Friday, May 29, 2009

Cuddle Bug

Even though he screams when I walk too far away from him, he does love to cuddle mommy and he's getting to that stage again, where he hides in my chest when someone says hi to him. He has so much love to give! And I'm so glad he loves mommy and brings me so much joy! His new favorite thing is throwing food on the floor, because he gets so many laughs and smiles from all his adoring friends. He actually ate some brownie and bread yesterday and some sausage today, so his appetite is building, even if most of it lands on the floor for a few laughs! What a silly boy! The tubes on his shirt are part of his new Hickman line. He used to only have one tube, but in April he had to have a small surgery to replace the old with this newer bigger line. Every day I get to flush it with saline and heprine, and every week I do a dressing change to keep the exit site clean. I do think that all this training is preparing me for a future in nursing... I already know so much about it.. we shall see. I do want to start taking classes online though of some sort... that would be great. Being so close to UW makes me miss the classes and the learning. Okay so I was just going to post the pic with a few words.. but I have a problem with rambling on and on.. sorry... We'll work on getting some more fun pics... I have tons on my phone.. just don't know how to transfer them yet.

Peace of Mind

I am so excited to have Laci come and visit. I can't usually talk to friends at home with out crying my eyes out after I get off the phone! I am sooo homesick, for my home and my neighbors and my daughter and husband. And yet, I know that the Lord has blessed us so much! I have an opportunity to share with everyone in this house what I believe and the peace and joy of the gospel. I have been feeling very selfish, having this peace in my heart and mind and seeing others struggle so much. I am still so shy to share.. normal fears I guess, but I'm doing all I can to befriend them and hopefully share with them what I know. So I am grateful for the opportunity to be here.
I was given a journal by my college room mate with a poem on the front, "Footprints in the Sand" and so often we think what we are called to bear is at times unbearable, but I know that through the atonement we aren't carrying our burdens on our own, I fear that if I had to the weight would crush me. So I must say that I am so grateful for my Savior and the pain and anguish he endured to help me through the hardest times of my life. As much as I wish everyone here could be blessed with the miracle they want, I wish more that they could know the joy of the gospel. We pray so often for those that are sick and afflicted, what about those that have gone astray, those that are living with out the joy of the gospel, they may be in more need of our prayers. The Lord works in his own ways to bring about the salvation everyone. In Alma it talks about the Lamanites that were converted to the truth. They buried their weapons of war, and many of them were slain, while the wicked were not. But it was better that they were not, so that they would have the chance to repent and turn to the Lord before dieing in their sins. I'm not sure if any of this makes sense, but I think many of us take for granted what we have, and I know I am afraid of opening my mouth about the gospel sometimes, but lately I've been feeling very selfish about that. So I'm working on it...And I'm not gonna worry about missing home and being separated from my family, if I have the opportunity to share with others the blessings of the gospel.
Henry is doing so well. We are starting the bone marrow search now because his typing is so rare, however, we are not going to do the transplant unless he starts to get worse again. The plan now is to return to maintenance, chemo every three weeks, and hope the disease burns out soon. He looks so good, he is smiling and interacting with everyone. I am amazed at how strong he is and how easy he has made this experience for me, his strength has lifted me. I know that all your prayers are heard and I know that Lord has been blessing us because of your prayers. I pray that he abundantly blesses your families as well.
I love you all tons! I miss you and you are in my prayers too. I pray that we might be able to come home soon.

Tuesday, May 26, 2009

Home again Home again jiggety jig!

This walker was donated to us at the Hospital, we're giving it back because the new one is tall enough for Henry. But he sure loves using the that I mean sitting in it.. still working on the whole walking idea.
Got a new cute onesie from Grandma Keyport, it says I'm all the Buzz in Sandstone,'s so cute and it does fit Grandma. Thanks. He really likes the big bee. And the blue is great with his eyes.

Okay home isn't actually Home.. but the RonDon is home for us. :) They discharged us yesterday at 2:30pm. It was such a beautiful day that after Mandy helped us bring everything home we just dumped it and went for a walk. We went to Laurelhurst park and sat in the grass to play and take in some sun. Then our friend Christine called and we went to their house for some salmon burgers. yum.

