed to happen at 6 p.m.

Tomorrow is still chemo, spinal tap, and bone marrow aspirate.  We are all anxious to get those results to see how 'effective' this first portion of the chemo protocol was and what the next step is on that front.  The other mystery is still this infection and an unusually high heart rate and the darn mouth sores.

Good news....and bad news.....

Sunday, June 17, 2012

My kids always want the bad new first because they feel like they can digest the disappointment and be overjoyed afterward with the good news, which makes the disappointment fade away.....so here it goes.....

We are back inpatient at UNM.  Dillon has an infection in his blood....it is not raging, his temperature is not crazy high,  but it is in there and he is fighting like mad with his last few white blood cells....but it just is not enough.  We are here for more antibiotics, fluids because he got dehydrated from not drinking enough because of the pain in his mouth, and observation.  They really do not know where the infection came from.  It could be the open wounds in his mouth, it could be his port site, it could have been something he ate, it could have been a germ that was floating in the air at any number of places he has been the last few days......no way to really know....but we are here, they are getting a handle on it, and he will ultimately be fine.

The day was long, tedious, painful, frustrating....... we are finally settled.

Now the good news.....
We had all those tests tomorrow and Tuesday....well that is all A LOT easier and more comfortable inpatient.  Instead of having to wait in various lobbies, waiting rooms, and exam rooms we get to be in our room with our stuff, a bed, TV, snacks, games, books, phone, shower, etc.   

I'll let you know what is happening tomorrow.

Relinquish the reins

Sunday, June 17, 2012

It is Sunday morning.  Happy Father's Day to all you Dads out there!!!

I have stepped aside today and let Sean be the Go-To guy for Big D.  It is good for everyone.  I had a few minutes to relax before I began working, which is actually a lovely distraction for my mind.....to be completely focused on something else, outside of the family, the house, the cancer....

Sean and D went to St. Vincent ER earlier than expected because we forgot to get pain medicine yesterday.  The doctor informed us that getting his pain under control and keeping him comfortable is much more important and significant than the exact timing of the second dose of antibiotics....so off they went...

Sean sent me a text....

Insertion 20 min ago.  Antibiotic and saline.  D Awesome!!!

So, maybe the silver lining to this little infection scare and ER extravaganza is that getting his port accessed multiple times in a relatively short period of time (3 times in 3 days) is what he needed to get over the fear and anxiety about it.  Maybe having a week in between accessing was long enough for his brain to forget that it was pretty easy and painless and take over with the rumination and obsession about the needle.  These multiple accesses might dig into his psyche and get his brain to realize that it is not as bad as he anticipates...maybe, just maybe.

Breathe out.....

Saturday, June 16, 2012

Friday ended without any nausea or vomiting.  YIPPY Dillon....you made it through Day 3......until......

At dinnertime we noticed Big D was being very quiet and chewing very very carefully (more so than normal).  He also seemed a tiny little bit warm to the touch....hummmmm I think to myself.....is there something going on here or am I just hypersensitive and over-alert.

He woke in the morning shaky.  He proclaimed that it was because he was sooooooo very hungry.  Okay, that seems reasonable.  Except that he was not talking much at all, had on his thick winter PJs (Dillon is a warm-blooded lad who is usually hot even when the rest of us are comfortable), and he was actually physically trembling, not just a little but his entire body.  He tried to eat a bagel/egg sandwich and was having a terrible time chewing it.  I suggested to him that with the sore tongue he might want to eat soft, non-chewing things like yogurt or cream-of-wheat.  He agreed to both.  He ate and ate but was very very quite, would not respond to questions, and was STILL shaking.  The other symptom that was yelling out at my mom's intuition....his cheeks and face were puffy.....I mean really super abnormally swollen...and one side of his face was sorta pinkish and his eye was a little swollen.

He finished his food and went straight back to bed with his thick PJs AND all of his covers on.....RED ALERT, RED ALERT....now this is definitely not the Dillon I know. 

A call to pediatric oncology at UNM.  Get him to the ER ASAP!!!!  NO, not the Albuquerque ER, that was too far and too long...he needs to be seen immediately.  UNM called St. Vincent and when we arrived they were waiting for him with a bed and the appropriate paperwork.  I guess they take kids with cancer pretty seriously.....what a relief because my past experience at the St. Vincent ER has been less than stellar.

