LCH

Well I guess I better update everyone on the status of Kate and her disease. First, I would just like to thank everyone for all of their prayers. I know that our Father in Heaven is listening and has been there for us throughout this whole ordeal. So thank you thank you thank you!!

*** WARNING: THIS IS GOING TO BE LONG. SORRY IF THIS BORES YOU BUT I HAVE SO MANY PEOPLE ASKING FOR AN UPDATE AND THERE ISN'T REALLY A SHORT WAY TO DO THAT.

BACKGROUND ON THE DISEASE
LCH is an extremely rare immune system disorder. Langerhan cells are white blood cells that fight off skin infections. In a normal baby the langerhan cells come to fight off a skin infection and then go away once the infection is gone. In a baby that has this disease the langerhan cells are immature and continue to reproduce more and more of these cells out of control. This is where the tumors occur. This can occur anywhere in the body. However, the most common places are on the bones and in the skin. In infants, usually under the age of two it can get into their major organs such as lungs, GI tract, liver, and spleen which in turn causes the organ to fail which makes this disease extremely scary and life threatening. The treatment that they use is chemotherapy and strong steroids to kill off these immature white bloods cells. The treatment is usually quite successful but it has to be done for a year to make sure they are all gone and the treatment has alot of yucky side effects. The other problem is that it is very common for the problem to come back after treatment has stopped. So not only is this disease so rare that it affects only 1 in every million babies but then the babies that have it are all so different. The disease can range from diaper rash to liver failure! Ya I know you are probably confused cause to be honest I am still sort of confused and I swear all the doctors are as well! Thank heaven for Primary Children's! Our oncologist has dealt with this before and is in contact with the "LCH master" who is a doctor in Texas that has done a billion studies on it and every patient in the USA with this disease practically goes to him.

KATE'S SCENARIO
So here is where Kate falls on the spectrum at this time. We have done a million blood tests, urine tests, x-rayed every single bone in her body, ct-scanned her whole body, and had all the dermatologists and residents in the whole hospital look at her skin. Every single test has come back clean!!! Can I say halifreakinlujah!!!! The LCH problem has only shown up in her lymph nodes and we have already cut out 80% of that so all we are going to do at this time is just watch her like a hawk. The fact that it isn't in any of her serious organs and that it is only in ONE of her "not so scary" organs they are hoping it will just go away on it's own. Every four weeks we will go in and test her again to make sure it isn't showing up anywhere else for the next few years. The doctor's say that the mother is usually the one to catch it. When I am shampooing her hair I am supposed to feel for any bumps or holes in her skull or if anything seems unusual I am supposed to bring her in. The second they spot it in any other spot of her body even if it is just a skin rash (that is biopsied and comes back as LCH) she will start chemo immediately. So you are asking yourself is she just going to live every second wondering in fear if it has spread somewhere else? Every time she gets a tiny bump on her skin does her stomach drop? Every time she spits up a little bit does she panic? Or even better every time she cries does her heart race? Well the answer is yes. BUT I am so thankful. I would way rather have this worry for the next few years than to watch my tiny baby go through chemo and steroid treatment. (The black rings around my eyes is evidence of my stress. I am aging exponentially!) I have just decided every time I start freaking myself out I have to remind myself that it is in the Lord's hands. He knows if it is going to go somewhere else and if it does it will be in His plan and there is nothing I can do about that. Yes, having this kind of an attitude is hard to do but prayer has become one of my best friends lately and hopefully down the road we will look back on this time of our life as a blessing that brought our little family closer together and made us value our lives more. I love my sweet Katherine and I couldn't imagine my life without her. I am so thankful for eternal families and the plan of salvation. Every night as I rock Kate to sleep I sing to her "Families are Forever" getting choked up every time. I know I have said this before but I have such a better perspective on life and I am just so thankful for every minute of every day! I love you all and I can't thank you enough for all you have done for us. Please continue to pray for baby Kate and hopefully we will just continue to test and test test and find nothing!!!! :)

Katherine found her voice!

*Don't mind my ugly voice in the background

Whiplash

So I guess tumors can smell. The results finally came back on Friday from all the tests done on the lymph nodes they removed. Unfortunately it wasn't what the doctors thought. It is actually a tumor and she has what is called Langerhan's Cell Histiosytosis. The reason for the puss and the smell was because the tumor grew so fast her blood supply couldn't keep up with it and part of it was eroding. We will now be meeting with an oncologist next week. We talked to them on the phone and they said most likely we will do intense chemotherapy for six weeks and then maintenance chemo for a year. This type of cancer has a 20-30% chance of coming back so that is why they make you do it for a year. We are just hoping it hasn't spread at all and that it isn't in her bone marrow or any of her major organs. We will be doing alot more tests and finding out all the details in the week to come. Wish us luck as we begin our fight cause we are not backing down! Kate is a tough chick and has a lot to live for so unfortunately her little body will have to go through the ringer the next year but we have faith. Thank you to everyone for all your phone calls and emails. Please continue to pray for our sweet little girl and we will continue to update you.

