Hi everyone. We have had a busy and difficult couple of days. I will tell you up front that this post is horrendously long - I have worked on it all day - and there is no tear drop rating that goes high enough... I am sorry for that, but you have now become so tightly woven into the fabric of our family that you feel our pain and our joys. I will never be able to thank you enough for choosing to be here with us.
On Monday John, Ellie and I went to Jacksonville to meet with a doctor about bone marrow transplant. We took in a lot of information and asked a lot of questions. We were given a tour of the hospital and oncology floor - Ellie had fun meeting nurses, child life experts and looking at rooms. It was all very overwhelming...
I am not able to explain it all right now, as we are still trying to sift through the information and figure out what to think. A brief summary would be that the bone marrow transplant makes everything Ellie has been through thus far - put together - look like a walk in the park. The bone marrow transplant is not a rescue for the chemo that Ellie will have gone through after 6 cycles (as we previously understood)...it is a rescue from the gigantic heavy-hitting mother of all chemo treatments they plan to do after the original 6 treatments. After the 100 days of recovery from the transplant, there would be radiation on the tumor sights (of which there are many). After that, other treatments…
Emotionally, we feel very similar to the way that we felt at the beginning when we found out about the cancer, also when we later learned of her prognosis. In some ways this is even worse. Early on it seemed that there were no decisions to make...we just did what we had to do. Now there are decisions, but it feels like choosing between bad and worse...but which one is bad and which one worse? Both John and I have struggled terribly these last couple of days - mostly just with the awful sadness of it all. Last night we both, independently from each other, cried the hardest, most gut wrenching tears of our lives.
We are so thankful that we don't have to know the end from the beginning - we know God and He has been so faithful already to lead and guide when we can't see what's on the other side. We know that He will continue to do that, and we trust Him for it, but it doesn't make the pain go away.
One of God's greatest provisions for us - that He put in place well before Ellie's cancer - was an incredible support network. I don't even want to try to imagine what this would be like without them. I know that everyone talks about support...how good it is, etc... but I'm talking about the kind of intense, sacrificial support the likes of which this world has never known! Our parents have put their lives on hold to care for our children and our many physical needs. (You know the sad baby I posted about the other day? I have often thought that if John and I were somehow unable to be with our baby in the hospital like that – you know, because we were in a coma in another hospital…the only reason for our not being there – then my mom would be there even if she had to walk… barefoot… across the entire U.S. And once she got there, she’d have to fight Gary, Stan and Pat to even hold the baby!) Our siblings have voluntarily kept themselves at a distance to protect Ellie from the normal childhood germs that their children may be exposed to, even while their hearts are breaking due to the lack of contact... all the while doing as many supportive and helpful things behind the scenes as they possibly can. Other family members and close friends have also had to keep a distance because we have limited Ellie's exposure to people - and we see this as a precious act of love on their part. We also have family who live far away, who constantly express the wish to be able to do more...but whose love supports us far more than they even know. John and I each have people that we have been able to lean on for spiritual and emotional support. Others have spent countless hours supporting all of our family members emotionally and spiritually... quietly praying and being there any time they are needed (even our support system has support!). John’s Uncle Fred built a bedroom on our house, and other friends and family have worked on our roof and house. So very many of you out there have sent money and gifts...and I'm mortified to say that I have not been able to send out thank-you's for any of it, despite the fact that we think of you all and are grateful every single day. And of course the hundreds of you out there who are reading this blog and praying and loving us so faithfully. Many times I have thought that if I didn't have you all, I would just curl up and not get out from under the covers most mornings.
And at the very heart and soul of this entire support network stand John's aunts: Loretta (who is supported in so many ways by her sister and brother-in-law, Reni and Mike), Kathy with her husband Michael (who not only supports her, but also us in invaluable ways), and Melanie with her husband Richard (who supports her and has "lent" her to us with such love). When Ellie was sick, before we knew that it was cancer, God had already set up this triangle of love and expertise. We already had deep love and respect for Loretta, Kathy and Melanie and so it was easy to lean on them and trust them in those early days when we were all trying to figure out what was going on with Ellie. There were phone calls to and from and between them (they each live in a different state) and countless hours spent pouring over health and nutrition, among other things.
