Fear, Pain, and Hope...

Fear, Pain, and Hope...

I'm so sorry I have not been posting. I cannot even tell you how busy things have been these days. The family has all returned to Florida, but we are still pushing hard to finish our home and move in. On top of that, John has been pursuing a couple of leads on jobs, and it looks like he may be going to work as early as next week! If all works out, he may be in a job where he can work three 12 hour shifts and have four days at home every week. That would work out so well for our family, as it is our deepest desire for John to have as much time at home with Ellie as possible!

Over the past couple of weeks, Ellie began having some pain. First in her back and then in her leg. We have been on something of a roller-coaster ride emotionally. The pain has been in areas where we know there is cancer, and at first we were preparing ourselves that this pain marked the beginning of the end for her. But then we remembered that just before the pain began, Ellie had done something while playing that was an unusual movement for her. And then after a number of days, the pain subsided. We have been able to give her relief from the pain through the use of a heating pad and Homeopathic remedies. The other night, just one dose of a remedy allowed her to sleep completely through the night without pain. We do have an appointment with a doctor to set up a plan should we come to the stage of needing drugs for pain control. In the middle of all of this - the pain, and family leaving, etc. - Loretta began researching and following up leads on various supplements and diets that we have heard about. We have already been using Homeopathy and certain dietary supplements to treat the cancer and help with Ellie's overall energy levels and such, but we have renewed our efforts to seek out the best plan for Ellie's care. (We are currently working with a Homeopath who is an MD in Internal Medicine, a PHD Nutritionist, as well as a Pediatric Internal Medicine doctor who has shared our experience on a personal level in his own family. We are also able to keep in contact with our Oncologist in NY, as needed. As you can see, we have a wonderful team that we know and trust!) We are now in the process of adding some things and "tweaking" Ellie's diet. When she was in the middle of chemo and radiation, it was just too hard for Ellie to take anything new or different by mouth - basic food was hard enough. We are finally far enough away from that to be able to try some things. And so, after all of the research, we are encouraged that there are still things that we can try to treat the cancer - and all will go hand in hand with the Homeopathic treatment. Already, after implementing just one new food, Ellie's energy is better and the pain is gone!

The emotional ups and downs of the past few weeks have been draining, but we are beginning to sense a leveling out in recent days. It is so hard to know what to think and feel sometimes. We know the reality - that Ellie very well may lose her life to this disease, but we have chosen to live in hope. Some may think that it is a totally unfounded hope, but it gives us the energy that we need to fight. Ellie is certainly not done fighting! She is motivated to do the things that it takes to help herself feel better. And most importantly, whatever the outcome, we refuse to allow this time to turn into a "living wake" for Ellie. We will not mourn for her until she is gone. And she is still very much alive... and happy.

We have been saddened lately to hear about 5 deaths of NB kids in the past couple of months. We knew two of them. Two months ago, Lillie Boyte, an adorable little three year old girl that we met in NY lost her fight with Neuroblastoma. She died 10 months after her diagnosis. On Monday, Grace Oughton died after her two year fight with NB (she relapsed once). She was also three years old. Her dad, Alec, was one of the driving forces behind "The Loneliest Road Campaign". If you go to the website: www.loneliestroad.org and click on "about us" you can see a picture of Alec and Grace - next to the pink angel wings. Alec is one of the fathers on the video when the website comes up. Our hearts break for these families. Please pray for them.

I don't mean to leave you on a sad note. We just put one foot in front of the other each and every day. It's all we know to do. Ellie's well-being is our top priority, along with Ethan's emotional wellfare. This is a walk that we can only do with God's help, and your love and prayers have been such a part of the process. We feel the hand of God on us continually, even in the down times. His presence is always there.

Once again I find myself without adequate words to thank you all. Many of you, and your children, have done such special things for us that I have yet to thank you for... I cannot tell you how often I see things that remind me of your thoughtfulness and generosity, and one day I will finally be able to tell you personally... Please know, until then, that I appreciate you from the bottom of my heart.

Checking in...

Things are still as crazy as they were on my last update... The progress on the house has been great! There is paint on the walls, which thrills me to no end. Flooring is next. I will try to get pictures soon for you.

Ellie had a belated birthday party last night. She had a blast! Ginger has been working and planning the party to make it special, and when I asked Ellie if it was all that she hoped it would be, she gave me a sweet little smile and said "even more." We were even able to have a couple of friends over to celebrate with her, and Bailey and Codey put the "special" quotient right over the top. I'll get the pictures posted soon, but I wanted to at least get a quick update out now.

