Day 5 Conditioning

Last night didn't go so well...The power went out for some reason all over the neighborhood... at the hospital and the RonDon. The problem in the hospital was that even after the power came on the air conditioning wasn't working so the rooms were like 80 degrees. Most patients were awake in wee hours of the morning walking the halls because they were cooler. The residents of Seattle are dieing from the heat. Yesterday was a scorching 103 and today is supposed to be 99. I'm loving it... Elizabeth and I went to the Laurelhurst Park this morning while it was cooler, but still ended up sweaty and hot! Couldn't drink the ice water fast enough. LOL I think I forgot to turn on the air conditioning at the house.. oh well I don't mind... I hate freezing in doors when it is so nice and hot out doors. I know...why do I live in Alaska again.. hahha aure Oh yeah the other fun thing at the Laurelhurst Park is that it looks over Lake Washington so we got to watch the Blue Angels practicing overhead. Loud but exciting.

Henry was excited to see Elizabeth. He loved to play with her hair.
Daddy needed some more shut eye since they were awake all night last night. Poor guys. They always seem to have a rough night together.

Henry was pretty tired, but I'm sure the warm arm felt good since he was sitting under the cold aircondition vent. :) So cute together! I love when they are so sweet with each other.

Day 4 conditioning

Cuddle time with Daddy

Sharing cracker snacks with Elizabeth

Holding the ballon....

And letting it fly! :)

He was giggling so much it was funny to watch him get excited about the balloon flying and then wanting it back so he could do it again. Too much fun.

Day 3 Conditioning

Play time usually involves....

turning the table over
... watching Cartoons on TV

...dancing to the "imagination movers"

...and of course brushing his teeth. :)

He really has the cutest smile!

Strength

Henry has been so blessed by all of your prayers! He definately has gained great strength and is loving it! He rolls around his bed and pushes himself around the room backwards in his walker. Yesterday Henry kept Daddy awake until 4am. The nurses loved it, he flurts with all of them. :) He wanted to play. So we're on day two well onto day three but he's handling the chemo like a champ. We'll see how it continues to go. But thus far all is well. Right now we're hoping to get a bigger room, not much playing room. So he's on Campath and Fluderabine and the count down is at one week exactly. :) We're so excited! Thanks for your prayers, our family is fasting on Sunday for Henry and his transplant which is Monday. If any of you want to join us, we would be most appreciative. Much love.

Day 2 of Conditioning

Treats all around and yet all he wants to do is empty mommy's purse. :)
Did you need this reciept?

He's just so interested in the contents of my purse and emptying them. Uh oh.. he found the change pocket better make sure he's not swallowing any..

What are you doing Henry? Uh Oh I think she caught me!!

Cord Blood is in House.

We had the meeting with the doctors today. The Hospital got the Cord Blood today from a storage facility on the east coast. Now that the Hospital has the Blood we are good to start conditioning. On Sunday He starts with Campath a drug used to wipe out his own bone marrow so there is room for the new cells to take over. As Lisa posted earlier in a previous posting our Bone Marrow donor from Europe fell through and for whatever reason will not be donating the marrow. This at first seemed like a big stumbling block but come to find out it might just be a blessing in disguise.

They were able to match him with a cord blood donation. The down side is that Cord blood takes longer to graft into bone marrow and takes longer to start producing white blood cells. The good side is: Cord Blood contains stem cells from an infant, the bone marrow it will produce becomes a brand new immune system with usually causes less severe Graft Versus Host Disease. When a person gets a bone marrow transplant they are basically getting a new immune system, when you get that from actual bone marrow from an adult donor you are getting their immune system, unfortunately rarely does the new immune system like the new body and thus attacks the body thinking it is foreign and harmful.

GVHD can range from a slight rash similar to an allergic reaction, to life threatening complications and lasts in some cases more than 5 years. Recent studies have shown that cord blood transplants have less severe GVHD because the infant immune system learns to tolerate the new environment more like a new born acquiring an immune system, rather than teaching an old dog new tricks (or an old immune system a new body). I explain it as simply as I can, trust me this is easy reading compared to what the doctors have given us.

