Steroids: Prednisone - HATE them!

Steroids are horrible, nasty, evil things.  How can a few little pills transform a child so quickly and change him so completely?  He started with 140mg per day: 70 in the morning and 70 at night.  After the first month, they let him start to taper beginning with the evening dose and said it would help him sleep. So, for the past 7 weeks, we have been dropping 10mgs off the evening dose each week.  Last week we were down to the last 10 and looking forward to Monday when he wouldn't have to take them at night anymore.  Well, our farewell to evening steroids didn't go quite as planned.
With the bone marrow aspirate that he had to do yesterday, he couldn't eat anything after midnight the night before.  Absolutely nothing in his mouth after 11.  Well, that means he missed all his morning pills.  He didn't mind that, it was actually a wonderful treat for him to get to skip half of his daily 40+.  Well, you can't just "miss" steroids once you're on them.  You have to taper them very slowly because they do unimaginable things to your body and getting off them is actually very very painful.  I called the clinic last night not knowing what dose to give him since he missed his morning 70 and now it was time for his evening 10.  The answer?... take all 80 at once and go back to your regular schedule tomorrow. Huh? are you serious?? ...woah, it's going to be a long night! See, along with everything else they do, steroids give him insomnia and don't let him sleep.
Jacob had this "brilliant" idea that maybe if he took them right before he was ready to go to sleep, he'd fall asleep before they had a chance to mess with him.  Maybe he figured he would have some bad dreams, but get to sleep through the nightmare.  ...wrong.  Right around midnight, his oximeter beeped because his oxygen level was too low.  The tubing to his nose from the oxygen machine had slipped out of place.  It woke him up and we adjusted the tubing.  His "saturation" recovered but then the pain started in his back, then spread to all over and to his legs where the biggest pain settled right into his knee.  Soon he was rocking back and forth in his bed and pulling his legs up, then stretching them out, bent, straight, side, back, other side...nothing helped.  I gave him 2 oxycodone and 1 ativan.  Ativan helps with anxiety and he was beginning a full on panic attack.  His breathing got short, and fast, and heavy.  Then he started just growling and moaning, it was horrible.  I had flashbacks of life in ICS at the hospital while he was going through chemo, but even then, his fits were not this violent.  He wanted to punch something but there was nothing he could safely hit.  I offered him stuffed toys or a soft ball to squeeze in his palm.  No, not interested.  He told me to just go sit on the couch, "there's nothing you can do mom".  So I did.  He didn't want me rubbing his legs or feet now, he just wanted to be left alone. Maybe he was afraid that he would hurt me.  He was not himself at all.  I decided to go sit down and look up steroid effects and see if the Ativan would be expected to help any time soon. I sat there, feeling helpless, listening to him as he growled, and moaned and tried so hard not to scream.  Then I heard a thump...he had hit the wall by his bed.  I told him to be careful. It didn't happen again.  I'm assuming that hurt pretty bad.  Lesson learned...
Finally after 1 1/2 hours like this, he began to relax.  By then he let me rub his feet and legs.  As I did so, he seemed to finally drift off to sleep.  I got to sleep about 2am once I knew he would be okay.  I'd love to say that I slept then....but Jericho woke up at 3 so I went to lay down with him to get him back to sleep.  Slept there for an hour or so until it was too uncomfortable around 4:30 and then got in bed with Joshua since his room is next to Jacob's and I wanted to be sure he was okay.  I woke up again at 6 and tried sleeping in my own bed next to Josh, but he had to get up at 7 so that didn't last long and I gave  up trying by 7:30.  I wish I just didn't need sleep.  It seems like more stress trying to get it than to just learn to live without it.  I know that's not true, but when virtually every night goes like this one to some degree...you learn to live with 2 or three hours of sleep and just keep going.

When September Ends

September is behind us, transplant behind us.  September will forever represent the pain, the hope, the wait of the transplant that saved Jacob’s life.  It almost feels like a dream now, looking back, it’s hard to believe it’s really over and although it seemed to drag on and on…somehow it amazes me how fast it all seems now that we are home and the worst is behind us. …or so I thought.

October: Trick or Treat? Definitely just a trick, a joke, a false hope and shattered light at the end of our tunnel… October came and sent us home at last.  It should be forever symbolic of triumph…a battle won, a time to celebrate.  Our plan: get home, get our lives back, be together again as a family…Jacob looked forward to finally getting his “Make a Wish” wish!  He was so happy to be going home and we all just knew it was going to be all uphill from here.  We were so wrong.   We had exactly 1 week at home before the rug was yanked out from under us and landed smack back into ICS for just about the whole rest of October.  October promised recovery…but broke the promise and reminded me that Jacob has a long road ahead of him before he’ll be himself again.  Will he ever be himself again, will he ever be the same? Somehow,  I’m realizing he won’t be.  I believe that with all my heart that he will get his strength back and he’ll recover from this completely…I have to believe that, but right now it’s hard to believe.  It’s hard to even remember who he really is…where do I find that image to cling to?  I need it so desperately right now, but pictures make me cry. I miss the old Jacob, the real Jacob.  Cancer is a theif!  He’s already grown so much since all this started.  He’s grown and changed in so many ways.  Somehow he just isn’t a little boy anymore, he’s matured so much. He’s older and wiser…wiser and more “educated” than any boy should be at his age.  No child at any age should have to wake up every day and have to fight to defeat death, stare it in the face, smack it on the cheek and stare it in the eye…as close as they can take you without letting you go there and then fight his way back to life, day after day after day.  You just can’t do that and expect him to ever be the same innocent, naïve, happy, outgoing and optimistic child that he was before.

