A Somewhat Back to Normal Day!

My nephew got baptized today. I can not believe he is old enough to be baptized. Time goes by so quickly. I hope times goes somewhat quick for the next little while for us too. Abby will be getting baptized when Chase finishes his treatments. That is CRAZY!!! He has got a long road ahead, but hopefully for his sake time will go by fast and he wont remember a lot of it. I hope he remembers the good times and his childhood isn't all memories of hospitals, needles, and medicine.
We had a REALLY good day today. I was able to get out of the house and run some errands. Ashton was home so I got a lot done. I haven't had a phone since about day three in the hospital. Well, sort of. The ear piece broke and so I couldn't hear anyone if they were to call. So there was lots of texting and if there was a phone call it had to be on speaker phone. So today I finally got to go get a new one. Thankfully it is not that old so it was still under warranty. Anyway, back to our good day. Chase took his morning meds in his applesauce. His afternoon one Ashton told him it was candy instead of us crushing and putting it in syrup. He took it like a champ and didn't even say a word. Then tonight I put them in pudding. All three worked like a charm. It is still a little risky though because he is very picky about what he eats. Things he used to eat no matter what he wont even touch so I have to cross my fingers and hope that he will eat at least the first bite I put his meds in. I feel bad tricking him....but it if works without tears I am good with it.
So today may be the first day that I didn't hear him scream once. He had his moments of being a little demanding, but we never had a break down fit today.
He ate really well today also so that made my life better.
All in all a good day. Thank you all for your thoughts and concern. It is so nice to have friends checking in before they head to the store, just to be sure I don't need anything. So far we have been set, especially since Ashton has been home today. But I know there will be days that I will need help. When his counts are low and he has no immunity I will need help during those "I want milk fits" and there in none in the house.
Tomorrow is church and even though Chase wont know that it is Sunday I know he is going to miss nursery. He was to the point where he loved going. He would ask to go and even cry sometimes when we picked him up.
I think Chase is starting to miss Abby. He wanted Mac and Cheese for dinner, but he kept saying he wanted Abby to have some too.
Chase slept AWESOME last night which means so did we. It was nice to finally have a good nights sleep after over a week of not sleeping much.
I know there are many, many special fasts and prayers for Chase. Thanks to all of you for keeping him in your prayers. I know he could not make it through this without them. Heavenly Father is definitely with him comforting him every day. His spirit and determination shows that he has got something pushing him and keeping him happy despite all he has been through.

