Tuesday, June 30, 2009

Moving Along

We had a meeting with SCCA financial counselor where it was explained to us the limits of the insurance. Come to find out the insurance, by contract, only covers transplants up to $250,000. Who knew a typical Bone Marrow Transplant (without any complications) costs between $500,000 to $600,000. We were then told the remainder was our responsibility. She was quite tactful yet I still felt as if she was saying "will you be putting this on your credit card, or would you rather give us your home and everything penny you make for the next decade?" Don't get me wrong, she was doing her job, and she was tactful about the whole thing. We were then given a "how to" book on fundraising. :) Anyone who knows me well, knows how cheap I can be, and how I feel about money. You probably think I went into convulsions or blew my top or something but oddly enough I was calm and peaceful throughout the whole ordeal. In fact I don't even feel stressed about it. One of my favorite poems is Footprints; I wonder if this is one of those rough spots where there are only one set of tracks.

We ironically do not qualify for Denali Kid Care to assist in the cost. Our income level is slightly over the threshold, but we just might qualify for a program called TEFRA. We don't really know how much TEFRA will cover if we qualify but we are hopeful.

Ok, so other than that Henry is doing great. He is playing and laughing and very demanding. He knows when it is time for medicine and points at it. He has started copying grunting noises. I grunt once and he grunts once, I grunt twice and he does also. He has so much personality and attitude. More to come later I'm sure. J.

Saturday, June 20, 2009

Trophy Cup Cakes

Here are some of the MOST WONDERFUL cupcakes ever!!!!! Strawberry shortcake, chocolate carmel, chocolate peanut butter, and triple coconut! They were incredible!!!!!! We ate them at Johnny Rockets while Joel had a strawberry malt milkshake. (Double Malt....his stomach was not happy after he finished!)
We shared them around, but I definately was in heaven after eating that coconut cupcake! Not only did we get wonderful cupcakes tonight, we went to Zao noodles, and they had my all time favorite vietnamese noodle salad dish. I've been trying to find a place that made it in AK forever after our favorite Resaurant went out of business. So I was elated tonight! Wonderful day! Topped with the fact that Henry was discharged this afternoon it was a great day!

Fun Times

Enjoying shakes at Johnny Rockets. I got the Butterfinger and Laci got the chocolate peanutbutter, Reeses in liquid form. :) So wonderful.
After shopping at Victoria's Secret Semi annual Sale.. yeah it was great! ... we went to get burgers and a shake.

Play time in the hospital. Henry loves to throw toys over the edge, and we're supposed to catch them and give them back. He's so quick that when you bend over to get the first ball he's throwing the second one on you're head. But he was happy! I'm busy reading his lab results. Henry is sooo excited to have Daddy here.

We're playing, possibly cheating, Skipbo. Laci and Joel tore it up, I only won once. But that's alright I was so excited to have company and some one else to play games with. You can see Henry in the back ground kicking his legs and making tons of fun noises.

Bone Marrow Transplant

So some of you may have heard that the bone marrow transplant is definitely going to happen. We had hoped that he wouldn't need it, however, the two rounds of cytarabine and cladrabine... two heavy chemo's, didn't work. So we have to do the bone marrow transplant. As scary as that may seem I want you all to know that I am at peace with the decision. We were in the Doctor's office and there were about four nurses and the Doctor, trying to hook Henry up to the IV pump because he was dehydrated, got a bug of some sort... in the midst of that commotion the Doctor was explaining to me that he needed the bmt or the LCH would eventually kill him. And with all the noise and business going on around me I felt good about the decision. Along with that, there is a bmt Doctor that specializes in LCH transplants; there is a national study going on right now showing very promising results, even curing the LCH in some. After talking to the Doc I looked it up online and found a story of a child same age as Henry who went through the bmt and it cured his LCH. The Lord has flooded my life with tender mercies to let me know that he loves me and is watching over us and that he definately has a plan for Henry. He will get better and if this is what it takes... so be it.
They have found two definite donor matches and one possible, and a few cord blood donors. They prefer the adult donors, so we'll use the donor matches. We will begin meeting with the Bone marrow team on the 29th and then go through evaluations for a few weeks. Starting conditioning, or chemo, on the 13th and hopefully transplant on the 24th of July. After the transplant they will watch him for 100 days, provided there are no complications. However, there are tons of risks and possible side effects to deal with, so it may not be complete smooth sailing. There is even a chance that he won't survive the transplant, but with out it, the LCH will take him. So we move forward with great hope and expectations that Henry will be able to kick the LCH finally. Interesting side note, the donor is out of country, which they say is quite usual, so he'll have some foreign bone marrow.. he may have been born in AK but he's got a bit of everywhere inside him. I am soooo grateful for the technology we have and the advanced medical knowledge we have today. The Lord is so kind and loving!
So if you could continue to keep little Henry in your prayers for a while longer... pray that he'll make it through this bone marrow transplant and that it will be a great success! Sorry I've been slacking on keeping up to date but we were in patient for a while because Henry had a bug for a bit. He's doing better today. As you can see in the pictures, he's happy and handsome.

In Patient

Henry is learning to drive much earlier! Wants to enjoy all of life's pleasures now....:) He's a little concerned about the IV pole slowing him down.
Part of the Father's Day celebration this weekend was a few hours with athlete's..Daddy's sports day or something like that. So here are some of the Seahawk cheerleaders and football players.

He was really liking the girls I think ;) I had to squat down a bit to get everyone into the picture.

