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.

Tuesday, January 30, 2007


Hi everyone! Thanks so much for the great comments about the hair (or lack of hair) pictures. It was nice to have something fun to post for a change. I read many of the comments to Ellie to encourage her in her new look...she was so pleased. She really does seem comfortable and secure in it. Your encouragement has helped!

Planned order of coming events:
Thursday - clinic appointment to check blood
Friday - bone marrow biopsies; possible hearing test
Possibly Friday - stay in the hospital to start round 5 of chemo

For now the race is on for Ellie to gain as much weight as possible. (After the next round of chemo she may have stem cell harvest as well as surgery to remove the adrenal gland w/tumor, so she may lose more weight next time than usual.) Her weight as of tonight was 48 pounds! We are happy about that, but she has a goal of making 50 pounds before chemo. We are so proud of how she's been eating these days, and it helps for her to have a goal to work towards.

Thanks so much for praying. I'll let you know how the rest of the week goes. Hope you all have a good day!

Monday, January 29, 2007

Bald is Beautiful!

Sorry for the lapse in posting. We've been working on our house almost non-stop for days. Our bed is finally out of the living room - SO glad about that! Now I am going through the piles of stuff in the laundry room. That room will be the next project...since Ellie got our room, and our new bedroom was built, our clothes have been in Ethan's room in rolling clothing racks. Our new room doesn't have a closet, so we plan to make the laundry room into one family closet - complete with washer and dryer. I'm thrilled about this idea...it should make laundry even easier!

As for more important news...Ellie has been gradually working up the nerve to let go of the last clinging strands of hair. It was a tough decision for her, but once her mind was made up, she wouldn't rest until I cut it all off. I absolutely LOVE it! She looks so adorable. Ellie has had moments of bubbling joy interspersed with tears of grief when she looks at the different face in the mirror. It is all part of the process...somehow this makes it so much more REAL. The morning after I cut it, I used a beard trimmer to clean up my quick scissor cutting job. Ethan watched the whole thing in fascination, and kept saying "I want to do that too!" I ignored him because he's four...and two minutes later he was likely to change his mind. (Ethan didn't know yet that John was planning to go to the barber shop to shave his head - John told Ellie that he would when she first learned of her cancer.) Finally Ethan got my attention. He said "Mom! Do you know why I want to do that too? Because I love Ellie!" When I told him that his daddy was planning to go bald too and asked if he really did want to do it, he said "yes!" and never looked back.

That afternoon we all trooped into the barbershop - camera in hand. (Ellie in a mask and hat.) Ellie kept her hat on until John and Ethan were finished. She shyly took her hat off, then basking in the glory of having her own "tribe" who looked just like her, she walked out into the sunshine for all to see. In the days since, I've seen her grow more confidant with her new look and now she doesn't seem to feel different at all. And in case you're wondering...I had about five minutes of serious consideration on whether to shave mine too...but I chickened out. I had never planned on doing it, but seeing the rest of my family all together supporting Ellie gave me pause...and then I snapped out of it. We have already established on this blog how my hair adds to my sanity, and I just can't afford to loose my sanity right now!

John in phase 1 of the process...this picture is on at Ellie's request!

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The three muskateers:

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Two peas in a pod:

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My sweeties:

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Fun in the swing:

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Daddy and his little ones:

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Friday, January 26, 2007

And Joy Comes in the Morning

Thank you all for your sweet responses to the last post...I know it was heavy. I am happy to report that we have come through several days of sadness and confusion into a place of peace and rest. We have been in touch with the father of another girl with Neuroblastoma, and his words of encouragement are still ringing in our ears. His advice was the same as what God Himself has impressed upon our hearts many other times, and that is to take each day as it comes, pray, and wait for the leading of the Lord in that moment. This father's exact words were that it is a "gradual unfolding of His will..." and this struck such a cord with us because that is already how God has been working. We don't need to know the answers ahead of time...just stay close to the side of God and wait for His unfolding. This morning we awoke without the elephant sitting on our chests...and today there was joy! We are so thankful for the words of this kind stranger who was somehow not a stranger at all...he has been there, and is still there in the trenches along with us. Thank you all for your concern and for going down the valleys with us...and up the mountains.

Tuesday, January 23, 2007

Tears from Heaven

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.

