Friday, February 25: Day +8

Again, some of this was written last Friday and I've filled in the gaps in places.  I chose not to re-write what was already here, so please forgive the shift in my verb tenses.

Let me start by saying I really do not like leaving Chase when he is in this condition.  I know my Mom is with him and she will take care of him.  I know the nurses and doctors are there for him, but when he is so sick, I wish I didn't have to be pulled away for something meaningless.  Had Dish and Comcast not given me bills for $600 collectively for not promptly return their equipment by March 3 (not to mention two robo-calls), I would have told them to wait.

Now that I have that behind me...

Back in December, my mom washed her cell phone.  In truth, she needed a new phone.  It wasn't that hers was bad, but she needed something more modern.  I really wanted her to be able to text, but her old phone was the kind where each number key has 3 letters on it instead of a keyboard.  Not conducive for texting.  After a lot of urging on my part, and also from a long-time friend of hers who has an iPhone, to get a smartphone, she did exactly that.  Plus, right before Christmas Best Buy was offering free phones that were normally around $200. It was kind of impossible to pass up, plus I got her onto my phone plan so all our calls to each other are now free.

So where am I going with all this?  Texting.  I have created a texting monster.  I think it took her about a week for the texting fever to seep into her blood, but she loves it now. And (here's my point) it's been a great way to get updates from her when I'm not at Egleston.  The Internet here is slow.  Actually, slow is being kind.  So, now having the ability to quickly send off an update from her phone has been wonderful.  It's been so helpful, and has made me feel better when I'm away.

Having said that, this update will be shorter since I've compiled it with information she supplied having not been here myself.

First, they started Chase on Neupogen (Filgastim) today, which is a form of GCSF therapy, the purpose of which is to stimulate the white blood cells to produce.  When my mom told me this, I was surprised.  I thought they would give Chase the full 21 days as they did before, so this news caught me off guard.  Since his mouth was in such bad shape and his bleeding was increasing, they opted to start this therapy to give his immune system a jump start in its production.  If memory serves, he'll receive Neupogen for three days, after which we wait to see what his marrow will do and how quickly.

Back in May when he received it, the difference in him after four days was pretty amazing.  Honestly, since this is 13 days earlier post-transplant than when he received before, I'm not expecting those kind of results.  However, any kind of boost he can get will be so helpful for him.  I believe I've said it before about how much it pains me to see him like this when there is nothing more than I can do but offer him a tissue to wipe his mouth and help keep it clean as much as possible.  So, if this can provide him more comfort more quickly, I will be so thankful and relieved.

Later on Friday I received another message from Mom about the dentists coming by.  Three of them showed up and they also met with the BMT team to discuss his mouth.  He has a couple of serious ulcers  that are bleeding along with one in his throat this is fairly significant.  Between them and dermatology, they have suggested taking him completely off all of the mouth wash regimens he has been using up to this point.  Unbeknownst to the doctors and to us, the Biotene mouthwash and those pink foam brushes I included in a previous post have mint in them, which in rare cases can cause an allergic reaction.

Their suggestion was to try a saline mouth rinse.  I cringed when I heard this.  Saline??  He has ulcers and other lesions in his mouth and they said to use saline???  She did say doctors worked on getting his mouth cleaned out as much as possible, and there was talk of using hydrogen peroxide and sterile water, too.  At this point, I'm not sure which was used or if they both were, but Mom said his mouth looked so much better.

From my perspective, I'm a bit dubious about him being able to swish anything.  He can't drink or swallow at all.  He doesn't have the ability right now to hold anything in his mouth either.  Heck, at this point, he can barely open his mouth.  When he does, I can see his bottom teeth and the tip of his tongue, which appears to be covered in dried blood.  I don't believe his tongue has cuts or sores on it though.  I honestly believe it's a combination of the mucous and blood drying there or at least I hope so for his sake.

Another text from my mom around 3:00 said an Infectious Diseases doctor had even stopped by.  So, if you're keeping track, we've had two dermatologists, three dentists, and an infectious disease doc come by here in addition to his BMT docs.  Oh, and I also forgot about psychiatry department, too.  Chase has regular visits from a psychologist.  It is part of the BMT protocol, but with everything he's been through, he has been seen by someone at least twice a week since September of 2009 while he is in the hospital.  Right after transplant, it was recommended he start on an anti-depressant, but have since stopped it to rule out its possible role in his lip swelling.  To date, I think there have been five different people from the psych department coming through here - three at most on a given day.

Back to the infectious disease doctor...he is of the opinion this is viral in nature with a possible combination of a drug or mouthwash causing this reaction. They took a herpes culture, which won't be back for 48 hours.  Just the mention of it made re-read her text.  Seriously?  Then again, they say the worst place to go is the hospital if you're sick.  I'm wondering if it will even show up anything since Chase is already on about 3 to 4 different antibiotics and anti-fungal meds.  My head is really spinning here, but at least they are aggressively trying to figure out what is causing this.

Physical therapy has also stopped back by.  He hasn't been seen by them at all since October, so I was kind of wondering if they were still going to work with him.  I guess since throughout his past two hospitalizations (October through January) he was getting up and walking around fine, they did not feel the need to come, which is good.  However, he needs them to step in and they have - with a walker that has wheels.

A walker?  That's wonderful!!  Why didn't someone come up with that idea last year??  We were using a wheelchair instead that he would push, which can quite easily get out of control.  My mom was thrilled though and said he was able to walk so much better, with much more confidence, and walk much further than he had the previous day.  Praise God!

There is still the matter of finding a way to make bath time less of a battle, but overall a few small steps toward getting his mouth condition improved and now a better solution for him to gain exercise, too.  From the sound of her reports, Chase was having a much better day than we had initially expected.  Given her news, I decided to go back to her house to spend the evening with William that night and then sleep in before going to back up to Egleston.  Yes, I'd like to run back up to the hospital, but I'm so grateful to have this evening with William.  I also think it does Chase some good to have my Mom there.  It gets difficult to maintain the "tough love" routine day after day.  She can give it to him while I re-charge.

And William and I ended up having a very nice evening together.  I called to ask him if he'd like to watch a movie, and he told me he wanted to see Unstoppable.  I had a Blockbuster movie (by mail) DVD in my purse I needed to turn in at a store for a free rental, but there are no open stores near my parent's house.  And guess which movie I brought from my house?  Date Night!  Yes, the one Chase and I have already seen, but I didn't mind.  For a while, I didn't think William was going to watch a movie with me at all, then around 11:30, he decided to ask.  Although not thrilled with the selection, he gave it a go and was surprised to find it as entertaining as it was.  I was even catching lines I had missed the first time.  He kept me up talking after the movie was over until about 2:00 am.  So much for getting some additional rest, but I wouldn't trade the night for anything.

I have a draft going for more posts and hope to have them published very soon!

Your continued prayers and support are greatly appreciated!!  Thank you so much and God Bless!
Caroline :)