Life at Home

Chase was so excited to be home. Grandma was there waiting for us and he was so excited. In fact, when he started to see the red cliffs out the car window he said, "Mama, home?" He was so excited when I told him that yes we were almost home. He had a rough night that night because we were in the car for so long that he had lots of meds he had to take before going to bed. He just kept asking for his bed. Once he got in it he was out. The next morning he woke me up and wanted me to go lay in his bed with him. We laid down and he kept pointing out all the cars and pictures in his room. I think he was just so happy to be in his own bed. We had a pretty good day that day. Mostly because I didn't do a thing. I had so many wonderful people come over and clean my house so Chase could come home to a clean environment and by the end of the day it looked like it hadn't been cleaned for weeks. The car didn't even get unpacked until that night when he went to bed.
The next day was a little bit harder. The home health nurse came over and we had to take the needle out of his port and clean it and re-access it so he was not happy about that. He had also had a pretty sleepless night that night so he didn't wake up till 11 and she was there at 11:30 so it wasn't the best way to wake up. Then directly after she left I made him take his meds. This really is our biggest struggle at this point...especially when I am home alone because I have to sit on top of him to get him to take them. I feel like I am just torturing him. Yesterday was quite hard because of trying to get ready for our trip up to SLC again and trying to keep him happy and fed....Needless to say it was a long day. We had to give him more meds once we got here and we had to stay in a hotel (germ city!!!) so I was trying to hard to keep him clean in his little pack and play with all his own blankets and once we gave him his meds he threw up everywhere (lucky the gigi didn't get it). So he ended up sleeping in the bed. Good think mom was prepped for it and I had two extra sets of pj's. He slept really good though once we finally got to bed a little after midnight. I have been giving him I.V. antibiotics since we got home on Tues. The nurse came over and brought all the supplies and gave me a crash course on giving them to him. He has to have them every 8 hours so I would set my alarm for the morning ones and so most of the time he didn't even know I was giving them to him because they were while he was sleeping. So at 11pm, 7am, and 3 pm (which is during his nap). Wish I could give him all his meds that way. When I say they are I.V. I mean I put them right into the port that he had surgery for that is under his skin and basically goes right into his little heart. So even though it is just antibiotics is scares me that I am putting something right into his heart. He was on the antibiotics because he couldn't kick the fevers in the hospital and they wanted us to be able to go home for a few days. I am grateful they sent us home on them though because that first night we were home he had a fever. We called the hospital and they said since he was on the antibiotics that we didn't need to go to the ER but otherwise we would have had to pick up our little boy who had only been home about 2 hours (and was so excited to be there) and head back to a hospital (The last place he would want to be.)
Today we are at our first clinic apt. back up at Primary's. He was not happy to be back and just wanted some milk. (And he can't eat or drink from midnight on when he has to be sedated.) He is a determined little boy. He always has been somewhat, but never this bad. The crappy thing is that they came in and told us it is only going to get worse as the steroids kick in even more. I hope I can handle it, because I am only a week into it and I can tell I am getting close to my limit. He had his blood drawn for labs and they came back saying he needed platelets so that is what we are currently doing. He had a reaction to them before so they first gave him Benadryl. I don't know if it is from screaming for milk for a good 45 mins. or the meds, but he is out. Good thing cuz he now can't have anything to eat or drink for even longer because of the time to give platelets. As soon as he gets finished with the platelets then they will give him his vincristine (Chemo) then sedate him and do his bone marrow, and lumbar puncture. Once that is all finished his only request before he knocked out was milk, and donalds (McDonalds). So I have a feeling we will be heading to McDonalds to get us all some food. There is no way I was eating breakfast in front of him when he couldn't eat so we are all starving.
Abby is having lots of fun with Grandma Debbie. I called her last night and she asked if she could stay till next year? She has no idea what that means, but at least I know it means she doesn't want to come home yet. She also asked me, "Mom, is Chaser getting better?" It broke my heart to hear her concern for her little bro. She has such a tender heart and I know she is going to have a roller coaster life for the next little while, but I can't imagine a little girl being more patient and prepped than Abby. She will have some rough times I am sure, but she loves Chaser so much that I hope she understands even a little of what is going on.
I want to tell you all thanks again for all the prayers, gifts, food, help, the groceries that were brought in (thanks Diane)...etc. It has been like Christmas for Chase. He is now going to think anytime he gets sick that he gets lots and lots of presents. I appreciate all that everyone has done for us. There is a good possibility that they are going to have to put me on some fluids while we are here, because I have dehydrated myself through tears. You are all amazing!!!!!

He decided that if we didn't give him milk then he would just sleep through the platelets. Poor kid!!! He is exhausted!

Yeah....we are going home!!!

So all is good and we will be on our way home in the next couple hours (hopefully). Once we do get there, we absolutely love you all, but Chase's immune system is shot right now (literally it is down to zero). We are more than happy to have you come visit if you would like. For the time being until his immunity gets back up a bit they have told us to keep kids away, at least for a while. Anyone else is welcome to come over as long as there have been no sniffles, coughs, sore throats, etc.... Even seasonal allergies just aren't worth risking our little boys life. So if you have not had any of these within the last TWO WEEKS then we would LOVE to see you. Even if you are feeling better but last week had a cold we just can not risk it. Please do not be offended if we have to turn you away because we will have to ask everyone about their status. With good hand washing and being careful about who comes over hopefully we can avoid any trips to the ER. Anytime Chase gets a fever we can not even give him Tylenol, he has to go straight to the ER. Middle of the night or not we pick up and leave. So as you can see any little bug is a big deal to Chase. He would then be put on IV antibiotics and they would draw blood. This will happen anytime he has a fever. So we LOVE you all and are soooo thankful for all the support you have given us, but just keep these things in mind when coming to visit us. We are excited to be coming home and Chase will be so happy to be in his own bed. Regarding Abby, she wants to stay at my mom's house while we make a quick trip home. I guess she is having lots of fun, but what little kid doesn't at grandma's house. We will be back up to SLC soon enough that she wanted to stay a little bit longer, so we are letting her enjoy the cool weather. Ashton, Chase and I will just come down for a couple days and then we have to be back up here for any appointment Friday morning. It will be a quick trip home, but like I said, I think the drive is worth sleeping in our own beds even if it is just a few nights.

