New Central Line and Radiation News

Friday, August 31, 2012

Dill Pickle got his new central line yesterday morning; also known as a Broviac, which is another kind of port with 2 tubes hanging out of his chest.  Dillon, Luca, and I got up at 5 a.m. and were checked into the surgery center by 5:35 a.m.  We were tired but in good spirits.  Dillon did not get anxious until right before the surgery but, when he discovered that at this hospital the parent is allowed to go into the OR and stay there until the child is asleep, he calmed down and was in high spirits.  The staff here are AMAZING....they were so funny, friendly, and personable that many of Dillon's normal fears did not even show up.  They all made him feel welcome, safe, and comfortable.

These two Buckley boys get ornery when they have a lot of unstructured time...and although that can be frustrating as a parent, it is such a joy to see so much love and affection and good-natured fun happening between them.  It is just so "normal."  There was none of the "tiptoe around because my brother is sick" coming from Luca and no "don't bother me because I am sick" coming from Dillon.

Deep discussion on exam table about how to spend credits they earned on a game earlier in the day

A long tedious day of waiting, praying, and then the after effects of the anesthesia and the dose of chemo they placed in Dillon's spinal canal. Overall, it was not as difficult or as scary as I was anticipating.

I am not going over in detail all of the appointments that we are going to....you would get bored and I would run out of space....but we have seen lots of doctors this week and have more to see next week.

Today, Friday, Dillon and I went to Radiation Oncology.  While Dillon played games in the children's room, I sat with 3 doctors and learned all about radiation including why they do it, what it is, how it is given, and the long long list of potential side effects.  There are 3 levels of side effects; immediate, short-term, and long-term.  The only ones I will share at this time are the immediate because those are certain and right around the corner.  So the main ones are nausea, vomiting, diarrhea, and fatigue.  Next came a "low level" CT scan to make a map of Dillon's body so when he goes in for radiation they know just exactly how to place him on the table.  Here is Dillon going through that process.

Going into the CT scan for his mapping for radiation

High Spirits and Silliness all day long

The red lasers help the docs map Big D's body for future radiation. Also you see the new central line (the white tubes)

For the grand finale of excitement today......we were told that because of Dillon's amazing and complete response to the last round of chemo; i.e. being completely cancer free; HE DOES NOT NEED CHEST RADIATION!!!!  This is great amazing news.  The plan was initially that he would get 9 days of direct chest radiation, which has a long list of significant side effects including issues with the lungs, heart, esophagus, and thyroid.  He will still receive the Total Body Irradiation, which is part of getting ready for transplant, but this is at a much much lower level and the risks are then also lower.  So this was great news.  I have worried about that chest radiation for weeks.

The pre-BMT regimen for obliterating his immune system is 3 days of total body radiation twice a day (so 6 doses) and then 5 days of very very aggressive chemotherapy.  The radiation and chemotherapy both have 2 jobs.  The first is to make sure every single cancer cell is really really really gone (even the tiny ones hiding out and playing dead) and then also to kill off Big D's bone marrow/immune system.

As it stands, Dillon's radiation will be on September 18, 19, and 20.....we check into the hospital on September 21 and begin chemotherapy.  About 5 days later he will receive his new bone marrow and begin he long climb back up the mountain.....a mountain with ice storms, man-eating lions, and noxious gasses.....but we will dodge and avoid and manage all of the obstacles and the outcome will be a brand new immune system and a boy who has been CURED of cancer.  My boy....my sweet, innocent baby boy will be back on track with evolving into the amazing man that he was put on this earth to become.

Our new Abode

Wednesday, August 29, 2012

Time again flies right by.

So, the trip up here was uneventful...which is good when you are driving on a highway at high speeds for hours on end.  We arrived Monday at about 4 p.m. and by 6 p.m. we were unloaded, rested, and ready for the community dinner downstairs.  A group of volunteers makes dinner every Monday and families are welcome to go down and eat with the group or have a plate delivered up to the apartment for each family member.....ahhhhh a hot meal that I did not have to plan, prepare, pay for, or clean up after....perfect at the end of a long day.  They served tacos and beans.  Every Wednesday and Thursday there are chefs that come in and meals are again delivered to the apartment.  You don't have to be here...the staff lets them in and they leave the food in the fridge.  NICE!!!  There are movie nights, game nights, craft nights, etc.  Lots of fun for the kids, things to keep us distracted as time passes by.

