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.

Saturday, December 30, 2006

Quick Update

Ellie had bloodwork done on Friday and it showed that while her white count was up, the platelets were down. Hemeglobin was hovering in the low-ish numbers. She went to the hospital yesterday for another check, which showed that all of the levels are going up! We were prepared for her to at least need platelets, but they had doubled overnight. Hopefully she will hold her own until the bone marrow aspirations on Tuesday.

This coming week promises to be a busy one. Ellie and Pat are planning a new year's eve party. I have not heard all of the details...but the periodic grins and fits of giggles tell me that there are some fun things in store! Later in the week my Grandma Lois is coming from California for a visit. We're excited to see her!

I hope that you all will have a great new year's eve - I can't believe that 2007 is around the corner! Where does the time go? Don't you ever wish that you had a remote? There are so many moments that I wish I could freeze-frame and watch slowly and savor...and there are just as many these days that I wish I could fast forward. Still, I know that it's important to experience each one to the fullest. Thank you for embarking on this new year with my family - we love having you along for the ride!

Christmas Pictures at Last!

Hi everyone. Sorry I haven't posted in a couple of days...quite frankly, after the last one I was a little drained. I finally am able to get some pictures out to you.

Christmas Eve...our very own "Thing 1" and "Thing 2" (Do you remember the story? Well these two are capable of doing the same things to a house. Where is that cat with his special picker-upper machine when I need him?)

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Ellie and her Bubbie (Pat Skees)

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Christmas Day...Ellie's face says it all!

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...And out of the box

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A picture's worth a thousand words...

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To Ethan, no one else exists

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Thank you for helping to make our Christas special! We hope that you all had a wonderful time with your families.

Wednesday, December 27, 2006

A Father's Journey

I have been asked numerous times how John is holding up through all of this, but I have been careful about the information that I give about him on this blog. I have made a point to be very transparent with all of you about my own thoughts and feelings, but I have wanted to be careful with John's heart. It is one thing to allow others to see through you, but another thing entirely to "lift the blinds" so to speak, on someone else's heart. I asked John this evening if he ever wanted to update the blog and give you all a glimpse into his feelings and experiences throughout this ordeal. He said that he wouldn't mind getting on sometime, but it has just been too difficult to find the time lately. He's stretched so thin these days. He is willing to share his heart as well, and the thing that thrills me more than I can say - he trusts me to do it for him.

O.k., here goes... I've been told that I need to post a tear-drop rating on these entries, so consider yourself warned on this one...

I read a quote some time ago by a man named Joseph Addison (I collect random quotes) that said "In love to our wives there is desire, to our sons there is ambition, but to our daughters there is something which there are no words to express." I saw this unexplainable emotion in John the very first time he looked at Ellie, eyes full of tears, as he took in the sight of his tiny daughter. I have seen it many times over the years...this tenderness that is reserved soley for her. And I felt the full force of it a few months ago in the emergency room, in the middle of the night when I held John as he shook with sobs, saying "please God, no...not my little girl...please not her." You see, John is not a man who cries easily, but neither is he one to shy away from strong emotion when it is warrented. This is perhaps one of the qualities I admire most about him. I will never forget the look on John's face a couple of weeks after we learned of Ellie's cancer when we met a man at the Ronald McDonald House. This man told us that his daughter had just come through heart surgery. John, feeling a connection to this other father, asked "doesn't it feel sometimes like you have no more tears left to cry?" The man looked a little blank and slightly flustered as he replied "um...well...you know, I don't exactly cry, but...well, you know, It's hard." I watched as John worked to keep the astonishment off of his face (and didn't quite succeed). I wanted to throw my arms around him on the spot. My unbelievably open husband was not able to even conceive of a world where a father could not manage to squeeze out a single tear for his little girl. In his world this was unthinkable. During those first couple of weeks, John did what I have come to think of as "speed-grieving". He went to the darkest place first...the place where he actually felt the shock of losing Ellie completely.

And then, just when I thought that he might not be able to recover, John emerged from that dark place so strong that it took my breath away! His trust in God was rock solid, and he had an amazing ability to think and plan. John is the one who re-introduced me to the Twila Paris CD that I quoted in earlier postings. In those early days in the hospital, there were many times that John had to leave late at night or early in the morning to get home to be able to work. He would arrive home to an empty house and put on that CD. There was one song in particular that soothed his wounded heart like none other, and he later shared it with me. This song has kind of become our family's theme song.

Do I Trust You Medly
Words and music by: Twila Paris

Sometimes my little heart can't understand
What's in Your will, what's in Your plan
So many times I'm tempted to ask You why
But I can never forget it for long
Lord what You do could not be wrong
So I believe You even when I must cry

Do I trust You, Lord? Does the river flow?
Do I trust You, Lord? Does the north wind blow?
You can see my heart, You can read my mind
And You've got to know that I'd rather die
Than to lose my faith in the One I love
Do I trust You, Lord?
Do I trust You?

Lord, I'm keeping my eyes on You
Following You, following You, my Lord
I'm keeping my eyes on You
Following You, following You

I won't look ot the left or right
My only goal is keeping you in my sight

We will glorify the King of kings
We will glorify the Lamb
We will glorify the Lord of lords
Who is the great I Am

I will trust You, Lord, when I don't know why
I will trust You, Lord, 'till the day I die
I will trust You, Lord, when I'm blind with pain
You were God before and You'll never change
I will trust You, I will trust You
I will trust You, Lord

That song just spoke words of strength and comfort directly into John's heart. It gave voice to his fears and weaknesses and then direction for where his focus should be, and then the incredible perspective that we are to have that God's glory is the ultimate goal in all. John then passed this song on to me, and together we have been comforted.

The days have blended into weeks, and now months. Sometimes the days are long with work for John, and often he is pulled in several directions at once. Sometimes exhaustion sets in. Most of all, I have seen John go into warrior mode. No matter what else is happening, he keeps Ellie's welfare and the good of our family in the forefront of his mind and heart. I have been in awe of his ability to make hard decisions...and uncomfortable decisions with all of the unflinching strength of a general. It must be a man-thing. I just cannot seem to separate my emotions from the mix. I have never been more thankful than I am now to have this man as the head of our home. His protection and care for our family has allowed me to be myself and be unburdened with things that are outside of my capabilities. He is our very own tender warrior.