Home again was October 28^th.  Finally we were able to go home, once again…hopefully for the last time…hopefully we’ll never have to go back to stay in the hospital overnight.  The 28^th was a Friday.  They asked us to come back on Monday, the last day of October…yeah, on Halloween for an appointment check up in the clinic.  It didn’t feel like Halloween and we weren’t interested in costumes, but Jacob was already unrecognizable…no costume needed.  The steroids were working, doing their stuff and the side effects were showing their nasty head.   The steroids cause him to swell unnaturally.  His whole face is twice the size it used to be…and it’s not because he’s finally eating.  He’s got a double chin and his cheeks are so swollen that they actually hurt!  His belly is starting to swell, and his ankles and feet look worse than mine did when I was 9 months pregnant and I couldn’t wear my own shoes.  The anti-rejection medicine causes rapid (dark) hair growth…everywhere!  Combine that with steroids and you get a complete makeover.  Thick black eyebrows and eyelashes have grown where he once had blonde and on his head has soft black stubble.  The tips of his ears have grown fuzz and of course, his upper lip.  Normally, a 14 year old boy would be excited to see fuzz growing on his upper lip and he’d be excited about his first shave.  I’m sure I would have been sneaking by the bathroom door hoping to get a snapshot of that. But not for this boy…this fuzz was not welcome and not normal.  So in short, we didn’t need a costume for Halloween, you wouldn’t recognize Jacob if you saw him walking down the street these days. 

Are they worth it? The steroids with their nasty side effects are supposed to give him back his lung capacity, reduce the inflammation and stop the immune attack.  On this day, he had to do a Pulmonary Function test.  He’d done one of these once before…just a day or so before going in for his transplant.  To do this test, he goes into a chamber about the size of a phone booth.  In the chamber is a tube that he has to breathe in and out through.  This time his nurse was dressed in a Sponge Bob costume and it was hard not to laugh at the goofy costume with Sponge Bob’s big eyes strategically placed over her boobs.  Jacob did an amazing job not staring.  The boobs are actually a perfect place if you think about it…just look at Sponge bobs face next time you see him and then imagine that square body placed on a nurse’s torso wearing shorts and tights…where would you put his big round eyes?  Her assistant was Dorothy from the Wizard of Oz.  Ok…so they ask him to suck in as deep as he can for as long as he can until he can’t possibly get any more air in and just when he is about to pass out, he has to blow as hard as he possibly can for as long as he can.  All this time you’d think those nurses (in the sponge bob costume and Dorothy) were training to be football coaches.  Yelling at him at the top of their lungs screaming, “DEEP BREATH, DEEP BREATH, HOLD IT HOLD IT HOOOOOLLLLD IT!”  and then “okay now BLOW IT OUT , HARD AS YOU CAN KEEP GOING KEEP GOING….”  Really…she was LOUD!…(really hard not to laugh now)  Dorothy and Sponge Bob screaming at him, coaching him to breathe.  Anyway, they are pretty tough on making him work very hard on this test and he was completely exhausted by the time we finished. 

The test tells us his lung capacity.   He was looking pretty good, at least average before the transplant.  As I sat watching him do the test today, here’s why I wasn’t laughing.  I thought back to the last time.  I remember what the screen looked like the last time.  There’s a line across the middle of the chart and I’m assuming it’s sort of a middle of the road average mark.  Jacob’s line was far below it. No matter how hard he pushed, he couldn’t get his line close to that one.  I remember where his line was on the graph before…the line that showed his “capacity”, his pulmonary function. It was above that average mark.  I wondered just exactly how much different this test looked.  I asked if I’d be able to compare the two.  The nurse said that would be interesting, but didn’t offer to let me see the last test results.  I asked again when we got upstairs to clinic, but Hillary just said, “That would be pointless, we know he’s nowhere near that level, we know what it used to be, but now we just have to focus on where he is now and where he’s going from here.” Okay I said, I guess that makes sense…there’s that optimistic way of coping with this.  Just take what we’ve got and go with it.  It is what it is and there’s no changing what’s already been done.  We have to start from today and go forward.   …okay, ya, we’ll do that…whatever you say. After all, you have experience with these things and we don’t so we just have to listen to your advice and swallow hard, cope with it and do our best to accept it.  …somehow, I still want to see that other test and compare the two side by side.  I want to see exactly how much “capacity”, how much “function” they stole from him.  I want to know. 

They’ve got so much more information about my boy than I’m allowed to know.  It doesn't seem fair. But without the medical knowledge, training and experience to understand all this, I don’t get to know everything.  Even with as much experience as I've had taking care of him through this, by his side through this journey, soaking it all in…there’s still things I don’t get to understand and they don’t explain to me.

Monday’s appointment gave them more information: he's got another funky and dangerous virus.  So, we got a call on Tuesday that he’d have to come back in on Wednesday to get a new IV medicine and a transfusion that he’d never had before. It’s called “IVIG” and it’s another blood product…a first for Jacob.  It’s just amazing how many people have contributed to his survival by donating their blood!  One of these days, I plan to count all the transfusions of red blood cells, platelets and plasma he got and I’ll add that to today’s IVIG infusion.  The IVIG makes the number un-countable because it’s a product that they get from mixing the antibodies of hundreds of different people’s blood.  When they checked Jacob’s labs, they found that he was positive for CMV (cytomelagovirus).  This is a really common virus and they say about 80% of people have it.  In healthy people with healthy immune systems, it’s not a problem. Since we never get rid of viruses, after a CMV infection, it just hangs out “dormant” in your body for the rest of your life and your immune system keeps it from ever getting us sick again.  Sort of like when you get Chicken Pocks and develop an immunity after. Well, when your immune system has been knocked out like Jacob’s was, then CMV can “wake up” and wreak havoc on people with weakened immune systems.  Oh and yes, it’s life threatening if left untreated without an immune system.

Just when I think the worst is behind us and we won’t have to fear life threatening conditions every day, I’m told he’s got another “life threatening” condition.  “But don’t worry…we’ve got medications for that. We’ll keep it under control, we’ll monitor him closely, we’ll treat it if necessary, we can save him from that.”  It’s crazy how we just take it. Just accept another “condition” and go with it, keep going about our day, add another medication to the list and pray that it works exactly like it’s supposed to…all the while, waiting for which ones of the many side effects he will be dealt in the deck of side effect cards. If he gets handed a bad one that he just can’t handle, he has to take another card from the other deck, the medication stack. He gets another medication to offset the side effect card…and hopes the side effects to that one are a little more bearable.  It just doesn’t make sense...but we don’t have a choice.  