Long story short.....5 hours in the ER, blood tests, exams, and no 'real' infection found but obviously something going on inside.  They did discover that his entire mouth and down the back of his throat have lesions on them.  The ones on the sides of is tongue are particularly cavernous, just huge, and terribly inflamed, and red, just really really painful.  Figuring this mass of open wounds in the bacteria laden mouth was probably the source of the bodily symptoms of infection even though the blood work did not show infection, he got IV antibiotics and will go back to the St. Vincent ER to get a second dose tomorrow.

Poor kid came home and slept all afternoon.  Got up to eat some watermelon and beans after he tried pizza and found there was NO WAY he was going to be able to chew that.  Right back to bed even though Sean offered to watch a movie with him on the couch.

My Mommy NON-medical trained brain says that the little bit of immune system he does still have at this point is fighting like crazy to combat this bit of infection that is oozing in his mouth.....and the antibiotics should help kick it in a day or two.

Breathe in......breathe out......that is all I've got right now...just my breath and my boy and we both gotta hang on tight for this roller coaster ride.

Day 3......breathe in........

I am treading lightly, giving in to many requests and overlooking minor responsibilities, all in the name of not pushing Big D any more than absolutely necessary in any way today.....

It is 2:51 p.m., he is sleeping after an outing to watch his brother performed at his circus camp, then lunch.  No nausea, no vomiting, just very tired......

Breathe in.....hold...............(I will exhale later, when the day is done :))

Luca at Circus Camp

Luca performing at Circus Camp

Doing okay...different location

Thursday, June 14, 2012

Dillon requested the proverbially change of scenery today.....so off to Nana and Grampy's he went.  He informed my mom the day before that he was craving buttermilk pancakes, so when I dropped Big D off this morning she whisked him away to IHOP for pancakes and an omelet.  When they got home he went straight to bed...you know sitting up in a restaurant and then digesting food takes more energy than you realize....No Seriously.....that amount of up and about just wipes him out.


D and his grandparents had a great rest of the day that included eating, shopping at a nursery, picking up Luca from circus camp, and playing pool in the garage.  No nausea, just fatigue today, but his appetite remains strong.

I worked most of the day today in between phone calls from home health nursing to set up at home IV fluids for monday night.  Yikes....I have to be the one to hook and unhook the fluids.  This is in response to and in preparation for a whole battery of tests that are coming up on Monday and Tuesday.  Can you believe we are at the end of the first cycle/round of the protocol.  The results from the tests will determine the next course of action; what kind of chemo and other medications, as well as how often.  One thing we know for sure is that tomorrow (friday) is his last dose of prednisone, which is an extremely potent steroid that he has been on for the past 28 days.  They say once that works out of his system, then his moodiness and irritability and insomnia should dissipate.  It is terrible tasting stuff that is accompanied with another medication to counteract side effects so the Pickle is SUPER excited about it....2 less things to swallow...YIPPY!!!!!  We might stay at Ronald McDonald House Sunday and/or Monday night....but Grampy suggested a hotel as D has been cleared to swim in an indoor pool that is not crowded.  He is not very enthusiastic about this, as I am sure it just sounds like a lot of work and discomfort to him (he is such a home body and he really loves his room and his bed and his own space).  I just feel like having a base to rest at between the crazy procedure/treatment schedule on Monday and Tuesday would be more comfortable than sitting in waiting rooms and or cruising around in the air conditioned car all day long waiting for the next appointment time. 

Luca has been participating in circus camp this week at Santa Fe Waldorf and is wound up about his circus act performance tomorrow.  That kid learns so incredibly fast.  He learned to juggle, pogo, unicycle, spin plates, jump rope and hula-hoop at the same time, and many other tricks.  You know those people who have such strength and such a command of their body that they are good at everything they try....well that is Luca.  His physicality is definitely one of his assets and he uses it to his advantage. 

Next week is tie dye camp....an entire week of tie dying stuff.  One of Dillon's friends was in that camp this week and she actually sent a couple of really cool tie dyed napkins home for Dillon as a little gift.  Super cool!!!!  Thank you Emma!!!