And so, after almost 13 years, this husband of mine continues to show me new sides of himself. By far the most endearing, and at the same time the thing that breaks my heart, is John's ability to absorb the hardest parts of Ellie's cancer out of love for her. He subjects himself to watching her bone marrow biopsies just so that she can see his face and hear his voice during the entire thing...whether she remembers it later or not. He is the one to give her daily injections so that he can be as careful as possible, even though he hates doing it. And in this he also protects me from having to do it.

I love this man, who's work toughened hands are the most beautiful and loving that I have ever seen. I respect this man, who has the courage to be tender. In the words from Song of Solomon: "this is my beloved, and this is my friend."

Tuesday, December 26, 2006

Day After Christmas...and all is well...

I only have a few minutes tonight, so I will have to get pictures out in a day or so, but I just wanted to let everyone know that Ellie's doing well...we've just been busy the last couple of days, as has everyone. We had a great Christmas, just quiet and low-key. (Although Ethan was there, so "quiet" is not the right word to use!) We spent some time on Christmas Eve with John's parents, then we went out the Michael & Kathy's to stay the night with them. We woke up there on Christmas morning. Of course the children were clammoring for presents and tore into them as all children do! We had fun watching their excitement. We spent the day hanging out together while the kids played - it was wonderful! We did miss my family this Christmas, as there was some sickness that prevented us from bringing Ellie around them. We also missed everyone at the Skees gathering on Christmas day, as we cannot risk having Ellie around very many people these days.

Ellie went in for more bloodwork this morning, and her counts are lowering again. While down, they aren't quite low enough for more transfusions yet. For the most part her energy is good and her spirits are high. Something John noticed when he took Ellie to clinic today, and I had noticed when I took her last week, was how easily and matter-of-factly Ellie discusses her cancer with others. (Last week I listened as she told someone that she has "neuroblastoma" - I was expecting her to say "cancer".) We are starting to see her identify herself with other kids who have cancer, and almost enjoy telling her story. She speaks openly, yet without emotion about the difficult things (like losing the sight in one eye) and even puts a positive spin on things like her hair loss. Today Ellie told the mom of a little boy at clinic that we thought that she would loose her hair right away, but - with a smile and toss of her head - it's not all gone yet! She also happily tells people that it's so strange how all of the dark hairs fell out and it's only light ones left. I love watching her adapt and roll with things, even though I wish that she didn't have to adapt to such extreme things. Ellie doesn't always like the idea of something (she cried when I first told her that she would lose her hair) but the idea gradually sinks in until it becomes a very "normal" thing for her. About a week ago, Michael was helping Ellie with a beading project - bless his heart - and the light was poor, so I turned on the overhead light. Michael said "Ellie may not need it, but I'm half blind" to which Ellie dryly responded "actually, I am!" (It's a good thing I wasn't drinking anything at the time, because I would have blown it out of my nose!) It warms my heart to see her dealing with these new things in her life with humor and grace.

Well, as usual my "couple minute update" has turned into something longer...but when the mood strikes...

I hope that you all had a wonderful Christmas. Thank you so much for your part in making ours special!

Saturday, December 23, 2006

Merry Christmas to All!

I just wanted to wish you all a merry Christmas. (Assuming anyone out there will be reading this in the next couple of days...I know that I probably won't get back to the computer until Tuesday...) Thank you all for your well-wishes this holiday - it has already been a special time for us, and so far promises to be a wonderful Christmas for our family. I will post pictures next week.

Ellie is doing very well right now. Yesterday's transfusions left her with more color in her face and some more energy. She doesn't have any more nausea, but she also doesn't have a very strong appetite at the moment.

A couple of days ago Ellie and I were alone in the house and she was having a difficult day. Everything seemed to irritate her and she didn't respond well to my encouragements to eat, drink, etc... I was telling John's aunt Loretta (in Montana) about it over the phone and she came up with the thought that Ellie was probably going through what I (and others of us who are "in the trenches" so to speak) have been going through lately...the feeling that we just want our lives back. (Where's the 'easy button' when you need it? - you know: "I'm all done...thanks for playing...bye-bye now!" and *poof* life is all back to normal.) So I sat down next to Ellie when the opportunity presented itself and said "I can tell that you're having kind of a hard time today, and I was just wondering if you are wishing that you're life was back to what it was before you had cancer - going to school and seeing your friends and stuff." Her eyes immediately filled up with tears and her face just crumpled. She quietly nodded and leaned her head forward until it rested on my chest. I told her that I had cried some for the exact same reason and that it was o.k. to cry about it...that sometimes it even makes you feel better. We just snuggled and talked for a few minutes and she cried a little, but not a big heartbroken kind of cry. The moment passed and the day went much better. It was such a good experience for me, because I forget sometimes that she is capable of feeling some of the exact same things that grown-ups are, but she doesn't understand why she feels the way she does. If I would take the time every once in a while to think about how I feel, then imagine how it must be in her shoes, I can hopefully help her through some of these things. I'm just extremely thankful to have people (especially Loretta) who look out for us...we could never get through this on our own and stay sane, or keep Ellie sane!

Tonight while we were eating supper, there was a knock on the door and a group of people (that we know) were caroling on our porch. We took the kids out to listen. Ethan leaned in really close to John and said "Daddy, I'm feeling a little nervous..." So John knelt close and cuddled him during the singing. It was so nice to see the familiar faces and hear the wonderful Christmas music. Ellie listened quietly, then smiled and waved as the group left. The moment we got back into the house, I looked at her face and she was smiling from ear to ear! She had been so reserved as the people sang, but once inside Ellie could barely contain herself - she started laughing and tried to tickle me, and she just could not stop smiling! Later in the evening Ellie was humming and singing as she played in her room. She has had a good day overall today, but there was a very striking joy and peace in her heart this evening.