Home Again!!

We are HOME! I just have to say this quick because there is so much to do...but I wanted everyone to know he is home and doing great!
His lung x-rays have been progressively BETTER every day! Thank you all so much for praying for that miracle...I truly believe this is a miracle.  He has been on room air, without needing his oxygen for 48 hours now...even while sleeping!
I asked the radiology department if I could get copies of some of the x-rays and they gave me 3 cd's with ALL his x-rays, CT's, MRI's and all imaging they've done for him!
One of these days when I have some time, I'm going to try to make a slide show of the last 17 days of x-rays. It is really amazing to see the improvement from day to day since he started the steroids.

His appetite is back!

Today it has been two weeks since we came back to the hospital to stay in ICS after our one wonderful week at home.  I keep thinking about the Sunday before we came back when I was tidying up my room and I actually unpacked my hospital bags.  It felt so good to put my hair dryer under my sink and my brush in the drawer along with my makeup, lotions and that toothbrush!  I threw out the extra toothbrush since I’ve had one for home and one for hospital for the past 6 months.  Yes, I really believed that we were done with hospital stays…silly me.  Of course, I forgot my hair dryer at home the last time I was at home for the night and then came back to switch with Josh. This morning, after spending the past 2 days with flat hair & looking like I just woke up all day long, I was so thankful to be able to look on the board and see who I know that’s “in” with me and ask to borrow a hair dryer.  I went and knocked on 4401 because she’s on the same hall with me just two doors down.  She had just gone to switch with Daddy. So, I knocked on 4420 and she was happy to loan me her hair dryer.  …now I feel presentable, haha.   It’s nice to know people around here.  …Sad, but so nice.

Jacob seems to be sleeping all the time these past 2 days.  I don’t really know what to make of it except to just hope that he needs sleep because his body is healing.  I also worry though, because I know how hard this is for him and I hope that he’s not just depressed and discouraged.  He has every right to be tired, but it so hard for me not to worry.  Sometimes I sure wish he was more expressive and could talk to me about his feelings more, explain to me just what he’s going through and help me understand and I could help him deal with it all.  But, he’s a boy…he’s a teenage boy, and he doesn’t talk about much of anything.  When he does bring something up, he wants a quick, direct answer and then he wants move on and get back to his movie, his game, his breakfast or his nap…whatever it is, is much more interesting than talking for him. …oh well.

Speaking of Breakfast, being on steroids has done some amazing things. The first of which is to give Jacob an insatiable appetite!  It’s really kind-of funny to watch, but mostly it is so refreshing to actually see him eat.  This morning he ordered a “bacon, sausage, egg and cheese English muffin sandwich”.  You’d think that would be enough, but he also ordered waffles with butter & syrup AND a plate of hash-browns!  The most amazing part is that he ate ALL of it except for one of the waffles.    He actually asks for food before he even opens his eyes and sometimes I look over at him and he’s chewing something while his eyes are still closed! Yesterday, he fell asleep while eating his bacon, sausage, egg & cheese muffin sandwich.  I should have taken a picture…

The hard part about the appetite is that he’s super hungry all the time, but he craves really heavy stuff like sausage, bacon, cheeseburgers, fries, nachos…I think you get the idea.  From what I hear from other moms with kiddos on steroids, this is totally normal and all their kids crave really high fat, greasy, crunchy, salty foods.  The part that worries me is that his poor stomach is just raw right now besides the fact that it’s probably shrunk quite a bit since going through all this.  He eats & eats and then he’s nauseous right afterward.  Then, he asks for anti-nausea meds so he won’t throw up and those make him really tired.  Since he needs to get up and walk around in order to drain the fluids in his lungs, this makes it really challenging.  The doctor explained this morning that his digestive system doesn’t really work well right now because of transplant.  He isn’t able to absorb the nutrients well and he’s not really digesting it well either so it seems to just make him feel sick and go right through him.

So far, the steroids have made him a little bit moody, but really not too bad.  Mostly, he is frustrated over the whole thing…but I would expect him to feel that with or without the steroids.  I think the feeling is just intensified by them.

The best news is that they seem to be working very well.  This morning’s chest x-ray looked really very good!  I am going to ask for copies of these x-rays because the contrast between the ones in the beginning to the most recent is amazing.  I hate that he has an x-ray every single morning and gets exposed to that radiation every day, but then I think of the kids that go to radiation therapy and my heart breaks for them…and then I can’t complain that all he gets is a picture taken. 

His drainage output from the chest tube has been decreasing a little bit each day.  For three days he drained 110 mls each day and then he dropped to 100 and yesterday it was 90. When he gets down to draining around 50 mls in a 24 hour period, they will take out the chest tube.  He’ll then need a day or so to recover and heal from that before he can go home.

We can hardly wait!...

Updates & Improvements

Don’t quote me on this and don’t be too disappointed if I can’t follow through, but I’m going to try to update more often. Sometimes, my updates will be very short but I won’t wait until I have a ton of stuff to say before I post.  I hate the thought of so many people who love Jacob checking on here day after day and not finding any news.  I have met so many families up here in the hospital with kiddos fighting cancer alongside of us.  I love those kids so much and I get very emotionally wrapped up in their fights.  Somehow it helps me deal with Jacob’s battle.  Knowing we are not alone sadly brings me comfort.  It also somehow stops me from obsessing over Jacob’s struggles and difficulties.  There have been many times, many sleepless nights when I wonder about one of those kiddos and wish I could know if they are okay.  Sometimes it takes many days or weeks for the moms to find the time and the strength to write about their struggles and it’s torture to wait for those updates.   I’ll try, no promises, but I’ll try to do better, even if it’s just a sentence or two.  It’s so comforting and encouraging to me to see how many people are following Jacob’s story.  Thank you for reading.

It has been 12 days now and we’re still in the hospital with Jacob.  This morning, the doctors came to see him – as they do every morning – and reviewed his x-rays and his CT scan from the first day with me.  They were pleased to say that they are seeing big improvements from when he was first admitted.  This is so encouraging and very much what I needed to hear today. 