I know everyone is wondering about the details of the apartment...so I am going to put a bunch of pictures with captions...a virtual tour of sorts (hahahaha).  Darn it, these pictures won't upload in the order I want.  I was trying to take you from the front door, through the apartment, and then to the balcony but I cannot figure it out.  You will see that the only thing missing is the bathroom....really I didn't think you needed to see our throne....hehehe.  Also, you can't see this, but there is TONS of storage in this place, more than we have at home...there is a linen closet, a coat closet, and lots of cabinets and such.  We are on the top floor (it is a 4 story building with 16 apartments) and we have great views of the mountains.

The boys' room with bedding from home...feels like home instead of a hotel

The door of the apartment greeted us as we walked up.

Cute metal work on the balcony railing

Harry Potter themed door decorations

front door looking from the inside

Big old kitchen....lots of cabinets, more than my whole house in Santa Fe

Dining table and TV with stand under for books, games, etc.

Faux leather couch and chair

living room view from the kitchen

master bedroom...my quilt from home

little sitting area outside our door in the hallway

Ignore the apartments and look at the mountains in the distance

Have we shared with you the cleaning standards at the apartment.  It is called the "safe and clean" guidelines.   It is specifically for cancer patients who have a compromised immune system.  We have a many-paged document outlining our duties each day.  They say once we get used to it, it should take about 1-1/2 to 2 hours each day....WOW!!!!!  Let me tell you right now (and my parents will vouch for me on this)...I am NOT the cleanest or neatest person you ever met, so this is a challenge for me.

Dusting, sweeping, mopping, scrubbing toilet and sinks daily.  Washing all bedding including mattress pads and all towels 3 times a week.  Cleaning windows, under fridge, under couch, under stove, dusting lamp shades, dusting window blinds once a week.  That is a sample....it is a massive job.  The boys have been a big help but Dillon and I dread when it is just the two of us....and then I realize it will really just be me because when Dillon's system is down he cannot be cleaning, stirring up dust, wiping up germs.  They give you a pass for when your child is inpatient...so, NO, I do not have to leave the hospital and come clean the apartment during the inpatient phase of the transplant....unless I come to eat, shower, exercise, etc...then I should clean as I can they say.  This is all in the name of lowering risk of infectious illness for the kiddos here.  Is it easy...NO.  Is it fun....NO.  It is completely necessary....YES.  And they encourage us to take these practices home and use them for the first year after transplant....HOLY SMOKES...now that sounds like a full-time job to me. :))  Nothing, of course, in comparison to what our courageous Big D is going to go through...so we grin and bear it, right??  Oh yeah...they do surprise visits to inspect every week to be sure that each family is keeping up with the needed cleaning.  If a family refuses to comply they are asked to leave because it puts everyone else at risk.

One more topic....today was Dillon's first day of appointments.  He got a TON of labs done, which was just a draw from his port (no big deal)...but it was about 20 vials of blood.  We did a TON of paperwork with signing consents for treatment, statements about understanding of risks, optional agreements to allow Dillon's case to be studied for research. On and on and on for almost 2 hours (the boys were about to go nuts sitting through that....thank goodness for the ipad).  The afternoon was spent in cardiology getting all kinds of fancy pants tests  (HI APRIL...I borrowed your line) including a good run on a treadmill.  It was not as long and tedious as we all expected.  There was lots of messing around and playfulness as all 4 of us stayed together through the day.  The promise of Dillon's very last swim was fulfilled and we all swam at my parents' hotel pool for 2 hours before Sean's departure back to Santa Fe (Luca is staying a few extra days and heading back on Sunday with Nana and Grampy).  Tomorrow Dillon gets a new port ( a minor surgery that we have to arrive for at 5:30 a.m tomorrow....you read right...5:30) which will not allow him to be submerged in water for the next many months...so today was a last hurray and he sure enjoyed it.  The good part of the early surgery is that he gets done early and can eat because before surgery you cannot eat or drink anything for many hours beforehand.  He needs this new port placed because it has thicker tubing, which is needed for the bone marrow transplant, and also because it has 2 tubes so he can get more medications simultaneously.  Also, this one is a tube that actually comes out of his body so no more port accessing (that is the needle part that gave Dillon such anxiety in the beginning of this whole ordeal). 

