I cannot reiterate enough how nice it is to be home!  We are loving every second of it.  It is stressful at times and gets kind of hard because we are so limited on what Jake can and cannot do, but it beats being in the hospital 1,000 times over!  We have had a good week.

(Pretty sure this kid agrees)


The boys decided it would be fun to have a jump rope contest.  They are a little competitive.  Cole tried his hardest to beat his dad.  His face is my favorite.



Poor Jake.  It breaks my heart to see how weak he is.  But he tried.  And had fun. And that is all that matters.  We are meeting with a physical therapist on wednesday to see if he needs therapy.

 



Mr. Underwear Man kills me.  He is naughty and he makes me laugh.



Jake visited clinic twice.  One of the perks about transplant is you get front row parking.  Lucky us.



Jake talking to Kate on the phone.  And enjoying every minute of it:



Kind of interesting... instead of septra (one of his antibiotics), they had him do a different kind of treatment for the month.  It was a breathing treatment that takes about ten minutes.  It was interesting because they made me leave the room.  It can cause birth defects in babies even if you are not pregnant.  Seriously.  And they are putting it in my kids body.  I guess at this point I should not be so surprised!



We rode bikes to the park down the street.  Cole likes to go a little too fast for his own good.  He rode up a neighbors driveway and could not stop fast enough.  He slammed into their garage and of course made a huge dent in it.  Poor kid also hit his little boy parts.  Hard.  He was a little upset.  And thought they were bleeding.  Maybe a little too much information, but it was kinda funny.



Cole started baseball.



I think the best part of the week was Friday.  Someone got a couple of BYU players to come and visit Jake.  I am not sure if you have noticed, but our child is obsessed with BYU.  We are not sure where it came from considering Jeff and I are not huge BYU fans.  But he loves them.  All three of our boys were so excited all day on Friday.  And I will admit, it was really cool.  Two of the players came and one of the coaches.  They had the boys watch a highlite film and the two players talked to them about how Jake and Cole were their heroes.  They ate it up as I am sure you can imagine.  They gave Jake a flag that all the football players signed and had them watch a video about the importance of being a flag bearer.  You can watch it here.  It was pretty cool.  I was impressed and a little teary.  They also got hats and t-shirts and jersey's.  They were neat neat boys and it was so fun to see how excited all three of our boys were to have them come.  They were on cloud nine all night long.

day +35

We have officially been home one week.  And it has been AWESOME!  We love being home. Together.  As a family.  Jake is doing very very well.  He is still having some problems with his strength, but we know that will take time to build back up to.  I keep wondering if he would benefit from physical therapy.  We may bring that up in clinic tomorrow.  The thing that has been the most difficult is knowing where to draw the line.  We need him to be a kid, but to what point?  There are a lot of things he cannot do.  And a few he can.  But, it is hard to not allow him outside to play.  And then there are twenty five kids everywhere and who knows where each one of them has been.  It is making me a crazy person.  I think we have come to the conclusion that we will do the best we can and if he gets sick, he gets sick.  As much as we don't want to end up back in the hospital, we cannot keep him in a bubble and protect him from everything.  Jake does better when he can be a kid and live.  And he should be able to.  A part of me thinks he will get better faster if he can be a kid.  There are so many things he can't do, we are trying to focus on the things he can.

He had a clinic appointment on Monday and things look good.  His ANC was up to 900.  (The friday before it was at 800)  So we are headed in the right direction still.  Today he woke up feeling not all that great.  He has a slight fever.  It was at 99.9 this morning.  100.4 he is admitted.  We are keeping our fingers crossed it does not go up anymore.  He has been laying down all day and taking it easy.  I gave him a dose of Ativan because he was so sick to his stomach.  I didn't tell him what it was because it is not his choice of drug for nausea.  (hehehe)  It made me laugh because about an hour later he said, "Mom!  Did you give me Ativan?  I am not hallucinating, but it sure feels like Ativan!"  It is crazy how he knows exactly what each medication feels like without even knowing what is going into his body.

I don't know if you remember a little girl we met on our Make-a-wish trip named Kate.  She had leukemia as well and was on her make a wish trip at the same time.  Kate and Jake were best friends at first sight, because according to them at six years old, "we have the same kind of cancer, we both have ports, we are silly and we are the same age!"  We have kept in touch with them over the years and the two of them have formed a special bond that you rarely see in kids that age.  We have not seen them in the last couple of years, but she called Jake this week and they sat and talked on the phone for over an hour.  It was so fun to sit and listen to them.  These kids have to grow up so fast and it made me laugh to listen to the things they talked about.  I am so grateful for that sweet family.  She was the one person Jake kept asking to talk to when he relapsed.  Cancer does something to these kids.  It teaches them lessons that usually takes all of adulthood to learn.  And sometimes it is good for these little cancer kids to get together and be friends.  They have so much in common and can relate only with each other.  We are hoping to be able to see her sometime this summer.  She and Jake are already planning lots of trips they want to go on!

