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, March 31, 2007

Ellie Smiles!

Thank you all so much for the sweet and encouraging comments! Your love has been amazing. We have felt strength that we should not feel during this time. Loretta and I were talking about how we have felt like Moses today - when the people stood around him and held up his arms so they would not get tired. That is the way it has been! Another thing I've decided... you people are saving my sanity! After blogging half of the night away and sleeping in, I awoke feeling like a different person. I felt like I had stepped out of the dark night and into the sunshine. Everything was clear in my head and heart and I knew exactly what I needed to do! In order to understand what happened to me, you need to know what our "team" here in New York looks like...

Melanie provides the practical and medical expertise needed for navigating the complicated world of the ICU. She is able to handle being the only one in the room when the rest of us need to rest or eat. (And when she is not there, it takes three of us to replace her!) Ginger has been Loretta's eyes and ears in the room as well as our informational go-between. Loretta (out in Montana) records everything and provides much needed organization, continuity and balance. (When Loretta is "in the room" and she is ALWAYS in the room... I am there. I miss nothing because she keeps me in the loop about every detail. She also knows me better than I know myself sometimes, so she can often make sure the situation is handled to my liking. She is truly my proxy!) Mom and Pat have taken care of practical details such as grocery shopping, errand running, laundry, cleaning and most importantly are the beautiful loving grandma faces that Ellie needs to lay eyes on from time to time. Stan has provided a much-needed outlet for John as they have taken some time to explore the city and burn off some energy and steam. John has stood watch over Ellie in the hospital from time to time - learning the technical information and details. (John and Stan have both been there to look into Ellie's eyes and whisper loving words to soothe her heart.) And because of this entire amazing network - I have been able to have rest when I need it while still being in the loop as to Ellie's every move. And when I am in the room, I look down into my sweet little girl's face... and I just know exactly what she needs to hear! All of this, my dear friends is because of you. Teamwork like this never EVER runs this smoothly, but we have seen God work miracles and move mountains - even in the tiniest logistical details!

And so this morning I walked over to the ICU and introduced myself to the nurse. She gave me an update of Ellie's status. Because I had already been briefed on Ellie's night, shift change, rounds, and the surgeon's visit, I understood everything that she said and was able to ask questions and express any thoughts or concerns that I had. I also asked to speak to the doctor as well. Once all of this was taken care of, Melanie, Ginger and I formulated a plan for the next 24 hours. I knew exactly when I wanted to be there and who I needed to be with me. I'm telling you what, it was a power trip the likes of which I have never known! Most of you know that I am just about the most timid creature God placed on this earth, and the rest of you will have to take my word for it. I still may not have come across very bold today, but in my mind I was beating down the underbrush on either side with a machete! As I sit now, I can't decide whether I feel exhilarated or nauseous... I think God may need to give me a little more warning next time he decides to give me those kind of muscles - a girl's gotta at least warm up a bit first don't you think?

Tomorrow should be a big day for Ellie. The plan is to take Ellie off of the ventilator. She will begin to be weaned off of the sedation drugs early in the morning, and before she is extubated will be completely awake. This may be quite traumatic for Ellie and so John, Melanie and I will all be on hand to keep Ellie as calm and informed as we can. We will take turns sleeping during the evening and night. This afternoon Ellie had about an hour of awake time. She was still groggy from the drugs, but was able to nod her head, squeeze my fingers, and show us that she understood what we were saying. She remembers things that happened yesterday, and she still worries over the same things that she always did - i.e. taking the IV out of her arm. A couple of times she tried to talk to me around the ventilator tube and her eyes filled up with tears when she couldn't express herself. I was able to explain enough of what was going on to comfort her, and several times she just opened her eyes to make sure that I was still there. When John came in for a visit, he tenderly kissed her and spoke her name, and she looked up at him and SMILED! And not very long after that, I smiled in her face and told her how amazing and beautiful she is and she smiled in return. My heart just melted. She is the same little brave girl, talking it all in stride... fighting and working and loving! She has been sleeping so peacefully in the hours since that wake time. Tomorrow promises to be the hardest day that Ellie has ever known, but today she smiled. And she will do it again some day soon.

Friday, March 30, 2007

Holding Her Life in His Hands...

It is past midnight, and I am finally sitting in front of my computer screen! I almost did a happy dance when it was up and running, but now I'm staring at it like my brain has turned to mush. I'm not sure that I know how to begin. I've been storing up things for days that I want to tell you, and now I'm just hoping that I don't forget it all... I will say that it is a good idea for you to have read the previous post from Loretta with all of the medical information first. This one will have more personal information because I am assuming that you already have the basic medical facts.

First of all, I just want you all to know how much you have meant to me over these last few days. Even though I was in a "computer blackout" of sorts, I could tell that you were holding us up. Each and every dark moment that we have lived through has been framed within your love and prayers. We have had moments of sadness, but not despair. I have felt your invisible arms constantly surrounding us...lifting us up, and holding us there. There have been moments when my knees should have buckled and my heart should have broken into a thousand pieces...but they didn't. I should still be in a corner weeping somewhere... but I am not. I have cried, but I have also laughed - many times.

The last time I wrote to you, things were so up in the air. I just didn't know for sure whether I should ask John to come all this way ahead of schedule when it might be no big deal. But in my heart of hearts I just needed him to come. On Wednesday morning John walked into Ellie's hospital room and I promptly burst into tears! Mom's eyes filled up with tears as well. Ellie was sound asleep in her bed. John had to pass by the whole group of doctors who were standing outside of our room doing rounds, and he said that when he passed that group then walked in to find mom and me crying, he thought that he was too late and Ellie had actually died before he could get there! Talk about your welcome home...

Within four hours of John's arrival, Ellie was taken to the "Procedure Room" to have her Broviac taken out and a temporary line put in. The whole thing took about 20 minutes and John and I were brought into a little recovery room to watch Ellie come out of the anesthesia. As she became more aware of her surroundings, Ellie began to get aggitated and maon in pain. This was a little puzzling as she was given plenty of medication to ease the pain from the procedure. The area that she pointed to that was hurting was her back - on the lower-left side. I began talking with the nurse about Ellie's kidneys and urine output to determine if that was something we should be concerned about. She noticed that Ellie's color was not good - pale yellow with colorless lips, and I had noticed the same thing. She immediately called the doctor. In twos and threes, people began coming into the room - slowly at first, and then with greater speed. Ellie was writhing and moaning, but all the while trying to communicate how she was feeling. She kept trying to say that she felt like she couldn't breathe, but the monitor showed that she was getting enough oxygen. It was as clear as day to me that she was feeling pressure that made her feel like she couldln't breathe. John and I would take turns trying to calm Ellie down while the doctors talked and began giving fluids and medications. At first I was looking around and listening to the doctors and trying to translate what Ellie was trying to say. Eventually a doctor from the Pediatric ICU at the hospital across the street (the one we are in now) came in and began doing things. From time to time I would catch John's eye. He was completely calm - there was no panic, no distress - but we shared a mutual look that said "this is very very bad... and it is really happening." It was at that point that I realized that the only thing that I could do was to keep Ellie as calm as possible. I tried to tuck myself out of the way and get directly in Ellie's face. I leaned in until my face was touching hers and begain softly singing into her ear. She immediately stilled her thrashing and screaming and as the doctors and nurses continued to work all around us, I lost all track of time. I had tunnel vision, and quite possibly closed my eyes because from that moment on, I did not see or hear anything around me. The only thing that I was aware of was John's hand gently rubbing my back. I vaguely remember singing "In the Garden" and "He Giveth More Grace" and possibly others, but what I do rememer vividly is singing all of the verses to the song "Day By Day". As I sang, my heart was crying, but the tears didn't come. Ellie needed to be calm. And so I sang these words for her... and I sang them for me:

Day by day, and with each passing moment,
strength I find to meet my trials here.
Trusting in my Father's wise bestowment,
I've no cause for worry or for fear.
He whose heart is kind beyond all measure,
gives unto each day what HE deems best -
lovingly, its part of pain and pleasure,
mingling toil with peace and rest.

Every day, the Lord Himself is near me
with a special mercy for each hour;
All my cares He fain would bear and cheer me,
He whose name is "Counselor" and "Power."
The protection of His child and treasure
is a charge that on Himself He laid -
"As thy days, thy strength shall be in measure," -
This the pledge to me He made!

Help me then, in every tribulation,
so to trust Thy promises, O Lord,
That I lose not faith's sweet consolation
offered me within Thy Holy Word.
Help me, Lord, when toil and trouble meeting,
ever to take, as from a father's hand,
one by one, the days, the moments fleeting,
till I reach the promised land.

