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.

Monday, November 27, 2006

The Month of Chickenpox Continues...

Sorry I haven't written in several days. I went away on Saturday - it was nice to "get away from it all..." A friend took me out for a pedicure and manicure and lunch - it was WONDERFUL! Then out with another friend for a little shopping...a little eating...o.k., fine - a lot of eating... Other than a reprieve now and then, the days have been busy and full, and the nights long.

For the last several nights, Ellie's chickenpox has reached unbearable levels of itching. During the daytime it's manageable, but at night she's miserable. One night she only got 3 hours of sleep. Yesterday we took Ellie back to the doctor and he postponed the bone marrow biopsies until Friday (which I was hoping for!). He was very surprised to see this second outbreak of chickenpox. (I really think that it's the end of the first outbreak...just delayed.) The bulk of the pox this time are on her extremeties which is often how chickenpox ends. Unfortunately the worst of Ellie's are on the soles of her feet, so she is getting very uncomfortable.

Ellie does seem to be catching a cold, and yesterday we were all feeling a little discouraged. The cancer itself is such a big looming thing to deal with, then you add onto that the chickenpox, then throw in a cold for good measure and the pressure just keeps mounting. I got a wakeup call yesterday when Ellie came to me and asked if she would die if she got chemo while she has a cold or the chickenpox. I felt like I was watching a giant snowball (of worry and anxiety) rolling and bouncing down a hill gathering more snow on it's way, threatening to engulf us all on it's descent. So I did what any self-respecting mother would do to protect those she loves - I threw a brick wall in it's path. First I explained to Ellie that our main concern was that we didn't want sickness to keep postponing chemo - not that we were worried that she would die because of it. Then I told her that today we aren't concerned about the cancer at all. Today is not about fighting cancer and taking chemo - today is about the chickenpox. There are many many kids out there with the chickenpox - and it feels rotten - it's itchy and miserable and today we just have to get through that. Today she is just an 8 year old with itchy bumps and a runny nose. I literally felt the anxiety drain away from Ellie's body as we talked, and a funny thing happened...I felt mine do the same. Snippets of verses from Matthew chapter 6 seem to be re-playing in my head: verse 27 "Can all your worries add a single moment to your life?" (I don't think that God would mind if I mentally add "your child's life" to the verse) and verse 34 "So don't worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today." And so even though I'm tired and emotionally spent, God's grace really is enough for today. And I don't have to worry about tomorrow because God's grace will be there when I get there. The other thing that I am sure of is that I will forget this and start to worry again. I only hope that next time I will hear God's voice in my ear sooner and throw a brick at the snowball while it's still tiny and at the top of the hill! (Yes, I do know that I live in Florida, but Christmas is coming and I've gotta get in the mood somehow...thinking cold sometimes does the trick.)

I hope you all are doing well tonight - I'm sure each one of you has your own struggles and heartaches. I wish that I could pray for each of yours the way that you have for mine, but please know that I am praying that God will wrap His loving arms around each of you and bless you greatly as He has with us. Thanks for all of your prayers and concern for us. Ellie definitely knows that she is well loved!

Friday, November 24, 2006

A Prayer Request...

It has been another fairly uneventful day, but I did have one concern...Ellie has started sneezing today and I'm hoping that it doesn't turn into a cold or other illness. There are several bad bugs going around right now - bad for healthy people with good immune systems, so we are nervous about Ellie catching something. We've been extremely careful about letting people see Ellie because of that, but stuff is in the air... Please pray that she doesn't catch something, especially before the chickenpox are over - it would be nice to only deal with one thing at a time, and chemo is already very behind schedule! Thanks so much.

Wednesday, November 22, 2006

Life is Good

Just a quick note: It's been a good day, and the report from the clinic is that most of her blood levels are on the rise...slowly, but definitely going up. We're keeping an eye on the hemoglobin - it's the only one that went down a bit, but her energy has been decent so I'm hopeful that the hemoglobin will start the upward trend soon.

I'm going out tonight for a nice dinner with my husband - I must take my new hairdo out for a spin...all this good hair cannot go to waste! I must go now and make myself beautiful...sigh, it's such a chore to get dressed up and go out...you know how I hate that :-) I'm so excited to be getting out with John!

Have a wonderful evening.

Tuesday, November 21, 2006


Well, today's hairstyling did not disappoint! A good hairdo can make you feel like you've lost weight and years all at the same time...so what's not to like. Plus I always enjoy seeing Cece - my good friend (and hair-stylist of 10 plus years). We laughed and cried...who needs therapy when you have friends like that?

I returned home in time to take Ellie to her clinic appointment for lab work. There were some red dots on the palms of her hands that I had the Dr. check out while we were there. Since they were just on the palms of her hands, I wasn't completely sure that they were still the chickenpox. He said to keep an eye on them. They scheduled Ellie to go to the hospital on Monday to have her bone marrow biopsies and more lab work. After that they will determine when the next chemo round is, and when we should go to Jacksonville to meet with the doctor up there. (So my answer about the rest of this week is that it's free from appointments.) After we returned home this evening, I checked Ellie out from head to toe and discovered little red dots all over her arms and legs! So I guess the chickenpox aren't done. I wanted to throw my head back and just scream. I didn't, of course, but I can't help wondering what everyone would have done if I had. (Sometimes my little flights of immagination are quite entertaining.) My hope is that this is just the chickenpox finishing it's course. The majority of Ellie's bumps were on her trunk and head, so I think that it stands to reason that it's ending on her extremeties. I hope that her white count is up enough to let her own body take care of it. We will find out tomorrow what her blood levels are at. If she ends up back in the hospital on the antiviral medication, all of her levels will probably drop again and then we will have to wait until they go back up again before the next chemo. It's also my opinion that the medication makes her feel badly and loose her appetite - especially on the higher dosages. But, if her body can't handle the chickenpox, or can't get rid of them and they keep cycling back through, then we have no choice. It's so frustrating.

