We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Wednesday, May 09, 2007

Today Was Good

Well, another long day has come to a close. We again arrived at the Day Hospital first thing in the morning and Ellie was hooked up to fluids. We then went to Radiology for her 2 hour MIBG scan. John was with her during the scan while I stayed in the waiting room and talked with another family of a very small girl with Neuroblastoma. We then took Ellie back upstairs to the Day Hospital for her bone marrow biopsies.

The hardest part of our day was facing the procedure and recovery rooms for Ellie's bone marrows - they were the same ones a month ago where she crashed. It was almost surreal waiting on the exact same bench today for the procedure to be over. John was still wishing that he could be inside with her... He finally sat next to me and laid his head on my shoulder. I tried to convince him that she was asleep and his presence would not effect her one way or the other - and would most certainly be painful for him to watch, but the almost forlorn tone of his voice broke my heart when he said "she has to go through it, so why shouldn't I? I need to experience this with her." Yet another reason why I love him so very much. And then we walked into the recovery room where Ellie was waking up. The same bed was in the same place where I sang in her ear a month ago while she fought to live... but this time was different. Everything felt normal and safe this time, so the memories were pushed into the background and we focused on Ellie as she came out of the anesthesia. Oddly enough she woke up asking to have a kitten. She promised to feed it and take care of it if we would do litter box duty. Heaven help us all! We managed to deflect the issue - we can't even handle fish right now.

We found out yesterday that Nicole (the little girl I wrote about weeks ago) died a week ago Monday. We were told that her passing was peaceful, but our hearts still break for her family, particularly her parents, Kim and Joe. The mother I was talking with in the waiting room this morning and I both shared the same sentiment, and it's a difficult one to put into words for someone who has not experienced having a child with cancer... There is almost a small feeling of envy when we hear of another child's passing. It comes from the knowledge that their torture is finally over. I know this may sound harsh, but we constantly deal with the struggle in our emotions between desperately wanting our child to live and knowing that if she does, that this cancer will absolutely be hanging over her head for the rest of her life - even if she lives to be 100 - or that her life will be painful and difficult until she dies. The living with this fear for months, and for most people, years on end, becomes so wearing. And not only the fear, but the intense struggle for life - both in trying to beat the cancer but also to make it through the treatments alive.

Today has been a little bit long for me as I heard more stories of other children than I usually do in one day. We have been here long enough to get to know some other families, and we daily bump into someone we've already met and get an update on their child. Today we experienced this several times over and also met another three families. On top of that, I heard stories of at least 4 other children. Each and every story is different... one boy struggled for 9 years to find treatment that would work, only to finally find one and then die from an infection. Another young boy died after the less serious of his two tumors took over completely. Another young man just found out that he has relapsed after 13 years of being cancer free. Those three were all Neuroblastoma. There are some good stories, but recently there have been more bad than good. We did meet one little boy today who has finally cleared after 10 rounds of chemo and 2 rounds of the 3F8 monoclonal antibody. And so the stories go. The other difficult ones to hear are those who have come from other countries and have been living here at the RMD House for YEARS - without ever going home (those that we have met are from Australia, England and South Africa, and there is a new family from Bulgaria). Today was just one of those days filled with heavy information. Now everywhere I look there are not just faces of anxious parents and little bald children, but those faces have names and personalities. When I look up in waiting rooms, I make eye contact with someone who, if I haven't met directly, I have seen numerous times before or have even shared hospital rooms with. It is a very odd mix of comforting and emotionally draining. It is wonderful to look into the eyes of another parent and know without words that they understand, but it is also hard to take someone else's pain into my heart when I'm already overwhelmed with my own. Just the common ground of having children with cancer makes another family's pain very much our own - automatically.

All of the above thoughts and feelings naturally lead me back to the same place every time, even though working through them brings on a certain amount of melancholy (for lack of a better word). That place is two fold: the first is a strong feeling of thankfulness because in this place you will always find that no matter how bad you think things are, someone always has it worse. And then I end up feeling almost guilty for being so thankful - I would never wish someone else to have it worse. But through others' stories I am able to see in such vivid detail the many ways that God has provided for us and has met our every need. The second is where God inevitably brings my heart back to - not living in fear, and taking one day at a time. When I hear the stories and my stomach begins to clench, I remember afresh that I have experienced loss in my life and I am truly not afraid of death - not even Ellie's. I have already lived through the horrible pain of loss and discovered that God truly is enough - He's more than enough. My stomach begins to unclench and I look across the room at Ellie's sweet smile and hear her funny giggle and think "today is a good day". Once again, it comes back to that. Where are we at today? And if it's a bad day, it doesn't mean that tomorrow will be. Even the horrors of the ICU eventually ended and today Ellie smiles. It really is this simple: yesterday is past, tomorrow isn't here yet, and today is doable. And God is enough, more than that - He is good.

