Thoughts and Prayers for Declan

[Pullstart 62,838]

Here’s a little back story…  I have no idea how their financials are looking after all this time.  I know some of you have donated to the gofundme page, and we thank you for the monetary support!  Declan truly needs a miracle.  The docs are doing everything they can, but nothing is seeming to improve.

 

 

 

things continue to be a one step forward, two steps back.  It’s rough to see happen.  It’s hard to hear of such heart break.  Here’s an update from Ashley, my wife Taylor’s cousin (nearer to sister status)

 

I wish.  Still treading water.  The oncologist did start a very low dose second round of chemo a couple of days ago even though they couldn't do a bone marrow to see how much cancer there is.  They are afraid if they waited too long it would get uncontrollable.  So they are doing low dose because he can't handle full dose just to "keep house" on the cancer.  I found out only 500 kids under 2 are diagnosed with AML a year, so it is quite rare. And only 15-20% have his Kmt2A mutation.   Because of his mutation, he will need a marrow transplant to completely remove the cancer.  That can only be done on kids with fully functioning organs.  He's struggling in that area. I just wish all of our wins would stay wins and stop the one step forward 2 steps back thing.  He's fighting.  Something little changes everyday.  Sometimes for the better, sometimes for the worst.  I'm here. Staying hopeful.  It's getting harder, especially with Christmas coming up, not having us ALL home under one roof.  But I'm OK.  The kids are OK.  We are learning big lessons right now.  The kids, and Josh and I will be stronger, better people for it.

 

Gaudete Sunday.  The 3rd Sunday of Advent. The Sunday of JOY. 

I would be lying if I claimed to "feel" joyful today.  As I sit here typing, the oncology nurses are giving Declan his 5th dose of chemo during his 2nd round of therapy. 

I have had a hard time putting words to paper lately.  Part of me wanted to wait to post an update, in hopes that we get "good news" to share with everyone praying for him.  The good news has not come the way I have hoped...yet. 

Similar to my unmedicated labors for each of my babies, I have reached the point where I feel like I can't take it anymore.  During labor, it always took my husband and midwife, encouraging me to renew my strength and push harder after reaching the point of complete exhaustion.

Now, it is taking my faith, prayer, and whispers from Our Lord to get me through.

While Declan is still in stable condition, not a lot has changed...which is very hard for me to write.  Because of the comorbidity of his illnesses, we might get good news for one system and bad news for another.  The complexity of his condition makes it very hard to give updates as they change on a daily... even hourly basis.  

Last week, he had very encouraging chest X-rays.  His lungs began showing increased aireation, and the doctors were encouraged about the idea of challenging his lungs to potentially come off of ECMO.  Last Monday, they were also supposed to do a bone marrow biopsy to check the level of lukemia in his marrow. 

Unfortunately, his fungal infection caused too much havoc on his little body, to the point where his blood pressure and platelet counts were not stable enough to do the biopsy.  

The low platelet count also caused all of his IV and cannula sites to start bleeding with any movement from him.  They had to paralyze him for 2 days to get the bleeding under control...which was not good for his lungs. 

Also, his ECMO machine clotted and needed to be changed.  The presence of the new plastic tubing caused him to have edema...once again, not good for his lungs. 

His need for high doses of epinephrine and norepinephrine to keep his blood pressures stable has made it impossible to give him feeds through his digestive track.  (They can only give feeds if his EPI requirements are low.) The lack of feeds has caused his bilirubin to skyrocket even more.  

Yesterday and today, there was evidence of a "minor pulmonary hemorrhage" because of the amount of red tinged secretions coming from his lungs.  They are treating it with inhaled cyklokapron through his ventilator.  

These complications have caused all of his lung aireation to dissappear, and we are back at square one with his lungs.  

All of these situations (and others I have not mentioned) have set him back overall. 

Now, onto more positive things: 

The unexpexcted emergency change in his ECMO circuit has seemingly been beneficial in fighting the fungal infection.  Although we can not remove the cannulas in his neck, any fungus that had built up in the plastic tubing was removed.

He has not grown a positive culture for the fungus since.  

When they made the change for the ecmo circuit, they did not have to do any chest compressions.  His heart was able to beat on his own during the change.  This was not the case during the last change where they needed to give him a lot of chest compressions for support.  

There are still no lukemia blasts in his bloodstream, and his good white cell count has recovered very quickly after the first round of chemo.  Although they were not able to do a bone marrow biopsy, the oncologist, using a "poor man's view" of his situation, are confident that his lukemia is still at a manageable level.  Their concern, though, is if we wait too long, the lukemia could quickly take over. Unfortunately, his body is too weak for full doses of chemotherapy. Fortunately, his lukemia levels seem low enough that a lower dose of chemo will hopefully still be enough to keep it under control. The oncologists decided to move forward with the second round of chemo at 25% dosing to "keep house" on his lukemia while we continue to fight through his other comorbidities.  

