Another birthday, another hope, another wish …

On my birthday last year I spent the day at the hospital with Declan.   My wish and my prayers that day were clear, I begged God to grant a miracle and heal Declan.  I remember not wanting to leave the hospital that day.  I watched Stan & Sherri holding their baby, weary but afraid to sleep wanting to spend every last second holding Declan.  We lost Declan 2 days later, my faith was shaken to the core and the pain and the emotions remain raw. 

This year I have another hope, another wish.  I’ve looked at the list of angels that have been added to the heavens since this time last year.  The statistics say an additional 20,000 kids have been diagnosed with pediatric cancer and 8,760 have died.  In the grand scheme of statistics these numbers are small, but if you have a child with cancer or if you have lost a child with cancer statistics are not part of the picture.  The point here is that society hasn’t chosen to put dollars into research to find cures for the small number of children and families impacted.  We must change this picture.  We must find cures and we must do it now.  We were just like most other people, we assumed that there were treatments that sufficient funding was going to research.  When Declan was diagnosed the ugly world of pediatric cancer was revealed, so now we journey to save other kids to give them hope with treatments and cures.

So my birthday wish today, my hope is that we can somehow garner the support, get the votes to honor Declan, Charlotte, Nathan, Hailey, and the many other angels.  To get the votes to win research dollars to support the research of Dr. Michael Jensen.  He has a vision of creating a world without childhood cancer.  It is amazing to me that American Idol can get millions of votes in one night and we can’t get a couple hundred thousand in two months — what’s up with that???

Please help.  Please vote today and through August 27th.  Please spread the word and get others to vote.  We continue to hope, to journey, to have faith!  http://vote4acure.com

 

Declan Forever

 

Yesterday we braved the heat and took six of the grandkids to a long promised visit to King’s Dominion — boy was it hot!! My sweet daughter-in-law Cathie volunteered to accompany me and went on many rides with the kids.  We decided to wear our Declan shirts for a variety of reasons, but mostly because Declan is never far from our hearts, minds and prayers.   I spent a good portion of the day while the kids were having fun ???? whirling, twirling and riding upside down, watching people and thinking about Declan.   I was asked a couple of times about our shirts and explained a little to a couple of people.   But mostly I explained that Declan lost his brave battle with cancer but our plan was to continue his fight and focus on pediatric cancer in memory of Declan.   As Sherri noted last week the amount of funding associated with pediatric cancer is appalling.   There are so many thoughts churning in our minds right now, amidst all the raw emotions of the past weeks — one thing I do know is that we have a passion for increasing awareness, helping families and changing the picture of funding for cancer research.   We pray research will lead to more knowledge about cures for the horrible disease of AT/RT.

People have given us strength over the past week.   The hundreds and hundreds that attended the viewing and funeral mass provided so much support.   The balloon release that started as an idea strand by a couple of wonderful people on Facebook turned into another amazing event that helped us maneuver a tough day.   The cards, messages, offers for support — I continue to be blown away by the number of people that were touched by Declan in his short life. Declan’s sweet smile fills my heart each day.   We hope you will continue to follow Declan’s Journey as our fight/plan of attack evolves!  

I’ll title this post with the salutation of one friend and add a poem sent by another, thanks to all :)

 

In life we loved you dearly,

in death we do the same.

It broke our hearts to lose you,

Your memories and love remain.

Though we cannot see you,

you are always at our side.

Our family chain is broken,

and nothing seems the same,

But as God calls us one by one,

the chain will link again.

So, where to from here?

We are blessed, I know that — we have amazing friends, neighbors and a wonderful family — beginning with our siblings and their families, aunts, uncles, nieces, nephews, cousins to my four beautiful children — Beth&Sam, Stan&Sherri, Danny& Cathie, Jenny&Mike and the blessing of our 13 grandchildren — Kaylob, Sammy, Will, Lucas, Hunter, Devan, Cailyn, Kane, Drew, Molly, Brady, Declan and Cole.