SISTERS

I have been so worried about getting my yard done this year and I haven't been able to get around to it with Kate and piano and my crazy life. So when I came home from the hospital I was shocked to see my yard all weeded with more dirt, bushes and flowers! My sisters with all their kids spent a whole day at my house and did the whole thing! Granted it is not that big but it would've taken me forever! Sisters are just the BEST! Even though Ty says after all our health scares with Kate we aren't having any more kids .... too bad! Kate has to have a sister! No girl should ever have to live without a sister. I love my sisters and of course my mom so much and I could have never gotten through these past weeks or anything else in my life without them!

more hospital pics.....

She would cause all sorts of problems b/c she was obsessed with putting her toes in her mouth but they had wires, and the oxygen measure things taped to them. Every time she would get it in her mouth or kick her legs the alarm would go off that she wasn't getting enough oxygen! She is a nut head!

Gratitude

"Permanent pit in my stomach", "Desperation", "Hope", "Worst Nightmare", "Humility", "Faith", "Tumor", "Neck Mass", "Outpouring of Love", "No more tears left". All of these titles could work for this post but none of them do justice for what we have been through the past week! I am writing this on my laptop, from the comfort of our hospital room, as Kate snoozes in her metal bar, jail style hospital crib. Here's our story... last week I took Katherine in to the pediatrician to have him look at the lump on her neck after she had finished her cycle of antibiotic. At that doctor appointment is when a very big pit made it's way into my stomach and never left. The pediatrician was really concerned because the mass was still there and was still quite large.

So, from there our doctor sent us up to Primary Children's Hospital for another ultrasound. As the radiologist was looking at the results of the ultrasound he seemed very concerned. It looked like the lymph nodes were calcifying which is never a good sign. We were then rushed into another room where we prepared to have a CT scan of her head. But then we had to wait becuase she couldn't eat for over 6 hrs. Do you know what it is like to starve a 4 mo. old? She would just look at me and cry. Just before the CT scan Kate needed to get an IV so that they could put some contrast into her blood. The nurses tried both her hands, but they couldn't get the IV to work... so they put it in a vein in the MIDDLE of her HEAD!! Needless to say, Ty and I were freaking out! Kate was so brave. She cried while getting the IV, but as they scanned her head she just layed on the table, strapped in, sucking feverishly on her binki, trying so hard to hold it together. At this point the radiologist pulled me aside and told me all signs were pointing toward nuero-blastoma cancer. They wanted to get my permission to scan the rest of her body to look for more tumors. We were so scared! The pit in my stomach got much larger at this point! Now I felt like someone had punched me in the stomach and I could barely breathe. Fortunately there were no other tumors throughout her body. At this point they felt confident that it was indeed a tumor in her neck but they wouldn't be able to tell what kind until they opened her up. They decided to schedule a Surgery where they would try to get as much out as possible. It was located next to her shoulder nerve so they had to be extra careful. The surgeon said he would get as much as possible but most likely we would be doing chemotherapy and radiation to get the rest of the cells out if it was malignant. Our pediatrician then got us in touch with an oncologist who would be in the surgery so that if it was indeed malignant we could go ahead and get a bone marrow sample of her hip while she was under anesthesia. I never thought I could cry so much! I literally didn't get out of fetal position for hours, sobbing.

The surgery was scheduled for Friday at 11am. I prayed and cried more than I ever had before. The pit in my stomach grew and I couldn't eat, sleep or think about anything but my precious Katherine. That morning as we were reading her books and she was talking, cooing, smiling, and giggling all I could do was cry knowing what we were going to be doing to her in just a few hours!

As we drove to the hospital for surgery, I sat in the back with Kate and bawled. Kate, on the other hand, laughed and smiled the entire drive. The picture above was taken on the way to the hospital.

Once we were at Primary Children's, Kate had to change into these funny, hospital-issued, baby blue smurf pajamas. The surgeon said that once he cut her open he would cut a small piece of the tumor out and do what they call a "flash freeze" which would tell them immediately if it was malignant or benign. At that point they would send the oncologist out to let us know the result. The whole surgery was only supposed to last for 45 minutes and someone would come and update us as soon as they knew anything about what it was inside her neck. We walked to the anesthesia area where a doctor told us about how they were going to get her to sleep... I then had to watch as a doctor took my 4-month baby girl through a swinging door to an operating room. I was heartbroken. I felt helpless. I once again sobbed.

