Plans...

I've had a bit of an overwhelming sort of day... I finally just sat down and crocheted as if my life depended on it. (You should see the lovely little throw pillows sprinkled on our couch!) It was nice to have my hands busy and let my mind sort of rest a bit.

Today we began the process of making plans for the next month. We have spoken with Ellie's doctor and have been carefully weighing the options in front of us, and have decided to take Ethan and Ellie out to Montana for about a month once radiation ends. As of the latest tests (before the "light" chemo) Ellie was not yet completely free from Neuroblastoma. Because of that, she will still need surgery and more treatment. It has been over nine months now of treatments for Ellie (with some serious bumps along the way) and we believe that her body needs to rest. Given how hard the last cycle of chemo hit Ellie, and how low her weight is, we feel that she needs some time without treatment... just to eat and get stronger. A huge bonus will be spending some quality time with Ethan. Another wonderful piece of the puzzle will be finally seeing Loretta in person. She has dedicated nearly every waking moment of the past 9 plus months helping us from afar. We cannot wait to see her face to face!

I guess I'm dropping this news on you kind of suddenly, but truth be told we have been thinking about this for a while now. It has been complicated - there have been so many variables - so we have been thinking and waiting and praying... And now we just know... the time is now. For Neuroblastoma patients the focus is always getting their bodies free from this tricky and often treatment-resistent cancer, but a lesser known - but often just as difficult - struggle is getting the patients through the sledgehammer style treatments alive. Add to that Ellie's sensitivities and propensity to develop all of the rare side effects... well, you get the idea.

I realized while writing this that I have been in a down kind of mood (thus the maniacal crocheting spree). I really do believe that we are making the best possible decision for Ellie - there is no doubt in our minds that it is right. It's just that we are at the stage in the game where each good desicion has a potentially worse down side. These are the kinds of choices parents never want to have to make. But we really do trust that God's hand is in this. We don't need to know what's ahead for Ellie to know that this is the step that God would have us take for her right now.

And so Michael and Kathy will be arriving in New York at the end of next week with our little buddy in tow! We are so excited. We will get to see Michael and Kathy for the first time in over three months and we'll get to show Ethan off at the hospital. I believe that we will be heading out to Montana on Monday of the following week.

In other news... Ellie had a very un-eventful first day of radiation! We love the boring treatment days. Now that she's feeling better Ellie has also spent some time with a teacher who helps the kids on the Peds. Oncology floor. Tonight Ellie had a blast doing... homework. Go figure. (She did not get that from me - but don't tell her.) In the middle of the day John and Ellie did a reconnaissance mission to the Metropolitan Museum of Art. They only had enough time to briefly check it out - we are planning to go together when we have more time to spend - but Ellie's been begging to go to see the Egyptian wing. We watched "National Treasure" together and Ellie's all excited about the treasure. They had a blast!

I just have to tell you one more thing. A couple of nights ago Ellie was sitting on the floor with John, putting together a lego project. She looked up with a sweet smile and said "You know, I was just thinking how cool it would be if I grow up someday and have a daughter who has cancer." After staring at her a moment in wordless surprise, I finally stuttered out "Well, sweetie, it's not exactly thought of by parents as a good thing when their child gets cancer, but I guess you would know what it feels like and how to help her through it." She smiled and said something like "Yeah, that's what I meant. Besides, you could teach me how to do the things for her like you do for me." It was one of those perfectly precious times when we could see how truly happy she still is. Sure, she has her "why me" moments like anyone would, but in the end she is able to find a certain amount of contentment even in the midst of cancer. I just thought you would all enjoy sharing that moment with us.

We love you.

Home from the Hospital...

We are home! Finally. Ellie spent last night in the hospital without TPN and she did not throw up at all. Lesson learned: Ellie does not take kindly to TPN. So we are back to what we already thought to be true... there's no real replacement for good old fashioned nutritious food - taken in through the mouth. This method just takes time. Time for Ellie to gradually increase her intake - it's the slow route to be sure, but still effective. Tonight she has already eaten more than she did on any given day in the hospital. It's so nice to see her feeling better.

Today Ellie had her set-up appointment for radiation. The set up process was to make a mold of her legs that will be used to hold her still during radiation. She then had CT scans done of her legs. They were supposed to do some small tatoos to mark the spots to irradiate, but when the doctor mentioned that, Ellie's eyebrows puckered together and she let out a little whimper. The doctor immediately held her hands up and said "it's ok, we'll do something else - we won't do the tatoos." I cracked up and said "wow, you didn't even wait for the full blown wail!" She just couldn't stand to do one more thing to make Ellie upset. I was so pleased... sometimes it's the little things that make a difference. Instead of tatoos, they marked on Ellie's legs with a sharpie and covered the markings with very strong, clear tape. (The marks have to last a week and a half.)