Sunday, January 21, 2007

Our Life

We have had a good day home. Ethan had been staying at Mom and Gary's house during this trip to the hospital, so they let him stay over last night too, which enabled us to sleep in this morning!! It was wonderful. I got absolutely nothing done today, which was fine since it will take more than a day to get the house back under control again. I take that back...I got a shower...that counts, right? John had to work a little today, and Ellie was at Stan and Pat's (there was a better chance of her eating well there today, since I'm not sure when I last went grocery shopping) so I decided to risk leaving Ethan unsupervised in the house while I showered. Given the state of things in the house, there was really not that much damage that he could do. I was right...the house fared just fine, but I wish I could say the same for Buzz Lightyear - I found him in the toilet when I got out. Isn't that what happens to all toys when they misbehave? I figure that's better than finding Ethan in the toilet, which has happend before...but that's another story...

We had to make a trip to a store this evening, so we decided to take Ethan along and get some dinner out. Things have been crazy lately and it's not often that Ethan gets good time with both John and me at the same time. It was so neat to watch John and Ethan together! At the gas station, Ethan had to get out and pump gas with his dad, and I could hear John explaining to him where to stand and what to do, and why...John gives very detailed explanations. When we got to the store, just walking in holding each of our hands made Ethan giggle with happiness. Once inside, he rode in the cart, chattering all the while. Next we went to the restaurant. Ordinarily we are wary of eating out with Ethan because it's like trying to eat while being stuck in a washing machine that's set on spin! Tonight was no exception to the rule, but several moments made it so very worth it. As we were waiting to be seated, John was holding Ethan in one arm and I was leaning against his other elbow. Ethan reached over and put an arm around my neck, with his other arm still around John and pulled us together with his little head in between and said "I love our family!" Once seated, he kept saying "I'm so glad I'm home" over and over in a sing-song voice. My heart was full watching the two of them with their matching buzz haircuts go through the salad bar. When they came back to the table, Ethan hugged his daddy's arm and said "You're my friend Daddy...are you my friend?" John said "I sure am, Buddy" and Ethan replied "I will be your friend for ever and ever!" It was enough to fill my heart to the very top...despite the fact that by the end of the meal I was exhausted and dizzy from being caught in the spin cycle too long.

And this is the realization that hits me tonight. This is our life. There are times of pain and fear... medicine to take... time spent away from each other... mundane chores... never being caught up - on anything... tears... laughter...an 8 year old who makes wise statements and logical choices... and foolish ones... a son who falls apart over nothing... but says "I love our family"... Buzz Lightyear in the toilet... hospital visits... a fresh breeze on the face... no sleep... falling asleep in the big bed all together... a daddy who works long hours, but snuggles you to sleep. Our life is not perfect, nor is it easy - but it has texture. Our highs are as big as our lows, and combined with all of the silly and crazy things in between it forms the tapestry that is our life. I think that our tapestry is incredible - the colors and textures are vivid and strong, and it is...OURS.

Saturday, January 20, 2007

Going Home...Again

We should be out of here tonight...as long as there is no more fever! The blood cultures never showed any bacteria growth and today she received her second round of blood transfusions this hosptial stay. The first round brought her counts up to low, so now this round should bring them up to acceptable. The blood transfusion is only half done and she's humming and making animal noises and giggling. Mom is doing her best to keep Ellie semi-contained... and that's no small feat! It's amazing what red blood cells do for a body.

I got to have an adventure today! Since Mom was here taking care of Ellie, I decided to go downstairs for some coffee. This morning I actually went downstairs for my morning coffee while Ellie was still sleeping (since this trip to the hospital was unexpected, I didn't bring the normal gear...including coffee pot) and it was the first time I'd been off this floor in three days. Heady with such a taste of freedom, I decided to do it again. Before I even got downstairs, I decided to really live it up and go across the street to another hospital. The weather has turned beatifully cool (it always seems to do that when I'm holed up in the hospital) so the air on my face felt wonderful!

