Tuesday, May 29, 2012

Wake UP!

I don't know what to think...what is normal and what is too much sleep for a kid who has been through all this and still recovering from a bone marrow transplant.  It's 2:30 in the afternoon, and Jacob is still OUT cold!
I want to go wake him up, but then what...he's bored out of his mind these days with nothing to do. It's a beautiful day outside, but he can't do all the same things he used to do on beautiful days like this and he has no motivation at all to get out of bed these days.

What the heck...it can't be good for him to sleep this much, can it?  Or, maybe it's what he needs...how the heck do I know? ...never had cancer before & never survived a bone marrow transplant before so I can't say that I know what's normal for him.

I'm just frustrated.

I want him to wake up and do schoolwork, get ahead, study his seminary lesson, clean up his room and it's way past the time he needs to take his pills now.

Hmmm...maybe I wouldn't want to wake up either if I was him.

But, I have to wake him up to take those stinkin' pills.  Have to... so I'm going... now.

Saturday, May 19, 2012

Getting read for the first ride on his "Make a Wish" Dirt Bike!

Yes, this is what you're thinking...and yes, I'm freaking out! Josh loaded him up with his bike today and they are taking it out for the very first ride!  Jacob got a fancy filter mask to wear inside his helmet and we took it to his appointment yesterday at the hospital.  The doctor was very hesitant about it and said to be extremely careful...but he okayed it!  I think he's more concerned about Jacob falling and getting hurt than breathing in the dust at this point...at least that was the feeling I got.  With the new filtering mask and his "body armor" and the helmet with the face mask & filters built in, he's pretty well protected from dirt and dust as long as he's not riding right behind someone.  Josh will let him lead the way so he's out in front and they plan to go for a nice easy cruise.  (at least that's the story I got...)

If you're reading this today, please say a little prayer for my big boys that they make it home safely! (and that they have lots and lots of fun!!!)   I really am excited for them and man I wish I was there to get pictures and video of jacob riding for the first time, but well, I just hope they are having fun and making some awesome memories!

Very happy boys.  

...and that's the bike! All loaded up in the back of Josh's truck.  It is so fancy with all the Make a Wish decals and Nitro Circus theme.  

He looks tired already and they haven't even left.  Just loading up with everything wore him out.  haha


Tuesday, May 15, 2012


Ahhh...I just had to share this amazing little song called "Swim".   I know the bells are a little cheesy but I just love it and it makes me think of Jacob and all he's been through!

This is really silly, but there were so many days when we were in the hospital together that I just had to thank Dori from "Finding Nemo" for her words of advice..., "Just keep swimming!"  I love it, so simple and yet so deep.   Nowadays, I just have to add that I really relate to Dori because I can't remember from one minute to the next sometimes! My brain just doesn't work like it used to. I'm so stinkin' forgetful and absent minded and sometimes I know my kids (and my husband) think I'm crazy.  Jacob laughs at me so much (I'm so glad he laughs...never gets frustrated or mad at me...ever) But he laughs just watching me walk around his room sometimes trying to remember what I came down to do or what we need to do next.  Did I remember to put on the little toe sticky to monitor his oxygen while he sleeps?  Did I remember to turn on the oxygen machine? Did you take your pills, did you get the IV medicine hooked up for the night, got enough water? ...how much did you drink today anyway???...not enough, drink some more! What else Jacob...don't let me forget.  Hahaha...ya it's funny sometimes.

But that's not what this song is about.  It's about Jacob and swimming for his life, keeping his head above water.  And, I love that it's about swimming because boy does he ever love to swim!  He was a little fish from the first time we put him in the water...at 2 weeks old! He loved it.  Nowadays, well, he misses it more than anything in his life that he had to give up for cancer.  It's been long over a year now since he's been able to swim and it's just driving him crazy.  He wants more than anything in the world...even riding that dirtbike, to be able to swim again.  I'll never ever forget the day he found out how long...really how long he would have to wait for them to take his "line" out of his heart and be able to get into water again.  The nurse asked, what kind of cancer is it again?  And you're headed for the bone marrow transplant? Ya, well then I would guess at least a year.  "A Year?" he asked. I'll never forget the look in his eyes as he told him he couldn't swim until it was out.  How he fought back the tears as the reality set in.  I'll never forget it, and it broke my heart. 