A roller coaster day

Chase had a bit of an up and down day. They were trying to get us out and on our way home today (which I am extremely scared to do so I wasn't pushing it at all). Because of that they started poking and prying at him bright and early this morning. He was not ready to be awake and wasn't happy about it. He first needed platelets so they started infusing them. About 5 min. into it he told me that his bum hurt. I asked him if he wanted his diaper changed and he said yes. So I changed his diaper. While changing I saw one little itty bitty bump in the crevice of his leg/hip area. This little guy is pretty in tune with his body. He knew something wasn't right. About 10 seconds later he started telling me his feet hurt and right after that they broke out in hives. They spread all the way up his body and his ears looked like "hitch" (if you have seen that movie). Poor little boy was in pain from head to toe. He was not itching them but saying he hurt all over. They got some benadryl ordered, but it seemed like forever before it was there and going through his little body. After that subsided we had to do two shots, one in each leg, of some more Chemo. Most of them just go strait into his port, but this one was intermuscular and the nurses said it was much worse than any immunization. I could tell when they gave it to him that this was in fact the case. He was not so happy. He finally got enough of a break to fall asleep for about 20 min. Then they came and woke him up to go have an echo on his heart. This was just for a baseline for future chemo that can effect his heart. The echo was super easy, but because of his rough morning he was not trusting anyone and just cried. They said lets schedule to have one done with him sedated. I was okay with that until they reminded me that we would have to fast before hand. That was torture last time so I tried really hard to calm him down. They ended up getting enough (YEAH!) so we didn't have to do the hole fasting and sedation thing tomorrow. He got back to him room and we had lots of visitors this afternoon; family & friends, docs, and nurses teaching me all I need to know (hopefully I will remember at least half of it). It is a lot to take in. I feel like I am back in hygiene school trying to cram a ton in info into my head except this time it is my child at stake and not just a test score. It makes the listening a little more intense. He did have another fever around 3:00 so we will probably not be going home till at least 3 tomorrow unless we have another one before that time. He is now exhausted and SOOOO ready for bed. He has been walking around this afternoon because they took him off of his IV fluids so he feels a little freedom this afternoon. He even put on some shoes and a mask and walked down the hallway to the toys with Ashton. He thought that was pretty cool considering he has been trapped in this room for 4 days now. One of the side effects of the chemo is that he may walk on his tip toes. Well, he was definitely walking on his tip toes as he walked around this afternoon. All in all it was a super long day for all of us. Ready for a good nights sleep so we can hopefully make our 4 hour drive home tomorrow :)

Chase's 24th of July Celebration

One thing we did get lucky with is the view from our room. Since Chase isn't allowed to leave his room it helps a lot to be able to look out the window. Last night there were many different firework shows all over the valley and we were able to see most of them. Chase sat in the window of his room for a good hour watching the cars drive by and the fireworks. The steroids he has to be on make him crazy and so we never know when he will be happy or when he will literally be screaming so hard his eyes bulge. When he screams it is usually over something so small. Like his pop tart breaking in half while he is eating it or his ice cream sandwich squished and broke while he was eating it. There are REALLY good times and then the times when I just wait out the seconds for my Chase to come back to me, because I know it isn't him - just the meds. So last night was a REALLY good time and he was so happy. We laughed a lot with him. The hospital, like I have said before, is great. Kids Crew came up yesterday and brought him some paint and a little car that he could paint. He was loving that. We have had many, many people let us know of prayers and special fasts taking place. You don't even know how much that means to us. It brings me to tears to think of all the people that have helped us through this sudden change in our lives. Each day it is so nice to have the Dr. come in and tell us that he is right on track with his treatment. His red blood cells were low this morning and it is amazing how much better he feels once they do a transfusion. He just laid in bed all morning, but as soon as he got that "red juice" he was back up and playing. I know we are right on track because our Heavenly Father is watching over our little boy. He has never left our side, but has just thrown us a good testimony strengthener. We were probably getting a little to relaxed in life thinking we could do it on our own. He thought He needed to give us something to remind us that He is there and life is not possible without Him in it. I am so thankful to have the gospel in my life so that not only can Chase make it through this, but I know I am going to be on my knees MANY times every day praying to make it through this. There is a church branch here at the hospital that brought us the sacrament this morning. Just listening to the sacrament prayers today knowing that our Savior has gone through all this suffering and more just made my heart hurt. To think that He had to suffer this kind of pain plus more is unthinkable. I cant even comprehend anything worse than watching your little one go through something and just wishing you could jump in there and do it for them. Our Savior is AMAZING!!! He did jump in and do it for us. He did bear every burden we will ever feel. I know He is there with His arms around us comforting us because He does know the pain, and He does know how we feel.

This is the view out our window!!!

Chaser with his milkshake watching the fireworks.