Henry's counts went from 189 to 1035 over night. What a stud! He still has some major anxiety issues...I can't walk the length of the room with out him screaming his head off...or take a shower. He did sleep realy well though in our bed. So much softer. Also some one donated a brand new walker for Henry to use. It's tall enough that he can still grow and use it for a while. Which is really nice.

We went running this morning to the Montlake Bridge, it was really nice, there's a few parks further along the trail that we'll probably go to on a nicer day. Today is supposed to be a bit over cast, but the rest of the week will be in the high 70s yeah!

Well we're gonna get back to cleaning. Love you all tons. Thanks for your prayers.

Saturday, May 23, 2009

Delivered Safe and Sound

Oops I forgot the final stage of the trek....
We had breakfast and changed her clothes and boarded the flight. She curled up and fell asleep again. When we landed in sun Valley Idaho she woke up and got to go into the cabin and meet the pilot. She loved it. About 10 minutes before we landed in Idaho falls she said I'm going to miss you Stephy and Grandma. We landed and walked out of the Airport and she ran up to Grannie Annie and gave big hugs.
Delivered Safe and Sound

Anxiety Issues

My poor little Henry is having some serious anxiety issues. He was asleep the other day when I left to do laundry. I asked the nurses to keep and eye on him, and when I got back thirty minutes later he was at the opposite end of the bed with arms and legs through the bars, and screaming at the top of his lungs. So the last three days have been terrible. He won't go to sleep and when he finally falls asleep it only lasts twenty mintues and he's awake and screaming. He never wants me to put him down, so he hasn't slept much. If I put him in his walker and give him his blanket he almost falls asleep in it. So tonight I asked for some adovan to help him calm down and sleep. I wasn't sure it would work but miracle of miracles.. he's finally asleep and ...why am I still awake.. I don't know! But I'm hoping that he'll finally start to calm down a bit more, he's been in a "funk" so say the Doc's because he's so exhausted!
Another small update...they need more blood for the bone marrow search so.. we have to wait until his counts come up which means it will take a bit longer, and the way they are talking.. it may take a while to find a donor because of his rare typing.. but I don't know yet how to go about getting tested I'll ask the Doc's tomorrow. everything is waiting on his counts coming back up. Hopefully we'll get the hyper anxiety issues under control so we can get some sleep in the next few days.

Another Climb up the Butte

Elizabeth went up the Butte with Grandma and Grandpa and Stephanie. Steph says that she probably climbed it a few times because she would run ahead of Grandma and Grandpa with Stephanie and then she would run back because she thought Grandma and Grandpa needed help. She's so strong! I'm so proud of her! I loved days when I could get all dirty and have fun. :) What an awesome little girl.

$7 Investment

As we were deciding what to eat a couple police officers came by and talked with us. They gave her a junior police badge sticker. She put it on and said I'm like daddy. It was so cute.
After Eating she said we needed to keep walking so we would make it to Granny Annie's House. We walked for a while than sat to rest and she was so tired. She was having a hard time. After about an hour or so and a couple phone calls I made my best $7 investment I have ever made. Not two times through the book she was sound asleep. It was only 5 am by that time.

Seattle Airport Layover

Elizabeth. She told us that we should go to the play room were there were couches we could lay down on for our lay over. Elizabeth and I got half way there and She woke up. And when we got to the room all she wanted to do was run around.
She loved the toy airplane. I think it was because we had just got off one. At one point she climbed into the Toy turned the wheele got off and said were at Grannie Annie's House.

Over the Hills and Through the woods to Grandma's

"On our flight from Anchorage to Seattle she watched movies most the way. She was extremely well behaved. We got lucky and had an extra seat so I was able to scoot over about 20 minutes before we landed after the DVD battery died she decided she want to lay down. So she got a ten minute nap in.
Before she fell asleep she didn't want me to touch her at all but as soon as she was asleep she moved her hand and grabbed my finger and wouldn't let go. It was a little cute." (Stephanie)
Joel said that she cried a lot and didn't want Daddy to leave. He took them to the Chile's in the airport to bribe her with ice cream and cake but she wanted Daddy. That made him feel be better than ice cream and cake. :) The leash you see on her is also attached to Stephanie; so that during the trip Elizabeth couldn't run away. Elizabeth hated it but it helped Steph a lot.