Well two HOURS later (remember it was only supposed to be 45 minutes and they were supposed to come out and tell me within 5 min.) the surgeon FINALLY came into the waiting room. I literally thought I was going to crawl out of my skin waiting!!! Every time I saw a person walk into the room my stomach would drop yet again! But what the surgeon said makes me cry right now as I am typing this. They were wrong! It was a strange infection in her lymph node and not even a tumor at all!!!!! It is a mystery to all of the doctors because it did not look like that in any of the tests. They had never seen lymph nodes this large! But he said that the moment he made the incision he knew it was an infection b/c the smell was so outrageous. He said it made his eyes water! Tumors don't stink- infections do. They ended up cutting out around four or five lymph nodes along with alot of puss and drain out most of it. Once they did the "flash freeze" and verified it was not a tumor they stopped though b/c medicine can heal it and they didn't want to go any further putting her nerves in danger. So now we are just waiting for the cultures (sp?) to come back and find out what type of infection it is and what antibiotic would treat it best. There is always a chance that it is a fungal infection as well which is a little harder to treat but nothing like cancer. I can't even explain the relief we felt! I went running into the post op room to my screaming HUNGRY baby and just bawled as I fed her. I want to thank everyone for all their love and support throughout this week! Our family and friends are the best and it is so nice to know how many people love our sweet Katherine and had her in their prayers! I also want to publicly thank my Heavenly Father for sparing us at this time. We met another family in the waiting room whose six month old baby didn't have as good of an outcome as we did and I can't express the heartache I feel for them. I have a completely new perspective of prayer, fasting, the plan of salvation, and most of all life. All the stupid concerns I worry about all day wasting the precious minutes we have here on earth. I will forever try to cherish every second I have with Katherine and all of my loved ones! (I will post more pics later. Internet has decided to not cooperate.)

Enough Already!

Is there anyway I could just put a pause on the bad events that continue to rush my way? I am not even asking that they stop but just pause while I catch my breath!

Are you asking yourself what in the world I am talking about? Well a million stressful things are going on in our life right now and just to top it off my sweet Katherine woke up from a 30 minute nap with the right side of her neck swollen hard about the size of a golf ball. She didn't act like anything was wrong as she smiled and laughed at her mom who was freaking out. I immediately called the on- call doctor (it was Saturday) and it happened to be my pediatrician and wanted to see her asap. So I brought her in and his response was that he wasn't really sure what it was. He initially thought it was a hematoma (bruise) and began to take her pjs off to see if she had any other signs of being abused. Then he checked everything else (ears, temp, all her vital signs) and found no other symptoms. He decided he wanted to get a CT scan to find out for sure what it was. However, it happened to be Sat. of a holiday weekend and he didn't feel comfortable (with her being only 4 mo. old) getting a cat scan from the weekend/holiday crew at Primary Children's Hospital. He wanted me to wait until Tuesday when there would be a full tech team and radiologist to conduct her "study". He seemed extremely concerned! Can I just say patience has never been one of my strong suits and that was the longest two days of my life! Well to make a long story short, the radiologists decided to do an ultrasound first to be on the safer side and found that it was most likely a strange infection in her lymph nodes. So for now we have her on an antibiotic hoping it will fix the lump on her neck but if it doesn't we will have to biopsy it and check for cancer. The concerning aspect is that they are not tender at all. She acts like she doesn't even know it is there. But she is going on her fourth day of the antibiotic and I think the swelling is starting to go down a little bit. It is hard to tell since I look at it about every two minutes but I am feeling a little bit better about it now. Here are a few pictures but they really don't do justice showing the actual size.

Have I mentioned how much I love her? Despite all this she is laughing and talking and smiling making everyday amazing no matter how tired I am !

Happy Mother's Day!

Well mother's day has definitely taken on a whole new meaning. My whole life I have wanted to be a mom! I have spent millions of hours taking care of other people's children but there is nothing like actually being a mother. I love going in Katherine's room in the morning to see her get so excited to see me or lay on the floor with her and have her talk her little language to me or give her a bath and watch her splash all over the place. I could go on and on but what I am trying to say is I feel so grateful for the opportunity to be a mom and I am glad we get a whole day to contemplate how special motherhood is. It was such a great day (other than Ty having the flu): the speakers in church started the day off by making a beautiful tribute to mother's, then we went with Ty's family and had a picnic up at the cemetery at Ty's grandma's grave, and then finished the night at my parent's house. I just want to say thank you to my mom and and ty's mom for being such fabulous mother's. I hope I can be as good of a mother as they have been.Look how BIG my baby is getting!

This is the only smile I can get on camera.

Better Late than Never?

I know it has been awhile since Easter but I figure I should still blog about it now since I have a minute. We had a really fun Easter egg hunt at Ty's parents house the week before Easter and Kate got alot of candy and money that her Mom and Dad of course stole. She also got the movie Pinnochio- our first Disney movie other than Baby Einstein (and of course her mom's favorite: HSM 3).

Kate and her darling cousins! She loves to eat her fist!On the Saturday before Easter my whole family did a 5k for diabetes up at the U. It was freezing!!! After that we went and got in the hot tub at the Ivory's, had another big easter egg hunt and ate alot of food! It was really fun!

Kate getting ready for the race!

We all look a little scary having just rolled out of bed!

These three were the fast runners. Me Kate and my mom definitely were the slow ones but it was still a fun race and a great cause.

HE'S BACK!!!!

I know you all have been missing seeing Ty on Channel 2 News every night..... but GOOD NEWS. If you hadn't noticed, heard or read it in the Tribune, Ty got laid off about 5 weeks ago in a big round of layoffs due to economy. But guess what?!!! He's back on the airwaves ladies and gentleman! Unfortunately not at channel 2 where he had some of the greatest friends he could ever ask for but now he will be reporting for channel 4 here in Salt Lake. So everyone change the channel and tune in tonight for his first time on ABC!