Sunday, November 29, 2009

My Little ball of Fire!

Elizabeth, Henry, Grandpa, Annie and I went down to Magnuson Park today. I went running down by Lake Washington yesterday and found that they had built some new wetland areas, and there were lots of birds and ducks and ponds and it was really beautiful. So I thought it would be really nice to go for a walk down there today, so Henry and Elizabeth could see the ducks. However, upon arrival Elizabeth headed straight for the Lake. She calls it a river, but she remembered wadding in the water with Mommy this summer and was ready to do it again. I had to explain and show her how cold the water was, and she was only allowed to walk a little ways so she wouldn't get water in her boots. She definitely loves playing in the water.
As hard as I tried to keep her dry, she got water in her boots, but didn't seem to mind. She wanted more.


She's so cute and fun! I was really bummed out because the camera batteries died after this picture, and I forgot to bring extras, so we'll have to make another trip to show off the new wetland areas. It was really nice and calm and beautiful. After reading a talk by Pres. Hinckley about Gratitude, I was more aware of the beauty that surrounds us, and the amazing creations that the Lord provides for us. I have thoroughly enjoyed being in Seattle all it's beauty.
We took a long route home in hopes that Elizabeth would fall asleep before we got home, and it worked until we got back to the apartment. She woke up and when I tried to get her back to sleep she screamed and screamed and yelled and kicked and refused to go to sleep. I have decided it's impossible to put her down for a nap when I'M tired and cranky! I was trying to explain to her that it was okay to take a nap, but she said she couldn't because she was a country girl. I'm convinced she's afraid of missing out on something. Most days she doesn't take a nap, simply because I'm too tired to try, or I just don't want to fight with her, I feel like all day long I'm yelling at her for something, and I just want to be a happy Mommy and have fun with her... instead I'm this angry monster that's always on her case. So instead of a nap we do early bed times which I'm totally okay with. She's independent and far too mature for her age anyways, I guess she can go with out naps now that she's 3! hahahaha Oh how I love her, and her crazy reasoning and explanations. She makes life interesting and fun and she is always able to remind me of the important things in life. Earlier I was trying to convince her to get dressed amid screams and tantrums... and trying to remind her of why we take the sacrament each week. We looked at pictures of Jesus and she said, "I miss my Jesus." I said oh yeah, what does Jesus do? She said "He gives me hugs, and holds my hand, and we sing." It was so sweet, and we sang some songs about Jesus and tried to bring the spirit back into our little apartment. Thank goodness for little children and their sweet spirits!

Friday, November 27, 2009

AGAIN?!?!

Henry has decided that it's much more fun to be inpatient during the Holidays. On the 4th of July we were admitted before transplant, then after being discharged he went back inpatient the day before Halloween, and then yesterday he decided to be admitted again. We were scheduled for a blood transplant, but Henry reacted to the blood for some reason. His blood pressure was really high and he spiked a fever, even after getting Tylenol. On top of which they drew a CBC and found that his counts had all drastically dropped. Henry's ANC dropped from 1900 to 420, and all his cell development with in the marrow had dropped to ZERO. Which means that his marrow was no longer producing anything...which said to me the LCH was back and was rampant in his marrow.
I'm not sure why I get so upset when we have to be admitted, maybe it's the lack of control, whatever the reason I always get upset and with his counts being that low I was devastated to say the least. I was completely ready to face another transplant if his counts weren't coming back in, I was not prepared to have the LCH come back so quickly and so strong.
So we spent most of the day up in the HemOnc clinic, getting lasix and meds, before being admitted. Mom and Dad took Elizabeth, who was also upset by being separated from Mommy and Henry, to cook some sort of Thanksgiving dinner. Thank heaven for that, I was NOT going to eat cafeteria food on Thanksgiving!
I do have some good new though... after getting some GCSF, an immunity booster, yesterday his counts recovered to well over 2000. And everything else looks good too. That doesn't mean that the LCH isn't there, but at least his marrow isn't completely shut down. We did have one of our favorite nurses to greet us and she was wonderful and made sure we had everything we usually like! Thanks Megan! And he got to flirt with all his other girl friends. I figure he has spent most of his life with them anyway, so holidays with the family means being inpatient with his 'family' haha.
Elizabeth and Mommy got their flu vaccines today, H1N1 and regular flu shots. Elizabeth watched me get them and said "Mommy you didn't even cry!" Then it was her turn and she screamed so much every one in the hospital knew she was getting the shots. Poor thing needed her Daddy to help her, Mommy just tried with all her might to hold her still. She some how made it through two shots, scared all the kids in line behind us and cried all the way home. We took her to the park to help her feel better and she ended up falling down in the mud and getting soaked, so we went home for a warm bath. Juliann, I thought about sweet little Reece, because the band aids fell off in the tub and she said "mommy they're all better now!" And decided to rip my band aid off, because mine was better too. Silly girl!
Well Henry needs a bath before bed... he's back to his normal self scooting all around the floor and playing with Elizabeth. One night inpatient was enough for him. Although we were inpatient, I do realize how full my life is, how blessed we are every day to have Henry and Elizabeth, and to be together most of the time. We are ever so grateful for the medical staff that looks after Henry and does their best to care for him and help him get better. He looks amazing, and is growing every day... today he's 20 months old!! But more than anything I am grateful to my Savior, for carrying me through this trial, I could not have made it this far, and could not go on with out his strength and love. What a miracle the atonement is in all our lives!