So far Ellie has been feeling pretty well. She has some tired times, but that's about the worst of it. She mostly has good energy and continues to hum and sing through the days. We are so looking forward to having a home again... just having a spot to be, and maybe even be able to stop the spinning... at long last. Imagine that!

Fun Times...

Just a couple of pictures of Ellie and Maddie playing. Ethan was there for some of it, but didn't make it in any pictures. Ellie had a little fort set up (thanks to Pat) and then she cut out some paper wings so that they could be fairies. They had a blast! (If you look at the bottom picture very closely you can see a tiny pony tail sticking out of the side of Ellie's head - she had to match Maddie in every possible way!)

Alive, well, and slightly insane

Hi all. Sorry I've not been posting. It's been just a little crazy... We have 14 people living in one house (well, some of us are sleeping in campers) and the guys have been going a hundred miles an hour to get our home finished. And then there's the fact that I had to have a tooth pulled a couple days ago. (It was a back molar - something that needed work right when Ellie was diagnosed a year ago, and I didn't take care of. Once I finally got around to it, it needed a root canal. I don't feel that those are healthy, so I had it pulled. Not fun.) On top of all that, we are having some adjustments being together again as a family after being apart for so long. One major adjustment - I'm not used to having two kids any more. It's still wonderful to be together, but I had forgotten how divided my attention gets between two children. And poor little Ethan hardly knows which end is up after the past difficult year. It will just take time.

I just wanted you all to know that we are alive and, if not well, then on our way to that. Thank you all for your prayers. I will try to get word out as often as possible, but if you don't hear anything in spurts, it's probably due to the business and chaos. In other words, no news is relatively good news. I may have a few gray hairs when it's all over, but I will have a home... so it balances out, right?

One Happy Mama

Thought you might like to see my morning's activities... it was a VERY productive morning!






Ellie is having so much fun with her cousin, Maddie (Russ and Ginger's adorable three year old)

Home at Last!

Hello everyone! I just wanted to get a quick note out to you that we have safely arrived in Montana. John and Ethan were there at the airport to meet us, as I had hoped. There were hugs and some tears... I did see cameras and video cameras in the background, so I know someone has a record of it all. I will try to post some of it. But for now we have hit the ground running, so I have to keep this short. I will get on ASAP with more, but just wanted to let you know that we are here... and happy! Love you lots.

Thank You!

Thank you all for your wonderful comments of encouragement! As always, your love and support continue to keep us going. And as has been the way from the beginning of Ellie's cancer, I have drawn indescribable comfort from your tears on our behalf.

Ellie and I left NY for Montana this evening. We had one stop in Minneapolis... which has turned into an all night deal. Our plane was delayed so long that we missed our connecting flight. Ellie was a bit nervous about it all, but we decided to make this a grand adventure. There were a few bumps in the road - long lines, little food, and the directionally challenged adult hauling a tired, sore child (not to mention an insanely large laptop that weighs approximately the same as a mac truck!) around from pillar to post... but it all payed off. We hare lounging in a gorgeous hotel room that almost makes me wish that we were staying more than a night! This whole place is beautifully decorated and family friendly. There is even a set of bunk beds inset into a wall. Ellie has already unpacked her small bag onto the top bunk. We managed to get a pizza before the kitchen closed in the restaurant tonight. So all is well.

There were a couple of unexpected blessings on this trip. We met some very kind people - a sweet young couple with an adorable dog. Ellie loved petting him and talking as we waited for the plane in NY. And there was another wonderful couple who talked with us as we boarded the airplane. If all of you guys are reading this... thank you for your kindness and for making our trip special! And then in the midst of the long lines of angry people who had missed flights, there was a little exchange that I overheard that made me smile. It was already late at night, and we had finally made it onto the shuttle to get to the hotel, and a young couple rushed onto the bus. The dad was holding a sleeping toddler and the mom had a front carrier on with a newborn baby - and they had all of the gear to go along with two small kids. They sat down on the bus and the man looked over at his wife, smiled and said "God is so good to us!" It just made me smile. That was probably the one and only positive comment I had heard in all of the craziness, and I loved it.

John and family were planning to get to Montana on Sunday, but they decided to step it up a day and arrive tomorrow. So now they will probably be there on time to pick us up from the airport. We are sooooo excited! So for tonight, we rest comfortably and look forward to seeing family tomorrow afternoon. It feels like forever since I have held my little Ethan, and once I finally get my arms around John, I don't think I'll let go ever again. This is it! We will finally be - in the words of Ellie when she was a toddler, all "togeddery"!

