Day 71.....and day 14590

Wednesday, November 28, 2012

My day 14,590......My 40th Birthday.  I was surprised by an abundance of emails and texts and phone calls from family and friends.  Thank you everyone for that....it was special and fun!!!  My sweet husband had a birthday cake delivered to the apartment.  The kids were in on it and I had NO idea....they are so sneaky.  We had a lovely dinner of sushi takeout from Whole Foods and a movie in our snug little apartment.  Another surprise came when we looked out the window and every tree surrounding Brent's place was ablaze with a multitude of colorful Christmas lights.  A crew of guys worked on it all day long and it is spectacular.  I had a lovely day.  I was so at peace and had such joy in my heart to have my boys with me all day.  They were sweet and loving (as usual).  I am feeling good.  I feel stable.  I am drinking my smoothies, Luca and I are exercising a bit.  My life feels sorta "normal" right now....waking up to whispering kids in the other room, everyone wanting something different for meals and having to negotiate, the laughing, the bickering, the chaos (making dinner, one kid in the shower, one doing something else and both needing help at the same time, and the phone ringing all at the same time)....that normal mother stuff feels SOOOOO good!!!  I have had some time to read since Luca got here because he keeps Dillon busy.  The boys are also engaged in helping me with the cleaning....we each have specific job assignments.  We are also doing some schooling stuff.  Luca is working hard on his reading.  Dillon is reading and doing cross word puzzles for vocabulary and spelling work.  This afternoon we are going to work on spelling, grammar, and penmanship in the form of thank you notes and letters to friends.  All of this makes me feel like my old self, like my family is indeed intact and moving along just as we would be if we were at home.  It is such a relief to my heart and the best gift I could have received for my day of birth :)))

Sean sent a chocolate cake with Cherry filling....yummmmmmm!!!!!

We had a big day yesterday in the clinic.  You remember Dillon had a PET/CT.  The outcome of that was SPECTACULAR, as expected.  It was completely clear....no evidence of cancer or other questionable activity.  So, ....our boy is CLEAR and HEALTHY.

The little bump (you know we just had to have something to keep it interesting...wink wink).   His blood work from Monday showed a huge amount of a virus called cytomegalovirus.  It is another one of those viruses that most of us have in our systems and with the steroids for the GVH (which lowers his immune system function) this has reared its ugly head.  He began treatment immediately, which is a very powerful antiviral.  They infused the first does yesterday in clinic after his PET/CT scan and they were able to order it for us to do at home twice a day for a couple of weeks.  They caught it early and the treatment began right away, so hopefully it will be controlled.  When this virus is not controlled it can lodge in the lungs, cause serious pneumonia and lung collapse and, worse case scenario is that it can be fatal. It is very serious, we are watching Dillon's symptoms very very closely, but hopefully jumping on the treatment early will avoid all of those complications. Only time shall tell.

I wanted to share a really cute picture of Dillon....not only does he look happy but you can see the little fuzzy hair that is coming in on his head.  His hair gets "longer" or more dense every single day.  Seriously...he gets up in the morning looking different every day.   His lashes and brows have fully re-grown so his face looks more like himself.  The other thing that is finally growing are his fingernails.  They were so severely damaged from the chemo that they may fall off but the part up next to his cuticle is growing in healthy.

Look at all that hair...and the brows and lashes are so full and dark!

can you see that white ridge up by the top part of the nail? That is were the old nail may fall off.

This ridge is very pronounced...can you see it about 1/3 of the way down from the cuticle?

 I gotta go wrangle these boys into the shower before we head out for a movie this morning.  Did you know that if you go to a movie at 11 a.m. on a tuesday or thursday you are likely to be one of only a handful of people in the theater???

Nana and Grampy arrive today for the weekend.  They are so SUPER excited to see the new and improved Dillon without the nausea and vomiting and with the ability to eat, laugh, walk.....we will enjoy some holiday activities and some lovely meals together.

Day 68....more changes

Monday, November 26, 2012

Today Dillon's clinic appointment went very well.  They have decided they are not going to worry about the rash....i.e. no biopsy needed (Dillon was so super happy to hear that).  They don't think it is GVH and unless it develops into something more than it currently is, they are happy with us just scrubbing and moisturizing to keep the dead flaky skin at bay.  His counts were FANTASTIC!!  He was scheduled to have an infusion of a super strong antibiotic today (it happens once every 2-1/2 weeks) but his white blood cell count, hemoglobin, and platelets are so good that they have discontinued that and put him on a much more mild (read as...fewer side effects) antibiotic that he only has to take 3 days a week.  Dillon's blood pressure continues to creep up and stay up so they had to start him on a very low dose of an antihypertensive medication.  If you recall, the blood pressure increase is directly related to the IV steroids so as those get tapered over the next 6 to 8 weeks so will this blood pressure medication.

The biggest news today......

