Shaila's Home! Update #14

Update #14 from Shaila's husband:

Dear Family and Friends, 

Homecoming. This means different things to different people. For most, it refers to the big football game at University where alumni and current students come into town and party til the dawn. There may even be some alcoholic beverages consumed. It's pretty much a huge event that everyone celebrates. Unless you go to a community University College like I did, where my primary goal was to get in and to get out as fast as I could, much like the tactics employed by my cousins when sneaking into the golf course at night to 'fish' for golf balls in the water traps.  No partying at school for this responsible, young, cop wanna-be! (insert angel's harp music here, with a glow of light beaming down from Heaven). In any case, Homecoming is surrounded by cheering, music, horns, and lots of banners. A lot of planning goes into this event. 

Shaila's homecoming preparation didn't have any marching bands. No cheering. No hoopla or trumpets blaring. She did however have music. She got to listen to a Christian FM station with Chris Tomlin singing. That's close to a marching band with 10,000 screaming fans isn't it? Well after an amazing Easter Weekend filled with amazing news that the gattii fungus has been killed in her spinal fluid, she was put on the list to get an MRI this week. We were told that the MRI needed repairs and therefore she may not get one until Friday the earliest. Well, somehow Shaila got bumped up and received her MRI yesterday. We were very happy about this as the results of this test will determine if Shaila is able to start her homecoming parade.  Dr Vortel once again told her that her blood work was great, and would discuss the results of the MRI today. Again, he is hoping the fungus has not grown and in fact, has shrunk. In the meantime, Shaila had a consultation with Dr Mackie, the Neurologist she saw a few weeks ago that has been helping to manage her pain. Dr Mackie discussed her pain management, and simply put, Shaila will be having some tough days of headaches as she comes off the narcotics she has been taking for the last 6 weeks. All in all, it was a great discussion and very informative.

Okay, I need to cut to the chase here, if you don't mind...I can barely stand typing any more verbiage without getting to the heart of this update. 

So. The stage is set. I showed up this morning to the hospital as soon as I could. Shaila was up and at 'em by the time I got there. She actually had a good sleep. So there we sat, two actors on a stage waiting to see if we got the part in the play or not. A bit nervous. A bit excited. Damn I want my wife home. But, who knows? We've mentally prepared for 8 weeks, so that is the game plan I'm sticking with. There's so much going on in your head when you're waiting to see what the last few weeks of Ampho B has done to the fungus. Are we setting ourselves up for disappointment? 1 in 4 healthy people die from this, and here I am hoping my wife can come home 3 weeks early. Wow. That's ballsy. 

The Director didn't walk onto the stage until 1:30pm. He usually comes by around 9:30am, so we were kind of wondering what the hold up was until he came rushing into Shaila's room in a hurry. He was the on-call doctor in Emergency, and therefore was tied up in the mayhem downstairs. 

"So? Do you want to go home?", he said with a grin on his face. 
"Yes, yes I do!" Shaila said triumphantly. I echoed the sentiment like an excited parrot. 
"Well, you're going home! Like now, as soon as I can get you out of here", Dr Vortel said with a big grin. 

We both smiled from ear to ear and did a quiet cheer as we couldn't believe it. We were so excited!!! Dr Vortel, obviously in a rush as his pager kept going off, immediately started talking about her drug regime and follow up appointments. She needs to see him this upcoming Monday, then we'll see from there. She is also going to see the Neurologist within 2 weeks of leaving. 

Then he stopped mid-sentence...

"You've already heard the results of your MRI, right?", he said. 
"No, we're waiting for you to tell us!" we both replied to him. 

 "It's clear", he said. 
"What do you mean?", we both asked.

"It's gone. We can't find it. It's completely clear," he said, shaking his head and slightly grinning. 
"What?", we declared. "You're joking, right?" I asked?

"No, we can't find any trace of it. It's completely clear. Not even a scar on your brain. It's disappeared and I can't really explain it", Dr Vortel states. "There's no sign of it anywhere. I don't know what to say."

Shaila and I burst into tears as Dr Vortel attempts to give a plausible, medical reason for it. 

"Maybe the last MRI before this one was picking up some inflammation, and it wasn't a fungal ball...I don't know" he said with a sly grin on his face. Dr Vortel didn't even believe his own lame explanation!!

Shaila immediately stated to Dr Vortel through tears, "I know!! It's because I have an awesome God who heals!"

"Um, ya....ya...that too" Dr Vortel reluctantly acknowledged.

I can't really recall much after that, as I nearly had auditory exclusion at that point along with my tears of joy for answered prayers. I still could barely believe what I had heard. But, no, Dr Vortel's lips were still moving and they seemed to be saying things like "get your things together" and "I'll get your PICC line removed immediately" and "I hope you have a good extended health plan". 

Yes! You're reading this correctly. Shaila's homecoming has come and gone. We are home! After packing up 6 weeks of accumulated 'stuff', we said good-bye to the few nurses on the floor. They were sad to have Shaila leave, but were thrilled she was going. Shaila had developed quite the relationship and bond with most of the nurses over the nearly 6 weeks at the hospital. I must say, they are great women who work hard and care for their patients. We have yet to see what the next few weeks will bring, but it looks like Shaila will still be on 22 months of flucanazole and 9 weeks more of prednisone. She still has a journey ahead, but her backpack is a heck of a lot lighter. We walked out without any I.V. pole dragging behind Shaila, without any beeping from the low battery, and without any desire to return. 


love,  
Ryan

Happy Easter: Ryan's Update (Lucky?!) #13!