Still, take heart...if you had been able to peek in our windows tonight you would have seen two little banshees running through the house laughing and yelling, trying to get away from the mommy monster (oh yes, I was roaring and clawing at doors and jumping out at them...you cannot even imagine the sight). Then came the task of corraling the two little whirling dirvishes and depositing them in bed. Finally, they were both down, all was calm and Ethan poked his head up and said "I'm hungry." Ellie immediately responded that she was too, and of course I can't deny HER food. After another silent mental scream, I stomped out to the living room with both kids and dumped them onto the couch with their father. I nearly threw their snacks at them and turned to the computer for refuge...so here I am. It's been a rollercoaster ride of a day and I'm beat. The really sad part is, that compared to my mother-in-law I've done nothing today. Somehow she managed to feed the kids, do laundry, clean up the kitchen and bathe Ethan all in one day. She also continued to feed Ellie (for an hour!) after I fled the living room tonight. I think that she must have superhuman strength because feeding and bathing the kids in the very same day is a feat that I have rarely been able to accomplish - never mind the laundry!

I am so very thankful for all of our family and friends who have stepped in and have taken care of the many details of life for us so that we can concentrate on taking care of Ellie - and even that we need help with. So many days I am exhaused without really doing any work at all, and I find myself thanking God from the bottom of my heart that we aren't in this alone...and I just hope that we don't use everyone up! So while you are praying for us, please remember those who are holding us up each and every day in thousands of little and big ways. Please pray that they would have strength and energy and that God would give them the breaks that they need. And thank you SO MUCH for the part that you play in our lives. Your love and prayers are every bit as important in our daily battle as those who are doing the practical day to day tasks. (Of course many of you reading this fall into both catagories.) I try to express it as often as I can, but I just don't know if we will ever be able to truly convey how deeply touched we are by each one of you. We pray that God will bless you beyond measure...in ways that you have yet to imagine.

Perhaps tomorrow, if I can find out how to do it on this computer, there will be less words...more PICTURES! I shall try.

Monday, November 20, 2006

Every Day Together is a Good Day

Today was nice and calm. I was able to sort through all of the stuff we brought home from the hospital and repack most of it for the next round. The kids had a good day hanging out around the house, and John worked all day. We ended up eating Thanksgiving dinner tonight since we had so much fun yesterday that none of us felt like putting on a feast at the end of the day. It all worked out perfectly! I found myself thankful to have just one more day with those I love.

This week is kind of up-in-the-air. I have no idea what to expect from one day to the next. We are supposed to take Ellie in to the clinic to get her blood levels checked, but we don't know which day. We are supposed to go up to Jacksonville to meet with a doctor, but we don't know which day that is either. (This appointment is just a meeting, but it's regarding Ellie's stem cell harvest - to transplant back into her at the end of chemo. Once the bone marrow biopsies show no signs of disease, we will be sent to Jacksonville to have a different cathader put into Ellie's chest from which her stem cells will be harvested. Ellie's doctors hope that this next biopsy will give us good news because the farther we get from the beginning of chemo, the more difficult it is to get enough stem cells to transplant.) Of course this week is Thanksgiving... Basically we have no idea how this week will go or when we will be back in the hospital for chemo round three.

The only thing I know for sure is that I have a hair appointment tommorow...and I'm keeping it! We all know that no matter what life throws at us, a girl's gotta have good hair. Seriously, all of you women out there know what I'm talking about - it's impossible to be thoroughly discouraged when you have great hair. And all of you men who are staring blankly at your computer screen, wondering what on earth I'm rambling on about and wishing I would just get to the facts - take note: your wife's hair is to her like an outfit that she has to wear each and every day...the SAME outfit...EVERY day...see where I'm going with this? Like I said before - a girl's gotta have good hair. O.k., climbing off my soap box...big deep breath...I'm good now.

I will let you know if anything new or interesting happens tomorrow. Well, I will be blonder and much more gorgeous tomorrow, so I doubt I'll really care if there is anything new to report.

As always, thanking God each time I think of you all.
Love, Sarah

Sunday, November 19, 2006

For Your Entertainment...

A few of Ethan's constant questions (since yesterday):

"Are you old, Mommy?"... um, well, older than you... "So you're old?" ...well, kind of..."You ARE old!"
"Are you as strong as an anaconda?"
"Is Ellie sick, but I'm not sick?"
"Do babies stay warm in their mommy's tummies?"
"What does 'it's a deal' mean?"
"Would I drown if I kept my head under the water for long?"
"Will you buy me a present at the store if I go poopy on the poty?"
"Would you die if you were fighting with tigers, Mommy?"
"Are you stronger than God, Mommy?"
"What does 'in a few more minutes' mean?"

