Saturday, January 31, 2009

I'm thinking about smiling! Aren't they handsome! I love my boys.

I love this pic of Henry and Elizabeth. They are so cute together and Elizabeth is such a good big sister.

Thursday, January 29, 2009

John Deere Fans!!!

Thanks Grandpa and Grandma... they both love the hat. Which one do you think it looks better on?

Henry is a little sick of being in the hospital too. Poor guy. His hand looks like it's in a cast.. it's not, just a new IV line. The nurses broke his central line, so the IV team had to repair his line and put in a new IV for a few days. The TPN or nutrition stuff they were pumping into his arm wrecked his vein so his arm started swelling and so they had to poke him a few more times for blood and then finally started using the central line again. Too much at once. I think that's why he looks so exasperated!

I know isn't it cute... Total Fashion Statement!

Cuddle Time with Mom

Snowman Pablo

Our Mexican Snowman. The only twigs we could find made him look mexican so this is our snowman Pablo. :) Joel and I had a snow ball fight that night too and I have absolutely NO aim... don't ever put me on your team. Then Elizabeth met us outside with Grandpa and we made a snowman. She was sooo excited.

Hospital Routine

Elizabeth loves to read books in the window seat at the hospital. And she loves her cartoons. She has this new routine when she comes to see Mommy and Henry. When they get close to our room, Elizabeth turns to Granny Annie and says "you in time out" and then she comes to the door and knocks. When I answer the door, Annie is released from time out. Then after giving me a hug, she wants to watch cartoons. If she needs something and the nurse happens to be in the room she tells them to get her whatever it is she needs. UGH... and today I thought she was calling our male nurse Spongebob because she didn't know his name. So I tried to tell her to ask what his name was and she said no.. spongebob. He then showed me his spongebob figurine that's attached to his stethoscope... Sooo funny. Anyways she's getting the hang of it, and I swear she's gonna be an actress when she's older because she puts on quite a show when she has to leave. We hug and I tell her why she has to leave and she says okay and stops crying and starts walking to the door where Annie is waiting. The moment she gets to the door she turns around crying again and wants mommy. She breaks my heart every time. But some of it is a bit dramatized. However, by the time she reaches the outer doors of the SCCA unit, she's happy and running and laughing again.

I know it's been rough on her, but she's so funny about it sometimes. And she is so quick to learn new things and understand how things are suppose to go, how we interact with other people and all that. Such fun to watch. Henry loves to have his big sister here, as long as she's not trying to crowd mommy's lap. They are such fun! Can't wait to see them grown up together playing and all that. I hope they are great friends!

Tuesday, January 27, 2009

Just like my Daddy

Joel used to rest his head on his shoulder when he got really tired. I used to tease him about having a heavy head. Although Joel couldn't quite pull it off with out getting razzed... Henry pulls it off quite well. :) Just wants to be like Daddy.

Isn't he darling!

Happy Again

A smile!! And his appetite is back and he's flirting with the Nurses, so you know he's doing better. :) He ate a whole slice of bread and some milk, and even a little bit of cookie. Moments like these make my heart happy!

Yesterday they had a blue tube by his head to help provide oxygen, but today the tube wasn't quite enough. So they put the nose tube on him. He doesn't really care for it, but I think he realizes that it's helping him because he tends to just leave it alone.
During the tent treatment they make sure he has two pacifires, so that he always has one in his mouth and one in his hand so he doesn't get distressed if he loses one. :) Funny doctors.

Today Henry is doing a little worse, but not worse than the doctors expected. His chest xray shows a lot of gunk and it will just take time to clean out. The missionaries came today to give Henry a blessing and they gave me one as well. How blessed we are to have the power of the priesthood on the earth! Truely it is the power of God, young men from different parts of the world, who have no idea who we are or much less what we have gone through, can lay their hands on our head and bless us with the things we most need. Answers I have been searching for, for over six months came through these two missionaries. The Lord knows us and our needs every minute of every day! I have such a sweet peace, and understanding of my responsibility as a mother, to care for my child. And an understanding that there is a purpose for everything we endure, and we don't always recognize it right away, but when we look back we see why and how it prepared us for something later in life.