There are many contrasts between the two hospitals that always hit me whenever I make the trek. Our hospital is older and is in the process of being renovated. The renovation is going from bottom to top...and as we are near the top, the renovation has not reached us yet. So...I go out the door and into the hall. If I see anyone other than nurses, they are children in varying stages of baldness whose parents have sad, tired, and somewhat resigned eyes. Out the double doors and into the side of the floor designated for overflow from other floors. For days there has been a tiny newborn baby in a room with the door open and never EVER any parents or family to be seen...then a baby in another room with 2 or 3 people ALWAYS there...most of the faces in the hall are anxious and full of questions and concerns. Some of the doors have boxes with masks and gowns in them because there is a communicable illness inside...I try to hold my breath and walk faster. I will occasionally see someone from our side of the floor walking by to the kitchen in slippers...like they've done it a hundred times...like they are at home. I finally make it to the elevators and feel a little bit of pressure lift off my shoulders. When the elevator makes it to the bottom floor I get off into a place that looks a little bit like Disney....there's a castle and Disney characters sprinkled around the lobby...of course there's the obligatory gift shop. Everything looks so cheerful and bright. I go out the door and down the sidewalk. I never get tired of looking at the hospital across the street - the architecture is gorgeous. It is a hospital for women and babies. This is a busy place...cars coming and going...valet parking. There are women in varying stages of pregnancy coming and going with husbands, mothers or friends in tow. Almost every time I go there, there's a woman being wheeled out to the waiting car holding a tiny baby...someone's video taping...there's the careful process of getting the baby into a car seat for the first time...family and friends talking, laughing...happy. This always makes me feel a little sad and wistful...it's such a stark contrast from where I just came from. You enter the building through a glass enclosed waterfall and go into a light airy building. The cafe is wonderful...beautiful with a large variety of choices.

Today I bought a piece of cheesecake and some Starbuck's coffee and went to sit in my favorite part of the building. It looks like you're sitting inside a glass ball full of furniture and trees. You can see the world outside, but it's a toss-up as to which is more interesting...the outside world or the beautiful structure. I savored my cheesecake and coffee until the fire alarm started going off. Poof! My beatiful moment evaporated...into one that was much more interesting! A voice over the loud speaker started saying "An emergency has been reported...please calmly find your way to the nearest stairwell or exit..." Everyone around me looked confused and started wandering around trying to figure out what to do. I was very close to the exit, so after explaining to several people nearby what the voice on the loudspeaker was saying...I went out. Afterall, I didn't want to get trampled once everyone else in the building decided that they needed to get out. I needen't have worried about getting trampled...nobody else came out those doors! Some people were going IN! So much for all of the excitement...I calmly walked back across the street to my hospital and ordered something for Ellie to eat. While it was being made, I went over to where I could see the other building - the fire alarms were still flashing - I could see it through the big glass ball, but there were no anxious people milling around outside...nobody scurrying around...no pregnant women being brought out on gourneys...no fire trucks with lights and sirens. I did see one lone security vehicle parked out front. Sheesh - it was all so very anti-climactic. So I sat down and enjoyed the breeze on my face and was happy for all of the women in labor who didn't have to be told to "hold on a minute while we wheel you out...oops, can't take the elevators...you'll have to go down the stairs..."

Well, my nice outside moment was over (I'm not an outdoorsy kind of girl, so that about did me for the next week) and I got Ellie's food. Back through mini-Disney...back up the elevator...past the baby with anxious family...past sad lonely baby...through the double doors...past little bald girl in a bandanna...and into my home away from home. And that was my adventure...I know, sad...but I totally enjoyed it!

The nurse just came in and unhooked Ellie from her transfusion and handed me discharge papers. Wow! I've got to start packing!! I must go - I'll write more from home...

Friday, January 19, 2007

Highlights of the Day

Today has been a good day. Ellie has felt pretty well, but she still doesn't have much of an appetite. So far the blood cultures aren't showing any bacteria growth, so we may be able to go home this weekend. She may be getting another blood transfusion tomorrow. Ellie's friend Alexandria had her 8th birthday party today, so we joined via web-cam. The party theme was Lilo and Stitch, so we got some hawaiian decorations and sprinkled them around the room...there are paper lanterns, a beach towel on the wall, and Ellie dressed up for the occaision!

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My little Hawaiian beauty:

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This one needs no explanation...in fact, I don't think there is an explanation!

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Ellie turned the camera around on us. (Don't be alarmed by the look of her lips - they are a little chapped, and then they got stained by an orange popsicle...)

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Ellie is beating Mom at Uno:

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I'd say it's been a pretty good day! Love to all...

Thursday, January 18, 2007

Reflections on the Day

It is almost midnight and all is well. Mom came for the day and played card games with Ellie - it was a nice low-key way to spend the day. Even with the transfusions, Ellie's energy was very low, so she even napped a little towards evening. I was able to get a THREE hour nap...pure heaven...so I'm actually vertical and somewhat coherant tonight. The magic will likely wear off soon and I will fall into a coma, but for now I'm treasuring the few moments alone while John and Ellie are sleeping.