Mommy's question: "So whatever happened to good old fashioned 'WHY?'...sigh...those were the good old days..."

Today is Thanksgiving Day in the Skees Household

Hi again. (In case I have thrown you all off - I'm a night owl by nature so I generally post late at night, but now that we are in a different routine, morning seems to be my new schedule.) I thought I wouldn't be posting this weekend, but I just couldn't stay away. Before Ellie had cancer we just used to go from day to day and live our lives - often missing so many little special things. Now I find that as I live, I'm filing away little tidbits to recount to you all later. I'm starting to pay more attention to the little things and view our life through your eyes.

These days John and I have existed trying to meet whichever need seems the greatest - be at the hospital with Ellie; play with Ethan; and for John it's been the juggling act of work, drive to the hospital, drive to Ethan, bring stuff, meet my emotional needs...and often fall into an exhausted sleep next to me on a twin sized hospital cot. Yesterday I could see the wear of the past two weeks all over his face after he finished doing some work in the morning and was at our house preparing to come to his parents house and do battle with Ethan. I brought John some coffee and realized that the biggest need in our family right now was his. I drove back to Stan and Pat's and said "as long as you guys are doing fine here, I think that we will just see you around supper time..." and that's exactly what we did. I never thought that spending time with John would be such a luxury - I used to take it for granted. I've always enjoyed leaving the kids and taking time for ourselves - it seemed even before that it was never enough. Now, even though it was just one afternoon, we gratefully enjoyed every moment of being together. We borrowed Stan's motorcyle and went for a long ride. Years ago we had a motorcycle and used to enjoy taking long rides, and this time it felt like the years just melted away as we rode. The weather has FINALLY turned cool, so it was just perfect!

As we rode, I couldn't shake the feeling that riding the motorcycle felt so much like life. When I started riding with John years ago I had a lot of trouble in the turns. When the bike would lean, every impulse in me was to fight it. I would get this horrible feeling in the pit of my stomach that the bike was going to just tip right over. I knew in my head that John was a great driver and there was no way that he would let me fall, but my stomach disagreed! I finally figured it out. If I would lean close to John, lead with my head in the direction of the turn (sometimes even close my eyes), and just leave it in John's hands, all would be well. It struck me on this particular ride that when difficult things happen, all I have to do is lean so close to God that I can hear his hearbeat and when things feel really wrong just lead with my head!

O.K, I'm done waxing philisophical (sometimes I just can't help myself). Today's agenda is a little church service with the family and Thanksgiving dinner. The day is already off to a great start - the kids woke us up and we had a family snuggle in bed (although, as John says, with Ethan it's like snuggling a washing machine).

I hope you all have a happy Thanksgiving. Today I am thankful that we do not have to go through the struggles of life alone - that we have all of you to share in our burdens and our joys! Thank you.

Saturday, November 18, 2006

Fun Family Time

Hi Everyone! Just wanted to send out a quick note that we've been having a wonderful time away from the hospital! It has been great just to be with family. Ellie is eating and drinking very well considering that she was just unhooked from her fluids and has come off of two days with very little food. I was a little concerned about that since it is very hard to push both enough food and drink at the same time. So far so good. Aunt Ginger is making each meal an event - so far we've had a pizza luau for supper (umbrella straws and all); popcorn movie night; and are just about to embark upon cartoon breakfast (compltete with new cartoon themed dishes and silverware for the kids). And that's just what's happened so far!

It has been good to spend time with Ethan as well, but he's having a bit of a hard time figuring out which end is up. Mommy and Daddy are back, but we're not home so that is different. He's trying to find the right groove, but it's more of and adjustment for him than anyone.

I've got to get to breakfast - Papi's special pancakes are almost ready. I hope you are all having a wonderful weekend! Love, Sarah

Thursday, November 16, 2006

Hopefully going Home...

Although Ellie still had little appetite today, she awoke much perkier than yesterday. It was good to see her up and around - making craft projects and talking with the doctors and nurses...well talking to them is a bit of an understatement -it's more like the desperate chatter of a severely cooped up little girl. I'm telling you, the child must be at least 15 years old for all of the words that she must get out of her system in a day! I've finally had to step in and say "sweetie, you have to let the doctor go - he's a very busy man..." or she would have kept him here all day. I do feel for her though. I'm afraid that I'm not very much fun to be around 24-7. Also when she's feeling good, she's a typical little girl with attitudes that need to be checked and so mommy is not always her favorite person. I also wish that I could say that I was patient today...I was not. Today was just one of those days when everything irritated me. I hate it when that happens - every little thing that Ellie did was like sandpaper on my nerves. That makes it harder because there were times that I really did need to deal with her attitudes or behavior, but I was already irritated over the little things. We made it through anyway. She asked me at bedtime why I was so grouchy, so I appologised then snuggled and sang her to sleep. I think that even off days like today make her feel secure - her world cannot be totally falling apart if things aren't all that different from home...grouchy mommy and all.