NO MORE TPN!!!!!!  The grin on my boys' faces, when the doctor praised his efforts at eating and drinking and then made the announcement that the TPN was to be stopped immediately, and the breathless "YES" that his brother uttered with the classic fist pump was PRICELESS.

Ahhhh the joys of having the support and love and encouragement of Mr. Luca Bear.  Dillon is truly a different kid with him around.  He is...if I can be so bold as to say....more normal, more himself, more a kid.  Luca would stay forever if we let him....hummmm, I wonder how Sean would feel about that....hehehehe. 

Messing around with the super fun game that Thane sent.

We are planning to go see some holiday lights and do some other fun stuff this week.  Nana and Grampy will arrive on Friday for the weekend.  Sean is back in Santa Fe with his nose to the grindstone for the week without Luca....hopefully he remembers to have a little fun and to sleep :))  Everybody here in Denver is still healthy, so I think we avoided disaster this time with the illness that Sean brought with him...whewwww...now we have to tackle cold and flu season.

Everyone stay healthy, stay connected, and pray for SNOW!!!!

Day 66....Smooth sailing

Saturday, November 24, 2012

It is like a new life here at Brent's Place.  Dillon is eating, playing, laughing, taking all of his meds without much trouble....not vomiting, not napping, not having nausea.  Yesterday we went to GameStop to trade in a couple of games that he does not like for his DS that the hospital gave him.....then we went into target and he tried on several pairs of pants because he currently only has 2 pairs that fit.  This is such a huge deal....even at his best Dillon truly dislikes trying on clothes of any sort, even things that he loves and desperately wants to own.  The past 2 nights I have chosen not to hook up his TPN because he has eaten several times throughout the day, including regular meals with the family and even a bowl of popcorn last night during a movie.  An absolute Dillon classic favorite is Caesar salad with homemade dressing (a modified version without the egg yokes, as he is not allowed to eat raw things)...this dressing is super garlicy, has plenty of anchovy, and is creamy.  He has had that 2 days in a row.  He takes a Tums beforehand to offset the possible garlic heartburn-type symptoms.

Sean has been well...better than well.  All the extra sleep at his parents' home has done wonders for his energy....he is having a great time here with all of us.

We might go to another movie today.   Cousin Miel told us that Wreck It Ralph is a great movie so we might go do that. 

Today's big announcement......Luca is going to stay with Dillon and I for this entire week.  He has begged and begged for a 2-week stay.....his main agenda is that he wants to be with me for my birthday, which is Wednesday.  So Sean is heading home tomorrow and I get to keep my 2 little chickens.  Denver has tons of holiday lights and activities and I thought we could do a few of these now (early in December) before they get too busy and crowded and unsafe for Mr. Pickle.  We are all looking forward to the fun.

Dillon has lab work Monday and a clinic appointment.  They will check all of his levels and re-inspect his rash (which is the same as before, no change at all...which is good right...it is not worse).  On Wednesday he has his PET/CT scan...which he HATES because they have to access his port (you all remember the needle trauma at UNM so long ago).  It will be great to have Luca here to distract him and keep him company.  The reasoning behind the PET/CT is essentially a final check to make sure that there is no cancer activity anywhere in Dillon's body.  No one thinks there is and no one expects to find anything but after his crazy start to this whole journey they just want to be triple sure that he is all clear.

Hey...a special shout out to THANE.....we got your package...AWESOME and we will be playing both of the games  today.   Thane, you are such a special friend and we miss you terribly!!!!  We look forward to playing some basketball with you buddy!!!!

Day 64....Happy Thanksgiving

HAPPY THANKSGIVING!!!!

of all the years in my life this one is the one that I have the utmost thanks for everything in my life.  My boy is healing, my family is intact and connected and supporting each other....and then there is all of you out there sending light and prayers and energy and angles and good wishes and all the powerful feelings that come with supporting us...so THANK YOU THANK YOU THANK YOU !!!!  We truly feel the most blessed this year.  We cannot say enough to all of you supporters.  You have been an integral part in helping us get through this journey and we will be forever grateful to each and every one of you!!!

Thursday, November 22, 2012

Sean is back in Denver today.  Our sweet little family gets a long weekend together.....sigh....we all need that so much for ourselves individually and as a cohesive unit.

Yesterday Dillon had a quick clinic appointment (which was not scheduled but they asked us to come in) because he developed a full body rash.  The outcome of the visit was a list of reasons why the rash could be happening:  It could just be sensitive skin. It could be GVH of the skin, which is concerning because he is already on treatment for the gut GVH and if it the skin is breakthrough then it could be a very strong case. It could be an allergy to a new med he started on the day he was discharged. It could be the beginning of a viral infection with a cold or flu being the most likely (apparently in some immunocompromised people the first sign of trouble can start with a skin rash).  SOOOOOO we have a plan...basically it is a process of elimination.  Take care of the skin with moisture to help the sensitivities, stop the new med and switch it a different one, watch the rash carefully and if it gets worse start a steroid cream on the skin which could lead to a biopsy for confirmation of GVH, and last but not least is watch for other symptoms that might be signs of a cold or flu (the treatment of which is still unclear to me...do we manage at home or is it an automatic readmission to the hospital).