So enough with the medical stuff. Henry has been gaining much needed weight and strength. He sits with no problem, he is close to crawling and ends up going backwards. Today he just learned how to use his legs to propel his walker, backwards of course, buy hey its still mobility! He can support his own weight on his legs for about a minute. This is very exciting for us. He still has compression fractures in his spine but his back looks less stressed than a few months ago.

Elizabeth is just as crazy as ever. I feel the weight of the parental curse, you know the one, "I hope one day you have kids just like you". Well Mom and Dad, it worked, now how do you feel? Your probably laughing and enjoying every minute of it.

Well this is my 2nd night with Elizabeth and tomorrow I switch with Lisa and I get Henry at the Hospital. Our life is now organized into 4 days. Day 1&2: I'm at the hospital with Henry, Day 3&4 I spend with Elizabeth, then back to Day 1 again. I rarely know the actual day of the week or the date.

I have been playing around with my 457 retirement account when I'm bored. I started playing the market a bit buying and selling stocks. It almost becomes addicting, some say it is a form of gambling, I guess it could be, but after a few sells and different buys, my account has 30% more than it had 2 weeks ago, compared with if I had kept everything the same it would have only been up 4%. But then it is the stock market, by Monday I will be down 30% again right? Unfortunately it is all just numbers, I can't touch the money till I'm retired anyways. As long as it beats inflation that is all that matters.

Well I have been going on and on about nothing of importance so I'll add some pictures of Henry and call it a night.

Sleepless in Seattle

First a picture of the Sail on the boat. When they let it unravel Elizabeth yells.. Look a dinasour!!!.. :)

This is the actual house Tom Hanks stayed in During the filming of Sleepless in Seattle. :)

And the bench out on the dock that they sat on and talked...

you can see the bench in this pic if you look at the end of the dock... I thought it was pretty exciting. And the driver of the van took us to the spot where Meg Ryan parked .. in her stocker mode.. :)

Here's a picture of the dragon boats. Kind of hard to see sorry.. but it was cool to watch Elizabeth waved at them all during their rest and they waved back. I think my arms would be too dead to move. :)

Pics from the 'Mallory Todd'

The lake was pretty packed, everyone and their cousins were down at the lake celebrating summer solstice. The Gas Works Park, pictured below was packed by the time we left the lake.

Definately fun to watch the row teams and the dragon boat races. Not offical races but still fun to watch.

Elizabeth and Henry both got to steer the boat, they were a little disappointed the boat didn't go faster. :)

Sailing on Lake Union

Elizabeth and I went out on the Mallory Todd yesterday. Sailed around Lake Union for a few hours and enjoyed it for a bit. With only one person to chase and handle Elizabeth, it was a bit stressful!!! There were 12 children and 10 adults, not including staff, that went out on the boat. The Mallory Todd takes sick kids and their families out on the boat, give them something fun to do. :)

Getting ready for the ride down to the Lake, Elizabeth, and our friend Henry from China were both very excited to get going.

Wonderful Man

I have to brag a little...my husband stopped by the hospital room at 8pm with Tillamook Vanilla Bean Ice Cream and waffle cones. I've been telling him how much I wanted baskinRobins waffle cones and ice cream. So he packed a pot full of ice and brought me ice cream cones. :) Sweetest thing ever. He is always trying to do something special for me, I really am a lucky lucky girl! I know that those of you ladies with husbands think your man is the best too... it's the little things they do that let you know they are listening and want to make you happy. Thanks Joel I love you!

North Pole, Alaska... on our way to Chena. You can't tell but I am very very pregnant with Henry in this one. :) Oh the good ol' days.

Change of Plans

The Doctors came in today and told me that the Donor has been deferred...which means they aren't going to use that donor. I was a bit let down, the severe drop in the roller coaster ride, but for whatever reason they aren't using her, she wasn't a good enough match for Henry. So instead of waiting another month or two for an unrelated donor, we are moving forward with a cord blood transplant.
The nearest cord blood match is the SE somewhere, so in the next week or two we'll be doing the transplant, hopfully just delaying transplant by a few days. The Doctors feel it's in Henry's best interest to go forward with the cord blood transplant because of his condition; he isn't responding as well to the chemo and steroid pulses anymore. His poor little belly is getting bigger every day, liver and spleen can't take much more.
The possibility of getting Graft verses Host Disease is always there, however, some research shows that with cord blood it's less likely and if you do get it, GvH then it's less severe. The only real difference between the unrelated donor and the cord blood is that the engraftment will take longer, which means longer in the hospital.
All in all we're accepting what comes, trusting that the Lord has everything in control. Henry is still happy and loves to play with big sister. Thanks for all your prayers, you are helping Henry survive this trial. :)

Peace of Mind

Joel and I are taking turns posting, just so everyone knows we are both writing, I guess we'll try to make sure everyone knows who is posting.

