Miracles

Yesterday two ladies from church brought me with them to the temple. I was going to cancel because Henry was having a CT scan, but I remembered Elder Scott's talk about not letting the small inconveniences stop us from going to the temple. While we were driving to the temple, we ran over something, and the computer on the car was telling us that the tire was losing pressure. Not much though. When we drove up to the doors of the temple, the tire went completely flat! It was a miracle we made it with out a bad accident of any kind. Our friend that drove told us to go ahead with out her, and she would get the tire fixed. Well the man at the front desk told her to go ahead through the session, he found someone that would take care of it for her. It was so wonderful! For the first time in a long time I was able to let go of what is bottled up inside. It was a feeling of peace, being at comfort and feeling protected enough that it was okay to not be strong for a minute. I don't know if that makes sense but it was wonderful. So much so that I didn't want to leave! I knew that Henry was going to be done with his CT scan and I wanted to get back to him, but I didn't want to leave. I guess that's what people mean when they say the weight of the world was lifted off their shoulders. What a great feeling!

Today is our anniversary, four years! I think it's gone by so fast because a lot of the time we've been apart from each other! haha And with out even thinking about it, yesterday was the anniversary of the first time I went through the temple. It's been a wonderful few days!

And today we get to go back to the RonDon!!!! We might only be back there for a week or so but that's alright!! Time out of here is wonderful. Can't wait. Still waiting to hear from the Doctors, but looks like we'll be out of here by tonight. Henry is doing phenominally! He looks great, the rash is pretty much gone, and his tummy is normal size almost. He actually put his toe in his mouth.. not something he's been able to do for a long time! Gross I know but I was so excited. The Lord has truely opened the windows of heaven upon us! He has such love for us, my heart breaks to think that people don't know of his love, or don't recognize it in their lives. I just wish everyone could feel and know of his love for them!!!

Getting Better Each Day

Smiling and playing and laughing all day!

Giggling with mommy...the little stickers on his face hold the NG tube in place, much better than that other clear tape stuff we used.

Giving Kisses, I love baby Henry kisses. Today he ate more than usual, played more than he has lately, and wanted to be held most of the day. So exciting. What a great blessing! We may actually get to spend a few days back and the RonDon before our next round of Chemo. We shall see. :)

H-Train

The HemOnc Team Doctors gave Henry a new nick name, the H-train! Not sure why they chose that but everyone seemed to like it. And they were all in great moods because Henry was doing so well! He hasn't had a fever in over 24 hrs and he didn't need platelets today because they were at 11. 10 is when they transfuse, but he's been getting them every day. And his albumin levels were an all time high for Henry at 2.1!!! Not significant for anyone but Henry. He's been in great need of his albumin so he doesn't swell up when he gets fluids. He weighs 21lbs and is looking really really good. So everyone was in high spirits today and just thought I would let everyone know that your prayers are being heard and answered! Thanks sooo much. He's getting back to being Henry. It was a GREAT day!

Another Update

(Henry trying to eat his big toe. Back when he could get his toe to his mouth.. these days the belly gets in the way! Pic taken 8/20/08)

Hello All!

Just thought I would let you all know that Henry is doing well. His counts (red/white blood cells basic immune system stuff) are still at 0. It should take anywhere from 14 to 28 days for us to see his counts rebounding. Right now he's getting platelets every day and blood every other day. So when his bone marrow starts to rebuild again we'll see him getting platelets every other day and blood every two days or four days.. so small steps but he's getting there. He's so strong and looking better and happier every day. The Doctors are pleased with how he's looking.

We're down to only two lines attatched to him any more; NG tube feeds, and the IV line that they run his antibiotics through. When he takes a bath he's unhooked for a while from everything and I love it. We dance around the room and play and look out our big window and enjoy the freedom.

I bought a pilates mat finally, the blankets just weren't cutting it anymore. And bought another pilates DVD but it isn't any good. I'm pretty bumbed out... but at least I still have one. The women from the ward have volunteered to come and sit with Henry so that I can get out and run a few times a week. They have been offering forever I just finally gave in and said yes. I'm learning to accept help and service from others, they need the blessings as much as I do. So I went to the mall down the street and enjoyed the warm warm sun. I even sat outside today reading and got sun burned. Oops.

It's much easier to be happy when the sun is out, but harder to be in the hospital when it's so warm out side.

We ran into a family that had been at the Ronald McDonald house with us last year, they got to go home in October, the daughter going through treatment was all done. We were so excited but so so sad to see them go. Well they were here at the hospital for their three month check up and happened to pass our room. I was sooo excited to see them. Makes me soo happy to see families that have made it through the mess and heart ache of it all and are doing so well. It gives me hope that one day I'll be home again!

Besides my husband is finishing my house and I'm missing out on it!!! I'm not gonna recognize my own house when I get home! :) Thanks Honey. Much Love.