Dillon had been to the Bass Pro Shop before his transplant and he just loved it.  It is like a museum.  There are stuffed animals and exhibits and games and all sorts of fun things at this store.  Yesterday afternoon he said he wanted to do something fun with Luca....so off to Bass Pro we went.  Dillon gave Luca a tour of the store.  They "rode" ATVs, they climbed in speed boats, they rode the clear elevator that goes through the middle of a fish pond, and the grand finale was the shooting gallery.  Dillon was up and on his feet for about 1-1/2 hours in all....it was amazing and fun....and he was completely wiped out by the end.   This morning his legs are sore from all that extra activity yesterday :)))

Dillon shot a mountain lion, an owl, a rat, a raven, and turtle...plus a bunch of other stuff.

62 continued....what a difference a day makes

Tuesday, November 20, 2012

Just about 24 hours ago my boy was riding in a wheelchair out of the hospital....

Today......breakfast with the family.  He got up and said, "Whatever you guys are having for breakfast, I want some."  It was so super funny because Dillon can be quite precise in what he likes for breakfast....not picky, just clear in what taste he is in the mood for.  At this point his mind and body just cannot think for themselves about food, so he was willing to just take whatever was being served, which was eggs and banana bread and blackberries.  He sat at the table, ate, smiled, talked, laughed, enjoyed.....

It blows my mind right now, having him behave so normally.  I catch myself hovering, asking for the zillionth time if he is okay...he rolls his eyes and gives the old, "Yes mom. I am fine. STOP asking" with a shake of his head.

This will blow your minds....We went to the movies this morning at 11:40!!!!!!  With disinfecting wipes, mask, and blanket to cover the seat....off we went.  Dillon was super excited because we had seen the advertisement for the movie Hotel Transylvania for weeks while we were in the hospital.  Apparently this is the last week of this movie in theaters before it goes to DVD, so we were really happy to get to see it on the big screen.  They popped fresh popcorn for Dillon (he cannot eat things that have been sitting around for any period of time because bacteria can grow).  There were 4 other people in the theater!!!  Dillon had quite a bit of popcorn and half a box of Milk Duds.  His stomach was fine by the end of it but his body was getting tired.  It took his last bit of strength to get back to the car and then up to the apartment.  The boys are both currently snoozing (I have been informed by my ever so wise kiddos that nap is for little kids but snooze is still an acceptable term for big kids).  Nana went to the fabric store to check out the fabric selection in the big city, and me...I am writing this blog and then I will lie on the couch and read.  Oh yeah...I took a really nice walk this morning in the cool autumn air....It was fantastic!!!!!

Day 62.....lets try this again

Cruising to the apartment

Tuesday, November 20, 2012

Wheewww....we made it.

Dillon was discharged yesterday afternoon at about 1:30 p.m.  His brother pushed his wheelchair and I pulled the wagon of belongings.  He was in high spirits and energetic.  We got to the apartment and he declared that he would walk from the car to the apartment without the use of the wheelchair.  He got out of the car and moseyed right along.  Once in the apartment he walked around, put his jacket away, and settled onto the couch.  After eating a little grapefruit and a few bites of pizza it was nap time for he and Luca.  We had 2 very late nights in a row and they are both lacking several hours of sleep.  Both boys slept for 2 hours while I went to the store to get groceries for our very naked fridge.  No, they were not alone....my mom is here :)

The next big event of the day was......Brent's had their community Thanksgiving dinner last night.  About 15 minutes before it started I asked Dillon if he wanted to come downstairs with us to get a little food.  He said, "Sure, I want to do that."  So off we all went.  He walked down to the dinner, played ping pong with Luca for about 15 minutes, and then got a few bites of different foods on his plate.  Everyone at Brent's was super excited to see him (they have not seen him in 2 months) and the extra attention was a bit overwhelming.  Dillon ate some stuffing, turkey, and cranberries.  Then, very discretely, he gave me the signal that he was "done".  I swept him away without a big fuss back up to the apartment.  Nana and Luca hung out downstairs a while longer and then joined Dillon and I in the living room from a little TV time on the couch.

Dillon was able to take all 14 of his meds last night.  He did get a bit woozy but they stayed down.  Off to bed at 9:30 with TPN running overnight.

Sean is still in Pagosa with this parents.  He is trying to figure out if he can just come back up to Denver in a couple of days and have the weekend with us or if he needs to go back to Santa Fe to work.  He is feeling much better and Dillon's doctors gave him the okay to return after 48 hours without symptoms or fever.

Luca is happy to be here.  He misses us so much when he is in Santa Fe.  He is relaxed and happy to be in the arms of his big brother and mama.  He gave Dillon so many hugs when he first got here.....he is such a snugly lovey boy.

Nana will be here for the whole week or until Sean comes back.