Anyways I was just thinking today about the scripture that says something like... my peace I give unto you,... and also the scripture in 2 Corinthians about glorying in our infirmities...I wasn't sure that I understood. but after really thinking about it I have decided that I do glory in my weaknesses. To witness the hand of the Lord in my life, witnessing the strength he gives me to handle every situation that comes before me. To better understand the atonement, that although I am imperfect, every day I can ask for added strength and comfort because my Savior knows exactly how I feel and can give me the strength to endure. And with everything that Henry has endured and faced, I have been blessed with peace in my heart that everything would be alright. I don't know what the future holds, and as my friend Carrie said, I don't want to see what is in the future. I don't know how things will turn out but I have great faith and trust in the Lord. He has a plan and he is kind and loving. And as Elder Worthlin said in his Conference address in April, for every tear we shed, he blesses us with joy ten fold...the principle of compensation. What the Lord takes away he compensates for an hundred fold later.

I don't know if any of this makes sense... maybe I'm just rambling again, but I just wanted to express my feelings. My gratitude to a loving and merciful Father in Heaven and Savior. The peace that I feel every day and the strength I am blessed with continually is from my Savior my advocate, he understands what we go through, each one of us personally, and he is there to comfort us if we will but ask for help and then trust in him. Elder Worthlin wrote to his daughter once, "The simple secret is this: put your trust in the Lord, do your best, then leave the rest to Him." I have learned if nothing else to trust in the Lord and have faith, and yes... leave the rest to the Lord.

I am grateful for friends and family that have strengthened me through this trial, I could not make it through with out you! You are the comfort that the Lord provides for me all the time. You are his instruments. Much Love to you all! Lisa.

Play Time at the Hospital

Elizabeth NOT sharing Henry's toys.
Playing peek a boo through the letter O. Henry wanted to try and that was Elizabeth's reason for not sharing the above toy.

The infamous Bee from the Bee Movie, who wiggles his hips in a cute little dance.

Henry's favorite truck, Santa brought it for him in June. He thought Henry needed some extra cheering up. But he loves that Jeep. Elizabeth is not allowed to play with it. :) Henry makes sure of that.

The cool mat we got for Henry's play sessions, he plays hard for a half an hour or so and then naps. His back can only take so much sitting and moving around. But he is definately gaining strength! Yeah. So cute. Here he is trying to put the block on his head, one of his favorite ways to play.

Distraction techniques

After dinner at Zao noodles, Elizabeth wanted to play at the fountain so instead of making her leave and creating tantrum monster we distract her with pictures or something else fun to help her move on. It is a nice fountain but we have to be very creative in our efforts in public to get her to do what we want. Oh the joys of parenting. She really is wonderful! She has a strong spirit and is very independent, and wants to do things in her own way. I love her for that!

Sorry if this turns out sideways I tried to fix it... didn't want to work with me... UGH.

Mama Duck and duckling.

Granny Annie taught Elizabeth how to climb the apple tree at their house... so now she climbs every tree she can! :) That's my girl!

Day at the Lake

We're still learning to use the awsome camera we bought, but I though this one was fun.. we got flash outside in the sun... and it really illuminated us.. but you can definately see where Henry got his baby blues. :)

Henry was going wild over the ducks as usual.. Elizabeth just wanted to chase them away. But it was really sweet. A mama duck and her one duckling. They got really close and we really enjoyed watching them.

Watching the duckies at the lake.

Flowers of Seattle

Not sure what their names are yet, but we were having fun capturing all the beautiful flowers and bushes around us. This really is a beautiful place, their grass is yellow or brown from lack of rain, but the flowers are incredible!