I gradually roused from this state of intense focus to find that John and I were being told that we needed to leave the room. I looked up in confusion and saw that while I had been singing, the room had continued to fill with doctors and nurses. As we moved towards the door (John was protesting all the while - asking to be allowed to stay) I looked around and saw a few familiar faces in the crowd - Ellie's nurse at the IV pole and another nurse and a couple of doctors in the sea of faces... As soon as the doors closed behind us, I burst into tears. Eventually I calmed down. John and I sat next to Mom in the waiting area (she had been there the whole time, trying to glean information and calling people). I was astounded to know that we had been in that room for hours, not minutes. As we sat there over the next couple of hours, doctors and nurses continued to pour into the small room. I still don't know how that many people were able to fit in there! It was amazing. John was like a bulldog - anytime the door would open, he was standing up - craning his neck for a glimpse. From time to time someone would come out with an update... "We are trying to intubate her, but we're having some trouble, so it is possible that we will need to make an incision in her throat..." (I think that I felt a little faint when that comment was made.) "We were able to intubate her, but her heart did stop and she was aggressively recussitated for three minutes..." (The way that she said "her heart is beating now, though" almost as an afterthought struck me a little funny, so I laughed and said "well THAT'S good!" and she gave kind of a surprised little chuckle and said "It IS good...") "There was some bleeding in her chest, so the surgeon came up and placed a tube in her chest to drain the blood..." "The chest x-ray shows that the surgeon will need to come and move the chest tube a little..." On and on the updates went. One of the doctors from the Neuroblastoma Team came and just sat next to me. Every once in a while she would go in the room for us since she was allowed in there, and she would just check on things. The pharmacist and the social worker stayed with us for a while as well and Ellie's primary NB doctor who came to check on Ellie and see how we were doing. Everyone was just wonderful to us. No one could believe that this was happening. Finally around 8:00 p.m. (her procedure was at 2:30) Ellie was wheeled out on a stretcher and we were transported across the street to the PICU. I will spare you the details of how she looked, but suffice it to say that she did not look like Ellie.

By the time we got into the the PICU, I was dead on my feet. I had missed most of the two previous night's sleep in the hospital with Ellie's fever, and after the trauma of the day, I was DONE! I have never felt quite that way in my entire life. Even finding out about Ellie's cancer could not hold a candle to the horror of this day. Ellie was in a medically induced coma and there was nothing more that I could do for her... so I left the hospital. Mom stayed with Ellie while John walked me home. As we stepped out into the cool air, my eyes were open but I saw nothing. I held John's arm and just went where he led. As we walked the streets of New York City, tears were pouring down my face. We passed people... we crossed streets and still I saw nothing. I did have the presence of mind to wonder if I was in shock, so I suppose that I wasn't... but I felt shocked! (Shell-shocked, maybe?) We finally stepped into a little restaurant because I was so hungry that I was not going to be able to sleep over the sound of my own stomach. I still cannont believe that I could not have the decency to for once lose my appetite... that's just wrong! It was nice to have a little time with John. He then walked me to the Ronald McDonald House and went back to get Mom. (Afterwards, he went back to the hospital and spent the night watching over Ellie.) Finally, alone in my bed, I was able to cry out to God. I asked God to spare her life, but then I got so scared that she might make it through this horrible time and suffer intensely only to suffer more and die of cancer, and then I remembered Ellie's prayer to die in her sleep and I said "this is not how it's supposed to be" (because I could not fathom how this situation would qualify as peacefully dying in her sleep...) and then I got so confused about what I was actually trying to pray for that I just started begging God to do what was best for Ellie! It turns out that was the best place I could come to. The crying I did on that night was deeper than any I had ever known before, but it was short lived and I think that I fell asleep before 5 minutes had passed. I have this vague, dreamlike memory of John kissing me and telling me that Mom was home and he was headed back to the hospital.

The next morning I felt some better, but still a little emotional. The hardest thing for me was knowing what to do with myself. What I know how to do the best is to read Ellie - her mood, expressions, words, etc... I know how to help her and calm her. But this was something all together different. I looked at Ellie lying in the bed not moving and I didn't know what to do, and yet it was inconceivable to simply do nothing. Finally, Loretta made one statement that has continued to ring in my ears: "You have to think like Ellie." And so, operating under the premise that Ellie can hear everything even while she is just lying there sedated, I began to talk to her and try to address things that would normally concern her. As she started to open her eyes and become more aware of things around her, I wanted to tell her "It's o.k. - you have something in your mouth, but don't fight it - it's there to help you." but Loretta reminded me that Ellie would want to know 1.) what is it? 2.) why is it there? and 3.) when will it be gone? and 4.) say IT IS NOT O.K.!! So what we tell her is "You have a tube in your throat that is helping you breathe, I know it's uncomfortable, and it will be out soon." I have learned so much from Loretta and Melanie about how to soothe Ellie during this time and how to describe things when I get little or no feed back. I feel like I'm having to learn a new language.

John, on the other hand, has been a pillar of strength. He hit the ground running when he got here. Throughout the initial crisis John remained functional and decisive. He stayed up all night the first night and tried to learn everything that he could about all of the machines and drugs and the general balancing act that is an Intensive Care Unit. He has also helped family members find their way around the City. He is truly in "fight mode" - ready to take on whatever comes and help Ellie fight in any way that he can.

That first morning, Stan, Pat and Ginger John's parents and sister flew in, and Melanie took the afternoon train in. Mom was here already when this all happend, and Gary has made the sacrifice of not coming so that he could keep Ethan. (It was very important to me that Ethan be somewhere familiar so that he can stay as stable as possible during this time. Ethan can feel what's going on sometimes, and I don't want him to suffer any more than necessary. He loves being with Papa, so I'm hoping he can just feel like he's having a nice little vacation and be spared some of the intense emotions that can happen during this time.)

Last night Melanie took the night shift at the hospital. John had been awake for over 60 hours, so he finally crashed, but I was lying there wide awake wishing I could get on the computer and send an update. (We were staying in a hotel right next to the hospital and there wasn't internet access.) I finally called Loretta and asked her to read me the comments and put out an update. As we were winding down, Melanie called Loretta and told her that Ellie was wide awake, very calm, and trying to communicate, but no-one could figure out what she wanted. (She is still on the respirator.) Over the phone I tried to give ideas of questions she could ask. Finally, I jumped out of bed and took off for the hospital. I kept praying for wisdom on the way. When I arrived at the bedside, Ellie was awake, and like Melanie said - she was CALM. Melanie showed me the motion that Ellie was making with her hands, and I looked down at Ellie and asked "Do you want your bunny?" and she nodded her head! (Bunny was given to Ellie during her first hospital stay in September - thank you David and Renee - and since then, has been dubbed "Procedure Bunny" because Ellie will not tolerate any procedure, especially radiation, without Bunny.) Since it was 2:00 a.m., the nursing student who was in the room offered to walk with me back to the RMcD House to get Bunny. We delivered Bunny straight into Ellie's hands (of course she was sleeping by then, but I didn't care).

I distinctly remember the moment when I knew that we were going to be o.k. It was on that first morning when I went to the hospital and felt so uncertain. I was trying to do and say the things to help Ellie, but it all felt so wierd. I brought the CD player and Ellie's favorite CD's to help her feel safe. One ear piece was in Ellie's ear, and I leaned my head down to her pillow and put the other one in my ear. The song that was playing was one that I have quoted on this blog before, but I need to share the whole thing with you now, because on this day these words washed over my heart and again, I heard them for Ellie as she lay there with the respirator breathing for her, and I heard them for me:

You Are Good - by Nichole Nordeman

When the sun starts to rise and I open my eyes
You are good. So good.
In the heat of the day with each stone that I lay
You are so good

With every breath I take in
I’ll tell you I’m grateful again
When the moon climbs high
Before each kiss goodnight
You are good

When the road starts to turn
around each bend I’ve learned
You are good. So good.
And whenever somebody’s hand
holds me up Helps me stand,
you are so good

With every breath I take in
I’ll tell you I’m grateful again.
Cause it’s more than enough
just to know I am loved
And you are good.

How can I thank you?
What can I bring?
What can these pour hands
lay at the feet of a king?
So I’ll sing you a love song
It’s all that I have to tell you I’m grateful
for holding my life in your hands

When it’s dark and it’s cold
and I can’t feel my soul
You are so good
When the world has gone gray
and the rain’s here to stay
You are still good

So with every breath I take in
I’ll tell you I’m grateful again
And the storm, may it swell,
even then it is well
And you are good.

How can I thank you?
What can I bring?
What can these pour hands
lay at the feet of a king?
So I’ll sing you this love song
It’s all that I have to tell you I’m grateful
for holding my life in your hands.

You are holding my life in your hands.

As I listened to the music with my head next to Ellie's, I couldn't stop the tears from streaming down my face. When the song was over, I knew that no matter what the happend next, my Saviour was holding Ellie's precious life in His hands and that He is still good, and He is enough for our family... no matter what. Since that moment, my heart has known such peace. Sometimes Ellie seems to be making excellent progress, and other times her temperature starts to rise and her blood pressure dips and the settings on the respirator go up instead of down and we don't know what will happen next. But the "peace that passes all understanding" truly is guarding our hearts and our minds in Christ Jesus. And I know that somewhere deep down in Ellie's heart... in the place that the sedation drugs cannot reach... it is guarding hers as well.

Thursday, March 29, 2007

Quick Medical Update

Things have been really hectic and changing so rapidly. Sarah has asked me (Loretta) to give a quick update until she can get on the computer tomorrow, hopefully.

Ellie is in the Pediatric ICU since last night around 8 PM. Yesterday, the procedures to remove her Broviac and the placement of a new Central Line were completed successfully. Following that, as she was coming out of the anesthesia, she went into Septic Shock and ultimately went into cardiac arrest.