There was kind of a scary time earlier this evening when Ellie woke up from her nap talkng nonsense...she couldn't find the right words to explain what she meant and what she did say made no sense at all. She came out of it, then fell back asleep again only to wake up and do it all over again. They ran tests on Ellie's blood to check her electrolytes and a resident came to look her over. The blood work came back fine, and the neurological checks that the doctor performed showed nothing wrong, so it's possible that Ellie was just coming out of dreams and seemed more awake than she actually was. I don't know, but it was very unnerving and I didn't like it at all. The rest of the evening was pleasant and uneventful.

Someone asked why Ellie's counts drop so quickly, and rather than answer it in the comments, I thought I'd mention it here as others are probably wondering the same thing. Chemo drugs target the fast growing cells in the body, which is why they kill off cancer cells. Unfortunately, cancer isn't the only type of cells that grow fast - hair cells, the lining of the throat and stomach, and blood cells end up getting caught up in the fall-out from the drugs. Because of this, after every cycle of chemo, Ellie's hemoglobin, platelets and white blood counts all drop rapidly. This can cause dangerous problems, so they give transfusions as needed and we give Ellie a shot every day for a couple of weeks to make her white blood cells increase rapidly. These measures basically rescue her body from potential danger, but in order for Ellie to go through another round of chemo, her body must be able to keep the blood counts high enough on it's own - without outside help from transfusions and injections. Usually it takes at least a week for all of her counts to bottom out. We spend the next week building the counts back up, then during the final week there is usually a small drop in counts, as her body takes over and begins to build them back up on its own. That has been the basic pattern over the past chemos. This time the counts fell faster and lower than the other times, so that was kind of a surprise to us. It is very possible that after having four rounds of chemo, Ellie's body is getting tired and there is a build up of toxins that are taking a toll on her. Also, the third round of chemo had completely different drugs than Ellie had ever gotten before, so I've wondered if those drugs had a longer-lasting affect on her counts...perhaps there was still some fluctuation going on when she went into the last round of chemo and the combination of the two bottomed everything out more severely this time. I don't know...I guess it's all speculation. Whatever the reason, it has been sobering to watch Ellie's body labor under so much stress this time. It feels like such a balancing act...to push her body to the breaking point, then try to get it back just in time. As unsettling as this all is, I must admit that it has been absolutely amazing to have a front row seat in watching how wonderful the human body is! I can't help but marvel at how God created such an intricate machine with parts so interconnected and interdependent, with the ability to right itself and compensate for losses and changes...always trying to restore balance and health. It's nothing short of a miracle to watch Ellie's body, frail and cancer-ridden as it may be, continually fight to do what it must do to not only keep going, but to actually try to heal. Due to the extreme nature of the cancer and chemo, it often takes medical intervention to turn things around, but every chance it gets, Ellie's body seems to jump in to do it's part to take over and restore balance...and every chance I get, I let it. These are the things that help me to hope...

Thank you all for faithfully checking this blog for updates on Ellie. We so appreciate the time that you take to read and care about our sweet girl, and our whole family. We are overwhelmed and humbled that you would choose to go on this journey with us. "Thank you" just doesn't seem like enough.

Getting some TLC at the Hospital

Ellie gets some much needed blood! (Notice the red line in the foreground...)

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We are now safely ensconced on the Hematology/Oncology floor of the hospital. We moved up to a room in the middle of the night...more doctors to see...more questions to answer...settle into the room. So, 5:00 a.m. I finally rested my head on the pillow. I did get some sleep despite the many interruptions, and John and Ellie were able to sleep as well as can be expected. Sometime in the early morning hours Ellie was given a platelet transfusion, and she is currently recieving the red blood. In the twelve hours between checking Ellie's blood at the clinic and re-checking at the hospital, her hemoglobin dropped from 6.8 to 5.4 and her platelets dropped from 24 to 16. The poor little girl was like a wet noodle by the time the transfusions started. She is already perking up a tiny bit. Her fever was still up in the night, but it has started going down this morning.

My mom is coming this morning to help out with Ellie and allow me to get a nap - wonder of wonders. (In between hospital visits, Ethan has been keeping me up at night.) Pretty soon when people pass me in the halls, they will need to politely avert their eyes from the lady with the glazed, bloodshot eyes who is sitting in the corner rocking and mumbling something about being so very tired...

A couple of pictures from Ellie's last round of chemo.
Ellie and Uncle Michael doing math homework:

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Ellie's favorite mode of transportation - IV pole:

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Wednesday, January 17, 2007

Back in the Hospital!

