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

Monday, November 26, 2007

Checking in...

Hi all. I just wanted to let you know that there is still nothing new to report. Things remain pretty much the same as in my last update. If anything, Ellie probably just continues to have less energy with each passing day, but it's not dramatic. The pain remains under control with the two mildest drugs that we can give. We have an arsenal of other drugs to use should the need arise, but so far homeopathy has helped keep Ellie very comfortable, mentally alert and happy. I'll try to get more interesting details soon, but I'm tired tonight. We are hanging in there as well as we can... some days are better than others... Thanks so much for your support and love!

Monday, November 19, 2007

Quick Update

Hi everyone. I just wanted to let you know that there isn't really any change to report. The medicine is doing it's job of keeping Ellie pretty comfortable. She doesn't have a lot of energy, but she is able to get through the day fairly well. We just try to keep things calm and interesting. So far she is eating and drinking well and we still have a lot of room to increase the drugs and/or change to new ones. The drugs we are using do a great job of pain relief without any sedation-type effects, so Ellie is very much herself. She is still able to get around pretty well, but limps a little because most of the pain is on her left side - leg, hip, shoulder - and we carry her up stairs. One huge blessing is that she is now sleeping well at night. I will let you know if there is a significant difference to the positive or negative. I will also try to get pictures out as soon as possible. We have been trying to get a record of everything these days.

Thank you all for your wonderful comments of encouragement! You have blessed our hearts in so many ways.

Thursday, November 15, 2007


Sometimes I get to writing things down and don't always pay close attention to how they come out, or might make someone else feel. I try to pay attention, but from time to time things slip past me. And sometimes more important than what I do say, is what I don't say. One of the hardest things about this year for me has been having to make the difficult decisions in spite of making other people feel badly. Even though I have done my best to be honest with you all, I haven't always told you everything that has happened or given all of our reasons for what we do. I am not sorry for that, because some things simply do not need to be told, but by some of my omissions, I have possibly caused confusion and misunderstanding, and I don't want to do that.

First of all, I now realize, in hind sight, that I should have offered a more lengthy explanation of why Chad came alone to Montana. I was trying to shorten it into something generic, but I ended up making light of the sacrifice that Janeene made in staying in Florida with the kids as well as not giving you the full truth. Many times we have had to make hard decisions over this past year, and one of the things that we have been very careful about is germs. We have found that young children who are developing their immune systems can be the greatest risk. As Ellie's counts drop, a virus can easily be the thing to take her out. I spent some time on the phone with Chad, and expressed our concern (because as of a couple of days ago we were entertaining that very small chance that things would get worse before they might get better) and asked if he was planning on coming immediately, that Elijah not come. They were so gracious to us. I'm sorry that I glossed over something so important for the sake of brevity.

Another excruciating decision that we have had to make, is that of telling our parents to hold off on coming during this time. I need to make it clear to you that all of our parents would be here in a heartbeat if we said the word. Our reasoning hearkens back to the days of the ICU. I discovered then how hard it was to see the ugly side of cancer and of dying. I also realized how hard it was for me to deal with my own pain and stay strong for Ellie while being impacted by the grief of our parents (because of how weak and overwhelmed I felt). Until Ellie takes her last breath, I may not fully give in to my grief. I feel it in small pieces every day, but I mostly must fight. This time, like the ICU, is such a time of working and fighting. Mom and Gary and Stan and Pat have been with us from the beginning - providing comfort in the hospital, caring for Ethan, and giving support in so many ways. So many people have come to our aid over the course of this past year, that I have begun to feel like we use people up for a living. Right now we are leaning on those with the technical know-how to get us through this final journey. Not because they are closer to Ellie than her grandparents, but because we need their help. Everyone in our lives have had a specific role over this year, and they have all fulfilled that role with such love. We have never intended for any to over-shadow another. We are forever grateful to all, but right now I would ask that you would pray specifically for Ellie's grandparents. Their hearts are broken as they are only able to wait. Please pray that God Himself would wrap them in His loving arms and comfort their aching hearts!