Saying goodbye to Daddy was a bit hard. She had so much fun with Daddy and although she was excited to go see Granny Annie and Grandpa Larry, she wanted her Daddy too.

Stephanie documented their trip from Anchorage to Idaho with pictures and all. I'm so grateful that she was willing to travel with Elizabeth and minus a bit of exhausted drama...Elizabeth did really well.

Thursday, May 21, 2009

Just Waiting

So to catch everyone up on the last week or so, Henry finished his second round of chemo and did very well. After chemo finished he started getting fevers again, and having a lot of nausea. The nausea is under control now, but the fevers are persistant, so they are getting a CT scan of his sinus, chest, abdomin, and pelvic area to make sure there aren't any infections hiding from them. Our Doctor, Ann, came in the other day to check on Henry and she explained that they were starting the search for a bone marrow donor. Elizabeth isn't a match, something rare in Henry's typing. They aren't excited about how he's looking, although he's made a little progress, his belly is still huge, and they were hoping that it would, by this point, have returned to normal size. So they feel that it's important to get everything ready for the bone marrow transplant, so everything is ready if we decide to continue down that road.

I was talking with another mom about how strong Henry is, he hasn't lost any of his hair and he hasn't had any sores in his mouth and he hasn't had many other side effects from the chemo, other than nausea. He's endured a lot very well. Lately he has found that if he screams continually mommy will take him on a walk around the floor, so he screams a lot. Last night he didn't stop crying until 5am. He was soooo tired but wouldn't let himself go to sleep, or something was keeping him up and I don't know why. I tried so hard to remain as loving and calm as I could, but by 5 am I was starting to lose my mind. Luckily he cried so much he couldn't stay awake much longer. I think he's back asleep right now. They had to stop his feeds at 2am so the CT scan would be clear. I'm trying not to eat in front of him. :)

The ladies from the Relief Society in the Seattle 3rd ward have been incredible. They have started taking turns making me dinners; cafeteria food can only feed you so long... However, Mandy did go to Trader Joe's for me to pick up some frozen entrees which was awesome! The best part is that most every one eats really healthy so I don't think I'll have to worry about gaining weight. But on top of my run every morning and walking Henry for hours around the floor, I'm not sure I need to worry about that. The nurses want me to get a pedometer so I can check how many steps I'm getting. Oh and a family donated a walker for Henry. He's been in it a few times but doesn't quite get it yet. There is a beautiful little girl that's 9 months old, her name is Ashlynn and she's a speed demon in her walker so I figure it will only take a few more days of Henry watching her do it and he'll start to get the idea. He would rather sit in his stroller all day but we're trying to get him strong enough to start standing and walking.

Right now, I'm praying that Henry's liver and spleen get smaller so that his belly returns to normal size, with out needing to do the bone marrow transplant. But if we need to do it, I think he's been well prepared for it to be successful. Thank you again for all your prayers and kindness. The Lord has truely blessed me with wonderful family and friends to support me in my times of weakness. Much Love!

Monday, May 18, 2009

Jim Creek Clean up

We decided we had been tag alongs too long so Lisa let me spend a little money and we bought a Off road Jeep to explore in. For years we have fun going out with Ryan and Laci but we never had our own vehicle to drive. I found a 1983 Jeep CJ7 for sale of Craig's list and worked the price down a bit and ended up buying it on Saturday morning. We took it straight out to Jim Creek for the cleanup. I was crossing my fingers and almost half expected it to die but it never did. It ran great. I don' know much about the technical off road stuff but according to Ryan and his brother Daren it was a good deal and was already set up with everything I needed. (Its also supposed to be easy to work on and fix, which we will see :) Laci drove it out, I drove it around until my foot was swelling, and then Ryan drove it back. We strapped Elizabeth's car seat in the back so she could see all around her. We all had a blast. Elizabeth then got to ride with Cindy on the 4 wheeler back out.

