Day 161......Welcome Home

Wednesday, February 27, 2013 

This is gonna be a long one.......

We had a wonderful adventure of leisure on our drive home from Denver.  We stopped often to stretch our legs, go to the bathroom, run around, and eat.  It ended up taking us 11 hours for a 6-1/2 hour drive.  We had lunch in Pueblo, Colorado, and dinner in Las Vegas, New Mexico.  We came upon a closed highway at Raton pass near the New Mexico boarder while they cleared the road from a sudden snow storm.  We stopped and ran around in the cold, blowing snow at as many rest stops as possible.  We ate junk food.  We listened to music and sang.  We laughed a lot and we were truly relaxed and just enjoying our time together as a family.  When we finally pulled into our neighborhood both kids were sound asleep but Sean and I were chatting quietly.  I noticed a few balloons on a tree in front of a house several houses up from ours and I thought to myself...."Oh, I wonder whose birthday it is."  Then I saw more balloons, and then more balloons.....and then I realized that they went all the way down the street (we live at the end of the street in a cul-de-sac).  At that moment of realization Sean and I both saw the first sign....yes a sign.....posted on the fence of a neighbor a few houses up from ours.  Then the next sign....and finally our house with balloons and another sign.  WELCOME HOME DILLON with glow in the dark paint, sparkles, ribbons.  It was dark, it was snowing, and the tears flowed freely.

Green and white balloons of course (Celtics colors)...see the sign on the fence with the gold ribbon trim??

Sign on the fence in front of our house

Balloons on the fence in our front yard

Sign next to our front door (they attached a marker below so that people could stop by and write notes on the sign)

What we found out later.....my mom took these photos in the afternoon.  She had come over to the house to do a final dusting before our arrival.  Several neighbors made the signs and blew up the balloons.  They had to hang the balloons twice because as they were hanging the first set there was a crazy wind storm with some hail and many of the balloons popped....so they had to go back and blow up more and start again. 

The past week has been overwhelming for all of us....but I think hardest on me (could anyone see that coming??).  I am trying not to rush myself and worry about getting "everything" done in the first few days.  The list of tasks to handle is daunting and I have had myself a couple breakdowns with lots of tears.  I think I was in such a state of stress and anxiety for so long, that my body and my mind are finally relaxing a little bit and the release of emotions is huge.  We have now been home almost a week and we are settling in nicely.  Dillon and I took Luca to school on Monday and Tuesday.  We were completely inundated with love and support and hellos and hugs and much attention both in the morning at drop-off and in the afternoon at pick-up.  It has been a beautiful gift to finally give the hugs and share a smile and a tear or two with many of the people that have been supporting our entire family all these long months.  Dillon has been shy when coming upon friends....they are nervous and awkward and are not sure what to say to each other....plus Dillon has to wear his mask and he feels quite self-conscious about that in such a familiar setting, especially when everyone is looking at him as we walk by (both because of the mask and because most of them are seeing him for the first time since he left school in mid May).  So to any of you Waldorf kids that are reading this....just walk up to Dillon, say hello or even give a hug, try to talk about something you are doing in school or at home, or ask him to join you in an activity like walking around or playing basketball. 