Well, when the doctor checked Ellie out, he said (when he could get a word in) that it looks like her bout with the chickenpox is ending! Yipee! Then we got word that she can go home tomorrow (unless something changes between now and then). We may only have the weekend before chemo starts, but we'll take what we can get. I have to admit that my first inclination was disappointment because I am totally set up and comfortable in this room, and the idea of packing up, going home and unpacking, then re-packing for the return trip and then setting up a new room just sounded exhausting. But looking at it through Ellie's eyes completely changes the perspective and I am thrilled for her to get out. Now I am totally excited because we are going to stay with Stan and Pat (John's parents) for the weekend and have an early Thanksgiving with them and Ginger, Russ and Maddie (John's sister and family) and Ethan of course will be there. Our plan is to eat and play and rest and just be together!

The update on my family (for those of you who know them and are wondering about them) is that things are a little crazy right now. My Grandma Jean just went to the hospital today with possible pneumonia. (Grandpa Jim and Mom were there at the hospital with her.) I haven't heard whether pneumonia's confirmed yet or if anything else is wrong. My step-sister, Jenn and her husband Jim just left for China this morning to pick up their new daughter, Emma. We have been waiting for this adoption to take place for well over a year now, and we're so excited that she's finally coming! While they are away, Mom and Gary are watching their other two daughters, Mady and Libby. My Aunt Donna lives several hours away, so we don't get to see her nearly as often as any of us would like. One day when we can work everthing out we will have to have a late Thanksgiving with them all. My step-brother, David and his wife Tricia live in Minnesota and the one and only time I've ever seen them was at our parents' wedding a year and a half ago. Hi guys - if you're reading this! My brother Chad, his wife Janeene, and their son Elijah are missionaries in Papua New Guinea. They are unable to keep up with this blog, but we are trying to update them on Ellie in other ways. My family on Dad's side live out in California: My Grandma Lois (who is planning a visit out here!); Grandpa Chuck and Grandma Irene; Aunt Sharon, Uncle Jerry and Shasta; Uncle Mike; Uncle Steve - I love you all so much!

I must end now and get some sleep, or that grouchy mommy may come back tomorrow...and we don't want to see her anymore...we want the nice one to come out and play. (Oh, never mind - tomorrow is packing mommy - she's all buisness - not much fun either.) I will continue to pop out updates, but if I miss a day here or there it's because we're eating, playing, resting and pretending we live in the life before cancer. A little make-believe is good for a person, right? Like someone's going to tell me no? (then we might see mama bear and trust me, NOBODY wants to see that!) I feel such a sense of power...

Lots of love and goodnight!

Wednesday, November 15, 2006

Difficult Day...

After four good days, Ellie woke up today feeling sick. She threw up first thing this morning and had leg pain and back pain. I was so surprised because of how good she has been feeling. There are several theories as to why she's feeling this way, but the truth is - we just don't know. One possibility is that she is feeling effects of the antiviral medication she's on for the chickenpox, another is that she feels this way because of the chickenpox (although this theory causes me to question whether that means that she's about to get a whole new bunch of them or would that mean some kind of complication of the chickenpox ???) then there's the possibility that she's just sick with something else...and so goes the guessing game. At least by the end of the day she was feeling some better, and she didn't throw up anymore during the day. She didn't eat, unfortunately - today she could only tolerate liquids. I will let you know what tomorrow brings. Thanks for praying!

Tuesday, November 14, 2006

Thanking God for You...

There is no new update for tonight...another good day for Ellie...quiet and peaceful. I found myself reflecting tonight on all of you who are reading this blog and standing with us and hurting with us. On days like today when God's peace surrounds me like a warm blanket, I picture you out there reading about Ellie with tears filling your eyes and I feel as if God is collecting all of those tears and prayers in beautiful jars for me. There are so many days that I am unable to cry and I feel as if your tears are flowing out of my own heart. (This may make much more sense to my heart than it does in words.) I just cannot express how grateful I feel for all of your love. My family (by birth and by marriage) all over the country - I wish that I could reach out and hug each one of you; my chapel family - I miss you constantly; my friends and aquaintances that I have not seen in years - I have never forgotten you; my local friends and family - I am not able to spend the time with you that I once could,but I love you just the same; and those of you that I barely know or have never even met - your faithfulness amazes and touches me deeply. The very same Twila Paris CD that continually encourages our hearts has a song that was written for you all:

Every day I hear it, evil is abroad
Making even children enemies of God
Yet somehow I always find above the crowd
Other voices pleading, crying truth aloud
And I don't know your name
But I can see your face

In the dire struggle you have held your ground
Wisdom and the passion form a mighty sound
Thunder in the distance, you are not alone
Winds of courage rushing from the rightous throne
And I don't know your name
But I can see your face

You're bringing hope inside my heart
And motion to my feet
I know my friend that someday we will meet
And I don't know your name
But I can see your face

I see you standing in the fire
Standing on the Word, remembering the call
I see you standing, standing
I see you standing tall

("I See You Standing" words and music by Twila Paris)

Some pictures...

Here are some pictures and a video that go along with my earlier post. I have been wanting to get pictures out sooner, but I haven't known how or had the time to try. Now that I know how to do it, I will continue to get more pictures on here.

Ellie striking a pose! (Her hair looks thicker than it actually is.)

Photobucket - Video and Image Hosting

Funny girl...(You can see the ends of her broviak hanging out from beneath her shirt.)

