Kickin' Cancer

We got some awesome news today! Remember the bone marrow aspirate that was done last Friday? We got the results back today... and there were NO leukemia cells to be found! Hooray! We could not be more excited about this news. But, we will still have to wait until Jake's next bone marrow in two weeks to find out for sure if he is in remission. They look at ANC and bone marrow results together. It is good that his ANC is not at 0, but they want it to be closer to 300 or 400. He was at 100 on Friday. Meaning that his ANC and bone marrow results kind of go hand in hand. Not sure if I completely understand, but it is good news anyway and we will take it! And Jakers is going to BEAT this! He is a warrior and a fighter and we could not be more proud of him.

The past couple of days have been good. Yesterday better than today. It is hard, and I know I have said this before, but we never know what to expect day to day. I knew the minute he woke up yesterday, it would be a good one. We did a lot of schoolwork, ate, played catch, went and got Chik-fil-a, pushed each other on the swings, ate some more, rode bikes for a few minutes, made some grilled cheese sandwiches, played the xbox for an hour or so, and ate some homemade pizza. I am amazed at how much food this kid can pack in his skinny little body. He is like a bottomless pit. I know it is normal for someone on steroids, but still! It is crazy to watch.

(Can I just say how much I love their little bald heads? I think it is one of my favorite things to see bald boys running around everywhere.)


Today he woke up and I knew right off it would not be a good morning. He and Crew got in more arguments than I care to admit. He did not want to take his meds. Which is a fight almost every day in and of itself. He does not have a ton of energy. He wanted Olive Garden for lunch, and he fell asleep at the table while waiting for our food.

He mainly wanted to lie around and watch tv or play video games. Or yell at everyone that came in sight. That happened quite a bit as well. He can have a sassy mouth when he wants to. Only NINE more days of steroids left and then maybe my sweet little boy will come back.

We are still having issues with the bald head. Jake will not take off his hat for anyone or anything. It took over 45 minutes on Sunday just to get him to get in the shower because he would have to remove his beanie in order to get in. When I finally realized he just didn't want to look at himself in the mirror, we were good to go. I stuck him in the bathroom with no mirror and he put his hat right back on after he showered so he would not have to see. We had a long discussion about everyone that came and shaved their heads just for him, and his response was, "Yeah! And their's will just grow right back! Mine won't grow back in for over a year!" I swear. He is way too smart for his own good. That is not something I would have expected him to realize. I know it will get easier for him. It will just take a little bit more time to get there.

And finally, I will leave you with a video from saturday night. Every time I watch it, I laugh. Because this is what our lives have turned into. Negotiating with a nine year old boy. Who could probably win a case in court with the way he can fight back. Jeff is trying to get him to take his medication. The memory on my phone was full... realize that this went for quite awhile before I picked up the camera and for about an hour after this video. Again. He is too smart for his own good.

Shave Your Head Day

We win. Hands down we win. For the BEST friends and family ever! Seriously. I am amazed at how many people came and not only supported Jake, but also shaved their heads, even though I am sure it made some people uncomfortable... and some even worried about their hair ever growing back!

I was worried all morning about how it would go over with Jake. He woke up with a big bald spot in the front of his head. Which in turn caused a meltdown. He still did not want anyone to shave their heads for him. Especially his friends. But, once people started showing up, he forgot about that. Once people started shaving their heads, he realized it was okay and maybe, just maybe he could do it to. He hid in the back for a little bit, but eventually came out and even cracked a few smiles while getting his hair cut. We are so glad to have that out of the way! It was one of the things we have been dreading the most since his diagnoses. And I know that I sound like a broken record, but THANK YOU. All you wonderful people. Thank you for coming and supporting him. And thank you to those that were not able to make it, but shaved your heads anyway for this kid. We are forever grateful. I keep getting texts from those of you who did... would you mind sending a picture along? My email is hjamieson@mac.com. I would love to have a copy and to also show Jake how much he is loved. Here is some pictures from the day. I am not sure how many did end up shaving their heads. I got most pictures, but know I missed a couple. We counted over thirty.




This kid did NOT want to shave his head. At all. We told him the decision was his. And at the very end, he decided he wanted to do it. The only stipulation being he would not go to school. Well, that wouldn't work and we told him so. About ten minutes later, he sat down in the chair and did it. All on his own. He is our vain child. He likes to look good and does not appreciate being dirty or not having his clothes match. He gets embarrassed very easily. And so the no hair thing is a big deal for him. It will be interesting to see how he does at school tomorrow since they have a no hat policy. He did tell me today that he will just wear a hoodie to school and keep that on! Sweet boy. We are so proud of him for supporting his big brother! It makes it even more special because it was such a difficult decision for him.