Yesterday, Jacob went for a walk down to radiology for his x-ray and afterwards, he took a walk outside with Josh.  Later in the day, Aunt Wendy and his two cousins Austin & Makayla came to visit.  They read my blog and decided to take me up on the invitation to come do the exciting walk around ICS with Jacob! They all decided that the 4 corridors of ICS were not enough so Jacob took them outside the unit and across the big walkway to the University cafeteria.  They did a lot of walking and it made a huge difference! When the Dr.’s came this morning, they said “keep it up” and “do some more!”  They said the walking yesterday is the biggest reason for the improvements they see.

We just got back from downstairs for another x-ray.  I’m actually looking forward to seeing what the doctors have to say about it.  I’ve been watching his scans every day and now I’m beginning to see the subtle differences and learning what to look for.  It’s a whole new education for me – one that I never wanted or expected to get, but honestly quite fascinating.  So I’ve learned that black areas in the lungs on an x-ray are good, white areas are bad.  When we came in, most of Jacob’s lungs were white, or light gray and there were a lot of white stringy looking lines all over the lungs.  The stringy streaks are still there, but the space in between them is black.  Black is air!  All those areas that were white especially in the lower right lung meant that Jacob was not getting any air in that area.  Those areas are darkening and the upper parts are black.  There is still a section in the lower right lung that is very light gray/white so that’s the part we’re working on. 

 

Plan for today: more walking, more deep breathing, more practice on the incentive spirometer gadget.   

explanations...

I finally took a moment to read over my last post.  I was feeling bad for writing so angry and scaring everyone.  After I wrote it, I had several people calling me crying and friends who posted on facebook or sent me messages of sympathy.  Were my words that upsetting? I really didn’t mean to scare everyone. So, I read over the whole thing thinking I must have said something that made everyone think he was dying or needed a lung transplant.  I thought I should apologize. …  But, after reading through it all I have to say, that’s just what I felt at the time.  I was scared. I was angry. I was worried and I was bitter the day I wrote that post.  This whole thing is so stinkin’ hard.

Instead of saying sorry for worrying everyone, I will say thank you.  Thank you because instead of just worrying and crying over this whole thing, you prayed.  I know that you did…because I felt it.  I know that you not only prayed for Jacob, but you prayed for me.  Some of you wrote me a note or left a comment to say that you were praying and some of you called to tell me you were thinking of us and praying for us.  But hundreds more were also praying…and never told me so.  I just know.

The optimism I feel cannot be explained. I can barely find the words to express what I feel right now because the emotions are so mixed. I’m still scared, angry, bitter, and it’s mixed with content, peaceful, …I don’t know, tired maybe?  Yes, definitely tired…always tired.  I just know it will all be okay.  The very next day after we received the news about Jacob’s lung damage, I remember wondering why I wasn’t freaking out about it anymore.  Somehow, I felt peace and I was functioning again.  There’s only one explanation for me and that is through the power of your prayers and the love of my savior who once again strengthened me.  “I can do all things through Christ who strengthens me.”  …these words are true.

In addition to the answered prayers on my own behalf, I know that part of the peace I am feeling now is due to the miracle that is happening in Jacob.  I really don’t understand what Pulmonary Fibrosis is or how it is affecting him.  (I’m tempted to google it some more and understand it more deeply, but I don’t dare go there again)  Instead, I’ve decided to go back to how I have managed to cope with all of this and that is to put it in God’s hands and take one step at a time.  The google search could tell me all kinds of things about this stuff, but it can’t tell me the most important thing of all and the only thing I really want to know.  That is how Jacob is going to do with it.  Google can’t tell me how Jacob’s lungs are going to respond to the steroids, nor can it tell me how he will do with this over the years as his body grows and his lungs continue to grow.  Nobody can tell me that because nobody knows, except the Lord.  What He is telling me is to trust Him and that Jacob will be okay.

One thing I do need to mention is that whatever has been done to Jacob’s lungs is done and it’s not going to get any worse.  It’s not like he’s doing anything or being in an environment that is going to cause him further damage or progressively worsen this condition.  We know that the chemo caused it and the first treatment regardless of what the cause is would be to stop whatever is causing it.  Well, we did that on August 24 when he got the last dose of chemo, Almost 2 months ago now. 

Already, we have seen great improvement.  Today at around 4:00, he took off his oxygen and stayed above 90 without any help at all!  He stayed off of it until about 7:30 when he started falling asleep.  As he drifted to sleep and his breathing slowed, he dropped a little bit so we put him back on the oxygen. He is sleeping right now and has just .5 liters of oxygen going.  This is the best it has been in over 3 weeks!  Perhaps the steroids are working? Perhaps the exercises are working? Perhaps the prayers are working.  I’d say it’s a combination of all of the above working together.  Anyway, it sure makes me feel good.

Thank you, and please don’t ever stop.  Just knowing there are people out there who think of Jacob every day, who love him so much and who remember to still pray for him after all this time and through this long battle…just knowing this brings me hope, fills me with peace and strengthens my own faith. 

Side Effects

So we’ve been back in ICS at the hospital for 6 days now wondering why Jacob still needs so much oxygen.  He doesn’t have a fever, he’s not congested, he’s not coughing.  

His oxygen levels just drop if he takes off his oxygen for a minute.

From the look of the x-ray and the CT scans, the docs decided that they needed more information to find out why his lungs look the way they do.  Apparently there’s a lot of things that could cause them to look like that…anything like infection from bacteria, fungus or a virus to simple inflammation or Graft vs. Host to even Leukemic cells or other cancers in the lung! 