Friday, November 20, 2009

At 'Home'







video


I know we're not actually at home, but this is home for us right now, and like I said in the previous post he's doing really well being at home. Elizabeth loves to play with him, and Henry is beginning to mimic everything Elizabeth does or says. And even when Elizabeth tries to pull him along the floor by his arm, he is eager to hug it out.. make sure she knows he still loves her, even when she's too rough.

Instead of worrying about where mom is now, he just cruises down the hall looking for Elizabeth and something fun to do, he definitely found it today! What a little stinker! But oh so cute, and why is it wonderful and funny when Henry does it and when Elizabeth does it I want to spank her! I know, mommy's got some learning to do... and some patience to acquire. Poor Elizabeth.

Yesterday we went into the clinic to get labs, and the nurse was really congested, we're hoping that she wasn't sick, but Henry is definitely getting more congested and tired, could just be his platelets and blood are low again. The Lord has blessed us all with great health, including Henry and we are very grateful. A few families I have recently met have lost the fight against Histiocitosis and or had huge set backs. They are definitely in our prayers, but it makes me oh so much more grateful for the blessings and miracles in our own lives. We hole up in our apartment and only leave to go on walks, I'm too paranoid to be out and about with Henry still. Thank heaven for the apartment we are in, rather than the smaller hotel size rooms in the other houses.

P.S. Juliann thanks so much for the games, we played the train game and my parents really loved it, and mom and I have been playing scrabble every day! Hope you guys have a great Thanksgiving at home.

Thursday, November 19, 2009

Bit of Good News

Yesterday we met with the Doctors and got some good news, his CMV is at zero again! His counts, while being suppressed by medication for the CMV, are still over 2000. He's still requiring blood and platelets every few days, but now that the CMV is gone he may be able to keep his counts a bit higher. Also we're going to test his steroid levels next week and see if he can get off another medication.
Today seemed like the day he decided to get up and go! Instead of sitting in the living room to play, he started scooting around the halls and into the bathroom, where Elizabeth decided to give him bathroom cleaner, don't worry Mom was watching them. :) He's still hooked up to the backpack with his feeds 24/7 but doesn't stop him, he scoots until it pulls tight and then pulls on the cord to get it closer, and then scoots some more. The other day Elizabeth was jumping on the couches and when she got done Henry kept trying to get us to help him jump on them too! He wants to run around the house with Elizabeth more than anything! Being home has been really really good for him, and he's just getting stronger and happier every day.
I asked the Doctors about the six month waiting period for transplants, and they said if he's looking this good they still won't do the transplant. We're going to keep a close eye on him and the disease, making sure that it doesn't start acting up again.
While I really wanted to be home for Christmas, I don't think we'll be there this year. We are gonna have to wait around and see how his body responds. I love watching Henry discover new things and new ways of communicating. He's almost got "mom" in sign language down, we're still working on it. He's such a happy beautiful boy and I'm so blessed to have both of my wonderful children!!!