Jake and his cancer buddy, Tommy. Tommy finishes treatments next month! Hooray! Congrats Tommy! And it was so sweet of him to shave his head AGAIN. After no hair for almost a year. Cute boy.


LOVE you guys.

1/27/12

Friday equals clinic day. Plus a bone marrow aspirate and LP. He did extremely well considering the fact that he was starving. The steroids have kicked in full force. Meaning he wants to eat anything he can get his hands on. For example. Yesterdays breakfast consisted of six scrambled eggs, two pieces of toast and two blueberry muffins. The conversation we had DURING breakfast was about where we were going to eat for lunch that day. "How about Chili's? Or Red Robin? I haven't been there for awhile, and the food is delicious!" It is never ending. And he constantly wants to eat. Last week, he woke up in the middle of the night and came and got in our bed. He kicked Jeff out and about three different times, he woke me up saying, "Mom! I just can't stop thinking about food! I'm just so hungry and I keep having dreams about it!" It makes me laugh because it is truly all he thinks about right now. My point is that he had to fast all morning. No food until 12:30. Which is painful for a kid on steroids. And he did awesome.

We only got preliminary results back on the bone marrow. We will find out exact numbers on Monday. As far as we can tell right now the chemo is working and is killing off the cancer. His counts came back low. ANC is at 100. Which means we have to be very careful. He did not feel well at all today. He came and got in bed with us again last night because his bones were so painful. He described it like "a steamroller is crushing all my bones!" His left leg and his wrists have been bothering him on and off all day and he has not had any energy. He is also losing his hair like crazy. It is a good thing we are shaving it all off tomorrow because I don't think I can take much more of his hair getting everywhere! It is starting to irritate him as well. He has a large bald spot in the back of his head. Sweet boy. It is becoming more and more real to him. The hair thing makes it real. And it is no fun.

Other than that, he really is doing well. We have not had a lot of roid rage problems this week. The only one I can really even remember was a few days ago. We were on our way home from lunch and he started yelling at me for about thirty minutes that he wanted a dog. And we are awful people for not letting him get one. He will clean up the hair and the poop and buy the food and get his shots, everything, if we will just let him get the dog! It was all I could do to keep a straight face. He was so adamant about it and would not let it go. He told me that if we had a dog, he would not be the only one shedding. Which I had to give him some credit for. On the other side of the rage is a sweet little boy that is so kind. He apologizes for the smallest thing, like getting hair on a pillow which he cannot help at all. He tells Jeff and I that we are most loving and kindest and best mommy and daddy in the whole universe because we take such good care of him. The kid really and truly makes me smile. He is so good. And is taking all the yucky stuff we are doing to him and making the most out of it. He is our warrior and we are so grateful that he is ours!

Head Shaving Party

We will be having a head shaving/ ice cream party for Jake on Saturday January 28th at 12:30. If you would like to come, please rsvp to hjamieson@mac.com and I will give you the address of where we will be doing it at. I need to get a count of about how many people will be there! Thanks so much!

uncertainty

Most days, we never know what to expect. We wake up wondering what the day will bring and how the boys will do. Most of the time, Jake feels really well. Which I could not be more grateful for. He felt well enough on Saturday to play in his basketball game. We were very hesitant to allow him to, but he begged and begged and we finally relented. I have to remind myself he still needs to be a kid and when he feels good, to let him be one. He did so good. You could tell after the first quarter he was slowing down and starting to get tired, but he hung on and played throughout the whole game.

Yesterday he woke up with mouth sores.

Today his hair is falling out. It becomes more real every day. And this hair thing is the final push to make it 100% real. It makes me so sad. It is just the beginning of so many more yucky things to come.

Tomorrow, who knows what it will bring. But the farther we get into it, the easier it is to prepare yourself. And we are ready. Because in order to get to the end you have to go through tomorrow. We will get to the end. It may be a ways away, but we have a warrior on our hands and he is doing so so well.

Spaghetti Fundraiser!

Hey all! This post is coming to you from one of Jake's biggest fans. My son is the same age as Jake and our families have become very tight the last couple of years. Basically we love them like family! Like all of you, we have asked ourselves what we can do to help the awesome Jamieson fam. We have enlisted the help of some other friends and have formed Team Jake. One of our goals is to raise money to help battle medical bills so Jake's family can focus on battling his health issues.

There is a spaghetti dinner fundraiser planned for Friday, February 10. It will be at St. Vincent de Paul at 5:30 p.m. The cost is $12 per plate or $30 per family. There will also be a silent auction. If you would like to attend, please RSVP and give us a headcount of how many are in your group by emailing helpjakej@gmail.com. You can pay at the door that night. If you have an item for the auction, please let us know that as well. If you can't attend but would like to contribute, you can simply click on the 'donate' button at the top of this blog or you can mail a check to: Jamieson Family at PO Box 9065 SLC, UT 84109. Please give generously but remember that ANY amount helps!