Thursday Ellie will begin radiation to the tibia of each leg. The treatments will be twice daily on Thursday, Friday, and Monday through Friday of next week (14 treatments in all). We are hoping that she will not suffer any painful side effects from this. The doctor had told us before that she is hesitent to do radiation to children's legs because of the growth plates, but we learned a little more today regarding that. The growth plates in Ellie's ankles will not be touched. If the plates in (or near ?) her knees are effected, it will limit the growth of her legs by somewhere between 1/2 to 1 inch. In the grand scheme of Ellie's overall growth it will not even be noticeable. One big plus is that the radiation will be identical to both of her legs, so having one leg grow longer than the other will not be an issue. But the hope is that the dosages of radiation given are low enough that her growth may not be effected at all. One possible side effect is painful fluid buildup in the knees. The doctor has seen this happen once in a child, so it is rare, but we have started listening when rare side effects are mentioned... then we brace for impact.

All in all we hope for a nice, easy week and a half! We try not to expect... but we hope. For now we are so glad to be back home in our comfy little room at the Ronald McDonald House. This place is such a blessing to us. It is a peaceful haven from the hustle and bustle, and at the end of a long day (or week) at the hosptial we are able to walk in the room and be... home.

Update from the Hospital

Well... the latest news is that it's possible that the TPN (IV nutrition) is making Ellie sick. We've started noticing a pattern. Every night, after the TPN goes up (it runs overnight for 12 hours) Ellie throws up and then she throws up again first thing in the morning. She is not nauseous during the day or even mostly at night - she just wakes up suddenly and has diarrhea and throws up as soon as we get her to the bathroom. Last night the TPN went up early and she threw up earlier than usual. Oddly enough she didn't do it this morning... but we are still going to discontinue the TPN. She still doesn't feel like eating, but we will keep working on it. We will stay one more night in the hospital and tomorrow she starts the radiation treatments to her legs. (Well, I'm not sure if it's just the setup for radiation tomorrow, but either way the ball starts rolling...)

Thanks so much for your faithfulness to love and pray for Ellie. Please keep praying that she eats. We really want her to be able to get good nutritious food in - and in enough quantity for her to gain weight. Ellie's current weight is 43 pounds. We are also hoping that the radiation does not make her nauseous - it did the last time. I will let you know how it goes!

Message to the Buhls...

I was wanting to show Ellie the pictures of the baby goats, but we can't seem to find your web site. Would you mind giving it to us again? If you don't want it published on the blog, you can still leave it as a comment and I just won't publish it. Thanks so much!

Update

Sorry - I didn't mean to go so long without an update...

We are still in the hospital. There's an issue with getting TPN at home, so we are staying through the weekend to give Ellie a few more days on the IV nutrition. She still isn't eating much and has been battling diarrhea, nausea and stomach pain for days. I did see some improvement today - she began the day throwing up, but has had less diarrhea and a little less stomach pain. On the positive side, her blood counts have not fallen drastically from this chemo.

In two weeks is the annual "prom" for the pediatric oncology kids - so it's all the talk these days. Clothing stores donate fancy outfits that the children can choose from (and parents too, actually). Today one of the child life specialists asked about Ellie's size and preferences and brought three dresses for her to try on. Ellie fell in love with a beautiful aqua dress that looks adorable on her. On the big day some make up artists come and help the girls feel beautiful and they are decked out with jewelry and tiaras. Ellie is all atwitter with the excitement of it all! You know I'll be providing pictures...

We expect to have a quiet weekend and remain hopefull that Ellie will feel better each day. Thanks for your love and prayers!

In the Hospital

I'm writing from Ellie's hospital room. Ellie's blood counts dropped a bit, so she was given a red blood transfusion after which she perked right up! This is why we affectionately call this type of transfusion "go juice". Due to some kind of ordering "snafu" the TPN for tonight did not come... so we're enjoying a nice uneventful night in the hospital. A nice perk is that any medications can be given through her port instead of taken by mouth - something we're taking full advantage of! The TPN always goes on at night, so hopefully by tomorrow night Ellie's will be started.

