We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Monday, 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.)


At 5:07 AM, Blogger Jeff Roberts said...

I'm touched by the fact that you actually have the presence of mind to continue to parent in such situations!

At 6:18 AM, Blogger Mrs said...

Happy anniversary, John and Sarah! Praising God for one of the best things you could give Ellie and Ethan right now . . . parents who love each other!

At 6:16 PM, Anonymous Anonymous said...

I love reading your daily blog and my prayers are certainly with you and especially Ellie during this journey. I do, however, sometime worry that poor Ellie has to suffer at times because you aren't fond of medicine. I have to tell you, having just witnessed the passing of a very dear friend, there were not enough drugs in that hospital to make her comfortable but what drugs were provided to ease her symptoms were welcome and I surely hope that you would know that drugs are created for a reason and that sometimes Ellie might not feel like "working through" the pain. Sometimes, she might really NEED the drugs to help her through it!

At 7:52 PM, Blogger Ellie Skees said...

Thank you for your comments. I do understand your concerns. I'm not sure who you are, and if you know me personally or not, but I would never allow my daughter to suffer. I believe that the drugs are more effective if they are saved for the times when they are needed the most. If and when Ellie truly needs something for pain, I would like for her body to receive the full effects of the drugs and not already have developed sensitivities to them or be desensitized due to over use. (Because of her personality, I can see that her emotional state is closely linked with her ability to handle physical discomfort. So dealing with the emotions first often takes the edge off of the pain...) If the time comes when she needs drugs to be comfortable up to the end, then I will be the first one in line to request them. Right now we are not at that point, and I would like for Ellie's body to be strong enough to fight this cancer effectively. I believe that we have seen this principle at work in her many times already. I can totally appreciate your point of view, and can only imagine how horrible it was to watch your friend suffer. Having that fresh in your mind must make it especially difficult to read my opinions concerning medicine and pain control. I hope that you understand that Ellie's pain and discomfort issues right now are extrememly different from where they would be should she be dying from her cancer. I also hope that it will reassure you to know that I am continually keeping one eye fixed on Ellie's present situation and one on her future possibilities and ever humbly receiving guidance from my Lord Jesus in each moment. Thank you so much for your concern for my little girl - your compassion is most appreciated!

At 7:55 PM, Blogger Ellie Skees said...

p.s. I forgot to mention that Ellie has already received so many drugs along the way... many have been very effective in controlling pain and nausea. I'm afraid that I just haven't talked about those. I feel like I'm always walking a kind of tightrope between too few and too many drugs. It's a balancing act, but one that the grace of God has been sufficient for.

At 8:19 PM, Blogger Ellie Skees said...

p.s. to the p.s....(this really won't go on forever, but I keep thinking of things.)
There is so much background information that I haven't shared, that this might help put it all into context. There are some very intense drug reactions and sensitivities on both sides of Ellie's family tree, so we have seen first hand how much suffering can come from being given certain drugs. We have been noticing that Ellie gets some pretty extreme mental agitation when given certain drugs, and she was in the middle of such a reaction when she was yelling for medicine the other day. I forget sometimes that everyone reading the blog does not have all of this background on the situation and some of what I say can sound pretty extreme. We have just found that when trying to isolate and identify which drugs Ellie is reacting to, it helps to step back and watch and wait before "mudying the water" so to speak, with more drugs. We also frequently use the pain scale that the nurses in Florida introduced Ellie to, and we find that when she takes the time to think about it, Ellie's pain is most often at about a 1. I am so thankful that you commented so that I can clarify. Thank you so much! - Sarah

At 10:14 PM, Blogger tamibernard said...

You are amazingly level-headed! I praise God that He is giving you the strength and skills needed for this time.
We have been reading the blog everyday and praying for Ellie.
Tami Bernard (Toreson/Susanville)

At 7:37 AM, Anonymous Rob Charlebois said...

John, Sarah and Ellie,
My son Zachary is also here being treated for NB. We are staying at the RMH also.
John - I enjoyed speaking to you last night. I hope you have a pleasant trip to Florida and we I hope to speak to you further when you return.

Sarah - I enjoy reading your blogs. You write very well and I agree with your position on all of the drugs that are offered to our children.

Ellie - I am glad you are back here at the RMH. We will pray for you. You have probably seen Zachary running around in the dining area.

Here is Zach's site: www.caringbridge.org/visit/zacharycharlebois

Happy anniversary also!!!!

At 9:19 AM, Anonymous Darla said...

Sarah, those of us that know you and John know you are taking care of Ellie and keeping her comfortable and safe and doing everything there is to get her the best treatment for her cancer. We know that you are leaving no stone unturned when it comes to your daughters care. You are thinking like rational parents, thinking things thru which is what Dr's wish everyone would do. Dr's and medical staff have more respect for parents that know their children and are in control of the situation. This comes from someone that has worked years in the hospitals. Keep doing what you are doing you owe no explanations. There are too many children being over medicated because of parents panicking, thus creating generation after generation addicted to drugs for what ails them. You in the process of thinking things thru are teaching your daughter to do like wise. I have the utmost confidence that you are making the best decisions when it comes to Ellie. That said anyone that does not know John and Sarah rest assured those of us that do are truly amazed by them as parents.

At 11:26 AM, Anonymous Anonymous said...

Continue to trust your ability to do what you know is best for Ellie. You KNOW her, you love her, and you are the one who looks into her eyes and know the depth of her suffering, her joy, and her strength. No doctor, nurse, or closest friend can understand what see when you tap into her needs. I admire your commitment to Ellie and would never under estimate your capability to do what is right.
Hugs: Ronalee

At 5:16 AM, Blogger Leni said...

I am new to your blog, and will be praying for you. I have an Ellie also, and will pray for your daughter when I pray for mine.

I totally understand your thoughts on the drugs. We are often questioned about our choices to use a natural route for our kids (many allergies here also) but are finding that the more we avoid the drugs, the better their bodies fight off stuff on their own.

We have never said we will NEVER use drugs, they just will never be our first choice.

Praying for your family as you continue on this journey.


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