Monday, November 16, 2009

Play Time

Not the greatest quality picture, I tried to crop them first but didn't work, and I just didn't care anymore.. have more things to do today. :)

Henry and Elizabeth spend most of their time together playing these days, or watching cartoons together. I tried to put Henry on the floor this morning to play, but he kept pointing at the bedroom wanting Elizabeth to come play with him. Annie and Grandpa got Henry to eat a bowl of cereal, I swear that kid will eat for anyone but Mommy, he doesn't trust me any more because I feed him all the gross medicine. Last night we all knelt down by the bed to say prayers with Elizabeth and I asked Henry to fold his arms and he did! It was so adorable! We are all learning sign language, about ten words a week so we can start communicating with Henry, well actually we're trying to get Henry to talk to us. He still doesn't talk, but he points at what he wants and is starting to make more fun noises. We can't say anything about "going" or "walking" because he'll point at the door and cry until we actually leave. He knows exactly what we are talking about, we just have to figure out what he is talking about.
We have labs and doctor visits at least three times a week, and transfusions every other day, but Henry so loves to be home with Elizabeth. Last night he did fairly well, sleeping through the night is something foreign to him, but he's starting to get better at it. He and Elizabeth were tag teaming me, I would get one back to sleep and lay down and then the other one would start crying so it was an interesting night, but I did get some sleep. I love watching them play together and see Henry really thrive. I really hope we won't be here until next summer, but if that's what the Lord has in store for us, so be it. We have a donor that's a perfect match, so if we need to do the second transplant we're all set. I am still hoping for a miracle, that we won't actually need the second transplant but we shall see.
I started to complain and wonder why we had to be in a situation that separated us as a family, and I started to think about all the families with husbands or wives in the military and in other jobs that separate them for long periods of time. While it may not be what we want, you make it work. And maybe there isn't any other reason than having empathy for someone in a similar situation, and knowing how to serve them. We all miss Daddy TONS!!!! And hope he doesn't get too lonely at home with out us, but I take comfort in knowing that we have been sealed together as a family for eternity. It will be but a small moment, and soon we will be together again.

Saturday, November 14, 2009

Mommy's new hair cut, and Elizabeth trying to smile with her eyes open. Silly girl. Still working on that.
HONK! HONK!


Cuddle time with Grandpa, one of the few times Henry wasn't demanding to be held by mommy. He's slowly adjusting to Grandpa and Granny Annie taking care of him too. Henry and Elizabeth are having issues with sharing mommy right now, and so it's been a very stressful few days! But I think we're finally over the initial adjustment.


video

I just love his face, he knows what he wants and tries very hard to use his adorable looks to get it! Smart boy!

So here's where we stand as of yesterday...Doctors said that the sample size is normal for a baby, and it's a huge bummer that there were histiocytes in the bone marrow. There is usually six month period between transplants, so Henry has until February to get his counts up, and his marrow recovered. We will continue to watch his disease at this point and see what happens. While I dislike waiting, and the idea of being here much longer, I greatly appreciate the sense of an end date. He's doing great today, happy as a clam, just needed some sleep and some blood. So we'll be doing clinic appointments every few days and then transfusions as often as needed. We are hoping that as he gets off the meds that are suppressing his counts, he'll do much better and need fewer transfusions. And every month or so we'll probably do work ups on his marrow and everything else to see what's happening.


Thursday, November 12, 2009

Just a quick note to let every one know about the results of Henry's tests. While his liver functions continue to be normal and electrolytes are good, they did find some histiocytes in his bone marrow. The sample size was too small to get a very good picture, so I'm unsure whether we are now moving toward transplant or if we will wait for another, better biopsy. The Doctors I talked to said there can be hisitocytes in your marrow, but with his history they can't rule out anything. So the test in October had no sign of the disease, this last one did. Friday we'll meet with our Doctors in clinic, cause we got discharged from the hospital tonight... YEAH... So sorry Katie! We're still in a holding pattern waiting for the next step. Henry really needs to get back to bed, I'll post again Friday after talking with the Doc's.

Friday, November 6, 2009

Most Recent Henry!

He has grown up so much! Still got those big baby blues though. And check out those eye lashes and eye brows.
Really likes that panda bear but it sheds a little and he hates having anything stuck to his fingers

This is the fourth PIV, the other three blew, and the PICC line clogged, and finally today in a few hours he'll get another line in his chest. He has so many battle wounds already! When he's really upset he will start to point out all his scars to me and give me the most pathetic face... I think he's already learning to manipulate his mama.
Luckily for the nurses that have to place these IV's, Henry doesn't hold a grudge, so when they are done hurting him he smiles and is nice to them. What a kind hearted boy!
Seriously mom you're making me nauseous with all the pictures!!!

Check out the HAIR on his back and arms!!!!d This is the result of one of Henry's many meds... and yes it should go away eventually, we're not really that hairy. Although he doesn't really need a shirt he has a perma-sweater... hahaha

I love this smile! He is such a cuddle bug, mostly just cuddles mom and his stuffed animals it's great!