Day 2 of Treatment

I told Chase to give me a thumbs up and he always uses his pointer finger!!!


So it actually feels like an eternity since we got here, so much has happened in the three short days we have been here. Chaser is on day two of his treatment. He had a down morning. His steriods have kicked in and we are fully seeing the effects of it. He is having some mood swings. Some a little humorous, but I am sure after a few days they wont be anymore. Others have been just sad because he wants something so bad that we just can't get him. For example, he loves his Gigi (blanket). It goes with him everywhere and is his comfort especially when he doesn't feel good (another reason I knew he didn't feel good cuz he wanted it all the time at home). Well, he has had a little nausea, and because of all the fluid they are giving him he is peeing like crazy. We have had to wash Gigi twice in the last two days and today it didn't go over so well. He was asking for gigi for a good 45 min when Jody and Lacy came to visit. They brought him some cars and gigi was put out of his mind for a while. He got out of his bed for the first time (other than us holding him in a chair) since his surgery two days ago. It was a good sign and fun to see that he was having fun playing with Jody on the floor with his cars.
His platelets were low today so they had to give him some....something I am coming to find is a normal thing with this disease - Blood transfusions and platelets, at least so far. He had a fever last night and the nurse said that it can wipe out their platelets in a hurry. I am so overwhelmed by all that I am learning and still need to learn in this whole process. As hard as it is to be confined in this hospital I am nervous to go home for fear I am going to do something wrong.
We have had a lot of people asking when we will be going home. They have been telling us Tuesday. It just all depends how he responds to all the treatments, but that is what we are shooting for. Then he has to be back up here on Friday for more bone marrow, and chemo. We did find out there are a few times that we can do chemo in St. George. If all he needs is his chemo then we should be able to do it there, but for the first few months he has a lot of other treatments that need to be done along with the Chemo so most will be up here.
So far we have had some good times and some bad times. When the good times come I make myself sit and enjoy my little boy and his sweet spirit so that when those bad times come and he is demanding and just not himself I can push through them. I am sure that it is going to get old fast, but we are just taking it one day at a time right now. Anytime I think about the future, or remember that I am pregnant (yes there has been times in the last few days I have forgotten despite the huge bulge in my stomach), or I think about my little Abby girl and how her life is going to change I just tear up and my heart breaks for all my kids. This isn't a one person thing. Though Chase is getting the crappy end of the deal, I have to stop and think about how much it is going to affect Abby and her lifestyle to. There are so many changes we have to make that are going to directly affect her it just makes me hurt for her. The last few days I have cried for Chase and his poor little body. Today my mind seemed to keep going to Abby and I would end up in tears every time. Thank you for all your prayers for our Chaser, and please pray for Abby too. She is an awesome big sister and I hope and pray that she is ready for this fight too!!!

The Reality is Setting in

Just a little update....Chase is doing great. He is tired, but that is too be expected. His little hip is sore from the bone marrow extraction yesterday, but they are keeping him comfortable with meds. He has always been my solid plump little boy, but with all the fluid they are giving him he is plumping up more. We are going to need to do some clothes shopping. He will be a little plump for the next month or so. The meds they give him will make him swell, eat me out of house and home, and the exact words the dr. used were "he will be a living terror." That is all from the steriods that he will have for the next month. We will be wearing out the road between here and St. George for the next few months by making weekly trips up for chemo and such. He is in lots higher spirits today. He was up playing x-box lightning McQueen and eating his fruit loops this morning which to me was a good sign. We haven't gotten results back yet as to the lumbar puncture. The reason they did it was to see if there were cancer cells in the CNS. If there are then therapy has to be a little tougher to get to them seeing that his chemo wont cross that blood brain barrier.
He made me laugh this afternoon when he woke up from his nap. He was laying there and hadn't even showed any signs of waking up. All the sudden his eyes popped open and he said, "A lizard!" I said to him, "were you dreaming." "Yes," he said. I said to him, "what color was the lizard?" "Red," he told me. I guess those pain meds they have got him on are giving him some good dreams.
The people here at this hospital are AMAZING!!! I don't even have words to describe the care and miracles that happen here at Primary Children's.
Thanks for all the comments on the blog and facebook. We have read every one of them and they mean so much to us. We love you all and are thankful for all the prayers!!! I know Heavenly Father is watching over our little Chase and is hearing all the prayers for him!