I also want to say THANK YOU. So so much.  To all of you wonderful people out there.  You know who you are.  For cleaning our house.  And putting food in our fridge.  And unpacking many boxes.  And painting.  And bringing dinner.  And making us feel welcome.  We are so grateful for such wonderful people we have in our lives.  We don't know how we would do this without you!  Love you all.

(I will post some pictures hopefully sometime this week.  We have some fun ones of a jumping roping contest the boys came up with.  We still don't have internet hooked up at our house.)

Coming Home

The last five days have been a whirlwind.  I don't think I have gone to bed before 1:00 and am up no later than 6:30.  We moved the saturday before Jake came home and it has been a nightmare trying to unpack and keep everything as clean as possible for him.  I wanted to share pictures of the day we left the hospital.  It was an emotional day and totally unexpected.  The day before we left, his ANC had dropped down to 200.  He was given another dose of neupogen to try and help those counts to go back up.  The next morning, he was up to 3500.  We were told that he had officially engrafted even though he needed the meds to do it.  I don't get it, but apparently his body would not be able to jump up that high unless those cells were already sitting there, neupogen or no neupogen.  I don't know if that makes any sense.  It does not make any sense to me, but there you have it.  No one won the betting pool because we don't even have a date that he officially engrafted.  Jake did earn almost three hundred dollars.  He says he is going to buy a husky with the money and name her Snowflake and call her Snow.   We have not told him he can't have a dog for awhile quite yet.  So don't tell.



Wednesday morning I got a phone call from Jake yelling, "Get up here now!!!  As soon as you get here, I get to come HOME!"  We were shocked.  We were not anticipating him coming home that day, so I dropped off Cole at a neighbors and took Crew to my moms because he was not feeling well.  About three minutes before I pulled onto her street, he puked.  Everywhere.  In the car.  It was awesome timing.  Especially considering my cancer kid was coming home in a few short hours.  I dropped him off, cleaned him up and headed up to the hospital.



We had a lot of training on what to do once we went home between nutrition, medication and cleaning and taking him places and everything else in between.  Mitch was Jake's nurse that day.  He loves Mitch.  He is another one who Jake has some history with.  Last week, when Jake was doing the pooping thing, Mitch stayed up all night with him.  Apparently they bonded.



We took our room out to the car.  It is amazing how much you can accumulate in just a few weeks.  And we had already taken a couple other loads home.



We had to do some goodbye pictures with mom and dad.  Lots of memories.



Irish came in a couple of times to see how Jake was doing and pull faces at him.  He and Mitch started joking around about when Jake rings the bell to go home, all of the doctors and nurses put on lipstick and kiss him in order to leave.  Jake laughed and giggled and kept telling them "no way!"



Jake's cancer buddy, Zach came to say hi.  (He has saved us a few times with Jake.  Best guy ever.)



We were finally able to leave our room for the first time in six weeks.



There is a bell in the hallway of ICS.  It is so fun to hear it ring.  You always know a kid gets to go home.  And we love that!    Especially considering that this day always seemed so far away.



All of the nurses and doctors gathered to sing "Happy going home day to you".



And then this sweet boy got to ring the bell.



I saw Irish walking toward me putting on lipstick and the next thing I know, Mitch grabbed Jake and Irish covered Jake in lipstick!  It was so funny!  Jake was not expecting it and was worried the whole way home he was covered in girl's lipstick!



Irish with his sexy lipstick on...



Saying goodbye to some of our other favorite nurses, (Annie)  and mom and dad pic...



It was hard to say goodbye to a lot of the nurses and doctors.  You get to know a lot of them well sitting in a room 24 hours a day and not being able to leave.  But, I will not complain and I am not the least bit sad to be leaving the hospital.  Because it is so good to be able to go home.

Jake waving goodbye to other cancer cuties...



Time to go!  Hooray!



We got home to our new house and Coletrain and Coley had made a sign to welcome him home.  Of course, the second Jake steps out of the car, he tripped on a big rock and fell and landed in a prickly bush.  He got a huge scratch up his arm and a couple of splinters.  We like to do things the easy way at our house.  Sheesh.  Scared Jeff and I to death.  Poor kid does not have a lot of strength because he has been sitting in bed for days on end.  He walked more today than he has the last six weeks combined and he was exhausted.



That night, I went and got Cole and Crew from my mom's house.  It was one of those parent moments, I will never forget when we walked in.  Jake and Jeff were sitting in the family room and they all three ran and hugged each other.  There was a lot of laughing.  And a few tears.  I am so grateful.  I will never take my family being together for granted.  The last six months have taken a toll, but we are on our back to a little bit of normal.  And that is all that matters right now.