So they started out with a Bronchi alveolar Lung Lavage.  (Lung wash) This is done by squirting a little bit of saline down into his lungs and immediately suctioning it back out in hopes of catching some of the gunk in the lungs with the suction to use for testing.  This test went well and they got plenty of “stuff” to study.  -6 days later, nothing has grown.  This rules-out the possibility of infection.  So we’re not looking at bacteria, fungus or virus in there.  That leaves the lung tissue to look at…

The next day after the Lung washing/suction procedure, they decided to go ahead and do the biopsy.  On Friday night, they took Jacob down to surgery, sedated him and cut three incisions into his side.  Two were for cameras and one to grab a snip of his lung tissue.  Once they got in there, they decided to go for two snips.  The surgeon came out to talk to me and explain everything as soon as the procedure was done, while Jacob was still in recovery.  He said he decided to take two snips of tissue to send one over to micro-biology to further test for infections and be completely sure they weren’t dealing with that.  The other sample went to pathology to study the tissue and look for different kinds of inflammation, cellular makeup and other stuff to rule out cancer. …cancer? Really…? That word just isn’t fair.  I know it’s unlikely Dr. but I really don’t want to hear that word! 

Ok, let me put your mind at ease…It’s not cancer.  There’s nothing like cancer in there at all.  The Docs did it really just for peace of mind and I appreciate that because I have to admit that it was on my mind.  It will always be lurking there in the back of my mind. 

So, the samples went out on Friday and after a weekend of professionals studying pieces of Jacob’s right lung, the Nurse Practitioner of the Bone Marrow team came to talk to me on Sunday night to say they have a “preliminary guess” as to what it might be and it looks “drug related” or “drug induced”.   (would you believe I almost looked at her to say, “Jacob has NEVER done drugs!”…haha)  What she meant was that the chemo may have caused damage to his lungs. 

I got to go home that night.  Josh called and offered to come spend the night with Jacob so I could go home and be with the kids for the night.  I went home and switched with him so he could head up and be with Jacob.  When I walked up the stairs, I saw him leaning over the toilet with a scrub brush, rag and a bottle of disinfecting spray!  Josh and Joey had completely cleaned the house for me.  Joey was just finishing up the kitchen when I got there.  Floors swept & mopped, dishes done, countertops wiped down…amazing job for  a 9 year old! I was so glad and thought I’m really going to try to relax tonight, get some sleep and enjoy this night with my boys at home.  …but I was nauseous and sick to my stomach.  I got diarrhea (did I just share that with the whole world? ..eeew, sorry world) 

By the time I started feeling better and the kids were sleeping, I began to go over the “preliminary guess” in my mind and I couldn’t sleep.  I got up and STUPIDLY Googled “chemotherapy lung damage” –stupid.  Can I give you all a word of advice? If your child is ever diagnosed with cancer, don’t ever “google” anything cancer related!  Of course, I was almost to tears reading about chemo side effects, looking down the list of drugs that cause lung damage and counting all the different ones I recognized because Jacob had them. 

I decided to call the Bone Marrow Doc on call.  If I couldn’t sleep, why should she be sleeping?  They said I could call anytime and no question is a silly question to them.  So, I called.  I apologized for calling so late and then asked, “is this Interstitial Lung Disease?  Is this going to be permanent? Is it reversible? Can he reverse it? Will he be Okay?....ugh, I asked a lot of tough questions and then asked, “would you tell me if it was bad?”  She said, she would be straight with me.  “Elizabeth, I have seen a lot of bad things happen to these kids and talked to a lot of parents.  We’ll tell you if it’s bad”.  So, I promised her that I’d go try and get some sleep and that’s what I did… I tried.  –Sleep is so overrated when your kid has cancer.  I give up.  I just wish I could learn how to function without it! I hate trying to sleep when my mind is spinning like that.

In the morning, I got the boys off to school and John stayed home with Jericho.  I was back to the hospital by 10am. ­­ Jacob had just come back from his morning x-ray.  Soon after I got there, the Docs had finished reading his x-ray results and the nurse came in to check his chest tube collection/suction tank to put him back on the suction. (they had sealed the tank to just let it drain on its own instead of suctioning out fluid).   The doctor came to calmly tell me that his lung was collapsed.  Collapsed…seriously? 

They said it so calmly like it really wasn’t any big deal.  

“It’s just collapsed in a small area around where we did the biopsy. It’s just weaker there since the procedure and for whatever reason, some pressure built up and caused that area to collapse. We’ll have to leave the chest tube in until it reverses.  The good thing is that we’ve got the tube in there and the treatment for a collapsed lung is a chest tube…(smile).”  

Hello!!! He wouldn’t have a collapsed lung if we didn’t have to cut into his lung and stick a hose into his side, now would we?!!  -I didn’t really say that, just was thinking it at the time.  She must have read my mind because she then said, 

“Well, we have caused this from the biopsy, but it was very necessary to  learn what’s happening. Now we just have to work on fixing it.  It’s common with lung biopsy, he’ll be fine. Just get him up as much as possible and tell him to breathe deeply to reinflate it.”   

…hmmm, sounds simple enough. Let me stick a hose in your side and then you try to breathe deeply lady. 

Well, Jacob doesn’t have a choice.  He’s got to get up and breathe deeply so I have my alarm set for every ½ hour now to remind me to make him do his “lung exercises”.   He also has to get up at least 3 times a day and do the super exciting walk down all four corridors of the ICS Unit. We start in A Pod, then B Pod, C pod and the ever fun D Pod …and then it’s back to his room…Yay!!! Sounds like fun huh?  You should come try it with us sometime, it’s a blast.

Now comes the rest of the news for the day.  So after the morning news of the collapsed lung and the wondering about possible permanent lung damage and loss of lung capacity, our fears were confirmed with a new diagnosis.  About 4:00 today a whole team of Docs came in to the room to tell me that they had results back from the Mayo Clinic in Arizona that confirmed their suspicion.  “It’s called Pulmonary Fibrosis”. 

Turns out the high doses of chemotherapy drugs, namely Busulfan and Cytoxin that he got during the transplant have damaged his lungs and caused scarring.  The lungs are now inflamed and his new wonderfully hard working immune system is sending droves of white blood cells in there to try and fix things that don’t look right. Well, they can’t fix this so they are just accumulating in there and hanging out trying to get something done.  Since they’re not able to repair this damage, they are just taking up air space in his lungs.  …sorry guys, thanks for trying.

So, the treatment for his Pulmonary Fibrosis is high doses of steroids.  ….Gee, I wonder what side effects those are gonna cause?  The idea is that the steroids will work to reduce the inflammation in his lungs and suppress his beautiful, hard-working brand new immune system that he borrowed from Jericho. Dang-it!  I thought the treatments that make him sick to make him better were behind us?