Dillon does not have to return to the clinic until Monday so we have the whole week and weekend to ourselves.  Our goal is to get outside and get some fresh air and move our bodies.  Mr. Pickle is a much different kid than last time he was out of the hospital.  He is engaged, he has energy, he has motivation and interest in things, he has a small appetite with minimal nausea and nonexistent vomiting, he has more strength and mobility....this is a whole new chapter for us....getting our Dillon back this time.  We are all looking forward to some fun and relaxation.

Day 60....if its isn't one thing it's another....

Sunday, November 18, 2012

This is NUTS!!!!!

Sean and Luca arrived at 2:30 yesterday afternoon.  We all hung out for a couple of hours in the hospital room.  Then Luca and I left to grab an early dinner so we would have plenty of time to relax and read together before bed.   As we walked in the apartment door at about 6:30, Sean called saying he was not feeling very well....he was very tired, kinda dizzy, a little nauseous.  I told him I would come switch places with him so he did not spread whatever he was dealing with to Dillon.  Luca and I read for a few minutes and then I got a call from the head nurse on Dillon's unit...."we are taking Mr. Buckley to the ER...he is about to pass out, his extremities are tingling, and he is extremely nauseous!"   My mind began racing..."what could this be, is it serious, is it being spread to Dillon as we speak, are either of them in danger...."

By the time Luca and I got to Dillon's room Sean was already in the ER and the cleaning crew was in the room doing an immediate deep sanitizing.

At 11 p.m. Sean was discharged from the ER after having received IV fluids and Zofran (an anti nausea med...same one Dillon takes every 8 hours).  He did not have a fever so we figured it was from something he ate, combined with the extra stress he endured at work last week.  He was feeling much better and drove himself to the apartment.  The head nurse allowed Luca to sleep over at the hospital with Dillon and I, which is usually against policy.  (Luca was so excited to finally get to stay in the hospital...one of his secret wishes early on in the journey was that he was 18 so he could stay with Dillon in the hospital).

This morning Sean woke feeling very feverish, weak, nauseated, exhausted.  He has stayed at the apartment sleeping all day and the boys and I are in the hospital room. Our hope is to keep Sean's germs contained. At this moment, Sean has quite a fever of 101and is likely extremely contagious.

Parents/Grandparents to the rescue........Sean's folks are on their way to pick up Sean and take him to their home in Pagosa Springs (5 hours away) and take his car too..so that when he is better he can drive back home.  His mom did not want him to be alone for days on end with the flu....someone needs to make sure he is staying hydrated and who better to do that than one's own mother!  My mom is on her way from Santa Fe to help with Luca and Dillon and me :)))

The rule as I understand it is that anyone who is sick cannot be around a BMT patient for a week after an illness to assure that all contagious germs are gone.   Sean will have to return to visit on a different weekend.

This is a huge disappointment for all of us.....but it is the necessary sort of isolation that has to happen in order to keep Dillon safe...and me as well.  We are watching Luca very closely and if he begins to show any symptoms then someone will come and "evacuate" him as well.

Keep the prayers coming....we still have quite a storm to weather.  Your love and energy are powerful forces in our lives every single day.....thank you!!!!!!!

Day 57....let the eating begin!!!

Thursday, November 15, 2012

Yesterday Dillon ate twice (cream of wheat in the morning and half of a bagel in the evening, as well as 2 mugs of steamed caramel milk).

This morning upon waking Dillon asked me to order him another bagel.  He ate the whole thing with a mug of steamed caramel milk and a bucket full of pills on the side.  His stomach still acts "strange" when food first goes in....and he has to relax and focus on breathing in order to keep the food down, but if he can hang on for about 20 minutes then it settles and his belly gets busy with digesting, which is a task that his gut is having to "re-learn".  

Dillon's energy is increasing.  He is talking more, doing more for himself, interacting more, joking around with the nurses and doctors.

Sean's folks were here for 3 days and Big D enjoyed their visit.  The extra time off and cleaning help was a great support.  Thank you Pat and Marylin!!!!

My dad is going to head back home tomorrow morning (he has been here for 12 days, his longest stay).  He was here for the increased nausea and vomiting, the readmission, the scope with biopsies, the diagnosis of GVH, and now the response to the treatment.  Riding the waves, the ups the downs as a family, has been the biggest blessing for Dillon and I.  Nana has been holding down the fort with Luca and Sean in Santa Fe, which keeps our family intact and functioning on that end.  Thank you Mom and Dad!!!!!!

We continue to get good news this week. The rest of the biopsy results from Dillon's endoscopy are ALL NEGATIVE.  The only thing they found in his entire GI tract is the mild GVH, which is responding beautifully to the steroids. The blood cultures, nasal wash, stool, and urine continue to be negative for EVERYTHING.  His blood counts are beautiful and strong.  He has not needed platelets and he only got red blood cells at the beginning of this current admission as a precautionary treatment.  His liver functions and kidney functions are all within normal limits.  Today his ANC is 4900.  His bilirubin is back down to normal.  Everything is just falling into place.

