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?