The cool thing that I realized is that I really think that swimming will be the one thing he'll be able to do best when this is all over and he's better.  Running may be hard for a while on his tender knees and joints, football will be tough getting back to, riding the dirtbike...well, that just scares me.  But swimming...it will be so good for him, I can't wait!  Just can't wait to see him jump off a dock somewhere or swing off a long ropeswing, dive off the high dive and just ...swim.

Can't wait for summer - and for that crazy tube to his heart with two little lines and their ugly caps to be taken out of his body so he can get more than his feet wet in life again!

Saturday, May 5, 2012

Back home...and better

It's about time I give an update to the last post.  Sorry to leave everyone hanging...I just read it and realized I never even wrote to everyone that we got to go home!  They only kept him just the one night, basically for observation and to run all those tests.  First off, I have to thank everyone who said a little prayer for Jacob and his heart!  I was so worried about that echocardiogram.  But guess what!--his heart is doing fine! The test was completely normal and he has no problem there! I'm so relieved and so completely grateful for that one little (well, kinda big actually!) gift of good news.  It's actually amazing to me considering that during his 7 months of treatment, he had high dose toxic chemotherapy drugs pumping directly to his heart through his central line.  His heart acted as the pump to distribute the chemo and so many other harsh medicines throughout his body.  Medicines and chemo that burned, scarred and damaged his lungs, but somehow left his heart alone! It baffles me, except for the fact that I prayed for his heart almost every day while he was in treatment...and I still do.  And, I know that countless other people have lifted him up in prayer every day since he was diagnosed...and still do.  ...thank you!

We were sent home on Wednesday after all his tests were completed and results showed no new surprises. They never really gave us an explanation for why he was having so much trouble with his oxygen levels, but decided to just give us access to more oxygen to help him through.  Somehow I wonder if they just sort of expected this to be the case when he tapered down low on the steroids.  They are concerned, but apparently there isn't much more they can do about it.

We came home and got the call from the Home Health department to deliver our prescriptions and new oxygen supplies.  They came and swapped out his old condenser that could deliver up to 2 liters for a new one that goes up to 4 liters.  We got a new supply of longer tubing so he can get all around the house and stay on it during the day without having to switch to a tank. (but this leaves him attached to a cord all the time...ugh!)  The coolest thing they gave us is a new "regulator" that goes on his tanks and some super small tanks that fit in a backpack or better yet, his "camel back" backpack! This has made all the difference in the world!  It's pretty incredible what a constant & sufficient supply of oxygen can do for a kid. ...and, Amazingly enough, he doesn't seem to mind at all having to pack it around with him everywhere, all the time.  (that would drive me nuts!)  I think he's just so glad to feel better that what the heck, he'll take it! He just packs up that little camel back and he wants to go hang out with friends, practice Lacrosse with Joshua in the backyard, go to the skatepark or take a walk.  The change in his energy level has been amazing. It's hard for me to see him having to wear that little nose tubing across his face and around his ears all the time, but it helps so much that I'm just grateful.

We don't know how long it will be like this for him, but we are hoping and praying that this is just a bump in his road to recovery.  We're hoping that his lungs just need some time to "adjust" to the lower doses of steroids until his body learns to start making it's own hormones or whatever it is he needs to keep the inflammation down.  We have been told that his lungs have irreparable damage and scarring that will always be there for him, but they wouldn't know how inhibiting this would be until he is completely off the steroid support.  I'm just hoping and praying that this is not it and that he will get better as he becomes more and more active and as he grows.  His lungs still have some growing to do, so we hope that the new healthy lung tissue that grows for him as he gets older will compensate for the loss.   In the meantime, we'll support him with all the extra oxygen he needs and be thankful for the world of modern medicine we live in that can supply him with it!