The plan, at this moment, is that Dillon will be discharged on Monday, November 19, and we will be back in the apartment.  Sean and Luca are arriving Saturday afternoon, November 17, so Sean will get a couple of nights in the hospital with Dillon and then he will get to be here for the transition back "home".   I have been trained to do Dillon's blood draws so we can do those at home and either Sean or I can just run them over to the clinic....so essentially we won't have to go into the clinic all of next week (unless some of the labs are abnormal, which no one expects to happen because he is so stable).

The last time we were discharged I was nervous and unsure.  I wanted more than anything to get the heck out of the hospital but I was worried.  There was so much to learn and handle, all the IV stuff and the fact that Dillon was still so weak that it was difficult for him to get to the bathroom.  It was just pretty intimidating.  This time....we are both ready and excited. I feel like I am getting my boy back this time!!!

Day 54....

Monday, November 12, 2012

I just realized that on the last post I was in my usual time warp...it was a snowy Saturday not Sunday.

Dillon is getting better each day.  His nausea is at a more controlled level....certainly not gone but it is not consuming his full attention and energy every moment of the day.  He did eat a few bites of watermelon yesterday, which he vomited about an hour later and then 2 more times after that....I guess the old belly decided it wanted to be VERY empty yet again.  He tries so hard to meet the expectations of eating and often it is stressful for him.  This is yet another Catch 22 situation. He gets angry with me when I ask him throughout the day if he wants something to eat.  I have a small arsenal of his favorite foods to draw on at any moment.....to no avail.  I conveyed the story to him about his birth and how from the very first breath he took my main job in this world was to feed him.  He listened, rolled his eyes, declared that he does his best.  "Yes my strong one....you do your very best, better than anyone would ever expect.....but as your mommy I just cannot stop trying to feed you."  I wonder if I should just stop trying, or asking, so that his perception of pressure from me is removed and thus his stress level around the food issue reduced.  Surely a growing adolescent boy will eventually regain the intense desire to eat....constantly....right????

We had another fantastic night of sleep last night.

The doctors think that the steroids are beginning to work on the gut GVH.  He began the one that he has to take by mouth today.  Of course.....the side effects.....Good Lord do we always have to trade one solution for another outcropping of symptoms?   This time it is VERY high blood pressure.  High enough that they are having to treat it.  So they take his blood pressure about a million times every day and when he has 3 highs in a row then in comes.....you guessed it.....ANOTHER MED.  This is a strong antihypertensive that he puts under his tongue, tastes bad enough to induce immediate vomiting, and works on the blood pressure in just minutes.  Holy moly does this cycle ever cease?

Sean's folks are arriving today for their first visit and Dillon is looking forward to that.  The depth of this boy's support network continues to grow.

Day 52...snowy Sunday

Saturday, November 10, 2012

The roller coaster ride continues......weeeeeeeeee!!!!!!

First of all, Dillon has had about 18 hours without vomiting.  YEAH!!!!!  We had a fantastic night with lots of sleep.  We went to bed at 10 p.m, woke once in the night for a bathroom visit, and got up at 8 a.m.  I am a new person with all that rest.  The past couple of days had wiped me out and I am rejuvenated with the sleep.  Also, my dad is with Dillon most of the day today so I have several hours to myself at the apartment to add to my rejuvenation. 

Big D had his upper and lower endoscopies yesterday.  It went without a hitch and he recovered nicely by sleeping all afternoon.

The first set of results are in from the biopsies that were taken.  Dillon's gut, in fact, has mild or early GVH.  I talked about what that is in the last post.  This is actually good news.  First of all, it is good that it is not severe GVH.  Secondly, it is good that we found out now and not weeks from now when it undoubtedly would have been worse and he would have been that much more ill.  Last week the doctor had said he would wait several more weeks before doing the endoscopy if he continued to be nauseous.....but Dillon had the increase in vomiting this week on Tuesday, which landed him back in the hospital, which spurred an immediate order for the endoscopy.  So, as always......everything happens for a reason.  We caught this early because of the flare in vomiting that my dad and I recognized as being vastly different from previous. I insisted that I wanted him admitted for further evaluation.  There is always a reason....there are no coincidences.  Thirdly, they say "a little GVH" is good....it is a great indicator that the new immune system is very strong, beginning to function well, and if there is even 1 stray cancer cell it will get obliterated by the new cells that are in overdrive in his gut.  The research shows that patients who get some level of GVH have a better outcome in the long-run.

The mild GVH is treated with 2 forms of steroids.  One will be a systemic steroid (right now it will be IV but it will eventually be a pill taken orally).  The second one is only oral and it is a sort of pill that only treats the stomach so the amount of steroid actually running through his entire system can be minimized by using this combination.  He won't be starting that one until next week some time when his stomach (hopefully) is feeling better and can tolerate the oral meds again.  This will hopefully "cure" this level of GVH. There are some that cannot be "cured" and end up being a long-term (even life-long) problem. 