I pray that the wonderful joy of Christmas will be with you over the next couple of days wherever you are and whatever you are going through. There is nothing better in the whole world to be celebrating than the day our Savior came to Earth as a tiny helpless baby...it is especially poignant to me this year that He would choose to come and experience all of the heartache and pain in this life BEFORE sacrificing His life to save me from my sins! As if it wasn't enough to save my soul, He had to actually experience all of the heartbreaks that I do and be able to not just know, but UNDERSTAND my heart - it just blows me away!

Thursday, December 21, 2006

Getting some "go juice" before Christmas

The blood work today showed that all of Ellie's blood counts are going down...not a big surprise. She will get a platelet transfusion and red blood transfusion (aka "go juice" as it brings much needed energy to the recipient) tomorrow. These should help her feel good for Christmas. Also - there seems to be no more nausea these days, even without the anti-nausea medication! We are so thankful. Despite the few difficult days in the begining of this cycle, I think that we can officially say that it was her best chemo yet. And you were so worried... :-)

Ethan came home tonight, to a VERY chaotic house. He didn't seem to mind and even said "I'm so happy because I'm home at my house!" I think my all time favorite quote of his came this evening as he was hugging me goodnight. He patted my arm and face, then grabbed a handful of skin on my face and happily said "I love fat skin!" You've gotta love complete candor!

Lots of love from my home to yours!

Wednesday, December 20, 2006

Snowglobe Surprise!

Yesterday we went to Michael and Kathy's (John's uncle and aunt) for a visit, and ended up staying over night and all day today. We had a great visit, and it was like a mini-vacation for me. I was able to read, watch TV, and enjoy my computer (after Michael fixed it for me...it had been doing some strange things lately). I even got the creative outlet I had been needing - I was able to rearrange Kathy's living room. In case you are wondering, no I do not randomly go around rearranging people's furniture (that would just be rude)...I had been helping Kathy with this before Ellie got sick, so it was a continuation of a former project fo me. (O.k, I guess I'm kind of lying...if you're reading this, then in all likelihood I have rearranged your furniture before...maybe more than once...maybe even long distance with pictures or over the phone...drawn diagrams on napkins in restaurants...or perhaps talked about it but never gotten to it - yep, that just about covers all of you except the ones I haven't met. How rude!) Sorry, back from that rabbit trail. Ellie had fun too - yes, I do remember that I have a daughter. She had a blast - she watched TV, sat in front of their new and beautiful fireplace, watched families of racoons come up on the back porch to eat the cat food, played on the computer and got some special attention from Michael and Kathy. John was working both days, but he stayed the night with us.

Tonight when we arrived home, there was a gigantic inflatable snow globe in our yard waiting for Ellie from Jenn & Jim and family, Mom and Gary, and Grandma Jean and Grandpa Jim! I woke Ellie up just before we pulled into the driveway and she was shocked. When she finally got her bearings, Ellie jumped out of the car and ran across the yard. I did get some video, but I'm having some technical difficulties with putting it on the blog, but I do have a picture of when they set it up.
[Thanks guys for doing such a special thing for Ellie - she was so excited! She has been admiring other people's Christmas decorations, especially the snow globes. Thank you, Jenn for coming up with such a wonderful idea. I'll try to get a good picture on tomorrow of Ellie in front of it in case I can't get the video to work.]

Left to right: Mady, Jenn holding Libby, our newest niece, Emma (who just arrived from China!) held by Mom

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Tomorrow Ellie has a clinic appointment to check her blood levels. I think everything is dropping, particularly her hemiglobin. It will be good to find out if she needs any transfusions before Christmas. We also plan to bring Ethan home tomorrow...I just need to unearth his bed. We miss the little guy, and I know that he's puzzled and disturbed because of all the upheaval. He's happy and doing well for the most part, but he sometimes has dreams and thoughts that he's never going to come home again. He also dreamed one night that I left him in a building. I know, it's so sad. As soon as he's home again, he should see that we are still the same famly that we've always been. Poor little guy. He sometimes says "Mommy (or Daddy) tell Papi and Bubbie 'thanks for taking care of my little buddy'." We obligingly (and gladly) thank them and for some reason that just tickles his little heart.

Oh, I also wanted to let you know that if you post comments, you may want to check back on them because I do try to reply to them, particularly if you ask questions. Also, if you sent in a comment but haven't seen it posted, or I never answered your questions, please re-post your comment. I know that I have lost at least one...I accidentally deleted it before it posted...anyway please don't hesitate to try again. I'm so sorry if I've missed any. I do enjoy hearing from you, you are all so encouraging and it always blesses my heart to know so many people are out there loving us and praying for us. Thanks so much!

Tuesday, December 19, 2006

Daddy and His Girl!

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Morning Coffee...and Chicken Soup

This is love, people...for me to show you my morning bed head! For the full story behind this picture, see post below.

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Monday, December 18, 2006

Another Good Day...

I am pleased to report that Ellie had a very good day today (Monday)! The moment her eyes opened this morning, she literally popped out of bed and ran into the kitchen with John. After some whispering and rustling around, Ellie proudly presented me with a cup of coffee in bed! Her smile lit up the room. She then disappeared again in a fit of giggles...some more rustling and carrying on, then she hopped into bed with me when John produced a piece of toast (that she had helped with) for me, and a cup of chicken soup for Ellie (her request). She wanted to make sure that I had my coffee first so that I could "wake up a little before eating." Once breakfast was finished and John had gone to work, Ellie again jumped out of bed and ran to the kitchen. This time she emerged with a full glass of milk for me. She drug a stool from her bedroom and got my vitamins out of the cabinet, then I watched in amazement as she got another glass out for my water. (I had wondered how she got the first glass out of the cupboard for my milk.) She went to the corner of the countertop, put a hand on either side and hoisted herself up onto the counter. Then she crawled across the counter to the right cabinet and opened the door over her head (still on all fours). She reached all the way to the top shelf and got out a big glass and set it on the counter, then hopped down. I guess she thought I needed some TLC today or something.