Well, it is 2 in the morning...and we are sitting in a room in the E.R. There are no available rooms on the Hematology/Oncology floor, so here we sit. This is the same room we came to on our very first hospital visit. Oddly enough it feels familiar in a comforting sort of way. In those first couple of days we were surrounded by so much love from family and friends, and the grace of God took over in amazing ways.

Today (actually yesterday - Wednesday - it feels like today still) we went to the clinic for blood work and found that all of Ellie's counts were very low. (For those of you who might be interested in the actual numbers: Hemoglobin - 6.4; Platelets - 24; White Blood Cells - 0.1) They scheduled us to come in on Thursday (today) for red blood and platelet transfusions. As the day progressed, Ellie started a low-grade fever, and by evening it had gone over the 101 mark (our signal to go straight to the hospital). So here we are. Ellie just fell asleep after having blood drawn through her broviak, and through her arm, as well getting a chest x-ray. She has been started on antibiotics just in case it is a bacterial infection. From what I understand, it is almost unheard of NOT to come back between chemo cycles with a fever. I think that Ellie getting to stay home between the last two cycles was a miracle.

While I was typing the last paragraph, the nurse came in and told us that a room has come available on the Hem/Onc floor so we will be moving. That will be good. We keep seeing children wheeled by on stretchers, and who knows what kinds of germs are lurking in a children's E.R. - I don't want to think about it! We were just about to go looking for a cot, as I am sitting in the only chair in the room and John has taken to pacing...never mind, he just curled up on a corner of Ellie's bed - at her feet. If I yawn any harder I'm going to need a flip-top head and now my stomach is starting to growl. Too much information? Sorry...since there is no more room at the foot of Ellie's bed, I'm starting to get bored. I will let you know what tomorrow...er, today...brings as we know more.

And so for now, while we may not be getting much sleep, we are resting...in the loving grip of our Father. On nights like tonight it is so easy to picture Ellie curled up in a little ball, sleeping in the palm of God's hand.

Tuesday, January 16, 2007

Recovery Days...

Ellie has been doing quite well these last few days. She has still had some pain everyday, mostly in her stomach, but has only thrown up one more time since we left the hospital. She has been doing well with her drinking, and the eating is gettin better every day. All things considered, I am very pleased. Each day Ellie's weight has dropped a little, but that isn't a surprise since she was on steriods while in the hospital and now she is losing some of the fluid build-up.

We are finally starting to see some of the grief of Ellie's cancer hit her in waves. I think that this whole thing has been quite a whirlwind for her, but now she is begining to see this cancer as a new way of life...and not a good one. She has had some times of sadness missing her friends and school, but the other night Ellie truly broke down and had a good hard cry. We had been watching it build for days, and when it came it was heartbreaking to watch. Still, I could see the tears wash the ache away from her heart and I felt that in the end it was good for her and brought much needed relief. I am often reminded to be thankful that Ellie is old enough to be logical and reasonable, but young enough to be flexible and adaptable. She is able to recognise how she feels and has the ability to process much of the information about her cancer, but then she can turn right around and play like she doesn't have a care in the world. It's good to be eight.

Thanks so much for your concern for Ellie - your love and prayers mean so much!

Saturday, January 13, 2007

One Day Home...

We arrived home from the hospital last night, and have been enjoying being home today! Ellie has had a fair amount of mouth, throat and stomach pain, but has only thrown up one time during this whole chemo cycle...and that is a record for her! Today the challenge has been to keep enough fluids in her. She has been trying hard to keep drinking and eating little bits at a time, but it is very hard to drink enough. Going from around the clock IV hydration to doing it all herself is quite an adjustment. Please pray that she can drink enough so that we won't have to go back to the hospital.

Ethan will be home tonight - I can't wait to see him. I've spent the day unpacking and cleaning up. This is the very first time I've been able to completely unpack right after a hospital stay. (I must confess, there are still things in my laundry room that I've not unpacked from our FIRST hospital stay, ugh.)

I'll continue to let you know how things are going...sorry I'm not so consistent...it's much easier to keep up with updates from the hospital. When we're home, days go by so quickly and I don't even realize that time is flying by.

I hope you all have a good evening. Thanks for always checking on Ellie and praying for and loving her!

Friday, January 12, 2007

Maybe Going Home....