We are blessed to have been part of this past year with Declan. We moved back from NM and bought a house in VA only a few short weeks before the twins were born. Stan and Sherri graciously opened their home to us while we waited for our house to be delivered. Although they were happy for the help in those first months after Declan and Cole were born (not sure they wanted all the advice that came with the help :) — the gift of those months was to us and not to them.  The memories of this past year will be with me forever — the joys of holding and caring for Declan and Cole from the very beginning.   So many memories –coming home from work to those joyful babies, helping with those middle of the night feedings — the groggy laughs Judy and I shared with Stan and Sherri at 2AM, watching all the boys — Will, Brady, Declan and Cole grow and change, their tolerance of my many songs, Declan‘s first belly laugh, his smiles, he was so full of smiles and laughter. How do I keep those good times, smiles and memories close to my heart without all the sadness that goes with them? God has a plan I tell myself. 

We are blessed to have had some very joyful days over the past 5 months since Declan was diagnosed. With all the lows, there were the highs — Declan’s good days — his smiles, how Will could make him laugh just by saying his name (and we all tried to imitate Will and get that same laugh from saying “Da, Da, Da, Declan“).  Declan’s joy when all the boys were visiting — his interaction with Brady and his pensive looks at Cole when he would chatter away. The memory of seeing Declan in Houston listening in amazement to him squeezing his giraffe Sophie — he was so proud of himself when he could make her squeak using both hands. How cute it was when Declan would light up when a female walked in the room, he flirted with all of them — his eyes and smile would light the room. Our daughter Beth, our research specialist, was beside herself when she was told it was AT/RT but I knew it would be okay — I had faith it would be okay.  How do we maintain our faith and our determination to help other families dealing with this horrible disease? God has a plan I tell myself.

We are blessed, to have had Declan’s story touch so many people and to have received the most amazing support from so many — friends, neighbors, family and strangers. Even today, the deeds, messages, prayers, songs that uplift us when we are in this abyss of misery — that support has been the mortar that has kept us from falling apart on so many days and continues to uplift us now. One said that you could see the beauty of God’s face in Declan’s eyes — those beautiful eyes. How we insure that these people know how much their support and meant and pay it forward? God has a plan I tell myself. We are blessed by Sherri and Stan, watching them weather this storm with amazing grace and fortitude despite the torture of their hearts. Watching them with determination gracefully demand and be the best possible advocates for their child in the worst of circumstances — what they learned about AT/RT and everything that comes with it was mind-boggling. My heart aches for Sherri, Stan, Will, Brady & Cole. How do we help them heal and navigate this quaqmire of emotions now and in the weeks, months, years to come? God has a plan I tell myself.

So where to for now, I think we are blessed to have had Declan for even so short a time.   Declan was premature so I know that it would have been easy to have lost him then and never have had that all to short a time with him.  So for now I tell myself that we will have to hang onto that — the fact that even though his time was short, the gift of Declan was huge. Hang on to the blessings we have, the memories, the gift of Declan’s goodness and smiles, the gift of our family and the tremendous support by so many people. Hang on to the positives in this journey. I know Sherri will have much more to say — there is so much more for her to say and I think that is part of God’s plan that will help us heal.

Matthew 5:4 Blessed are those who mourn, for they will be comforted.

What’s in a name???

Declan, just for clarity pronounced — DECK-lan with emphasis on the first syllable. 

I think I blogged about the name Declan before but started thinking about it again last night after watching the amazing slideshow.  (I so miss Declan, Cole, Brady & Sherri and it’s only been 2 weeks since I’ve seen them — yikes the end of July seems ages away.) 

Anywho as Sherri would say, I  love the name Declan, have always loved it, remembering a Sister Declan from school and briefly studying about the Irish Saint named Declan.  Saint Declan’s feast day is July 24, a  few days after Declan’s last proton radiation treatment (special prayers for our Declan on that day).   Saint Declan was a famous 5th century missionary and great orator who is said to have built Ireland’s first Christian settlement.  The name Declan is derived from Irish words “dag” good and “lan” full (I can hear my Granny’s rendition of the Irish brogue here)  – suggesting the meaning full of goodness and also suggesting man of prayer.  How amazing is this??