A bit more about Dillon....that is why most of you are here reading this blog in the first place, right :))  He has had more energy and is more relaxed.  His humor is back....he laughs and jokes and teases (which was something he did not do much in Denver).  He talks more and he interacts more.  If you were one who tried communicating with Dillon while in Denver you know that most of the time he refused the phone call and when he did accept it he did not talk much...but now he is Skyping and Face Timing family, and talking on the phone......in fact insists on answering the phone most of the time and is eager to chat with whoever is calling.  He is playing with the neighbor kids.  Luca is glued to his side....they do everything together right now.  Luca is sleeping in Dillon's room on the floor because he just cannot bear to be away from him for all those hours in the night.  Dillon is eating fairly well and still has to work each day to drink enough.  His stomach has been upset a couple of times but I think those were more situational (nervous, excited, ate something that he was not used to).  Today (Wednesday.....exactly 2 weeks after his port and broviac were removed) he is going swimming.  This is something he has missed terribly and bitterly ever since he was diagnosed.  Dillon was angry and disappointed all summer at not being able to swim....so this is a BIG DEAL.  Luca (who also loves to swim will be in school when Nana takes Dillon swimming) was nothing but excited for his brother....not envious or angry or even wishing he could go along, just plain old happy that his brother was getting to do something fun.  The surgery sites have healed beautifully. They are completely closed without so much as a scab.  It took weeks for Dillon's original port insertion site to heal (his body was in a state of debility and assault from both the cancer and the chemo).

It has been too cold and windy for Big D to play any B-ball yet....but that hoop is outside waiting for him as soon as it warms up a bit.  Oh yeah.....one of the first things the boys did when we got home was play music together....and I wanted to share the sweetness of that moment with you.  Dillon is on viola and Luca on cello.

Now a quick flash back to our last days in Denver.....Here are some photos of the fun stuff we did.  We packed, we cleaned, we hung out at Brent's place, and we had fun reestablishing ourselves as a family.

First is an indoor trampoline park called Jump Street.

Resting at Jump Street

Sean and Luca flying high

Sean stuck in foam pit

Dillon relaxing in foam pit (boy did we sanitize after he got out of there!!!)

Dillon on a tramp under a hoop...practicing his fade away jump shot

Luca was laughing so hard he could not get out of the foam

Next is the Celtics game.  We only had phone cameras so we did not get any good shots of the players on the court.

Celtics warming up on the court in Denver

Luca with his all green outfit...he even has on green shorts with black long underwear.

Dillon in his official Celtics gear.  

A couple of cool things......one is that the boys made posters to take to the game.  Luca made the I "heart" my Celtics poster.  Dillon, on the other hand, made something so heartwarming and original.  First a little background story.....one day at clinic a couple of weeks before the game Dillon and his nurses were talking about the Celtics and one nurse joked..."oh, you should make a poster that says I love my nurses."  They all laughed but then Dillon told them he was going to do it.  The nurse told him that she was just kidding around but Dillon insisted that he was going to make that poster.  I am sitting and observing this scene and I think to myself...."yeah right...Dillon is going to make a poster...he dislikes crafty projects."  Well....I am happy to say that I was wrong.  I underestimated my boy.  He was very serious about this poster.  It seemed like he wanted to say thank you for helping take care of me, thank you for being here with me through this entire process, thank you for caring about me .....

Dillon's game poster.......priceless

Luca designed this all by himself...he was very proud of his work

One last Celtics game story.  Before we left for Denver in August one of Dillon's good buddies told him about the Denver vs. Celtics basketball game and that he and his dad were going to the game in Denver in February.  This boy is as big a Celtics fan as you will find.  We ended up getting to see them at the game.....what a treat on our last night in Denver.

I think the smiles and the green and white says it all!!!

Homeschooling math is calling my name so I am closing this for now.  We head to UNM in Albuquerque on Friday morning (1-hour away for those of you who are not familiar with New Mexico) for Dillon's first followup visit.  He will be seen once a month at UNM and once a month in Denver.

Update...

Sunday, February 24, 2013

I will post our welcome home when I get some time and energy.  The transition back is very overwhelming and being on the computer for an extended period is not in the schedule right now.

Please know that all is well.  Dillon is doing fine.  I will share more in the next week.

Day 153......the final day

Tuesday, February 19, 2013 

Dillon's labs from clinic this week were great.  The only issue was he lost 1.2 kg (2.5 pounds) this week....darn it.  The surgery, the excitement of Sean and Luca arriving, the anxiety of going home, coupled with his first needle poke lab draw without his port or Broviac this week is causing a definite altered appetite.