There is so much to tell..I could go on and on....but I am off to bed as we have that crazy early appointment tomorrow.  We will let you know how it goes and maybe even post a picture.  

Packing extravaganza

Saturday, August 24, 2012

What do you pack when you are going to a place for 4 to 6 months and it is hot now and it will be bitter cold and snowy before you know it...and your kid is going to be bored and sick ?  This sort of thought has been intruding into my sleep at night.  The old brain just will not stop trying to plan and figure things out.

We leave in 2 days....well really 1-1/2 days...not that I am counting (yeah right)!

Sean, Dillon, Luca and I will drive up to Denver on Monday and check into our apartment in the early afternoon.  There is an apartment complex 3 block from the hospital that is for families who have children with cancer; some going through transplant, others going through initial treatment. Insurance helps to cover the cost of this.  It is called Brent's Place.  Check it out online at www.brentsplace.org.  You can read about it there.  Here is a picture of the building.



My parents will be driving up on Tuesday to join us.  They will stay at a nearby hotel.

Dillon's first set of appointments are on Wednesday from 9 a.m. to 3 p.m.  He gets multiple tests, labs, evaluations with the bulk being in cardiology that day, but a couple of others too I think.

Sean will fly home on Wednesday evening.

Thursday morning at 5:30 a.m. The Pickle is checking into the hospital for a little operation.....placement of another kind of port into his chest.  It is called a Broviac and you can see a picture of it here.....obviously D's will be minus the chest hair and the necklace...hehehehe...and it will be on the other side of his chest.
 

He will be recovered and out of there by early afternoon.

Friday there are a few more tests: neurology and ophthalmology; but only part of the day.

We are free for the entire long holiday weekend....Saturday, Sunday, and Monday.

Luca and my parents will hang out in Denver with Big D and I until Sunday. Sean needs to get back to Santa Fe to work.

School starts Tuesday for Luca.  He is going back to Waldorf and will be held with love and grace by the entire school community.  THANK YOU SANTA FE WALDORF!!!!!

That is a rough outline of the schedule for the first week.  We will be outpatient and enjoying lots of the free time in Denver with Sean, Luca, and my folks.

You read correctly at the beginning.....Dillon and I will be in Denver a minimum of 4 months and more likely 6 months.  The first 2 months are in the hospital for the transplant and initial recovery and then the last few we will be outpatient in the apartment with daily/weekly appointments at the hospital.  Usually there is an illness or two in there that lands the kid back in the hospital for a few days...especially since it will be cold and flu season.

Sean and Luca will drive or fly up every 2 or 3 weeks for a long weekend.  They will stay in the apartment.....even when D is in isolation there can be some contact with outside family.  

Radiation (which is all outpatient) will start the week of September 4.  He gets that for 2 weeks prior to going inpatient and will then begin the chemo that directly precedes the actual transplant.  As the schedule stands now....and of course it can and probably will change.....Dillon checks into the hospital for the long haul on September 21.  That is a full 3 weeks of outpatient testing and treatments before we enter the hospital for the transplant.  Hopefully, he will feel pretty well during that entire time and we can do some fun stuff and also get started on some school work.

I will keep you as updated as I can.  My brain is on OVERLOAD right now with the preparations of packing and just mentally and emotionally preparing for this departure.

A huge thanks to ALL OF YOU as you have made the first leg of this journey more bearable than it would have been otherwise. I know your prayers and powerful energy and love and support will continue and see us through this next step.

MUCH LOVE FROM THE WHOLE BUCKLEY CLAN!!!!!

Here We Go......ALL CLEAR

Friday, August 24, 2012

The call came in today......