Sunday, May 17, 2009

I'm going to miss her

POSTED BY JOEL: I have had so much fun with Elizabeth here in Alaska, I will post more pictures later. On Thursday she will leave with Stephanie to Idaho to spend time with Granny Annie and hopefully drive to visit mommy as soon as Henry is well enough to have visitors. We have had about a month and a half together, cried together, laughed, and played a lot. I think I spoiled her playing tickle monster, eating waffles every morning, and watching movies every night. I have a much greater appreciation for mothers and single parents now. I wish I had 1 percent of the energy she has. When I broke my toe chasing her around the kitchen playing tickle monster, she saw I was in pain and realized I was not playing anymore, she impressed my by climbing onto the couch next to me and said a prayer all by herself, she asked to "bless daddy, and bless daddy, and help daddy and make daddy feel better and bless Henry" and then ended it and asked me if I was better yet. Oh the faith of a child. I will try and post more frequently so everyone knows what is happening on both ends of the family.

Forgive the Rambling...

I have been fasting and praying that Henry would be healed. I have prayed continually that his bone marrow will be rid of the LCH as well as his spleen and liver. However, when the brethren from church arrived I did not ask them to give Henry a blessing. Although clearly he is in need of one. Can a person be healed by prayer and faith alone or is it necessary for brethren holding the priesthood to administer to him? Am I acknowledging the Lords power in my prayers and then showing a lack of faith by not asking for a blessing? And how many blessings can a person receive, is it wrong to continually ask for blessings through out the same trial? If one is in need of counsel from the Lord or a blessing of strength one week and another the next...can a person seek blessings too often? Or is that prideful? Why didn't I ask them to give Henry a blessing if I know that the Lord has the power to immediately heal him? Do I really have that faith? If you need more than one blessing is that a weakness on your part, did you lack the faith initially to be healed or receive the guidance needed? Are there limitations, I would assume not, but I am sincerely desiring to know what the Lord teaches us regarding priesthood blessings and if it's possible to over use them... do we continue to ask for blessings because we don't receive the outcome we hoped for, or because we wanted something else said? Am I seeking a blessing because although the Lord promised me that Henry would over come this disease, it isn't happening quickly enough for me.. am I simply impatient? I know that my desires have changed and I have come to realize that accepting the Lord's will doesn't mean we quit praying for what we want. I could sit around and say that I will accept the Lord's will and then just wait to see what happens, but I could also pray for Henry to over come this illness, according to the Lord's will. My sister explained that the Lord loves us and if we pray and pray and continue to pray eventually the Lord will give us what we are praying for; Joseph continued to ask that Martin Harris be allowed to take the transcribed pages and eventually the Lord allowed him to even though it wasn't the best thing to do... as they were then lost. But if we are persistent then the Lord will eventually answer us. Am I being too idle in my spiritual care over Henry? Am I too afraid of what may come, or getting too impatient... I know the Lord has a plan and I have to learn to trust Him and do his will. Is sitting and waiting and watching doing his will or just watching life happen? Shouldn't I be anxiously praying for the welfare of my son rather than watching him day after day go through this trial. I have continued to learn so many great aspects of the gospel and my faith and my testimony have been strengthened but this is one area that I continue to struggle with. I know the power of the priesthood is real and that we can be healed, the Lord is all powerful, and yet we have to endure certain things in life and with out those experiences we wouldn't grow and gain that knowledge. Is it wrong to seek after my own desires? Can it be wrong to ask that the Lord heal Henry tomorrow? If I had enough faith would the Lord head my cries and could we be home next week, even if the Lord's plan says otherwise? When do I know that my will is in line with the Lord's? We both want to see Henry out of pain and discomfort, perhaps it's just our respective time lines are different?! Or maybe I'm just incredibly homesick!

Thursday, May 14, 2009

Waiting for Zero

Henry wanted to show you the medicine he has to take. Every day he has about 12 of these syringes to take. He does so well the nurses are always impressed with him.
Just a "hello" from Henry to eveyone! We love you and miss you all. Henry says thank you for all the prayers. We are praying every day that this treatment will clear his bone marrow of all the LCH.

Henry has been doing so well these last few days, the only major problem he's having right now is nausea. This round he hasn't had as many fevers and he hasn't gained a ton or water weight which also means he isn't swelling as much. We have food trays ordered for him and he hasn't really been interested in any of it yet, however, today he was pretty into my roast beef sandwich. He's the sweetest little boy, always wanting to share his food with mommy; he even bites off little pieces of his food for me. It amazes me how much he actually picks up and learns from watching me and others around him, because he doesn't say anything I just assume he isn't learning it. But you can tell by watching him that he knows what's going on and he definately knows what he wants. Yesterday on the webcam he was making bear grows back and forth with Elizabeth it was really cute. He misses Daddy and Elizabeth so much.