He remains appropriately alert and is constantly moving...like a toddler should.  He responds to my voice and has been handling sitting up in his chair well.  Unfortunately, he moved a little too much the other day and he had a major bleed around his cannula.  They had to turn his room into an operating room  for a few hours to get the bleeding under control.  

If someday he becomes a roller-coaster designer, he has a lot of experience with creating exciting "ups and downs"!

On Sunday, November 27th, his doctor were pretty sure he had no hope.  In their words, "his prognosis is atrocious."  He wasn't supposed to live through the day and he had a positive turnaround that they could not explain. 

Here we are 2 weeks later.  He is still fighting.   

He is still critically ill.  I am exhausted emotionally and physically being on this roller-coaster everyday. Our family is going through a trial that we don't "want" to have to go through.

But we are still finding JOY in the midst of this trial.  

While we are not smiling, our grief and tears are proof of love.  

While we wish this had never happened to Declan, it is making our hugs more tender, our "I love you" more sincere and raw. 

While we don't want to be one of the families touched by cancer, the fact that we are, has caused us to be the recipients of an outpouring of love and support from family, new friends, old friends, and complete strangers.  

The handwritten letters, meals, supportive comments, offering of prayers, and other outpourings of love and support is something we have never felt before.  

I know that Declan's suffering has been good for our souls.

"Therefore, we are not discouraged; rather, although our outer self is wasting away, our inner self is bring renewed day by day. For this momentary affliction is producing for us an eternal weight of glory beyond all comparison, as we look not to what is seen, but to what is unseen; for what is seen is transitory, but what is unseen is eternal".  2 Corinthians 4:16-18

After I saw this morning's X-ray, I realized it was Gaudete Sunday.  How ironic.  I did not feel happy.  

But Our Lord whispers sometimes loudly and sometimes very softly. 

As I opened my social media to make this post, the first thing I saw was Fr. Hammond's homily from the Diocese of Nashville:

"This is known as Gaudete Sunday. The Sunday of Joy. lt's a day when
the insistent penitence and purification of Advent give way just
briefly to complete serenity. It's Joy Sunday. The prophet says that
those saved by the Lord will be "crowned with everlasting joy." What
does that mean? What is joy? It's not the same thing as happiness.
Hard as it is to say, we are not entitled to happiness. Now please God,
we will be mostly happy in our lives, and it's good to strive for that.
But if we're not happy from time to time, it's ok. It's to be expected.
Happiness is an emotion: all emotions come and go, and life can be
hard. Joy is different: joy is stable, joy abides, joy is durable. Because
it's more than an emotion: it's a posture, it's a way of living, it's a fruit
of the Holy Spirit. Joy is connected to things like hope, serenity,
confidence, assurance. Joy is knowing how the story ends. Joy is
knowing that, even if I'm not particularly happy right at this moment.
everything will be all right in the end: God always gets the last word;
life triumphs over death; and no cross lasts forever." - Fr. Hammond.

Indeed.

No cross lasts forever.  

Amen.

 

[Pullstart 62,838]

If you feel so inclined to support the Garnsey family, please visit:

 

https://www.gofundme.com/f/the-garnsey-family-cover-hospital-bills?qid=3728cdf7411d91845fee4d4fbf288c8d
 

We will be making another trip to TN around the new year.  We’ve collected clothing and gifts locally to bring to the family as well.

[SylvanLakeWH 25,535]

Continued prayers Kevin for Declan the entire family...

 

Godspeed.

[sjoemie himself 3,068]

Bit lost for words after reading this. Eventhough I hardly know you @Pullstart or your family and little Declan I'm wishing you all the best and Gods blessings. 

I'm hoping the miracle you're all praying for will indeed happen.

[Pullstart 62,838]

From Ashley today.  
 

They are starting plasmapheresis today to try to remove toxins.  They said if this doesn't work, there is nothing more they can do for him.  Normally, kids on ECMO are hypotensive, and they have to give drugs to lower blood pressure because the machine is doing everything for them.  In Declan's case, they are almost giving him the limit of what they can give to support his blood pressure and just keep it high enough for him to survive.  He is so sick that his body is shutting down.  

They said they are going to keep supporting him, but early next week, we might be in a place where hard decisions need to be made.  They were frank that they don't think the Plasmapheresis machine will work.  All the data says he is too sick to recover from the organ failure, let alone the cancer.  

Please pray for our family.  We would gladly accept a miracle from God.  But know that it may be His plan to take Declan to Himself.  Declan's name does mean "Man of God". 