 

Dillon is CLEAR OF ALL CANCER at this moment in time!!!!!  The mass is COMPLETELY GONE and his bone marrow is clear.  Breathtaking.  Even the doctors are a bit shocked. 

SOOOOO...off to Denver we go on Monday.  Sean, Luca, Dillon and I will drive up Monday.  We will get settled in our little apartment, get unpacked, get groceries, etc.  On Wednesday my parents will come up, stay for a day, and then bring Luca and Sean back to home to get ready for the first day of school.

The first thing people ask is..."If the cancer is gone, why does he still need a transplant."  The basic answer is this.....Dillon's cancer is rare and aggressive.  It will almost surely come back at some point without transplant; but with transplant he has the opportunity to actually be CURED and not have the lymphoma return.  As the doctor said to me on the phone.....we have to hit a home run the first time up to bat in a case like this.

I am sure you have a zillion questions.  Please write to me or comment or even call...cuz I am in packing mode and I just don't know what else to talk about right now.  Maybe more will come to me in the next day or so.

Home again and better than ever

Wednesday, August 22, 2012

Dillon completed all of the testing that was needed to evaluate the outcome of his treatment so far.  We don't have any results yet....so we are staying busy and distracted while we wait.  Check out these photos of the boys playing basketball this evening.  FINALLY we are ALL home again.   A completely normal family evening, basketball in the street with this cool overcast evening, a late dinner because no one wants to stop, dirty boys who need a bath, LIFE IS GOOD :)))

The Waiting Game

Tuesday, August 21, 2012

This is day two of multiple tests to evaluate the effectiveness of Dillon's last round of chemo.

Today is the bone marrow biopsy.

The waiting and wondering is just torture.

The clip

Dad, hold still!!!

Sunday, August 19, 2012

Sean decided this morning that his hair was getting TOOOOO long....so Dillon went to work to fix that.

Don't call it moving

A dear friend said something very powerful to me last night.  She said..."Don't say you are moving away....that is not what this is."  We talked about the fact that Denver is just a side trip, an adventure, a little travel and exploration...but NOT moving.

The impact of that statement was profound in my heart.  This whole time I have had it in my head that we are moving....and she is right...we are not.  We are just gonna be gone for a while and then will be right back.  So thank you Cheryl for setting my mind straight.  I feel a relief this morning, a lifting of my heart in this change of mindset.

Another friend encouraged me to stop stressing about the packing. She reminded me that people will be coming to visit, they can bring things that we need....and she said, "Shari, if you forget something you can just go buy it if you really need it....stop worrying so much about every little thing that you pack."  YES....release myself from this anxiety of not having EVERYTHING we need the first moment we get there.  We will make due, we will find substitutes, we will ask that it be mailed...whatever the case may be.  So thank you kindly Ms. Raya for helping me relax into this transition a bit more.  As the saying goes....don't sweat the small stuff.

Big D is doing great.  He has had a couple of visitors.  We have done some fun stuff.  Last night our neighborhood got together and watched a movie in the park, in the dark, outside.  Snacks and drinks and blankets were shared.  It was super fun.  What an amazing group of people we live with in this little neck of the woods.  Thank you Jason for making that happen.  It will be a special memory for all of us for years to come.


Luca is having fun in Montana.  He went fishing in the Yellowstone River with my brother and Dad.  Guess who caught the only fish on the last cast of the day....LUCA BEAR!!!!  He was so proud.  When we Skyped with him yesterday he showed us his fish.  My brother was gonna cook it up for him to eat for dinner.  It was a beautful rainbow trout.  Luca got a lesson in de-heading and gutting the fish so he is anxious to catch another so he can have his hand with the knife. 

HAPPY BIRTHDAY MIEL!!!!  WE LOVE YOU!!!

Dillon and I are headed to Albuquerque bright and early tomorrow morning.  He has several tests and procedures over the next 3 days so we are going to stay in a hotel in Albuquerque to avoid so much driving.  We should have results and a definitive plan by friday. 

White count rebound

Friday, August 17, 2012

Dillon had blood work yesterday at UNM.