Wednesday, May 2, 2012

Back at the Hospital

We spent the night in ICS at the hospital last night after 5 months of being at home. We have felt so blessed to not have to come back for such a long time and coming back here just brings a flood of emotions. Just as I was starting to really see the light and beginning to feel somewhat like a normal family again. Now, the memories come back to me and I’m reliving so many of those feelings we had for the 7 months we lived here. It was so strange waking up in this room again that feels so oddly familiar. I can only imagine how it feels for Jacob. He was so upset yesterday when I broke the news to him that they wanted him to come back in to be admitted to the hospital…

We’ve been watching him closely for the past few weeks as we have been tapering his steroid dose down ever so slowly.  The docs told us that around the 10mg stage, he would either stabilize or if we were going to have any trouble, that’s when we would see it.  Well, we’ve been getting some trouble now that he’s been at 10mg for over a week. Over the last few days, his oxygen levels have been trending down lower and lower causing him to need more oxygen.  On Sunday, I noticed he just didn’t look so good and I can usually tell by the color of his face, cheeks and mouth if his oxygen is low.  I checked him and his saturations were in the low 80’s.  Being that he was awake and up & walking, this was very unusual.  We got some longer tubing on his oxygen machine and hooked him up so he could still get around the whole house and called the doctor.  Being low on oxygen during the day is not normal for him.  She said to just watch him for a few days and call back if he gets any worse.  Well, he got worse and on Monday night when I went to check on him while he was sleeping, his saturation was right at 90 while he was sleeping, but he was already using 2 liters of oxygen and should have been higher.  Within a few minutes it dropped below 90 and the alarm started.  It woke up Joshua so he came upstairs to tell me and when I went back down, it was going between 84 – 86 and still on 2 liters of oxygen.  So, I checked all the lines to be sure the thing was working and then watched him some more.  He never got close to 90 again.  Well his oxygen machine was already maxed out….it only goes up to 2 liters, but he needed more.  I took him off the machine and connected a tank for him.  The tanks can go up to 5 liters, but they run out quickly at a rate like that.  I tried 3 liters, but that still wasn’t enough to bring his sats up, so we went to 4 and that worked.  4 liters of oxygen! That’s crazy, he’s never needed that much even when he was in treatment and had pneumonia.  I decided to sleep on his couch and watch him.  The whole thing started at 4am. By the time I got his oxygen stable, it was now 6 and I had to set an alarm for 8:30 to be sure I would remember to check the tank.  They only last 2 ½ hours running at a rate that high.  

I waited until after 8 and called the doctor.  By the time they called me back around 11, he was on his 3rd tank of oxygen and the doc just said, “we need to admit him, how soon can you get him here?”  So, I started packing.  Who knows how long they’ll keep him. Maybe just watch him for the night…but I don’t know what’s going on in his lungs so no telling how long we’d be there.  I didn’t bother telling Jacob until he was awake and I was ready to go…he didn’t sleep so well either all night.

So we checked in to room 4415.  Boy, I really think these rooms are getting smaller! How in the world did we do this for 7 months? Once we were settled in, the docs came for a visit and let us know their plan.  They set him up for a chest x-ray and an MRI, but before that, they stuck a hose down his nose to suction out some mucous and have it tested. Just to be sure he didn’t have any kind of virus that could be causing the problems. …yuck! Jacob did not like that.  The chest x-ray of course was to take a look at his lungs.  The MRI…is for his legs.  He’s been having a lot of pain in his knees and ankles, so they decided to take a look and see if the steroids have damaged anything.  We knew that steroids could cause problems with his bones, but it was just another one of those “wait and see” situations.  After he was done with all the tests which took the whole afternoon, we settled back into the room for the night, put on a movie and well, we had a little slumber party!  I’ve never seen Jacob be so much fun when he’s been here. He used to always just sink down into his covers, tell me to close the shades, turn off the lights and he'd try to go to sleep.  He still does that when the docs come in.  He’s amazingly good at putting himself to sleep whenever they come in and want to talk about things...haha.  Even I can’t tell if he’s faking it most of the time.  This time has been different.  He’s been cracking jokes, thinking of pranks he wants to play should his favorite nurses come to visit and just goofing off! He’s even been sweet to his nurses and his tech saying “please” and “thank you”.  His tech last night actually called him a teddy bear! It’s really nice actually that they can get a glimpse of the real Jacob.  He was such a grouch through all his months of treatment and so depressed and it made me sad that they maybe didn’t think he was a very nice kid.  I can’t wait for him to be really all better and start looking like the handsome young man that he is and able to be himself again.  We stayed up late laughing at crazy jokes he wanted to play on everyone, watching movies and old episodes of “Lost”.  We had a few tickle fights cuz I tickled his feet just to get a laugh out of him while I was rubbing his ankles and knees.  He promised to get me back bad sometime when I least expect it…like when I’m sleeping.