…Stupid Cancer.

 Please if you’re reading this, say a prayer for Jacob tonight.  Please pray for a miracle that will heal his lungs and reverse this irreversible damage that is in there.  A sweet friend of mine and fellow cancer fighter gave me a hug and whispered in my ear the morning after Jacob’s leukemia diagnosis in April while he was in surgery having his line placed into his heart.  She said, “It’s okay to ask for miracles”. 

Will you join me in asking for a miracle this day?

Jacob is a fighter, but he needs strength to do that.  He needs breath to live his life the way he was made to live it.  Am I selfish? Am I being un-appreciative? Why do I feel greedy  to ask that my son can survive cancer and have his lungs too?  Why does it feel like so much to ask?  There was a day that all I prayed for was for him to live and I’d accept whatever he had to do in order to do that.  I have accepted that he would be sterile, his growth may be slowed, he may not be as strong and his bones may be brittle, he lost all his hair (sooo minor), his skin was burned, it’s dry, itchy and may stay that way…what else? Dare I say I’m okay with all of that?  Why do I have to accept it all? Just swallow hard and live with all this that’s being stolen from him.  His first year of high school, his entire summer, the upcoming winter and snowboarding season…just let it go.  I’m tired of this.  I’m so done with all of this.  I prepared myself for 3 rounds of chemo and a transplant that almost killed him.  He survived that, we celebrated, we’re ready to move on.

Please, pray that we’ll be able to move on and that he can live his life to it’s fullest, breathing deep the fresh air on this beautiful earth doing all the things he loves to do.  Is that too much to ask?

Re-admitted to the hospital.

October 8th was Jacob's 2nd post transplant clinic appointment.  I packed up his meds for the day and a little lunch box with some drinks and snacks and brought his IPad & charger to keep us occupied during the visit.  Clinic appointments can take a long time and I was working out the kinks for our new check-in routine.
I also brought our Blockbuster movie to return on the way home and we talked about what we wanted to do on the way home while we were still out in the car...

On the way to the hospital, Jacob was pretty sleepy and tired.  I had woke him up just before leaving so I wasn't too worried about it.  He needed some time to wake up & he hadn't eaten anything yet.  We arrived at the hospital & on our way through the revolving doors at the front, he asked for a bucket.  I had left it in the car so he said he thought he could make it upstairs and we'd ask for some anti-nausea med when we got up there.  We checked in at the front desk of the clinic and waited about 15 minutes for them to call his name. 

The first thing they do is check vitals so we headed over to that area, checked his weight, height and blood pressure and then they hooked him up to the pulse-oximeter.   ... 84. It needs to be above 90.  The nurse asked him to take some deep breaths and when it didn't work, the number didn't go up... she sent us back to his room and hooked him up to an oxygen tank. Jacob just laid down on the table, put his blanket over his face and tried to sleep through the rest of the appointment.  He was exhausted. (not suprising since he had been without sufficient oxygen for the last hour!) Then the doctors came back to see him and asked how he was doing at home.  I told them that he had gone from needing 1 to needing 2 liters of oxygen at home and that once we got a pulse-oximeter set up at home and I was able to check him, I found that he was dropping oxygen levels even during the day while he was awake.  There was a point on Sunday that he had dropped all the way down to 74.  This was a little alarming so they asked some more questions and rather than giving him the anti-nausea med that he asked for, they said we will hook him up and give it to him in his room over in ICS.  

Huh? ICS? ...are you admitting him? You got him a room already? Seriously??? Yup, he was being re-admitted to the hospital to run some tests and stay on oxygen. They ordered a CT on his abdomen and his chest to see his lungs.  

Well, we assumed that we'd just have a comfortable bed and a TV for the day while they got his tests scheduled, done and then we'd be headed back home.  ...wrong.  We were in for the night, but maybe...just maybe we'd be able to go home in the morning if all the tests came back good.  I was counting on that!

Morning came with orders for more tests.  The radiologist from the night before had failed to do the CT they asked for and did an X-Ray instead.  The Docs still wanted the CT so we waited out the day to get back downstairs for that. ...surely they'd let us go home then, right? --wrong again. 

By Wednesday evening, the nurses & doctors had results from the CT's they had ordered.  Although the abdominal CT checked out ok, the Chest one was really bad.  He had stuff all over both of his lungs and his right was worse than the left.  It didn't look like typical infection, but it was real bad and he was in no condition to go home.  This was dangerous and it could turn bad quickly... so they said we'd be staying for at least a week while they wait for results, develop a treatment plan and hope to get him a little better before he'd be able to leave. 

It's day 6 now, Sunday the 16th.  I'm glad we brought that IPad, and the charger.  It's been the #1 source of entertainment, distraction and time passer while we wait. 

I learned an important lesson the hard way though... Never, ever, ever leave the house with Jacob without an overnight bag, Jacob's blanket and a cell phone charger.  Oh, and don't plan on returning Blockbuster movies on the way home or making any important plans & appointments for later in the day.  I'll just plan on packing up a stay-over bag and leaving supplies in my car from now on. 

Finishing up round BMT

I can hardly believe it’s almost been a whole month since I updated Jacob’s story.  When I started, I hoped to write every day and then decided weekly updates would be more realistic.  Time sure flies…even when you’re not having fun.