The pulling of the Broviac 'released' or somehow caused the bacterial infectious condition to explode (septic shock). She was moving in the direction of sepsis since Monday night when the fevers began. The placement of the new line caused the additional complication of internal bleeding in the pleural cavity. This fluid in the cavity pressed on her lungs causing inability to breathe and eventually contributed to the shifting of her esophagus and heart in the chest cavity. This all culminated in cardiac arrest and extreme difficulty intubating her(placing a tube in her airway). They worked on her for approximately 4 hours before they could transport her to ICU. During that time her heart stopped for 3 minutes, but resuscitation was eventually achieved. She is on "significantly excessive" amounts of blood pressure medication. She was placed in a drug induced coma and put on a ventilator (breathing machine). They are keeping her body temperature around 94-95F to prevent cardiac arrest, decrease metabolic demands, and studies have shown this improves neurological outcomes. John stayed the night with Ellie in ICU and he reported the medical team worked all night to try to keep her stable - her tissues are full of fluid, her blood pressure was difficult to stabilize. She appeared swollen all over especially her head, neck, chest, and hands. The fluid in the pleural cavity is not draining from the chest tube well and the lungs now show fluid build-up. The doctor told John the swelling will get worse before better, and the kidney and liver function will get worse before they get better. If Ellie does not adequately deal with all of this fluid they will have to put her on dialysis to assist. They reported being mostly pleased with her urine output and bladder function. The doctor concluded, "she is not out of the woods yet, but is doing okay".

Mid-morning, the doctors suspected a clot in the right side of the chest cavity which seemed to be impeding the draining of the fluid from her chest. They initially planned to have the surgeons come in around noon and try to flush the drain and remove the clot or administer drugs to bust the clot up. They were also planning a CT Scan of the head around 2 PM and another x-ray of her chest. By mid-day, the decision by the medical staff was to cancel all tests and procedures and let Ellie rest. They stated somewhere during the early morning hours to the present she had begun to show signs of stabilizing and they did not want this jeopardized by any procedures that could aggravate the sepsis further or cause cardiac arrest again. They felt the fluid drainage from the chest cavity was adequate enough to allow delay of the investigation of the clot until tomorrow. A chest x-ray was done, but no CT Scan of her head.

Around 5 PM Ellie began to show signs of consciousness as they had stopped the paralytic drugs in preparation for helping her to start breathing on her own. The swelling in her face and neck appeared to be lessening. John was able to communicate with her!!! He asked her if she could squeeze his finger - she squeezed with both hands! John reported that Ellie was beginning to have "little sessions of movement" when someone would come in to do something to her -- clean her mouth, mess with one of the 9 tubes coming or going in her body, etc. She definitely doesn't like any of that! We still have the clot in her chest to deal with tomorrow, however they are more comfortable with her brain functioning in light of these new responses from her.

As the day has passed Ellie appears to be progresing. So much so that tonight and through the morning hours they will begin to wean her off some of the blood pressure meds and the ventilator as well. Her Aunt Melanie will be with her tonight so that John and Sarah can get some much needed rest - they will be only two minutes away.

Sarah wants you to know that while she has really wanted to get on and "blog" she has been unable for one reason or another. She asked that this medical update be given with the hope that she will be able to get on tomorrow and share her heart with you all. She says she appreciates and feels the prayer and love of everyone and is strengthened by you all. She asked me to read the comments to her tonight over the phone before she went to sleep.

Wednesday, March 28, 2007

Please pray

Sarah has asked me (Kim) to pass on the latest information to you all. Ellie went in to surgery this afternoon at 2:30 with the doctors planning on removing her old broviac and replacing it with a new one. They had trouble geting her stabilized enough to do that, but were finally successful. When the new broviac was put in, it caused some internal bleeding. This caused the cascade of events that followed. Around 4:00, Ellie went into septic shock and was given Dopamine to try to raise her blood pressure. An hour or so later, Ellie had to be "aggressively resuscitated", but is now "holding her own". The family there can tell that she is fighting with everything that she has. She has been sedated and is on a ventilator and will remain like that until her systems normalize. When she is stable enough, they will move her to the ICU. Please pray for Ellie and all the family.
"When peace like a river attendeth my way
When sorrows like sea billows roll.
Whatever my lot, Thou hast taught me to say
It is well, it is well, with my soul."

Tuesday, March 27, 2007

A girl can change her mind, can't she?

I've changed my mind...today is actually the longest day! It has been intense. By the end of the day, we were waiting for Ellie's radiation appointment - yet again. She was burning up and I was just sitting there feeling sick to my stomach - every instinct in me was saying that something was very very wrong. When we came back to the room from radiation, we gave Ellie her daily injection (to make her white count come up) and the nurse did dressing change on Ellie's Broviac (the site was also infected). All of that was so traumatic. Meanwhile her blood pressure was going down. When there is persistent high fever along with low blood pressure, it can mean that she's getting septic. ["Sepsis is a condition in which your body is fighting a severe infection. If you become 'septic,' you will likely be in a state of low blood pressure termed 'shock.' This condition can develop either as a result of your body’s own defense system or from toxic substances made by the infecting agent (such as a bacteria, virus, or fungus)."] Then Ellie was taken off of fluids and the Broviac lines were closed up. They had to stay open all day in order for both lines to be flushed with a heavy duty antibiotic. All of the activity was stirring up the infection in the body, so Ellie's fever never really came down far. Once the lines were capped, some nurses came to start an IV in Ellie's arm. The poor thing had been through so much already - she was so upset, but she went through it like a trooper. Once fluid began going through the IV, her vitals were taken and the BP was up and temp was down! By then MY vitals probably needed taking! I've changed my mind... I'm not going to live through this...

Now her fever is back up. Apparently they aren't as worried about a fever when her counts are this low if Tylenol can bring it down and her BP is high enough. It's the combo of high, uncontrollable fever with low BP that is scary. She is not out of the woods yet. If she shows signs of being septic now that the Broviac is not in use, then they will take the line out completely. John is coming tomorrow morning. (His origional plans were to come on Tuesday of next week.) Things are just too up in the air - they can change so quickly... By tomorrow we should know which specific bacteria is involved in the infection. After 24 hours of not using the Broviac, they will culture it again, and then start it up to see if she can still use it.

The one up side of this hospital is that they have fabulous food! I love calling in an order because I get so tickled to hear the recording that says "Thank you for calling room service where we provide a fine bouquet (pronounced "boo-kay") of foods..." I thouroughly enjoyed my broiled atlantic salmon with mustard/ginger sauce and carrot soup. Yes, I am totally serious! Ok, so I've changed my mind again... I am going to make it through this - I've got room service... sigh. (Hmmm... what shall I pick from the bookay for breakfast?)

Ellie's Fever

It is now 11:00 a.m. and Ellie's fever has been up above 103 for over 15 hours. It has been horrible to watch, and in the midst of it all she threw up three different forms of Tylenol. Before she threw up the third one this morning, and still with a fever over 103, we had to go downstairs for radiation. I wanted to cry. But Ellie was still brave and went through it. Once we came back to the room she threw up. So she was given a medicine to help her stomach and she had to take the Tylenol for a FOURTH time! This time the drug put her to sleep before she could throw up, so she is in a very deep sleep at the moment. The nurse just took her temperature and it was 101.8 - I never thought those numbers would look so good! The nurse also said that the blood culture is growing something - that she has an infection in her Broviac line. That sounds awful, but it is treatable with antibiotics...the same ones she was put on last night. And so, she is on three antiobiotics, one anti-viral, three anti-nausea meds, Tylenol, and something to make her white count rise... and she may be getting platelets today. Oh yes, then there's the afternoon radiation treatment. I know... my head's still spinning too. This, combined with loss of sleep has me feeling dazed and slightly dis-oriented, but I'll live. Mom stayed the night here as well, and she has already been out and about running errands and going back to the house for more stuff. I think that we're finally settling in for a quiet afternoon. I keep looking over at Ellie and she has lost that scary dusky red color on her head and face - it's kind of sad when it's a relief to see her pale. I'm just so proud of her. She has obediently taken and re-taken the Tylenol and everytime I tell her how well she's doing or tell her how sorry I am that she's sick, she says "thank you" in the smallest voice. Every single time - "thank you"!

It has taken me hours just to write the above - in between all of the mayhem. Her fever went up again, and is still just hovering in that 102-103 range. I just don't know what's goig to happen. With line infections, there can be a number of complications. One of the ways of handling this would be to take her Broviac out. Please pray that whatever is best for Ellie would happen. Thank you so much.

Monday, March 26, 2007

The very long, never ending day...

Today was long... so long that even though it's almost 10:00 p.m., it's still not over. Ellie had radiation this morning, followed by platelet and red blood transfusions, followed by more radiation. Finally we arrived home at supper time, only to go in to urgent care - Ellie has a fever of over 103 degrees. The blood cultures have been started along with two antibiotics. She just threw up the tylenol. It's going to be a long night... We will eventually land in a room like we did last time - for at least a couple of days while the cultures sit and grow, or not grow bacteria. I was so hoping that Ellie had escaped this ordeal - we were so close - 12 days out from the beginning of chemo. Still... this happening was almost a certainty. Poor little thing - she's like a limp dishrag. She started the day this way, only without fever, so it was no surprise that all of her counts were low. After the blood transfusions Ellie perked up, but it was short lived. We took a taxi to the hospital and Ellie sat on my lap, facing me, with her burning head on my shoulder just breathing. When we were stopped at a red light she said in a sing-songy voice "this is the smoothest taxi..." At the moment, Mom is sitting with her in the bed, stroking her head while she sleeps. She is much cooler right now. So that's the scoop for tonight. I will let you know how it goes tomorrow...