The nicest thing to happen today was a surprise visit from one of our PICU doctors - Dr. Shaw! John was coming into the hospital this evening when Dr. Shaw was going out, and as soon as the doctor found out that Ellie was here in the hospital, he turned right around and followed John up to the room. We haven't seen him since the day after Ellie was extubated (the last time) so it was very nice to get to show him a much happier and healthier Ellie. She regaled him with stories and showed him pictures from the blog. (He was finally able to hear her voice for the first time.) One of the hard things about being in the PICU was trying to convey to all of the caring doctors and nurses who Ellie was. The Ellie that they saw was so sick and drugged that she was barely a shell of her true self. The nurses, bless their hearts, would talk to her and try to do things the way that we told them she would like them... but they couldn't see her personality or hear her speak, other than in a hoarse croak. So it was very touching to see Dr. Shaw get to connect with the "real" Ellie. In true Ellie fashion, she almost didn't let him leave - I'm convinced that he would still be here listening to her stories if we hadn't intervened... Although she doesn't remember it, she promised Dr. Shaw that she would give him a hug once she was extubated, but was unable to do so... until today! These are the kinds of moments that come along amidst all of the pain and suffering and warm our hearts... being able to see how much the doctors and nurses really care. The kids are not just medical cases to them - they are real people with names and feelings. We don't have a choice to be in this place... but they do. And I say - God bless them for it!

I will continue to let you know how things go here, but I'm expecting that this should be an uneventful hospital stay. We just may be here longer than we had thought. Another of my quirks (of which there are many - and by the end of this ordeal, I'm sure I will have confessed them all) is that I actually kind of like staying in the hospital. I can't believe I just told you that! It's sick, I know. I am always ready to go home, though. Maybe it's just the change of pace I like. Well, for whatever reason, we're doing quite well. Ellie has a playroom to cut the boredom, I have a good book (not to mention a gigantic coffee machine down the hall and a menu of gourmet food choices), and John has the freedom to come and go and burn off energy as needed. Talk to me in several days, though... I'm sure by then I'll be ready to pull my hair out.

I hope you all have a good evening and day tomorrow. I'll check back in later. Lots of love!

A down day for Ellie...

Unfortunately, Ellie is not feeling as well as we'd like. She has not had as much of a problem with diarrhea as we were told to expect, but instead Ellie is fighting nausea and lack of appetite as well as stomach pain. Today she has been unable to eat any solid food and has still thrown up once. She has been on constant fluids since Wednesday (we can bring her home with a backpack of fluids so she's able to get them from home). Tomorrow we will take her in to the hospital and spend a couple of days inpatient while she is set up with TPN (IV nutrition). We were hoping that it wouldn't have come to this, but we can't let her go without food - she just doesn't have the body weight to afford it. It strikes me as a little ironic that this is the first chemo that has caused her to need TPN and it was supposed to be the light one. She needed it of course during her time in the ICU, but that wasn't directly chemo induced... I just think that Ellie's body is too tired and spent to handle even the "light" chemo. (Plus I'm starting to think that there's no such thing as light chemo - that's kind of an oxymoron.)

We will let you know how tomorrow goes, but for now we are relieved that Ellie will be able to get some medication and nutrition that will help her feel better. While she's not constantly miserable, she is quite weak and tired. Thank you all for your love and prayers!

Ethan-isms

We've been able to talk with Ethan several times on the phone since being here, and Ethan is handling it much better than he used to. He's not as sad. I thought you'd like to listen in on a few of the conversations.

The first time John talked to Ethan since coming back to NY this time:
Ethan: "Daddy, When I heard your voice talking to Papi, I thought I was going to cry, but I didn't."


Ethan: "When I see you again Daddy, will you give me 5 hugs, or 10 or 15?"
John: "15 hugs. Or how about I just hold you and snuggle you for a really long time?"
Ethan: "Yes!"

Ethan: "Mom, do you know where the great white shark is? The one I used to play with in the bathtub before Ellie got sick?"

Ethan: "We're going to get to go to Sea World!"
Me: "That sounds good, buddy. That's going to be so fun!"
Ethan: "Can our whole family go to Sea World all together when the little peanut is better?"

As Promised... Some Photos...

I've been wanting to get some pictures out of our Mother's Day weekend. Hopefully you will be able to see how much fun we had!

This is Ellie with Shelby - her new friend from the Lukemia and Lymphoma Society who is running the New York Marathon in her honor. This was taken on Saturday, their first day of training. Ellie and John followed along on their scooter. (Sorry, I don't have pictures of that...)



And here is what one month in the hospital will get you... gorgeous fingernails! Ellie's grew so long while she was down, and I didn't mind leaving them because without hair or pierced ears a girl's gotta have something to make her feel kind of feminine. My cousin Shasta has always had the most beautiful hands - even as a child - that I've ever seen, and I'm so pleased that Ellie seems to be taking after her!