...She was right. I had another meltdown today. I hate it when that happens, but I guess it's necessary from time to time. I think that I store up the emotions and then after a while something little sets me off and the flood gates open. This is never a pretty sight, but I do end up getting some relief in the end...despite the splitting headache. It seemed that all of the recent stresses of life sort of attacked me all at once: sick child, missing the other child, chaos at home, no personal time, lack of creative outlets, no time with friends and family due to possible contagion of illnesses, etc...you get the idea. Well, after a gigantic pity party and only a headache to show for all of my venting, I ended up going out with a couple of friends (whose households are finally healed from sickness). I went out completely drained and feeling sorry for myself, but returned feeling peaceful and thankful. God is so good to me. By the end of the evening (now early morning) I have seen the other side of those "stressers". I have had the most precious times lately with Ellie that I have had in all 8 of her years; I don't have the responsibility of caring for Ethan as well as Ellie all at the same time (which would probably kill me); the chaos in my home will soon give way to much needed space and organization due to the kindness of family members and friends; God knows that I don't need the responsibility or have the strength right now that goes along with most of my creative outlets; I am being daily taken care of by family and loved ones who sense my every mood and need; I have friends and family who love me even when I can't see them because of possible contagion factors; and most of all I have a husband who not only works tirelessly, but also fearlessly makes the tough decisions that protect our daughter and family - I don't know that I have ever respected him more than I do right now. (Although I made the decision a long time ago to respect him - as unto the Lord - whether he deserves it or not.)

Ok, I inteded this to be a quick update but as usual I have a lot to say...hmmmm. I decided a while back when I stated updating this blog that I would be open with you all even about the bad days. You have done so much for my family, and the only thing that I have to give is my heart. The only thing that I can do for you all is to be honest about how I really am. I continually bring it back to where I am at day to day because I cannot speak for anyone else. All I know is where my own heart is at. I do check with both John and Ellie when I share sensitive information about them, but for the most part you are seeing everything through my eyes...because I see through my eyes. I wish that I could tell you that I'm perfect and that I'm handling all of this upheaval like a saint, but I can assure you that's not the case! The one and only thing that I can tell you with certainty is that I am weak and broken, but I have a strong God who carries me through the times when I am unable to walk on my own.

Thank you for taking my family into your hearts...it is a blessing and and honor to have you all as a part of our lives - family, friends, and strangers alike!

Sunday, December 17, 2006

Ellie Bagged a Buck!

Ellie's greatest joy these days is shooting people with a suction cup dart gun. She pops out at the most unexpected times. Her latest prize...Uncle Freddie! (She really did shoot him...she said that she was just aiming for somewhere that it would stick!) Some thanks for all of the work he's been doing on our house.

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Thoughts on Mothering...

Sorry for not posting yesterday...it was a very busy day. It started out with Ellie throwing up straight away on waking up. Not a great begining to the day. Later there was a struggle to find anything at all that she could get down. I finally decided that I would make her take something that was good for her, and that if she would just give up and take it, it would help her feel better and turn the day around. I finally got the last bite in her and she threw up everything that was in her stomach for the day (it was 11:00 in the morning)! I wanted to cry...it was one of the moments that as a mom, you just hate. You try to do the thing that you know is good for your child, even though it means being tough, and you think that if the child would just listen to you and give in they would understand...then it all goes horribly wrong. Ellie just looked at me, as she hovered over the bucket, and said "Mom, I tried to tell you that I couldn't eat that, but you just wouldn't believe me" (as the knife went straight into my heart) "I was hungry earlier, but you didn't hear me calling..." (now I need the bucket...) I forgot my own advise about listening to her intuition about her body. I knew that, but I guess I just thought that she was being stubborn and trying to not do something that she didn't want to do.

It is very hard trying to balance the caring, comforting side of mothering with the tough, discipline side now that Ellie has cancer. In many ways she is still a typical 8 year old girl with all of the attitudes and things that go along with it, but she is very different in other ways. The best way to describe it is that on an emotional level, it's like all of her outer layers have been stripped away and the part that's left is the innermost fragile and tender part. I think that even young children have a way of protecting that inner part, especially with their parents. They know that we love them, and so they learn to brush off the times when we are grouchy or unwarrentingly harsh. Because they can put it all into context, they don't let it reach that place where it would really hurt them (unless, of course the parents really are abusive, but I'm talking about the normal things that loving parents sometimes do). What I've seen in Ellie is that all of her physical and emotional resourses have been directed straight into survival. The only part that's left is SO easy to bruise. The first time I noticed this was when we came home from the hospital the first time (after being in for a month). I was overwhelmed and tired, it was bedtime and Ellie was stalling (or so I thought). After repeating myself several times, I said something in exasperation like "I don't know why it is that you think you can just ignore what I say. When I tell you to do something, you just think that you can pretend I'm not speaking and do whatever you want instead." When John put her to bed, she curled up in a little ball and just cried. I felt terrible. When I finally got into bed that night, my hand touched a piece of paper under my pillow. On the paper were two crooked little misspelled words: "I'm sorry." Needless to say, I sobbed myself to sleep that night.

I guess this all is a good lesson for me. It doesn't mean that I am able to give up on disciplining Ellie, but I have to be much more careful about when, where and how. I have to be much more controlled myself...and that's hard. There are still many times where I have to bring Ellie up short on an attitude or something, and I fully plan to continue that. I can't stop being her mom just because she has cancer...I wouldn't be doing her any favors. But I do have to rely even more on God to prompt me as to what Ellie can handle, and what things have nothing to do with attitudes or stubbornness and are just my own inability to be patient and kind. In all of this, I choose not to live in guilt over my mistakes, but I've accepted God's forgiveness for them and am hoping to live in God's grace and do the right thing the next time.