Loretta lives in Montana and has many years of experience working with children on an emotional and psychological level as well as vast experiential knowledge of nutrition and medicine (not to mention an arsenal of experts to call upon). She also has an unbelievable ability to multitask and keep things organized - she's our record-keeper and choreographer. (We are often able to make one phone call - to her - and she is able to disperse and process the information with whomever needs to be involved.) Loretta is living with us...even though she's thousands of miles away. She is living our life - all day, everyday she fights side by side with us, stands with us, laughs with us and cries with us. Most of the time, I’m convinced that she knows us better than we know ourselves. And in Ellie’s own words…Aunt Lala makes her feel safe! She couldn’t have said it better, because that’s exactly how John and I feel too. Mike and Reni have given of their time and resources to keep Loretta and us going in ways most people will never see…but we know and we will never forget their love and generosity. During the hardest and most intense times, Reni has made it her mission to make sure that Loretta has food in front of her to eat! These are the things that amaze me. Not only has God given us more support than we could ever ask for, but he is also providing for those who have given their all to help us. I have worried sometimes that we would burn out everyone we hold dear, but those are the moments when I forget that God is the Well that never runs dry – and if we can trust Him to meet our needs, then surely he will provide for theirs!
Kathy lives in Florida and is a nurse practitioner. From day one she has given up her entire life to be at our beck and call. She went with us to the ER for that very first visit, and has continued to be there every step of the way. She was by our side when we heard the word “tumor” and later, “cancer”. Kathy knows how to read the lab results, what to look for, and what to ask for. Kathy is the one who changes the dressing on Ellie's Broviac every week...Ellie trusts no one more than Kathy to do this. It's Kathy who stays up at night in the hospital so that I can rest, and when she sleeps, it’s at the Ronald McDonald house so that she will be close when we need her. And Kathy was the one who held me when I cried for the first time in the hospital. Kathy is so sensitive – she can read me like a book, and now she has even been able to sense Ellie’s feelings before we can! We refer to Michael as our sentry...since the very first visit to the hospital; he would come and just sit outside the room waiting to get anything that we needed. He will often work from his laptop at the hospital - just waiting - especially on the days when I am there with Ellie by myself. Even when we don't need anything...Michael doesn't want me to be alone - and that is precious to me beyond measure.
Melanie lives in Connecticut and is a chemo certified nurse. Imagine that! Not only has Melanie helped us understand things every step along the way, she flew down and stayed in the Ronald McDonald House for 2 weeks when Ellie first started chemo. She explained what things meant, took notes, and gave us pointers on how to care for Ellie and calm her down. And while her knowledge and help in the whole process has been priceless, the thing that touches my heart the most is her understanding. Melanie understands what I feel - she has spent uncountable hours in hospitals with her own daughters - not one, but TWO daughters...Melanie just knows. As if that isn’t enough, Melanie also has another gift that she brings to the table – she understands who I am personally…not just because she’s been in my shoes, but because she looks and listens…and gets me. Richard has sacrificially given to us by sharing Melanie with us – there are daily phone calls at all hours of the day and night, not to mention her trip to Florida. His support and understanding - in things no one else will ever know about to applaud - are not missed or unappreciated by us!
I have wanted to share these things with you all for a long time, but as you can see, it takes a lot of explaining. But now the time is right. I wanted to describe this wonderful circle that we have. The five of us…John, me, Loretta, Kathy and Melanie have linked arms and have encircled Ellie. This circle is not exclusive in a negative sense…it does not keep everyone else at a distance, and diminish their love and gifts and support. What it does is provide a solid base for meeting the physical, emotional, mental and spiritual needs of Ellie during this time. It allows the rest of the support network to flow and function smoothly and with great effectiveness. This is not a job that John and I are capable of doing on our own. As parents we want to think that we have what it takes to be enough for our children. At this time in Ellie’s life, we are not enough. Make no mistake though - John and I are ultimately in charge. This is a responsibility that we take seriously and heavily. We are the ones who make ALL decisions pertaining to Ellie, but it is never without the loving input and research of the other three. When it comes to final decision-making, we all differ to John. And when it comes to the intuitive knowledge of what Ellie needs, all differ to me. The beautiful thing that is happening is that the five of us are beginning to meld together in many ways. We finish each other’s sentences and are functioning less like five separate individuals and more like one fluid circle. I would want nothing less for my child…and nothing more!