My next post will be from Montana, and I will be very happy indeed! Love you all.

Test Results...

Ellie was a trooper for her bone marrow test this morning. She was nervous going in to it, and awoke feeling sore and dis-oriented. But Ellie was up and working with the hospital's teacher within 20 minutes or so.


Before we left the hospital, I had a talk with Ellie's oncologist. He showed me the results of yesterday's MIBG scan. Unfortunately, the test revealed that there are a number of "hot spots" showing Neuroblastoma in Ellie's bones (left shoulder, left hip, legs, one of her shins, and probably spine, ribs and pelvis). The CT scan showed no evidence of active tumors in any of the soft tissue - the old tumor in her head, or her abdomen. It appears that all of the active cancer is coming from the bone marrow. So even though we do not yet have the results from the bone marrow biopsies and aspirates, or the urine test (which shows the levels of NB in her body), we can expect that they will show positive.


I must admit that, while I wasn't really surprised, I took the news much harder than I expected. Somehow, just seeing the evidence right before my eyes was a pretty heavy blow. I did ask what treatment they would offer Ellie, and he said that there is heavy chemo (which John and I don't feel Ellie can handle), light chemo (which has some side effects that would be hard for her and may or may not make a dent in the cancer), and radiation to the specific sites. While he did not say it in so many words, my impression was that these treatments would be primarily to buy Ellie some time. I couldn't talk much in the moment, and told the doctor that John and I would discuss things and get back to him. The hardest part came when I had to go back to Mom and Ellie in the waiting room. I briefly told Mom, but started to get choked up, so I had to get away before Ellie saw me. Mom was wonderful - she held together and managed to take Ellie to get lunch and give me time to call John and Loretta. Talking on the phone completely undid me. Trying to deal with this over the phone with John was unbearable. He was at a gas station somewhere near Wyoming, and we each took turns crying. There was something so awful about not having our arms around each other in that moment.


This is what it all boils down to: there is no cure for Neuroblastoma. It is an aggressive, difficult cancer - with a very low long-term success rate. Sometimes the conventional treatments work, but many times they don't. Going forward with chemo (from this point) and having Ellie survive more than a few pain-filled years would take a miracle. Surviving this cancer with treatment by Homeopathy would take a miracle as well. (There is one possibility in the Homeopathic arena: sometimes in cancer treatment, it is possible for new tumors to show up while the patient is steadily seeming to get better. In a case such as that, the patient gets a little worse before getting better. It is by no means a guarantee, but it does give us some reason for hope.) This afternoon, through our tears, both John and I talked about how we want Ellie to experience as much joy and comfort as possible in living no matter how short her life may be. And if that life is short, then we want her to die at home in our arms instead of in an ICU somewhere. We did not make any final decisions or grand statements... we were just talking. But we were on the same page.


So after quite a long time on the phone, I was composed enough to go back up to the room and face Ellie. Now Ellie is only nine years old, but she's a pretty complex little girl. She doesn't miss a thing. And on those rare occasions when I am able to get something past her, she manages to still feel my emotions underneath the surface, and that is the most unnerving thing of all for her. I have learned to always talk to her with complete honesty, but to take her lead with how much she can handle. Ellie always shows me when to stop, or when to proceed. It is a fine line to walk, but it has always stood me in good stead. This is how the conversation went (to the best of my memory)...



Me: Come here a minute, I want us to have a little talk.

Ellie: Is this going to be a lecture?

Me: No! Where did you hear that from?

Ellie: TV

Me: You didn't do anything. I just wanted to tell you about my talk with the doctor. Your MIBG scan showed that there are some places in your bones that have cancer in them again. (We have always been careful to tell her that there was still cancer in her bone marrow that we were trying to fight. We never told her that it was gone completely.)

Ellie began to cry and hugged me close while she sobbed.

Me: What are you thinking?

Ellie: I DON'T WANT MORE CHEMO!!!

Me: We don't want you to have to do more either. Daddy and I are still talking about what is best to do for you, and we do want to know what you want. But we don't want you to think that this is up to you to have to decide all by yourself. The doctor also said that we can do radiation on some of the places.

Ellie: (wailing) I DON'T WANT RADIATION.

Me: We don't want you to have to do that either. I'm not saying that you have to do it. I'm just telling you what we can do to try to help the cancer stop growing.