We all went for a stroll to the mailbox and now the boys are requesting a little dessert after our super yummy chicken pasta salad dinner.

Tomorrow is the dreaded day 3 after......we will see what it brings.

Rebound

Wednesday, June 13, 2012

Again, Dillon has made an astonishing rebound.  After the trials and tribulations of yesterday, today he is doing great.  No nausea, no vomiting, not even that tired.

He and I dropped Luca off at Circus Camp.  Then we went to Trader Joe's to fulfill some of Big D's interesting food cravings.  This is a boy who dislikes fish and seafood; except for calamari, which I am pretty sure is just a vehicle for the fried batter and the yummy sauces that usually accompany the dish.  So when he says..."Mom, I really want some smoked salmon."  I did a double take.  What, salmon....are you kidding me???  Seriously Mom, you know that kind that is sliced thin and is sooooooo good on a bagel.  I want that...and salad.  I cannot get enough salad...with feta of course."  SO off we go to Trader Joe's.  The ever conscientious Dillon advises me that this type of salmon is quite expensive so we need to just get the small package.  How kind, the boy is trying to help us not break the bank :)

When we got back home he promptly informed me that he was going to the neighbor's house to watch a movie and play with the boys (they have 2 boys roughly the same age as ours and they are all great friends).  Fantastic...willingness to socialize....a step, or rather a leap, in the right direction.

We have had a lovely afternoon of salads and conversation.  Dillon and Luca just went for a stroll through the neighborhood so I could finish my work...and this post.  We are going to Luca's hockey scrimmage this evening at Chavez Center and Dillon is enthusiastic to come watch brother on the ice.

Big Breath In!!!!

Wheeewwww.....glad that is over....again

Tuesday, June 12, 2012

Dillon started the day quietly.   He did not, like last week, refuse to get out of bed.  He took his meds and informed us (Sean took the day off so both of us were present today) that he NEEDED a breakfast burrito.

He ate in the car, quietly but satisfied.

When we got to the hospital, as he did last time, he got out of the car and walked VERY slowly toward the hospital.  Note that he was walking just fine at home the evening before and that morning when getting ready to leave.

By the time we got to the clinic his mood had turned SOUR!!!  It is really indescribable, but just know it is wholly and completely unpleasant.  He wanted nothing to do with anyone.  Sean and I offered many suggestions for distraction and passing the time while we waited to be called back....but everything was greeted with a snarl and a snide remake that was spit from his lips in disgust that we even had the nerve to speak to him. 

Sooooo....in we go to the doctor's office.  (There is a regular sort of doctor office visit with an exam and discussion before we go into the chemo area).   This poor child's anxiety was such, at this point, that it was palpable in the room.  You could feel it emanating off of his body, out every pore, with every breath.  Every muscle in his body was tense and rigid.  He sat perched on the edge of the table, unwilling and unable to lie back, relax a little, take a deep breath.  It hurt me to even look at him....he was in such distress inside and so completely isolated and shut down.   Then in pops the psychiatrist to talk to D about his anxiety....OH MY GOSH....if ever you saw an evil eye cast upon someone with complete disdain....this was more severe than that!!!  At first I felt embarrassed and ashamed of my child's behavior; how dare he act so toward an authority figure who is perfectly pleasant and friendly.....then in 1 single breath I realized....that is my parent ego talking to me and that ego has no place in this situation.  So then I just felt so very sorry for my boy having questions hurled at him by YET another doctor.  Personal questions, emotional questions, questions about feelings and fears....how dare you violate my boy like that!!!!  Okay, so Sean and I requested the psychiatrist because we worry about Dillon and his emotional distance and his anxiety....but I thought it would be like a counseling session in some office someplace at some other time.  I did not know they would just pop in, totally clinical, stand by the door, impersonal, not even very friendly, ask a bunch of questions...answer the questions for him because he refused to talk....Just not what I expected.  The glare in the eyes of my boy did not leave.....

Now we head up to the chemo area.  He is trembling, not talking, just so very fearful.  The nurse comes and begins the process of accessing his port which involves the needle.  You all know how he feels about that!!!  Well it was no better today.  He cried and clung; I whispered in his ear, we gazed into each others eyes; he hugged his elephant in one hand and his prayer shawl in the other.......and then it was over.  Breathe baby, breathe!!!!

