Happy Birthday

I have a very tired, bone-weary husband, no pun intended. Today he received 6.7 million of his own stem-cells. They will make their way into his marrow and begin differentiating into new marrow cells, producing red, white, plasma, and other normal cells. There is an overlap between the death of his marrow and the life cycle of previously formed blood cells, and the time when his new marrow comes to life. Again, days 4-about-14 can be very rough. He has, as usual, escaped the worst of it thus far. Knock on wood. We hope and pray that he will continue to escape the worst, as he is so bone weary, and does now have some "chemo-brain," a condition following chemo where it is difficult to concentrate, etc. But it's a fairly mild case. He now has to follow all of the neutrapenic guidelines, so he cannot be in public, eat uncooked foods or foods not prepared at home, wash, wash, wash our hands, etc. He is pretty quiet right now, as his energy is very low.

The staff at Huntsman all wished him a Happy Birthday, as this is the day he gets a new lease on life. Literally. They also gave him a certificate and a new blanket made by a local scout troop. They made 100 for the cancer center, and I think they all go to transplant patients.

Josh is playing some basketball, Alexis is doing lots of homework, and Kyle is having so much more fun outside now that there are kids around to play with all the time. They are adjusting well. I think I am also. Dani is in London today, has seen Phantom of the Opera, As You Like It, Big Ben, will be going to St. Paul's Cathedral and Buckingham Palace tomorrow, and gets to speak English all day long. We are living vicariously through her. Have I mentioned that? I think I have. :)

Congrats to Bishop Ferland. Hope he adjusts well also! Take care.

Marleigh

Day -4

Today is the day. I am watching the Melphalan drip into Blaine's IV. This is the bone marrow killer, and after this there is no turning back. If he were only to receive the chemo, and for some reason did NOT receive his stem-cells, as the nurse says, he'd be "pushin' daisies." No one has ever done the chemo and not the stem-cells. That's the good news. On Monday, day -1, Blaine will receive another dose of Melphalan, and on Tuesday, day 0, he will be infused with his own stem cells. Then we wait. Days 5-9 are said to be the toughest with symptoms that can range from nausea, vomiting, diarrhea and severe mouth sores, to drops in blood pressure and abnormal heart rates (on the bright side, there are those who experience very little of these). His blood counts will drop down to zero at this point. Everyone experiences this. He will be receiving blood products, obviously, and shots to stimulate white cell production. These are all knowns, and they have protocol to handle each situation. During the period from about day 5 through day 14 or later, he will be extremely susceptible to infection, and we will stay within 10 minutes of Huntsman Cancer Hospital until engraftment. We know when engraftment has occurred because his counts begin to rise again, and reach a level where he is still vulnerable, but not to such an extreme. At that point, Blaine and I will return to Heber City, where we are currently staying.

Blaine's Dad has agreed to stay with the kids in Heber while Blaine and I are in Salt Lake. From today on, Blaine requires a 24-7 caregiver. That's mostly me, and family will take part, I am sure. He will not be able to be around crowds, will have to limit contact with people, and cannot be around anyone with a cough, cold, or any other contagion. The kids and I are getting flu shots on Monday, perhaps this afternoon if there is time. In December, the whole process will be repeated, and after the 2nd transplant, he will have maintenance therapy for at least a year.

All of this is why we are here, and though intense, we are relieved to get it underway. We had a very frank discussion with the doctor, and this is absolutely what he needs. It is literally a matter of life and death that he receive this treatment, so we are grateful that it is here. These guys have done this many times. Dr. Tricot has treated over 5,000 MM patients over 20 years. It is all he does, and he is the best in his field. We continue to be grateful for DHMC/Norris Cotton Cancer Center and the good people there, and extremely grateful for Huntsman and the specialists here. Dr. Tricot has seen life extended 10 years and more, and has a confidence we have not seen in prior oncologists. We have confidence, and Blaine is again, very strong. We wait upon the Lord, and know this is the answer to our prayers, and to those of many others who suffer from Multiple Myeloma.

To Liz, God Bless you! Thank you so much for the MM walk, and team "Savage Strength." Please tell us more.

To everyone, we don't mean to ignore you! We're just a little busy - crazy busy - totally occupied - fill in the phrase that fits best - you get it! We love you, and will keep this updated. Feel free to email or call, seriously. Don't think you're intruding. If it's a bad time, we won't answer, but we love hearing your voice messages or reading your words. It lifts us up. If we can answer, we will be very happy to do so. And please, someone update us about Brian.

Thanks to all. Hope everyone is well.