On Sunday we went to the Chelsea Marketplace - a market that John and Belinda stumbled upon some weeks ago. John wanted to take me back there, so we went for Sunday brunch. It was the neatest place! Everwhere you looked there was a striking mix of rough, raw materials and sleek industrial elements. The whole effect was beautiful. (Cece and Tricia... these pics are for you!)

You enter an unassuming doorway on the street into this:


A water feature:


Most of the floors were polished cement that at times broke away to old wooden floors. Occasionally you would come upon seats that were chunks of large stone that had been allowed to stay in their rough form and then polished to a high gloss.


We ended up eating brunch at one of the little shops in the Marketplace. The food was wonderful - very gourmet - but I must say that I've never eaten in a place like that. It was actually a store. You literally had to pass racks of clothing and tables of housewares - dishes, throw pillows, etc. to get into the seating area. It was like eating right in the middle of an upscale boutique, and even though the effect was supposed to be very chic, I had to stifle the impulse to laugh. You can see in this picture how just beyond our table is a table of houswares and beyond that a clothing rack. Like any self-respecting female I had to do a little browsing through the clothing after brunch. One pretty little dress caught my eye... it was a mere $700. You'd better believe that I double checked my hands for any traces of lunch before I even touched another item!



From there we went to the aquarium. Ellie and John had been there before and they wanted to show me some of the highlights.





Then while we were on Coney Island, Ellie had to put her feet in the ocean. I manned the stroller up on the boardwalk while they took off down the beach.





And then on to some rides. John and Ellie had a blast on the spinning rides. I did manage to take her on the teacups. Then they got me on the farris wheel. Under normal circumstances I can steel myself and get through it (I'm afraid of heights) but this was no ordinary farris wheel. It had an inner circle of cars that zip along a track. I found out the hard way that panic and nausea are a very bad combination. I had to close my eyes and pray for the end. I have never ever come so close to throwing up on a ride. Ellie and John laughed and talked through the whole thing. We don't have pictures of that ride. I do not want proof that it ever happend.





And finally, we ended the evening with hotdogs at the famous Nathan's. The one on Coney Island is the origional Nathan's. Of course that made it so much cooler! :-)



We made it home late that night after an everlastingly long subway ride, tired but oh so happy.

An Auntie's bragging rights...

Ok, I know I just posted... but I have to brag a bit about my neices and nephew! I finally have pictures of all of them to share and I can't help myself. Our neices and nephew would be special to us no matter what, but we consider ourselves particularly blessed by the way that God himself seems to have hand picked and placed our special family together, one sweet little child at a time. You see, our situation is special because not even one of the five precious children are related to us by blood. And we "inherited" four within 8 months - the fifth to be added later.

By September, 2004 Ellie and Ethan were the only grandchildren on either side of our family. And then 8 months later... there were four more. Yay!

John's sister Ginger and her husband Russ adopted Madison in September, 2004. John snapped this picture of her during church while we were home a couple of weeks ago. She is such a sweet girl and adorable to boot! (Sorry Ginger, I know she's not smiling, but I just love this picture.)



Then in December of 2004, my brother Chad and his wife Janeene adopted our one and only nephew, Elijah! This is the most recent picture I have of him, as they live in the jungles of Papua New Guinea. I'm sure the little guy's grown a ton even since this photo. He was just a baby when we saw him last! I hear that he's mister personality. Of course. He has Chad for a daddy. (Some of you out there know what I mean...)



And then in April, 2005 my Mom married Gary. We instantly inherited two beautiful and amazing little nieces - Mady and Libby - through Gary's daughter Jenn and her husband Jim. Then in November, 2006 they adopted Emma from China. We were finally able to see her a couple of weeks ago! All three girls have lots of energy (so sorry Jenn!) and love each other to pieces. And Mady never ceases to touch my heart with how fiercely she cares for Ellie.



From left to right: Jenn holding Emma, Libby, Ellie, Mady, Me holding Ethan (who is obviously thrilled with the whole photo-op).

I just wanted to share with you all how thrilled we are to be part of such a loving family and how special we consider our wonderful little adopted and inherited nieces and nephew! I just couldn't help myself... I feel much better now!

Re: Your Comments!

Thank you all for the comments on the last post... your encouragement does wonders for my spirit! It was a little draining to see it all laid out from beginning to so-called end. It still feels like we have many miles left to go, but hopefully more behind than ahead... hopefully.

One good question was posed about Ellie having completed 10 of the 14 radiation treatments to her head. Giving Ellie the remaining 4 treatments this far past the previous 10 would not gain any real positive results - the whole point of the excercise is the cumulative effect of all 14 treatments in close succession. And re-doing all 14 would be too dangerous given the fact that she has had 10 already. At least that's my understanding of it - I hope it makes sense.