The other thing that the pathologists saw on this first set of slides was fairly significant inflammation.  We don't know what is causing the inflammation, as the second set of tests and results will not be available until the middle of next week. The suspicion and most likely culprit is some sort of infection in his stomach....but we need to find out what the organism is before it can be effectively treated.

So, the long and the short of it is......there is a reason for this prolonged nausea and vomiting.  For me this is good news.  It is much easier for me to accept an actual diagnosis and subsequent plan of treatment, than it would be to accept the old.....we are not sure, lets wait and see, or try this and try that and then wait and see.  The bad news is that we will probably be in the hospital longer than we had hoped....but with any luck when we do get out again he will be in much better health and will truly enjoy his "freedom" next time around.

Day 51 ....another bump

Friday, November 9, 2012

Dillon had a period of no nausea yesterday and a small appetite......followed by uncontrollable, persistent,violent wrenching all night long.  The way it is coming about now indicates a complication of some sort.....this is not your garden variety post chemo, post radiation, post BMT stomach issue.

He was evaluated by the GI docs this morning after vomiting 5 times in 2 hours this morning and  12 times overnight from midnight until 6.   They are going to do a battery of tests including a scan of his pancreas, a barium swallow x-ray, and upper and lower endoscopies with biopsies.

The main suspect is graft versus host disease, which is a common complication in BMT patients, though it presents itself in different parts of the body in different people.  GVH is complex, but in a nutshell this form is the new immune system attacking his gut as it perceives it as foreign material.....sorta the opposite of when you hear of organ transplant rejection where the persons body attacks the new organ.  They say it is actually good to have "a little" GVH" because the new cells will also attack any stray lymphoma cells, if there are any, and it is a sign of a full takeover by the new cells, which is what we want.    The research shows that people who get some degree of GVH actually have a better long term outcome.  It is treatable/manageable if caught early, and this would be considered early...so that is good.  Treatment is......more meds of course .....just what a sick belly needs, right?

They diagnose GVH of the gut via biopsy.  So a tube with a camera will go down Dillon's throat and they will look all around his esophagus, stomach, and upper intestine.  They will take tiny little biopsies from a bunch of places all throughout the GI tract.  He will be sedated for this procedure.

Another possible diagnosis is an inflamed pancreas, which they are scanning and there is treatment for.

Then another possibility is some sort of anatomical malfunction or deformity.....that his gut just is not working right.  The barium swallow x-ray will show that sort of thing.

In the meantime, my boy is completely and utterly miserable and there is not a thing I can do to help make him more comfortable. He can hardly even sleep.   That is the worst part for me right now....I am powerless.

Day 49....back on the INSIDE

Wednesday, November 7, 2012

Dillon has been readmitted to the hospital.

His nausea and vomiting increased to uncontrollable levels in the past 36 hours.  This child worked so incredibly hard to comply with the medication regimen.  Through tears and anger and frustration he would gag down pills in between vomiting sessions because that is what is needed and expected.  But it just became too much.  His vomiting more than doubled in the last day and a half.

So, we are back on the inside.  He is sad and disappointed...feels like a step backward...feels like he failed somehow. We all explained to him that he has been the MOST AMAZING patient ever, trying to do everything in the face of such physical ailments.  We explained to him that this will let his body rest.  He can get his meds through IV for a few days, extra get hydration through IV, get the nausea medications through IV so he does not have to swallow them and then wait an hour for them to take effect.

As with pain, nausea is one of those things that if it gets out of control it can be extremely difficult to get back under control...and that is where we are.

This admission is supportive and precautionary.  They do no believe there is anything "serious" behind the continuation of the nausea and vomiting and lack of appetite.  They think it is a normal variant that comes with everything that Dillon has been through....but they want to support his system so that it can continue to heal.  Of course, there will be multiple tests and procedures to BE SURE that it is not something more serious that needs to be treated.

The big sad eyes on my boy......

The slow, long sighs from my boy....

The stoic face and unwavering focus in my boy.......

"I just want to make it all better Dillon....Mama wishes more than anything that I could take all of this away...ALL OF IT!!!  I wish you did not have a care in the world and that you were out on the court with your friends laughing, joking, running, sweating......Soon my love....soon."

Day 46...sweet slow sunday

Sunday, November 4, 2012

Dillon slept and slept and slept and slept today.....No joke.  He did not get up until 2:30 p.m. and that was with some prodding.  I did wake him a few times to....you guessed it....take pills and during the pill taking I kept taking his temperature thinking that maybe something was wrong, was he sick?  He assured me that he felt fine other than being EXTREMELY tired.  So I let him sleep.  At 2:30 p.m. I woke him up to go to the bathroom and informed him that we needed to go to the store.  We were out of some food items that are vitally important...cream for my coffee and mint tea for him :)))  He hummed and hawed and finally got dressed.  Off we went, via wheelchair, to Sprouts.