Ellie's chemo will be done in a couple of hours. One of the drugs is a continual 72 hour drip, and it will be done soon - hooray! I don't like sitting here watching the orange liquid drip into Ellie's body. There is a warning label on the ouside of the bag to let people know not to handle it without protection, as it causes blistering...and it's been dripping into Ellie's arteries for 72 hours! Ugh. Ok, I'm done complaining...just had to get that off my chest.

Overall, I'm pleased at how Ellie has come through this round. She had a good night last night...she didn't need anything extra for pain and nausea, but I have been able to see that the accumulation of the drugs is starting to get to her. There's a constant stomach ache that is very draining - even the steriod isn't giving her as much extra energy as it did before. They say that we will probably be able to go home today. I have mixed feelings about going home. It is always nice for Ellie to be able to relax in the comfort of her own home, but she also has to be able to drink enough water to keep from dehydrating...whereas in the hospital we can rely on the IV fluids. Still - there's no place like home. :-)

There's a verse from a card that one of you sent to us, that is my prayer for Ellie today: "...I am He who will sustain you. I have made you and I will carry you..." Isaiah 46:4

We will keep you updated on any changes, as they happen. Maybe the next post will be from home! Thanks so much for your love and concern for our little girl. I don't think that she fully understands how many people are praying for her and love her, but we do...and we are forever grateful!

Thursday, January 11, 2007

Joy of the Soul

Ellie had a good night last night...nothing like the previous one! She is actually still sleeping. Thanks so much for praying.

I have been giving a lot of thought lately to joy. Sometimes at the most unexpected moments, this deep bubbling joy will rise up the surface and spill out. Often for no particular reason the sights and sounds around me will stand out in sharp relief and I will feel as if the air is fresher and the colors are more beautiful than ever before. And I see this joy in Ellie. God has given her a most precious gift, as she sings and giggles through each day. Obviously, there are times of pain when she cries, but when the pain is over that glorious joy is right behind it. What I have come to realize is that this kind of joy just cannot be summoned up out of ourselves on a whim...it's a wonderful gift from God. We picked the verse on the header of this blog with care, and I love the whole passage that it comes from. Often one or two different verses will have special meaning for me, but I think it's time to just read off the entire 8 verses as a whole: (The verses on the header are out of the New Living Translation, which I loved for Ellie, but the following are out of the New King James - there are several verses that I love in this version.)

Psalm 63: 1-8
"O God, You are my God; early will I seek You; my soul thirsts for You, my flesh longs for You in a dry and thirsty land where there is no water. So I have looked for you in the sanctuary, to see Your power and Your glory. Because Your lovingkindness is better than life, my lips shall praise You. Thus I will bless You while I live; I will lift up my hands in Your name. My soul shall be satisfied as with marrow and fatness, and my mouth shall praise You with joyful lips. When I rememeber You on my bed, I meditate on You in the night watches. Because You have been my help, therefore in the shadow of Your wings I will rejoice. My soul follows close behind You, Your right hand upholds me."

What stood out to me in this passage was the word soul: "my soul thirsts for You...my soul shall be satisfied (NLT says 'more than the richest feast')...my soul follows close behind You." I guess that's maybe where the difference is, it's on a soul level. I get so tired sometimes and I cry and I feel selfish and miss my old life (and for that matter, Ellie does too) but in the end, our souls are satisfied...and we have joy.

May God bless you all today with this wonderful gift of JOY!

Wednesday, January 10, 2007


Today is pretty much a quiet day for Ellie. She had a difficult night. She threw up once in the middle of the night and had some severe leg pain. The nurse came in an gave Ellie something to help her sleep, so the rest of the night was un-eventful. Last night the realization hit us that one of the anti-nausea medications is a steriod which always makes Ellie extremely hyper. She appears to be doing great...until the crash at the end of the day. Still, the benefits outway the side-effects of this drug, so there's not much to do but be aware of it. It's very tricky because it's hard to keep her from overdoing it when she appears to feel so well. The energy is a false energy that tries to just burn up instead of going back into Ellie's body for healing. So today we had a little talk, and thankfully Ellie is a very reasonable and logical little girl. As we were talking, her legs were boucing and her hands were moving constantly. Of her own accord, Ellie began doing some deep breathing (the way that we do for pain control...also to help Ethan "get his control back") and her limbs became still. She really seemed to grasp the concept. Putting it into practice on a moment to moment basis all day long (when she's trying to zoom her IV pole up and down the hall) is a little tougher, however...

OK, now for the pictures I promised...