Thank you all for your wonderful words of comfort and encouragement! They have been like balm on our hurting hearts. To be honest, John is usually so busy that he doesn't often read the blog, but last night he read what I wrote and then every word of your comments. It has been difficult for him to go to work every day and leave Ellie behind, but I hope that your words are resounding in his mind as he works this morning and bringing him comfort. As of tomorrow, John is off work for a week and he is wanting to plan some special things to do with Ellie (along with the special impromptu moments that happen when you least expect them).

My brother, Chad, just arrived for a couple of day's visit. We have not seen him for almost three years, and his memories of seeing Ellie in person are of a five year old. We wish that Janeene and the boys could be here as well, but it was a quick trip and not one that could easily be made with a brand new baby. The kids are thrilled with their Uncle Chad, and have been trying to talk him to death! When Ellie first saw Chad, she put her arms around his neck and didn't want to let go. After staying that way for a long hug, they pulled apart and then Ellie grabbed him again and didn't want stop hugging him. She had the sweetest smile on her face.

Once again we are calling upon Melanie to come in and guide us through deep waters. She arrives from Connecticut tonight. We are coming to the point of needing Ellie's port to be accessed to help deliver fluids and medicine, and beyond the physical know-how, Melanie knows what the end looks like and can be immeasurable support in that area. We are so thankful to have her knowledge and wisdom around the clock, and we realize how blessed we have been to have Melanie walk through this with us!

The medicine that Ellie is on is helping her. When it is timed right, she spends most of the day pain free and has slept beautifully for the past two nights. We had a visit from a Hospice nurse yesterday, and she was wonderful! She was able to help us do some planning and gave us an understanding of things that we needed to know. One of my questions had to do with the confusion of seeing Ellie feel so good while knowing that she is probably seriously declining. Her answer made such sense to me and enabled me to wrap my mind around the process. She called this kind of false sense of well-being that Ellie is feeling a drug "honeymoon". She said that it can last even a month (give or take) but that there's no real way to know how close the end is. But then she went on to talk about being tuned in to Ellie's mental/emotional state as much as the physical to gain clues as to the timing of her death. She said that often a person will have such a will to live that they will hang on longer than anyone thought possible, given their physical state. But also the opposite can be true. She said that sometimes you will start hearing the person feel as though they are just too tired, and don't want to fight anymore, and they are often able to let go before their physical symptoms might determine. This explanation helped me so very much, just because I will be able to be prepared as the time gets closer. I know that as you walk this journey with us, you will feel the difficulty of waiting and wondering as we do. I hope that knowing some of this will help with that uncertainty, and I will let you know the "clues" as I find them...

Ellie is doing pretty well emotionally, but as of last night we are seeing some uncertainty and a little anxiety. She very well may be feeling those first glimmers of preparation in her heart that all is not as she had hoped. Please pray for Ellie's little heart, that God will prepare her in His perfect way and perfect timing. And please keep us all in prayer that we will have the wisdom to make this final journey as peaceful and free from fear as we possibly can for her. This is the last thing that we will be called upon to do for Ellie, and we long to do it well!

As always, your love and support mean everything to us. I don't know if you will every know how blessed we have been by your love!

Tuesday, November 13, 2007

Letting Go

My dear sweet family and friends:

I have always been honest with you, and the time has come once again for me to meet you with the truth. I truly believe that we have reached the beginning of the end. Ellie has gotten a fever, but she has no symptoms of a virus. After checking her blood yesterday, the doctor has told us that her counts are dropping. The fever and low counts mean that her bone marrow is "compressing" and losing the ability to do its job. Ellie is dying. Yes, God can still do a miracle. And yes, there is that outside chance that the fever means that the tumors are dying instead of getting worse, but if that were true the blood counts would not be lowering (I think).

