Wednesday, June 30, 2010

Ethan's ITP Story Part 3....

In walks a man whose hair is a mess, looks like it hasn’t ever met a comb before. His button up shirt is buttoned wrong and half of it is hanging out of his pants. This man’s glasses look like they have been stepped on a few times so that one side is bowing way out and the other looks normal. As I examine this man walking into my son’s room I realize that he kinda looks like Dr. Duddy. Just then my heart drops, is this seriously the Doctor that is going to treat my sick son? It’s only 7am, how could anyone look that torn apart already? (Later I would find out why, but that is a different blog!) But there is something about the way this Dr. presents himself that makes me relax a little. He is friendly, outgoing and talks to Ethan like he really cares. He lets me ask questions and gives me answers that make sense. He tells me of the treatment plan and then asks if I have more questions. He hands me his business card on the way out and tells me if I have any questions to call him. After laughing with my mom when he leaves I notice that he is the Director of The Children’s Center for Cancer and Blood Diseases of Las Vegas. I am stunned. This crazy looking man is the Director of a reputable place? Amazing how we can truly never judge a book bases on its cover. We would soon learn that of all the Pediatric Oncologist we were truly blessed to be assigned this one! This day was probably the longest one. They started an IVIG treatment which stands for, “Intravenous immune globulin.” This is basically plasma that helps replenish platelets and other items in our blood. This IVIG treatment took most of the day. They started Ethan off with a little drip at a time for a few hours to see if his body would have a negative reaction and then they started to increase the amount little by little. I tried to take a nap while Ethan was sleeping in my mom’s arms, but it was extremely hard for me to do. Every noise woke me up so after a while I just quit trying. I took a walk to the Labor and Delivery floor to see my co-worker who had just had a baby the day before. Boy was she surprised to see me! Around lunch time a few different people stopped by that I still have not forgotten. The first was people from the Ronald McDonald house. They brought me and my mother a sack lunch that had a sandwich, chips, snack and soda in it. They explained that they did this everyday because a lot of parents don’t have the time or the money to get themselves lunch. I was so overcome with gratitude to these two strangers. How a little sack lunch brightened my day I will never be able to adequately express with words. A little later another lady stopped by and since Ethan was napping I stepped out into the hallway with her. She was from a Children’s Cancer foundation that was all about support. She told me of little bracelets they had for the kids and little charms they could get each time they had a chemo treatment, IV or other things like that. She was so thoughtful and apologetic about our situation. Her care at that time was something that was also greatly appreciated. After my mom and I ate lunch Aunt Anjali came to the hospital to visit and see if there was anything she could do. After much prodding from my mother, I went home with Anjali for a few hours to get some sleep. I know, some of you might think me crazy for leaving my son; however two factors contributed to why I felt ok to leave my son. #1, my lack of sleep was making me crazy. It had been nearly 36 hours since I had slept. I could hardly think straight and bright lights were starting to hurt my eyes and #2, what more capable hands to leave my son in then my mother’s? After about a two or three hour nap Anjali brought me back to the hospital. Ethan had taken a good nap while I was gone and I felt 100% better and more like myself. After school was finished Chris came out to the hospital and pretty soon so did Grandpa Blackburn, Grandma and Grandpa Nelson, Aunt Anna and Uncle Enrique. Ethan’s room was like a party.
Everyone including Ethan was laughing and joking around. Even Ethan’s nurse from when we first got to that floor stopped by just to say hi and see how Ethan was doing. He gave her a few smiles and she agreed with us that he was doing much better! The nurses told us that once the IVIG was done they would do another blood draw and platelet check, if his numbers had gone up the Dr. had ok’d us to go home that night. With this hope in sight my anticipation of getting Ethan home that night grew by the minute. Aunt Anna took Ethan out in the hall and sat him in a little hummer they had, he of course loved this.
This particular floor of the hospital was not crazy about visiting hours, but when they came to draw Ethan’s blood everyone ended up in the hallway and so they decided to say their good-byes then. We waited quite a while for the results of that blood draw, apparently the lab was really busy at 9pm. Ethan was asleep in my arms when they came and told us that Ethan’s platelets had increased which meant that the treatment had worked, and that it wasn’t leukemia. Oh the joy that swelled within my heart the moment they told me that. Somehow hearing that made a dim light appear at the end of a very dark and scary tunnel.
Chris took Ethan so I could go check us out. Because it was so late I got sent on a wild goose chase, but eventually found my way to the emergency room and to the financial lady who would check us out. This lady tried to get me to pay the full amount of our bill, which was crazy high; I politely smiled and told her that they could bill us after our insurance had paid their part. I quickly went back upstairs and got everything ready to go. We walked by the nurses’ station before we left and thanked them all. Ethan was in his car seat wide awake and smiling. I didn't realize it then, but now I can only imagine the joy they must have felt to see one of their patients leave with a smile. We told them we hoped to never see them again; I gave a hug or two and then our little overjoyed family made our way home! We had only been away from our home for a little over 24 hours but I have never been so overjoyed to lay my baby in his crib as I was that night! It’s amazing what has to happen in our lives in order for us to REALLY appreciate the small things that matter so much!

