Proceeding Gingerly into GVHD

One of our doctors camped out in pathology last night with the pathologists and Abby's muscle sample results and they have made their decision on how to proceed.  The results weren't conclusive but there is enough evidence that it is GVHD of the muscles to proceed with treatment.  As our last post said, it's going to be a balancing act with her immune system.  Not treating for GVHD when it could be GVHD means she may not ever reclaim mobility and her cells would continue to attack her muscles.  As it is they are hoping they caught it in time to reverse the effects. So, we are heading into treatment.  They started IV steroids last night.  She will get a cousin to the anti-rejection drug cyclosporine  which was in her drug line up until November.  She will take penicillin because of bacteria that can enter the blood from the GVHD/muscle attack. She will also take the antifungal that possibly caused a reaction, since we can't rule that possibility out yet totally.  They will enter into all of this with her slowly, or "gingerly" as our doctor put it.  They will keep a close eye on her as we proceed.

So..... how's Abby?  The liver biopsy and PICC line are over.  She was under for 3 hours.  All went well and she has the new line in her right upper arm.   That is a huge blessing in the midst of all this hard.  She was pretty groggy most of yesterday afternoon and napped a lot. PT and OT showed up at 4:00 to try to work with her and it went okay.  They will be in daily so we are grateful for the help while Abby is fighting it because it hurts so much.  We tried giving her the big pain med but she was so groggy it was hard to work with her.  We'll have to find yet another balance there.  I feel like all this balancing is going to come crashing down any moment! One day at a time.....right?  So she was on oxygen after the procedure and her blood pressure was really low going into the night.  I haven't heard from Mark yet on how she did or if they got a visit from the ICU team to talk about moving her there for the night.  No news is good news?  I hope and pray that Abby's anxiety can come down a bit now because of the PICC line.  Every third person coming into her room for the past week has been there to poke her.  I sit in the living room of our house right now and think that even though this is so hard, at least I get to come home every other day.  Abby doesn't.  She is only watching TV and sleeping right now but we hope that will start to change.  I brought her art supplies, her legos, some books.... I'm praying those get used soon. We will head down to the hospital after lunch today so Anna can have some time with Abby.  Lily has to sit in the family lounge outside the floor because it's respiratory season and she's under 12.  She's a good sport.

Prayers?  Continued healing, strength for all of us as we walk this out, steroid side effects to be minor (grumpiness, sadness, paranoia, obsessive behaviors), no reaction to the antifungal, infection protection, everyone's hearts in this (with 3 girls and me there are a lot of emotions going around!), and wisdom for the doctors as they proceed gingerly.

Thanks!

Maybe out by Valentines? Maybe.

I talked to the Docs yesterday. Still no answers but they are leaning heavily to graft vs. host disease (GVHD). Basically your blood cells attack the foreign body (which happens to be your own body) because they still haven't learned that this is their new home. Typically this is seen in the skin, the gut, or other fast dividing cells but it has been reported in the muscles too.

So, if it is muscle GVHD, we need to knock the cells back down and/or mute their response with drugs or other treatments. Basically weaken her immune response, and in doing that, weaken her ability to fight real infections too. So, as you can see it is a real balancing act and they really have to have a clear diagnosis (or at least know that it is not an infection) before they knock out her immunity again.

Yesterday was a muscle biopsy. I could've swore they said needle biopsy but I may have put those words in their mouths. Either way, the surgeon who did it had done a bunch of them at John Hopkins and was very skilled. She took 3 fiber strands, each was about 5mm X 5mm X 15mm. They way she did it doesn't effect the muscle integrity and Abby said walking wasn't more painful than just sitting there. Pray it heals up quickly, especially if they have to drop her immunity down soon. It was pretty painful but after an hour or so we got it under control with meds. -That was a tough hour.

Today she goes in for her Picc line as well as a liver biopsy. Both of these procedures use radiology imaging to see inside Abby while they drive the hardware and/or instruments down through her veins. One they will drive down from her neck vein to the inside of the liver for a biopsy sample. The other (the picc line) will snake along from her arm towards her heart so that they can have a nice way to deliver meds or take blood samples without giving her yet another IV or needle stick (she had 2 failed IV attempts and 3 finger pricks -all that failed to get the neccessary blood) on Wed night. Basically this Picc line will save her from having to get needle sticks for a while and that will be a great thing as she gets really anxious each time they have to stick her.

The plan right now is to get the pathology back from the muscle and liver biopsies and then make a treatment plan once they have ruled out any type of infection. We hope the pathology is done by Monday so that we can start treatment and then hopefully leave. But, as we all know, anything can happen and so we'll see. I'm hoping and praying that we can come home by Valentines Day.

Thursday

 The muscle biopsy was done this morning early and over by 930. It was a little more than we expected because they made a 1 inch incision and they took a couple of muscle fibers. We were prepped for a needle biopsy. She is in a lot of pain. Heavier pain meds got on top of it around 11/00. It was a long couple of hours for Mark and Abby waiting to get on top. Just wanted to give an update.

Abby's page ranks #1: The good and bad of this cancer recovery

Did you know that if type in "Abby Update" into Google, that this site is the first listed? I am happy that you all care about our family so much to make it the top listing and, at the same time, that also makes me sad, mad, and full so many other emotions.