Our sweet Declan has the most beautiful blue eyes.  When you walk into the room and you see his eyes and he sees you, he has an ability for his eyes to speak to you — something always catches in my heart when I see that beautiful smile.    His smile is extraordinary, and I’m not saying that because I’m a biased Nana either :)     I remember his first smiles.  To me, it always seems miraculous when a baby starts smiling at you — how could that tiny little thing know the amount of joy that those smiles bring.   Declan also has the most amazing laugh!  I remember standing over him on the changing table and his infectious laugh would bring so much joy — my heart aches for those carefree laughs again and I have hope that we will see those days again.  

We have been blessed by so many over the past few months.  As I have said before the outpourings of love, support and prayer have helped us make our way through this quagmire of emotions.   The blessings have been many.  A few weeks ago when I was in Albuquerque a friend invited me to visit her mother — what a special blessing this was, her mother asked us to pray with her for Declan.  She said she had a special feeling that Declan was going to get through this and be warrior for God.   I pray the litany she taught me for Declan every day now.   On the most challenging days we have been blessed by so many, receiving a visit, message, card or special prayer for Declan – these things always seem to arrive when we need it most.  As Sherri said a sign — these blessings continue to provide hope!    Ironically, that was the theme chosen for the web page in the beginning and is on the bracelets – love and hope for Declan.   

So, what’s in a name — goodness that comes from Declan himself, love from those amazing eyes and that beautiful smile and hope that God will bring Declan through this journey.  As I sit here tonight, far from my family, reeling from my own thoughts and the beautiful slide show pictures, I ache for them and for Declan’s healing.  For now I take Declan’s name as a sign by itself, and I pray and take comfort in scripture that hope abounds! 

Rejoice in hope, be patient in tribulation, be constant in prayer.  —Romans 12:12   May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.  —Romans 15:13

We thank you for the blessing of your constant support and prayer!

 

A little news from Nana

I know people are wondering so here is the latest scoop while Sherri and Stan are trying to keep up with some other things….I’m currently in ABQ with no computer so my posting ability is limited :)

Declan tolerated the proton radiation therapy well on Thursday and Friday and for those that don’t have Facebook there is a nice smiling picture of our amazing Declan after he came through the first treatment on Friday.  Mom and Dad as well as the rest of us were a bundle of nerves and we were all happy to see him smiling —- I do believe that Declan is aware of our stress and is always trying to make us feel better and he does a good job of that.

The not so good news is that Stan & Sherri had to make a trip to the emergency room with Declan on Thursday night, again he was dehydrated and was admitted to the hospital.  So that’s where they are now.  Declan is getting all his counts back up now and is doing well but his needs as well as the other boys are keeping mom and dad pretty well occupied.  I’m always happy when Sherri can get a break and post her wonderful stories about how things are going, mine are cryptic and factual so stay tuned for the rest of the story!!!! 

As I said so many times, thanks for all the prayers, we know this is making a difference and trust that God has our Declan in the palm of his hand!  Please keep praying!  Love to you all from Nana!!!

Quick update —

Will and I left Houston and are back in Virginia now for Will’s last 2 weeks of school.  We went out to dinner last night with Granny (my mom), Rosemary & Leon and Will was very entertaining.  He loves seeing his Granny and gave her lots of hugs.  All in all he has been an angel for the past few days, should be an easy couple of weeks if he keeps it up!

A quick update on Declan — Sherri will provide more details as she gets some free time …

Declan looked good when I was in Houston.  He was in the hospital for his chemo treatment that ended Sunday.  I know that he has been sick a little from his chemo over the last couple of days and that takes up lots of time and energy, watching him every minute to help him sit-up and get it out and calming him afterwards.  Sherri is marvelously calm during these bouts and helps Declan deal with it (not trying to curry any favors here but she is truly amazing at dealing with this stuff).   Declan had another MRI on Monday and she spent much of the day holding him, he couldn’t eat before the MRI and it was late in the day before he had the test.  They wanted to evaluate the shunt adjustment and I believe the MRI results showed that it didn’t change anything — so please let’s pray for that!   Declan was discharged late yesterday so last evening was getting him settled back into the hotel which keeps Sherri very busy.  Tomorrow they are scheduled for the first treatment at the proton center.  As always, Declan continues to amaze us with his smiles and good humor, amazing like his mom!!!