The old Dillon magically appears after that needle part is over.  He starts talking, he asks for water, he needs the bathroom,  he asks the nurse about the video games that are part of each chemo chair, he invites his Dad to join him in a Star Wars battle....

When we finally left he was famished.  Ate yet ANOTHER chicken quesadilla with sour cream on the way home.  He walked in the door, flopped on his bed, and was sound asleep until dinnertime.

Believe it or not, today was better than last week.  We were at the clinic for 2 hours less...so we got home about 3:30 instead of 5:30.  Dillon ate today.  Last time he would not/could not eat and got very very low blood sugar and energy and mood, etc.  He was able to say today that he realizes he should eat during the chemo even if his belly does not feel hungry, because he hates that over hungry, low blood sugar feeling.   

Challenging day....YOU BET!!!
Worst day ever....NOT EVEN CLOSE!!!
Dillon learning some new coping skills......PRICELESS!!!

Lovely couple of days...and this evening

Monday, June 11, 2012

Big D has spent the last 2 days at my parents' house.  He wanted a change of scenery (as he puts it) and I certainly needed a break from the constantness (is that a word???) of being with him.....he also informed my mother that he needed a break from me.  He actually told her...."Mama worries about EVERYTHING!!!"  My mom had a nice little chat with him that parents worry about their kids all the time no matter what, no matter how old, or how small the problem.  She told D about her worries for me and he was quite shocked at that....and amazed at the perspective...oh yeah, Nana is Mama's mom.

So he had a great couple of days there, which included plenty of mood swings, grumpiness, insomnia, and other stuff....but the beauty of me not having to be present for it was huge.  I know, that sounds terrible....but I think you can all appreciate the level of stress that is involved in just the day to day interactions with this kiddo....none of which are his 'fault' but they are exhausting and can become extremely frustrating....so the break was welcome.

He came home this afternoon having been well fed but ready for more.  A friend made us dinner tonight and there was a fabulous salad included, of which Dillon ate about half (mind you it was for 4 people...so that is a lot of salad).  He has these terrible sores in his mouth and on his tongue (chemo side effects) but he swishes with this numbing mouthwash and he chews very carefully and slowly but he eats and eats and eats....which is such a relief after the relatively large weight loss he had there at the beginning.

After our lovely dinner Dillon came and found me, requesting me to prepare his meds.  It was only 7 p.m. and we had just finished eating.  It was sooooo very  weird.  He usually tries to delay meds until the very last minute and then he is frustrated in taking them because he is tired and it takes him a while and...well you get the idea.   He informs us all that he is going to take them faster than ever and he asked us to watch.....usually he forbids anyone even in the same area of the house when he is doing this...so again....weird.  With his bright quirky little smile he says..."Nana and I found the PERFECT chaser for my meds."  He proceeds to get out feta cheese.  Seriously Dillon, feta???  Yes Mom, just watch.  So, he pounds down his meds, 1, 2, 3, 4 and then in goes a big ol' scoop of crumbled feta.  He chews and chews then swallows....motions for a cup of water...sips and sips...and BAM, done, just like that.  I wonder if those college frat boys know how awesome feta is after a shot of something strong...HAHAHAHA!!!

The 3 Buckley Boys are off for an evening stroll while I have some peace and quiet in my office.  The anxiety of "the night before chemo" has not reared its ugly head as of yet. Dillon and I agreed to actually head that off at the pass and he took an extra medication with his feta extravaganza to help him NOT get to the anxiety state that he has in the past.  He is SUCH a reasonable boy these days and learning every day what helps him to cope.  He hates an extra med but he knows that it can prevent the terrible terrible feelings that crop up in the late evening the night before a procedure...so he agreed wholeheartedly to take it.  WOW....again and again this child amazes us all.

Tomorrow....chemo #4.

Dames for Dillon - Benefit Concert

Five AMAZING musicians are performing a benefit concert on Dillon's behalf

June 28 at Santa Fe Waldorf School at 6 p.m.  

It promises to be beautiful and fun.  

Join us!!!!

Lots of the Buckley Clan will be there....come say Hello :)

Big D hits the press

The Santa Fe New Mexican has done at article on Big D.  The link is below...or go to www.santafenewmexican.com and search 11-year-old boy battles cancer.


http://www.santafenewmexican.com/HealthandScience/Dillon-s-diagnosis-

Thank you for all your support.