Oh and did I tell you that this is where Ethan officially learned how to crawl? Pretty great accomplishment considering he had an IV in his arm! Ethan has always been my tough guy!

Wednesday, June 23, 2010

Ethan's ITP Story Part 2....

We arrived at the hospital around 10:30pm, checked in and took a seat in the waiting room. A crazy family sat across from us. From what I got out of their yelling and arguing, the teenage daughter had been jumped while she was at some friend’s house and so the WHOLE family decided they needed to come with her. When I say WHOLE family I mean 2 or 3 mom’s a dad and about 8 other kids. I seriously think they were a polygamist family. The teenage daughter had a gigantic attitude and even ended up throwing her ice pack in our direction and almost hit Ethan while he was sleeping in my arms. I stood up to grab the ice pack and throw it back at her and decided to take the high road and just stared her and her WHOLE family down until we were called back to get Ethan’s stats. Ethan was such a good baby, it was amazing. He sat on my lap the whole time and didn’t cry once. They decided to give us a room which I was grateful for since there was a crazy family in the lobby. When we got back to the room they informed us that only two adults could be back there, so my mother sat in the lobby for a while. We shut off the lights in the room and tried to get Ethan back to sleep, which was not very successful since they moved the crazy family into the room next to ours. (Apparently the rules were different for that family because there were like 4 adults and kids in that room) The times get a little fuzzy to me while we were in the ER but I think they are pretty close. Around midnight or 12:30am Dr. Duddy (our Pediatrician) called. He said he was up with his daughter and wanted to check on us and make sure everything was going okay. I could not believe that our Dr. had called us at midnight… How important that made us feel, we really do have the best pediatrician ever! I think at some point Chris took my mom home since she couldn’t be back with us anyway. Around 2am a Dr. came in to see us and really did nothing for us. He said they were going to draw more blood and get an IV put in. After he left a few nurses came in to draw blood and attempt to get an IV set up. It took over an hour to get the IV to stick. They started with his arm and poked him about 5-6 different times including his feet, wiggling and twisting most of the pokes. Our poor boy did not enjoy this at all and neither did his parents. Chris was eventually put in charge of turning on and off the lights. They tried to use a flashlight to shine through his skin and find a vein. I don’t know if this technique ever works, but it certainly did not for them that night. I held Ethan and sang to him the whole time, and amazingly held it together the entire time! Finally the nurses decided to call in an expert after trying for an hour to no avail. The nurse came from the Pediatric Oncology floor and got the IV started in Ethan’s arm in one poke and about 5 minutes. Amazing what a difference it makes when you get someone that knows what they are doing. Once we got Ethan calmed down I was able to get him to sleep in my arms again around 3:30am. Chris and I pushed around the idea of Chris going home to get some sleep before school the next day. We finally decided that once they put us in a real room he would go home and I’d call my mom in the morning to come back out. Around 4am they had a room ready for us and wheeled Ethan and I up on the bed to the fourth floor. They got us to the room and I laid Ethan in the “prison” crib while the new nurse talked to me. She informed me that we were on the Pediatric Oncology floor. (Side note: I held my composure pretty well and only cried slightly when the nurse told me we were on the Oncology floor! It hit me hard that my son was that sick, this floor title just didn’t give me any comfort what so ever. Considering how bad I was at home, I’d say I did pretty good!) She also showed me around the floor, there was a family lunchroom with a free soda machine and a fridge stocked with food. There was also a family visiting/play room that was full of toys, books and tvs. While walking around the floor I noticed that there were about 4 nurses and probably only 3-5 rooms taken, including ours. I wish I remembered the nurse’s name because she was a sense of comfort to me. She spoke with love and concern in her voice, she asked me if I had any questions and if I needed anything. She smiled with true compassion and being in her presence game me a new sense of courage that this young mother needed at that time in her life. She explained to me that Dr. Bernstein would be in to see us in the morning, that he usually came in around 7 or 8 and then they would decide the treatment or our options from there. She set my bed up and told me to get some sleep. As tired as I was, I was not able to sleep much. The floor was stone silent and I think that made me a little nervous. At least in the ER there was constant noise, things going on and other things to focus on, here in this silent room there was only a sick little boy to focus on. Finally around 6:30am I called my mom and asked her to come back out to be with us. She was there in no time flat and by that time Ethan was up. Luckily Dr. Duddy had instructed Chris to pack a big bag of toys for Ethan and snacks for Mommy to take to the hospital. Because of the IV Ethan was limited as to where he could go. He was confined to his “prison” or someone’s arms. Dr. Duddy called us again around 7, he asked how everything was going and when I told him that Dr. Bernstein was assigned to us, he said, “Oh that is great, he is a great Dr. He looks a lot like me, except I’m more handsome!” He then game me a list of questions to ask Dr. Bernstein and told me he would be calling later in the day to check on us again. One thing I love about Dr. Duddy is he realizes how stressful this situation is for Ethan and his parents. He always asked how Ethan and I are doing!!! When I got off the phone I felt a new sense of encouragement and hope…. And then Dr. Bernstein walked in………………….