We sent Elizabeth to Mandy's house to play for the day. I think she was getting a bit bored with the hospital and she really loves seeing Mandy and Finley. It has been a nice break for the day. I can actually relax and not worry about what she's breaking or getting into, although I'm hoping Mandy isn't going crazy. :)

Joel just called and said he was in Fred Meyers buying plus size pantyhose! hahahahhahahhaha What a sight. He claims it's because the mountain in Alaska is spewing ash so he wants to put it over the airfilter in the Durango. The Doctors laughed pretty hard. Thanks for the entertainment Joel. Love you!

Mom asked the Doctors today how concerned she should be... :) On a scale you know how anxious should we be. They said we shouldn't be too worried. If he got to the point where he was having a harder time breathing, they would put him into ICU and probably use other methods of providing his body with oxygen. So for now, although he sounds so pathetic when he coughs and seems to be in pain, he's hangin in there. He sat so still and quiet for the missionaries when they gave him a blessing and after it was over he opened his eyes and looked at the missionaries and then went back to sleep. As much crud as he's going through he still entertains us and is as cute as ever!

Love to all our friends and family, thank you for all the prayers.

Monday, January 26, 2009

Henry Allen Miner 12/1/08 8 months old

Elizabeth Anne Miner 5/5/07 8 months old.

This is the tent Henry has to be in during his treatment for RSV. The first go round was a bit tramatic! He spiked a fever and we couldn't give him the tylenol for another half hour and then the nurse pulled off the wrong end of the hose so Medicine was blowing into the room. It was crazy! Hopefully after his methadone tonight he'll be more able to take the medicine. He's suppose to get his meds through a face mask that blows the meds into his mouth, but babies this age don't necessarily appreciate the mask. :) So he has a tent and an oxygen box. A bit suffocating to say the least!!!! Poor Henry. He's such a trooper.

Back "In House"

That's the term they use when you are admitted into the hospital again. "IN HOUSE" because he has the RSV virus. Basically a virus that wouldn't phase an adult but in babies especially, so much mucus and gunk builds up in the lungs and sinus' that it makes it difficult to breath. Their airways are so small as it is and then fill them with crud and they end up needing oxygen or a ventilator.. etc. Not fun. The only thing they have to treat it with is some weird tent thing, called Ribavirin, that pumps medicine into the air that he breaths and it's suppose to target the RSV. Three times a day for two hours, for five days. So we'll be "in house" for at least five days. In December he started his synergist which is suppose to keep him from getting RSV, since it didn't he probably shouldn't get it as severe. We're hoping. I was pretty frustrated when they told me that we would have to be admitted but thinking about it, we're better off here because they can give him the help he needs breathing and I would have been a nervous wreck and he would have gotten really sick. So blessings come in strange ways. :) At least strange to us.
Henry got a fever last night at 5pm. Dinner starts at 5pm and Elizabeth had just woken up from a nap. So I say to my mom, lets all go together because he already had his labs done earlier that day and all they needed to do was draw blood cultures. Four and half hours later.... and they finally tell us we're being admitted and mom and Elizabeth go back to the 'Donald House' for some food. What a night!
It's going to be a hard five days. But hopfully he'll get through this with out many more difficulties. Elizabeth is watching Cartoons and getting into everything she's not suppose to. Henry is crying he's calling for momma. Better get going. I just thought I would let you all know what's new today.
Sending lots of Love to all!


Saturday, January 24, 2009

Daddy, Elizabeth and Marley the Dog on Halloween. We were at the Ronald McDonald House and it was soo much fun. Joel scared all the little kids but had tons of fun.

Every day Therapy dogs come in to visit the kids here at the house and this one is my favorite! Isn't he cute.

