It's a '1'...and That's a Win!!

It’s a ‘1’….and that’s a Win!

We got the call and it was good news!   Garrett’s pathology report came back a “1.”  Scored from 0 – 4, live “bad” cells are scored with 0 being cell free and 4 being life threatening.  In July, we were a ‘3.’  This means that while bad cell this exist, we’re killing them and the prognosis is good for them to continue to die off after all the treatments.

It’s funny how you can really stressed that sometimes don’t realize it.  Sleep has not come too readily this week.  The little gerbils in my brain just won’t stop running on that d@mn wheel.  Last night they must have had some Red Bull or a pot of coffee, because those little devils ran their legs off. 

I laid with Garrett three different times throughout the night, but he’d keep waking up.  Partly from the pain at the incision cite, and partly from the worry he refuses to admit.  Kathy tried to sleep but it was fitful. 

Yesterday was fairly uneventful.  The day of the biopsy always seems to go relatively smoothly.  The last few days Garrett was wound like an 8 day clock and the night before he, Jessi and his “brother from another mother” Gavin, played in the pool and ran up and down the halls of the motel.  The morning of he stayed cool, flirting with nurses and doing pushups every so often to make sure his veins were open for the needles.  It really wasn’t until just before we wheeled him into the operating room that the fear, stress and fatigue finally took over.  My 14 year old not-so-little man fought the tears that eventually found a way down his cheek.  Kathy kissed him and asked him what scared him most, and he replied that he didn’t want to be in rejection any more.  I sang softly to him, “Jesus is calling” until he fell asleep in the O.R., again claiming that first tear as my own.  It’s our ritual and we’ve replayed it 35 times now.

He didn’t want any more hospital stays…no more treatments…no more chemo…no more picc lines…no more being away from home…no more serum sickness…no more having to pretend that ‘this’ is normal…no constant reminder that something was trying to kill him.  He needed a break.  We all did.  God knew that and responded His merciful way.

Normally the “day after” phone call comes to me.  I’ve designed it that way.  I want to be able to temper the news and relay it to Kathy in a “need to know” but not so “hospital-eze” flat and sterile manner.  Today, Kathy got the call.  It was good news, so they called her first. 

She broke down yesterday when they came out after surgery and told us Garrett’s heart looked good.  The pressures were better than a month ago, but we wouldn’t know the whole story until the pathology report.  She’s had so many nights of crying in her sleep, wondering if her baby boy would see another birthday.  She’s witnessed the pain he’s endured, the mental torture and the steadfast drive that keeps him pretending he isn’t scared.  She carried this beautiful living miracle for 9 months and has a connection that only mothers understand.  It’s the not knowing that is the worst, especially when everything we’d expected the past several months has turned out to be wrong.

Today the tears flowed again, even from me unexpectedly, as months of prayer, worry and hope consumed much of our time and energy.  Tonight, we celebrate life.  We celebrate the incredible mercy of our God and the unending love we don’t deserve.  We joined together on our knees in front of the Alter of our Lord and gave thanks for our many gifts. 

Tonight Garrett is bouncing around like a new puppy.   He is so happy and you can see the weight lifted off.  He told me that it’s hard to believe we don’t have to head back to the hospital again in the morning for more treatments.  While we’re still waiting for a few more test results, we do know that the T cells are dying, and that is a victory!  The relief is incredible………

Thank you all, too, for your undying support, love and prayers.  We are truly blessed.

August 3 ~ Feeling Better

I know it’s been a few days since I promised an update, but I guess I just took a break.  We’re doing well and Garrett is feeling so much better since one week ago.  The turnaround came Friday night.

On Monday, we got paroled back home where we could all sleep in our own beds.  I can’t tell you how much that does for the morale in the Ross Tribe.  After spending nearly three years of his life living away from home because he was sick, any time we can come home from a stint in the hospital is amazingly sweet medicine.

Garrett had a few tough nights last week, with Wednesday being the topper.  I went back to work that day while Kathy and the kids headed back to Denver for a checkup on Thursday.  By bedtime though, Garrett was again in so much pain that I could hear him crying in the background as Kathy called me, scared for our son, and said he needed me there.  Well I whipped and spurred to get there as quick as I could, thinking they might be in the hospital by the time I arrived.  Fortunately we didn’t end up in the emergency room, but it was a roll of the dice.  He finally fell asleep around 330 am, and by 730 we were in the Cardiac Clinic.

The serum sickness that Garrett’s being fighting as a result of the chemo needed to fight the rejection was being addressed through some other medications.  Unfortunately, those medicines also have some side effects and the combination made him sicker.  On top of the serum sickness, he got severe migraines.  The kid hurt everywhere.  While not extremely dangerous to his heart, it made for some very long days and nights.  We’ve addressed those with another round of meds and finally are seeing lasting relief.  The past few nights have been really good and he didn’t wake up in pain last night at all.  Praise Jesus!