Tomorrow at 11am his last dose of chemo will end for this round. YEAH! Then we just wait for his counts to hit zero and come back up. Right now his ANC is 940, his platelets are 20, which means tomorrow he will probably start getting platelet transfusions and blood every other day or every day. Depends on his body, but it seems like this round he's done so much better.

I was reading an article about examples in peoples lives of how applying the scriptures to their own lives helped them with a problem they were facing. So I put the magazine down and started to read in Alma where I left off last night. I'm at chapter 29, the one that starts off with "Oh that I were an angel and could have the wish of mine heart..." After proclaiming this he continues to say in verse 3 "...I ought to be content with the things which the Lord hath alloted unto me." and in verse 4 "...I know that he granteth unto men according to their desire, ...I know that he allotteth unto men, yea, decreeth unto them decrees which are unalterable, according to their wills, whether they be unto salvation or unto destruction." I don't think I ever really read this verse before, all I have highlighted in my scriptures is the beginning of the scripture, "...he granteth unto men according to their desire." Which sounds great! If I desire it the Lord will give it to me. :)

What I've learned here is that the decrees are experiences in our lives, unchangeable situations, that the Lord has put before us. He knows exactly what we are going to face, BUT it's our choice, our decisions that decides whether the experience will lead to our salvation or destruction. Some times it seems like so many bad things are thrown our way, or maybe it's just one major trial, but whether that experience is good or bad depends on our attitude and how we respond to it. While Joseph was in Liberty Jail, he cries unto the Lord and the Lord tells him all these things shall give thee experience and shall be for thy good. Every experience in life teaches us and can lead us closer to our Father in Heaven but we have the ultimate choice. Our Father gave us agency to choose for ourselves.

Verse 5 "Yea, and I know that good and evil have come before all men; him it is given according to his desires, whether he desireth good or evil, life or death, joy or remorse of conscience." The Lord does give us what we desire, in that he allows us the agency to choose.

Verse 6 & 9 "...why should I desire more than to perform the work to which I have been called?"

"...this is my glory, that perhaps I may be an insturment in the hands of God."

My own experience of applying the scriptures to my own life. We decide whether we will have joy or pain, we decide whether an experience will teach us, or draw us down.

Monday, May 11, 2009

Talking to Ourselves

Henry always wants to talk to Daddy on the webcam and when he uses his signs for wanting to talk on the computer I'm supposed to bring it to him, however, lately our schedules have been off so we haven't been able to chat much. So Henry screams and cries because he wants to talk to Daddy and Elizabeth and can't. So I decided today he could talk to himself on the webcam and it worked for a few minutes. Made him stop screaming anyways. :)

Watching Dora the Explorer, but also listening to his classical music. He loves music! Any cartoons with singing he enjoys. My kids must have acquired that some where right Grandma??...
Oh yeah, Daddy when you get around to it, Henry really wants a Dog, I think he's partial to spaniels. :)

Elizabeth at Home

All of these pics were provided by Stephanie! Thanks Steph for capturing some of Elizabeth as she grows!!! The "tomboy" outfit Steph got for her. I have to say the shirt is sooo cute I love it! And she is getting so big and beautiful!! I can't believe how fast she changes.

A day at the A Moosement Park. :) She loved it so I heard...What a little monkey.

Of course hitting the slides.

What a beautiful little girl! Oh how I miss her! It breaks my heart to be away from her and everytime she talks to me on the phone and tells me she loves me and misses me I just about lose it! On the "marrow" the Lord will deliver us... I can't wait to be together as a family again. Good thing we have eternity!

Sunday, May 10, 2009

Beginning of a Bad Week!!

Henry has been sleeping much less than he used to, however he was just given a dose of benedryl/reglan... he couldn't help himself. :)
The belly is actually much smaller when compared to a few weeks ago, some day it will be gone completely and you'll all think I was just making it up.. The rolled up blanket with coband on it, is the tube for oxygen "blow-by"

Really only likes to have his blanket it his face, but if he moves too far away from his oxygen tube the alarms sound and mom shoves it back in his face again. At least the drugs help him sleep heavily enough he doesn't care anymore.