And to the Buhls in Texas: Ellie says that it would be great to have a baby goat named after her. (She was quite pleased!) She has requested a picture "but only once it has fur on it". (Then she amended it to a request for one picture before and one after the fur is on it.) I'm sure that you can tell by that comment that she is not a country girl!

And in other news... Ellie has a friend! There is a new girl and her mom - new to Sloan Kettering and to the house. Also new to cancer. Her cancer is different than Ellie's, but similar (if not greater) in severity. They live directly across the hall from us. The little girl is 10. Ellie is in seventh heaven having a girl close to her age to play with. At this time I don't feel free to give out any information - even first names of the girl and her mother - as they are very private in sharing (even to their own close family members). They are from another country and English is not their first language (their fourth language, actually) but they get along wonderfully, I think. The mother is exactly my age and today I discovered that we met our husbands the same year - half a world apart. Her husband and younger daugther have not come here yet. When I see people like this, I feel like such a wimp. I have the gall to actually feel tired and overwhelmed when I have my husband with me and share the same language with my docors, and have a home only a few hours by plane away. Of all the nerve! This is a new experience for me, as I have been very leery about getting too close to people here - really letting them in. I've felt as if my heart cannot take getting too personally involved with other's pain. But as the days pass, this family is getting in. In spite of my guarded heart and in spite of the language barrier... they are becomming close. I will just have to leave my heart in God's keeping and trust that He will take care of it. Even though I get scared and want to hide in my room sometimes, there has been a certain amout of comfort for me in the friendship already. Sometimes we have to resort to careful explanations and gesturing to express ourselves, but other times we can say a lot with one look... Sometimes words are not required - we look at our little girls when they are too tired to play and are just reclining near each other and we simply know. And I am hoping that in God's perfect time and way, He might use us to convey some of His comfort to this precious family.

Thank you all again for praying and standing with us in such love and care. This whole thing is dragging on so long... I can't help but wonder how you are able to stay with us and not grow weary in your love and prayers. It just seems like too much. I know that you have lives of your own and I'm sure do not enjoy being reminded constantly of pain and suffering (especially in a child). I guess what I'm trying to say is that I am touched by your faithfulness. I know my own selfish heart and how easy it would be, were I in your shoes, to simply close my eyes and forget... And yet you don't. I am overwhelmed. We are so blessed.

Treatment Plan

Hi everyone. I'm so sorry for not posting to let you know that Ellie's surgery was a great success. She is quite sore, but not enough to take something for it - everytime I even offer Tylenol she gives an emphatic "no!". We were very happy with how well she did, and are looking forward to all of the benefits of having a medi-port... one of the greatest being no more IV's. Ellie hates getting an IV.

The big picture update is rather complicated and confusing. Thus my lack of posting. We have basically been absorbing the information and trying to sort it all out for the past couple of days. We are still waiting on a couple more test results, but we have a basic idea of where Ellie's cancer stands at this moment. Excluding the bone marrow (results pending), there are only two locations in her body showing active Neuroblastoma: the tibia of each leg (just below her knees). There is what appears to be a "calcification" in the area of Ellie's left adrenal gland - the site of her primary tumor. Yesterday Dr. Kushner sat down with us and explained the possible upcoming treatments. The confusing part is the timeline. We are extremely pleased that Dr. Kushner is taking into account how fragile Ellie's body is right now given all that she's been through. He has told us that while Ellie still does have some disease present, it is at a "manageable" level so he will be able to move slowly with some things and pay attention to what Ellie's body is able to handle at each step. It came as something of a shock, but he also told us that he feels that Ellie will need to have surgery to have the calcification removed. As difficult as it was to hear, I must admit to being a little relieved because I've always felt nervous about leaving that area alone and hoping that radiation would take care of any possible remaining cancer cells. I have had the thought before that I want a surgeon to actually lay eyes on the inside of Ellie's body so that we will know what is going on in there. Dr. Kushner mentioned that it is possible for a patient to be opened up for one area to be removed, only to find that the cancer has spread elsewhere - such as the lymph nodes. Because the cancer is reasonably stable in Ellie's body right now, we do not have to rush her in for surgery before her body is able to handle it. I'm so happy about that.

I thought that now might be a good idea to post a past, present, and future treatment timeline... I've included specifics that might not be of interest to everyone, but can be helpful to other parents of kids with NB. Most of you will be interested in the current and future portions.