Friday, January 23, 2009

We're trying to fatten Henry up so he doesn't have to get an NG tube in his nose again. So last night we fed him as many brownies as he would eat! He was a happy guy. Elizabeth and Henry are both sick now. Poor kids. No fun. Mom and I have made a resolution to exersize more and get to bed early so we can get up early. I have already gained weight! UGH! It's another beautiful day in Seattle, but COLD.

My mom bought some magnets for the doors in our room, some numbers, for Elizabeth to play with. However, when we got back to the room we realized the doors aren't magnetic nothing was except the leg of the table. One solid stand for the table, so when Elizabeth wants to play with her numbers she has to climb under the table! Horrible! But I'll have a pic soon. Gotta get back to cleaning and exersizing!

Much Love,


P.S. This pic is old, he doesn't have the NG tube in his nose anymore, but I love this pic of them togther. She's such a good big sister. :)

Thursday, January 22, 2009

Henry's Status

Yesterday was our visit with the Doctor, and a chemo day. We had talked to the Doctors before about Henry's back, four of his vertabrae are fractured or splintering either from the LCH or the steroids or both. They didn't think it would be a problem then, but after talking to them about how much pain Henry seems to be in they prescribed Methadone. A long lasting pain reliever, which we give to him at night and they said should help him sleep through the night. We didn't sleep entirely through the night last night, but he did sleep longer than usual. He is still pretty constipated, too much adult food that's hard for his body to digest. So we are working on blending his food up for him so he can have what we eat and still be able to digest it.
We have one week to try and fatten him up or they will put the feeding tube back in his nose. I'm frantically trying to get him some weight gain. He's had ice cream, pudding, chocolate, anything that will give him some weight.
They are also increasing his mp6 (the at home chemo that he gets MWF) so that his body might be able to go three weeks between his Vinblastine chemo. Every time he gets the Vinblastine he has to do a steroid blast as well, for five days, and since the steroids are already destroying his bones they really think it would be best for him to go three weeks. However we are still waiting to see if he's really responding to this treatment plan. His rash is a bit better in the diaper area but spreading in small amounts onto the trunk of his body again. Besides which they think that all the fevers could just be signs of the LCH flaring, or attacking the body. We are still holding out hope that this regiment of chemo works, otherwise we go to harsher chemo and he's already being adversly affected by this regiment. Only time will tell.
The good news in all of this is that hopefully if he has been in chronic pain the Methadone will help him. We are being scheduled to see the Orthopedic doctors to get their opinion on the vertabrae fractures and if he feels they will heal on their own, we will be able to start physical therapy with Henry. He's lost so much strength through this all, he's stopped rolling over or standing much or reaching for toys. So we'll get to work on that and hopefully get him moving around a little more. It's hard to believe he's almost one. Time really has stopped here and I forget how old he's getting and treat him like he's still 4 or 5 months old. Crazy!
It's a bit overwhelming I know and sometimes I just get a bit stressed out, but the Doctors are doing all they can and hopefully this will all work out for him. The Lord is truely blessing us and watching over us. We have so much to be greatful for and hope for. Thank you for all the prayers. We love you all and miss home.

Much Love

This is my favorite picture of Henry. He was really hungry and Elizabeth didn't want her Mac & Cheese, so I started feeding it to Henry. Well I had to get up and do something and when I got back this is how I found Henry. A few minutes later he had a lap full of elbow noodles but he was happy. Advice for the future, cheese isn't great for aiding digestion. OOPS Sorry Henry. :)

Headed out shopping in the truck, Elizabeth was totally into it and Henry of course was sleeping. Typical guy response to shopping. :)

Auntie Robyn and Elizabeth watching Cartoons together.

Girls Weekend

Sorry I have been so slow to post. I guess I am always waiting for something fun or different to post. Last weekend my sister, Robyn, came to visit. We had so much fun, even though we didn't have a lot of plans. We did go shopping at Goodwill on Monday. They were having a huge sale, red tags only 99 cents. It was such a beautiful day outside as well. The sun was shinning and it was about 50 degrees. All of Seattle was out enjoying it, since it was a holiday weekend. It's amazing how many people come out when the sunshines. Since there is so little of it in the winter they take full advantage of the sunny days when they come.

