Yesterday I was playing around on Jake's ipad. I came across a 'video journal' that he had done in december. It made me cry. Again. Because a part of me does not even recognize that child anymore. Fun, happy, and excited about life.


Before Jake ever got sick, I never realized how brutal this cancer business really is. It is not just cute little bald kids on a big movie screen that make you cry. It is not going to hospitals and getting poked and prodded by doctors and then getting your chemo. It is feeling terribly sick. It is mouth sores so bad you cannot even eat. It is not being able to eat anything except popsicles for days on end. It is not right. It is not right that we have to listen to our nine year old calmly tell us that if this is what life is going to be like forever, he would rather go back and live with Heavenly Father. He is that miserable right now. And my heart is aching for him.

The problem has become that he is older. And he understands. He knows that there is chance that he won't get better. And right now this nine year old little boy is wondering if the chance to get better is worth it. He is sleeping for most of the day. He doesn't feel well enough to do anything except lay there. And I hate it. I hate watching him have to suffer this way. There are so many kids that have to do this and it is not fair to any of them.




Ugh. What a depressing post. I will leave you with something that had me laughing out loud so I am not feeling so icky!:) Today Cole came home from school talking about a book they had read earlier in the day. He has this thing where he likes to write notes and then you check the yes or no box. He wrote me a note that says, "Mom can I have a Igwana I will take very good care of it? from your lonely child Cole" The lonely is what got me. Seriously. The kid knows how to milk it. And he is hilarious. He has been talking about getting an 'igwana' all afternoon just because of a book they read in school. He even wrote about it in his journal tonight. Love him. Love his quirky personality and how funny he is. He has us cracking up most of the time because of his witty comments.

A four year old little boy.

We just so happened to be stuck in the hospital on Monday. It also just so happened to be this cute boy's birthday that day.



So instead of telling him it was his birthday, we waited. Until today. And he had no idea. In his mind, today was February 20th. And today he is four years old.



Today is the day that he has been anticipating since before Christmas. Whenever christmas would get brought up, his only comment was, "And guess what's after christmas??!! My birthday!"



He has even had the type of party he wanted picked out months ago. Although it has changed a couple of times. At first it was a crocodile party. And then a dinosaur party. And finally, a DINOSAUR and CROCODILE party.



And he loved every second of it. We had cake and ice cream. We had a dinosaur dig and all the little kiddos got to pretend to be dinosaurs with their bran new dinosaur tails. He was spoiled rotten and got a lot of crocodile and dinosaur toys. And new roller skates, which he put on immediately. Ten seconds later he had fallen down the stairs and came in crying telling us he didn't know how to 'ice skate'. He got a dinosaur pillow pet and dinosaur backpack and a dinosaur train set. He is only slightly obsessed if you cannot tell. (His favorite dinosaur is a brachiosaurus. We had a 'red brachiosaurus' birthday cake.)



This kid seriously makes me crazy. In a good way. He is the happiest, most easy going child of all time. I love the way he talks. I love that he is a tease. I love that he thinks he is hilarious when he makes up his own songs. I love his chubby little belly and fat little feet. I love that he has his obsessions that change year to year. I love how he talks and cannot say his r's. I love that he is so snuggly and loves to sing "I love you" songs at bedtime. I love how he likes to bite my cheek and tell me what I taste like. Usually it consists of strawberries and yogurt and eyeballs. (Today it was boogers instead of the eyeballs.) I even love how loud he is. I love that he has always been and still is, a major mamma's boy. He makes us all happy. But, I hate that he is getting so big. I would love for time to freeze him now. He has been the best little boy. And I know I have said it before, but he is what keeps me sane a lot of the time. There is just something special about this kid. And I love him to the moon and back.

(Some more pictures of his birthday)

Email

(from Jackie) -
On a quick note, there are a few of you that emailed me this past week regarding the Jamieson's, and due to some problems with my email account, I lost a couple of them. If you emailed me this past week, and didn't hear back from me, PLEASE re-email me!! jjottesen@gmail.com
Thanks,
Jackie

roadblocks

I think I have started and restarted this post three different times now. I really don't even know where to begin. I am still in shock from all of the information we received this afternoon and am trying to process it. Jake finished his five rounds of chemo this yesterday morning.