Photobucket - Video and Image Hosting

Video clip of Ellie's spontaneous ballet (The music is a little faint, so you may have to increase the volume...)

Monday, November 13, 2006

Mommy, are you bigger than Spiderman?

Ellie felt very well today. She is completely covered with chickenpox, but today there was a sparkle and contentment about her that made our hearts smile. I noticed on Saturday that Ellie could not stop humming. Everything she did was accompanied by a happy little tune. Some days are so difficult - where everthing is an assault to her system - taking medicine, eating food, and just the general irritations of life, but over the past three days a peace and joy have settled down on her little heart. Tonight we cleaned her sores and put the medicine on, then she put on nice clean tinker bell PJs and brushed what little hair she has left and carefully placed the barrettes in (this is tricky because her scalp is covered with chickenpox). She sat in front of the mirror and put lip gloss on (I have no idea where she gets this from :-) When her daddy came in she was all pretty for him. She struck some dramatic poses for the camra, then we got a couple video clips of her doing a little ballet dance. On her first try, Ellie spun around and got brought up short by her IV line. She kind of gasped a little and untwisted herself, then started over after dryly commenting "I think I'll not spin this time."

As was mentioned on the blog, I was able to get away from the hospital for a full 24 hours. I was starting to feel a heaviness settle on me for a couple of days, so I was beginning to realize that I just needed to have some time away. I have been careful to take breaks often, but this time there was an overwhelming need to go away overnight. It has been three months of almost continual sickness for Ellie, and all of the mothers out there know what night time is like when you have a sick child! John was already planning for me to get away on Saturday night - he realized my need before I did, but on Friday night I had a bad meltdown. When I am around Ellie so constantly there is not a chance to deal with my emotions as they arise, and I had started thinking more about the possibility of loosing her. Earlier in the evening John and I spent a couple hours with Ethan in the playroom at the Ronald McDonald house. I was so tired and drained that I just laid down on the floor while Ethan played. He would periodically come over and lie on my chest and just hug me, then pop up and start playing again. He even dragged over a bean bag for my to rest on. When John went out of the room, Ethan looked over at me and said "Mommy, you're weak." When I asked why, he said "because you are." I thought this was odd because we play this little game where he asks me if I would fight the bad guys, and I always reply that yes, I would and I would win because I'm strong. He wants to know if I'm as big as spiderman, and I tell him that I may not be bigger, but I'm stronger because I have God helping me. (I know that what he's trying to ask is if his world is still secure, and I want to assure him that he has nothing to fear.) My perceptive little boy just hit the nail on the head that night and came right out with the simple truth: "Mommy you're weak." Later, when we were back in the hospital room, John went out to the car for something and I put Ellie to bed, then the tears just came and wouldn't quit. When John got back, he found me in Ellie's fort in the shower sitting in a pile of crummpled tissue. I could no longer breathe through my nose and my head was starting to pound.

...so Saturday night I left the hospital and didn't come back for a whole 24 hours! It was completely wonderful, and horrible all at the same time. I had such a good time relaxing and not being needed physically or emotionally by anyone. I have an amazing friend who knows exactly what to feed me and how to listen to me vent, so I spent the night at her house and was fed both physically and emotionally. Then we went to the mall and I was struck with a pervading sadness. I cannot shake the feeling that everything that should be happy feels sad. I had the same feeling when we took Ethan to Sea World a few weeks back. Everywhere I looked there were happy people with their happy children, seemingly unaware of how much pain children can bring. I didn't resent them, I just mourned that we were no longer the young new family with the tiny little girl on daddy's shoulders enjoying the Shamu show - we used to be that family. So I came back to the hospital refreshed, but also thankful to be back in the room with Ellie.

Even tonight when John came back to the hospital, it felt like this room has become a little cocoon of happiness. It's like the big world out there is so overwhelming and sad, but when we are together we can just concentrate on Ellie and each other and be happy. When John came in this evening, he brought a little tiny coffee maker for the room! I was so excited to finally have my own coffee every morning, but the thought occurred to me that it would be tainted because I had to drink it out of styrofoam cups. I banished the thought as terribly ungrateful in the face of such a thoughful surprise, then the blessed man pulled out my favorite mugs from home! I cheered and clapped my hands like a little girl. It's the little things that mean so much! When I'm sitting on the couch at home, I curl up with my hopelessly gigantic coffee mug (it's so big that the coffee gets cold before I can drink it all)and take comfort just in the experience. Now I can even have that in my little cocoon here at the hospital.

And now, so as not to leave you depressed and sad, because truly I am not, I will leave you with a quote I found in a book. It was a happy new year card that read: "I said to the man at the gate of the year: 'give me a light that I may tread safely into the known' and he replied 'go out into the darkness and put your hand into the hand of God. That shall be to thee better than a light and safer than a known way.'" I get sad and overwhelmed, but my hand is resting safely and securely in the hand of God and I do not fear the darkness. Yes Ethan, mommy may be very weak, but her God is stronger and even bigger than all of the superheros put together!

Thank you so very much for your love and prayers.
Love, Sarah for all.