Today we went to an indoor trampoline park.  Talk about some serious aerobic activity!!!  Dillon was quite active and had fun with his limited energy reserves.  Luca jumped until he was bright red and completely out of breath....and then he jumped some more.  That kid has the stamina of a wild mustang.  Sean and I got in on the fun too.  I will post photos but you have to wait a few days because I already packed up the computer.

Dillon is geared up for the big game....literally.  He has purchased several Celtics items and plans on wearing the whole outfit tonight.  I will post photos of that too..in a few days.

We have packed everything that we don't need in the next 18 hours....the pile of stuff is sizable so Sean gets to work his "magic" loading the Land Cruiser in the morning.  He is a master puzzle creator and never fails to amaze me with how much stuff he cram into a vehicle.

We are over the moon excited to be returning home.  We have been in Denver for 6 full months and 3 months in and out of UNM....so Big D and  I haven't really lived at home for 9 months.  There are apprehensions on all of our parts...but we will work as a loving team to help support each family member through their transition with our reunited family.

Another leg of the journey is complete!!!

148.....out with you

Wednesday, February 13, 2013 

Everything went smoothly.  Dillon got one of his requests met, which was to take home the stuff that was implanted.....see picture below.  It is actually against hospital policy...but we had a great team of nurses in the OR who helped us out :))  His unmet request was that he be given a video of the surgery...they said it would be fine if they had the equipment and the personnel, neither of which were available today.  The doctors and nursers were all impressed....they have never had a child ask for a "movie" of their surgery before.  Leave it to Dillon to ask the questions and want the information that impresses the heck out of the medical staff. 

in the preop area waiting for surgery

Paging Dr. Buckley------Dr. Buckley

My super stylish outfit that I get to wear into the OR.  I stay with Dillon until he is asleep, then I go to the waiting room.  I saved this for Halloween next year :))

Chest shot of Broviac this morning before surgery

chest shot of 2 bandages after surgery.  There are a couple of stitches under those gauze bandages.  He can take a shower tonight and in 3 days the bandages can come off.  The surgeon laughed when Dillon asked...."How long until I can swim?"  The answer was 2 weeks.

Here is the internal part of the Broviac (they did not give us the external part that you see hanging on his chest above).  This piece went from the opening in his chest straight into his heart.  It is about 8 inches long

This is the port that he got installed in Albuquerque 2 days after diagnosis.  The whole purple part was under his skin on his upper chest and the white tubing ran under the skin into his heart. The tubing is about 6 inches long.

just so you can see the size....port vs quarter

Line comparison.  The one on the top is the port line and the one on the bottom is the broviac line.  See how the broviac is about twice as big.  The larger line was required for the transplant, which is why he ended up with both.

Now a quick little comparison photo.....what a difference 6 months makes....

This is Dillon last week getting his PET scan.  He was talking, laughing, feeling just fine.

This was Dillon getting ready for radiation in September.  He was cold, he was sick, and he was terrified.

A few days ago he was out on a field kicking a football with some kids he met at Brent's.

Modeling his new jacket.

So as you can see, and as you already know.....Dillon is doing great.  He has made amazing, fantastic, huge progress and we are counting down the days until we get to go home.

Day 147.....real quick update

Tuesday, February 12, 2013 

Dillon's labs are back.  The vitamin D has increased by 3 fold, which is just a bit below normal, so we get to reduce the dose of the supplement for the next month...then there will be a recheck.  The zinc has normalized as has the calcium.....Yahoo....a few more pills removed from the pill box.  He is down to 22 pills a day!!!!  His bone density will be rechecked when we return to Denver in March and a decision will be made at that point regarding continuing the vitamin D with calcium.  Another concern is that he has not grown in height in 6 months.  They don't start to really worry until growth has not resumed in 9 to 12 months....so that will be something that I watch very closely.