I feel like I should mention that Heidi and Jeff have not asked for any help and I hope they don't feel awkward about this. Actually, too bad if you guys feel awkward... there are soooo many people who love you guys and want to help so let us! Love you all!

Team Jake

Day 8

Eight days down. Who knows how many more to go. Another clinic day. Another day full of waiting. Another day of coming home and a child with 'roid rage yelling at everyone to give him a little more respect. As long as things are quiet and there are no loud noises, Jake is happy. Just make sure his brothers aren't around to tease or play the piano or yell and we are good to go.

Clinic went well. We had to wait for the lab to send up his chemo again, but Jake was content with a video game in hand. His counts look awesome. ANC was 1600. Which means he has some type of immune system, but, the steroids could be masking his real counts so he is still considered immunocompromised. He got another dose of vincristine and pegaspargase. He has not started losing his hair yet, but it could start falling out sometime this week. I am waiting on the head shaving party until it does just because last time we shaved it, he was pretty traumatized. I want this to be as easy as we can make it for him.

Cole and Crew are doing well all things considered. I am pretty sure Cole is feeling left out at the moment. Sometimes I worry more about how this affects him than anybody else. He has started saying he has some of the same symptoms Jake has had in the past. "My legs hurt, my tummy hurts, etc." My heart breaks for him. We are trying so hard to give him the attention that he needs but somedays it is hard with everything else that is going on. He sees Jake staying home all day with me while he goes to school and wants to be able to do the same thing. Jeff took him out of school the other day and the two of them went to Planet Play for the afternoon. It almost made me cry how excited he was to go on a daddy date. This whole cancer thing does a number on your family. This time around, our kids are older and understand more which makes it harder to explain things and deal with their emotions as well. I just keep telling myself to take it one day at a time. And I know things will eventually get easier. It just still seems a little bit surreal.

To: Everyone Love: Jake

Hi! Thank you a ton for praying and fasting for me. It means a lot. I've been feeling okay today. Today has been an awesome day. My stomach hasn't hurt that much today. So it has been good. Yesterday was much worse. It hurt to breathe. I went to Cafe Rio with my grandma and mom. Today my teacher is going to come to tutor me. I'm very excited! It's going to be awesome cause I haven't seen her in awhile. I had my favorite restaurant today and my stomach felt awesome this morning. Yesterday I passed off one of these little things at piano and got five bucks! Thanks for all the notes and cards and candy and love. The notes make me feel excited cause I hardly ever get notes and because its from other people being able to talk to me kind of. Thanks again.
Love, Jake

Just to reiterate what this little man has said, THANK YOU! I know that the only reason he has been doing so well the last few days is because of the hundreds of prayers that have been sent his way. We are so humbled and grateful for the support that has come from everywhere, even people we have never met. We could not do this alone. So thank you. Thank you for taking the time to write this boy a note to let him know you are thinking of him. Thank you for the many notes and phone calls and messages you have left for Jeff and I. Thank you for the many prayers that are sent his way on a daily basis. We can not say it enough and are so grateful for the many blessings we have seen over the last two weeks.

And because I can't post without a picture and I finally went through a few of these, here are some family pictures my sister in law took last week. As usual, Crew was awesome, Jake was a pain in the neck and Cole was even a bigger pain in the neck. My children are by far the worst when it comes to taking pictures. But even so, I am very happy with the way they turned out even though Cole looks like he kind of wants to punch your lights out.

mom school

I was never one of those moms that thought homeschooling was the way to go. Don't get me wrong, I think the mom's that do it are amazing, but I have never been one that was cut out for it. I still am not cut out for it. And yet, I have been thrown into the homeschooling world. With a third grader. My first grader brought home a math paper the other night that I had to pawn off to his grandpa because I didn't have a clue how to do it. Which proves I am not cut out for it right there. We had fun today doing division problems and journal writing and coloring. Luckily his teacher is sending some schoolwork home because I would not have a clue where to even begin looking to homeschool him. It is good the kid is way too smart otherwise I would have to worry about screwing him up! He just makes me laugh with his crazy comments about having me teach him. You KNOW it's bad when he even laughs at the fact we are doing "mom school".

He had another good day today. He did have his moments. He is still struggling taking his meds. And he has been sick to his stomach which we did not have to deal with last time around. He has also started to complain about some leg pain. Even so, I am still grateful. This could be so much worse than it is. He is still able to run and play and be happy and that is all that matters. It is okay that our world has been shaken up. It just means more time spent together. It also makes me appreciate all three of my boys that much more. It reminds me to hug them more and to let them know how much I love them. You cannot take life for granted. And I am so grateful for every single day I get to have with them.