Trying to Sleep Mom!

This is a shot of Henry's large belly!!! You can actually see his back too where it kind of bows out because of all the fractures. However, he is doing really well. Today we had a bath and then played and he sat up on his own for a while with out much discomfort.

Like I was saying before all Henry needs is his paci and blanket and oh yeah the oxygen. Not needing it as much as before which is great. But still needs it. He got his blanket dirty this morning so I had to hurry and wash it. He was so excited when I brought it back. Both blankets got dirty so he was with out for a while. oops. Such a trooper.

Treatment Update

Well Henry finished his 6 day Chemo round or cytarabine and cladrobine. It was a hard week, lots of pain and nausea and lots and lots of fevers. We're hoping that in the next few days the fevers will subside and his nausea will go away. As of today he's regularly on adovane, Zofran, and a benedryl reglan mix, on top of his methadone. So when he has a fever in the evening he gets all this medicine and then is pretty much out of it for a few hours. Haven't quite figured out what's causing the fevers; with LCH he has fevers frequently, just the LCH flaring, the chemo he was on also causes fevers, and he has coughing fits where he's puking up lots of mucus that also sets off fevers. I'm getting a bit anxious and frustrated, having to watch Henry go through this stuff. I guess because I can't figure it out, I'm praying the Doc's will have an answer soon, or that will a few more days the fevers will subside as all the chemo is released from his body.

This morning he got really excited because I went back to the RonDon and made a smoothie...soo good mom!... and he loves them. So we shared some smoothie and I brought over his favorite toys. We tried playing for a bit but he was too tired.. medicine time.

So now we just wait, keep giving him platelets, blood and IVIG, until his body can produce those things on it's own. I guess it's hard this time because the Chemo Henry went through before didn't effect him as bad. New experience.

He really loves his Nurses and they all love Henry, we are finally out of Isolation!!!!! YEAH! So we can walk the halls, which really excites Henry and Mommy! We walked yesterday until our oxygen tank was empty.. oops. Chatted with all the wonderful nurses and got some exercise.

Well that's all for now, I'll be sure to update his progress. Much love to our friends and family!! Thank you all for your prayers.

My Henry

Henry's favorite things. His blanket and his pacifire. If he can have these two things he's usually happpy.

GO LONG! He's got quite a good arm. I'm more in favore of baseball, less physical contact. :)

Memories...

This was taken in November right before we went back to AK. He's so happy and strong!

Elizabeth hangin with Uncle B and Bionce the cat, playing video games. She loves her Uncle B and Aunty M. :)

Just a couple days old, with Granny Annie. Who would have thought they would get to spend so much time together!

She was so excited to hold Henry, mommy's baby. :)

General Conference

Twice a year our church as General Conference where the leaders of our Church speak to us about things they feel are important for us to hear. The one talk I missed because of Henry's CT scan was by Elder Eyring, and after reading it today I'm sure it was something I needed to hear. Here are some quotes from him that really touched me.

The knowledge of the atonement "will comfort us when we must wait in distress for the Saviors promised relief that he knows, from experience, how to heal and help us.

The Book of Mormon gives us the certain assurance of His power to comfort. And faith in that power will give us patience as we pray and work and wait for help.

He could have known how to succor us simply by revelation, but He chose to learn by His own personal experience.

Even when you feel the truth of that capacity and kindness of the Lord to deliver you in your trials, it may still test your courage and strength to endure."

"The Lord always suits the relief to the person in need to best strengthen and purify him or her. Often it will come in the insperation to do what might seem especially hard for the person who needs help himself."

And finally the Lord says to those who don't think they can endure much more..."peace be unto they soul, thine adversity and thine afflictions shall be but a moment."

I am so grateful this Easter weekend for the atonement of our Savior. For the pain he endured so that he might know how to comfort and strengthen me during times of trial and heart ache. And I am also grateful that I have wonderful friends and family that uplift me and strengthen me during my times of trial. The Lord has truely blessed me with great peace and I know that through this trial I am learning and growing, and hopefully becoming what the Lord wants me to be. I hope that you have all enjoyed the Easter weekend, but more than that I hope you remember why we celebrate Easter, and the wonderful gift the Savior gave us as he atoned for our sins, and willingly gave his life so that we might return to our Father in Heaven.

Thanks again for your support and your prayers they have truely blesses our family, and especially little Henry with strength to fight through this treatment. Love you all.

Wonderful Husband!!