We check into the OR bright and early tomorrow for the port and central line removal.  He is SUPER excited (no I am not being sarcastic).  The prospect of showers, baths, and swimming is keeping his mind positive and calm in regard to this procedure.  I will let you know how Big D is doing tomorrow evening.

Oh yeah, the other cool thing we get to do tomorrow is drop off a big bag of unused/discontinued medications at Walgreens.  We are cleaning out the cabinets and all of the medical supplies that we won't be needing anymore after tomorrow morning and we get to drop those off at the hospital for the Doctors Without Borders program.  This is very therapeutic, extremely cathartic, and amazingly liberating for this sweet, powerful, courageous boy. 

Day 143.....searching for the gold

Saturday, February 9, 2013

I just shared this with a dear friend and I thought it was so poignant that I wanted to put it on the blog......She asked me if things are crazy busy hectic when Dillon has appointment/clinic days and this was my response.

Things are very mellow most days.  That is one gift we have been given here in Denver.  Me not working, Dillon not in school....we have leisurely days for the most part.  We have hours of downtime (sometimes that makes us crazy), we read, we play board games, we go for walks, we go for drives, we watch movies.  But we don't have the rushing around and the busyness that "normal life" holds.  I know it will creep back in just about the minute we walk in the door at home...but for now I am enjoying our unstructured, unscheduled, uncommitted time.  I constantly search for the little nuggets of gold that are sprinkled throughout this entire process, although sometimes hard to find... this is one of them :))

I forgot to mention that Dillon gained weight this past week....YAAHHHEEAAA!!!!  Pretty sure I forgot to mention this to Sean or my parents this week in the midst of all the other information....so for those of you who are following his weight....he is back up to 33.7 (two weeks ago he was 33.1).  The nurses gave Dillon a hard time that now he is going to have to stop eating every crazy high calorie thing in sight or he might end up on the chubby side of the scale.  So today Dillon was busy walking up the stairs and playing basketball so that he could regain his muscle mass and his strength instead of just "empty pounds"  :)) 

We got back a few of the lab results from the Wednesday clinic visit.  First, his white blood cell count, hemoglobin, and platelets are perfect.  People with cancer don't have perfect counts....so this PET scan scare cannot possibly be a recurrence...right????

One of the concerns I mentioned a week or two ago was his liver function.  Both of the levels for liver functioning (AST and ALT for those of you who know what that is) are trending back down toward the more normal level....still not "normal" but much closer than they were in the past few weeks.  Basically this means the doctors have taken "worry about the liver" off of the list of things for me to think about.....hahahaha.  His blood pressure is also continuing to improve.  Remember he discontinued his blood pressure med a couple of weeks ago and we had to see how his body handled it....well it is doing beautifully.  As we continue to taper meds things tend to fluctuate as Dillon's body adjusts.

A week from tomorrow (next Sunday) Sean and Luca arrive via airplane for their final trip to PICK US UP AND BRING US HOME!!!!!

Day 141....Ramp up those prayers

Thursday, February 7, 2013

I am not implying by the title that anyone has forgotten about us or is not continuing their prayers for us.....but we got a bit of, shall I say, concerning news yesterday.....so we are just asking that you continue to keep us in your thoughts and send us all that powerful energy that has gotten us through so much already.

Dillon had a PET scan yesterday.  This scan is used to show any metabolic activity within cells throughout the whole body; it can show infection, cancer, and a variety of other anomalies.  Dillon's last scan was completely normal in November (remember he had a swollen neck while in the hospital and it turned out to be nothing more than a fluid accumulation that cleared on its own).