Our Little Chaser

Our perfectly healthy little boy has a weekness to all of his super powers. He thinks he is a super hero, but I guess all super heros have an achilles tendon. We have found Chase's. Starting about Sunday afternoon he just didn't seem like our normal little ball of fire. He was asking for naps (he is always super good and takes naps well, but what little two year asks for his nap?) Just a little off for him. He also was complaining of something hurting on his left side. This would happen when he was climbing up onto a chair or a bed etc.... He was off just enough that I took him with me to my OB exam on Wed. morning. We see a family doc so he looked at Chase while we were there. We LOVE Dr. Thompson and are so thankful for the chance we have to be his patients. He knew there was something wrong when he felt his spleen and it was enlarged. He told us to go get some lab work and it would take a couple of hours to get results, but he thought it was something called ITP. Nothing too serious and it has no treatment to it. I had my car all packed up and we were leaving from the Dr. to go straight to my parents in Logan area to then continue on to Bear Lake. We were packed up to stay for two weeks so my mom could help me with the kids (that is because I am an enormous whale at this point and Chase can run faster than I can....side note:I have about 8 weeks left before the new little one comes). So Dr. T said just get on the road and if it comes back abnormal you can go to Primary Children's. And if it is ITP there is not a lot to do anyway. So we started our journey that I never in a million years thought would put us where we are today. After about three hours I started to think maybe I should call the Doc to see what was taking so long. I was also in Provo area and thinking I needed to know what was going on because I was getting close to Salt Lake. The medical assistant said he was in an exam room but would call me back when he got out. I was at 5300 S. when he called. He kept me calm and just said they wanted to run some more tests because there were a few things that didn't point exactly to ITP. We came up to Primary's and the ER saw him and didn't hesitate to admit him. At this point no one is telling me anything. It wasn't until I walked into the unit he would be admitted to that I knew something wasn't right. He is now in the ICS. ImmunoCompromised unit is where we are. This was not a good sign to me. Finally our awesome nurse last night sat with us and told us everything that was going on. At this point it started to set in that this was not just blood work they were doing. They hooked him up to the IV. It doesn't slow him down a bit. We have to run behind him with it. We were in the play room and he was going to fast. We told him he needed to slow down so we could stay caught up with the IV and he said, "okay" and if you know Chaser his "okay" is like the cutest thing is the whole world. He then went on to do the slow motion run. Like "Chariots of Fire". It was great! His sense of humor will never leave (at least I hope....). So back to the reality of what was going on. I laid awake last night thinking "how did this happen?" It was crazy how it all fell into place like it did. In fact my inlaws went to the temple last night and my father in law sat next to Dr. T. We were packed for a long vaca and have EVERYTHING we could possibly need with us. Ashton was on his way to a golf trip he had been planning since dec. in palm springs. So at this point I had called him and said I think you need to come back. Ben (Ashton's Bro.) and Chelsea (my soon to be sis in law) were such a HUGE help. They came for moral support and helped out with the kids, who were both so excited to see Ben and Chels because they love them. Abby was in good hands and went to spend the night with Ben. She was so excited for a sleep over with them. My mom made it down here to stay the night with me until Ashton could get here from Cali. We had a good night and couldn't get Chase to go to bed. Midnight came and went and he was literally bouncing off the walls still. He was not a sick little boy....."WHY AM I HERE?" was all I kept thinking. I mostly laid awake last night just thinking what is this??? At this point we had no idea, but the nurse was very helpful in letting us know some possibilities. By morning and after lots of blood draws we had a better idea that it was Leukemia just didn't know what kind. We now have a diagnosis of Acute Lymphoblastic Leukemia. He went into surgery this afternoon and everything went great. They got a bone marrow sample, did a lumbar puncture and then put chemotherapy into his CNS, then put in a port. A port is a little piece of plastic underneath his skin so we don't have to clean it or anything. What it is for is direct access to his blood stream. This is used for any IV's or for his chemotherapy. He is now up and awake and as happy as he could be for the rough day he has had. For the future we will be making MANY trips to SLC. In the next few months it will be once a week. Treatment itself lasts 3 yrs. So anyone want to sell a house in SLC??? I have a feeling it is going to become our second home.
Your prayers have ALL been heard. Even though the leukemia isn't the best thing to have on our plates everything else has been textbook and he is on the good side of having leukemia (did I just say good and Leukemia in the same sentence?).
Thank you all for all of your love and support. I know that Heavenly Father has been with us from the very beginning and will continue to be with us because of all of your prayers! We love you all and appreciate all that you are doing for us! It is amazing what love and support gets poured out in times of need! I can't say thanks enough. I know that each and every prayer has been heard and I have felt every one of them too. Love you all!!!