I’ll try to fill in the spaces and catch up from close to where I left off.  So much has happened. Ups and downs…

On September 20, I went home for the night and woke up with a scratchy sore throat.  6 months of not sleeping, over doing it and stress, worry and fear had finally caught up with me. I decided I better stay away from Jacob.  It was torture for me to not be able to go back and be with him in the morning.  Josh missed work and stayed with him for the next couple of days, but had to go back to work after a few and it got complicated.  I drove John up to the hospital in the mornings so he could spend the day with Jacob while Josh worked and then I picked him back up in the evenings.  Driving to the hospital, knowing Jacob was up there and I couldn’t go in to see him was so hard for me.  After several days, Jacob started texting me every night and every morning to ask if I was better yet and when I could come back.  He begged me to come and promised that he would wear a mask the whole time and if I also wore a mask, he would be fine.  I just couldn’t do that because even if that worked for us, we have to remember all the other kids in ICS and I just couldn’t put them at risk.  It was really hard for us, all the way around.
            The good thing about being sick for those 2 weeks was that I wasn’t really too sick to not be able to do anything.  Although I couldn’t be with Jacob, I was able to keep myself busy and work on so much that had to be done.  As I realized how much needed to be done before Jacob could come home, I wondered if this was actually the Lord’s way of helping me get these things accomplished.  I’m sure He knew the only way He could tear me away from Jacob was to allow me to be just sick enough that I wouldn’t be allowed up there. Each day I prayed that I could get better fast and that Jacob would be Ok without me, but I thanked my Heavenly Father for the strength that I felt and all that I was able to do at home to get ready for him.

           My sweet friend Renae came all the way from Elko Nevada to help me get the house ready.  She brought her Bissell carpet cleaner and we did the carpets in Jacob’s room and the higher traffic areas in the house. We washed all the walls and the ceilings, the kids scrubbed the baseboards and we disinfected every surface in the house.  We took down the blinds and washed each slat, scrubbed the windowsills and vacuumed out dust in every corner with the shop-vac.  Under the fridge, on top of it, under the stove and microwave behind couches, bookshelves and under beds, we cleaned.  My vacuum cleaner broke the first day she got there.  Renae headed straight to the Oreck store to fix it only to find out it was “over the hill” and not reparable.  Well, my sweet sweet friend decided we had to have a good vacuum cleaner so after negotiating with the store, she got a great price on an almost new refurbished 2010 Oreck vacuum and bought it for me!  The new one came with Hepa-filtered bags and worked so well that it was actually fun to vacuum all the while knowing that I wasn’t spewing dust into the air.  I called the landlord to have the dryer vent cleaned out and set up an appointment to have the furnace serviced and all the air ducts in the house cleaned out.  I then installed filters on each vent. 

A wonderful somebody that I’ve never met, but knows us through my friend Linda donated some money to us this week.  The timing of that gift was so perfectly reserved for the needs we had at this time.  We found a great price on a super Air Purifying system for Jacob’s room and one for the upstairs.  Air Purifiers were recommended by the Bone Marrow team, but not “required”.  It brought me so much comfort to know we would be able to have that for Jacob and we put it to work right away, cleaning the air in his room.  It smells like the air after a rain shower in his room. :o)

After about 10 days, our house was pretty much converted to hospital standards and ready for Jacob to come home.  I was beginning to feel better, but still not comfortable enough to stay at the hospital with him.  I just went up to see him for a little while during the day, wearing a mask the whole time.  The days dragged on waiting for him to be well enough to leave the hospital.  The Dr’s set a goal of getting him home by Friday, September 30. Friday morning came and the Docs said he wasn’t ready.  His liver counts had been rising and he was still needing oxygen.  They would have to keep him through the weekend and continue watching him until the liver started working better.

Jacob was well enough to be able to go outside and part of his daily routine was going for a walk to be outside at least twice a day.  He needed to walk as much as possible and to breathe fresh air to strengthen his lungs, get his gut moving and improve his liver function.  The first time I came back to the hospital to see him, I had him meet me down in the garden area in front of the hospital.  It's a little but very beautiful garden with a pond full of fish and fountains and lots of plants, benches & birds.  This was the first time I had seen Jacob outside his hospital room in 6 weeks.  Seeing him there in the sunshine, breathing fresh air was a precious memory for me. I don't think he realizes how special this was to me and what it meant to see him that day doing so much better. 

 We really had to coax Jericho to get close enough to Jacob to get this picture of him.  With all the talk about me not getting close to him so I wouldn't get him sick, Jericho had decided that nobody should be close to Jacob so we wouldn't make him sicker.   He's really uncomfortable here with Jacob touching him and he's trying to pull away! ...too funny.  He loves his brother so much. And, it's amazing what he understands about all of this.

 Joshua enjoyed seeing Jacob too.  He hadn't seen him in a very, very long time.

I didn’t like being in ICS near any other kids or moms and it was good for him to get out anyway, so I started packing picnic dinners for him each evening.  This was an exciting idea to me and I looked forward to our little picnic every day.  I brought a beautiful quilt made for him by a friend of Noelle’s.  I made potato soup one night, chicken burritos another, PB&J sandwiches, dinner rolls and rice pudding, jello, crackers & cheese, power bars...anything I thought might interest him.  I always had a selection of various drinks for him too and when we finished our picnic each night, we took the extra goodies up to his patient refrigerator in the nutrition room…just in case he got the munchies late at night (yeah right…haha)  I brought the other boys up with me a few times and on Sunday, the whole family came including Noelle & Ryan, Nick & Vanessa with their baby Allie and even Jed came to picnic with us.  We brought the Frisbee and a football for the boys and they had fun racing around and playing on the grass.  It was so nice and felt a little like our Sundays used to be before cancer.  

Jacob did pretty good eating at our picnics although he had very little appetite and was very nauseous all the time.  By Monday, we had finally figured out that if he had a dose of Ativan before coming down, it helped him make it a little longer before the stomach cramps and nausea started.

By Tuesday, October 4^th, the Docs finally decided to let him go home.  Although his liver wasn’t completely better and he was still needing oxygen, not eating & drinking quite enough and very nauseous all the time, they felt he would recover better at home and released him.

Up next: …Home at last!

Pet Therapy

This is the bulletin board downstairs of all the Pet Therapy dogs.  

Our favorite is Elliot!  Elliot is a Labradoodle. He is so big and has thick, curly hair.  –notice I said “hair”, not “fur”.  That’s right, Elliot has hair and that means he doesn’t shed! He is so soft and cuddly and he just loves laying his head in Jacob’s lap for a snuggle.
 

Elliot loves Jacob so much he actually prays for him whenever he comes to visit!  He puts his big paws up on the side of his bed and bows his head.  He even closes his eyes and then when his daddy says Amen, he gives a little bark, “Amen”.  …we just love him! 