Ellie kept everything down yesterday afternoon and has done great so far today! The only sad thing is that she did mention yesterday that she had trouble hearing the TV. I had to explain to Ellie that the chemo made it so that some things would be harder to hear from now on. I was surprised that it was so noticeable to her. She has also had a lot of ringing in her ears. This morning she told me that it sounds like little crickets in her ears, and she asked if it would ever go away. I don't know the answer to that question, but I intend to find out. What bothers me the most, is that we have to go through these same drugs for round 5. If the hearing damage was this significant the first time, what will it be next time? I know, I can't worry about that today! O.k., I'm back now. Today is a good day...she's bouncing around and smiling...and I'll take that!

Ellie playing a game with her Uncle Michael:

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I hope all of you are having a good Sunday...wherever you are and whatever you're doing. Thanks so much for your love and prayers!

Friday, December 15, 2006

Home at Last!

We are home from the hospital! Round three of chemo is over and we are back home in our own beds tonight. It has been a full day. Ellie threw up on the way home, but has been feeling much better for most of the day. She has had some yucky moments, but I am very pleased over all how well she's feeling. Ellie is happy to be in her room and with her fish again. Our house is still under construction in some areas, but it is more liveable than before, so we are able to be back. Our bed is in the living room, but it's my bed and I'm so happy to see it...I don't care where it is! I'm sure I'll have more to report tomorrow, but for now we are happy and home. (Except Ethan...he can't come home until we're sure he's over the chickenpox. Even though Ellie just had them, her immune system is about to bottom out completely and there is a very real risk of re-infection or the possibility getting shingles.) So...we miss our little buddy, but very soon we will all be together in our little house...for Christmas!

Thursday, December 14, 2006

Midnight...and All is Well...

I should be sleeping, but we have just had a really sweet evening...and it's just hard to let those times end. Ellie did have a hard time for a while, and she did throw up, but then was able to get little bits of food in. She fell asleep for a while, then woke up and we ended up watching a "Celtic Woman" special on TV. These beautiful women singing beautiful Celtic songs lulled Ellie back to sleep in my arms. She is now sleeping peacefully while the etherial, almost haunting melodies fill the room.

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Love to all and goodnight.

Hanging in there...

Just a quick note to let you know that, as of early this afternoon, Ellie is holding her own...and holding food down! She's not doing cartwheels around the room or anything, and it's not been the easiest day...but she is hanging in there. Kathy changed the dressing on her broviak this morning, so that hard thing is out of the way. Ellie's stomach has hurt almost continually today, but she keeps taking in small bits of food, and she had maybe a half hour where she was sitting up and smiling. She is right this minute curled up in a ball sleeping next to me on the bed. (The half hour of happy time wore her out.) Again I am amazed at how easy it is to rest in God minute to minute as I put one foot in front of the other... and pretty soon a whole day is over and we made it through!

Mom called just a while ago - she and Gary have Ethan for a couple of days - and she said that Ethan is just cracking her up.

Ethan came in the room with a baby doll and said “Gramma, I’m her daddy. I’m gunna fight Papa but I won’t die ‘cause Papa’s an old daddy.”
Gary walks in the room and Ethan says, “I’m her daddy and you’re an old daddy.”
Gary: “Well, do you know what an old daddy is called?”
Ethan: “No.”
Gary: “Papa! or sometimes Papi!”
Ethan: “Okay, come on, let’s fight.”

Another one from today:
“Gramma, I did something very bad, but it’s under control.”

Ahhh...life with a four-year-old!

Wednesday, December 13, 2006

The Long Day is Over...

Today was not so bad, but things were always in a kind of precarious balance with Ellie. She slept quite a bit, but in between she had a lot of stomach pain and some nausea. When we timed the food and drink just right - the right things at the right time - she would perk up and do better for a while, but then kind of crash again. I was able to get a nap in the evening (as I didn't sleep much last night) and then when John and Kathy (John's aunt who is a Nurse Practitioner...for the time being our OWN PERSONAL Nurse Practitioner!) came over I went to the Ronald McDonald house to get a bath. Stan and Pat came over for a visit after being out for Pat's birthday (happy birthday, my sweet mother-in-law!). Ellie gave gifts to her "Bubbie" that she had picked out herself from the gift shop downstairs (and wrapped herself). While I was away, Ellie threw up for the first time this chemo. Looking back, I can see that she could feel it coming on all day...she has such great intuition about her own body. She got some medication to help with the nausea, and was able to eat a little bit more after throwing up, and now she's sleeping quite peacefully. Kathy will be in the room for a couple of hours this evening, so John and I will be able to get a chunk of uniterrupted sleep. (We can both sleep through anything, but I will wake up if the kids need me...so having Kathy in the room will allow me to get a chunk of deep sleep.)

Tonight, my prayer again is that God would protect me from the worry about tomorrow. I talked with the parents of a little boy here who also has neuroblastoma, and started chemo just before Ellie. He is now a whole cycle ahead (because Ellie lost time with the chickenpox), so we are able to learn alot from his experiences. Apparently, cycle three (the one Ellie is on) was extremely hard on Carson. He threw up every day for at least 10 days AFTER chemo and lost 5 pounds. I find that there is such a balance between being prepared for what is to come, and worrying about all of the details. It is very nice to have a head's up about what could be on the horizon, because when it comes like a two-by-four to the back of the head, there's always some recovery time while you collect yourself and get over the shock of the ordeal. Knowing the worst case scenario allows for preparation and the ability to meet things head on with expectation. That's all well and good... but it's when I take it to the next level and worry about the days on end of intense nausea and weight loss that I realize that I have just stepped out of the place where I should be...living in the grace that is mine for this moment. I continually see God allowing me to look into the possibilities that tommorow may bring so that I can be prepared, but then bringing me back to live in the grace for today. God is so good to me - He's never harsh with me, always the tender shepherd who gently leads those who have young - he just quietly reminds me to be still and know that He is God...that His grace really IS sufficient for today...and that His grace will be there tomorrow - and He does it over and over again. I wish that I was that patient with my children...

It is late, and for now I must sleep. I hope you all have a good night (or day for those of you around the world!). Thank you for your love and prayers...we will sleep peacefully tonight because of them.