Well, the scan yesterday showed some activity in the lymph nodes in his cervical area (near the collar bone).  Yes, that is where his original lymph node involvement was.  The doctors are cautiously concerned because of Dillon's history (the fast growth of tumor during the first course of chemo and because of the location).  There are some reasonable explanations for this test result.....with the most likely being that he is fighting something (bacterial or viral) and these are the nodes that have chosen to activate in an attempt at an immune response.  We all get swollen lymph nodes (you know that sore neck/jawline area you feel when you are in the midst of getting a cold).  He has had some blood work done, which won't be back until early next week, to see if there is an identifiable virus in his body that is causing these nodes to be "active."  There is the possibility that this is a return of the cancer.  I know it seems impossible given all that he has been through and how well he has been doing physically and from a laboratory standpoint; but this does happen on rare occasion.  Now that we are tapering Dillon's anti-rejection meds, it is possible that his body is fighting a bug but it is also possible that the lymphoma is reactivating.  Cancer treatment is an inexact science, every person's body is different, and there is still so much they don't know.  There could have been 1 single cancer cell hiding out somewhere in Dillon's body.  The new immune system might be able to fight it off if that is the case, or it might not and then we have a recurrence of cancer on our hands.  We are all worried sick and I am sure you are asking the same things we asked....what now????

First of all we will repeat the PET scan in a month to monitor these nodes.  They could be gone, they could be the same, they could be bigger.  If it is either of the latter two then most likely a biopsy will be done.  The doctors and I discussed biopsy now.  As always we weigh the risks and the benefits, and given that there is a possible "simple" explanation for these nodes being activated, the risks of biopsy at this point outweigh the benefits.  With that being said, the new scan results have been sent to UNM and the original diagnosing doctor and radiologist are going to review this new information and compare it to the old scans.  They could decide to do a biopsy sooner rather than later....or not.  As usual, we are all well-versed in the overload of information, the fear, the worry, and then the need to just sit with the information and wait for the experts to construct a plan that makes sense given all the information and experience they have.  In the meantime we are all trying....and you should too....to not let the old imagination get the best of you.  Focus on those nodes having a little immune response trying like mad to fight off some sort of illness that Dillon has picked up...that would be a good thing!

Pray, pray pray....focus on healing and on peace for Dillon (I can only imagine what is running through his mind...he has not talked about it yet but he is sleeping more than normal and he is withdrawn, so I know his brain is on overload).

One more major event, which is actually a really good thing.  Next Wednesday Dillon is getting his Broviac and his port removed.  This does mean he is going to have to deal with a few needles every month, but he has been very brave and realizes that getting these things out of his body reduces his risk of infection greatly, it simplifies his daily routine, and it means that he is closer to the end of this journey.  The doctors and I talked about delaying this removal just in case Dillon has to undergo some extra treatment because of these lymph nodes/cancer recurrence, but again the risk/benefit was weighed and we all agreed that Dillon would benefit medically, physically, and mentally by going ahead with the removal.  Dillon is VERY excited about getting this surgery done.  He can shower, he can swim, he won't have to have the daily flushing of lines with saline and heparin, and there will be no more weekly dressing changes which are excruciatingly painful.

The vitamin D/zinc/calcium situation will be re-visted next week when labs come back, as will the liver issues that I mentioned a few posts back.  His white cells, hemoglobin, and platelets are still holding steady :))

Okay, that is all I can think of at the moment.  As things evolve I will keep you all posted.  Thanks in advance for the extra dose of energy, white light, positive power, and prayer.

Oh yeah....YES we still get to go home.  This little bump might mean an extra trip back to Denver but we are still scheduled to get out of here in 13 days...YAHHOOOO!!!!!!

Day 137...Family and Fun

Sunday, February 3, 2013

I completely overlooked the fact that I did not give you guys an update about this week's clinic visit.  Sorry about that.  Everything is stable!!  We are carefully watching a slow trend of liver function possibly becoming abnormal...which is technically normal, or rather expected from time to time, because of all the meds that are flowing through the liver.  Sometimes they discontinue or change certain meds if the liver begins to "malfunction."  We are not there yet, and hopefully with the expected upcoming med tapers and discontinuations over the next weeks his liver will rebound without any additional therapy needed.