Snuggles…

This is Juniper.  She’s a Brittany Spaniel. She’s so cute and snuggly and since she’s smaller than Elliot, we love that she can jump right up on his bed and lay with him.  

She was so comfy and apparently she’d been working hard all morning comforting kids in the hospital.  She fell asleep on Jacob’s bed…so cute!

300

Little did I know what a roller coaster we were getting on last week when his counts started to show activity!  Here’s what his week looked like:

Monday: 100

Tuesday: 300!  -yay! Way excited…we thought we’d be to 500 by Thursday for sure!

Wednesday: 200 – Docs said it’s normal to go up & down for a while…not to worry.

Thursday: 200 – again?

Friday: 300 – Docs mentioned the possibility of needing a neupogen shot to get him going, but didn’t do it, said they’d wait a few more days.

Saturday: 300 – still??

And here we are on Sunday, any guesses where his ANC is today?? 600!  Yep, that’s right SIX HUNDRED!  So happy…now I really know it’s working! Now, he’s just got to hold that above 500 for 2 more days and it will be official.

Roller Coaster Ride

Monday, September 12, 2011

This morning came the best news ever! It’s…a true miracle, the work of heroes-a whole team of them and the answer to heartfelt prayers of a mother, father, child, siblings, family, friends and strangers.  After just 17 days of waiting, the bone marrow Jericho gave to Jacob is showing its amazing strength and ability to thrive.  It’s working.  Jacob’s ANC is 100 this morning! 

            What does this mean exactly, you may ask? Since Jacob’s cancerous bone marrow is dead (yay...I can say that now without being scared), it is unable to make any type of blood cells… red cells to carry oxygen, platelets to clot his blood and white blood cells for healing and protection. ANC is a type of white blood cell.  The doctors call these “the first line of defense”.  ANC are the little soldiers, the ones standing guard and ready to attack at the first sign of trouble.  Without them, Jacob is susceptible to anything and everything that comes his way.    With these little soldiers showing up in his lab work, well, we know they had to come from Jericho’s marrow!

            The ANC are especially exciting to us because this is the number that Docs use to decide when Jacob is safe to leave his little isolation hospital room where he has been trapped for the past 28 days and go back out into the big wide world of real life again!  When his ANC reaches 500 and is able to stay there for 3 days, they will officially declare that the bone marrow has “grafted”.  This could happen as soon as Thursday.   We have to realize that the counts can fluctuate a little for a few days so we’ll have to be patient, but now that we know the marrow is growing…enough to show up at all, we know that it’s just a matter of time.

            This morning was so happy for me and it was so exciting to tell Jacob.  He was surprised and wasn’t expecting this to happen this soon.  Also, he feels really sick right now so I don’t think he was expecting any good news for the day. He took it all in stride and overall seemed a little proud of himself about it.  I sensed a bit of relief in him knowing he’s still ‘got it’.  He always loves to be the best at everything he does and I could just imagine him thinking to himself, “Ya, I’m gonna graft sooner than most, I even fight cancer a little better than anybody else.”

            I immediately sat down and posted the best announcement on facebook, “It’s working, It’s Working! Jacob’s ANC is 100! The marrow is growing!”  I posted updates on Josh’s wall, on Jacob’s wall, on the “pray for Jacob Watson” wall and on the Cancer Mom’s facebook group.  Then, I got out my phone and texted everyone close to us.  I was so happy, so excited.  We’re almost there!

            What I didn’t realize, and neither did Jacob, is that engraftment would make him sicker before he’d get better.  While his counts are zeroed out, he gets real sick and his insides get all torn up from the chemo damage.  He has to be given IV anti-biotics, anti-viral and anti-fungal medicines just to protect him from potential infections.  Basically, they give him a chemical immune system until he grows a new one.  When that new system "wakes up" it gets straight to work.  As all the different kinds of white cells begin to grow and reproduce they do the only thing they know how to do....defend, protect and destroy!  Well, imagine the worst flu you ever had and then imagine worse than that.  This is what they say it feels like...and that's what it looked like to me.  Once those white blood cells get their job done, he will finally start feeling better. 

            The day moved on and Jacob just kept feeling worse and worse.  He woke up in the morning with a horrible headache. His face was swollen up and he thought his eyes were protruding or something because his face felt weird. He was nauseous all day and the headache only got worse, not better as the day moved on.  He was able to lay in bed and watch TV for a few hours, but just lifting his head up enough to get the remote or take a sip of water made his head hurt worse.  It was a 9 out of 10 on the pain scale for most of the day.  He fell asleep and I stepped out to the laundry room/parent kitchen to make myself a sandwich.  My friend Kelly came in just as I was getting ready to leave and we had a really good visit.  Her son Jonathan is here for transplant and they are just about 2 weeks behind our schedule, so she’s feeling a lot of the same emotions and has the same questions I did the few days before Jacob’s transplant.  It felt so good to be able to offer my support, advice and a little encouragement.  Somehow, helping another makes me feel that what I’m going through and Jacob’s ordeal is not for nothing.

            As I was talking with Kelly, every few minutes I had this heavy feeling in my heart and wanted to go check on Jacob.  I reached for my phone and realized I didn’t have it in my pocket. (he hates when I forget my phone and leave the room…and here’s why)  Finally, the feeling was too much and I told Kelly I had to go check on him.  She felt the same way about Jonathan and went to go check him too.  When I got back to Jacob's room across the hall from the laundry room, he was sitting in bed with eyes half closed looking pale and exhausted.  He had just recovered from a horrible vomiting spell. He didn’t have a bucket nearby (but somehow got it and didn’t make a mess) He had paged the nurse, and they didn’t come. He had called me and then Dad wondering where I had gone and ultimately managed the whole scary episode himself…alone.  I felt sooo bad!

            The whole day was like that, ups and downs…happy that his counts are coming up, sharing the good news with a smile and then looking at him…suffering and me fighting back the tears.  I have to cling to all the ups and stay positive every day.  We'll have him home soon...sooner than we thought we would! So much to be thankful for!