Monday, June 21, 2010

Ethan's ITP Story Part 1....

I remember my mom calling me at work and telling me that Ethan had his first official black eye and she felt like the worst grandma ever. He was almost eight months old and I just smiled. “What did that crazy kid do this time?” I asked her. Apparently he had been in his walker and leaned down to pick up a toy from the ground and bonked his head on the walker tray. That night when I picked him up it wasn’t that bad and we honestly thought nothing of it. We did notice that week how he was getting quite a few bruises all over the place, but he was a pretty crazy and active boy. Finally he started to get a weird “rash” of sorts. It was not on the skin but seemed to be under the skin and was purple. My mother started to get a little worried about it and was thinking it could be the measles. Being the kind of mother I am my only response to her was, “The kid is crazy, he has no other symptoms, no fever, no cough, I’m sure he is fine.” But then that day at work I started looking up different rashes and came across the perfect picture of Ethan’s rash. I found out that these spots or rash was purpura. Basically what that is is blood from blood cells that have burst that make it to the skin. We all have blood cells that burst, however normally our platelets heal them in time before the blood gets to the layer of skin. I did what uneducated parents should never do; I followed a few different links and freaked myself out enough that I called the Dr. right away and made an appointment for that night. I made Chris go with me to this Dr. Appointment and can still remember the drive out there. I was worried that they were going to take one look at Ethan and think we were abusive parents. I was convinced they would never believe us when we told them how crazy Ethan was and that he got all those bruises by himself. There was a huge tire fire just off the side of the freeway and it was backing up traffic. We talked about the fire for a while and continued on to the Dr. Dr. Duddy came into the office and took a good look at Ethan and then said, “These marks are called purpura.” And then he explained to us what it was. He referred us to get blood drawn and gave us a “stat” order. We were one of his last patients which put us in a tough position to get Ethan’s blood drawn that night. Our insurance of course only allowed us to use LabCorp and the one next to the office was already closed. The Dr. gave us his most current list of LabCorp offices and hours, we found the one that was still open and headed about 20 minutes away to it. We pulled up and noticed that the office was closed. I would like to say I was not panicked and was nice and calm but I can’t. I was irate that this location said it was opened late, however it was closed. I was frustrated that we weren’t going to get this blood work done and that we wouldn’t know what was wrong with Ethan. Fortunately Chris was with me and was ever so calm. He suggested we call some of the offices until we found one that was still opened. We did this and found one which was only about 5 minutes away and was still open. We rushed over there just in time to be the last patient of the day. Although the word “Stat” was highlighted on our paperwork I pointed it out to the lady behind the desk as well. Finally it was our turn to get blood drawn and Ethan did a pretty good job, for only being 8 months old. After this we headed home to eat and get Ethan to bed. By the time we got the blood drawn it was after 6 and Ethan’s bed time was 7. From the moment we got home I carried my phone around with me waiting for the Dr. to call. He said he would call us when he got the results and I was anxiously awaiting them. If I went upstairs so did my phone. Finally around 9pm I decided that no news was good news and that the Dr. would probably not be calling us that night. I told Chris goodnight and headed upstairs. I brushed my teeth, got in my PJs and picked up my phone to go to bed and it rang. I didn’t notice the number and got a little panicked by that. “Hello” I said with a forced smile. “Hi Hilary, This is Dr. Duddy. I have Ethan’s test results… Can you put your husband on the phone as well.” Immediently my heart sank and I started crying. He hadn’t even given me any news and here I was crying. I practically ran down the stairs and threw the phone at Chris, “It’s Dr. Duddy!” I said fighting back tears from Chris and then I headed to the top of the stairs and curled up. My heart was pounding as I heard a one sided conversation that sounded a lot like, “Okay, yes we can do that.” “No that shouldn’t be a problem.” “ahuh” “Okay” “How long” “If that is what we need to do” “They will be expecting us?” With each new sentence more fear entered into my body and more tears streamed down my face. I heard Chris say good-bye and I braced myself. Chris came over to the stairs and calmly walked up them and sat next to me. He told me that Ethan’s platelets were seriously low, the normal is 150,000-450,000 and Ethan’s were around 3,000. It could be a bad reading, because platelets stick together, however because they were so low the Dr. wanted us to take Ethan to Sunrise Children’s Hospital, where they already had all our information and would be waiting for us. He then told me that Dr. Duddy had given him different scenarios and the worse case scenario, just so we would not be shocked by it, this scenario being Leukemia. The hospital would run a few tests and maybe do a bone marrow draw to determine exactly what it is. There is a lot more that Dr. Duddy told him that I must have chosen to forget, but after he was done talking I told him, “No, we aren’t going to the hospital, my son is sleeping and there is nothing wrong with him. Look at him, he’s sleeping just fine, he’s fine!” Even when I said the words I knew we would be going to the hospital because I knew there was something wrong with my son and the only real way to protect my son was to go to the hospital. We called my parents to come over and give Ethan a blessing before we went to the hospital. I dialed their number and said hello and then had to pass the phone over to Chris again because I couldn’t speak. My parents were there in no time, how grateful I am that my husband and Dad were able to give Ethan a blessing and then I got one too. In my blessing Chris said that all would be well and I’d be able to handle all that was presented to me. With that my dad headed home and Chris, Ethan, my mom and I headed to the hospital. Chris hugged me more than once and told me everything would be fine more than once. I held tight to his hope for the entire next year….