P.S. If anyone has any good homeschooling sites or ideas, I need all the help I can get!!!

And just because this child makes me happy and I laughed out loud when I saw this picture, I will leave you with the baby of our family.

Control

Things have been much better the last couple of days. We have come to the realization that Jake is fighting for control. And who can blame him? His whole world has been turned upside down and he gets what is going on this time around. He knows what is happening and is trying to figure out a way to do things his own way. He is refusing to eat and refusing to take any medication. He keeps telling us his tummy hurts too bad, but more than that, I think it is something that he has control over. As the day has gone on today, it has gotten a little bit better, but his appetite is still not what it should be on steroids and we worry that he will start to lose weight again. The only thing we have going for us is that he remembers the feeding tube and HATED it. But when we told him that if he continues to lose weight, we will be forced to give him a feeding tube again, he just replied with, "So what? I don't care." He is too smart for his own good. Sweet boy. It is harder on him than anyone else. We have answered many 'why' questions the last couple of days. "Why me?" "Why do I have to take medicine again?" "Why can't I go to school?" It has been a never ending battle trying to explain why Heavenly Father would allow him to get cancer not only once, but twice. Other than the constant battle of meds and eating, he is good. He feels well most of the time and was even running around and playing with cousins last night. Hopefully he can stay this way for awhile... we will see. I am keeping my fingers crossed that the good days will outnumber the bad and so far we have been lucky. Only one awful day so far. And we are still taking it only one day at a time. So, who knows what tomorrow will bring?

Here are some pics getting chemo on saturday up in ICS. We had fun watching Pirates of the Caribbean, playing Batman on the Xbox and reading the new Percy Jackson series. He also ordered room service. Twice. Five hard boiled eggs and six pieces of bacon later, he was done.

Saturday

I have decided I am not going to sugarcoat anything. I am just going to say it like it is. And I absolutely hate this. I hate that we have to spend hours and hours and hours on end at the hospital. I hate that I am away from my other two kids while my other child is enduring endless pokes and prodding and who knows what going into his body. I especially hate the way that it has affected him. Today has not been a good day. We had to go back up to PCMC for a dose of Pegaspargase. It is given to him slowly, over the course of an hour. And then we wait an hour to make sure there are no side effects. That went fine. Other than being there for almost five hours when it should have been two. It was when we came home. I turned off the Wii. And got a monster to explode out of my oldest son's little body. He tried to run away. Twice. He kicked and yelled and screamed. And when he was sent to his room, kicked the walls. And when you try to reason with him, there is no reasoning. I realize this is not him. I realize that it is the medication that is trying to kill the cancer running rampant in his body. But that does not make it any easier. It is so hard to see what this medicine is turning my seemingly healthy nine year old into. And I hate it. I hate having to spend my time next to his door to make sure he doesn't walk out the front door and I not know where he ends up. I hate that my seven and three year old have to watch. I hate steroids. I knew I hated them before, but they are on a whole new list today. And I am beyond frustrated.

And the fight begins.

One chemo day down. About 799 left to go. At this point, we are taking it one day at a time. I cannot even think about next week let alone next month and what it is going to bring. Jake had an echo this morning to make sure his heart was functioning okay. One of the drugs he was given today can cause heart problems. After the echo, we headed up to clinic and began the chemo process all over again. It was a bit surreal and a part of me feels like we never even stopped. But then I remember this part is supposed to be over and reality hits again. He did great. He didn't even kick our favorite nurse in the stomach this time around when she accessed his port. He received a lot of fluids, vincristine and doxorubicin. We also started my favorite drug, prednisone. Only instead of taking them twice a day, he gets to take them three times a day. Lucky us. Can't wait for those babies to kick in. Ironically, his counts still looked great. They had dropped a little bit from last month, but it would not have caused any concern yet. That is what is so crazy to me. I have this seemingly healthy kid that is running and laughing and playing. Nothing is wrong with him. And we get to make him sick.



Cole and Crew came up as well. They talked to the child life specialist for a long time and eventually had their blood drawn. I was impressed. Neither one of them even flinched. Three brave boys. And they are all mine. I don't know how I got so lucky.

The real fun started about an hour after we left the hospital. The 'roids kicked in. And this kiddo decided he did not feel well at all. I knew it was legit when he slept for about an hour. He NEVER sleeps during the day. He has had no energy and not a huge appetite either. It has begun. And I am not sure I am ready. I don't know if I ever will be ready. But even so, we will fight through it. He is our little warrior. And I am so proud of him.



(Some of Jake's cute friends from school brought him a bear they had signed. He drug that thing all over the place today and was so proud to show it off.)