Even though Robyn claims not to like shopping she did more than me or my mom. It was great fun and Elizabeth was so excited to go shopping. I did purchase my first purple UW shirt, so I could fit in around here. :) I'm hoping to go to a basketball game someday. We ended up spending a few hours at Goodwill and Elizabeth was ready to be done so we headed back to the RonDon House for dinner. After that Robyn and I went to Half Price Books! I love that store. I bought five books for me and two sets of flashcards for Elizabeth and it was under 25 dollars. What a day of bargains.

However, most of our weekend together was spent in the room playing games. Elizabeth developed a bad cough and runny nose, that she's still trying to get over. So we became quarantined to our room, for the health of all the other kids in the house. Which wasn't a bad thing, we actually had tons of fun just hanging out. Elizabeth had so much fun with Robyn, I'm sure she wishes that Robyn could be here more often, and so do we.

Hope everyone had a great Holiday weekend. Much Love.

Lisa, Elizabeth and Henry

Thursday, January 15, 2009

Henry likes Chocolate

Henry went to town on a slice of chocolate. Not sure if it is good for him but he certainly thinks so. He is doing good, keeps having fevers but every day for the last 3 days he has been in to the Hospital and none of his blood cultures showed any infection or bacteria. We think he is just teething. He has one bottom tooth all the way through and we can feel another almost ready to break through. He loves to chew on shaved ice (makes the gums feel better). I am flying home today for a few days to check on the house, do some taxes, and for work related obligations. I have a flight back to Seattle on Sunday. If everything goes good and Henry is over this every day fever thing I might decide to head beck to work next week and fly down every other weekend or so. Robyn (Lisa's sister) is flying in this weekend for a couple days to visit. Both Lisa and Laurie are so excited you would think they won the lottery or something. Elizabeth just tore apart a book, I think she has learned if she acts out she gets more attention. We will haft to work on that. Henry does seem to get a lot of attention, so maybe we need to give her more of the right kind of attention. Headed for the Airport in a few minutes.

Tuesday, January 13, 2009


Lauire (Lisa's Mom) thought I should post some pictures of Elizabeth so she did not feel left out so here is a picture of Elizabeth as well. Elizabeth is doing great, she loves to watch Dora on TV and keeps us busy following her around cleaning up messes. The good thing is she is potty trained, the next step is stopping her from using the men's restrooms.

She loves her hats, and the last picture is her first time sailing!

Good News

Henry was just released from the hospital. Its weird how fast things can go bad and then how quickly things can get better. He is feeling better and back with us now at the Ronald McDonald House. He is quietly sleeping on the bed and I just heard some tooting noises. Before Henry, I had never heard of constipation putting someone into critical condition in the hospital. We are not really sure what exactly happened, he was in a great deal of pain and was unable to maintain a good blood pressure, the doctors and us agree it seems there was more going on than constipation but he is better now and that's all that matters. The good thing is- he feels better with every diaper we change, so sometimes the good must come with the bad.

Monday, January 12, 2009

After spending an exhausting night in the ER, 12 hours to be exact, we finally got into a room on the SCCA floor. This afternoon they did an ultrasound of his intestines to find out if he had a bacteria in his intestines or just really bad constipation. Turns out the ER Docs were wrong and he is very very backed up and that's what is causing all the pain. So Henry should be released tomorrow night at the latest. They will spend the day flushing him out hopefully. Poor little guy. In an attempt to calm Henry down the Doctors gave him Morphine and Adovane didn't phase him at all. Once they gave him Tylenol he perked up and acted like a new baby boy. They were in awe... and all the nurses Loved him. They get googly eyes for him and he's such a flirt. :)

Elizabeth spent the day watching cartoons and eating snacks with Granny Annie. She is such a sweet girl. She's growing like a weed and learning to understand more of what we ask her and how to better express her feelings. She misses home, her reading room loft and the latter.
While all we miss home, but I am so much more comfortable and at ease here. The hospital is close enough we don't worry about the ER room runs and the Doctors are so great, we really trust them a lot and that really helps my peace of mind.