In Patient

So I just want to appologize. I have tried several times to post pics and it won't work for some reason. Please bear with us while we attempt to get it figured out. In the mean time, I'll let you know that we are back in patient. Henry has his fevers again, with no origin, just his body telling us that he needs some chemo and prednisone. Unfortunately he won't be getting prednisone anymore... well for now, which isn't bad, it just means the fevers may not subside. We are only a week away from conditioning before transplant so we are staying in patient until transplant. Joel and I are switching every two days. We'll see how long that lasts. My mom and dad are coming before transplant to help with Elizabeth and allow Joel and I to be here together with Henry.
Elizabeth is having a great time. We are making new friends and playing at as many parks as we can find. (There are plenty and lots of open fields close by.) She has to get outside for a few hours each day or she goes crazy! ME TOO! We went window shopping at the Gap Monday and ran around the store saying "look how cute this is!" Elizabeth loved it, she found the cutest hat and as much as I wanted to buy it... we moved on to something else that was much cuter! Unfortunately I didn't have a camera to capture it... another day. Besides she doesn't hold still long enough to get a picture taken... I don't know where she would have picked that up from!...:)
We got an awesome ALASKA package.. thanks so much it was fantastic!!!!! We do miss home and can't wait to get back..Joel more than I. Not that I don't miss home, I'm just loving Seattle.
As scary as the transplant can be..I'm really looking forward to it.. I'm excited to get started and get my baby healthy again. Although I realize that life will be this way for another two years while his immune system rebuilds, we'll be home and HOPEFULLY LCH free..!
Not much else happening, we're so happy and blessed to be together as a family.. I am most grateful for the employers Joel has, they have been beyond generous and kind to our family I cannot thank them enough but I will definately try. COPS are good people!!!!! :) I don't care what anyone else thinks!
Hope to have pics up soon. Love you all tons. Much love!

Medications or Drug Store?

Well Henry was discharged a few days ago and we are back at the Ronald McDonald House. The Transplant has been postponed about 5 days due to Donor scheduling issues. Henry will go In-patient on the 23rd of July to begin conditioning for the transplant. They give him several days of intense drugs to basically wipe out what bone marrow he has, so there is room for the new bone marrow to take over. The transplant should happen on the 30th of July. From what we have been told the donor is a 30-40 year old white Caucasian female living overseas (most likely Europe). Because it is an unrelated donor we do not get any further info now. The Donor has the option to give actual bone marrow (which involves over 100 punctures to each hip bone and several days of soreness afterwards), or to give peripheral stem cells (much less painful, involves taking certain drugs for a week which makes your body produce large amounts of stem cells, then the donor gets hooked up to a machine similar to a dialysis unit which filters the stem cells out of the blood and sends the blood back). It sounds like the donor chose to do the less painful method.

The doctors said historically they prefer actual bone marrow (the painful way) but said recent ongoing studies show the stem cells (though they take 5-10 days longer than straight bone marrow) might be better for the host by taking longer to take root and grow, this minimizes the immediate risk of Graft vs Host disease and makes it easier to keep under control.

On a side note, One of the applications I was doing this last week for Tefra required a list of all medications taken by Henry in the last year. It took a while but with some help from by wonderful wife she compiled the list here is what it looks like.

 Acetaminophen (Tylenol)
 Albumin
 Alfentanil
 Alteplase
 Atovaquone
 Azithromycin
 Bactrim
 Cafeprime
 Calcium Carbonate
 Cefazolin
 Ceftazidime
 Ceftriaxone
 Clindamycin
 Cladribine
 Cytrabine
 Diphenydramine (Benedryl)
 Ergocalciferol
 Emollients (TPN)
 Epinephrine
 Fat Emulsion (TPN)
 Fentanyl
 Fluconazole
 Flu Vaccine
 Furosemide (Lasix)
 Gentamicin
 Glycopyrrolate
 Hydrocortisone
 Hydroxypropel Methylcellulose Ophthalmic (eye drops)
 Heprin
 Ioversol (contrast)
 Immune Globulin Intravenous (IVIG)
 Lansoprazole (Prevacid)
 Lidocaine topical
 Lorazepam (Atovan)
 Lysine
 Methadone
 MethylPrednisolone
 Mercaptopurine
 Meropenem
 Metoclopramide (Reglan)
 Morphine
 Midazolam
 Ondansetron (Zofran)
 Neostigmine
 Oxycodone
 Propofol
 Palivizumab (synagis)
 Pantoprazole
 Pamidronate
 Parenteral Nutrition (TPN)
 Pegfilgrastim (Neulasta)
 Poly-vi-sol
 Potassium Chloride
 Polyethylene Glycol (Miralax)
 Prednisone
 Ranitidine
 Ribivirin
 Tryptophan
 Ursodiol
 Vinblastine
 Vancomycin
 Vecuronium
 Voriconazole

That's almost as bad as the ingredients list on a bag of Cheetos!