Sunday, March 25, 2007

Uneventful Weekend

For the first time since we arrived in New York, I have spent two consecutive days in the room - never having to go out except to go down the elevator to the kitchen! It has been wonderful! I don't think to this point I had even spent one whole day indoors. We have been able to sleep in and relax... watch TV... answer emails. Ellie has done well other than throwing up one time. She has been eating a little better, but it's been very slow progress. I think that she's enjoyed lying around and relaxing too. Mom has gone out to the store a couple of times and has been doing a lot of cleaning and organizing around the room.

Tomorrow radiation begins again. She has two treatments every day - Monday through Thursday. There should also be an MIBG scan and bone marrow biopsies sometime this week. I will let you know how it all goes.

John says that Ethan enjoys having him home so much. John's been giving him lots of extra huggs and kisses and spending special time with him. I miss hugging my little boy so much! The only thing that makes John being home bearable for me is that he can make Ethan happy.

Thank you all for the sweet comments and emails. We cherish having you all in our lives!

Thursday, March 22, 2007

True North

It has been a long day, but better than yesterday. Ellie did throw up just before her radiation appointment this morning, but that made her feel a little better while she was on the table in the mask. It has been one our worst fears that she would vomit in the mask during radiation. We were able to talk with the radiation oncologist this morning and she was able to answer some questions about Ellie's symptoms. The headache should not be at all connected with the radiation itself - the doctor assured us that at most it was a tension headache from her positioning on the table. Ellie was also experiencing some neck and jaw pain, and the doctor said that it is uncommon, but some people do have their saliva glands swell when receiving radiation to the head. She said that at most, Ellie would feel it today, but for sure by tomorrow it would be fine. (And Ellie hasn't complained of it since this morning.) She said that the nausea is very rare for radiation to the head, but there are a few sensitive individuals who will throw up from radiation to the big toe. And so, not for the first time, I am reminded that Ellie is SENSITIVE... imagine that!

After the radiation and doctor appointment, we went to the Day Hospital for blood work. Ellie was in need of another platelet transfusion. We also saw both a nurse practitioner and a doctor. We have had Ellie on a backpack of fluids over the past 24 hours because I've been worried that she's not getting enough to drink. Today I told them how little she's had to eat and all of the radiation symptoms. I had a really good time talking with the NP about medication. She was very understanding about Ellie's drug sensitivities, and listened to what I had to say about the drugs that Ellie tolerates the best. She came up with a really good plan for keeping the nausea at bay. We will keep anti-nausea meds on board around the clock until radiation is completed on Thursday. We will use three different drugs that Ellie tolerates very well - some will be administered at the Day Hospital, and some will be given at home. I am so pleased. It is the only way we can get more food into Ellie. If we wait until she needs IV nutrition we could have more side effects to deal with. When Ellie recieved platelets, they again allowed her to take them without Benedryl. She will also be able to keep a backpack of fluids around the clock until Thursday (or longer if she needs it).

Tomorrow we go in early for blood work and her first anti-nausea med before radiation. If she doesn't need any transfusions, we can come home until the afternoon radiation. Then we get a break for the weekend!! No traveling back and forth for appointments. Just resting and eating (hopefully). Then Mon-Thurs. radiation twice a day. I just hope that Ellie can remain fever-free so that she can stay out of the hospital! It would be wonderful to keep her home. The next few days are when she is at the most risk for infection because her counts are so low.

Thank you all so much for your concerned comments in response to my middle of the night plea for prayer. Last night was so hard, but I feel much calmer today. We have a plan that I feel comfortable with - it gives me hope for getting Ellie through the next week of radiation, especially getting her to eat. I feel drastically different than I did this morning after such a tough night, as I was sitting on the radiation table holding Ellie's head while she threw up - while the technicians stood their waiting to start the treatment. I felt so helpless watching Ellie in the mask on that table, wondering how on earth she would get through the week. As usual, God provided a way. The hard things don't always magically disappear, but often God's answer is a path that begins to take shape in my mind's eye when all I saw before was a hazy uncertainty. Even as I'm typing, the song that's singing Ellie to sleep on our CD player says: "When the world's gone gray and the rain's here to stay, [God's] still good." I feel sometimes like we've been blindfolded, spun around, and placed in a forest. When the blindfold comes off and we look around disoriented, it sure helps to discover that we have a compass that points to True North!

Wednesday, March 21, 2007

Hard Night

I just wanted to get out another quick update to ask you to pray for Ellie. She has had a very rough evening. I'm hoping that it's not from the effects of the radiation, but I kind of think that it is. Right now there are so many things going on for Ellie, and tonight it was just too much. John and Ethan got on the web cam and Ellie cried her eyes out for missing her dad. She had some stomach and head pain throughout the evening, and with her low blood counts, she has been so tired and has lost her appetite. Ellie finally got to where she was feeling ok, then she ended up vomitting. We have to give her a shot every night for about 2 weeks. Mom is here now, so it has fallen to her to take John's place in giving the shot. (We will have to be desperate for me to be able to do it.) Tonight the numbing cream didn't work like it usually does, so that was traumatic. All in all it has been a long gruelling night. Mom and I are physically and emotionally spent, but no matter how bad that is, it's much worse for Ellie. I honestly can't remember the last time I saw her so miserable. She finally just fell asleep (it's almost 1 a.m.) holding her daddy's shirt and cuddling with Grandma. So please remember Ellie tomorrow as she has more radiation... I just don't know what to expect. I only know that when we get there, God will be there ahead of us and He will be enough... no matter what. Thank you.

Another Day in the Life...

Hi again! Thank you all for the comments on my last post. I appreciate all of the encouragement, and I also appreciate that the drug discussion was opened up. I would be very surprised if everyone out there agreed with me. I've come to realize how personal this issue is for people, and it is compounded even further when children are involved. I have watched so many parents around me struggle with the daily ins and outs of their child's care during cancer, and I've come to believe that we each must simply do the best we can with what we have and what we know in each moment. Every child and family is different, and I know that one formula will not work across the board for all. Truly the only thing that we have in common as parents is that we know our own child. I do welcome discussion about it because the best thing that we can do is to pay attention and think. The more engaged my brain is on this issue, the clearer I can think to make decisions. Every day I feel the pull of the current - it would be so much easier to get swept up in it all and just let what happens happen. Never question, never give input and observations, go with the drugs even when my instincts may point to the contrary... Every day I struggle with the feelings of wanting to stop trying so hard; thinking so hard. Because the truth is - drugs are easy. I don't think that drugs are evil. So many people's lives have been saved through the use of drugs. I do get that. And believe me, I have found myself THANKFUL many times already for the effects of some medications. (My favorite being the one used to knock Ellie out for the bone marrow biopsies!) But the other side of the coin is that I have seen Ellie (and others) also suffer reactions to drugs. My position is not to reject every drug - it is to question every one. It is the questioning that is exhausting.

Ellie had her first dose of radiation this morning. She cried a little on the table because she was afraid and because the mask that covers her head and holds it still is tight and hurts her bald head in a couple of places. John is so good at calming her, but he had to leave the room during the radiation. He watched her on a monitor right outside the room the whole time. It only took about 15 minutes. Yesterday the set up x-rays took much longer and were way more traumatic than the actual radiation. She then had another dose this afternoon. Since John had already left for Florida, I had to take his place. Ellie did great! John got her through the hard part. She knew what to expect, so she just popped right up on the table and didn't move a muscle the entire time. I was so proud of her. She was all smiles when they let her out of the mask. She will get radiation to her head twice a day for 4 more days. I had a harder time than I expected to. It is just hard to watch her held down on a table and to have to trust that everyone knows what they're doing and that these rays being fired at her head will be done precisely where they should be. It was just unnerving. This radiation will be to the tumor in her head as well as the bones around her orbits and also her skull. The radiation to the skull is done very shallow - it will not penetrate into her brain. (Or so they tell me... difficult to remember when watching her face covered in a plastic mask with marker lines all over it.)

Ellie in her mask this morning - all set for her first treatment:

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Ellie also hasn't been eating well and it's been difficult to get enough fluids in her since returning from the hospital. Today we came to the Day Hospital between radiation appointments and she was able to get fluids and a platelet transfusion. Her platelet count was 8 today! She bumped her arm on the door jam last night and it bruised and swole up with an egg sized knot. We also found out today that her white count is ZERO. This is the point after chemo when Ellie tends to feel the worst - just down and tired and overall blah. So the fluids were a welcome relief. She has a high probablility of landing back in the hospital with a fever over the next few days because of the low counts. So we go day by day... We shall see what tomorrow brings. I will let you know. Thank you all for standing with us and holding us up each day. It makes all the difference in the world!

Monday, March 19, 2007

Going "Home"

The results of Ellie's blood and urine cultures showed that there are no infections - the UTI cleared up as well. So the antibiotics have stopped and they are sending us home. It will be nice to get back to our room. Ellie's looking forward to it.