Ellie: I don't want to go away.

Me: Do you mean die?

Ellie: (crying) Yes.

Me: We don't want you to die either. You need to know that this cancer is very hard to treat. It's tricky and can be difficult to make go away. Sometimes chemo works well and it goes away. Sometimes kids have to get 14 rounds of chemo (and you only had 6!) and it finally goes away, but then sometimes it comes right back. There is no way to know. And it's possible that Homeopathy won't work either. We just don't know. But Daddy and La and I still want to do Homeopathy and good nutrition and we want to fight if you do. Do you still want to fight that way?

Ellie: Yes! I WANT TO GO HOME!!

Me: What are you thinking?

Ellie: (crying and hugging me) I'm scared

Me: Of dying?

Ellie: Yes

Me: (crying a little) The good thing about Homeopathy is that if it doesn't cure your cancer, it will help you die peacefully - not like being in the ICU with all of the tubes and wires. It can really help things to be easier and calm.

Ellie: I want to call La. Does she know?

Me: Yes - I talked to both La and Daddy on the phone this afternoon.

Ellie: Does Grandma know?

Me: Yes. I told her. La is waiting and can get on the web cam with us if you want.

Ellie: Yes!



So we got on the web cam and told Loretta about our conversation. And then we talked about how she can spend each day making the most of living. She can play and laugh and do school. Everyone should live each day like they don't have more time. People tend to either think that they have all the time in the world, or live in constant fear that something bad will happen. We just never know what tomorrow will bring, but we should live each day to it's fullest. Then Ellie began laughing and playing with La. The joy and peace that radiated off of her was palpable.


And so, while I said earlier that we have not reached a firm decision, you can see where we are headed. While Ellie is too young to make this decision for herself all by herself, this is about her. I believe that as parents, we are entrusted with our children - to make the best decisions that we possibly can for them - not born of fear or selfishness. I see such parents here every day. The paths they have chosen differ greatly, but there is not one whose courage I don't admire. They consistently demonstrate selfless love, whether it comes in the form of persisting with every conventional treatment known to man, walking away from certain treatments, keeping their whole family together, or living separated from spouses and children. I have been talking with a number of parents as well as the social worker here at the hospital. This disease is not a straight-forward kind of cancer that has a standard cure - one thing that works for most patients. Each and every person with NB seems to have something unique unto themsleves. And each family is faced with making the decisions that are best for them. There are no easy answers, and what is right for one is not always right for another. I have been thinking about that a lot today. I think that it is so easy to fall into the trap of thinking that our decisions are only "right" if they work out the way that we want. I have become more and more convinced that we often make right decisions that have unexpected outcomes. And that doesn't make them wrong. We cannot see the end from the beginning. We can only walk in humility before God, listening to His voice, and stepping out... often blindly.


I cannot promise you what our future will look like. But for now we are going home... to be together as a family... to live. And tonight John's heart is broken because he has missed the past two-and-a-half months of Ellie's life. Please pray for us. I wish that there was some way for John to be able to stay home for a time and spend some good quality time with Ellie.


The next three weeks will be busy as we prepare a place to live. Loretta lives in half of a small building on Mike and Reni's property. We had decided to temporarily move Loretta into the guest room of the big house and take her room, and then wait until spring to fill in the other half of the building - next to our room - for her. But in light of the new developments, we hope to find a way to get it all done. Should things with Ellie take a turn for the worse, we will need Loretta closer in the middle of the night. We would also like to free up the guest room for family and friends who come for visits.


Tonight I will leave you with the everlastingly wise words of my adorable daughter. She was watching a TV commercial for some cereal - Coco Puffs, I think. She rolled her eyes and drily commented "that's just death on a stick!"

Schedule

Just wanted to let you know that today is a pretty easy day. We will go to the hospital for some blood work this afternoon and then Ellie will recieve a radioactive injection (in her medi-port, so not painful) to prepare her for the MIBG scan tomorrow. So there's nothing painful or difficult to anticipate today.

The schedule tomorrow is an opthalmologist appointment in the morning, followed by the MIBG scan. The scan is not overly difficult - just a lot of lying still for a while. Thursday Ellie will have her bone marrow aspirations and biopsies. That will be the hardest day. They take samples of her bone marrow from 4 different locations in her pelvis - two from the front and two from the back. The worst part is that it is just difficult for Ellie to find a comfortable position to lie down afterwards. But she usually recovers quickly. We fly out Friday evening.

Thanks for all of the prayers for the tests!