So as I sit in the hospital room today I have a cooler full of ice, and a bag of food that will last me for at least two months. I also will have clean clothes because he did all the laundry. He's be awesome I haven't had to do anything but sit here with Henry.
He's having a hard time adjusting to the new chemo, and I thought for a while he got some sort of virus because he was having fevers every two hours or so. While we exhausted every possible virus and bacteria that could be causing it the Doctor finally said to me, well the cytarabine that he's on causes fevers!!!! Why didn't he think to tell me that before?! I was so worried all night and today because he was having fevers and I thought he was getting sick. Silly me!
Elizabeth is sick but hopfully getting over it. She's getting blood drawn today to check her bone marrow compatability with Henry. I'm glad Joel's the one taking her to do that! They leave tomorrow on the airplane for home. I'm so sad I don't know if I'm even gonna get to say goodbye because we don't want to risk Henry getting sick. But we'll see.
Did I mention that one wall of my room is a window! It's soooo nice and makes me feel a bit better not being outside any.
Henry's so strong and he's so funny. He was watching the nurse as she watched his resperations and then started smiling at her and talking to her. It was the cutest thing ever! He's sleeping a bit more but that's alright. He needs to sleep. They started him on the 24 hour Chemo today and that will run for five days. We'll make it through and then we'll see how strong his body is afterwards. Thanks for all your prayers and support. Take care of my baby Elizabeth for me!

My BabyMutantNinjaTurtle!

I always get the order wrong, but this is after we played and he was all tuckered out. :) The whole time I was taking pictures he was shaking his head at me, and wouldn't wear the hat. After he was done and wanted to nap, he needed his hat.

I know he looks drugged... well he is! But doesn't always look like this. The camera just acts funny sometimes. I think he's more glaring at me cause he didn't want pictures of himself in his turtle shell.

This is the new brace that Ortho made for Henry. It has trucks and race cars and flags and boy stuff all over it and blue so it matches his eyes. It's awesome. Should help him sit and play with out wrecking his spine anymore. We're still adjusting/fine tuning it, but it works alright. He has to build his muscles back up so he can hold himself with it on.

Aggressive Treatment

We talked to the Doctors today about Henry's treatment. He's not making as much progress with the chemo he's on right now, so we're moving to a more aggressive chemo. The plan is to use these new types of Chemo to wipe out his bone marrow. Which puts him at zero with his counts, and very susceptible to any kind of virus or bacteria or anything else. The chemo lasts for five days or so and then it will take about three weeks to build his counts back up. Which puts us in the hospital for a month. We're doing two rounds for a total of two months. Which means that I won't be able to have Elizabeth here with me. I know all you at home are cheering because you miss Elizabeth. Joel will try to get on day shift and take care of Elizabeth for two months. After that if all goes well here Elizabeth can come back because Henry will be on maintanance chemo.
Joel asked to take her home for the summer and I wasn't willing to part with her, but the situation we are facing makes it impossible for me to take care of her here. So I have to part with her for two months and it breaks my heart. Today she spent the day with Mandy and Finley and was so excited to see Mommy when she got back. She has a runny nose and a slight cough. I am hoping its just allergies but I made Joel take her home to the RonDon immediately so she wouldn't get Henry sick. She was broken hearted, and cried the whole way down the hall. I don't know how I'll survive with out her. But Henry needs me more right now.
The side effects of these chemos will make him lose his hair and get sick more often feel nauseated and possible need greater pain meds. The Ortho team created a brace for him to wear while he sits up. Supposed to help keep his back straighter. The Ortho Doc said that the babies he's seen with LCH most always recover from the back fractures and don't have issues when they get older. They are young enough to rebuild their bones. So that's encouraging. They HemOnc Doc's said that they have had success with this new treatment so I'm really hoping that it works. I am hoping that we didnt' wait to long for the vinblastine to work, and the LCH progressed to far. I try not to think about the bad side of things but I wonder.
That's what's new here. Not much fun but, if it works for Henry it will be worth the two months with out Elizabeth and Joel. The other option is bone marrow transplant, not very successful with LCH but it's an option. The only likely donor is Elizabeth, with in our family. They are gonna get a sample of his blood to test in the "system" to see if there are any matches. So that if we need to move to that option of treatment we'll be ready. So those of you reading this if you could continue to pray for Henry and pray that this treatment works for him. He's so strong and I know that we'll make it through. Thanks for your continued prayers. Much love!

New Plan

Henry's new blanket was given to him by a friend, Ashley. We needed to wash his blanket and he wouldn't part with it. We didn't really want to take it away from him during a rough day. So we tried this blanket and he loved it. Very soft.

This is the room I'll be living in for the next few months. New plan for treatment means Henry and I will be living in the hospital most of the time.

A final picture of his wonderful hair. With the new doses of chemo he'll be getting he'll lose his hair. I know he doesn't have much of it, but I really love his beautiful mohawk!

Seattle Temple Grounds

We went to see the Temple last Sunday after dinner. It was wonderful! So peaceful and Elizabeth really really loved the statues. It was next to impossible to leave we had to promise to go back again soon. Every woman statue was me and the man was daddy. There was another statue with a woman and three children. Elizabeth said look it's mommy and Elizabeth and girl and Henry! It was adorable. She played ring around the rosie with them.