Since Melanie's still here (she's leaving this evening) John and I went out again last night. (That was about the third time we've gone out and celebrated our anniversary because we keep thinking that we won't get another chance...) It's just nice sometimes to get away and wander around looking at things. It was so cold last night, but we had a great time. We were able to see Grand Central Station, and we tried to see the Plaza Hotel (Ellie just saw Home Alone 2 for the first time so we wanted to get pictures). The place was CLOSED for renovation! We went to a side entrance and peeked in the door. It was a lot of fun anyway. Today is our actual anniversary, so we just looked at each other and laughed and said "happy anniversary".

Ellie has enjoyed spending some time with a new friend - John Sumrall. Someone who visits this blog is friends with the Sumaralls, whose son John also has NB. Their family came to NY just before we did, so this mutual connection put us in touch with each other. (Thanks, Janet!) It has been great to get to know their family. John just had surgery to remove his primary tumor, and then has had a round of chemo. He was in the hospital when we went in over the weekend, so Ellie and John spent some time playing leggos. Please remember John in your prayers as well. He's such a little guy to be hit with so much - surgery closely followed by chemo. Now he has a fever...

So far the day has been mostly quiet... mostly. Ellie slept very late, but awoke agitated and with stomach pain. I think that there have been too many drugs all at once, and it's possible that she's developing sensitivities to some things. She also has a little rash... The answer to everything seems to be more drugs, so we're trying to take a step back and ease off because I don't like getting to place where we start treating drug reactions with more drugs if the reactions aren't dangerous. She is doing well now and is playing in the play room. A man is teaching her some things on a keyboard. She has taken an interest in music these days.

The girl in our room is still loud and in pain. I came close to going over there yesterday to comfort her, but given what we have overheard... including a wet sounding cough, I'm too worried about Ellie's well-being to risk it. There's a pretty steady stream of nurses coming and going, doing their best to soothe her. It is just heartbreaking to hear and it makes Ellie nervous. I also don't want Ellie thinking that what she is hearing is an appropriate or effective way to handle pain. She has gotten more upset over things in the last couple of days than she usually would, so I'm afraid some of it has seeped in... I have had to get her to do some deep breathing and calm down while she was calling for drugs. At one point, Ellie was nearly yelling "I want something in my broviac to make me feel better... why won't you believe me, Mom?" while the nurse was standing there asking what she wanted and looking at me to figure out what was wrong with her. My mind was racing to try to figure out what to do. Ordinarily Ellie isn't quite so insistent or vocal, and it was all happening so quickly and intensely. It is so easy to just get a drug to make the crying stop and the pain go away, but I'm not comfortable making knee-jerk decisions. So often with Ellie, the emotions play such a part, that the pain is often much less than it appears. (I have witnessed this from the girl on the other side of the curtain as well...) I had to try to explain to the nurse and calm Ellie down while trying to THINK! Finally the nurse offered to get a hot pack for Ellie's tummy and I got Ellie to start doing her breathing, all the while trying to assure her that I was trying to help her and that I would not let her suffer. Ellie was convinced that she would throw up, so I finally agreed to allow a tried-and-true anti nausea drug. She never needed it. She ate a little bit and calmed down enough that she pushed through it and was fine. I, on the other hand, needed to do some deep breathing when all was said and done! I have realized afresh that I am in a new place and need to establish some credibility as a logical, rational parent who knows her child and is willing to make the decisions that go along with her care. I always feel for the doctors and nurses, though, because every child and set of parents are different in what they want and expect. (Case in point - our poor little room-mate who wants a drug for every little thing... and she wants it NOW!!) It ends up requiring an adjustment period - for both sides. There has to be some trust all the way around - you have to trust them to know their medicine, and they have to trust you to know your child. I went through this in Florida as well - you just have to become a known entity. A doctor came by to look at a rash I discovered on Ellie this morning. He wasn't too worried about it, but offered to try to find an anti-histamine to help, but since I suspect that it was caused by an anti-histamine and I think that she doesn't take too kindly to Benedryl, I had to gently suggest that we would be happy to wait and see if it would resolve on it's own, given that she wasn't having any dangerous reactions like difficulty breathing. He allowed us to wait and watch. We also had a visit from the nutritionist... more explanations of what we do and why. She was very sweet and offered help in any way that she could... there was only one incredulous comment of "you mean she actually GAINS weight on an organic diet?"

Ok, enough of the venting... I am truly thankful for the care Ellie is receiving. I'm just a little tired from the thinking and watching and communicating. It's all good, though and so very worth it. We are very involved in every aspect of Ellie's medical care. We have not for one moment felt that we are leaving Ellie's medical care up to any one doctor or team of doctors. We feel strongly that we are part of a team together with all of the medical personnel. I have been much bolder in expressing myself since the day early on when I became so frustrated that I actually totaled up the hours Ellie had been alive. It was on that day that I realized that while I have so much respect for all of the medical knowledge and training that the doctors and nurses and pharmacists have, I have studied Ellie for nearly 10,000 hours. I know HER. I know every little nuance of her personality and mannerisms and emotions. That gave me a great deal of confidence to stand up to anybody if and when I need to. I have done it before and I will do it again. For those of you who know me, that is a HUGE testament to the grace of God in my life. If a fly got in my face and yelled at me, you know that I would end up in a corner crying my eyes out. The other beautiful thing that happened during the same time when I discovered that I could stand up to anyone on Ellie's behalf was that I stood up to Ellie and told her in no uncertain terms that I was the one in charge of her care. All suggestions from doctors or requests from her would go through me and I would be the one making the decisions. It was as if the weight of the world fell from her shoulders. It can be such a confusing time for one so young... so many people coming and going - appearing to give orders to me and asking her if she needed something for her discomfort...it implied that she had a certain responsibility to know what she needed. For Ellie, knowing that Mom is the central point from which all things spin seems to bring her a peace and comfort during this crazy time. (In all of this, I should recognize that John is very involved from a big-picture decision making standpoint, but the daily medical decisions fall completely on my shoulders. We tend to divide and conquer, and I simply log more time in the trenches with Ellie.)

Sorry to get off on such a lengthy tangent. I guess I had a lot on my mind... It's just all part of this process. Thanks for being with us on the journey! We love you all.

(p.s. At some point in the middle of this huge post, we came back to the house. Ellie is doing great! She has been dancing around the room, and feeling great.)

Saturday, March 17, 2007

Last Day of Chemo

As I write, Ellie is sleeping peacefully. Things were a bit dicey just before bed - she almost threw up, but was able to get some anti-nausea medicine. She is still in the hospital. She has not once had a fever since we came in the early morning. Oh well. She has had a good day. Melanie is here for a few days, so she came over to the hospital this morning so that John and I could go get some rest. I took a LONG nap! It felt so good. I think that we should be able to leave the hospital tomorrow, pending the results of her blood cultures.

This hospital experience has been interesting. Many of the rooms here are semi-private - and ours is one of them. There is a curtain down the middle of the room and both patients share a bathroom. Our room-mate is a teenage girl who is in a LOT of pain. She has done quite a bit of screaming and sobbing, which is unnerving for me, let alone Ellie. Ellie and Melanie spent all day in the playroom. Tonight things were pretty quiet until Ellie started feeling nauseous. The girl next to us made a couple of trips to the restroom to vomit while I was holding Ellie's head over a bucket. The girl was beeping for the nurse for medicine, and then I started beeping for the nurse as well... Then Ellie's IV pole started beeping a shrill, piercing sound that I hadn't heard yet... I guess our room was having a nausious, beeping, crying kind of evening! All is peaceful now, and I think I just heard snoring from the other side of the curtain - it's either the girl or her rather unsympathetic mother. I came so close to going over there this morning and asking if the poor girl needed help until I realized that her mom was actually there! I still wish I could just go hug her...

I will let you know what tomorrow brings. As always, thank you all for your kindness to us and faithfulness to remember Ellie! This verse has brought me such comfort tonight: "The eternal God is your refuge, and underneath are the everlasting arms." Deut. 33.27 (Thanks Robyn!)

2:00 a.m. in the Urgent Care

Well, things change pretty quickly sometimes...

We left the "Day Hospital" this evening after Ellie's day of chemo and a visit with the radiation oncologist. She had a mask made today that will allow her to get radiation to her head next week. All in all it was an o.k. day. Ellie's appetite is gone, but not vomitting. Tonight once we were back "home", John noticed that Ellie felt warm and we discovered that she had a fever. After calling the hospital, we were told to bring her to the Urgent Care. We hailed a cab and went to the entrance on the hospital nearest Urgent Care, only to find that particular door locked - after the cab had pulled away. We trudged through the 3 inches of snow, around the corner to another entrance. John was carrying Ellie in a blanket with her backpack of fluids on his back. We made it to a room, where we found Ellie's temperature to be NORMAL! Ugh. The nurse took blood cultures and the on call doctor came to see us. Ellie will be admitted to the hospital for one or two days at least. She will be started on an antibiotic (along with the one she's already taking for a urniary tract infection) just in case there is an infection, but the blood cultures will not be readable for 24 hours. If nothing shows up on the cultures, then we should be able to go home. We are still in Urgent Care right now, but in another hour or so we will move up to the Pediatric Oncology floor. So much for this night's sleep. Ellie will be able to finish her chemo tomorrow. I'm not all that bothered by this whole thing other than I'm not thrilled about another antibiotic (but I do understand the need to be safe rather than sorry). I actually think that Ellie might be able to rest and recover a bit from the chemo easier when she stays in one place. All of the back and forth and getting up at a certain time to be at appointments can be time-consuming and exhausting. (Although this may be more exhausting for me than for Ellie...) It's a new part of the experience here in New York anyway.