His white cells have rebounded back to a normal level so he is "out of the woods" in terms of infections.  He had low platelets (the clotting factor in blood). After we had a nice lunch together, we had to go back to the infusion center for a transfusion.  It was a long day but the outcome was positive. We left in good spirits.

He is doing well at home.  Still not really wanting to socialize or do much in the way of physical activity but he is in good spirits.  Missing his brother more than he expected and looking forward to him returning and having a few days with him before the Denver departure.

Next week: Monday, Tuesday, and Wednesday: Dillon has tests and procedures that will ultimately decide the plans for Denver (if we actually go right now, or if we stay for another round of chemo, or some variation).  As we all know, Dillon likes to present these doctors with a challenge....nothing by the book.

We have a relaxed weekend plan (dinner with a couple of different friends and a movie in the park in our neighborhood, as well as a dad/son date to get breakfast together at Horseman's Haven on Saturday morning). 

I am going to do some work this weekend but mostly I am preparing myself, the house, and the family for our departure.  Emotionally it feels like we are actually just moving away and leaving half of the family behind....not such a pleasant emotion for me right now.  My heart is breaking and my gut is wrenched.

A special thank you for our cousins in New York who made and sent Dillon some very special, very beautiful knit hats.  He loves the colors and they are so soft and comfortable.  They will be very well loved and used while in the cold of Denver this winter.  Thank you for your kindness!!!!

Everything going smoothly

Wednesday, August 15, 2012

Dillon's white count is presently almost 0....so he is very susceptible to infection right now.  He has to wear a mask when he leaves the house and we have to "interview" anyone coming to visit to be sure they are not sick or they have not been around anyone who has been sick in the past couple of weeks.

A shout out to the ladies at the Quilting shop in Santa Fe!!!!!

His energy is still low but otherwise smooth sailing.

Tomorrow is our first trip back to Albuquerque since discharge.  He will be getting blood work and a routine exam.  Basically just checking in.

Next week:
Monday ---  PET/CT scan at 9:30 and audiology at 2:30....that means ALLLLLL DAYYYYY hanging out at UNM.
Tuesday ---  Bone marrow aspirate and biopsy on both sides.
Wednesday ---- GFR (this is some sort of scan of the kidneys which involves injecting dye).

SIGGHHHH.  Lots of driving and lots of waiting.....

The results of all of this will tell us whether we are REALLY ACTUALLY going to Denver on the 27th.

My heart tells me that all of the results will be favorable and we will be off to the next step....but my pesky brain is plaguing the back of my thoughts with worries about unfavorable results.  I am TRYING to stay positive...but sometimes it is just SO VERY HARD!!!

Determination

Monday, August 13, 2012

Dillon is oh so tired these past few days.  As Sean pointed out to us at the dinner table tonight...the difference between being home and being at the hospital is HUGE.  Just the energy in the space.  At the hospital we are often alone for hours, soothing music or just the fan in the background, little conversations, some reading out loud....at home, there are chores, dishes, hustle and bustle, noises, voices, visitors, questions, responsibilities.  Those things alone must be overwhelming to Dillon....not to mention that he just went through another very powerful round of chemotherapy.  One of the doctor's described it as an "atomic bomb."  YIKES!!!!

So, Dillon is tired.  He takes a few walks, he reads, he eats and wanders around the house, he has some conversation. We did a couple errands today and went out for a farewell breakfast with Luca.  In the afternoon he had a friend over for about an hour....and this evening he is COMPLETELY wiped out......it is an "I have to put my head down on the dinner table between bites" kind of wiped out....."I cannot hold my toothbrush long enough to do a decent job cleaning my teeth" kind of wiped out.  HOWEVER, Mr. Pickle is DETERMINED to have some fun, do some things he likes, do some normal things like errands with his mama, have a friend over on occasion, eat some favorite foods.  No matter how tired this child gets....he continues to plow through without rolling over and curling up into a little ball (which is what I imagine I would be wanting to do :))  He has to take 8 meds twice a day....without a blink of the eye and without complaint, he just sits there, somber, focusing, and goes through the little cups and pills one at a time and just gets it done.  I admire him each and every time.

So off to bed early.  We are reading LOTS of Hardy Boys books so we had a couple chapters of that and then to sleep.