I went to bed not knowing what to write to you all, but I awoke with one clear thought in my mind. I need to ask all of you the hardest thing I have ever had to ask of you: to let go. You have prayed and loved and cried with us. You have taken Ellie into your hearts and lives, and now I would ask that you join with us as we open our hands and let go.

Ellie is still alive, and so our time to mourn has not yet come, but our time to release her has. Ellie is not now, nor has she ever been - ours. God brought that tiny little bundle of joy into our lives nine years ago, and by His grace we have done our best to protect and care for her. I can honestly come before you now and say that we have not done a perfect job - we have made our fair share of mistakes along the way. But we have given it all that we have, and we have no regrets. I told you some time ago that making the "right" decision does not always mean that it has the outcome that we want. At this very moment, I have a clean conscience before God that we have done right by Ellie. We have honored her wishes while fighting for her life with all that we had. We will not look back. We have trusted God to lead us and guide us, and we believe that His guidance was true.

So how are we really? We are neither brave nor strong. Frankly, most of the time we are a mess. We are sad and overwhelmed and scared. But I have to say that as of yesterday, my heart feels such peace. That doesn't lift the sadness, but the peace is strong and steadfast. John, right now, would rather go sky-diving without a parachute. We have taken turns crying. I found him the other day working on the house and fell apart in his arms, and yesterday he called me from work crying. This morning he called from work and said that he's ok as long as he doesn't try to think about life without Ellie. Yesterday Ethan was a love. He has been happy and sweet, as long as I am close by. He takes every opportunity to snuggle with me and kiss me. And Ellie is the most amazing of all! She can feel quite a bit of pain at times, but Motrin takes most of it away. She is not wanting to eat very much, but has to get some down so the drugs aren't hard on her stomach. That has been a very tricky dance. Ellie has been unbelievably sweet. Smiling and hugging us constantly. Last night she drew the most beautiful pictures for us, and she signed and dated them. She appears to be completely unaware of what is really happening. What is in her heart of hearts, I don't know, but as always, I follow her lead and answer the questions she wants to know. For now she does not ask if she is "going away". She has actually been making plans for the future - things to do and people to see. I have thought about how wonderful it would be for Ellie to plan on having a fun day the next day, and then wake up in Heaven. I don't know if that's how it will play out. If she senses what is coming, I will certainly talk with her and cry with her, but I am trusting God for Ellie's death to be perfect... for her. I do pray that God will allow Ellie to have her wish to die in her sleep. Somehow I think that He will, but I trust Him to know best.

I will leave you to soak all of this in for now. I am sorry. Thank you for choosing to be on this journey with us. Your love and support have made all of the difference.

“The Lord giveth, and the Lord taketh. Blessed be the name of the Lord.”

Saturday, November 10, 2007

I'm an Aunt... again!

My brother and sister-in-law, Chad and Janeene Mankins, have welcomed a new baby boy into their family! Ezekiel Wayne was born on Tuesday in Orlando, Florida, and the proud parents were able to bring him home from the hospital on Thursday. Chad and Janeene are missionaries in Papua New Guinea, and have just arrived home for a short furlough to adopt their second child. God allowed for things to happen incredibly fast. They arrived in the States in October, and already have the baby in their arms! We are so happy for them.

Baby Zeke:
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Proud big brother, Elijah:
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One happy (and multi-tasking) Papa (Gary):
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My Grandma Jean holding another great-grandchild:
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I also have some sad news. On the very same day that Zeke came home from the hospital, my grandpa (my dad's dad), Chuck Mankins, passed away. He had recently had surgery on an aneurism, and had gotten pneumonia. I was so hoping that we would have the chance to see him again now that we live closer (he was in California), but things have not settled down enough with Ellie for us to have made the trip. All of our love and prayers are with the rest of the family: Grandma Irene, Uncle Steve, Aunt Sharon & Uncle Jerry & Shasta, Uncle Mike, and Grandma Lois. We miss you all so much, and all of our love is with you right now!