Thursday, November 5, 2009

The Good with the Bad


Really funny experience yesterday, I was reading in the last chapters of Moroni when Mormon is giving us words of encouragement; teaching us about faith, hope and charity. One of my new favorite verses is 7:39 "But behold, my beloved brethren, I judge better things of you, for I judge that ye have faith in Christ." Lately I've begun to give up hope that Henry could over come his LCH with the one bone marrow transplant, I know the whole post about doubting nothing... and I'm doubting a bit again!!! This gave me encouragement. I have so enjoyed reading the Book of Mormon this last year, it was much more emotional and inspiring and personal. At the same time I was receiving inspiration and guidance, and encouragement for my own life. And Moroni and Mormon truly saw our day and counseled us with the things they, and the Lord, felt most important for us to know and understand. And that verse helps me when I'm doubting myself and my faith.

Mormon continues to talk about charity and he tells us that if we are meek and lowly of heart and confess the Jesus is the Christ we must have charity, "if ye have not charity ye are nothing." Verse 45 teaches us what charity is, "Charity suffereth long, and is kind, and envieth not, and is not puffed up, seeketh not her own, is not easily provoked, thinketh no evil, and rejoiceth not in iniquity but rejoiceth in the truth, beareth all things, believeth all things, hopeth all things, endureth all things." I thought to myself I could argue that I've suffered long, but not really, and although I try to be kind I'm not always, and I envy those that have healthy children, and I feel puffed up when people complain about being here for a few weeks or months, because I'm so much better for being here longer.. I know makes no sense...I am continually seeking my way, and just going to the ER provokes me! I don't think I rejoice in iniquity and I believe all that I know, I definitely hope for things, and have a hard time bearing all things... all in all I was laughing because.. I'm pretty sure I just checked everything off in the "need to work on" column!!! hahahaha However Mormon continues to give us a hopeful out look, he says, "Wherefore, my beloved brethren, pray unto the Father with all the energy of heart, that ye may be filled with this love, which he hath bestowed upon all who are true followers of his Son, Jesus Christ." So at least I know that while I may not have charity now, I can indeed pray for help in attaining it.

Understanding faith, hope and charity, have helped me handle the things we have faced and it has helped me to renew my hope that Henry will be able to be healed with out the second transplant. I talked with the Doctors yesterday at rounds about our outlook at this point, and while we are doing all the pre-staging for a second transplant we aren't decidedly going to do it. Better to have everything in place in case you do need it. Here is the breakdown of what we have done and what's coming and how they tie into the decisions ahead.

1. ultrasound of his liver and spleen: they both are still large, but stable from the last ultrasound.

2. CT of his head lesions: No new ones, old ones are healing

3. Bone Marrow biopsy: will do tomorrow, looking for any histiocytes or signs of LCH. Also looking to see how much of the donor is still there. Last test showed 15% which can still lead to GvH, so they will rule that out. If there are no histiocytes, no real need for transplant.

4. Darbo: Every two weeks he gets a shot to help boost the red blood cell production. I asked if because his counts weren't strong enough to stop the frequent blood transfusions if that would be a reason to do a transplant and they said no. That is something they would wait out and give his body a chance to rebuild on it's own.

5. Check back with Dr. White about bone density, and the continuation of pemidronate (boniva). His back is definitely stronger, they want to x ray or scan his back to see if it's healing.

We're basically doing a huge "how's Henry's body doing" check up. And then we'll definitely know whether we need the transplant now. On the other hand we go back into waiting mode, waiting for signs of the disease to pop up, or for his body to rebuild. Getting him transfusion independent is the big next thing in my book. His liver and spleen being large and directly related to the marrow's inability to build more cells. However, he is back on medication that suppresses the counts so once he is free and clear from his Bactria's and virus' we'll have a better idea of how his body is doing.

I had hoped that we would be able to leave shortly after Joel to head for home, and while that isn't possible yet, I do feel that it won't be very long. Henry is definitely strong and the Lord is so merciful and kind. I have gained a greater understanding of hope and trust in the Lord and while I still some how find things to complain about I know we are abundantly blessed! And I know that if we seek the Lords will and do what he asks he will bless us with an increase of faith, hope and charity, regardless of how weak we may feel we are. I know this was long and drawn out but there was just so much I wanted to share with everyone. Much love to all our friends and family.