He’s got more clinic visits in store and if all goes well until then, they will let him start school on time.  The lymphocytes are wiped out from the treatments but he still has some other white blood cells on board to help fight common infections.  He’ll just have to be very careful.  One of his teachers came by to visit today and the school is ready to help in any way they can.  Our support system continues to astound me, from friends and family to schools and strangers who’ve heard and are praying.  We are so blessed.

The kids have spent the past few days just hanging around the house and healing up.  Jessi adopted a couple of barn kittens who lost their mom, so the kids have been nursing them along.  Their eyes are just now open so it keeps them pretty busy making sure the babies are fed frequently and loved on.  This is the type of rehab that hospitals just can’t provide.

Garrett’s attitude continues to stay very positive.   Reality strikes again Tuesday as we head back to Denver for a checkup and meeting with the transplant team to see what steps we now need to take. Garrett has been on such a high lately, I’m really praying that his morale continues to stay good. When we know more, I’ll be sure to write.

We continue to be blessed beyond belief and the kids especially received a much needed reprieve from the constant uncertainty and fear, just by being home.  It was a trip that only days before we could only dream about. See, dreams do come true!

I’m most grateful to God for keeping us strong through this journey, and for the powerful team of prayer warriors who continually call on him.  The prayers work, and while the answer isn’t always what “we” think is best, we’ll defer to His perfect plan and ask for the grace to accept His will.  God bless you all.

JD

July 27\28 Battle with Serum Sickness

You know what I’ve learned?  I’ve learned I don’t know a daggone thing!  Every time I think we’re getting ahead in this fight, a counter attack somehow slips through the sentries and hits us hard.  I’ve learned that we can never take anything for granted.  I’ve learned not to let my guard down.  Ever.

Friday night went pretty well.  Maybe a little too well because it lulled us into a false and premature sense of comfort.  Garrett was almost to the point of being giddy on Friday because we were three days out from his last chemo treatment and thought the soreness and little rash he had was going to be it.  In his words, it was  “nothing I can’t handle.”

The serum sickness he experience in 2010, which was so severe it required additional hospitalization, has been haunting him since we were told they’d have to use ATG again.   ATG (ANTI-THYMOCYTE GLOBULIN) is an antibody that suppresses the immune system, preventing transplant rejection.   What happens with serum sickness is that the molecules lock together and get deposited in nerve endings, joints, bones, skin....you get the picture.   It causes extreme pain starting with the extremities.  Steroids counteract that, but it takes time.  The symptoms mimic meningitis so sometimes it’s hard to know the difference.  It takes about 14 days for this to run its course.  The result is a child in so much pain it’s hard to watch.

Yesterday morning he woke up with a little more rash and a sore wrist and finger.  His finger was so sore that we splinted it during the day because it hurt just to move it.  As the day wore on, he got more and more lethargic.  He said he was just tired.  By early evening, he was feeling very ill.  By 8pm, he was having trouble walking.  The rash was covering his body, hid lymph nodes were swollen and he was running a fever.  His face was the color of bad sunburn.  His arms, shoulders, neck jaw and groin hurt so bad he had trouble doing anything but lying down.  That was the start of a very long 24 hours.  By 10 pm he was crying from fear and pain, then getting mad for crying.  I paged the on-call transplant coordinator and we discussed admitting him for IV treatment of the serum sickness.  But Garrett is so afraid of the hospital that we decided to try oral meds.  They called in some prednisone and pain relief meds to a 24 hour pharmacy.  There we were in the middle of the night buying medicine and hoping it would kick in.  

With the help of the pain killer and pure exhaustion, he finally fell asleep about 2 a.m.   Sleeping fitfully, but sleeping just the same, until the pain woke him up at 430.  I was with him, like so very many nights before.  I was playing Kenny Loggins’ lullaby songs for soft background music.  The same ones we listened to when he was but a few weeks old in the Cardiac Intensive Care Unit at the old Children’s Hospital.  As I was watching him sleep and wishing so much that I could trade him places, I was praying that I could take his fear and pain.  I know God is watching.  I know He’s in every breath.   Yet I find it difficult sometimes to understand why Garrett has had to endure so much.   He’s a good boy.  He never has asked for someone else to have to endure this.  He just wanted to be a little boy and do what boys do.  It’s easy to talk about being a “warrior” and making sure we “cowboy up,” but little boys shouldn’t have to, really.  Still, we try to do that.  He met the pain of needles and separation from his momma when he was but a few minutes old.  Since that moment he’s been stuck, jabbed, poked, prodded, cut, wired, siphoned and has dealt with so much heartache and fear.  The whole family has.  Garrett was trying not to cry and with tears running down his face told me he just wanted to go home.  We all do. So much separation from home over the years.  A man with any character would give anything to remove this burden from his family.  I would.

I love my family so much but I’ve made many mistakes through the years while trying to “make up” for the pain they’ve endured.  Everyone has challenges and the journey we’re on follows a trail meant for us.  I realize I can’t change that course, but I can make sure we stop and picnic along the way to give them reason to stop and enjoy the beauty.  That is where my joy comes from.  There were so many times I've stayed awake for hours just to watch them sleeping peacefully and relish those moments when they aren't afraid of anything.