Dillon had his first home health nurse visit today also.  It was first thing in the morning so he did not have to fret about it all day.  The nurses came, did some paperwork, accessed his port, took some blood samples, and then de-accessed his port.  We got a call this evening that his counts have FINALLY bottomed out....his white cells are very low so we have to be hyper-vigilant about germs for the next week or so to avoid an infection that could put him back in the hospital.  Restricted diet is in place to limit exposure to bacteria and he has to wear a mask outside the house at all times.  Visitors will be scrutinized for illness and lots of hand sanitizer will be delivered to each pair of hands upon entry.  This drop is supposed to happen...it is "good news"....it just comes later than expected by the docs, as usual.  Our family has come to the conclusion that pretty much everything that Dillon encounters and endures will NOT go as expected....his body is somehow different than the average...be it resistant, or too strong,  or just stubborn as heck.....so expect the unexpected....a little off course is the norm for this boy :))

Hooray!!!!!!!!!!!!!!!!!!!!

  Saturaday, August 11, 2012

 

 !!!!!!!!!!!Dillon is Home!!!!!!!!!!!

The joy and peace running through this family tonight is monumental.

If you lost count....Dillon has been in the hospital for 8-1/2 weeks with only 3 days at home and 2 days in Denver in the middle of that.   

After a long, exciting, anxious, exhausting day....this is all I can write.

Home sweet home!!!!!!!  

Planning Phase

 Thursday, August 9, 2012

Let me start with an apology for being "absent" most of this week.  Sorry Aunt Marilyn !!!! :))) I know most of you worry that my not posting means that crazy bad stuff is happening when, in fact, it is quite the opposite.  Usually when things are sailing right along, just normal day-to-day stuff in the hospital...I forget to post.  It is when there are details and changes and information to share that I think about posting.  My mother reminded me today that people want to know even the mundane daily stuff, just to keep up and get a sense of what is happening.

There has been so much uncertainty (i.e..they tell us one thing one day and then the next it is something else) about what the next step is in the process of getting to Denver. I have not posted because I did not want to confuse everyone.  As of now....still lots of confusion but we are slated to go to Denver the last week of August. The exact day depends on the results of Dillon's CT scan and bone marrow biopsy that are coming up on August 22 to see how "effective" this last round of chemo has been in obliterating the chest mass and keeping his bone marrow cancer-free.

In the meantime....Dillon is doing great.  Healthy appetite and happy outlook.  Today, for instance, Dillon, Nana, and Luca were in Child Life (a play room for all the kids in the hospital) doing crafts.  Dillon will tell you emphatically that he is not a crafty kind of guy....well low and behold the past few days he has been all about crafts.  It is so funny and charming to watch this change.  It is just like when the kids are little and they swear they love a certain food and then one day won't touch it.  Dillon and I have painted, done a paper mache project, and today's project cannot be divulged  because it involves a gift for someone and I cannot give that away :)) Dillon also met the resident therapy dog this week.

Bug the therapy dog at the hospital.

My dad made (per Dillon's very specific and emphatic request) a batch of Sloppy Joes and brought them down yesterday to have for lunch with Dillon. Grampy will do anything to please this boy right now :))

Last night Sean came for a visit because it was our 14th anniversary.  We decided to get Chinese takeout as a celebratory meal.  Dillon helped pick the dishes we ordered and off I went to get the food while D and Sean hung out a little.  I served up the plates and Mr. Pickle took a look, a sniff, and one bite of that plate of food and was done for the night.  Sean and I had to eat quickly and clean up because the smell was intolerable for Dillon. He got very nauseous, which lead him to want to get in bed and curl up under the blankets.  Sean rubbed his back for a few minutes and he was out for the night. 

Luca has been here 3 times this week and will come again on Sunday.

It is like the clowns in the VW at the circus...how much Luca fits in this tiny car??

