Ironically, the weeks seem to fly by. Especially when the days are counted by when we will be sitting in a hospital room next. And sitting in a hospital room we are. Jake is receiving more chemo. The drug ARA-C is given four times over 48-hours. He will also get a PEG shot in his leg on thursday. I have already wussed out and told Jeff I will not be able to be present for that one. I just don't think I can handle holding him down for a shot at the moment. He will get to come home on thursday or friday, but will be readmitted again next tuesday for about two weeks. We will then get a small break so his body can recover. The next admit date that is scheduled after that will be April 30th. Day -8 for transplant. Conditioning will begin, and May 9th will be the actual transplant day. We are ready. Ready to have this over with and we can actually begin the countdown. No more waiting will be good.

Jake did have another bone marrow aspirate today as well. They are checking to see if he is in remission yet. We will get the results on thursday, but our doctor is still concerned. His little boy parts have not shrunk down to a normal size. Which means, they are still full of cancer. And at this point, we are not sure what they are going to do about it. I kind of get the feeling that no one really knows what to do. Apparently it is pretty rare to have both a testicular and marrow relapse. It is not seen often. And it is even more rare for them not to go straight into remission in that first month. It is so frustrating and so scary not knowing what the future holds. I wish every day I could look into a crystal ball to prepare myself for what is coming next. We have had very in depth discussions about time frames and statistics. But the bottom line is Jake is Jake. He has never done what he is supposed to do when it comes to this cancer crap. And at this point, and even from the beginning, it has not been in our hands. We realize that the Lord has a plan for him. And even now, I am in awe at how many people's lives have been touched by this sweet and feisty and stubborn child that belongs to us. Both Jeff and I feel very strongly that things will work out the way they are supposed to. And right now the only thing we can do is pray. Thank you for your prayers. We feel them each and every day. And I know that Jake does as well. This is not something anyone could ever do alone and we are so grateful that we have an army of people backing us up.
xoxoxo

playtime

We were finally able to leave the hospital Friday night. Jake's methotrexate levels needed to be at .1 and that morning, when we were told we would most likely be able to go home, tested at .13. Just our luck. We waited around for another eight hours and they finally tested at .9, so home we went! I really cannot complain though. This hospital stay was by far the easiest one we have had as of yet. Jake did awesome the whole time we were there. No fevers, no pain, just lots of chemo with no side effects.


Here is Jake's nurse, Irish, showing off his glove trick. Kids: Do not try this at home! He blew up the glove with his nose and then sticks it over his whole head. He had Jake laughing every time he walked into the room. It is so nice when these nurses try to make the hospital a fun place to be. Because most of the time, it is not so fun.




Jeff had meetings all day saturday, so the boys and I had fun at home. We made green waffles for St. Patricks Day, played with playdough, and made some paper animals, (thank you Millie!!), and played outside on the tramp. We even sat in time out for awhile. Surprise. Surprise. (It took an hour or so for the three of them to decide to be nice to each other for the day.)


These two equal trouble, trouble and more trouble.


He hates when I say it, but Cole has the most kissable lips....


We had planned on going miniature golfing, but it was a little bit too windy, so we opted for bowling instead. Four boys. That are insanely competitive. It was fun, but I think we are going to need to work on being a good sport, even if you don't win. Sheesh. I guess I should have realized it starts young.

It was hard to watch Jake. I am in shock at how much strength he has lost already. His little legs are skin and bones and he could barely throw the bowling ball. It made me really emotional to watch him. You don't notice it as much while sitting in a hospital, but when you see him around other kids, it is really apparent. And it makes me so sad. We still have such a long ways to go. I hate that we have started over from square one. Although, I am so grateful that he is still able to walk. A small silver lining.