Sunday, November 12, 2006

Polka dotted

Ellie is covered with chicken pox now. As Sarah mentioned before, Ellie didn't feel very well on Friday, but since then has perked up and is cheerful and enjoying playing. It's unclear whether the chicken pox is on it's way out yet, but hopefully it will be gone soon. When the chicken pox has cleared, Ellie will have her third round of chemo. It will be delayed a few days because of this unexpected distraction, but this might be somewhat positive in that it gives Ellie a little more time to recover from any lingering side-effects of the chemo and also time to gain weight.

Sarah was able to spend last night and today away from the hospital. This was a much needed break since day after day and night after night can be extremely wearing. Now she's ready again to continue in the battle that is before Ellie and therefore the whole family.

Also, just a reminder that Sarah's friend needs the ornaments by November 30th. If this is news to you, please check out the blog entry for Wednesday, November 1st to see if you want to participate.

Please continue in prayer for Ellie's healing and for the strength for the whole family.

Praise God because He's good and He's in control. "God is too wise to be mistaken. God is too good to be unkind. So when you don't understand, when you can't see His plan, when you can't trace His hand, trust His heart."

Friday, November 10, 2006

Answer to the question about Ellie's eyesight

Leslie, you asked a good question about Ellie's eyesight, but I didn't want to answer it in the comments because I know others are probably asking the same question. Ellie cannot see anything at all out of her left eye. No one is able to give us a 100% answer as to how permanent the vision loss is, but the truth of the matter is that it's not likely that she will regain the sight. The tumor in her head was causing pressure on her optic nerve, but by now the tumor should be considerably smaller. If the pressure caused damage to the optic nerve, then the vision loss is permanent. Only time will tell if there was damage, but the fact that there is no improvement yet is not a good sign. Ellie has adjusted completely to the loss - she can do everything the same as before. The only thing that frustrates her is when she tries to look down at the left side of her chest (where her broviak cathedar is) during dressing changes. We now try to have a mirror handy to help her. Thanks for the question - I forgot that not everyone knows this piece of the puzzle. Thanks for the words to that song - I love that one too. - Sarah

One More Day in Isolation and a New Baby!

Vickie had her baby right around the time I posted last night - so another Thursday baby. Ella Ann Myers weighed in at over 8 lbs. (I can't remember the oz.) and 22 inches long! I haven't seen her yet, but she sounds wonderful! Vickie is tired but doing o.k. Thanks for praying.

Ellie had a harder day today. She didn't feel very well, so it was difficult for her to eat as much as I would have liked. Still, she perked up at the end of the day a little bit.

I won't be long-winded, I stayed up too late last night. Thanks so much for all of your love and prayers. We need it so much.

Thursday, November 09, 2006

Another Day

Today was rather quiet and uneventful. While new pox seem to appear by the minute, Ellie's spirits and energy have been great. Since she can't leave the room, Ellie has made a fort out of the shower, and has taped pictures to the bathroom walls. She asked me tonight if someday she could go to the rooms of other kids who have chicken pox and tell them that it is not as bad as they are afraid it will be. She thinks that it would be a great job to work as a Child Life person at a hospital. (That statement alone broke my heart on so many levels.)

My mom came for a few hours today, so I went to a room down the hall and spent some time on the computer. It was so nice to just be alone! While I do enjoy social interaction, I've found that I MUST have a certain amount of time inside my own head to remain sane. That is a tough enough order to fill on days where it's just my famiy to take care of at home, but when you add in hospital staff, other parents, and phone calls...well, you get the idea. Sometimes when I'm at home I just sit on the couch for the entire day and stare numbly into the TV (when I don't have to get up and get something for the kids). I stopped feeling guilty about that when I realized that when I "veg" in front of the TV, half of my brain is freed up for problem solving. Years ago I realized that if I didn't figure out what I needed to stay sane, I would not be able to be a very good wife or mother. I used to say that it was like what the flight attendents tell you when you get on the plane "put your oxgyen mask on before you help the child next to you." Then one day I read it in a book (that I owned and had probably already read before) and was crushed that I must have stolen that from the author and I must not be nearly as brilliant as I had hoped. Oh well, it's still true even if I didn't come up with it on my own. This rambling train of thought leads me to my one goal for today: not to get out of my pijamas all day! As I sit here on my bed in the hospital, I can claim victory. I'm in the same sweat pants and tank top I woke up in. I love meeting a good goal from time to time. As if my lamp and throw pillows don't make enough of a statement that I can feel at home anywhere, I think the fuzzy slippers may have been a dead giveaway. Tomorrow I just might wear a dress and some jewelry - I haven't decided yet.

From what I hear, Vickie's labor is truly underway, and I expect to hear good news any time now. Maybe it will be another hour. (Her other three kids were born on Tuesday, Wednesday, and Thursday, so if this one holds out one more hour, she'll have a Friday baby.)

Wednesday, November 08, 2006

And the Hits Just Keep on Comin'...

Today we found out that Ellie has the chickenpox. We now reside in the isolation room at the hospital. This is the coveted big room with a huge bathroom - the one all of the other parents gaze into and wonder "how can we get THAT room?" Well guess what boys and girls? I'll tell you how you can get into this room, and it's not worth it! It looks like both of the antibiotics Ellie was on will be stopped and a differnt one has started, now that we know exactly what she has. It can be very dangerous for someone with a compromised immune system to get the chickenpox, so we are just praying that she will get through this well. So far, miraculously, she isn't covered from head to toe - I think the current pox count is about .