So here we are, it’s morning and as usual, Jacob is still sound asleep at almost 11am.  He slept right through the doctor’s visit this morning when they came to tell us the results from all of yesterday’s tests and give us the plan for today.

The x-ray actually looks better than the last ones they have done and they think there is some improvement there. So what’s going on then? The nose culture tests have been negative so far, but they are doing some more tests and those will take a few days to get back.  I don’t think there’s anything there though since he hasn’t had any symptoms at all like a runny nose, cough or fever.

The MRI, on the other hand, had some bad news.  The steroids are taking their toll and that explains the pain in his knees.  It always amazes me how well these doctors know how to break bad news.  He’s got yet another crappy diagnosis, another new “condition”, trading one disease called cancer for a set of new diseases and conditions that may not kill him, but they'll be obstacles for the rest of his life.  They called it Osteo-necrosis.  Basically, it means the steroids have weakened his bones and cut off some of the circulation causing an area at the base of his femur to die.  Yes, I did say “die”! Can you believe that?! She ever so sweetly said, “There’s an area that we can see from the imaging that the bone is actually “dead”. So, we’ll get him an appointment with an orthopedic specialist.” What the heck does that mean?  Does it mean he will always have pain in his knees? Will he be able to run again? Play sports? What about growing? He still has a lot of growing to do…how can his bones grow if they are “dead”!?  My mind is just reeling now with all the questions. 

Cancer SUCKS!  …sorry, I know that’s not a nice word, but I can think of a lot of other words that I just won’t say.

The plan for today is to have some more tests done.  First, a Pulmonary Function Test (PFT) that tests how well his lungs are working, their capacity and how well and how fast they are able to get oxygen from his lungs into his bloodstream. Next he’ll get an Echocardiogram.  This is a test that is done with ultrasound equipment on his heart.  They basically measure how well his heart is functioning.  His blood pressure has been running pretty high lately so I’m curious for the results of that test.  Although we had the bad news of his lung damage, I’ve been happy to know that his heart didn’t get any damage through treatment.  And, though I want to know the results, I just get so much anxiety worrying about what they are going to tell me next. With the good results on the x-ray and his last CT scan which also looked better…I guess I’m a little scared they are going to say his heart is struggling too.  They have warned us that being low on oxygen, causes more stress on the heart and this morning, they explained how the heart and lungs work together to get oxygen to the body.  Please, please pray that his heart is still doing well! I just don’t think I could handle another “condition” newsbreak if that’s what is causing his oxygen levels to be so low.

Can I say this one more time…?  Cancer STINKS! (was that better?) This is such a nightmare.  I just want to wake up and somebody tell me it was all some crazy stupid year-long dream!  I actually did have a dream a couple weeks ago where Jacob walked into my kitchen and he was completely better.  I looked at him and thought, how far he has come…you wouldn’t even know from looking at him all that he’d been through.  His hair was blonde and straight…and long again.  He was built like the strong young man that he was before all this and he just looked like my Jacob again.    I want him back.  I miss him.  I just want my boy back!

If all his tests look good today, we’ll be going home tonight.  We can watch him at home and keep the docs posted if anything changes…They’ll order us a new condenser that can make more than the 2 liters his machine does now and get him a portable tank that he can carry around with him everywhere more easily than the tank he slings on his shoulder now (and never uses cuz it’s a pain to haul around).  They’ll refill his meds and let him start taking Aleve or Ibuprofen for the inflammation and pain in his knees and get him an appointment with an orthopedic specialist.   …yay  (that was yay for going home, not all the rest…bleh)