PAST TREATMENTS:

September, 2006
Diagnosis: Neuroblastoma Stage IV
Tumors in her sphenoid/ethmoid sinus cavity, spine, ribs, pelvis, femur, left and right tibie, left adrenal gland (primary tumor), and bone marrow

9/30/06
High Dose Chemo - Round 1
Vincristine, Cytoxan, Doxorubicin

10/01/06

Seizure. Diagnosed SIADH on 10/03/06

10/24/06
High Dose Chemo - Round 2
Vincristine, Cytoxan, Doxorubicin

11/04/06
Admitted to hospital with 3 tiny blisters.

11/09/06

Diagnosis: CHICKENPOX

12/11/06
High Dose Chemo - Round 3
Etoposide, Cisplatin

1/09/07
High Dose Chemo - Round 4
Vincristine, Cytoxan, Doxorubicin

2/17/07
High Dose Chemo - Round 5
Etoposide, Cisplatin

3/01/07
MOVE TO NY
EXTENSIVE TESTING: active NB found in femur, left tibia, right tibia, scull, bone marrow

SURGERY CANCELLED DUE TO DISAPPREARANCE OF PRIMARY TUMOR

3/14
High Dose Chemo - Round 6
Topotecan, Vincristine, Cytoxan

3/21/07
Radiation to the head
10 of 14 rounds completed

3/28/07
BROVIAC INFECTION
SEPSIS/ INTERNAL BLEEDING
ONE MONTH IN THE HOSPITAL (18 Days in the ICU)

5/07
ONE WEEK VACATION IN FLORIDA

CURRENT TREATMENT:

5/14/07
Low Dose Chemo - five day treatment
Irenotecan (through port), Temodar (oral)

Next Week:
Radiation to both legs

FUTURE TREATMENT:

(Not necessarily in the following order.)

• More Low Dose Chemo (uncertain how many rounds)
• Surgery
• 1 Round High Dose Chemo (it is important to have high dose chemo just prior to starting the 3F8 treatment)
• 3F8 Monoclonal Antibody (Multiple rounds)
• Abdominal Radiation

So as you can see, there is still much more treatment to follow... Ellie has just completed her second day of the low dose chemo. We are told that it shouldn't lower her blood counts terribly and that the biggest concern is diarrhea. We are also told that everyone's different and have heard of one boy who's counts dropped just as low as they do during high dose chemo and we've also heard of one boy who ended up with such terrible diarrhea that he was on IV nutrition for weeks. So there are all extremes and all possibilities. We are hoping that Ellie tolerates this round well. This is a new experience for us, as for the first time ever, Ellie takes one of the drugs orally. The other one takes one hour to go through her line. This happens for five days - Monday through Friday. By next week Ellie should begin radation to her legs.

Well... that's the scoop. I'm sure it's a lot of information to take in. Thank you all for your prayers and for your patience with me when I'm slow in getting the latest out to you! We love you all.

Quick Update

Just wanted to get a quick note out to let you know that Ellie will be going in tomorrow morning for surgery to get a medi-port placed near her collarbone. This will replace the Broviac line that was removed over a month ago. She will go under general anesthesia for the placement, and there will be a good deal of soreness afterwards, but all in all it should be fairly straightforward and minor as surgeries go.

Tomorrow we will hopefully find out a plan for Ellie's future treatments. There is a possibility that she will start a round of low dose chemo tomorrow, but we don't know for sure yet. I'll let you know when we know more.

I hope that you all had a wonderful Mother's Day. All my love to my own mom and my mother-in-law, Pat! Also my sincere admiration to my sister and sisters-in-law: Jenn, Ginger, and Janeene - wonderful mothers to my nieces and nephew. I love you all.

We had a fun day today - we had brunch out, then went to the aquarium on Coney Island, then Ellie got to walk on the beach with John (while I guarded the stroller), then we rode some carnival rides. We spent tons of time on the subway. All in all it was a great adventure! Ethan called to wish me a happy Mother's Day, but John answered first and so he was also wished a "Happy Mother's Day!" Ethan was very excited and had fun telling us all about a new toy and all of the fun he's having. He sounded so happy - which was the best present I could have received. Once we arrived home, Ellie went out with John and brought me back a beautiful bouquet of carnations.

I'll try to get some pictures out tomorrow. I also have some pictures from Saturday. Some ladies from The Leukemia and Lymphoma Society put on a wonderful "Mother's/Caregiver's Day Celebration" for all of the women in the RMD House on Friday night. It was a very special evening of pampering for the mom's and fun activities for the kids. Ellie met a very sweet young lady named Shelby who is training for the New York City Marathon. Shelby asked if she could run in Ellie's honor. On Saturday we went over to Central Park to watch them train, and John & Ellie rode on the scooter along side the runners. Even though Ellie doesn't have Leukemia or Lymphoma, Shelby said that it was nice for the runners to meet her and be reminded of the children who have cancer. They were such sweet people to give of their time to help people that they don't even know. Shelby has been so kind to Ellie and has made her feel special and important. So... needless to say, I have a bunch of pictures to post. I know a lot of people were busy over the weekend, so I'll let you all catch up on all that I did post over the past couple of days. I'll post the weekend's pictures later.