Ellie sleeping in her tent at home:

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Ellie the spy...and Ethan shooting the spy (with a hammer, of course):

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I couldn't resist taking this picture the other night:

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Grandma Lois had a great visit with the kids...Ellie was roaring for some reason. Notice the lovely hair piece - Ellie's having fun experimenting with some different looks:

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Shamu came to the hospital for a visit yesterday...and Ellie just so happend to have a stuffed whale from Sea World with her here. She showed it to Shamu.

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Tuesday, January 09, 2007


Day one is coming to a close, and so far Ellie has done beautifully. She has had great energy all day and has been so happy...constantly humming and whistling...playing and giggling. This evening she had some stomach pain, but it hasn't been constant. As with every cycle, there is a cumulative effect, so despite the fact that on each of the three days there will be one less medication given, the accumulation of drugs in her system grows each day. I do feel that Ellie has gone into this cycle stronger than on any other thus far, so overall I'm encouraged. We will take it one day at a time.

John had lunch with his parents and Ethan. He said that Ethan's doing very well. He's happy and even let his daddy leave without crying. After work, John came to the hospital to spend the evening.

And so, for tonight my family is content and peaceful...and for that I'm thankful. There's a little quote by Ralph Waldo Emerson that sums up where I'm at tonight: "When it's dark enough, you can see the stars."

Round Four Begins!

Well, so I guess I was wrong! I'm writing this from the hospital. We got in late last night. Ellie's blood counts were fine, but at the clinic we were told that there weren't any beds available yet at the hospital, so we should call every day until one came open. Yesterday afternoon I was vegging on the couch (rather, my bed, which doubles as a couch these days)...the house was a wreck, but I didn't care - I hadn't slept much the night before and had a pounding headache. We weren't going anywhere, so why not leave the picking up until tormorrow... The phone rang and we got word that there was a room for us! So I spent the next five or six hours cleaning up the house and packing.

As I sit right now, there's a peaceful calm feeling surrounding me. My house is in order so we will not be coming home from the hospital to chaos. I'm back in my little cocoon at the hospital. Ellie is sleeping soundly this morning, as chemo hasn't started yet. Ethan went happily to Stan and Pat's last night after having a good evening at home, playing nicely with his sister (wonder of wonders!). John brought us to the hospital last night and stayed over with us, then got up early and went to work. And for the moment my couple nights of sleep deprivation haven't completely caught up with me. I do dread the chemo and how that will make Ellie feel, but for now there is calm. I like calm.

This morning Ellie will get an EKG and an Echo Cardiogram before chemo starts today. I'm glad for that, as this is Ellie's fourth cycle of chemo and I'd like to know how her heart has taken the previous three. Literally as I was typing the last two sentences, a lady came in and did the EKG. Ellie woke up enough to do the test and take the stickers off herself (very important that she do it herself!) and then rolled over and went back to sleep. The last time she had an EKG, Ellie was scared to death...she asked a million questions about the stickers and how it all would feel. This time she handled it like a pro. I didn't even have to get up out of my chair! I just cannot get over how quickly Ellie has adapted to everything. Even coming in for chemo is no big deal for her. I think she kind of enjoys the change of scenery and getting to talk with the doctors and nurses. She is a girl, after all, and already has a certain number of words to get in each day (I think that her number is actually greater than mine!). On the way to the hospital last night, we had music on in the car and I was hoping that Ellie would fall asleep. During the last 10 minutes or so of the ride, her eyes were closed and we were convinced that she was asleep. As soon as John pulled into the parking space, Ellie's eyes popped open and she grinned. She said that to keep herself from talking, she closed her eyes and made up stories. What a funny little creature!

I will let you know how things go here at the hospital, as they happen. When you're thinking of Ellie, please pray that this round of chemo will go well and that the drugs will do their work on the cancer, but not take too big of a toll on her body. Thanks so much!

Sunday, January 07, 2007

Quick Update

We have had a busy several days. We had a really nice time with Grandma Lois - the kids had so much fun getting to know her again.

Ellie goes in to the clinic tomorrow for blood work. She may be able to go in for chemo sometime this week if her counts are high enough. My guess is that it won't be in the next couple of days (judging by her coloring, I think that her hemoglobin may be low...but what do I know? I just like to guess). Ellie does have great energy and a wonderful appetite - the trick is keeping that good energy from burning up all of those good calories. She has finally made it to 47 pounds!

It is very late...ok, very early...so I will keep it short this time. I'll let you know what happens tomorrow. Thanks for praying!