Tuesday, December 12, 2006

The End of Day 2

Ellie is sleeping like an angel...it is a drug-induced sleep, but for tonight I will take it. She did beautifully all day - I was so pleased - but by bedtime, her stomach hurt so badly that we had to give her something for the pain and nausea. I'm starting to get a little nervous about the next couple of days. Day three of chemo starts at three in the morning and I'm afraid that we will see more of the cumulative effects of the drugs. Again, no matter what tomorrow brings, we have still had two good eating days...and for that I am thankful! I guess I'm getting ahead of myself agian - I will wait for tomorrow...and the grace that will come when we get there.

Ellie's Painting Adventure

While not strictly "quarrentined" Ellie is still not supposed to come into direct contact with other patients, but she was allowed out of the room with a mask on. Someone periodically draws pictures on the windows of the playroom for the kids to paint, so Ellie was able to have some fun on her outing.

The artist at work:

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The finished masterpiece:

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Home Sweet Hospital

So far Ellie is doing well today. Things were a bit dicey this morning, but she feels better as the day progresses...and she's still eating! I just cannot tell you how thankful I am for that. I thought you might like to see our room, so I'm including some pictures. (We have the big room again, as everyone is still nervous about Ellie's recent chickenpox.)

The tour starts looking in from the door and goes around the room counterclockwise. The only thing to the right of the door is the bathroom.

Ellie taking a morning nap in her pretty bed:

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Ellie's pink Christmas tree and my little "computer station":

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The view from our window:

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My "pantry", complete with a fridge (at the bottom of the picture):

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Our couch/bed:

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Monday, December 11, 2006

End of the Day...

Thought I'd post again today...after the initial nausea this morning, Ellie took a nap, then woke up and began EATING very well. She continued eating and had good energy all day. She even took one dose of her antibiotic without incident! The day has gone so much better than I expected. The nurse did say that one of these chemo drugs in partiuclar is pretty nasty, and can have a cumulative effect...so each day could get worse. I am thankful that today we didn't have to give her any anti-nausea medication (she received two just before the middle of the night chemo infusions began, and then no more) so that gives us somewhere to go should the nausea get unbearable over the next several days. For today I am thankful that Ellie has eaten well and kept everything down...that's one more day of not loosing weight! Thanks so much for praying - please pray that even when she doesn't feel well, that Ellie can at least get something down and not get into the downward spiral of vomitting and loosing weight. Thanks so much.

I talked to Ethan this evening and he sounds good. Stan and Pat said that he slept pretty well last night and has had a good day, so I'm happy. Mom came to the hospital today so I was able to get a two hour nap!! I feel so much better, but still tired. It will take a while to catch up from all of the missed sleep of late. John went home this morning and worked on our house. We're hoping to be able to go to our house after this trip to the hospital, so John's trying to work on it as much as possible, but still spend evenings with us at the hospital.

I hope you all are having a wonderful evening with those you love. If you have children, or are around children that you love, please pay special attention to their laughter...I think that there is no sweeter sound in the whole world! It's just something that I didn't give much thought to before, but now the sound makes me stop and smile in a way that I never used to. John has made it his goal to make Ellie laugh as often as possible, and I love that! He's so conscious of such things, and I love him for it.

Round Three has Begun!

Sorry for the lapse in posting. It's been a busy couple of days between Ethan's chickenpox and packing for the hospital...

We arrived at the hospital late last night and settled in. Chemo started around 3:00 a.m., and both medicines were finished by around 6:00 a.m. This will be the routine for three days, then there will be one medicine on day 4. Each day, following the early morning chemo infusions, Ellie will be given large amounts of fluids to flush out the drugs. This morning she had a hearing test to establish a baseline for comparison, as one of these drugs will almost certainly cause a decrease in her hearing. Supposedly the hearing that Ellie will loose is in the higher ranges and they say she shouldn't miss it or be much effected by it...I suppose it's kind of like loosing the sight in one eye...at least she has another one... Sorry, I'm really not intending to sound sarcastic - I'm incredibly sleep deprived right now, and just have that funny feeling in the pit of my stomach that permanent things are happening. I'm not really discouraged, just sobered at the thought of first vision loss, then hearing, and then there's the fact that her heart will need to be monitored for the rest of her life because of the chemo, and the hope that her kidneys will make it through... It's a hard pill to swallow that the very thing that is supposed to save her life is destroying pieces of her body (of course the vision loss was the cancer's doing). As of this morning, Ellie is experiencing some nausea, but she has kept everything down. I've discovered that Ellie is very good at knowing exactly what her body needs at times like this, so we try to give her the things that sound good to her and so far it seems to be working. She is also on a couple of medications for nausea, so everything is kept at a dull roar. The biggest trick for the day is going to be getting her oral antibiotic in. (She has to take an antibiotic twice a day on every Saturday, Sunday, and Monday to keep her from getting a certain kind of pneumonia.)

On a lighter note...Ellie was able to go with her Daddy and Papi (John's dad) to watch the space shuttle go up on Saturday night. (Because of Ethan's chickenpox, Pat and I watched the launch with him on TV, but we were able to run outside and see it above the house off in the distance.) Stan, John and Ellie went out on Thursday night, but the launch was scrubbed. Saturday went beautifully! The last night launch from Cape Canaveral was when Ellie was four and I was pregnant with Ethan. We went to that one as well. We have taken both kids to daytime launches, but there is nothing like seing a night launch. Ellie was SO excited! They went in Stan's truck, and made a comfy bed in the back (there is a camper shell on the truck) so that Ellie could stay warm while watching the launch. John caught her reaction on a video clip, so I've included it here for your enjoyment. I wasn't there, so I've watched and re-watched this clip. Seeing her pure joy and excitement brings such happiness to my heart and I hope it will do the same to yours!

I will keep you posted on how Ellie progresses through the chemo. Thanks so much for your love and prayers - they mean the world to us!

Friday, December 08, 2006

Not much to tell...

Just a quick note to say that Ellie has been doing great! She's eating very well and slowly gaining a little weight. We're hoping that she will be well prepared for Monday's chemo.