In Church on Sunday we sang Nearer my God to Thee and there's a line in the last verse I think about the things the Lord sends us. And no matter how tough things have gotten here I have truely been blessed to recognize the incredible blessings that fill our lives. Family and friends, and much much more. Thank you for all your prayers and love. We truely feel it and recognize the power of prayer and the priesthood. How greatful I am every day to know and understand the plan of happiness and the joy the gospel brings into our lives.

We miss all you guys at home! Enjoy that freezing weather for me and I'll enjoy the Seattle winter here! :)

It is now about 1230 Am on Monday Morning. Lisa and Laurie just took Henry to the Emergency room. This morning he was doing fine, we went to church and he seemed Happy. This afternoon he seemed constipated and started crying. We gave him some constipation medication as well as his prescription Oxycodone but by about 10PM he was still in a great deal of pain. Laurie, Lisa, and I would take turns holding him while he cried. It's really emotionally taxing to hold a baby so innocent and sweet who is in so much pain, not being able to do a thing about it. I gave Henry a blessing and Finally after repeated attempts to call the on call Doctor Lisa and Laurie took Henry over to the ER to see what they might be able to do to ease the pain.

Henry's Story

When Henry was about 2 months old we noticed he had a sort of Diaper Rash that would not go away. We tried different creams, consulted the Doctors who referred us to a Dermatologist. No one could figure the rash out and eventually a Biopsy of a small portion of the rash was taken and sent to a Lab in California. A short time later the results came back diagnosing Henry with a rare Disease called Langerhans Cell Hystiocytosis, LGH for Short. Feel free to Google it if you want to learn more. Although it technically is not Cancer, nor Leukemia, The easiest way to explain it is that it is an auto amune disease similar to Cancer or Leukemia and treated similarly with Chemotherapy and Stereoids. Like I said if that does not satisfy your curiosity feel free to look up LCH on your own.

Shortly after Diagnosis Henry became ill and had to be Hospitalized in Alaska. Things got worse and about 5 days later he had to be airlifted to Seattle Children's Hospital. The Doctors in Seattle specialized in rare Cancers and provided Henry much better treatment and after a few weeks he was stable and eventually was released to out-patient treatment. He had to stay in Seattle and even though we had appointments and treatments about every other day he was able to stay with us at the Ronald McDonald House.

He was put on Chemotherapy treatment and things seemed to get better. Just before Thanksgiving we were released to go home to Alaska to continue with at least a year of home based Chemo Treatment with Doctors in Alaska taking over and overseeing. Unfortunately for whatever reasons Henry's health did not cooperate and Christmas Eve; Lisa, Henry, and Elizabeth flew back to Seattle. Bone marrow tests revealed the LCH had progressed and was in his bone marrow. Joel flew down on New Years Eve and joined everyone in Seattle. Since then Henry has seemed to progress well and is doing better than when he arrived. Every day has its challenges and seems to be different. Some times Henry is as happy as can be and other times he is in a great deal of pain.

That was very cut and dry but it gives the basic update where we are at now. I will try and post as things change and add pictures as I can.

Some of the pictures attached were taken just before Thanksgiving.

We were sent a card from a Family Friend which read:

"Life is not about waiting for the storms to pass, It's about learning to dance in the rain"

I wanted to say Thank You. This simple saying has helped me keep perspective on numerous occasions.

Sunday, January 11, 2009

Our Family

After numerous calls and questions we decided it would be a good idea to create a "Blog" for our family, to keep others up to date on certain aspects of our lives and to serve as a history/journal of our family. What we post here is for friends and family. For more details or more specific info you all know how to contact us :) Joel and Lisa

Neither of us has had any experience with "Blogs" so we will see how it goes.
This is one of our favorite pictures of Henry, taken a few months ago while he still had a feeding tube in.