He did very well overall. He has been sick to his stomach and did not eat anything until late last night. We were told to expect his counts to drop in days and to expect him to not feel well. Because of the drop in counts, we are supposed to give him neupogen for the next ten days. Neupogen is this lovely little drug that comes in the form of a shot. I will give it to him in his leg, while Jeff will most likely hold him down. I am anxious to see how he does with this. Especially when you consider how well he did the last time around. He will also start needing to have blood transfusions. We already have a time scheduled on friday for him to go in for blood.

Cole came up on Saturday and for a few hours on sunday. He was very clingy and did not want to leave the hospital either day. I know I have said this before, but he is the child I worry about the most through this whole ordeal. He is so quiet and it is difficult to get him share how he is feeling about things. Things that are usually not a fight with him, have become difficult. I realize that he is trying to adjust to things as well, but I still worry about him. It is not just Jake this is hard on. It has turned Cole and Crew's world upside down too. He and Jake played the xbox and had a lot of fun together. Which I am so grateful for. Because with those two, you never know what you are going to get!:)


One of Jake's best friends came up to visit on monday. It was so good for him... they had fun playing Diary of a Wimpy Kid board game and of course the xbox. I am not sure what people did years ago with no video games to keep their kids entertained in the hospital! As much as I hate the thing, it was a lifesaver most days!



After all of this, we were told that he needs a bone marrow transplant. The bone marrow test that was sent back to seattle this weekend came back positive. Meaning, he is still not in remission. .01% of his cells were still leukemic. It may sound like a small number, but it means that there are still about a million leukemia cells floating around in his body. Because of this, a transplant will give him the best fighting chance to survive. If we did only the high dose chemo, he would have a 40% survival rate. With the transplant, his survival rate goes up to about 80%. Even with the odds though, I still have my doubts. There are so many risks involved with a transplant, it scares me to death. Not to mention the months that you are in the hospital and the side effects. We will finish out this course of treatment, and do another five weeks of chemo. After which, he will be admitted for the transplant. It is tentatively set for sometime in May. He will miss all of fourth grade. He will be on immunosupressants and be kept isolated for a very long time. Even with all of this, if it saves his life, I am more than happy to do it. Both Jeff and I and even Jake are in a little bit of shock. We never expected to be in this situation. We never expected radiation and chemo and a transplant. It has been a difficult couple of days. I am pretty sure I am going to go prematurely gray because of this child and the stress that comes with all of this!



Thank you so much for the prayers and cards and support that is continuously sent our way. We have a rough road ahead of us, but we know that things will work out the way that they are supposed to. We have a wonderful team of doctors and nurses and know that our little kiddo is in the best possible hands. We will continue to keep you updated on his progress.

inpatient

Home health came in on thursday to make sure Jake's counts were high enough to start his second round of chemo yesterday. And lucky us, they were! His ANC was at 1000. We got here bright and early for a back poke and another bone marrow aspirate. (pictures from top to bottom: Jake waking up from surgery, getting a dose of intrathecal methotrexate in his spine, and the bottom pic is of his bone marrow. That needle is actually smaller than the one they normally use because they did not need a large sample. Crazy that we are able to do things like this isn't it?)


And about an hour later, we were admitted into ICS. He is getting two different chemo's every day for the next five days. One is called Etoposide and the other is Cytoxan. He was able to start them at about 7:00 last night and we finished with both at 10:00. By the time they were done, the poor kid was wiped out and was not thrilled to be woken up every two hours just to go to the bathroom. But he did it and was a great sport about the whole thing.


We also had a radiation appointment yesterday. It was more of a trial run than anything to see how they wanted to do the radiation on him. He has to hold still for about 10 minutes for the treatment and lay in a specific position with his feet taped together. I will admit, I was worried about how he would do, but he passed with flying colors! He did not complain and did exactly what was asked. At one point he did start asking why he has to be the one to have cancer twice when none of his friends have even had it once. I am pretty sure that is the hardest question of all to answer. Because it really and truly is not fair to this kid. And I don't have a real answer. The only thing that Jeff and I are able to tell him is it is happening because he is special. And Heavenly Father only picks his most special kids to do this.