We can feel the prayers and thoughts and positive energy flowing our way every single day!!!

The Buckley Family

ALSO>>>>>>

I was able to go to one of Luca's basketball games this weekend. I have missed the entire season so this was a special treat.

Luca going up for a shot

Pre-game chat with the ref

Taking a breather

Lining up to meet the other team

No sooner said....

Friday, June 8, 2012

About 3 minutes after I hit the publish button on that last entry about day 3....Dillon arrived in my office with his bucket and the telltale  green tinge to his face.....

You guessed it.  Darn, did I jinx this day by talking about how good he was and how normal things were earlier?  I was beginning to think that I was delusional, imaging that this would be much "easier" than I thought it was going to be.  What the heck is wrong with me?  Wishful thinking....but now smack dab back in the middle of the NOT easy.

He is now in bed asleep.  His cousin and brother were sent off to the hotel with Uncle Bryan to swim so Big D could have peace and quiet.

He has his new A/C set to 66 in his room and I thought to myself..."Holy Moly our electric bill is gonna be high," and then I thought to myself....what a tiny price to pay for my Dillon to be able to have a soothing, comfortable nap as he sees fit, dark and very cool.

Send those prayers, positive energy, light, love, and strength.  He needs it for the rest of this day.

Day 3 after chemo #3

In the back of my mind I dreaded this day all week long....day 3 after chemo has been the 'sick' day for Big D.

This morning I woke up to a light stroking on my arm and a whisper...."Mama, I am going for a little walk."  My eyes focus on a smiling, bright-eyed Dillon dressed in his usual green striped shirt.  Okay I tell him, take your hat....which he holds up in his hand as he walks away without saying anything.  His body language said...."Got it mom, you don't have to remind me any more."  The doctors told us that kids actually get admitted to the hospital with severe sunburn when they are in chemo...as severe as 3rd degree and there have been many deaths because of this.  WOW, they were not kidding when they said avoid the sun.  One doctor told me that there was no physical way to put enough sunscreen onto Big D's skin to make being in the sun for an extended period safe.  Boy oh boy is this gonna be a long summer: No swimming, no hiking, no parks, no bikes;  unless we morph into nocturnal beings...which I am seriously considering so that D can have some fun outdoor time without the threat of the big bad sun bearing down.

After I listen to Dillon's little flip-flops slowly make their way down the driveway I snuggle with Luca in my bed for a while and we doze a little together.  About half an hour later Luca and I get up and we find Big D in the kitchen with diced tomatoes, grated cheese, and whipped up eggs.  He declares...."I am making an omelet.  I got hungry and I did not want to bother you."  So he proceeded to make himself a lovely 2-egg omelet of which he ate the whole thing.  He even offered to cook one for Luca, who politely refused because he had a hankering for corn flakes :)) Haha. After both boys ate and cleaned up the kitchen, I assigned the task of putting away their laundry.  Dillon was up and at it without a blink of the eye.  Luca on the other hand...NOT SO MUCH.   After Dillon finished his, he heard his brother whining, crying, complaining and generally pitching a fit about the task at hand and very sweetly went into Luca's room and offered to help.  MY Dillon is back!!!  Spunky, self-sufficient, reliable, kind, helpful.

Sean's brother, Bryan, is here from Dallas with his daughter, Sophia.  Dillon wanted "a change of scenery" so Bryan and Sophia swooped in, scooped up the Buckley Brothers, and off they went to Subway for lunch and then to the theater for a movie.  He came home happy and exhausted.

This feels like the most 'normal' day to me.  I am in my office working, the boys are entertaining their cousin, and their uncle is supervising.  There is bickering, laughing, snacks, and a mess....OH SWEET NORMAL DAY!!!!

P.S.....I just realized I did not post since chemo.  Just as an aside, he has had no nausea or vomiting this week.  He has been tired, low energy, but eating well.  Truly not what I expected.  I had braced myself mentally to deal with at least a couple of really lousy days this week.  I feel like I am holding my breath....I am watching my boy so intently...does he show signs of illness that he is not talking about....is he eating, is he drinking, is he functioning.  All is well, given the circumstances.  What a pleasant surprise.  I will hold onto this while it lasts.  Also, in case anyone is wondering....the hair is still here!!! No thinning, not patchy, just regular old Big D rooster in the back, slightly matted on the sides from resting in bed throughout the day, thick brown hair.  Will it go....Will it stay....only time will tell.