Just this evening John looked over at me in the small room where we now live and said "I'm so glad I have you. We could have no home and as long as we have each other we would be happy. I feel so blessed just to be HERE." And you know what - he's right. We love each other. We have one very much alive and happy little girl. We have an energetic little boy who's being well taken care of. We have amazing friends and family... we have all of you. Today is a VERY good day.


At 3:47 AM, Blogger tricia said...

ha ha ha ha, Sarah.....with a kitten....hahaha...cleaning a litter box..... HAHAHAHA!!!

So happy and thankful for your good day, love you.

At 5:53 AM, Anonymous Linda Buhl in North Texas said...

I didn't have a child with cancer - but a beloved spouse - and absolutely know what you mean about wanting them with you, yet knowing the pain they must endure. Knowing where we will meet them again made all the difference - but it still was wonderful to have those moments where it was US - bad old jokes and shared experiences that made our family. Praying for you all - and I think a kitty is a reasonable request - at least it wasn't a pony!(understanding that we live on acreage in Texas - so another cat here or there seems normal!)

At 6:24 AM, Anonymous Anonymous said...

We love you all so much.

At 7:17 AM, Anonymous Anonymous said...

thank you for sharing your heart once again with those beautuful words. you are in the right place.knowing that God is right by our side and will never leave us makes every day a good day!! you are a wonderful testimony. alwayse praying and in our hearts. God is Love !!! love simons family

At 8:07 AM, Anonymous Edith (Mema T) said...

I am so glad your home visit went so well and you had lots of time with your son. The video was joyful! We continue to pray in SC and know that God has been you and your families strength and refuge. To tell you what your updates mean to us is beyond words, your honesty and insight to the wonders of our Hevenly Father is awesome and sobering. To Ellie, you and your husband I speak blessing in the Name of Jesus, His strenght, mercy, and grace be in you. the angels that God has given charge over keep you from all harm. Be blessed in the peace that passeth all understanding as you all continue in this place. Be blessed so that you all may bless others. In Jesus Name- Amen- So be It.

At 10:45 AM, Anonymous kristen miller said...

Okay, that one needed a tear rating! Thank you so much for sharing this with us, Sarah; I love you all and can't tell you how much reading your entries is a source of comfort and strength. He is more than enough! Hoping today is another good day for ya'll, just for good measure :)

At 2:41 PM, Anonymous Anonymous said...

We continue to pray for your family and trust that God WILL provide. We are so thankful that Ellie is so strong - in many ways and are thankful to you for sharing your lives with us. Hope you are all healthy and together at home again soon. Hang in there Ellie!!!! The McBrooms

At 3:39 PM, Anonymous heather said...

Good to hear from you as always! We love you and continue to pray...heather and nick

At 3:52 PM, Anonymous Anonymous said...

So good to hear that today was a good day:) You are an awesome writer Sarah, maybe one day you will write and publish a book. You have a talent for bringing words to life. So glad all went well yesterday. Praying for you while you sleep:) Barb/PNG

At 7:48 PM, Anonymous Anonymous said...

John and Sarah, Oh how you have grown ever stronger in your walk with the Lord. You John the husband, the father, the Lion a man of God that watches with keen eye over his family, You Sarah the wife, the mother, who gets her strength from things of the Lord while leaning on her husband. The two of you together as a team held up by God protecting, fighting for, caring for Ellie. What an amazing testimony your lives bringing Glory to God.

At 9:35 AM, Anonymous Anonymous said...

John and Sarah,

My Jillian was miraculously healed. When they went in to remove the tumor it was ALL DEAD!! There was no sign of viable cancer!! Please read my blog for details that may help Ellie.
I continue to pray for you guys and now that things are quieting down here I will begin Ellie's blanket.


At 1:53 PM, Anonymous Anonymous said...

Thank you for sharing... Praying always, les

At 4:58 AM, Blogger oneofhisfriends said...

Thanks for this psalm.



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