I'm just so sad.  I'm sad for my kids, and don't want them to hurt.

[EB-80/8inPA 1,641]

On 12/13/2022 at 2:29 PM, sjoemie himself said:

Bit lost for words after reading this.

Reading that was hard going.  It’s inconceivable how hard this must be for the family.  I will pray for them.  Other than that and throwing a few dollars in the kitty, what else can one do?

[nylyon-(Admin) 7,273]

So very sorry your family is going through this. I have donated for Declan and continue to donate to any cause fighting against childhood cancer, and I pray for Declan and all innocent kids going through this.

[Pullstart 62,838]

48 minutes ago, EB-80/8inPA said:

what else can one do

Honestly?  I don’t know.  When we were there about 6 weeks ago, I was a human punching bag for the older 4 or 5 or 6 kids.  They were wrestling me, pillow fighting me, anything to get some morale back in the house.  The oldest two boys are really something else.  12 and 14 I think, and literally beat coyotes in the ribs with short pvc pipe pieces to get inside from the chicken coop making their flock safe at night.  We have a bunch of clothes and items to bring down and will be around the end of the year.  I sure hope that Declan is still somehow fighting then, and that we’re not heading down for a funeral.

 

For any donations, for any thoughts, for any prayers, thank you.  The Garnsey family thanks you.  

[953 nut 55,194]

Lord God,
     We feel so afraid when we think of Declon Garnsey’s journeying through cancer. Dear Lord, there is so much we do not understand about cancer. Lord, we ask for courage. Help us to be strong and courageous as we journey with the Garnsey family. Bring calm to this chaos. When we don’t know what to do, help us to remember that you promise to give wisdom to those who ask. We come to you now, asking for wisdom. Show us Holy Spirit, how to bring the calming and comforting presence of Christ to our loved one. Show us how to encourage moment by moment as we journey together. Help us to listen attentively as they process their feelings just as You bend down and listen to me.

Be with the medical staff that are tending to all Declon’s needs and guide them as they seek a miraculous cure. Father, may we be used by You to encourage the Garnsey’s. Fill us with renewed love as we journey this valley together.

We ask this in the name of Jesus Christ, Your son and our savior.

[Pullstart 62,838]

From Ashley: They are getting him comfortable.  I am going to be able to hold him soon.  Then he will be with Jesus. 

[Pullstart 62,838]

Baby Declan is with Jesus now, no more pain, no more suffering.  

[nylyon-(Admin) 7,273]

So very sorry, your family are in my thoughts and prayers

[SylvanLakeWH 25,535]

Godspeed...

[Horse Newbie 7,069]

I am sitting here reading, and balling my eyes out.

 

I am so heartbroken for little Declan and his family.

 

I know I should somehow be able to be happy, because Jesus conquered death on the cross… and for that I am joyful.

 

I feel so small , and so faithless that I cannot comprehend the magnitude of Gods love and his kingdom.

 

I feel like Jesus has Declan sitting on his knee right now.

[Snoopy11 5,714]

1 hour ago, Pullstart said:

Baby Declan is with Jesus now, no more pain, no more suffering.  

@Horse Newbie... life is but a vapor in the wind... we are like waves tossed in the ocean... like flowers quickly fading... here today and gone tomorrow.

 

This trial can become a testimony. Keep the faith, hold fast. Stories like this remind us what really matters.

 

Very hard right before Christmas... I've been there. We're here if you need anything Kevin.

 

Don

[Horse Newbie 7,069]

@Snoopy11

Exactly !… pain and suffering, and death is a part of life…

 

I know that Love is stronger than hate, 

light overtakes darkness, good ultimately triumphs over evil, and Jesus conquered death, on the Cross, for once and for all!

[Bill D 1,920]

 

9 hours ago, Pullstart said:

Baby Declan is with Jesus now, no more pain, no more suffering.  

  I know we've all been praying for a miracle, for healing, for recovery... and that is what happened, just not the way we hoped for.  He was healed.  Perfectly and completely.  Now and for eternity.  I've no doubt he's with Jesus now.  My prayers for you and your family at this difficult time.

 

Bill  

[sjoemie himself 3,068]

Very, very sad news Kevin @Pullstart.

I wish you and your family all the faith, hope and love you need in these difficult times.

Declan's suffering is over now but the pain of his absence will remain.

[rmaynard 15,436]

I don't know this child or his family and yet I'm sitting here with tears running down my cheeks. All the time and money that has been spent on trying to solve this mystery and cancer rates in children are still on the rise. Something is wrong with this picture.

 

My deepest condolences to the family. 

[Brockport Bill 1,661]

our tears are flowing  -- god bless to all -- special extra prayers tonight for Declan's journey -- from Bill and all his new friends from afar