Thursday, January 04, 2007

Test Results...and Future Plans

I'm sorry I haven't posted in a few days. Ellie did fine after the bone marrows...she has had a little soreness, but not enough to slow her down much :-)

The results came back that there is still a little neuroblastoma present in Ellie's bone marrow, but the Doctor's sense was that there has been improvement. We will not be heading up to Jacksonville for the stem cell harvest this cycle, and Ellie's doctor will be conferring with the doctor in Jacksonville to determine whether it's even possible to try after the next cycle of chemo. Apparently the longer we wait, the more difficult it is to be able to harvest any stem cells at all. While this may sound like discouraging news, we actually are somewhat relieved. We have heard a lot of pros and cons regarding bone marrow transplantation, so we are really at the point of praying that God will bring everything about in His perfect timing...and that might mean no transplant (and no harvest). Since we truly do not know what is best for Ellie on this one, we will just wait and trust that God does.

Along with the news of Ellie's bone marrow results, we were told that some of her counts are down, particularly her white blood count. This means that Ellie will not be going in for chemo until next week, at least. We are happy that this will give her more time at home to EAT! Everyday Ellie has good energy and she manages to keep eating more and more. We are praying that she will go back into the hospital weighing more than she did before the start of the last round. Her current weight is hovering close to 46 pounds (which is 2 pounds higher than when we came home from the hospital). I would be thrilled if she could make it to 48. Her stomach rarely ever bothers her these days, so everything settles well! The main reason that weight gain is such an issue right now, is that after cycle 5 of chemo Ellie will undergo surgery to remove her left adrenal gland (the location of the origional tumor). Given how easily Ellie loses weight, and how difficult it is to regain, surgery has the potential to throw her body for a loop. Many children loose weight when they have cancer and go through chemo, but they mostly start out as normal sturdy little kids. Ellie started out looking like a cancer kid, not at all sturdy and certainly not plump - her starting weight was only around 48 pounds. Going down from that point is simply not an option we want to consider. (The picture at the top of this blog was taken in the hospital after she had been on steriods for about a week - she hasn't looked that full-cheeked since she was two years old!)

Tonight we picked up my Grandma Lois from the airport. It was great to see her again, but the kids won't be able to see her until tomorrow. Ellie is SOOOO excited. We haven't seen her for at least 2 years. I will try to keep you up on any major goings on, but my updates might be a bit patchy over the next several days. I'll try to get some good pictures to post.

Thanks so much for your love and prayers, and I'm sorry I didn't get you the results of her test sooner...I'll try to do better next time. :-)

Tuesday, January 02, 2007

Procedure Day

I'm sitting in the hospital...Ellie is having her bone marrow biopsies right now. John is in there with her, but I always chicken out and leave just before they start - once she's sleepy enough to not miss me. As I sit here, my prayers are more with John than Ellie. She won't remember any of it, but John will - and he hates watching her go through this. To make matters worse, John has had this same procedure done before - WITHOUT any drugs! My stomach hurts just thinking about it.

Last night as Ellie went to sleep, we were talking about today, and she started reminding me to bring this or that (things that I really would have forgotten without my responsible little first-born's foresight). She started asking questions about the procedure - what other things they might do, like dressing change, etc. She doesn't remember last time - how they changed her dressing and how she took the heart monitor stickers off herself. I told her how she kept asking the same questions over and over as she was coming out of it. She got hysterical (laughing) as I told her about it. Finally Ellie settled down. She wanted to sleep in her pink princess tent (that Stan and Pat got her on New Year's Eve), so we were lying on her bedroom floor in her tent and I started rubbing her little nearly bald head as we listened to music. I think that she was sound asleep when a beautiful song came on that I have heard before, but listened to this time with new ears.

Hold on to Jesus
Erin O'Donnell

You're a little piece of heaven, a golden ray of light
And I wish I could protect you from the worries of this life
But if there's one thing I could tell you, it's no matter what you do
Hold to Jesus - He's holding on to you.

The world will try to tell you that might is more than right
That beauty's on the outside and being good's a loosing fight
But remember what I've told you, because the world will make you choose
Hold to Jesus - He's holding on to you.

Hold on to Jesus, and cling to His love
Rest deep in His mercies whenever things get rough
Don't lose sight of His goodness and don't ever doubt this truth
That when you hold on to Jesus he's holding on to you.

Hear me dear Jesus, rock this little one to sleep
Keep her close when she's scared and give her strength when she is weak
I know she'll stumble, but I know she'll make it through
If You hold on to her just like you said You'd do
Hold her Jesus and she'll hold on tight to you.