Well we began round two yesterday morning, and today Henry is feeling awful to say the least. His nausea is back a bit worse than last time, and much more grouchy with mom. It's awkward to hold him right now because he's hooked up to so many things, and attached to sat monitors and oxygen again, I think many times Henry feels more comfortable just laid out in his bed.

This evening we moved we have our own room again! YEAH. So much more convenient and private. Although the window isn't very big, I'm grateful to have a room of our own again.

Our nurse decided to check Henry's oxygen levels this afternoon and decided he was too low, and in need of blow-by again. I'm not sure why but the monitor alarms drive me mad... my blood pressure spikes and I'm ready to start breaking stuff and tearing things out of the wall. Scary I know, not sure why it happens, but I've started practicing my numbers again.. 1..2..3..4..and if that doesn't work I have to try breathing slowly. A bit dramatic I'm sure, but it makes life a bit more stressful and nights a bit more sleepless. The resident on call said that when we have fevers, high fevers like Henry is having, we tend to need more oxygen. Since Henry's lungs aren't the strongest, due to his rather large belly, he needs it even more. I guess the only thing that calms me down when everything starts alarming is thinking to myself that Henry really needs it.

On the plus side, Henry is definitely more active and way more interested in playing than laying in bed sleeping. A friend down the hall has a walker for her little girl that she found at WalMart so I'm thinking about hitching a ride or having someone pick it up for me so Henry can start practicing and exercising.

Wednesday, May 6, 2009

Alaska Grown!

Terri Baker dropped off a few t shrits for us so we wouldn't forget where we are from and where we want to finally be someday! Although I think Henry has spent more time in Seattle we'll call him a definate Alaskan boy. :) Thanks so much Terri and Gary we love them.
Henry's new favorite game is peek a boo! He doesn't always cover both eye's but that's alright it is adorable.

He Loves the camera and seeing himself... he gets really excited to see Daddy on the computer too! Sending out a Henry wave to everyone! Love you and miss you all.

Round 2

Henry's rash is starting to come back a bit, so the doctors decided today that he should go back into the hospital on Saturday instead of Wednesday. So we'll start round two on Saturday. He's been doing sooo well! Playing and smiling and happy, talking to everyone and playing peek a boo with everyone. He's even more of a flirt now than before if that's possible. The nurses just melt when he smiles at them. He waved at the Doctor today and she just about cried again.. she's pregnant so maybe more emotional than normal but it made her day. What power he has.. ahhaha Anyway, we also found out that Elizabeth isn't a match for the bone marrow. They look at six different "things" when matching and Henry, of course, has one very unique thing so we'll have to depend on the database for donors. Henry has never been one to "fit the norm" so I don't know why I was suprised. Oh well. We're hoping that he doesn't need the bone marrow transplant. He seems to be really responding well to the treatment. His ANC is well over three thousand which is incredible! And his white cells are up and so are his platelets. All on their own, which means there is less LCH in the bone marrow. He did get a blood transplant today, but his counts held out longer than they were before. So definate progress!
This time around we shouldn't be in the hospital quite so long. Probably two and half to three weeks. Depends on how fast he recovers.

Back at home, as some may know, Joel is having some very bad luck! Not sure what else to call it. After figuring out the day shift schedule at work, so that he could take care of Elizabeth and work, Elizabeth got sick. So Joel asked for another week off of work to take care of her, then he got sick and asked for another week off, and yesterday he fractured his toe!!!! So now he's out for possibly six weeks. We are sooooo blessed to have a good job. I think the Lord has a pretty good sense of humor, not sure Joel would agree, but it's definately been an interesting few weeks. Elizabeth will head down to Granny Annie's house in Idaho in a few weeks and then when Henry is recovered from this round and back on maitanence, she'll come back here. Joel's considering writting a book about the worse year of his life. I'm sure that will only set him up for worse years but it would definately make you laugh and cry at the same time! So those of you with Henry in your prayers, perhaps you could also include Joel and Elizabeth! :) I just keep thinking of Elder Worthlin's talk about "come what may and love it!" And when he told us to learn to laugh more, instead of getting angry over things that happen we should laugh over them! So we're trying to have a good laugh over this one. I'm wondering what the Lord has in store for us next. COME WHAT MAY!!!! :)