Ethan is miserable with the chickenpox. We had a mostly sleepless night last night, and he's just as unhappy today. I think that there is one in his mouth and one on the inside of one eyelid. It makes for a a very uncomfortable little boy! Tonight as I was bathing Ethan, I was struck again with how different children within the same family can be. You know how as parents you say that you would be more than willing to take away your child's pain for them if you could? Well Ellie takes great comfort in that sentiment. Since she has heard both John and me express that feeling, she will sometimes even ask if we would go through something for her if we could. Well, tonight I tried that on Ethan. He was sitting the bath tub and he sharply looked up at me when I said it and replied "you mean chickenpox on YOUR body?" When I said yes, he burst into tears and said "NO, not THAT!!" I couldn't believe it. Somehow the thought was just more than he could bear. Well, he's finally asleep, so maybe there's hope for a little more sleep all around tonight.

Thanks to all for praying. I will keep you informed on any changes or things of interest. Tonight I'm too tired to think of anything interesting...I just keep thinking about sleep. :-)

Sweet dreams to all...(maybe even me)

Wednesday, December 06, 2006

Good News...

Today we got the results from Ellie's CT Scan...her tumor has shrunk! Welcome to the rollercoaster ride that is our life. I finally prepare you for the worst and then something good happens. (Aren't rollercoasters supposed to be fun? Are you having fun yet? I think I've reached the point where I can't stop spinning and I'm feeling kind of nauseous...) I don't have the full report yet, but I did hear that there is improvement. We are so pleased. I really was gearing up to hear bad news because of the symptoms we have been seeing, but now I wonder if this is just because her body has gone too long without the chemo continuing to shrink the tumors even further. Whatever the reasons - tonight we are thankful! The doctor said that the test on the thing that she blew out of her nose did not indicate anything other than nasal mucus, etc. And the sample from one of her chickenpox (from the day of her bone marrows) showed no signs of the chickenpox virus. That was confusing to us, but I guess maybe it just means that her body has finished off the virus (even though all of the blisters were not broken). Oh well, some things just don't always make sense. Ellie has felt very well today and has only two or three more blisters left unopened on her feet. We are supposed to check into the hospital on Sunday night and gear up for chemo round three on Monday. I can't believe I'm actually saying that I'm thankful that chemo will be starting, but I am!

Today is Ethan's actual birthday, and for his birthday he got...CHICKENPOX! Oh yes, he is starting to break out and has a fever today. Today is exactly five weeks from the time Ellie developed her first blister. While I am thankful that Ethan can get them over with, I am just SO tired of chickenpox! I don't ever want to see another pox for as long as I live. Since we had already celebrated Ethan's birthday, he spent the day at Mom and Gary's house to have another celebration with them. By the time he got home, Mom said that he definitely wasn't feeling so perky today and when Ethan saw me he said "This birthday boy isn't feeling so good. His body is kinda sick." The boy turns four and no longer speaks in first person?! What is that about? He certainly keeps us laughing. The other day Stan showed Ethan a real alligator head that he had purchased. I had no idea how Ethan would react (scream, run, beat it with a stick...) but apparently he looked at the thing and dryly commented (in a fake southern drawl) "he aint feeling so good!" I think that he is quoting Veggie Tales "Larry Boy and the Rumor Weed". What a nut. Even at four, he has a great sense of comedic timing.

Well, thank you for sharing this crazy ride with us...I should have prepared you before you got on...this ride even goes upside down sometimes...

I leave you tonight to savor the good news and join in our thanksgiving. I am so thankful for these moments of reprieve when we can take a breath and feel some tension drain away for a short time. We love you all!

Tuesday, December 05, 2006

Thank you all for your sweet response to last night's email! Your love and prayers make all the difference in how we are able to get through the days.

Today was a good day. Ellie did great during the CT scans. We won't know until tomorrow what the results are. I will hopefully be able to give a detailed update tomorrow.

Monday, December 04, 2006

Answers...and more Questions...

Today we got the results from Ellie's bone marrow biopsies. There is still neuroblastoma present in Ellie's bone marrow, but apparently the cells are maturing. Contrary to how this sounds, it is a good thing. Cancer cells are very immature, so signs of maturation mean positive change. We are thankful for that much, as I was truly not surprised to hear that there is still disease present. We have been seeing enough signs lately to indicate that the cancer is still at work in Ellie's body. Tomorrow we will take Ellie in to the hospital for CT scans of her head to check on the tumor there. It would be lengthy to describe all of the reasons for our concerns, but in a nutshell: Ellie has lately had some pain in her legs (similar to, but not as severe as the pain before we discovered the cancer) and there is a good deal of pressure in her nose. One night during this past week (when I thought she was developing a cold) Ellie blew her nose and something came out. Sorry if this sounds gross, but it looked different from anything I had ever seen - the best way to describe it is "tissue". Ellie has also had some mental/emotional changes lately similar to those before her diagnosis. I was begining to suspect that the cancer was growing, but the results of the bone marrows is a little encouraging to me. Hopefully after tomorrow we will have a better idea of what is going on in Ellie's body. After the CT scans, we have an appointment with Ellie's doctor to check on her chickenpox and determine when the third course of chemo will start. I will try to get an update out to you all as soon as I know more information.

I have been kind of waiting for the best opportunity to fill everyone in on what we have come to realize is the most accurate prognosis for Ellie. When we first heard that she had neuroblastoma, we thought that she had about a 50% chance of survival. We have later come to learn that that is the average for children diagnosed with neuroblastoma, but that it is more complicated than that. Most of the children diagnosed are very young, and the younger the child, the better their chances are. Children under 2 years old have the best prognosis; next are children between 2 and 5 years old. There are MUCH fewer children over 5 even diagnosed with neuroblastoma, and their chances of survival are somewhere between 20% and 30%. Some children have a type of neuroblastoma that is resistent to treatment and can even grow during chemo. Those children have about a 10% chance of survival. We do not know if Ellie falls into that catagory. A big problem with this disease is that it is tricky and adaptable and has a high rate of relapse. In Ellie's particular case, the cancer has metastesized to quite a few bones throughout her body - I don't have an exact count, but it is in the neighborhood of 20. I wanted to explain this because I didn't want it to come as a complete shock to everyone if things do not always go well, or as expected. We have been gradually absorbing this information over the past couple of months, and I realized that I hadn't been sharing all that we were learning. I've not been intentionally holding back, but it has been a very overwhelming realization to come to that the "odds" truly are against us.