Lots of love to you all!

Trip to New York

We had a long, but very fun day getting from Florida to New York with Angel Flight. They were wonderful - we had great pilots who were so thoughtful and generous with their time and airplanes. The whole thing was a great adventure. For most of the day we faced a pretty stiff head-wind, so the trip was even longer than it could have been, but we certainly didn't mind! John was in his element. On one flight, just before landing, there was a good deal of turbulance. I was quite startled once when the plane lurched, so I quickly looked over at Ellie to see if it had upset her, and there was a smile on her face that reached from one ear to the other! I couldn't see John's face in that moment, but I kind of think his expression mirrored hers. Of course.

Florida to South Carolina
Airplane: Piper Aztec
Pilot: Ken
Co-Pilot: Bob





South Carolina to Virginia
Airplane: Cessna 182
Pilot: David







Virginia to New Jersey
Airplane: Cirrus
Pilot: Steve

Florida Pictures

Bubbie and Gingie got Ellie some new outfits - this one was one of the favorites!



Ethan on the swing at church. My friend Tricia is asking him what kind of superpowers he wishes he could have...



I guess we were just having too much fun, because we really didn't take many pictures while we were home. I was hoping to have more to show you...

Today Was Good

Well, another long day has come to a close. We again arrived at the Day Hospital first thing in the morning and Ellie was hooked up to fluids. We then went to Radiology for her 2 hour MIBG scan. John was with her during the scan while I stayed in the waiting room and talked with another family of a very small girl with Neuroblastoma. We then took Ellie back upstairs to the Day Hospital for her bone marrow biopsies.

The hardest part of our day was facing the procedure and recovery rooms for Ellie's bone marrows - they were the same ones a month ago where she crashed. It was almost surreal waiting on the exact same bench today for the procedure to be over. John was still wishing that he could be inside with her... He finally sat next to me and laid his head on my shoulder. I tried to convince him that she was asleep and his presence would not effect her one way or the other - and would most certainly be painful for him to watch, but the almost forlorn tone of his voice broke my heart when he said "she has to go through it, so why shouldn't I? I need to experience this with her." Yet another reason why I love him so very much. And then we walked into the recovery room where Ellie was waking up. The same bed was in the same place where I sang in her ear a month ago while she fought to live... but this time was different. Everything felt normal and safe this time, so the memories were pushed into the background and we focused on Ellie as she came out of the anesthesia. Oddly enough she woke up asking to have a kitten. She promised to feed it and take care of it if we would do litter box duty. Heaven help us all! We managed to deflect the issue - we can't even handle fish right now.

We found out yesterday that Nicole (the little girl I wrote about weeks ago) died a week ago Monday. We were told that her passing was peaceful, but our hearts still break for her family, particularly her parents, Kim and Joe. The mother I was talking with in the waiting room this morning and I both shared the same sentiment, and it's a difficult one to put into words for someone who has not experienced having a child with cancer... There is almost a small feeling of envy when we hear of another child's passing. It comes from the knowledge that their torture is finally over. I know this may sound harsh, but we constantly deal with the struggle in our emotions between desperately wanting our child to live and knowing that if she does, that this cancer will absolutely be hanging over her head for the rest of her life - even if she lives to be 100 - or that her life will be painful and difficult until she dies. The living with this fear for months, and for most people, years on end, becomes so wearing. And not only the fear, but the intense struggle for life - both in trying to beat the cancer but also to make it through the treatments alive.

Today has been a little bit long for me as I heard more stories of other children than I usually do in one day. We have been here long enough to get to know some other families, and we daily bump into someone we've already met and get an update on their child. Today we experienced this several times over and also met another three families. On top of that, I heard stories of at least 4 other children. Each and every story is different... one boy struggled for 9 years to find treatment that would work, only to finally find one and then die from an infection. Another young boy died after the less serious of his two tumors took over completely. Another young man just found out that he has relapsed after 13 years of being cancer free. Those three were all Neuroblastoma. There are some good stories, but recently there have been more bad than good. We did meet one little boy today who has finally cleared after 10 rounds of chemo and 2 rounds of the 3F8 monoclonal antibody. And so the stories go. The other difficult ones to hear are those who have come from other countries and have been living here at the RMD House for YEARS - without ever going home (those that we have met are from Australia, England and South Africa, and there is a new family from Bulgaria). Today was just one of those days filled with heavy information. Now everywhere I look there are not just faces of anxious parents and little bald children, but those faces have names and personalities. When I look up in waiting rooms, I make eye contact with someone who, if I haven't met directly, I have seen numerous times before or have even shared hospital rooms with. It is a very odd mix of comforting and emotionally draining. It is wonderful to look into the eyes of another parent and know without words that they understand, but it is also hard to take someone else's pain into my heart when I'm already overwhelmed with my own. Just the common ground of having children with cancer makes another family's pain very much our own - automatically.