Today I am mostly just tired. Some days I just want to pretend that life is normal again and that when my eyes open in the morning I can think about something other than what it will take to keep Ellie alive. The days go by so quickly, and most days I don't even open my Bible, but for now God keeps bringing songs to my mind. Just the other day Ellie asked me to sing to her, and after the standard 4 or 5 songs that I usually sing, all of the words to a song that I learned when I was young came flooding back to me and I can't get them out of my head.

He giveth more grace when the burdens grow greater.
He sendeth more strength when the labors increase.
To added afflictions, He addeth his mercy.
To multiplied sorrows, His multiplied peace.

When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources,
Our Father's full giving has only begun.

His love has no limit.
His grace has no measure.
His power has no boundaries known unto men.
For out of His infinite riches in Jesus,
He giveth, and giveth, and giveth again.

So for today, it's ok to be just plain tired because I don't have to do it all myself. That's nice to know.

The update on my friend Vickie (Myers, for those of you who know her) is that she still hasn't had the baby! I was able to spend most of yesterday at the hospital, but had to go back to our hospital at night. Still, I had an amazing time catching up with friends - it was like a party in Vickie's room: Tania Rich (Tamra popped in), Julie (Barger) Armatti, Karen (Byron) Whatley, Tonya (Lundeen) Hagood, and Wanda Scoble (Vickie's mom) were all present at various times in the day. (Of course, Vickie's husband Luke was there - poor man - there was a LOT of estregen in that room!) My father-in-law stopped by with Ethan, so I was able to see him for the first time in several days. Vickie's midwife, Bobbie, delivered both of my kids, so it was wonderful to see her again. The whole experience was just what I needed yesterday - I was able to have a complete meltdown, and there's no better place to do that than among friends. Please keep praying for Vickie tonight and tomorrow. Thanks so much!

As always, we value your prayers and everyday we feel your love.
Love, Sarah (for all)

Monday, November 06, 2006

Sarah's Update from the Hospital

So far this hospital trip has gone well. While we wait for the final results of the blood culture, Ellie is on antibiotics that cover many of the possiblities. So far the blood culture is negative, but they also did a culture on an infected blister that Ellie has, and that culture has shown a bacteria that needs to be treated with antibiotics. Her fever is gone, so she can go into the playroom today.

Ellie's feeling very well today and has eaten a great breakfast of eggs. Food is still something of a struggle, but when we get eggs in her fist thing, the whole day goes better. We have found that there is a bit of a discrepency about her weight. We have finally figured out how to get an accurate weight, and the bad news is that she never weighed 54 pounds like we had hoped, but the good news is that she has not lost 9 pounds since her last chemo - she has only lost 2 pounds! (I thought I was going crazy that Ellie could have lost 9 pounds and I couldn't see the change in her - 9 pounds when you only weigh 46 lbs. is a big deal.) Two pounds should be easy to make up or exceed before the next chemo. (My personal hope is for her to break the 50 lb. mark.) Now that we have figured out the scales, we can be much more confident in our assessment.

Since finding out about Ellie's cancer, we have been finding so much comfort from Twila Paris' album "A Heart That Knows You". Almost each and every song gives us such strength and comfort from God. One that has been a favorite of mine for years is "The Warrior is a Child" and as soon as Ellie heard it, she felt like it was about her. Some of the words of the chorus are: "People say that I'm amazing, strong beyond my years, but they don't know inside of me, I'm hiding all the tears. They don't know that I go running home when I fall down. They don't know who picks me up when no one is around. I drop my sword and look up for a smile, cuz deep inside this armour, the warrior is a child." Last night at bedtime, we had the CD playing and as that song ended she said "Mommy, I'm getting to be a big girl because I shed a tear during that song." I asked her if it was because she was happy, and she said that it was. (We have had the conversation before that sometimes grownups can cry because they're happy and she just didn't get it.) Another of her favorites is "Sweet Victory" and she's started singing the words to the chorus "Sweet victory, over the enenmy, gentle power, all I ever need is SWEET VICTORY!" John and I just sat and marveled as we watched our daughter connect with the same beautiful music and words that God has used to encourage our own hearts. Ellie drifted off to sleep listening to the music. While Ellie has had to endure some very difficult things over this past couple of months, I have seen her begin to develop such a depth and peace and even joy - the kind that is often only born out of deep struggle.

Well, I started this update at the begining of the day, but it has taken me all day to finish it. As the day is ending, I am happy to report that Ellie played her heart out in the playroom. She has been trying very hard all day to eat her food. We are about the get into her best time of day for eating, so this will be my focus until her bed time.

While you are praying for Ellie tonight or tomorrow (whenever you read this) please also pray for my friend Vickie who will be having a baby girl tomorrow. John and his aunt Kathy will be at the hospital with Ellie so that I can be with Vickie. Please pray that everything goes well. This is Vickie's fourth baby and a couple of her other deliveries were very difficult. When she is induced, labor can go on for days. Please pray that it is speedy and as easy as possibly and that mom and baby come through it beautifully. Tomorrow I should have more of an update than usual.

As always, thank you so much for your prayers and love - we love you all.