Hurry up and Wait

Tuesday, June 5, 2012

After a rough night of anticipation and anxiety D declared that he was actually not going to get out of bed this morning.  Hummmmm, what do I do with that???  He needs at least 30 minutes to take his meds, preferably with something in his stomach,, which takes another 30 minutes....GET UP!!!!  I wanted to shriek....

And then I stop and look at my trembling boy, curled in a little ball under the beautiful shawl that a group of church ladies made for him.....

DAMN THIS DAY!!!!!!!  I just wanted to let him doze and relax and not be a boy who has to get chemo today with all the fear and anxiety and untoward side effects that come in days to follow.

But as you know by now, in reading about this incredible boy, he knows when and how to apply his strength and courage even when every cell in his body is screaming NOOOOOOOOO I DON'T WANT TO.     He drags himself out of bed, puts on his "treatment" shirt (some neighbor friends brought him this super cool black shirt that says "This is my gameface" that he is going to wear each time we have to go to Albuquerque), came out and asked for an omelet and began downing the line of meds sitting at his place at the counter.  No complaining, no emotion, no talking...just down to the business at hand.  That is CLASSIC Dillon.  Hating every minute of all of it, but doing it nonetheless because it must be done.

His appointment in the clinic was at 10 a.m.  They do an exam, talk about how the week went, explain the rest of the procedures for the day, and then they send you off to the infusion lab from the actual chemo.  We did not get into the exam room until 11, the doctor came in at about 11:30.  We did not get to the infusion and begin chemo until almost 3 p.m.  All the while Dillon is so tense with anxiety and fear and worry that he can scarcely breathe.  Once we finally got up to the treatment area and they placed his port access (which involves sticking a needle into the port on his chest) his mood lightened, his demeanor shifted, and he was able to enjoy some video games the hospital has on hand to use during chemo. His fear, it turns out, is all around that darn needle and accessing the port.  We have a very strong numbing cream that we apply when we leave the house, so it was on his skin for hours.  As seems to be the usual course of things...the needle stick took 2 seconds, Dillon thought about screaming but then realized it was already over.  I knew what was going through his mind...."I have been so stressed about this and it did not even hurt."  I have got to find a way to crack through those thoughts BEFORE the whole entire night before treatment and the day of is consumed with angst.

The drive home was a challenge because he was exhausted (partly from the chemo but mostly from the emotional stress and let down of the day).  It was hard for him to sit upright in his seat belt for that hour but a tart lemonade from Starbucks and some cherries off of Nana's tree helped a bit.  (  You might be wondering about his physical self.  He has lost about 6 lbs, which on his lean frame is a lot.  One of the side effects of the steroid he is on is increased appetite and that seems to have kicked in since we got home.....so mama bear is feeding away and learning all the tricks of sneaking extra calories in anywhere and everywhere.)

We arrived home to another wonderful meal, which Dillon partook in.  He has been eating very differently from the rest of the family but last night and tonight he ate what we ate, which was a wonderful thing to see.  He went to his room and snoozed for about an hour and then he had to get back up for meds.  He knew that was going to happen so he did not react to strongly....besides....there were strawberries and whipped cream waiting....

We had to say goodbye to my brother and niece this evening.  It is so amazing to have such a strong, intact, supportive, loving, hands-on family.  All 4 of D's grandparents have been here, as well as my brother and his daughter, and tomorrow Sean's brother and his daughter are coming in.  We are rallying...ALL of US....including all of you with your prayers and love and notes and emails and donations and food and just the amazing amount of positive energy that is flowing in our direction.  We feel it....if you are in doubt about your individual power...WE FEEL IT!!!!!

And so we make it through another day, another night, another treatment.