Marleigh

Many Changes

I have wanted to update for a while, but things have been happening so fast, and we have been overwhelmed.

We arrived safely in Heber City, UT, in no small part thanks to Brad, Thanks Brad! and his wonderful friends near Chicago where we were put up for the night, and treated like family. Thank you, Charlie and Dawn.

We are staying in a guest house, very nice, cozy. We are safe and well. Josh's cousin of the same age, arranged a date for him for homecoming. He had a good time Saturday.

The kids will start school tomorrow, Friday was spent getting the paperwork done, at least for the high schoolers. We will take care of Kyle tomorrow. They are nervous, but I think they like what they see. They miss home, but are seeing good things here as well.

Dani was finally able to access Skype, so we were able to see her and talk to her this afternoon. She looked tired, and happy. It was great to see her face, and see her excitement about everything she is experiencing. She is just fine.

Blaine's stem-cell collection was excellent. He got 30 million in 3 days. That is fantastic - enough for both transplants now, and some to bank for the future. Everyone was quite pleased. We see Dr. Tricot on Wed, and he could start transplant chemo as early as Friday. Yes, MORE chemo. But, they are not wasting any time, and we agree with the urgency. His LDH numbers were once again up on Saturday. We will update.

There is so much to say. We feel carried on pillows of love and security provided by family, friends, and ward members who rose up in a mighty way to help us do what was needed to get us out west in such a hurry. I can't even speak about it yet, it is such an emotionally touching subject. AND.... we have been very warmly welcomed here by family and the ward, and wonderful friends who have given us use of their guest house for the time being.

We will update soon. We love you, and thank you. I can't imagine a better send off has occurred for pretty much anyone, ever. And, the warm welcome here has eased our strain.

We can be reached by email and cell phone. Hope all is well wherever you are.

Marleigh

What a difference a week makes...

As I write this blog, I'm lying in a bed at the Huntsman Cancer Institute (HCI) hooked up to the Stem Cell collection machine. Today is the first day we've been able to collect, my white blood cell and platelet counts have been too low. So today is our lucky day; my WBC has rebounded to (almost) normal levels and my platelet count is good. The goal over the next 2 or 3 days is to collect 20 million stem cells (sounds like a lot). The stem cells they collect will be used for both transplants. The first transplant is scheduled for the first week in October, and the second probably around the first of December.

This past week has been a whirlwind; not sure the best way to describe it, other than to say our lives have changed dramatically over the course of a week. Marleigh has done a good job of describing the situation on the previous posts. So I thought I would update everyone with what has been happening on this side.

As you know I spent almost a week in the hospital at DHMC, returning home on Labor day. On Wednesday (Me and Marleigh's 20th anniversary) I was on a plane headed to Utah. I was greeted at the airport, not only by my father and sister, but also Frank and Elaine Anderson (good friends who reside in UT but also have a home in VT), Richard and Kathy Hall (who are like my second parents), and my cousin (and friend)Tara and her son Jordan. It was quite a reception, and some say that I almost cried (others say there was no doubt about it-I blubbered like a baby) though I would most likely deny it. I headed straight to the HCI from the airport, where they were expecting me. After a long day of traveling, I then had a Bone Marrow Biopsy and an MRI (my two favorite things... see previous posts). Needless to say, it was a long day. I've returned every day since then for my lab work and to meet with the Doctors. We have been waiting for my numbers to rebound so that the stem cell collection could begin, and today is the day. Again the objective is to move as quickly to transplant as possible, so this is the first step towards that. This collection will continue tomorrow and Friday. Then I get a bit of a break.
On Monday I had a 'Central Line' (not sure what the correct medical terminology would be) put into my neck. This allows them to hook up the collection machine. This line has two ports sticking right out of my neck (I'm set for Halloween-I look a little bit like Frankenstein). The collection machine draws blood out of one of the lines, separates the stem cells, then puts the blood back in through the other line.

So that's the situation for me at the moment. I owe you another post to let you know of the wonderful people who have stepped up to help us on this side of the country. I also need express my gratitude for the good folks in New Hampshire/Vermont who have been so good to me and my family. Again, I will do that with a separate post.

But for now, know that I am in good hands. The folks here at Huntsman have been great and I feel very confident in the direction that we're going. I believe that all the prayers and fasting have led us here.