He has been doing okay today. He is very lethargic. We watched a movie this morning and he played the xbox for awhile. And then fell asleep. Which he does not do. Ever. He doesn't have an appetite today which is a huge 180 from where we have been. The only thing he has been able to eat today is a bowl of cereal. My heart aches to see him like this. You can tell he is not feeling well and these drugs are doing a number on him. And he has only gotten ONE dose! It makes me nervous to see how he will do throughout the rest of his treatments.

Really quick update on this week:
We were supposed to get results back on Tuesday to find out if Jake is in remission or not. And of course, there is still no answer. Long story short, he is on a study that usually does a specific kind of test for the leukemia in the bone marrow and his sample was sent to them and they never tested for it. We are redoing the bone marrow aspirate tomorrow and will find out next week whether or not he is in remission. As for the radiation. Yes. He does have to have radiation. We met with the radiologist yesterday and he will start that part of treatment next wednesday. He will have twelve rounds done. If counts are good today, he will be admitted tomorrow for a five day stay. So fun. And that is our life for the next couple of weeks!

10 on 10: February

I had initially planned on doing this project on my other blog, but decided against it. It is too hard to keep track of with the project 52 I have going on over there. I had seen someone else do this on their photo blog and thought it would be fun to try. The idea is to shoot 10 pictures on the 10th of each day and post them. You can see January's post here. This month, the 10th landed on a friday. Which ended up being a crazy day. I did not take as many pictures as I had wanted to, but that is ok! Maybe next month it will go a little better.

1. Jake and Cole had their Valentine's parties at school today. I had found these valentines online and thought we could stick a sucker or some piece of candy on them. My seven year old had the idea of getting a pirate eye patch and putting it around a can of soda. One of the many reasons I love him. The way he thinks! And I think they turned out pretty cute. He did good!


2. Jeff took Jake to the hospital for his procedures at 6:00 in the morning. They did not get home until about 3:30. So in the meantime, Crew and I got to play. It was such a beautiful day outside, so we did lots of underdogs on the swings:


3. We rode around on his new bike he got for Christmas:


4. And then ran a ton of errands that I did not drag my camera around on which was lame because that is kind of the whole point of this right? Anyways, Jake and Jeff got home with three grilled cheese sandwiches from In-N-Out in hand.


5. And two of this kids good friends came over to play. They played laser tag outside for about an hour. (Those were one of the best christmas gifts Santa has ever given.)


6. Meanwhile, the mailman showed up with something Cole has been wanting for about three weeks now. He has been saving his money for a remote control car like Jake's but someone surprised him with one in the mail! He was SO excited!


7. That night, we had a spaghetti fundraiser that one of our friends put on. It was amazing. And I am not exaggerating. I am still in awe of how many people came to support our little guy. I am so humbled by all of the goodness there is in this world. It was very touching and emotional to see and there is no way we will ever, in a million years begin to be able to thank anyone enough.


8. As crappy as the cancer thing has been, we have met some incredible people through it all that we never would have come in contact with otherwise. One of which was Jake's home health care nurse. She doesn't work there anymore, but we became very close to her since she basically lived at our house for a couple of months. She is truly an angel on earth. And Jake loves her.


9. Poor Jake was totally pooped by the end of the day, but he had so much fun seeing his friends and being around people other than his family for once!


10.



And that is that! It was a good, busy day. And I am still overwhelmed by all you wonderful people out there. So, again, THANK YOU. I know I have said it repeatedly, and will never be able to say it enough. Thank you for your love and support and all that you wonderful people do. You will never know how grateful we are that we do not have to do this alone.