At the very center of this circle is a precious, sensitive and complicated little girl. Our Ellie never ceases to amaze me. I wanted so badly to get Ellie down early last night. I haven’t had more than 5 minutes at one time to talk with John since our trip to Jacksonville, but as it turns out, my plans were not to be. Last night I went through something that no mother should ever have to live through, and yet I will treasure it for the rest of my life. When I went to tuck Ellie in, she started crying. I held her in my arms while she sobbed, and when she could finally speak she told me that she was sad that Steve Irwin (the Crocodile Hunter) had died. She was crying for his daughter, Bindi. My heart began to break as I watched her grapple with the grief of family who are left behind when someone dies. I tried to comfort her by explaining how badly I missed my dad, but that I know that I will see him again someday in Heaven. Her crying turned into a wail at that point and she said “but I don’t know if Steve will be in Heaven!” I realized that then she was feeling the worst kind of grief. When she was a little calmer, Ellie asked if we could call Loretta, and so La helped her to understand that she could leave Steve’s heart to God…that only He truly knows where another person’s heart is at…and so Ellie began to rest. When we hung up the phone, Ellie asked if I would sing to her, so we snuggled as I sang “He giveth more grace, when the burdens grow greater…” When I was finished, she started asking questions about Heaven. We talked about all of the things that people speculate about…her cousin Megan thinks that maybe we will get to wear beautiful white dresses, and Ellie said that she would like that, as long as it doesn’t itch! I assured her that there was no pain in Heaven, so it would be the most comfortable thing she could possibly imagine. Ellie would like to have her ears pierced in Heaven because it won’t hurt, then. She had heard somewhere that we get “prizes” for good things that you do on Earth, and I had the privilege of explaining that our lives get kind of summed up and all of the things that we did for God’s glory and pleasure become precious jewels that we can lay at Jesus’ feet as the gift of our lives. She smiled in pleasure about the beautiful streets of gold and gates of pearls. And then she said “Mom, if I go to Heaven before you, will I be sad?” I wanted to cry as I held her close and said “No! You will be so very happy in Heaven. You will get to finally meet my daddy, and you will never feel any sadness or pain!” to which she interjected “no throwing up!” I assured her that if she is able to look down at us from Heaven and see that we were sad because we missed her, that even then she would not be sad because she would know that we would join her some day. My sweet, sweet girl then looked at me and said “When I die, I hope that it is quick. And I hope I can die in my sleep.” I had not been emotional up to this point, so I was able to brightly say “you know, I agree! I think that would be the best way to go – that’s what I would want too.” Ellie was almost glowing with peace and a radiant kind of joy when she propped her self up on an elbow and said “Mom, would you pray right now and ask God to let me die in my sleep?” And so we lay together, face to face while I prayed as my tears fell unchecked on her pillow. I thanked God for bringing Ellie into our lives, and I thanked Him for knowing all about Ellie’s cancer and for knowing the exact number of days that she would live. When my voice broke too much to go on, Ellie sat up and got me a tissue, then lay back down while I continued. I then asked God to please honor Ellie’s request, that when the time comes, He would please let her die in her sleep. I was overcome with my tears at that point, so Ellie again popped up and said “would you like me to finish?” and she said “and Mommy wants that too! Amen.” I snuggled Ellie close while she fell asleep and my tears continued to fall. When I finally made it out of Ellie’s bed and into the bathroom, I cried like I have never done in my entire life.
This morning, after John was out of bed, Ethan woke up and snuggled with me in bed while he drank some juice. We were all warm and toasty, enjoying the moment when he said “Mom, what happens when we die?” Good grief! Can’t a girl ever get a break? I explained things to Ethan on his level, and I asked if he was worried that Ellie would die and he said “yes”. I told him that if she dies, we would see her again in Heaven someday and that she would be very happy there. And I also assured him that right now the doctors were trying very hard to help her get well. He happily got up and began the day…while I flopped back down under the covers for a while!
John took Ellie in to the clinic for lab work this morning, and later back in for a platelet transfusion. They are still there. Ethan has been enjoying the day home with me…earlier I snuggled him to sleep while listening to a Twila Paris lullaby CD…while I cried into his pillow. This time it was a gentle, aching, peaceful kind of cry. He is still sleeping while I am typing. The day is nearly over, and I have literally been typing ALL day. The best way to describe today is…peaceful. It is overcast and drizzly, as if even God Himself is crying softly for us…and yet He holds us all the while in His arms. Now I know how my children feel when they are crying in my arms…and maybe even a tiny bit how God feels as He cries with us and for us while He holds us.