I am so thankful that John is still here for all of this. By the time he goes home on Wednesday, he should be able to leave me with a roadmap of what to do and where to go. I'm trying not to think about how soon he will be leaving. I have had many opportunities to appreciate John's ability to adapt and thrive in a new environment. Together we make a very good team - our skills and strengths are so completely different that we make halves of a complete whole. I've always known this, but the situation we now find ourselves in reminds me afresh that God truly brought me my perfect counterpart. When John leaves, I will have help here - my mom will take the first "shift" (and I'm looking forward to having her here) - but without him I will feel like half a person... I wish every day that he could just stop working and stay here. Oh well. I am glad that he can go and lavish some attention on Ethan. For now I will focus on the fact that he's still here, and I will enjoy every moment.

I will update when I know more. We are moving up to the floor now.

Friday, March 16, 2007

Some Highlights of the past week...

It is now day three of chemo, and things are going pretty well so far. Ellie threw up again last night, but otherwise the pain and nausea have been manageable. There is nothing new to report otherwise, so I thought I would post some pictures of the sightseeing that we squeezed in before Ellie started chemo.

Monday night we went to the "Top of the Rock". The Rockefeller Building has a beautiful look out. The whole experience was just wonderful! Here are some of the highlights:

Upon entering the building, you climb up a spiral staircase that goes around a five million dollar Swarovski crystal changelier.

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New the top of the building you pass gorgeous Swarovski crystal starbursts embedded into the wall. They were lit from within the wall, and tiny animals were cut into some of the crystals. You had to search to find any - we only found two.

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There were amazing views of the city on all sides - absolutely breathtaking...

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Ellie posing on "Top of the Rock"

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One Tuesday, since Ellie's counts weren't up enough for chemo, we took her to see the Statue of Liberty. I had never been before either, so it was very fun for us. John went a long time ago, back when they let you climb up into the statue. He told us all about how he looked out of the windows in her crown.

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Our very own Miss Liberty:

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There were a couple of little piles of snow and ice on the island, so of course Ellie had to get right in there!

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On the ferry...

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We had a fun time just getting to be tourists - it was a great pre-chemo outing!

Wednesday, March 14, 2007

Day One of Round Six

Today Ellie started chemo! We took her in to the "Day Hospital" for blood work early this morning, and found out that her counts were high enough to begin chemo. We were there until 6:00 p.m. Ellie was given three different chemo drugs, one anti-nausea medication, and one drug to protect her kidneys. It was a full day, to say the least. Having chemo on an outpatient basis was a totally new experience for us, but I have to say that I was surprised to find it a good one. Everything here is done very quickly and space is at a premium, but I've noticed that it is all done with great efficiency and purpose. Everything is done for a reason and in a very specific way. At the end of the day, we were sent home with a backpack full of fluids that Ellie was connected to. We will go back first thing in the morning and repeat the day (minus one chemo drug). Ellie loved coming home, and I have actually felt relieved to be back to the room as well.

I was forewarned that New York would be a change of pace and that I should expect a good deal of "culture shock". It is true that life is vastly different here than in Florida. For one, things seem to move at lightening speed and with a great deal of noise. When I finally make it back to the room, my whole body seems to be humming from the frantic energy all around outside (and in the hospital). Coming into the cool and quiet of our room is like stumbling upon an oasis in a desert. My mind is often racing to keep up with the information coming at me with great speed, amidst the background of never-ending visual and audio stimulation. I think that I am gradually adjusting, and I don't find the differences to be bad... just different. I find that I really love the fact that things are done efficiently. It is a beautiful thing to see. In this fast-paced city, the one common thread that I have seen is how wonderful the people are. I was prepared to be buffeted. I expected that my laid-back, easy going and often timid manner would be eaten alive in this city. Evertime I venture out of my safe little room, I come into contact with friendlier and more helpful people than I ever expected. One man gave me his seat on the subway and two different men helped John carry Ellie in her stroller up long flights of stairs (and they didn't see her bald head before offering to help). Numerous people have stopped to give directions and advise, both on the street and in the hospital (on more than one occasion in the hospital, someone has changed directions to literally walk us to the correct elevator or location). Without fail, everyone has been just wonderful. Granted, everyone is rushing to and from wherever they are going so nodding, smiling, and making eye contact are generally not done. I think this is because there are just so many people everywhere and walking is a form of transportation here... you would never get where you are going if you stop to visit and smell the roses. You probably would also run into a certain number of crazy or harmful people if you opened yourself up to the general masses. Anyway... those are my observations... I have been pleased with many of my experiences here, but I am just so tired. It has been a lot to take in and adjust to, and the amount of walking is so outside of my comfort zone - literally. I am so out of shape (she wails, as if she is just discovering this for the first time... sigh...).

Well, I need to get to bed. It is late, and my poor little sweetie threw up not that long ago (somewhere near the beginning of the last paragraph, to be exact). She is now sleeping quite peacefully, but it is bound to be a long night with all of the fluids going in... Thank you for praying - please remember Ellie during the next three days of chemo, and for some days after. She will be fighting nausea and stomach pain and probably some jaw pain. After chemo she tends to have stomach pain and we always fight hard to keep the mouth sores away... so far she hasn't suffered from those.

Please also remember Ethan. He misses us so much. We have seen him a couple of times on the web cam, but it makes him too sad. When he sees us, he wants to touch us - seeing with his eyes is just not enough (he's so like his daddy in that way). I can see the struggle in him - he feels like he should be able to just reach through the screen and hug us, but then he can't. Talking on the phone is a little better, but it reminds him that he's not home and he gets sad all over again. Overall Ethan is happy and well - staying with Stan and Pat keeps him on an even keel: peaceful and predictable, which is very good for him. Then he gets to go to Mom and Gary's (he's there over night tonight) which makes him happy to have a fun outing. We miss our little buddy so much. It hurts me to see him sad, but then I have to rely on eyes of faith to see past that and remember that God will not let go of him while He's taking care of Ellie and us here in New York. The longer I live, the less I am able to trust what I see and hear with my physical eyes and ears. And the more I rely on who God IS. It is then that I see past my little boy's tears and notice God's arms holding him tight. My earthly eyes get in the way just a little bit, though, because those Heavenly arms somehow look like four loving grandparents...

Tuesday, March 13, 2007


We are back from the hospital, and as it turns out Ellie's platelet count was too low to start chemo. False alarm. We will go back tomorrow for more bloodwork and hopefully start chemo.

Since we now have no plans for the day, we decided to take Ellie to see the Statue of Liberty.

I'll be in touch...

Chemo Begins Today

I just wanted to get a quick note out to let you know that Ellie will be starting on her sixth round of chemo today! We have to be at the hospital at 7:30 a.m. This will be a new experience for us, as the chemo is done outpatient here. We will go to the hospital every morning and will return "home" later in the day. I think that it will be o.k. and Ellie is glad to be able to sleep in her bed every night. It is just a little disconcerting for me, but I think that we will get used to it. I will let you know how things go...

Sunday, March 11, 2007

Seeing the Sights of New York City

Hi everyone! Thanks so much for the sweet comments about our good news. We have had a busy several days, and I'm finally able to sit and get out an update.

On Thursday Ellie had more stem cells harvested in the morning, then went to an opthamologist in the afternoon. The doctor examined her eyes and looked at the MRI of Ellie's head. He was able to determine that 90% of the optic nerve to her left eye was completely damaged by the tumor, meaning that she will never regain the vision in that eye. This was not a surprise to me. He also showed us the MRI of the tumor in her head. It is not quite as large as it was origionally, but it is still there. He was the first person to really show us exactly where the tumor sits in connection to her optic nerves, and we were able to see with our own eyes that it is very much in the center with more growth off to the left. The doctor does not like how close it is to the right optic nerve, and plans to keep a very good eye on that. He said that with chemo and radiation, the tumor should shrink and there won't be a problem. So really, there is nothing to be alarmed about, but we just have to be watchful. It is unlikely that surgery will be necessary to remove that tumor, but he said that if it is, he would be happy to assist to make sure that her right optic nerve is preserved.

On Friday we met with the doctor who will perform the radiation on Ellie. She was very nice and explained the process to us. The areas that will be irradiated are Ellie's left adrenal gland and some surrounding areas as well as the tumor in Ellie's head along with the bones in the sinus area. All of the radiation will be very low dosages. There may be some nausea due to the abdominal radiation, but there should be very few side effects. There are, of course, some rare but possible difficulties from the radiation and that was a little overwhelming to think of. Eventually Ellie may need radiation on the tumors in her legs, but for now the doctor is hoping to wait until it is deemed necessary because that can affect her growth.