End of Induction 1

Friday marked the END of Induction 1. Which means in my mind, NO MORE STEROIDS! YAY! I am ready for rational Jake to come back home. He had no chemo given to him on friday, only procedures were done. Jeff ended up taking him and I stayed home with the other kiddos. Which was good. It was nice to be able to spend some one on one time with Crew and Cole and not worry about cancer stuff for just a little bit. Jeff and Jake left for the hospital at 6:00 in the morning which was awesome. Especially considering the last few times we have had to go to the OR he has not had surgery until after 3:00 in the afternoon. For a regular little boy, no food until three is hard, but for a boy on steroids, it is pure torture! He had surgery at 8:00 and was happily eating a little over an hour later. They did a bone marrow aspirate, lumbar puncture and biopsied one of his little boy parts. We will get the results on Tuesday for everything. We are keeping our fingers crossed that he is in remission AND that he will not have to undergo radiation. If everything goes as planned, he will be admitted to the hospital for five days on Friday for high dose chemo.

Ugh. It has been a long week and it is only tuesday. I feel like the Little Engine That Could and repeatedly tell myself, "I think I can, I think I can." It has become a mantra at our house. The last week has gone semi well. A lot of ups and a lot of downs as well.

Clinic on friday went well. ANC was a whopping 2400. I am still shocked it can go from 100 to 2400 in a matter of seven days. Jake did not gain any weight which was another shocker considering how much food he is packing on. He did have to receive plasma due to some low something in his blood. (I know. I know. That explanation is awesome.) Apparently, the PEG he has received can cause his body not to be able to fight off blood clots. Whatever it was they test for was low, so he got plasma along with another dose of the PEG and vinc.


He enjoyed the game cube and ordering lots and lots of food while we waited.


We also found out that he will have to not only have a bone marrow and LP next week, but they are going to have to biopsy the testicle that the cancer was found in. It has not gone down as much as our doctor had hoped it would. If leukemia cells are found there, he will have to have radiation done. We should get the results back next Monday. I am very very nervous about this. It is one more unknown thing that we may be getting ourselves into. And it is scary.

Saturday, we had fun watching Cole in his basketball game.

We spent the afternoon outside playing soccer and baseball. My little brother is on a mission in Brazil and thought it would be fun to send the boys a slingshot. They had fun seeing if they could hit the fence with the marshmallows I allowed them to shoot. When they tried shooting with rocks, I put my foot down. I don't need another visit to the emergency room at the moment.


I even talked Jake into going on a bike ride around the block. Our hands froze, but it was so great to get outside for a bit. It was nice to feel a little bit normal for just a second. Because the rest of the time, I am not sure what is going on! I feel like I am still living in a dream and one day I will wake up from this nightmare. And then I realize it is real. And it is hard. I know it was hard last time. But I don't remember it being quite so difficult. It is a good thing I have Jeff. He is the one person that seems stable through this ordeal. I am so grateful that I have him to lean on.

As of today, video games have been officially banned due to a nine year old boy that cannot seem realize that it doesn't matter if you win or lose, it is all just for fun. Instead, we have Mr. Yell-a-Lot and Can't Calm Down. I am so tired of the word 'steroid' I want to scream. As of right now, he has only two more days of taking them. At least the fight to get him to take his meds is very rare now. Instead, he gets angry in other ways. It is so frustrating because on the flip side, he is the sweetest boy you will ever meet. He brought a random note to Jeff last night telling him how much he loves him and left him some tic tacs on his bed and has written me two valentine notes today. He can be such a sweetheart. Which makes it even more difficult to watch the not-so-sweet-Jake. I hope I don't sound horribly negative. Because things are good. We have been very blessed. I know that it could always be so much worse. I am so grateful for these four boys I get to have in my life on a daily basis. I am grateful that Jake has not had some of the side effects he could have gotten. I am grateful that my other kiddos are healthy and right now, that is all that matters.

This kiddo finally allowed me to take a couple of pictures of him without his hat on. He will rarely take it off now. His hair still has not completely fallen out yet, but in the pics you can see the spots where it is gone. It is all rubbed off in the back as well. (Funny story... we were talking about letting other people see him with no hat and he told me, "I don't care if Roger (his piano teacher) sees me bald, cause he is bald too!" Apparently he does not realize that there are quite a few men who are balding. He makes us laugh.) His little cheeks are also starting to get puffy. Not nearly as much as they did last time, but it is still a noticeable difference.