It was his first outing into the community since September 11, 2012, the day he started radiation and got admitted to the hospital.  HURRAY DILLON!!! He informed me that he was going to wait in the car and then I informed him that he was doing no such thing.  Out the wheelchair came from the back of the Land Cruiser.  I hung my 2 grocery bags on the handles on the back and off we went.  We bought a watermelon at his request (the other thing he wanted was fresh cherries...sorry buddy, no fresh cherries in Denver in November...I offered frozen and he groaned).  We got the tea and the cream and some other stuff.  We had quite a lot of people looking at us in the store.  Not every day you see a bald boy in a wheelchair wearing a mask, I guess.

Anyway, he agreed that it was not as hard as he expected and he kinda liked being out and about...a little.

We got back to the apartment and we had some tea.  Then the basketball game he wanted to see came on.  I went about my business of cleaning, reading, talking on the phone, washing dishes, and he watched on the ipad with the occasional interjection...."Mom, you gotta see this..."  His enthusiasm makes me so happy...just to hear it in his voice is the best gift of the day.

The rest of the stuff is the same: the pills, the nausea, the eating, etc.

My dad is heading up tomorrow and will be here by dinnertime.  Dillon will love to have a basketball watching companion and I will love leaving the apartment and getting some fresh air and "alone time."

Tomorrow, Monday, we will be in the clinic almost all day.  He has 6 hours of medication infusions and most likely (my prediction) some red blood cells.  These medications are given on a schedule throughout the transplant and post transplant process (about every 3 weeks or so) and tomorrow is the day.   We will pack the appropriate entertainment items, foods, beverages, and the ever so trusty pillow (he really hates those tiny little skinny plastic covered pillows at the hospital). 

Day 44....fish mobile

Friday, November 2, 2012

Dillon received a very special gift in the mail yesterday.  My brother is an artist...and he and his daughter made this amazing mobile for Dillon's room.  THANK YOU MIEL AND TODD!!!!!  Really a special and thoughtful project you did for Dill Pickle. 

Miel also had her whole 1st grade class make cards and send to Dillon, which he loved because they were so cute!!  THANK YOU MIEL AND AUNT KERRI!!!

Labs today were still really good.  Still no need for blood or platelets.....I am shocked quite frankly.  At this point, each time we go in to the clinic I bring books and food and the ipad and lots of stuff because I figure we will be there for hours getting transfusions....and then they come in and say he does not need any and we are free to go.  WOW!!!!  His platelets are holding steady at 55 and hemoglobin is 9.7.  Both are still very low if you were to check what "normal" levels are supposed to be....but for a post transplant kid this is FANTASTIC.  If you are wondering why I fell off on giving you the ANC each day...it is because I don't get that information from the clinic by the time we leave each time.  The hemoglobin and platelet labs come back quickly but the portion that we need to calculate the ANC takes longer and since he has not had to stay for transfusions we leave before it is available....then by the next appointment I have forgotten that I was going to ask for it...and the cycle begins again.  I did calculate one from last week and it was about 1300 so much lower than it was when he was on the bone marrow stimulating drug but his little body is holding its own right now.

Some small victories to share today.....
After the clinic visit I asked Dillon if he wanted to go to Red Box and pick out a couple of movies for the weekend.  SURE he says with enthusiasm.  I said..."You have to walk to the box with me to help me choose"....and he says...."Obviously mom."  The two things of note here are: (1) He agreed to get out of the car and walk across an additional parking lot and (2) He was a bit sassy with the "obviously" which is his regular personality shining through when I made the otherwise "dumb" statement.

Normally Dillon has been sleeping much of each day.  Getting up for a couple of hours and then retiring back to his room exhausted and sleeping for 2 or 3 hours. ....well today he got up at 9:30 and at 3:30 I insisted he go nap because he has a basketball game to watch at 6 and he will never make it through to the end without a little snooze.

The food of the day was some lo mein noodles.  He had about half a cup and never really complained of nausea although he gave me the big sad puppy dog eyes, so maybe he felt it but just did not mention it out-loud.  The doctor basically told him today that if he loses much more weight they will have to readmit him to the hospital.....that should be a motivation for getting more things chewed and swallowed over the weekend. Truth be told, I think they would increase his home TPN before they readmit him to stabilize his weight, but I was happy the doctor used the big scary "back in the hospital" line because I think it will get Dillon focused on the importance and the significance of his consumption. 

He continues to be HHV6-negative so the 5 hour IV infusion that we have to do every day will be ending next Wednesday or Thursday if the next test is also negative....YEAH!!!!!!!

Dillon has basketball on the brain.  He is on the ipad looking up teams, memorizing stats, plotting his day so he has energy to watch certain games.  It is FABULOUS to have him interested in something and showing motivation....he has gone weeks without really wanting to do much of anything at all.....a definite improvement.