Wednesday, June 9, 2010

Random Thoughts.....

I did a lot of thinking while I was driving around today and I thought I'd share some of them with you, but most of all with my kids when they are old enough to read.
1. On my way to work I was listening to some Meat Loaf and heard a profound quote. "We'll never be as young as we are right now!" I often complain that my body hurts. I complain that I'm getting old too fast and these words struck me in a few different ways! I get so wrapped up in wishing for tomorrow, the weekend, next month, next year, Chris to finish school or some other point in the future. How important it is for me to focus on the "Right Now" part of my life and my kids' life! Tomorrow when I wake up my kids will be a day older and so will I, we will never get younger. My mother gave me a framed quote for Christmas one year that said, "Little boys should never be sent to bed, they only wake up a day older!" Each day my kids do something new that reminds me that they are growing up. As I look at them sleeping in their beds I notice that pretty soon Ethan is going to need a bigger bed. He is getting close to hanging off the end. I notice that Katelee looks so big in her little crib and then I remember when both Katelee and Ethan were so small they looked lost in that same crib. Chris always laughs at me when I say I'm getting old. When you are young you never think that little things like aches and pains will stop you from doing stuff, but boy they do. I know, I'm not that old, Chris will always be 5 years older than me, but I guess I just never thought I would change. I guess I thought I'd always be able to go run and be pain free, or be able to kneel down and not have any problem getting back up! Silly me. How I need to learn to embrace each day, be grateful I have the health I have, be grateful that my kids can do the things I once could and now can't! So I'm going to live it up today because tomorrow I'm only going to be older!

2. I saw a really nice Corvette yesterday and it had this on it's license plate, "IDODIVC" What a city we live...What a world we live in. Here this man makes tons of money from people who's lives are torn apart. He makes his money from heartache and here he is publishing it to the world. Bragging to the world that because he is a divorce attorney he is driving a brand new Corvette. I wanted to hit him. But I took the higher, much cheaper road :). I only vented in my head about how sad it was that this man had so much money because so many people are hurting and get divorces. In today's world so many people are affected by divorces. Not only the husband and wife, but the kids and eventually their posterity...... That is all for this one!