Saturday, November 04, 2006

A bit of a fever

Ellie has come down with a fever, so to be cautious she has gone back to the hospital. They will start giving her antibiotics and keep an eye on her.

Please pray:

1.) For healing for Ellie, that she will eat well and gain weight, and that this fever will be quickly dealt with.

2.) For comfort, strength, and wisdom for John and Sarah.

3.) For comfort for Ethan.

4.) For comfort for the Grandparents: Gary and Nancy, Stan and Pat.

Thursday, November 02, 2006

Sarah's account of today

Today has been long. We began the day by going to the clinic and getting
Ellie's blood checked. Her white count is basically at zero, and she was in
need of both a hemoglobin and platelet transfusion. This wasn't a big
surprise to me, as Ellie's face and even lips were completely pale. It was
wonderful to see some pink come back into her face while the hemoglobin
transfusion was in progress. Ellie also had the dressing changed on her
broviak (catheter that allows for medication, blood transfusions, and blood
draws). This is a once a week process of removing the very sticky covering,
cleaning the site and tubes, then replacing the dressing. It's a very
difficult ordeal for Ellie, especially since the removal and replacement of
the tape is in the same place every time. Despite this unpleasantness, we
are all thankful (including Ellie) that she has the broviak in place as it
eliminates the need for continual IV sticks. The only thing Ellie hates
worse than tape on her skin is needle sticks.

Really, the hardest part of the day was how difficult it was to make sure
that Ellie had enough to eat and drink. I brought a small cooler with us,
but it was still very difficult to keep up with it. She didn't feel good
with all of the activity and low blood counts. I mentioned last time I
wrote how excited we were about the weight that Ellie gained last time. By
Monday, she had lost 9 pounds! It is so frustrating to gain ground, than
loose it again. BUT - today she showed a one pound gain, so even that is
great to see. We now have about two weeks to try to pile on the weight.
She cannot afford to loose 9 pounds each round without gaining it back in
between. THIS IS SUCH A HUGE PRAYER REQUEST FOR ELLIE. Not only is it easy
to loose weight because of feeling ill from chemo, but the cancer is trying
to rob her of everything that we put into her body. There are so many
dangers to Ellie during this time, from illnesses to side effects of the
chemo, not to mention the cancer itself, that it is often easy to loose
sight of how dangerous something as simple as weight loss can be. It has
become an all-consuming, full time job for me to keep putting something into
her mouth. Actually, as depressing as this sounds, it's really very
comforting to feel like I can do something that has a measurable result.

Yesterday started out so poorly, with Ellie not wanting to eat, but I am so
proud of her. We talked about it, and decided that keeping hydrated and
putting healthy food in her body was like shooting bullets at her cancer.
Ellie has already started referring to herself as a fighter, so we talked
about how hard fighting can be - that it's not fun or easy - but that's what
she has to do right now. She totally got into the concept, and now we keep
a daily log of Ellie's bullets. Yesterday she shot 29 bullets at her
cancer! To let you know how hard that was, she has to drink 4 oz. of liquid
(any kind) to make one bullet. Eating earns 1-2 (depending upon quantity)
and she gets extra for particularly nutritious things. Thus the one pound
gain in one day! We also talked about the fact that she is not fighting
alone. She now knows that everyone who loves her is fighting along side of
her, and there are many people, some of whom she doesn't even know, that are
prayer warriors. I never thought I'd be preparing my 8-year-old daughter
for battle, but here we are. It has been such a deep joy to my heart to see
Ellie's fighting spirit. Tonight we watched Veggie Tale's story of Esther,
and the song she sings was particularly poignant to me. While I know that
we have no guarantees on the outcome of Ellie's cancer, the one thing that I
am convinced of is God's love and care.

The battle is not ours
We look to God above~
For he will guide us safely through
and guard us with his love

I will not be afraid
I will not run and hide~
For there is nothing I can't face
when God is at my side
No, there is nothing I can't face
when God is at my side

Today was also difficult on Ethan. He did not want to leave us morning, and
had a particularly hard time when John said goodbye. Tonight while we were
watching "Esther", Ethan said, "I love my dada so much", then "I love you
Mommy, I love you, Ellie." After a pause he said, "I really love my dada"
and Ellie said "I know, I love him too." He and Ellie then exchanged
another round of I love you's. Sometimes all a mommy needs is to hear a
completely unsolicited "I love you." I especially love hearing and seeing
how much they love their dad. He has been wonderful to both of them - they
draw such comfort and strength from him that it warms my heart, and I am
comforted as well.

Thank you again for all of you love and prayers.

Wednesday, November 01, 2006

An unexpected blog entry

Sarah's friend Jill had a great idea! Here it is:

We would like to put up a Christmas tree as a special surprise for
Ellie when she comes home from one of her chemo treatments. There are
so many people thinking or her and praying for her, and this is a
chance to show her we care.

If each person or family would like to make or buy one ornament, we
will use it to decorate the tree. Please put your name on the
ornament if possible. (an attached tag might work in some situations)
If you want to send her a Christmas card, we will collect those to
give her at the same time.

If anyone wishes to give a monetary gift, we will also pass those on
to the Skees family.

Please send or give the ornaments to Jill Snyder at 1000 East First
Street, Sanford, FL 32771. We need them by November 30.

Thank you for showing your concern and love for Ellie.