I've had a number of people calling me asking if they can help with a fund-raiser or something. We are grateful and ask for a rain check right now. We found sort of a loop hole in the Denali Kid Care program which defines someone as Disabled if they are in-patient in a hospital for 30 days. If he qualified as disabled he immediately qualifies regardless of income or assets. Henry has had several 30+ day stays in-patient. If this qualifies us then Denali Kid Care will cover the remainder of the Bone Marrow Transplant (not covered by insurance). The other program we applied for is called TEFRA. If Henry gets denied coverage under Denali Kid Care we are told there is a good chance he will qualify for TEFRA which also will cover the expenses not covered by the insurance. Without any complications we are looking at about $250,000 - $350,000 not covered by the insurance.

We are waiting until we hear back about these 2 applications before going forward with any fund-raising decisions. Oddly enough if we don't do things just right, fund raising could disqualify us from both of the programs. So we are treading lightly and waiting. My work has been more than understanding and continues to pay us wages. I voiced concern about not earning the income I was receiving. I was quickly told not to worry, they would get the work out of me later. :) I guess what I am saying is financially we are doing alright at this time.

For those of you who have money burning a hole in your pocket I can suggest the Ronald McDonald House Charity. http://www.rmhcseattle.org/ which has been the greatest thing for us and keeping our family together. Hotels around here cost about $120+ per night (and those are the cheap ones) They also operate a free shuttle to and from the 2 Hospitals we visit on a daily basis making it even more convenient not needing to rent a car or pay for parking.

That's it for now, I'll try and post more pictures and less words next time.

Routine

Henry is doing well, we've been inpatient for a few days because he's having fevers. It's a routine occurrence when he doesn't have his vinblastine (chemo). For the next two weeks we'll be getting no chemo so that his body is ready for the transplant regiment. He has always responded well to the vinblastine but it just wasn't doing enough quick enough and his poor bones couldn't handle any more steroid blasts, they are already so brittle.
We have one more week of classes and meetings and then the next week we start chemo conditioning for the transplant. I will tell you all now that there are many unpleasant side effects of the chemo and the actual transplant. We hope he won't get many of the side effects but we have to expect or prepare for them all.
Hopefully we'll be able to get out of here tomorrow, as long as he can keep the fevers to a minimum. He's getting so strong. We have a little booster seat that he sits in.. you remember the yellow king chair he sat in.. well we have that again and we do sit down stand up exercises every day. He is actually pretty strong, doesn't need a ton of help standing up, but can't stand for very long. But I am trying to be very vigilant in strengthening exercises so that he doesn't lose ground being inpatient for so long. Once he starts standing up more, his back will start to heal.
Today Henry and Elizabeth got into the little cars here, the little red one pictured a few weeks ago, and drive around the hallways chasing each other. Henry really loves it. Having Elizabeth here is really good for him I think, he wants to follow her and play with her and he loves getting hugs from her. The other day when Elizabeth and I were saying goodbye he actually held out his arms to her, wanting another hug. He doesn't or hasn't done that to anyone, so that tells me he was really glad to have her back. :)
Not much else happening here. I hope that you are all enjoying and celebrating our Independence Day. Special thanks to all the men and women in the military fighting to protect our freedoms! God Bless!

Day at the Park

Elizabeth and I went to the Park with our friends, Christine, Zella and Zack. Elizabeth always wants to have Zella over to play, but they have soo much fun together running and giggling and having tons of fun.

She really tried to go fast, Elizabeth was just a bit too heavy for her to push. I started pushing once, and then Zella fell off... I know what can I say... so Zack, Zella's daddy pushed for a while. They loved it.

Biking together... They both thought the bike was the coolest.. so they shared. aww

Most of our time was spent on the swings. Elizabeth always asks for more under doggies... and they couldn't get high enough. :) Thank goodness for the child built seats. It was so much fun. Hopefully we'll get to play again with them soon.