Today our little man woke up with a sore throat. The methotrexate can cause mouth sores. Again. I have heard of them going down your throat and into your stomach and I am wondering if this is what has happened. Poor guy. He is having a tough time eating again. Popsicles and ice cream. That is what he will be living on for the next few days! He will be admitted again next week to start his third round of chemo. I cannot believe we are already this far into it. It is crazy. I just keep telling myself that it will be over before we know it!

more chemo

I am stuck in the hospital again. It has been okay. My nurse has been really funny. He put a glove on his head. I watched pirates of the Caribbean, cars 2, my nurse brought green lantern for me. I have to get up every two hours to go to the bathroom. It is really annoying. I get to play video games. A lot of people have visited me. I've had lots of nurses. My friend Tommy had cancer too and he came to see me. I brought some toys up but haven't really played with them. Tomorrow my dad is taking me to see John Carter. The games up here are fun. I am ready to go home though.
Love, Jake


Inpatient. Again. Three days. For high-dose methotrexate (That one drug that has been in high demand and all over the news because of a shortage. Which is, thankfully, not in shortage anymore.) Jake has done awesome so far. Even having a nurse wake him up every two hours to go to the bathroom. No complaints. Or any kind of whining. (If you see Jake, you will have to ask him about our nurse. He drank Jake's pee. And has Jake laughing like crazy every time he comes in the room. He was too embarrassed to write about it in his little paragraph up there.) This has, so far, been the easiest admit yet. Knock on wood. But he really has done so well. And we couldn't be more proud of our little man.

patience

My mom got called to be the relief society president. And with that came her oldest daughter being coerced into helping during her lesson on sunday... which I was not thrilled with. At all. But, as much as I did not want to help, I am grateful that I was able to. Because I learned a couple of things along the way. (Why does it always seem to happen that way? Don't want to do something, and then grateful for the chance in the end.) I had the assignment to talk about PATIENCE through trials. Which is kind of a joke considering I am not patient. And I feel like I have become even more inpatient with the particular trial we are trying to survive at the moment. I do not like waiting. And that is what our life has become. Waiting in hospitals. Waiting for test results. Waiting to see if Jake gets a fever. Waiting to find the right house. Waiting to find a bone marrow match for Jake. Every day, holding my breath and waiting for something to happen. But, as I planned my small five minute talk, I began to actively think about the things that this relapse has already taught me. Number one being, don't take life for granted. Especially don't take my family for granted. I know we hear this all the time and it is a really crappy way to learn this lesson, but it has been well learned. I find myself taking more and more time to sit down with my boys and play with them instead of doing a load of laundry, or packing another box. Having Jake home 24 hours a day would not be my first choice, but it has made me appreciate the extra time that we are able to spend with him. One day these three boys will all be gone and raising families of their own and this is my one chance to do it right. And I do not want any regrets.

March: 10 on 10

1. Someone sent this kid a letter. And he was SO excited. Whoever you are, thank you. You made his day. And he has been so worried about not being able to thank whoever sent it.



2.


3.


4. If any of you are wondering what it is like to have boys, this explains it. Jeff has taught them how to tackle. It is especially fun when they sneak up on you together when you least expect it.


5.


6. Jeff's family is here visiting for the weekend. It has been good for all the boys, but especially Jake. He has ran around more today than he has since he first relapsed. It has been good to see him so happy.


7.


8.


9.


10.


We finished the day at Disney on Ice. Which was darling. And at the end, the boys were exhausted. Especially Crew. While walking out to the car, Crew was crying because his toy was 'running out of batteries'. And as soon as we walked in the door, Cole started sobbing because bear was at gigi and pa's hotel. He 'cannot sleep without him and last time I only slept two hours!' A little exhausted? Yes.

Day 10 of radiation=FINISHED!!!

This kid has been SO excited to finish his last round of radiation today! He has gone every day (except saturday and sundays) for the last ten days. Not too horrible, considering how many days others go... but enough for us to get a small taste of it. It was not his favorite thing to do, but he always went in with no complaints. (once we got in the car anyways) He will have to undergo total body radiation when they are conditioning him for the transplant. The way it has been described to us makes it sound much more brutal than this has been. Ugh. It is not something I am looking forward to.



He is feeling much better, thank heavens. We have even gotten a laugh out of him a time or two this week. He left the hospital on saturday with an ANC of 100 and on monday it was up to 3500! Amazing! So we have celebrated. We have gone to lunch at his favorite places and got ice cream and even played outside a couple of times. He tires very quickly still, but we will take what we can get at this point. I am just grateful we are able to be home and not be dealing with this in a hospital for days on end. There are so many families that are stuck in a hospital room for months... on bad days it helps me to remember, it could always be so much worse. And right now, it is good. And we are so so grateful for the good. Because there is so much of it.