This is a view from the garden area, with some sheltered paths. It was beautiful even with out blossoming flowers.

Henry was supposed to hold the mans hand but he couldn't reach. So fun to watch Henry watch Elizabeth. He sure loves his big sister these days.

I think she wanted to stay and play with them but when they wouldn't fall down and the end of ring around the rosie she wasn't sure they were much fun anymore. :)

One of these days I'm actually gonna have the chance to go to the temple here. Maybe while Joel is here I'll get to. Sure miss going.

Day at the Park

This was a few weeks ago, but this is our usual park, it's up the street about 8-10 blocks and Elizabeth loves it! She has really learned to love the merry go round.. which makes me ill but I had to get some pics of her!

Any open space and Elizabeth is running through it. She's so couped up at the house sometimes that she just has to run wild for a while outside. I love to watch her just enjoying being outdoors.

There are about four slides at the park but Elizabeth only likes the twisty one. :)

Incredibly she is strong enough to go back and forth on this thing with out falling down. When Grandma and Grandpa Miner came they pushed her back and forth on it and she loved it. Since then we always play on it when we go to the park. I have to push and run and catch and then push and run and catch.. :) Great exercise for me!

Hospitals make us worse?!

So on Wednesday last week Henry was throwing up, which I believed to be caused from a missed dose of Zofran. However, with fevers and vomiting they admitted him and took him off his feeds and put him on TPN which is basically nutrients and fat. So he doesn't lose weight while he is off his formula. All the fluids made his belly swell, which caused more concern and he was in great amounts of pain on Thursday. He wasn't able to move with out screaming in pain. Not usual. So they took x-rays of his abdomen and we did a really cool gut test, where they take quick pictures of fluid being put into his stomach and then watched where it went and how his intestines were working. All they found there was gas, constipation. However after asking them repeatedly about his back, they finally looked at the x-rays to see if his vertebrae were any worse. His fractures start at L1 and go to T9 or something like that and are getting much worse, to the point he can't sit with out much pain. Finally yesterday they gave him mirilax and he had some good dirty diapers and his tummy relaxed a bit and he was in less pain. Miracle... happens pretty much ever time we're admitted I've never seen doctors so excited about gas and poop!!! Last night he had some Oxycodone and Methadone with in an hour of each other... both basically relax you.. so together maybe relax you too much. He set off all the alarms because his oxygen levels were low, and they were so concerned we got more x rays of his chest and he was put on blow by.. a blue tube of oxygen that blows by your face, much better than the nasal prongs that go in your nose.
I know it's all a bit jumbled together... but in our eyes we were fine Wednesday got admitted and then got progressively worse each day. I keep telling myself that there is a reason we needed to be admitted. And I think we've figured it out. The compression fractures are much worse than they were in January and while his bowels are still acting up nothing is wrong with them, but we are going to have to sit down with the Doctors and talk about where we are in the treatment and that we'll probably need to vamp up his chemo treatment if we're gonna make any progress. He's been doing well but pretty much plateauing.
The only issue the doctors are left trying to figure out is whether or not to put him onto bone density drugs, or just to increase his calcium and Vitamin D to help build his bones back up. Steroids every other week is a bit much for his body and could be what's causing the back to get worse. On the other hand the Ortho guy feels that it's the LCH causing problems with the back. So once we get that sorted out we'll know what we're gonna do. They are gonna fit him for a brace to wear so he isn't allowing the vertebrae to slip or get worse. Hopefully. So in a nut shell That's what we've been doing the last few days.
Joel accuses me of making the blog seem like we're on a vacation... I like to focus on the good days rather than the bad ones... so when we get out and play and have fun I'm more likely to take pictures. I don't want Henry remembering how horrible he felt and how rough things were. We are so blessed and have so much to be happy about. Watching General Conference only built my testimony of that fact. While our trial seems insurmountable to others, the things they are enduring may seem overwhelming to us. The Lord knows us and gives us trials that He knows we can handle, he doesn't doubt we have the strength only we do. We learn from our trials we grow from them and hopefully at the end of all this my testimony will be firm and I will have learned what the Lord intended me to learn. I can not say enough that we have been so blessed and I know it's because of all our friends and family that are praying for us and putting little Henry's name in the temples. My heart is full of gratitude to the Lord and all of you! Much Love.

Hospital Life

So in this shot you can see his rash, and enlarged belly. We relate it to being pregnant. Poor little man. The big belly puts pressure on his back causing pain and his lungs which makes it harder to breath. Not the most comfortable.

After being on fluids for a day he swelled up really bad in his eye lids.. no where else.. just the eyes. He couldn't hardly open them.

This is his special stand.. too much going on for a normal size one, so they had to get the dual pump thing and he is hooked up to machines for food, monitor his oxygen level and meds and everything else!