This being said, I do know that if, say 25% of children like Ellie make it, then that means that some DO make it. I also know that God cannot be factored into the percentages. We have by no means lost hope. We have every reason to fight and persist and stay hopeful and encouraged simply because we have a precious LIVING little girl who wants to continue living. And now that being said...I also know that there are no guarantees. I do not have a deep down knowledge or belief that Ellie is going to make it - I simply konw that God truly is enough for us whether she lives or whether she dies, and I know that no matter what...God is GOOD. And I know that the worthiness of a life is not measured in the quantity of years a person lives. My grandest dream for my children is that their lives would somehow bring glory to God. If God accomplishes that in Ellie in her young life, then her life will truly be as "full" as I could ever hope for. I cannot hold her in clenched hands, because I truly do not hold her at all. Ellie's life - body and soul are already held tenderly in the hands of God. I cannot ask for anything more than that - all I can do is wait...and trust. That doesn't mean that it doesn't hurt - I have cried so many tears because I want to keep Ellie with us - but it does mean that my heart is at peace...the kind that truly passes all understanding. I am so thankful to God that He has done this work in my heart, for it truly is His and not my own.

I pray that the God of all comfort will be with you all tonight, for I know that you have taken Ellie into your hearts and lives as well. Some of the words of another Twila Paris song just popped into my head: "Every heart that is breaking tonight is the heart of a child that He holds in his sight. Oh how He longs, to hold in his arms, every heart that is breaking tonight."

Sunday, December 03, 2006

The Christmas Tree!

When we arrived home (to Stan & Pat's - we are still staying there) from the hospital after Ellie's bone marrow biopsies, Jill had set up a beautiful live Christmas tree - complete with colored lights (Ellie's favorite). I asked if Jill would leave the ornaments off of the tree so that we could look at each one and see who they were from. Ellie and I spent the rest of the day looking the ornaments and appreciating each and every one! It was amazing. I have known that there are so many people praying for Ellie and our family, but watching the tree fill up with tangible expressions of love was overwhelming and touching in a way that I just didn't expect. Having looked carefully at each ornament, now when I pass the tree, one or two will catch my attention and I will think of the person who gave it. Everytime I look at the tree I see the love of each one of you. One of the things that amazed me the most was how vastly different each ornament was. There were exquisitely handcrafted ornaments, extravagent store-bought ones, some made with children's hands, others made together by a whole multi-generational family at Thanksgiving, many bought with a little 8 year old girl in mind, one that had been on a family's tree for many years, and several that were made in and sent from other countries. I don't think that I will ever be able to express to you all how happy this tree has made our whole family - watching Ellie's delight as she admired and examined each precious ornament was a priceless gift for a mother's heart. Thank you all.

Following are pictures of the tree from several angles. You won't be able to see each ornament because there were so many and some were heavy and had to be placed deeper in the tree.

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Saturday, December 02, 2006

Some Miscellaneous Family Pictures...

Ellie and her cousin, Maddie Harris:

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Ellie and Ethan pretending to be motorcycle riders:

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Mommy and Ellie at the Ballet (eyes closed, aghhh):

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Daddy and his little ones:

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Ethan's Birthday

My little guy's turning 4 on Wednesday, and I can hardly believe he's getting to be such a big boy! He's such a funny little bundle of energy. I just love him so much! We weren't sure if we would be back in the hospital on his birthday, so we had a party a few nights ago.

Ethan David Skees:

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At Dinner:

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An Extra Special Ballet for Ellie

Thursday night we were able to go with Ellie to a ballet! We have friends who have two teenage daughters who are exquisite ballerinas. For several years we have attended their ballets - it has become somthing of a tradition. This year, their company invited Ellie (and her family) to a private showing of "The Nutcracker". We were able to attend their dress rehearsal, as the only ones in the audience! It was WONDERFUL! We didn't have to worry about being with a bunch of other people (and their germs) or expose anyone else to Ellie's chickenpox. And as we watched, it felt like all of these amazing dancers were dancing their hearts out just for Ellie. Ellie had been looking forward to it for several weeks, and as the date got closer we were afraid that she would miss it, but everything came together perfectly.

The Ballerinas:
Lindsey Bell, Lauren Bell, and Friend (I'm so sorry, I don't know her name)

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The Ballerinas with their biggest fan

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Ellie and Santa

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Ethan and Santa

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Our Family....and Santa!

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Friday, December 01, 2006

Been too Busy to Post...

It has been hard to get updates out often, as each day seems busier than the next! Sometimes I will start an entry, then not be able to finish it before the next day, then something will change or there will be more to add...you get the idea.

Basically, even tonight I am too tired to give a long update - last night I was thrilled to finally get 5 hours of sleep! Still, it wasn't enough to leave me well rested and as of now, I can hardly see straight. The nights have been terribly uncomfortable for Ellie, and so sleep has been hard to come by all around.

Today Ellie had her bone marrow biopsies. She did great! She was a little sore at first, but by the time we got home she was as perky as could be and by the end of the day was bouncing off the walls. We haven't gotten the results back yet.

I have so many things to update you on...and have lots of pictures! I want to be able to devote some time to it, so tomorrow I plan on getting you all of the details. Sneak peak at what's to come: Family pictures, Ethan's fourth birthday party, a VERY special ballet, and YOUR CHRISTMAS TREE! I will try to get it all out there tomorrow, but since there is so much to "show and tell" I'll do it in several posts...so keep checking...

Thanks for your patience - and interest. Lots of love, and goodnight.