The Seattle Mariner's Mascot, Moose...He really liked the moose until I made him sit next to him. However, as soon as he left he only wanted to watch and look at the moose. :)

Tuesday, June 16, 2009

28 Days and Counting

No that isn't the number of days until we come home. Unfortunately. :) It's the number of consecutive days of sunshine here in Seattle, WA! So the reason we have neglected the computer so much lately is because we were outside enjoying as much sun as we could. Two months indoors will make you really appreciate the fresh air and sunshine outdoors.
We met with the Orthopedic Doctor and the Geneticist last week. They explained that Henry has very low bone density, in fact it's the lowest they have ever seen. Kind of like "Unbreakable" the Samuel L. Jackson character.. that breaks a bone when he falls. So it's a good thing that Henry hasn't started walking. However, they also explained that when Henry starts walking, and I should definately encourage him to stand on his own, his poor back will correct itself. So we are working on getting his leg strength up, very carefully.
Every day Henry is becoming more of a little boy. He talks, mumbles and grunts, so much, and loves to throw his toys around. We have so much fun together, laughing and playing. We have some wonderful friends that we've met through the ward here, and they have been taking very good care of us. I was soooo sad last week to see Mandy and Tom leave. Mandy has been such an incredible strength and help to me. We will really miss them.
Elizabeth should be coming soon YEAH!!!! I have missed her so much! I try not to think about it because it physically hurts not having her here. Mom called yesterday and said Elizabeth is getting sick. So we are praying that she gets over it really quickly so she can come visit.
However, today Laci is coming and we are very excited! I'm bumbed because this week we are going to be spending every day in the clinic getting infusions.. So that will stink but hopefully we'll have some fun too. And then Joel will be here... so we'll have quite a full month of visitors, which is really exciting. Makes the time go by so much faster. Although I can't believe it's already been six months!
After everything that has been happening, I fully expect to be here at least until Christmas. We had a period of frustration and right now I feel at peace with that idea. We can be here until Christmas if it means Henry will get better. And if it doesn't work out then, we'll adjust again. The Lord has been so kind and loving to us, and constantly shows us why things work out the way they do, and how much I don't actually understand.. in the big scheme of things.. So I'm grateful that the Lord is watching over and guiding us! We miss you all and Love you tons.
Sorry we don't have any pictures.. our web cam doesn't take very clear pics and Joel has the camera. So until he comes back we'll be pictureless. :)

Monday, June 15, 2009


Its been a while since I posted last, I have been trying to keep myself busy so I don't get too depressed and lonely. I Kayaked for the first time a few weeks ago and fell in love with it. Now I just need to convince my other half. I also finally got a "big toy with big wheels" and Ryan and I have made a few trips with it. Got her stuck a few times but the winch works wonders. Just trying to keep myself busy either working on the house or playing with the Jeep. I call Elizabeth and every day she seems to be getting so much smarter and grown up. Henry even grunts and laughs for me on the web cam. I miss them so much I can't talk very long before I get emotional. So Honey, if you wonder why my conversations are so short you now know why. Can't wait to go visit soon. J.

Friday, June 5, 2009

Pressing Forward

(He just got done saying good bye to daddy on the computer so he was a bit sad. :()

You know when you let yourself hope for too much and then when things turn out less than you had hoped you can't help but feel let down?! Henry rebounded from the two harsh rounds of chemo so well that I was expecting or hoping rather for a great miracle. Hoping that the LCH would be out of his marrow completely. Not the case. However, I will count my blessings...there is significantly less, and there is evidence of new cells being produced.. all great stuff. His spleen and liver were shrinking.. he's a bit stopped up so tummy is a bit bloated. :( There are lesions on his head from the LCH that are getting better and his back is stable. I feel much like Nephi's mother, murmuring for no good reason, lack of trust in the Lord's great plan honestly. I expressed to the Lord that I am willing to be here as long as he sees fit, so I hope as my mother says, that he knows my heart and although I feel like a faithless woman, he'll understand that it's just emotions of frustration and I am still willing to do all that he asks. So many times when I was younger I believed myself to be Nephi, strong and righteous.. when in fact my life turns out to be much more like Laman or Lemuel, now much like Sariah...But I do have to give her credit she was a very good woman, faithful and strong, willing to follow her husband and give up all that they had. And really her murmurings were just concerns for her children... so I understand how she feels and why she would murmur!

Henry is doing well, we are still working on getting him standing, this wonderful walker was donated to us annonymously from someone in our ward here. He loves it, although he can't walk in it yet we are still hopefull. It's heart braking sometimes to see how far behind he is or that he should be doing this or that.. I just keep hoping that he'll get there some day, I can't quite picture it in my mind but I'm hopfull that that day will come when he can run around wild and crazy with his big sister.

So regardless of my maybe depressed sounding post..Henry is doing very well and he is progressing, just at a slower pace than I had hoped. We are meeting with a Doctor Baker from Minnesota that specializes in bone marrow transplants for LCH patients. Pretty awesome! We're set up to meet with him when Joel comes down at the end of the month but perhaps we will gain greater understanding of the disease, talking with him.

The weather here has been phenominal!!! Everyone that lives here complains because it's too hot, but we were reaching record highs in the 80s and 90s and I was loving every minute of it. Too much of it for a while, but it was definately wonderful to have so much sunshine. Today was a bit cloudy but still 76. Henry and I have to get up early to do our daily run before it gets too hot, not sure how people run in extreme heat, I guess you adjust, but it's become daily routine and Henry loves it.

We have become good friends with some people in our ward, they have a two year old little girl named Zella who plays with Henry every now and then and he loves it! He misses his big sister so much and so she's become the adopted sister. He's so much more interested in the kids around the house, wanting to see them and play with them, I'm hoping that will encourage him to move around more. Only the Lord knows! I'll be grateful that he's not running around everywhere or crawling on all the dirty floors. :)

We love and miss you all, thank you again for your prayers and support. Truly the Lord strengthens and comforts us through others. Much love!