Blaine

Getting Ready to Go

Dani is in Paris! And so far sounds great. She says she is hungry to learn more. I say go get 'em! Blaine is in good hands at Huntsman, they are moving him immediately to Bone Marrow Transplant (stem-cell variety). They will be collecting stem-cells starting Monday, and he will begin transplant at the end of September. Whoa! When this one's over, they will turn right around and do it again. Back to back transplants. Sounds rough, but everyone feels very positive about this treatment plan. Everyone, including his Dartmouth docs! We still love 'em. He sounds much better, and I'm not sure how much is the treatment plan, and how much is being back in the Rockies, with his family. I know he misses us, but he is also glad to be home.

We have had quite a day! We had an army here helping us pack and move furniture to storage today, and the house is almost empty. Our toothbrushes are even in a box! Thank you everyone. So much.

Heber City Utah is on the Eastern side of the Wasatch Range in a high mountain valley. It gets hot in the summer, and plenty cold in the winter. We are close to lots of great hunting,fishing, and family, who have wrapped their collective arms around Blaine as he came home.

Our plan is to drive out Wednesday. We will be taking two vehicles and an extra driver. Thanks Brad! We'll stop for the night this time. I hated Monster, anyway. When we arrive, we have a place to stay, and will enroll the kids in school in Heber immediately. Josh is changing schools his senior year, and being every inch a man about it. I am very proud of him. Alexis is leaving behind an amazing circle of friends in school and church, (they are having a party for her as we speak), and it is hard to do. But she loves her Dad best. Kyle is both excited and sad, as he's always loved our visits west, but he's realized that also means leaving here, which is really all he's ever known. But alas, he also loves Dad best. We all do. And we are soooooooooooo happy for the hope this new treatment plan has brought us. He is in the Lords hands, and He has made things happen very quickly.
As much as we are leaving behind good things, and there are many, we are also headed towards good things. The saying goes, you need to bloom where you are planted. Or transplanted. Our whole family has experienced that, and is in the process of uprooting again. But we will be rooted in good soil when we get there.

Now if we can just sell the house! It's been a wonderful home for us, and will be for someone else. Lots of sports for kids, right near the high school, good community, cozy feel.... anyone know a family looking for 5 bedrooms and a huge back yard? This is the place!

On Tuesday from 6:00 - 8:00, we will be at our very empty house, hoping to say goodbye to anyone who would like to stop. We would love to see you.

We have LOVED living here. It has been so very good for our family. We have all grown while here, and enjoyed the place, but mostly, the people. We will miss it. Hope to see some of you Tuesday from 6-8.

Thanks for being so good to our family. And God Bless.

Love,
Marleigh

What the heck is up NOW?!

Dani said to us last night, "Have you ever thought about how crazy our lives are?" We said, yep. I am cutting and pasting from an email I sent out to family last night here, so if it is repetitive, please forgive me. There is also more info now, so you might want to read it anyway. :)

When Blaine went in the hospital for chemo, he had elevated LDH numbers, which indicates inflammation in the body. As he received the infusion, LDH numbers kept coming down, until Sunday, when they were brought into the normal range. Chemo stopped Sunday evening. By Monday morning's labs, LDH levels had already significantly risen.

The docs have been great, doing everything they know to help Blaine, and consulting with Dana Farber. However, they themselves have been surprised at every turn by the aggressive nature of Blaine's disease. The last time I spoke with them, they suggested we take him out west to be with family, and did mention Huntsman Cancer Institute, since we had discussed it previously. Knowing that Huntsman has docs that come from a program that is VERY aggressive with MM, and that starts out with the very approach that was Blaine's third line of defense, I emailed them yesterday since it was a holiday, and called today. I spoke with Dr. Tricot who has 20 years experience with MM and has treated over 5,000 MM patients. He asked me to get Blaine there NOW. He has seen this response before and told me how he would handle him based on the info I gave him.

So bottom line, Blaine is on board a plane for Salt Lake City, UT. He arrives at 11:50 AM, Mountain Time, and will drive straight to the Huntsman Cancer Institute where they are expecting him. They will begin his workup when he gets there. Dr. Tricot can piggy-back on the just completed chemo and neulasta for stem-cell collection, so he is on schedule for harvesting stem cells in two weeks. If they can harvest enough cells, then he will be moving right on to transplant within the month. If he cannot produce enough cells, we look at matches immediately in his family for a donor. He will have a tandem (back to back) transplant. This will keep us in Utah for 6 months at the very minimum.

Starting tomorrow, our house is for sale. 5 bedrooms, 2 baths, hardwood floors throughout, 2 acres of land, a mature garden spot, updated septic, new drainage system, enclosed porch, and a 2 car garage. Any takers?

That's the news. Kyle said yesterday, "You know all those fasting and praying and stuff? Well, this is the light." We think he is correct, and this is the answer we've been seeking.