Two major events happened in the medication world this week.  Dillon is now off of ALL of the mouth care regimen that he has been on since transplant.  You know the celebration over the nose spray....well this was not quite as big of a deal but he is happy to mark one more thing off the list of stuff he has to do each day.  Obviously, he still brushes 2 to 3 times a day but the extra mouthwash and swishes are done!!!!  Dillon has begun his 16-week taper of the final immunosuppressive/anti-rejection medication.  This is a major milestone.  It means his body is ready to slowly begin putting up its own fight against invaders.  The taper is very slow so that the immune system has time to ramp itself up. At the end of the taper, which ends in April, Dillon's immune system will be a bit stronger and more functional that it is now.  Yeah!!!!

Luca flew on the airplane by himself for the first time on Thursday.  He was so super excited and so mature.  A funny scene of Luca counseling my mom on where her car was parked at the Albuquerque airport.  He really wanted to make sure that Nana could find her way back to her car easily.   He came off the plane on our end looking like the coolest most stylish 8-year-old I have ever seen.  He had picked his favorite outfit several days before and had it hanging in his closet in preparation for his trip (his fear was that if his dad did not do laundry on the correct day then his outfit would be dirty on the day of departure, so he hung it in his closet and there it waited until the appointed day, shoes and all....how cool is that??).  Luca refused to bring any toys, games, books, anything onto the airplane.  He insisted that he was just going to look out the window and enjoy the ride.  He sat next to an older lady who was quite smitten with the little fellow.  She gave him her peanuts and an extra coke, and I am sure they chatted about random things the entire flight.  The lady waved goodbye to him in the airport and she gave me a huge grin with a double thumbs up....I think she enjoyed her time with Luca :))

Sean arrived Friday midday.  I blinked and they were both gone.....Sunday arrived so fast.  I HATE THAT!!!!

I wanted to share a basketball game that happened on Friday morning after the Brent's Place community breakfast.  Notice that Dillon is without his mask.  It was a beautiful day outside and Dillon asked if he could please please please play this game without the mask (it is so hot and hard to breathe).  I relented.....the kid has to have some normal moments, which I felt outweighed the risks of him being outside without a mask for 30 minutes or so.  He also pulled his sleeves up to catch those rays and get his body pumping with vitamin D.  Our theory is that if he gets more vitamin D from sun than the doctor is expecting, then maybe Dillon can stop taking the huge dose of vitamin D via pill sooner rather than later.  We will see if our little experiment works out. :))

Dillon going for a basket

Luca doing tricks with Sean from Brent's Place

Luca trying to guard his brother...but Dillon sneaks around him

Quick pill taking break (Luca brought his vitamins down to take with Dillon so he wouldn't be the only one taking pills outside )

The upcoming week is another Wednesday clinic visit and a followup PET/CT scan.  I think I talked before about how this is just part of the protocol and basically they are making sure there are no active areas of cancer cells throughout Dillon's entire body.  This test will happen every 3 months for the first year and then every 6 months until year 3 or 5 (I cannot remember that detail for some reason....maybe it is just too far off into the future for my brain to keep on hand at the moment).

Oh yeah....I almost forgot.....our sports extravaganza continues.  We got to go to an NHL (National Hockey Leauge) game.  The Colorado Avalanche versus the Edmonton Oilers. Our seats were in what they call a "private suite".  We had to scan our tickets at the door that was labeled "Suite 60."  We walk in and there is a little kitchen/bar area and 12 cushy seats in this little room that opened up to the ice with a fantastic view.  No the drinks and the snacks were not free, but we had a blast (especially Luca, of course, who is now more committed than ever to his future hockey career).  Dillon and I now have a running joke about how many times we can actually go to different events at the Pepsi Center.  Now every time the phone rings in the apartment we look at each other and laugh because we just know it is going to be someone offering us tickets to some sporting event....weeeeeee....fun times!!!!