See you tomorrow

Great Weekend

Monday, June 4, 2012

Dillon has had a couple of really great days.  The weekend went well.  He even stayed over at his grandparents house one night with his brother and his cousin who is visiting from Montana.  We were all nervous....well not all of us.....Dillon was not nervous at all, just excited..... but all of the adults felt worried for some reason.  Then I reminded myself, "Shari, what could happen."  Logically I knew the answer was NOTHING....but my heart was feeling quite tense.  Big D, of course, had a great time.  Got in some basketball on TV, had a nice time playing a little with Miel and Luca, and when bedtime came he assured Nana that everything would be fine, because he was going to sleep in her bed with her.  Hahahaha....that was news to Grampy.  He was immediately and willingly displaced from his bed.  He slept on his new camping cot (which is where Dillon  was 'supposed' to sleep) that he got recently from REI.  Grampy joked that Dillon was allowing him to break in the cot himself before his next fishing trip.  Dillon slept fairly well. He woke up pretty early and declared that he was hungry.  Nana promptly headed to the kitchen and was the short-order chef for Sir Dillon, master of the food.  He returned home a short time later and was quite tired.  His usual statement these days is...."That was EXHAUSTING."

Last friday a reporter from the New Mexican called and did a short interview with him after a thorough interview with me and again....."That was EXHAUSTING."    Mental and emotional energy is no small thing around this house.

Today Dillon had a couple of visitors.  His buddy Finn came by. He brought a birthday gift that the 5th grade parents all pitching in for to get for Dillon.  It was a huge Harry Potter Lego....THANK YOU 5th GRADE!!!! Big D was nervous that it was be awkward, "What will we do, what will we talk about?"  Well those two boys fell right back into their usual mode and were in the garage throwing Pop-Its (little firecrackers that you throw on the ground) and laughing away.  Wheeeww, what a relief.  After Finn left D was so grateful that he had allowed the visit to happen and realized that it was not as hard or as weird as he had anticipated.  Therefore, later in the day when another friend, Miles, arrived with his dad in tow bearing the most amazing dinner, Dillon accepted the visit with more of an open heart and less worry about how things would turn out.

Finn presenting Dillon a gift from the 5th grade for his 11th birthday

The simple fact of the matter is that Dill Pickle has NEVER liked direct attention.  Even as a toddler, he hated people to even look at him.  He would actually bark at the cashiers in stores when they would comment on his big blue eyes, I mean he would BARK, like WOOF WOOF.  Funny to think of that now, but that same energy was palpable in the hospital when visitors would come....he just wanted to bark and bark and make them go away and stop looking at him and stop talking to him or about him and stop wishing him well and stop bringing him gifts...just LEAVE ME ALONE was written all over his face. 

Speaking of anticipation......
Tomorrow is chemo treatment #3 and the anxiety is running rampant around the house this evening.  We have  medication for that too....but getting the kid to swallow yet another thing is close to mission impossible.  I explained to him that if he is unwilling or unable to take all of his medications they will put him back into the hospital with meds via IV....after a bunch of whining and sobbing and frustration he got the darn medicine down.  Then, when Grampy showed up with a fresh baked cherry pie....so all was well again....at least for now.

Tomorrow is our first outpatient clinic-based chemo treatment.  Dillon is unable to articulate his feelings around this but his anxiety this evening speaks volumes to me.  Sean has taken the day off so we can both be present and learn the procedure and protocol for future visits.  Wish us luck!!!

On the upswing

June 1, 2012

Yesterday was so incredibly hard.  It was Big D's birthday.  Dillon was going to go to his classroom with cupcakes for a special snack, making his first 'public appearance' since his diagnosis.  I went into his room at about 8 a.m. (which is late for our house, usually the kids are up at 6:30, so had a feeling something was amiss).  He was still in bed with the covers over his head, which is normal.  When I softly whispered in his ear, he ripped the covers down, scowled at me, commanded me to leave his room immediately and leave him alone.  WOW, I thought, that is new.  Then it all became very clear.  Not only was he still tired and a little nauseous, but I think the emotionality of his upcoming outing just took over.  He informed me there was NO WAY he was going anywhere, not even out of bed.  I reminded him about his classroom visit and the snack delivery and I got this in response.....

CUPCAKES ARE NOT IMPORTANT MOM!!!!  

Right Dillon, you are absolutely right.  Cupcakes are meaningless and stupid in the context of your life right now.