We are sorry Blaine didn't get to see so many of you, but this is what he needs. We send our love and prayers to Brian and others who are hurting, and will continue to update this blog with things as they unfold. We can still be reached by phone or email. Wish us well, and we you.

Love,
Marleigh and Blaine.

From room 101

Blaine is going home later tonight, after he finishes his second unit of blood. He is finishing up the first unit as we speak. He has again, done incredibly well with chemo. He has had some nausea, but no vomitting, and has been able to eat enough. He gained 20 lbs of water, which is now coming off. As far as in-hospital side effects, he has virtually sailed through. What a suprise, eh? He has even been out walking a bit. He will come home, and they will draw blood twice a week to watch his blood counts untill he comes back to do it all again in about three weeks. In the meantime, we'll drive him crazy, watching him like a hawk.

Yesterday, our kind friends, the Martins, brought dinner to the kids. They packed it up and drove here to the hospital. We ended our fast together, with a prayer, then ate. I felt SO good. I know the kids did as well, because they all made it, even Kyle! We are so VERY appreciative of all those who fasted and prayed with us in whatever capacity they were able. Perhaps that is why he is doing so well.

Saturday was a very emotional day for me. We ran around like crazy putting all the finishing touches together for what was, in my mind, a very special goodbye to a loved family member. What a wonderful spirit was felt during the service and during the wonderful meal provided so kindly and well by our wonderful Relief Society. Thank you so much, sisters! And everyone else who pitched in to help our family with the service that day. :) It was a blessing to be surrounded by family, some whom I had not seen, and neither had anyone else! for years. I think everyone had a chance to express their love for Rainee, Brian and family, and it seemed healing. I hope anyone who didn't and needs to will be able to talk to someone close to them. Everyone's concern was evident for Brian, Erin, Patrick and Sam, but also for Blaine and us Savages. I deeply felt and appreciate it, very, very much.

After we dispersed from the chapel, and I was driving to the hospital, I realized that Brian needed our fasting as much as Blaine, and perhaps more so, since he was the only remaining parent. So, I fasted for both Blaine and Brian. I know miracles can happen, and I see one in Brian's imroved condition, at a time when it was CRITICAL for him to be functional, upon the death of his wife, and his children's mother. They needed him to be better, and he is. Though not out of the woods by any means, he is improved. Our Loving God knew what was coming, and in His tender mercy, helped Brian. Miracles can and do come, some through medical, explainable channels, others through unexplainable ones. Either way, I am grateful.

More than anything, I have needed to express my feelings of appreciation for the service on Saturday and the love expressed for Rainee. I was so glad to see all of my siblings, Mom and both Aunt Scott and Aunt Rusty, Uncle Terry and Kathy, and members of Rainees family. I think they felt the love there for her and that it was a fitting goodbye. I hope Brian, Erin, Patrick, Sam and Rainee's family feel that way also. I felt good leaving, and it seems that others did as well.

I also needed to express my deep, deep gratitude for the fasts and prayers. They came from many of different faiths, and from those who I don't know to be particularly religious necessaruly, but who did this wonderful thing in our behalf. I know they will be blessed for it, and we already are. Thank you so very, very much. We will continue to remember Brian and his family in our daily prayers, and know you will as well. And whoever else is in need.

So, to finish up this long, perhaps repetitive submission, I wish to just say one last thing.

Rainee, I love you. Until I see you again, God be with you, God be with you. We love you.

Marleigh

Update from Rm 101

They say humor is great medicine, so thanks for the jokes.

I'm sitting here in room 101 at DHMC; floating between reading, watching football, and dozing off. If I were at home enjoying these activities, it might be the perfect Saturday (but I'm sure Marleigh would tell me to get up and do something).

I have three IV lines hooked up to me, pumping all kinds of medicine into me; several Chemo medications, several anti-nauseua medications, etc. They've warned me that I'll be very sick, but mostly now I'm tired and pretty hazy. Hard to focus on too much. Maybe that's par for the course for me anyway. But I feel good.

I appreciate all the words of encouragement and support, that's the best medicine of all. I'll update this as often as I can.

Blaine

Chemo from Heck..... Day 2

The word for today is exhausted. He was up last night with steroids, and his body is processing amazing amounts of toxic stuff, so you can imagine that he's a little wiped out.

I have a request... they say that laughter is the best medicine, right? So, swamp the comments with the best (or worst) jokes you got, funny stories, lame pictures, you get the idea. :) Keep them coming whenever you think about them and have time to write them. He reads all of the comments on this blog regularly, and I will make SURE he reads the laughs. Have fun! Oh yeah, keep 'em clean!