3. I got to stay home with my kids and baby Emily on Monday and I loved it! It was tough, of course, but I really enjoyed spending so much time with my kids and niece. When I went back to work Tuesday I was really thinking I would have a great day because Monday was so busy, however after reading only 20 e-mails from the day I missed I was ready to stay at home FOREVER with my kids. I have always enjoyed my job and most days I still do, but I so enjoyed my time at home with the kids on Monday!

4. Tuesday was Primary Election day. Chris and I went up to Vegas High School after work to vote. I was very disappointed at how few of people there were there! I realize that many people early vote however when I got on the Secretary of States website and noticed that only 30% of registered voters in the state of Nevada came out to vote I was livid! My problem with people that don't vote is this: They are always the first to complain about whoever won or what that person is doing! (or so it seems) If you vote I feel you have a little more room to complain because you "tried" to solve a problem. I had a co-worker say to me on Wednesday, "I bet you didn't even vote." to which I replied, "Did you seriously just say that to me? As a woman and a Mormon we had to fight to get the right to vote, it is my duty to vote!" This man just stared at me with big eyes. This is probably because I am not a forceful person at work. I will give my opinion when asked it, however I never throw out my thoughts on things if they are not welcomed. I feel kinda silly pulling the "Woman" card but I actually did! Plus this guy is a Really Really Really Far Left Democrat that believes everything negative and pushes his opinion on everyone! Needless to say I have strong feelings toward voting and it being our duty as citizens to do so! I do not mean to offend anyone that did not vote, however I would ask that you think about it next time............. And vote for Jerry Wiese, Judge, Dept 30! :)

5. Chris started his first clinical this Monday. His schedule is 7:30am-4pm. It has been quite a production making sure the Clinician received everything that they needed. Chris had to go get a few shots and different other items all while watching the kids. He did a great job managing it all! So far only 4 days into the clinical he is still enjoying it, which is a good thing! Chris has been getting up early for about a month now so he can shower, get dressed and ready his scriptures. He did this pretty much the whole time he was off of school which I think is amazing. Any chance I get to sleep in, I take it! He even gets up early on Saturdays!

6. The other day Chris was told he needed to start eating a little healthier for his cholesterol and something else. So he purchased some frozen fish fillets. He informed me that he was going to be making dinner one night, bar-b-que fish and potatoes. I prepped myself that whole day to eat fish, which I hate! So we sat down for dinner, I got the kids' potato ready and got them going and tried my fish. It was actually quite delicious. Chris had found a recipe for a rub and that made all the difference. (I think the prep talk had worked as well!)

7. The other day I received some disheartening news about girl that I had the opportunity of getting to know better from being in YW. It hit me pretty hard that night and even effected my sleep a bit. The next morning while getting ready for church I had the thought that these girls need to realize and be told how important they are and how special they are. So for YW that day, Sister Nelson gave the "thought" instead of one of the girls. I told them how they should never settle for anything less than what they deserve and told them how much I enjoyed and love them. Before I received the calling to YW I was pretty unsympathetic. If they messed up it was their fault, it was their responsibility to fix it. Although ultimately it is still "their" responsibility I feel a lot more responsibility to help show them how they can fix it and how they can prevent it! This has been a true blessing in my life. This lesson has opened my eyes to opportunities for me to help someone in need and from doing that has blessed me greatly! I love the YW in our ward as if they were my own daughter, (pretty much!) When they accomplish something I rejoice for them, and when they fail at something my heart sorrows for them. I know these girls are future mothers, leaders and examples and it makes me feel a great responsibility in my calling! I have been given a tremendous opportunity to serve with some AMAZING women who have set wonderful examples for me. These women have become dear friends and true confidants!

8. Lately I have been thinking about going back to school. Chris and I have discussed this and decided that I will go back to school when he is finished with school. I'm excited to go back to school one day but have no idea what I'd major in. My original major was going to be Secondary Education, then it when to Hotel Management, then I changed it to Finance with a minor in Auditing and last it was Accounting. I'm leaning towards to Accounting just because it seems I would be able to do that from home, however I'm not completely convinced that is what I really want to do! Thoughts of being a nurse have passed my mind as well as a Physical Therapist Assistant, Massage Therapy and even lawyer! The lawyer one is a little out there, but I do find the Financial Regulations to be entertaining and would love to educate people on them. My ideal job besides mother would be to stand in front of 100's of people and teach them about something, like Banking Compliance. But I don't even know how you get a job like that.... And how boring does that sound to the rest of the world?

Well that is just a little glimpse of what goes on inside my brain when I'm left with enough time and silence to myself!