Positive news this week on the tumors, please continue your prayers, I know they are working.  Words are insufficient to convey our thanks for the love, support and prayers — it makes a huge difference!!!

Prayers for Declan, and taking off for Houston at noon!

I know Sherri and Stan will probably blog when they get to Houston but wanted to let folks know they took off safely.  I feel there was a special message in the timing of the take off — as they took off, my alarm went off to remind me to pray for Declan at noon!  We feel blessed that so many people are praying for Declan at noon each day — please continue, its part of the miracle!  I pray that the flight goes well, that the Marriott in Houston has accommodations that work for this big family and that MD Anderson provides more positive steps in this miracle for Declan.   We continue to thank you for your support!   

Declan was all smiles at the airport today and happy to see his brothers!

Brady was pensively considering the big trip while brother Cole was taking it in stride!

Declan had a good day yesterday, lots of smiles and talking to Grandpa was fun too!

A good day

Stan and I have been sick and not able to visit Declan, and it’s been tough not seeing him regularly.   So today I’m well and I got to see Declan!  Brady and I went to the hospital this morning.  Brady brought Declan a bear and Declan loved it!  

Brady was thrilled to have some fun time with Mommy while I got to play with Declan.  He was mostly smiling today, but the episodic bouts of discomfort are still coming and it’s tough to watch.  Declan also got sick once while I was there and that’s tough to watch as well, but somehow he always bounces right back and starts cooing  and smiling again. 

Mom gave me a tutorial on how to manuver the IV pole and the stroller and I took him on a stroller ride through the halls and even went out in the courtyard for a little while when Mommy and Brady were in the playroom (Brady loves that playroom – I gotta check it out for some hints for Nana’s house).  When we got back to the room I got to hold and rock Declan before the occupational therapist came in to put him to work with his exercises.  He is doing so much better at holding up his head and reaching for toys.  It’s good to see him making progress in spite of everything. 

Another wonderful mom came in with her little boy to talk about the hospital in Houston, she had so many wonderful things to say about the people, the facility and the atmosphere of hope there.  It felt so good to hear these positive messages!  Thanks Susie and John for the visit today.  So, today was a good day — also Declan and Cole’s 9month birthday, hard to believe!  It’s also Aunt Kay’s birthday, Happy Birthday Aunt Kay! 

Declan is still a very sick little boy and I ask that you all continue to pray with us.    I know that through prayer all things are possible – (James 5:14) Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much.   I believe that prayer will bring the miracle and I thank all of you for your continued prayers and support.

As the Easter Season ends, please pray —

The Easter season ends on Sunday, May 23rd with the feast of Pentecost.  Our prayers for an Easter miracle have been answered in some ways, the first phase of chemo is coming to an end and shortly after Pentecost Declan, Stan & Sherri will be heading to Houston for the proton radiation treatment.  We thank the Lord for the progress Declan has made thus far and continue to ask God for a healing.  As the Easter season comes to an end I ask that Declan’s many supporters energize their prayers this last week of the Easter season and consider scripture —

“I tell you that if two of you on Earth agree about anything you ask for, it will be done for you by my Father in heaven.  For where two or three come together in my name, there am I with them.”  Matthew 18:19 

We thank you for your continued support and prayer!

Happy Mother’s Day!

A Mother’s love is something that no one can explain, her love is deep devotion as well as sacrifice and pain.  A Mother’s love is endless and enduring whatever comes her way, nothing can destroy it or take her love away.  A Mother’s love is patient and determined — not forsaking, and it never fails or falters even though her heart is breaking.  A Mother’s love belives when they say there is no hope, she steps up to the battle and does more than just cope.   A Mother’s love and commitment defy all explanations, her strength is unparralled and exceeds all expectations.  A Mother’s love is a miracle that makes the world seem sane, and proves that God is guiding us when our faith seems on the wane.

Thank you Sherri for your love and devotion to your family but most especially for you tender care of Declan.  We love you.  Happy Mother’s Day!