Thanks.
Marleigh

Today's Adventures

Blaine and I arrived at DHMC at 8:00 this morning. He had an MRI followed by a pet-scan. It was about 12:30 PM by the time we made it to the Hematology/Oncology unit where he will be for the next while. He hadn't eaten since the night before, and was starved. It took until after 2:00 to get the ok for him to eat. They were right to be safe, but he was glad for some food! They took labs, waited for the results, ordered meds, prepared three med pumps (one for his medi-port, the others for two other IV sites they started). They filled him full of anti-emetics (anti nausea), and finally at about 7:00 PM everything was in place and they began delivering the chemo meds through all three sites. The list is frightening, and we're not going to even try to list all possible side effects, save to say they can be scary. He will have 24 hour a day chemo for the next four or five days. He will not be home before Monday we understand, not Sunday, assuming there are no complications. With all the drugs they're hitting him with, my read of the nurses is almost to expect a complication or two. But, he has surprised us all before.

They say he will probably not really start to feel it until tomorrow afternoon. They don't say much beyond that. His spirits aren't as good as they have been, the results yesterday were a blow to him. Even so, his faith is in God. With Him, all things are possible, and as Juanita pointed out, He is the Master Physician.

Blaine is in a double occupancy room since the hospital is full. Apparently, we aren't the only ones with trials! A good friend of ours was just one door over. Since he is not in a private room, I could not spend the night, and am typing from home. I was soooo not happy to leave him there, but he was more concerned with the kids than himself. When I called home to tell them I was on my way, Kyle answered. I told him, and he went silent. "Why?" "Do you want me to stay with Dad?" I asked. "Yeah!" he responded. He was the one I was MOST concerned about, but he wasn't happy that I would not be with his Dad. We will count our blessings.

We love our docs! Can we say that? They truly seem to care about him, and Nandi Reddy, the fellow, says he has spent more time on Blaine this week than on his family. He wanted us to know that and to know that he was very much fighting this one with us. He was a little emotional when telling us this, and we sooooo appreciate it. Dr. Bengston is also very concerned, and doesn't want to miss anything. We are grateful for their dedication, and honest care and concern. They are good, good guys.

We are also truly so very grateful for the love and prayers of so many, especially those who will be fasting with us, and those who have been with us all the while. Check out the 'Sweet Times' link to the side. Thanks Lisa, so much. And everyone else. Also a thank-you to those who fed our kids and picked up Kyle from school when our teenagers were unavailable to do so. So many kindnesses, it would be impossible to name them all, so I'll quit trying for fear I'll miss some.

I'll try to update this nightly, but no promises. Hope all is well with you and yours.

Marleigh

Results

Well, what do you do when you get bucked off a horse? You get right back on. What if the horse you got on at first wasn't so bad, but got real mad that you were still riding, got mean and bucked you off twice? Then you REALLY have to show him who's boss.

The analogy is to Blaine's condition. News from the biopsy wasn't good. He now has Refractory (unresponsive) Multiple Myeloma. Totally unresponsive? No. Responsive enough? No. The docs are still gathering data, but things are not progressing as hoped. So, what's next? Tomorrow morning, Blaine will go for another MRI and Pet Scan, following which he will be admitted into the hospital for VERY intensive chemo, which will be delivered IV all the time. He will continue with Cytoxin and Dexamethazone, plus a few more high-powered chemo drugs. He will be in at least until Sunday, barring any complications. When he comes home, he will be very out of it. He will be sick as a dog, this time for sure, and have lots of blood count issues. They will monitor his blood very carefully so that he can receive transfusions as needed. He will also have to miss Rainee's funeral. That was his biggest immediate concern with the docs. "Can we schedule it so I can be available Saturday?" No chance. "Can I leave for a while Saturday?" Nope. He wasn't happy. He really wanted to be there. His heart will be. Everything is still on, for those of you who might be concerned. No worries.

As a family, we are going to fast for Blaine this weekend. That means that after dinner on Saturday evening, none of us will eat or drink at all until dinner on Sunday evening. 24 hours, or two meals. During this time, we will also be devoting our prayers to him and his well-being. Fasting is not a droll thing, but can be a joyful one. It is a sacrifice that we are very willing to make in his behalf, and invite any to join us who can or would care to. If you are physically unable, the prayers are still so very appreciated. We will lift up our hearts in prayer to the Almighty in his behalf. Join us if you can.