Nana, Grampy ,and Luca are heading up to Montana on Monday for the long awaited road trip. They are going to celebrate Miel's 6th birthday (that is my niece, my brother Todd's little girl).  This trip was planned in January and Dillon and Luca were going to be gone for about 3 weeks.  The trip has been trimmed down to 10 days since Big D is not going and Luca will miss him and struggles emotionally a bit when they are apart for too long.  Dillon is terribly disappointed that he cannot go.  Miel called the other night and was so wishful that we could all come...."Aunt Shari...I wish EVERYONE was coming to my birthday."  "I know honey, I do too!!!!!" 

Dillon and I have been watching all kinds of Olympic events and marveling at the athletes in these sports that we have hardly even heard of.  Today we saw some horses prancing around....that is an Olympic sport...since when????  And women's BMX racing....GOOOOOOO GIRLS!!!!!!!

The events of last weekend seem like eons ago and with our fingers, toes, legs, arms, and eyes all crossed....we MIGHT be discharged this weekend......If I get my way we will leave first thing saturday morning but, since expediency is not something well known in the medical world, I am not holding my breath.

IF we get to go home it looks like we will be able to be home all the way until August 22...the day Big D is scheduled for his PET/CT and bone marrow biopsy.  

I will let you know what the schedule might look like as the time get closer.....EVERYTHING is dependent on the results of the above tests (if and when we leave for Denver, when and what the first set of treatments will be once we get there...etc etc.).  The long list of variables and unknowns is overwhelming as usual and I am learning to just hold tight to the present moment. 

Oh yeah...have you seen the photos of the street or business signs with names in our family on older posts....well, here is another one.

Copper is our beloved cat!!

Back to Baseline

Monday, August 6, 2012

Dill Pickle is back!!  Ornery, sassy, hungry, smiling, talking, moving around, playing PS2 with Luca.
Other than the occasional wave of nausea and being unsteady on his feet, all is well.

I am currently waiting for the docs to come in and give us some sort of schedule for our release from UNM and transfer to Denver.. ...

After a year of waiting....

Sunday, August 5, 2012

Here is Luca with his early 8-year-old birthday present from Mom and Dad.  For the past year Luca has constantly and consistently asked for a cello.  We told him if he still wanted to play cello by the time he was 8 we would get him one.......

Here he is, getting ready to practice.  He has not had a single lesson yet but will sit and play for half an hour at a time.  He is over the moon happy and super enthusiastic.  He cannot wait until his lessons start in September.

Today Luca brought his cello to Dillon's hospital room and played for him.  I don't know who was more proud....D or L :))

Special thank you to The Violin Shop of Santa Fe and our very sweet and dear friends Kevin, Julia, and Finn for helping make this happen for Luca.  This is a life-changing moment that he will never forget!!!

Stablized

Sunday, August 5, 2012

Dillon had an incredibly long day yesterday and through the first part of the night.  He finally fell asleep after hours of agitation and I retreated to a close by hotel room to cry, scream, and sleep; Sean was on duty all night long. I just could not be there any more...I had to leave. It broke my heart to walk away from that room with my boy sleeping...not knowing if this would be the last time I saw him alive...but I had to leave...I was breaking down.

In the morning Big D was "back to normal."  Talking, smiling, wanting to get into dad's bed to snuggle, but still very nauseous.

In swoops mama......eat a cracker, 2 ice chips, deep breathing, and distraction with ipad games.....he forgot about the nausea until the next significant wave hits.....repeat cracker, ice chips, breathing, distraction....another 30 minutes pass in relative comfort.

It is miraculous.  These doctors saved my boy's life yesterday. The treatments that they gave him overnight finally worked. His labs are normalizing enough that he is stable and safe. A beautiful thing....Dillon does not remember ANYTHING from yesterday.

At about noon they announced that Dillon had stabilized enough to move back up to the 6th floor into a room that we have actually been in before....our favorite one so far.  Who knew that we would be celebrating a hospital room as if it were a reward, an adventure, a treat.  We were so relieved to be able to go down to the car, haul all the stuff back up (Sean did that, of course), and get ourselves back situated.  Dillon's response...."This room is so much more comfortable."  In fact this morning in the ICU he asked when he could go home.  The doctors looked at him funny like....you are not going home for a good long while little buddy....and when D saw their expressions of confusion he reiterated that he really meant when can we go back upstairs to the special care unit.  Upon entry....Mr. Pickle got a STANDING OVATION....clapping, whistling, tears, hugs....from the staff on the unit.  It was very sweet and the energy was amazing. 