As far as things go on the home front...
John started work on last Monday. He will be in training for about two weeks, working Monday - Thursday, and then switch to working Friday - Sunday. He is enjoying the work so far. On his days off, John works on our house. We are still not living there, as we cannot take Ellie in until the paint fumes and such, have dissipated. And there is still a little more painting and caulking to complete. John is basically working non-stop, except to sleep. I'm sorry I don't have house pictures yet. I had wanted to get "before" pictures so that you could make sense of what was done, but I didn't (the story of my life). Now the only thing to see is walls and floors. But that might be interesting if you want to see the colors. Other than that, it's not terribly fascinating. I will for sure get pictures of it with all of our stuff in... when there's life to it. The basic structure was 36 feet long by 25 feet wide. Loretta lived in one room that measured 25' by 20' and had a small bathroom and closet that poked over into the unfinished side of the building. When John's family was here for three weeks, they finished off the unfinished 25' by 16' side. Loretta will live in that room, which now measures about 18' by 15'. Then Russ, Stan and John put up a couple of walls on our side to make a small bedroom for the kids and a kitchen/shower room. (The bathroom is literally a small room with a toilet.) We will then have a bedroom-living-dining room in the main portion of the house. Our living area for the four of us is about 520 square feet, which includes the bathroom and kitchen/shower that we share with Loretta, and the closet, kid’s room and main room. But please, no pity - we have brought some of the comforts of home with us, including our plasma screen TV, comfy sofa, extremely comfortable king sized bed, and a heated toilet seat. We received merciless teasing over the toilet seat when we lived in Florida, but I can guarantee that we will be the envy of the neighborhood here in Montana! One of the projects that is left to complete is our bed, which will be a loft structure with desk area underneath. Our TV will hang off the foot of the bed. Loretta has a table that folds up small and holds 4 chairs inside the base that we will put in that room as well. I'll definitely provide pictures when it's done. The kid’s room is so small that there is only room for beds, so John will also custom build those. We will have toy storage built in. There will be a single bed top bunk, and then the lower bunk will be a full sized bed. It takes up the room, but I think it will be worth it to have a spot where we can lie next to Ellie when she needs us in the night. Our bed will be difficult to get her on if she's having trouble with pain. And I am thrilled with the kitchen. It's a small kitchen and it has a shower in it, and the kitchen sink is the ONLY sink in the house, but it's going to be beautiful. The colors are gorgeous - very pale apple green walls, with light teal blue/green lower cabinets and white counter tops. All of the hardware is brushed nickel and there will be white shelves on the walls instead of upper cabinets. (Your dream kitchen, Tricia, only much smaller.) The bathroom, which is right off of the kitchen is painted the same teal as the cabinets. The rest of our side of the house is painted a light tan/gold (to reflect as much light during dark winter months) except for one wall in the living room/bedroom. It is a slightly darker version of the teal in the kitchen cabinets. Once the room is filled in, that gold and teal will be the main colors, but it will be accented with chocolate brown and apple green. The floors in the main part are a pergo-like laminate and look a lot like a light cherry wood, while the kitchen and bathroom are tile. (Russ, Stan, John, Mike and Reni out-did themselves with the amount of work that they completed in three weeks!) We are getting SO excited about finishing up and moving in! Home sweet home... it's been too long.

After a wonderful pain-free week, Ellie has begun having pain again. This time it's in her shoulder and spine as well as some in her legs and head. It does seem to be getting worse. I just wanted to let you know so that you can be praying for Ellie's comfort as well as wisdom for us. I promise you that we are doing EVERYTHING in our power to help Ellie stay comfortable and happy. Please rest assured that we spend all day, every day caring for Ellie's needs, and we are working hand in hand with her Pediatrician, who's only goal is to keep Ellie comfortable. We take her in for blood work on Monday, so we will have a much better idea of how things are progressing. I am sorry for the sporadic updates. I will be sure to write if things are different, so no news means that there is no great change for the better or worse. Our days and nights are so busy right now between the work of day to day living and sleep-deprivation. As always, thank you for your faithfulness to love and pray for us.