I was actually quite torn because a fellow CHAMPs parent works at Whole Foods and got the cupcakes donated for the class, and besides that, I had arranged with Big D's teacher to pick up all of his desk items and work for the year, as well as the fact that his classmates had more cards and gifts that they really wanted him to have.  Sooooooo, I called in the reinforcements.   A 5-minute conversation with my mom had her dressed without a shower and in the car to our house to 'sit' with Dillon so I could go do the cupcake thing, get the gifts and school stuff, say goodbye to D's teacher.  Inside of 15 minutes my mother was on my doorstep, bright eyed and bushy tailed, ready to take on the dragon that was still under the covers in the back bedroom!!  Nausea, crying, whining, vomiting, not eating, more whining, napping, no energy, true suffering is what sweet loving Nana dealt with all day long. 

I cried more yesterday than I have since we got the diagnosis.  It was just so hard to see Dillon not feeling well, being emotionally miserable because he could not enjoy his 11th birthday, and then all the feelings that come up for us parents around our children's births and the memories of that and the hopes and dreams we have for them as they grow.  It was gut-wrenching and by the end of the day I had a terrible headache and sore swollen eyes. HOWEVER.....

BIG D rallied.....as usual.  He decided he wanted to participate in the family celebration we had planned for him and he did not want it at his house (he informed us all late in the day that he was SICK of being at his house).  So off we went to his grandparent's house about 5 miles from our house.  It was the grandparents, a couple of aunts and uncles, a cousin and then Sean, Luca and I.  My mom and brother prepared a 'taco bar'  (BIG D LOVES TACOS) and my dad made his famous crock pot beans.  Sean's mother brought a cake and the plates and such...so all I had to do was show up.  Dillon and I arrived.  He was able to give everyone a small hug and a smile.  He sat in a chair looking so frail and tired and after about 5 minutes he told his Nana that he wanted her to join him in the back bedroom...."just listening to all of the voices is exhausting," he said.  He spent much of the gathering in that back bedroom with any one family member but not two at a time, it is just too much for him.  He did come out for a few minutes to eat a bowl of Grampy's beans....and then another bowl....and then a request to have some come home with him (and then he ate them again in the morning with his meds....EWWWW!!!!...but what a relief that he was craving something healthy and substantial).  He finally did manage about half a taco and a tiny scoop of ice cream and then he was DONE.  Time to go. When Dillon says it is time to go...it is time to go NOW!!!

After all that activity (leaving the house and talking to a few people) Dillon decided it was in his own best interest to cancel the basketball party we had planned months ago, which was to be held saturday morning with a handful of friends.  He is so wise and stoic and brave and just so completely amazing.  He decided that he knew he would be exhausted and not really enjoy the company of his friends and he is quite certain he would not be playing basketball...so what is the point of a party.  I agreed that we could re-schedule it on any random day in the weeks or months to come and then he could truly enjoy himself and have the party that he imagined in his mind when we planned it all those weeks ago.  No tears, no real disappointment, just a matter of fact decision.....this is just how it needs to be right now.  Man this kid amazes me every single day.

I got the best gift ever 11 years ago....the gift that keeps on giving :))

Today, Friday....we have a whole new boy.  He is chipper and energetic and feisty and lippy and grumpy and happy and it is almost the old Dillon.  He ate several times today in larger quantity than normal.  He drank and drank this amazing yummy drink that his Spanish teacher gave me to deliver to him today....(Senora Mace, if you are reading this...we need a refill, wink wink).  He opened his gifts, which he was uninterested in doing last night.  He read the cards, he played a game, and started a new Lego that his brother gave him, we went on a couple of walks, he answered the phone.....he is just great today.  So for everyone who was worried yesterday, have no fear Dill Pickle is here!!!  He still won't go outside and shoot baskets  (he got a new very cool basketball hoop for the street for his birthday).  His statement to me is this...."Why would I want to go shoot 2 or 3 baskets, miss because my arms feel weak and then be exhausted for the rest of the day?"  Right Dillon, why would you want to do that.  You want to use that hoop when you can really USE it.  So, we patiently wait for that strong athletic boy to get the courage and energy up to get out there and shoot some baskets.  It will come, it will come, it will come; we have only been home for 3 days Shari....it will come (I keep whispering in my ear)!!

D opening birthday gifts

The fashionable Luca