He will be admitted again on Tuesday of next week for his last dose of chemo. And then round two will be over. After round three, means transplant time. It is right around the corner and will be here before we know it.

Lemonade

I know I have said it a thousand times and I am sure that I will say it a thousand more, but I am so grateful and amazed by the goodness of people out there. I had to share this picture. My sister in law just sent it to me and it of course had me in tears. I have a childhood friend that lives in Texas. I have not seen nor heard from her in over 20 years. Yes, twenty. I got this sweet email she sent to Jackie about a fundraiser she and her little girl had done for Jake. There is so much good in this world. And even though I have not seen this friend in years, I am so touched and humbled by her generosity and thoughtfulness in thinking of our family. There is something to be said about trials like this. They bring people together like nothing else can. And with all of the yucky stuff you hear on the news, there is so many more good things happening. And without all of that good and feeling like I am being supported from every which way, I am not sure we would be able to do this on our own. Because Giovanna is not the only one who has helped. The phone calls, the food, the gifts, the hospital visits, the emails, the texts, every little thing means so much more than you can imagine. So, once again, thank you.

fevers and pizza parties

Wednesday just happened to be one of these days:


We had a sad, sad boy on our hands. Jake's ANC had hit rock bottom on Monday. A big fat zero. Which means he has no immune system whatsoever. His body in return decided to grace him with big fat mouth sores, that looked a little like this:



They cover his whole mouth and are extremely painful. Which means no eating or drinking or much of anything except lying around and crying because he is in so much pain. To top things off, he started spiking a fever which topped off at about 103. Fevers can be very dangerous to him while he is undergoing chemo. If it gets to 101 degrees, we are supposed to take him to the emergency room. Jeff had to go to Logan, so I had the privilege of taking him up to PCMC. Of course his ANC was below 500 (still at zero) and they admitted him. We are still here and will be until he is fever free for 24 hours and they can get his pain under control--which has been awful. Between his mouth sores and his tummy aching, he is miserable. They had him on morphine the whole first day and now just have him on oxycodone. He does seem to be doing a little bit better as long as he has his lidocaine to numb the mouth sores and the pain meds don't run out.


Thursday, Jeff came up and I went home to spend time with the other two boys. We went sledding at the park because we finally have some snow now that winter is supposed to be getting over. Cole tried his snowboard he got for christmas for the first time and loved it. I was impressed! He did not fall down the mountain except maybe twice. He got up the first time and went straight down. It was fun to spend some time outside for a little bit! And these two little boys make me laugh. Cole has definitely met his match in the teasing department. I am pretty sure that Crew learned a few tricks from Cole.



After sledding, we had a pizza party at the hospital with Jake who had been begging for Little Caesars pizza. He was in better spirits than I had seen him for a week and was excited to see the boys. He kept telling Cole how jealous he was that he got to go snowboarding. A couple hours later, he was done and was more than ready for us to go.

There was a lot of this going on:


And Crew got to learn a magic trick from his dad. If he claps his hands, the water magically comes on!


It was nice to be able to be together as a family for just a little bit. I have a feeling that there will have to be many more of these days to come.


This morning was rough. They stopped pain meds last night, which I am still trying to figure out why, and he did not get any until this afternoon. Once they hit his system, he seemed to be doing better. He also has not had a fever at all today, so we are hoping to be able to leave tomorrow. Keeping our fingers crossed! He did need a blood transfusion again...

From the bag:

through the filter:

and into his port:

Just call him vampire Jake.

Also, we just wanted to thank those of you that donate blood on a regular basis. If you don't PLEASE do! These little kiddos need numerous transfusions throughout treatment and the more people that donate, the better. Another way to help is to sign up for Be the Match. It is the bone marrow registry. We are lucky enough that Cole was a 10/10 match for Jake, but there are a lot of kids out there that do not have sibling donors. It is easier to get on the registry than it is to donate blood. The only thing you have to do is send in a swab of your mouth. The link to the site is here if you would like to look into it. You can be a superhero like our Cole and save someones life!! How can you not want to help save these sweet little kids?