It's a small taste of the same things that we are feeling right now. Glad for all of the love, the care of the Docs, and our friends. But, we'd also like to not have to be updating this page still. It will be a great day to me when our Google page rank fall down off of the first page of the search results. :)

The Heart:

It's been a hard shift for us again. From a healthy kid to once again back in the hospital. I mean seriously, Abby was doing so well: getting stronger, playing in the snow, walking with us around town, doing math... you know all of the normal things of life. And now this. -whatever "this" is as we still don't know. I don't know if this is the right forum for full honesty about how we are doing (and I was just in the hospital with Abby for 5 days so I probably not in the best spot either). But it's been a hard-to-swallow reality check that this cancer recover road isn't just a walk in the park.

It has been a hard and anxiety producing place to live in right now. Hard for Abby. Hard to endure yet another needle stick for blood draws. Hard to keep getting new IVs because they are only lasting 2 day. Hard for her not to be able to straighten her arms, or to walk, or sit up by herself in bed. She's a perseverant and tenacious kid but everyone gets to a place where they are just exhausted and I think she is there daily right now. And, for me, it's hard to watch and not be able to do anything about it.

The hospital is just a hard place to be. So pray we can leave there soon.

The Update:

• They still don't know what is going on. 
• Bone marrow test was negative for cancer so far (deep test comes back later this week or early next). 
• They have the infection disease team checking for weird and rare infections and viruses but they are pretty sure those will come back negative. 
• It could be a rare form of graft vs host disease that is attacking her liver and muscles (but they need more test for this).
• It could've been a reaction to one of the meds she was on for the fungal and bacterial infections. Both drugs come with warning labels for rare but possible tendon rupture/damage. -but after you have already put your kid in a lead shielded room for radiation you kind of stop reading about all of the possible side-effects of these treatments.
• Either way, we'll have to probably get her on steroids to bring down the inflammation and then do a lot of rehab to get her moving around by herself again. 

The Plan:

Wed:

• AM- Abby gets another new IV and blood draw. -Plus takes pills, drinks her water (62oz per day), does her stretches for her arms, hamstrings, calves, ankle and shoulders to try to regain her range of motion. 
• 11:30- Abby gets a 2 hour MRI to help diagnose where all of the muscle damage is so that they can take biopsies of those muscles later this week.
• PM- More pills, physical therapy, water, mouth care, etc.

Thurs/Friday: 

• All the same AM and PM items (which is a full time job).
• Surgery to get a semi-permanent IV (called a picc line), and a Liver biopsy, and muscle biopsies.

Sat/Sun/Mon/Tues?

• Maybe get to go home. Please, please, please.

The Prayer:

• For strength as we run this new leg of the race. 
• For Abby to relax into this place even though it will take a lot of her energy. 
• That our relationship with Abby will transcend the: pill pushing, the making her drink water, making her stretch, making her.... 
• That we all can have peace about all the balls that will be dropped during this period of our lives in our marriage, work lives, school lives, family time and all of that.
• And of course for healing of Abby's muscles and for them to stretch back to their former length and strength.

Bone Marrow Test, New IV, and possible GVHD

I went down to the hospital today to see Abby.  I was finally 24 hours symptom free so the girls and I headed down this morning.  They did school in the car, as much as they could, and we were able to get there before Abby's bone marrow procedure.  It was good to see Abby and give Mark a little break.  Anna got to come into her room and that was sweet.  They did a puzzle together and played some GoFish.  Abby had a rough night and so she was tired and more emotional today.  Her IV was hurting last night so they turned off her fluids at about 1 AM.  Since the IV was causing so much pain, they kept it off but she then had to drink water for the next hour and a half to get in her needed amount before she could go back to bed.  Today was the bone marrow test which involves putting her under anesthesia.  They do that through the IV and it was still causing her pain this morning so they had to put in another one.  Poor kid.  They did it in the procedure room, which is like a mini operating room in the clinic, so the anesthesiologist was able to give her some laughing gas to calm her down.  The placement went great but the anesthesia itself burned a lot going in.  She has to have the IV in her hand because she can't straighten her arms all the way and hand veins are smaller and more sensitive.  But, once asleep the procedure was easy and quick and she took a needed small nap in recovery.  They did preliminary tests on the marrow for cancer cells and didn't see any-YEAH! They send the sample to Seattle where they do a more in-depth test that we will hear results on in 5 days.  They also tested the bone marrow for some other things and all is well there.  The hard news of today came when they discovered Abby's elbows actually can't straighten because of scar tissue.  They thought that when she was asleep in the procedure room they would try to straighten them to check but couldn't get the to straighten out.  This could mean she has graft versus host disease in her muscles.  It's pretty rare for that to be the reason, but since there is a chance of it they want to try to figure that out.  If they don't treat it and it's there, her muscles will continue to be attacked by her own body.  If the muscle damage and scar tissue are just from a bad allergic/auto-immune response from medications, then the same treatment will take care of that too since it involves  steroids.  So.... they'll do an MRI this week to pinpoint the most inflamed muscles and then biopsy those areas as well as her liver.  The biopsies aren't crystal clear on if it's GVHD or not, but they will give them something more definitive to go on in making the decision for treatment.  We also need to decide on having them put in a PICC line (I had to look up how to spell that-I don't know what it stands for) or another Broviac port.  If she has GVHD, she will need a Broviac for the months to come.  So we can have the PICC put in but it's only a bridge until we find out if she needs a Broviac.  Tonight, we're just glad we got through the day and she got to see Anna and we can think about PICCs and Broviacs tomorrow.  Goodnight all.

Still here but doing ok

They always say that hospital food is bad but I guess they have better food at this one.