Oh yeah....a little something for Shari

Thursday, November 1, 2012

I have gotten several inquiries over the past few weeks in this vein....."What can we do to help YOU Shari."  I have thought about that  and now that we are out of the hospital I have an answer.  The Santa Fe Buckleys are getting taken care of nutritionally by many friends.  It would be LOVELY to have that same support on my end....but how do we make that happen?? I have thought about it and after a recent visit to the AMAZING Whole Foods on this side of Denver, I realized that if people wanted to send me gift cards to Whole Foods I could go there and make selections every few days of their staggering array of prepared foods and it would be almost like I am getting home-cooked meals from friends.  This Whole Foods has an entire food court type section with about 10 different little stations to choose from.

So....if you have been asking me or wondering what you could do on your end to help me on my end...there you have it.  Cooking and grocery shopping just are not on the priority list, so I end up eating frozen dinners or weird things like a whole cucumber and a cup of noodles for dinner :))  What a blessing healthy, fresh food will be for me :)

My mailing address is:

Brent's Place
c/o. Shari Buckley
11980 East 16th Ave
Aurora, CO 80010


My utmost gratitude in advance for the love and care-taking that is being sent my way!!!

Day 43....let the eating begin

Thursday, November 1, 2012

Today, November 1, I am going hardball with Dillon's eating.  Each day I am going to "force" him to eat a few bites of real food several times.  They say if you don't use your stomach "muscles" then they forget what to do and they just sit still instead of churn around when food goes in...he is close to that point.  So this morning it was cream of wheat with a tiny bit of milk, butter, and brown sugar.  He ate it about 30 minutes ago...has been breathing through the nausea that hit as soon as he swallowed...do we have success on the first "FORCED" feeding....I don't know.  I just think if he would get started it would snowball and his stomach would get "stronger" and then he would be more willing and able to eat.  They started him on an appetite stimulant.  I am wishing we had easy access to medical marijuana to combat the nausea and the lack of appetite....won't that be more natural and better for him than the 4 anti-nausea meds and now the synthetic appetite stimulant???  Apparently the process of obtaining medical marijuana is arduous and takes up to 60 days, aside from the fact that much marijuana is coated in mold spots that could sprout in Dillon's body and kill him....darn it!!!


I told you about the costume contest at the hospital that Dillon insisted on staying for on Halloween.  Here are some photos of that.  It was staff groups from the hospital.  It was so fun.  There were literally hundreds of people gathered in the lobby of the hospital.  The middle of the hospital is open from the first to the fourth floor with glass walls all the way around....so you can stand on the first floor and look up to the 4th floor and all you see is glass and walkways.  Well each of the floors was FULL to capacity with people looking down through the glass to the first floor where the party was happening.  There was an amazing energy and fun spirit pulsing through the crowd.  I was nervous for Dillon because we were way up front. He was in a wheelchair and I thought to myself...."if this kid decides suddenly that he needs to get out of here because he is overwhelmed or feeling sick we are in BIG trouble".  There was wall to wall people for as far as I could see and there was no path or opening to escape.

wall to wall people watching the costume contest

Scooby Doo and the gang

Ms. Pacman and ghosts

Alice in Wonderland

Thing One and Thing Two

Ghost Busters

Cars

Very Hungry Caterpillar

The hospital "mascot" or logo

 Well....I have been writing this for a while and Dillon is now asleep....the cream of wheat is still IN!!!! YAHHOO

Sean and Luca left this morning.  They got picked up by a shuttle here at the apartment at 7 a.m. (Sean wanted to be super early just in case there were backups at the airport because of the closures happening on the East coast).  It is quiet and calm now.  We LOVE LOVE LOVE having our boys here but calm and quiet is not something that happens easily when they are here.  It was lovely to be a family again all in the same place, sharing meals, doing dishes, watching movies.  We even got to see the classic Charlie Brown Halloween...all crammed on our tiny couch eating candy and popcorn!!! 

Dillon's checkup yesterday was GREAT!!!!  He has not needed platelets since last friday the 26th (in the hospital he got them every other day, sometimes every day, and once in a while twice a day).  He also has not had red blood cells since he left the hospital.  That is HUGE!!!!!  It means that his body is doing 2 things: One.... it is "holding onto" the transfusions that he has received and Two.....his body is beginning to function and produce some of its own platelets and red blood cells.  Although they are immature and not fully functional they are beginning to grow, which means the bone marrow is really settling in and getting to work.  Tomorrow he has another lab check to see if he needs any transfusions.  Monday is a long appointment day because he is getting two IV medications that are administered intermittently throughout the post transplant period...and monday is the day.  So we will be in clinic for several hours.  He gets a private, glass enclosed room with a bed and a rocking chair for these infusions so we are both "fairly" comfortable.  I am able to leave and grab food if I need to.  There is TV and XBOX 360 in the room as well.  Dillon's preference is to sleep through the whole thing if at all possible :))  Those video games have no hold over this boy when it comes to getting his beauty rest...hahaha.