All of the above thoughts and feelings naturally lead me back to the same place every time, even though working through them brings on a certain amount of melancholy (for lack of a better word). That place is two fold: the first is a strong feeling of thankfulness because in this place you will always find that no matter how bad you think things are, someone always has it worse. And then I end up feeling almost guilty for being so thankful - I would never wish someone else to have it worse. But through others' stories I am able to see in such vivid detail the many ways that God has provided for us and has met our every need. The second is where God inevitably brings my heart back to - not living in fear, and taking one day at a time. When I hear the stories and my stomach begins to clench, I remember afresh that I have experienced loss in my life and I am truly not afraid of death - not even Ellie's. I have already lived through the horrible pain of loss and discovered that God truly is enough - He's more than enough. My stomach begins to unclench and I look across the room at Ellie's sweet smile and hear her funny giggle and think "today is a good day". Once again, it comes back to that. Where are we at today? And if it's a bad day, it doesn't mean that tomorrow will be. Even the horrors of the ICU eventually ended and today Ellie smiles. It really is this simple: yesterday is past, tomorrow isn't here yet, and today is doable. And God is enough, more than that - He is good.

Just this evening John looked over at me in the small room where we now live and said "I'm so glad I have you. We could have no home and as long as we have each other we would be happy. I feel so blessed just to be HERE." And you know what - he's right. We love each other. We have one very much alive and happy little girl. We have an energetic little boy who's being well taken care of. We have amazing friends and family... we have all of you. Today is a VERY good day.

Back In NY

Hi everyone! We are back at the Ronald McDonald House again. Monday was a full (but fun) day of travel... details and pictures to come... and Tuesday was a full day at the hospital. We are still trying to settle back in so it's been very busy.

We arrived at the hospital first thing in the morning so that Ellie could get an IV, since she no longer has a central line. So far Ellie has had CT scans (she had to drink some contrast before the scans) and later received the radioactive injection for the next day's MIBG scan. In the afternoon Ellie was given her bi-monthly medication to keep her from getting a specific type of pneumonia. Unfortunately, this time Ellie reacted to the medication and was nauseous and itchy. After a dose of benedryl, she fell asleep until the antibiotic was finished. 11 hours after leaving the house, we returned. Long day...

It is now very early Wednesday morning. After all too few hours of sleep we will go back to the hospital for more tests. The MIBG scan is first, followed by bone marrow biopsies - four of them - two in the back pelvic bones and two in the front. Hopefully we will be home not too much past lunch time for some rest. Thankfully Ellie usually recovers quite quickly from the bone marrows. She will be the most sore tomorrow, and then it gets much better each following day. We are hoping that Thursday and Friday as well as the weekend will be not terribly busy. We shall see...

I need to get to bed, but just wanted to get out a quick update. I'll provide more details and pictures later. Thanks again for all of the love and prayers. We need them so much!

Checking In...

Thank you for the sweet comments about the video. I'm so glad that it meant so much to you all. It never ceases to amaze me that so many people care for our family. I'm humbled and so deeply moved to see that the goings on of one very little family would even make a dent in this very big world, but your love and concern have certainly defied all of my reasoning...

We have had an extremely busy, but happy week. We have spent time with family and friends and generally run around like crazy people trying to squeeze maximum fun into minimal time. Not an easy feat, but we've done our best. We may need to go back to New York to rest. Ooops. (John has also done some work while here, but I've pretty much just been having the time of my life!) Ellie has been spending time with some of her friends - she's missed them a lot. And Ethan's been enjoying all of the snuggles we can lavish upon him.

Tomorrow we will get to go to church for the first time in I don't know how many months. We are so looking forward to being there to worship and seeing all of the people that we've been missing.

We take off for New York on Monday morning. I'll probably not be able to update until we arrive back at the Ronald McDonald House. We've been so busy that I've not even been taking pictures, but I'll try to get some before we leave to share with you later. Just wanted to get a quick note out to let you all know that I love you and will be back to more consistent updates in the near future!

Joyful Reunion