Tonight, Garrett’s finally getting some much needed rest.  He’s not in a lot of pain, thanks to the prednisone and pain killers kicking in.  We all gathered as a family and read scriptures and prayed our night prayers.  The requests remain the same.  But we also thank God for His mercy and the support system we have.   First thing in the morning, we’ll be in the cardiac clinic and determine our course of action from here on.  Once again, we’re claiming victory because we stayed out of the hospital so far.  I’ll take the night watch again and spend some quiet time with God.

There are so many of you who are supporting and praying for our little warrior. God bless you all and thanks again for caring. We can't take the edge off the pain on our own.  We’ll continue to be in God's tool box to use as He needs to accomplish His perfect mission. 

A few years ago I heard a song that I swear was written for and about our situation.  It speaks as if it were my very own voice and words.  I listened to it alone last night, and will again as soon as I post this. 

http://www.youtube.com/watch?v=_l09AJ9lXSE&feature=related

Thank you for your prayers.  Thank you for taking the time to care.  It does not go unnoticed. 

God bless you.

JD

July 24

Coming to you from deep within the battle, where the troops are inspired ~

Yesterday was an interesting one.  We got a lot more information on where we’re at and what may be expected in the near future, and then last night brought a few more challenges.  
 
Most of Garrett’s transplant team was in the mountains over the weekend for the Cardiac Climbers fundraising bike ride, so yesterday was the first day we could find out how they feel things are going.  They’ve confirmed that while this is a bad rejection, it’s certainly not on the scale of what we dealt with in 2010.  But we need to find a way to finally get rid of those nasty T-cell lymphocytes that are attacking Garrett’s heart.  The echos are showing no new negative issues, which means we’re at least keeping it from getting worse.  His blood pressure and heart rate are still all over the map, but it's to be expected right now.

Garrett had a nice talk with his transplant coordinator (his nurse) and she put him at ease more than he’s been.  Most of what he's feeling is due to the treatments and she did say that if he has significant reaction to the chemo it will come over the next few nights.   We’re hoping that’s not the case, but at 330 this morning he was in extreme pain and tonight it's setting in again.  Last night it ran the full length of both legs.  We did what we could to ease the discomfort, but there’s only so much we could do.  He and I have watched a lot of baseball and rodeo in the wee hours over the years.  It helps keep his mind off of the pain.

This afternoon marked a big step in the treatment process.  He finished his last dose of ATG, which means no more chemo treatments for now.  They’ll leave the pic line in for another several days to be sure we don’t need it again and we’ll make daily trips to the hospital for a bit.  Then we’ll back off to a couple times a week and finally, we hope to bring him home by a week from Friday.  If all goes well, we’ll make the twice weekly trips for clinic and then in another 6 weeks after the medicines have had their time to do the work, another biopsy will be scheduled.  We don't know if he'll be able to start school on time yet.  The doctors said it will have to be a "game time" decision.  With his immune system challenged even more now, caution is a verb. 

Garrett remains strong and determined.  I’m so proud of him for the attitude he’s taking throughout this ordeal.  He’s lost his summer, lost baseball this year and spent a couple months away from home since April.  Yet he is happy most of the time and just wants to “kick its butt.”  His baby sister's birthday is tomorrow and all he could think about today was that his rejection has cast a shadow over "her day" so he directed me to buy her a book on horses.  If she can't be with her own, he wants her to have a substitute.

I was admittedly a little down the other day and was brought back to reality by an old high school friend who reminded me to listen to the Jimmy Valvano speech at the 1993 ESPY awards.  I’d heard it years ago but will keep it on my play list from now on.  If you’ve never heard it, treat yourself.    After listening to it myself again and feeling a little shame for temporarily not focusing on my many blessings, I had Garrett listen as well.  He smiled and gave me a thumbs up.

Jimmy V was a super hero in his attitude toward life and his battle with the cancer that eventually took him home.  He adopted an incredible personal philosophy for living that can enable an ordinary person to accomplish extraordinary things.  His enthusiasm for life, dreaming big, and working hard were the elements that allowed him to be successful.  That’s what we all need.  Big dreams, love of each other and this precious life of ours, and never giving up.  Jim Valvano once commented, “There are 86,400 seconds in a day. It’s up to you to decide what to do with them.”  He said “In a world where too many people simply sit on the side lines and watch their world as it happens, I plan to participate.  I am going to be involved in every second of every day of my life, and guide my own destiny.”  Touché, Jimmy.  Touché.

So that is what we plan to keep on doing.  We’re going to fight this battle with a smile, because to miss the fight would be to miss the opportunity to be victorious.

Saint James said to “Consider it all joy, my brothers, when you encounter various trials, for you know that the testing of your faith produces perseverance.”  Patience, Prudence and Perseverance.  Words to live by.

Joyously writing from the front lines,

JD