Sunday, June 28, 2009

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.

Wednesday, June 17, 2009

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!

Monday, June 15, 2009

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!









Saturday, June 13, 2009

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.)