After meeting with that doctor, Ellie had bone marrow biopsies. They took 4 samples - two from the front of her pelvis and two from the back. It was a long day when all was said and done, but Ellie had surprisingly little pain. The initial pain gave way to mild discomfort, and now she is only bothered when the sites are bumped.

It was also determined that Ellie has a unrinary tract infection, so she is on 10 days of antibiotics (twice daily). This is in addition to the antiviral that she takes now three times a day - for at least a year - to keep her from getting shingles (because of the chickenpox she had early on). Thankfully we can crush the three times a day pill up and it doesn't have any taste when put in juice. This was not the case with the antibiotic (which we found out the hard way) so Ellie finally learned to swallow a pill. This was a MAJOR accomplishment!

Tomorrow Ellie may start chemo, or she may wait a day or so... we will let you know.

Last night John and I went out after Melanie and Richard came to watch Ellie. We had some fun exploring the city. We took just about every form of transportation in this city - including the little cart that is pulled behind a bicycle! We also took a bus, taxi, and the subway. Even with all of that riding around, my feet were killing me by the time we got home. (I'm sure it had nothing at all to do with the fact that I had to wear the pretty boots instead of the practical ones...)

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We went to the top of the Empire State Building.

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We also explored the huge Macy's. The upper floors still have the wooden escalators making us feel as if we were in "Miracle on 34th. Street" and we made sure to exit the building onto 34th. street.

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We finished the evening out with a nice dinner. It was a great time all the way around!

Today we all went out together and took Ellie out for a fun time before chemo starts. She had a blast! We went to Rockefeller Plaza and tried to be seen outside of the Today Show. We only made it on for a few seconds.

Melanie & Richard:
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A very sweet lady told us about the American Girl Place, so Ellie HAD to go there. Melanie brought the American Girl Dolls that her girls had as small children, and Ellie has the "Bity Baby", so she wanted to get some accessories. It was little girl heaven in that place! So much to see. There was a brunch in the cafe (yes, there was even a cafe in there!) so Melanie and I went in with Ellie. (John and Rich were off running errands and such.) It was so much fun. Everything was black and white and pink, perfectly served and beautifully put together.

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In typical Ellie fashion, she got hot and tossed her hat off, so it was quite obvious to all what the situation was. We saw the lady who told us about the store, and she bought Ellie a photo album to remember her day. She was so nice. Later a man walked up and handed Ellie and $20 bill to help with her shopping. Then a lady from the store helped in the dressing room where Ellie was trying on clothes to match her doll. She was so sweet and made Ellie feel like such a princess! She gave her all kinds of special things - acessories for her doll as well as fun activities for the hospital. It was such a wonderful experience (thanks Maria!).

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After spending hours in that store, we made our way to the gigantic Toys R Us. There is a farris wheel in the center of the store, so John and Ellie had to ride. Of course Ellie charmed the young ladies who were on the ride with her! They were very sweet and friendly to her.

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After eating a late lunch in a nice little cafe, we made our way back "home" and Melanie and Richard took off. Ellie fell fast asleep this afternoon - this from the girl who almost never naps! We wore her out. She woke up asking if the day was all a dream, and smiled so big when I told her that it really happened.

I hope that you all had a wonderful weekend. Thanks for all of your love and prayers!

Wednesday, March 07, 2007

Good News...at Long Last

I love having something good to report! The results of Ellie's CT scan showed NO adrenal tumor! It was a small tumor to begin with, but as it was the primary it needed to be removed. Now that it no longer exists... there will be no surgery! We are so happy and relieved. She will eventually need radiation at that site, as the primary tumor is made up of both fast and slow growing cells. The chemo often kills all of the fast growing cells, but the slow growing kind can lurk quietly in the background, just waiting for the opportunity to multiply and send out new baby tumors to various and sundry locations.

The results of the MIBG scan revealed that there is improvement in the other tumor sites - many do not show up anymore, but they are not all completely gone. Still - there is improvement and for that we are so thankful. The scan only showed some remaining activity in the tumor in her head and the ones in her legs. None of the others were seen - spine, ribs, or pelvis.

We do not yet know whether Ellie's bone marrow has cleared. She will be receiving bone marrow biopsies on Friday. (This was supposed to be done during surgery, so that was the only test not yet performed.)

The stem cell harvest that was scheduled for tomorrow actually happened today! Everything happens fast here. Her white count was high enough yesterday, so we came in this morning and during a very easy, painless procedure, a little over 5 million stem cells were harvested. They would like to have a little more than that, so we will go back in tomorrow for more. In the afternoon, Ellie has an appointment with an opthalmologist. The a busy day on Friday with bone marrows...

Saturday and Sunday promise to be restful and uneventful, medically speaking. Melanie and Richard are planning to come and visit us and have offered to keep Ellie occupied so that John and I can get out and explore the city. We are so excited! Our thirteenth wedding anniversary is on the 19th., so I think that we will go out and celebrate early. (These days it's better to celebrate things when the opportunity presents, rather than waiting for the actual day.)

On Monday (blood counts permitting) Ellie will go in for chemo round #6! This is all happening so quickly... we were all geared up for surgery... planning and dreading it... and now chemo? The doctor explained to us that it is still important to do at least one other round of chemo because it is best to get as much of the cancer as they possibly can before starting the 3F8 Monoclonal Antibody. This treatment is the most effective when there is very little cancer left in the body - larger masses are much more difficult to get. This makes a lot of sense, even though we don't like seeing her go through another chemo. We would like to see her gain a litte more weight before going into chemo, but at least now we don't have the surgery hanging over our heads. I don't even know if it has all sunk in for me yet. I can't switch gears that fast, but I'm trying.

So that's the scoop. You are probably just as stunned as I was (and still am) so I will leave you to soak it all in and revel a while in the good news. You have all been so very faithful to share in our sorrows and burdens, that it feels wonderful to share our joy with you this time! Thank you for your prayers for Ellie and for our whole family. (And please keep remembering our little buddy boy... he's so far away and we miss him so much.)

Monday, March 05, 2007

So Very Tired!

Wow - these past days have been something of a whirlwind! We have been back and forth to the hospital for tests. Yesterday we didn't have to do anything, so we had a nice lazy day. Our big excitement was going to a store. It is amazing to me to be able to walk anywhere you need to go. We ducked in this little doorway into a place that probably held as much stuff as Walmart, only it was like a maze in there - down stairs, around corners. There were all kinds of cool treasures tucked in all kinds of hard to get to places...

John has been a scouting machine! He takes off and discovers stores and places I never knew they had so close at hand. His sense of direction amazes me. (I would get lost in a brown paper bag, so for me walking out the door and moving in one direction with purpose is a foreign feeling...) I just follow close to him and we always end up where we need to be. One of these day's I'm going to have to start paying attention, but for now it's just so easy to say "honey, could you please go and..." He also has the goodness and tact (not to mention deep understanding of who I am) not to look shocked when, after 4 days of hospital trips I have to ask "so when I go out of the hospital, I go which way?" Oh, and did I mention that I have a kind of phobia of crossing busy streets? I may need to be reminded from time to time that I really do consider this a grand adventure...

Today we spent all day at the hospital. Ellie had CT scans, blood transfusions, and it is now 9:00 p.m. and John and Ellie are just coming home from the MRI. (They weren't kidding when they said this is the city that never sleeps.) Even when overwhelmed and tired, we can see how good God was to bring us here. Everything about it is right! It just moves at remarkable speeds. Ellie is holding up as well as can be expected. She's coming out of her shell, and feeling very happy about our room at the R.McD. House. She refers to it as "home" and I can identify with that sentiment. It is our "spot". We come in from the big world out there and step in the door to our things and our space and we feel at peace. Tomorrow Ellie has an Echo-cardiogram at 12:30 and that will be it for the day. Wednesday we go back for blood work (and if needed, transfusions), and the Doctor is hoping that Thursday will be the stem cell harvest. That's our week in a nut-shell.

So... thanks for praying. We appreciate it so much - and we need it. Just knowing that so many people out there are remembering us and care what happens in Ellie's day makes this huge city seem just a little smaller. It brings a smile to our hearts. Thanks!

Saturday, March 03, 2007

Just thought you should know...

I'm sitting in front of a huge window, drinking a cup of Starbuck's coffee, looking at the tall buildings standing in sharp relief against a perfectly blue sky with fluffy white clouds floating by. Some of the rooftops and building tiers have trees and plants scattered around, breaking up the miles of brick and cement. I can just imagine how fun it would be to sit on such a terrace in the springtime and sip my coffee. Actually, I will probably be here come springtime, and will do just that! (This building has a couple of outdoor seating areas.) John just took Ellie to the hospital for her MIBG scan, so I have a couple of hours to rest and gather my thoughts... or sort medical paperwork... hmmm which shall I choose?

My heart has had quite a workout over this past week. There is such peace being here, knowing that Ellie will recieve the very best treatment for her cancer, but everything is so unfamiliar and I have a problem with sudden changes within my world. In situations such as these, my natural response is to curl up in the fetal position in a corner somewhere and not move. You know, I think that I can identify very closely with opossums - if I could just lie very still and slow my heart rate down enough, maybe anyone passing by would just think I'm dead and keep on moving. Interacting closely with people when I'm stressed takes so much effort and energy for me, that I just want to hunker down and become invisible. Still, I have been concious for years of how God has been ever so slowly moving me out of my comfort zone - in hind sight I can see that it has been in preparation for this time in my family's life. When I look back, it is so easy to see how lovingly and slowly God has worked on my heart. I am acutely aware of how gently God has dealt with me... always working, moving, pushing - but never suddenly. When I look back at any of the major events in my life, I can always see the months or years of preparation that God has done in my heart and mind to bring me to that place. This is no exception.