SOOOOO, he is out of the woods.  The dangerous, crazy, scary stuff of yesterday is over.  Dillon is still severely ill both with nausea and some wacky things in this blood levels, but they should normalize with time.  It looks like the power of prayer, love, amazing medicine, and the miracle of the human body wanting to correct itself has prevailed once again.  THANK THE HEAVENS!!!!  We had a terrible scare about 24 hours ago and we are all breathing a bit easier this evening....exhausted....but breathing. 

I cannot tell you the path we take from here, as I am not sure.  The doctors all meet every monday morning and tomorrow is one of their bimonthly teleconferences with the Denver team...so they are going to hammer out the details of the game plan for the next days/weeks in Dillon's case

A special shout out to the GUNDRY FAMILY!!!!!  The generosity and love that flows from each of you is felt widely and deeply by each of us!!!!  Dillon wants to know if you are going to use that lamb at the restaurant and if so...will you save him some. 

I went home this afternoon with Luca.  On Saturday afternoon we left in a rush so we had to come back home to get the stuff we had not packed up.  I head back into the hospital tomorrow...I hand Luca off to Nana and Grampy, Sean goes to work, and I wait for the plan from the Oncology Team.

Our utmost gratitude for all of the loving power we felt flowing our way last night!!!  You will never know how much that helps us both physical, spiritually, and emotionally.

In ICU...this may be it

 Saturday, August 4, 2012

I cannot begin to explain the sheer terror that we are feeling right now.  Overnight Big D went downhill....severely.  We don't know if we are going to lose him.  He vomited nonstop for hours, his sodium dropped to dangerous levels, his magnesium and ammonia are high...the result.....transfer to ICU immediately. He has to get stabilized to figure out what is causing all of the problems.   He is agitated, delirious, cannot speak clear words, cannot answer questions about pain or discomfort, cannot focus his eyes, pupils are not responding.He looks right past whoever is talking to him. We are right in his face, telling him we love him, telling him we are here...he doesn't hear, he doesn't respond, he is just screaming, screaming, screaming a gluttural, primitive, heart-wrenching scream . The entire ICU can hear him and all of the doctors on the floor avert their eyes when we walk by.  They are allowing the entire family to be in the room....they don't know if he is going to make it.  We did send Luca out...it is to scary....a family friend who lives in Albuquerque stopped by the hospital and grabbed him up.

Basically Dillon has neurotoxicity....toxins built up in his nervous system from the treatments, his tumors breaking down, the medications used to calm side effects of other medications.  They are not sure why this is happening and thus they cannot fix it just yet.   Lots of tests, lots of teams of doctors from all sorts of specialties trying to piece this together and get Dillon stable.   I know everyone is praying for Dillon regularly.....BUT IF YOU COULD PRAY EXTRA THE NEXT FEW DAYS THAT WOULD BE A GREAT BLESSING FOR ALL OF US.

And a special note to our dear sweet friend Faith.   You are just the most extraordinary young lady.  Our family is just amazed by your kindness, dedication and generosity.  You are one of the strongest supporters we have and I wanted to thank you for that Faith.!!!

Midweek

Wednesday, August 1, 2012

Today Dillon was quite energetic and not nauseous at all....until bedtime.  We went on a couple of walks, he watched Olympics, we read, he listened to some music, he talked on the phone.  He hardly did anything over the weekend so his energy is better and his nausea has improved.

Dillon and Luca both got acupuncture yesterday afternoon.  We are waiting for the 24-hour post acupuncture mark to pass see what the blood counts are.  This morning there was no change, they are still high, but that was less than a full day after the session.  Also, the chemo makes Dillon's skin very sensitive so he could not tolerate as many needles and he could not keep the ones he did receive in for very long.....so our "results" may not be as impressive as in the past.  However, as above, his energy and nausea improved significantly....so YEAH MELISSA!!!!!

Off to bed at almost midnight after a long evening of trying to control the nausea that did creep in this evening.