Years ago we came across a small note in my dad's Bible, that the prayer of his heart was to really KNOW God. I have often reflected on that, and I know with every fiber of my being that God answered that prayer. Most of you know the story, but some of you are new to our lives, so I will give you the nutshell version...

My parents were missionaries in Panama while I was growing up. They worked for years in a little village, learning the language and teaching people about Christ. In 1993 my dad and his two co-workers were kidnapped by Colombian guerrillas, and their wives and children were left behind. It took over seven years before enough evidence came to light to determine that Dad, Mark, and Rick were killed in 1996.

I have often wished that I had notes from Dad about what he was thinking and learning during his years in captivity. I know that he would have been driven to write it down... to keep a record for us of what he was going through. I know this, because I am driven in the same way. Even though I don't have any physical proof in writing, I just know that God was ever present in his heart and always at the forefront of his mind. I know that God must have answered Dad's prayer and given him such a real knowledge of His own divine nature. And I somehow suspect that Dad prayed the same for me. I know that he wouldn't have wanted me to suffer, but more than anyone, He would have realized that drawing near to the heart of God Himself is a treasure so far beyond anything we can imagine. Sometimes I fight the suffering and just want out, but even then I can see God moving and working and calling me closer. I am so glad that He doesn't let me go.

I just came across another Twila Paris song in my journal...
"A Heart That Knows You" (words and music by Twila Paris)

Thought I knew so much
But I've got so much to learn
Got so far to go
So much left to burn
Thought I knew You well
But I struggle in Your hands
Here again You bring the truth before me
Freedom only comes when I let go
This I know...

You would never lead
Where You had not been
Every road I face
You go down again
Time has come and gone
Since You walked into the flame
Still there is the pain before the glory
And it is Your will I must embrace
Oh for grace...

...And a heart that knows You
Is a heart that can wait
Die to the dearest desire
...And a heart that knows You
Is a heart that can still celebrate
Following love through the fire

It may be for my sake
Just to help me grow
Maybe for Your Kingdom, Lord
I don't need to know...

The last dregs of my coffee are cold... the clouds are still floating by... my paperwork is still not done... but I don't care. I'm in New York City. I'm scared and uncomfortable. I'm nervous and excited all at the same time. And I have a loving Savior who has been down this road ahead of me; who speaks a word in my ear to turn to the right or the left; who holds my hand and wipes my tears. I am home.

Friday, March 02, 2007

Alive, Well, and not too Traumatized...

I am happy to be posting from the wonderful Ronald McDonald House in New York City! We have arrived. Thank you for all of the comments! I have heard that some have had trouble commenting because you need to enter an email address for me. I had to switch to the updated Blogger, and so some things may have changed. I'm going to give you all my email address. Please understand that I may not be able to respond to all emails if I receive a bunch, but I do appreciate reading them. For the most part, commenting on this blog is best if you just have a little something to say, but please feel free to email me if you need a response or want to send something personal that you don't want published on the blog. (Or if you're still having trouble commenting.) Also... if you have sent something to Ellie at any point and have not heard from us please email me... I have had a terrible time keeping track of names and addresses and who has sent what with all of the back and forth to the hospital, but I can do email much better than snail mail. I would love to thank you and let you know how much we appreciate your thoughfulness. (Jill Heins, please email me... I have been wanting to contact you, but don't have your email address.) My email is: "seskees is at hotmail dot com -- please replace is at with the @ sign, and dot with a '.' "

So... where to begin... Thursday we boarded a corporate jet and flew to New Jersey. It was like something you would see on TV, an experience most people only dream about! The fabric covered walls of the plane were trimmed out in dark, glossy wood tones. The lavatory was beautiful and larger than on commercial flights. The aircraft had 6 large leather seats and one sofa (complete with blankets and comfy throw pillows) along with a fully loaded galley. We were seated in the rear in two seats that faced each other with the sofa accross the isle. I actually stretched out fully and took a nap during the flight! John was determined not to sleep, but the cushy leather, fully adjustable seat claimed him and before long he was out cold. (The chair was able to ease out into the isle, swivel, and lean back... so of course he had to play with all of the buttons and such before he could relax.) I woke up once to see Ellie curled up in the plush seat absorbed in her nintendo game. She never even closed her eyes. A bag of catered food was waiting for us, so we pulled out a table between the two seats and enjoyed our meal with all of the comforts of home. We were told to help ourselves to anything in the galley, so mid-flight I made my way forward and firmly planted my feet so as not to fall over and began preparing two cups of coffee for us to enjoy. I wrangled the pot out of it's resting place, only to discover that the base smoothly slid out like a drawer. Then I began to pour, and in the process of trying to keep the lid up and pour carefully AND keep my balance, the hot coffee came out in a rush all over my hand and the cup I was pouing into. Little rivers of coffee started running all over the counter. Inside, I was mortified, but I tried to emulate the suave, unflappable motions of the many flight attendents I've observed in the past. I showed no pain, and smoothly mopped up my mess and salvaged two small cups of coffee out of the whole thing (I was NOT going to even touch that coffee pot again!) I wobbled back to my seat and John's sympathetic smile. The two executives on board were very kind, treating Ellie like a star, and graciously welcoming our family on their flight. We were truly treated with such dignity and respect by each person we came in contact with through the Corporate Angel Network. When we landed, the executives boarded a waiting helecopter, which we thoroughly enjoyed! (We are so easily amused and impressed.) Once the helecopter took off, we disembarked (on the way out, Ellie snagged a cookie from the galley and put it in her coat pocket, quite literally "helping herself"). Melanie drove right up to the plane and all of our bags were loaded and we were on our way. Talk about getting the royal treatment!

You should have seen us driving through the streets of New York. We were quite the tourists, craning our necks to see all of the buildings and people and... everything! It was great. We pulled up to the Ronald McDonald House and actually found a parking place. We were given a tour of the facilities which are so nicely done. They bend over backwards here to make people feel welcome and to make sure that all of the needs are anticipated and met. There is a beautiful living room and play room along with kitchens and a large dining room. We have a very nice room, and I only had to "tweak" the furniture arrangement just a little... :-)

This morning we had our first appointment at Sloan Kettering. Everything here moves so quickly, which is wonderful but a little unnerving at the same time. The doctors were great with Ellie and easy for us to talk with - they spent a long time answering all of our questions. Ellie got nervous when we arrived at the hospital, and she had a really hard time with all of the differences. Even though everyone was so friendly and helpful, it is just different from what she's used to. I know that in no time she will be running all over, greeting people by name as if she's been here all her life. It just takes time. When her blood was drawn (through her Broviac, as usual) Ellie actually threw up. I was so surprised because she hasn't been nausious lately, but she hadn't eaten well this morning and she was so anxious that it all caught up to her, plus they took a quite a bit of blood. There was so much information to take in today, but overall it's been very good. We are continually impressed with the efficiency and professionalism that we see here, both in person and over the phone. It is amazing to be in a place that specializes in Neuroblastoma. Now that we are here, there is simply no doubt in our minds that this is the place for Ellie. (Not that we really had doubt before.)

What is the plan now, you ask? Well... Ellie will have tests tomorrow, Monday, and Tuesday. At some point during the next week or so she will have her stem cells harvested, and then as of now she is scheduled to have surgery on March 14. We had no idea that this would all happen so quickly! After surgery there will be one or two rounds of chemo. The good news is that the drugs used will NOT be hard on her hearing! After chemo, some tests will be repeated to determine how the cancer has responded. Then... treatment with the monoclonal antibody and radiation. So far that is the plan as we understand it. On Monday or Tuesday we should know more. Depending upon the results of the tests, some things could change. Pretty much nothing is set in stone or "standard" when it comes to treatment of NB.

Melanie was able to stay with us until this evening. She just left to drive back to Connecticut. She will be able to come back and forth some. It was wonderful to have her with us for these couple of days! We just looked around the room at each other and realized... we are alone in New York! Deep breaths... try not to panic... I'ts ok, just a little unsettling in the pit of my stomach. You know, the biggest adjustment for me is that I'm HOT all the time. It's so cold outside that the heat is cranked up high inside. I'm used to being cool inside all the time to escape the heat outside. It doesn't help to go outside because it's cold and you wear coats, but walk fast. So by the time you go inside you're hot AND sweaty. Aghhh! I'm not complaining... I just can't figure out what to wear when. Oh well. I am enjoying the cold when I go outside. It's always fun to have a change of weather. It was drizzly today, which was fun because I LOVE a gray, rainy day. It makes me happy. I know, I'm wierd... don't mock me!

I will be posting pictures as soon as possible. It's a little tricky to find the right spot in the house for the computer to work properly... we're trying to learn the ins and outs. I have some good ones of the airplane and plan to take pictures at the R.McD. House. Bye the way... there are fish tanks everywhere - in the house and hostpital!! Thank you all for your love and prayers! We love you.