This past Friday's update from Shaila's husband:

Happy Easter Friends and Family!

The stage is set. You've trained hard and you've trained long. Your body is fit, your mind is healthy and keen. Your faith is firm and your confidence is high. You look at the starting line through anxious eyes. The starter's pistol has gone off and you're running, running, running. You don't really know what pace to set for this type of marathon, so you play it by ear. Better safe than sorry, so you run slow and steady, cautiously navigating the twists and turns of the course. As you run along, you notice people on the sidelines. People that are more than just spectactors. They are friends. They are family. Cheering you on, passing you revitalizing drinks and encouraging you through their very presence. They feed your soul. You pray long and hard that you will make it through the marathon.

You've reached the half way mark now, and you turn your energy on completing the task, finishing the journey. You round the corner and start feeling better. And better. Your energy is increasing and you are feeling lifted by the prayers of your supporters. You cross a narrow bridge and are met by the course Marshall. The course Marshall starts running next to you and proceeds to whisper in your ear words that you simply do not believe. Words that you should believe, and you do believe...but...but...He tells you that your marathon is actually a 4x400 relay.

Good Friday just became extra 'good' for Shaila and I. I sure hope you're sitting down.

Course Marshall Dr Vortel just paid Shaila and I an early Easter Friday visit on his day off. As of last night Shaila is no longer on the Amphotericin B drug. She doesn't need it!! It appears as though the fungus in her spinal fluid is completely eradicated. Her blood tests and lumbar puncture results have shown that Shaila is doing amazingly well. So well that after consulting with his mentor, one of the leading doctors on Cryptococcal Meningitis in N. America Dr Phillips at St Paul's hospital, both Dr Vortel and Dr Phillips have agreed that Shaila no longer requires Ampho B, just "Flucanazole", which is an oral anti-fungal medication. For the short term, she will still be taking the 'Flucytosine' which she's been taking in conjunction with the Ampho B.  After Shaila's MRI sometime next tuesday or wednesday, Dr Vortel is going to release Shaila from the hospital 3 weeks earlier than anticipated!!!

We are, simply put, stunned.

Our tears of joy have caught us off guard. Our prayers and those of the faithful have been answered. And yet here we are stunned. Stunned by God's goodness and faithfulness. As this news sinks in, we continue to feel awe-struck, excited, and quite frankly, scared. This about turn has caught us off guard...in a good way. So as we process this, we praise God for this blessing!

The only way Shaila will not be discharged as an out-patient by the end of next week is if her MRI shows that the fungus on her brain has grown. Dr Vortel is very confident that this is highly unlikely. In essence, Shaila will leave the hospital and take Flucanazole once a day for at least 22 months. the Flucanazole will slowly kill off the remaining fungus on her brain and in her meninges (the system of membranes around the brain). Although there's a good list of possible side-effects to Flucanazole, Dr Vortel has told us that he has used this drug since it was formed and rarely sees any of the side-effects listed. Unless there are complications, Shaila will only see Dr Vortel once a month for tests and a check up. Dr Vortel is very, very pleased with Shaila and amazed by her recovery. He has told us that he has not seen very many people like Shaila in his career. He believes that Shaila will make a full recovery and believes that her chances of reoccurence are minimal. This is largely due to her age, healthy body, healthy lifestyle, attitude, and the size of the fungus ball (1.3 cms, which is small).

Now there is a small chance of reoccurence and a small chance that the Flucanazole may not kill all the fungus. This is unlikely, but he cannot predict how the brain may or may not protect itself from the fungus. This, simply put, can be by forming a protein barrier or scar tissue around the remaining fungus, thus preventing it from truly being completely eliminated by the drugs. However, once again, due to the size of her fungus ball, it is not believed that this would be the case with Shaila.

So....wow. Change of plans!!

As we celebrate this Easter weekend, and what it means to us who are Christians, Shaila and I also rejoice as we start our new course. We are still in the race, and we are still engaged in the battle. However, it appears as though we somehow underestimated the strength of our Allies and the power of our Artillery.

Happy Easter everyone. We love you all.

love,  
Ryan

Halfway-point news from Shaila, & from Ryan's Update #12

Recent word from Shaila is that her lumbar puncture today went well, and she would like continued prayer for no headaches after (severe ones are common after this procedure).


~excerpts from her husband's update are below, from late night Wed Apr 20.

Hello Friends and Family, 

What is it about " 50% " that peaks virtually everybody's interest? Seriously though, there is something about 50% that we just love. That pop has 50% less calories...oh baby, that means I can drink two! Present this coupon and receive 50% off your next purchase. Buy one pair of shoes and get 50% off your second pair. Wow! A second pair of shoes that I don't need and all I have to do is buy one already over-priced pair to get them? Yes, please! But honey! The dress was 50% off!!!! I even remember a friend years ago telling me that his dad (who owned a damaged goods store) would have trouble selling something that was advertised as 20% off. So he would jack up the price, then advertise 50% off, and they'd sell like hot-cakes! 

So, what's with the 50%? Well, it is simply a beautiful number when you are taking Amphotericin B for 8 weeks to fight a life threatening fungus that is attached to your brain! Today marks the 4 week anniversary of Shaila's treatment,which means we are half way (aka 50%) through the Ampho B and hospital stay!! What a whirlwind the last 4 1/2 weeks have been. For me, the only useful reason for looking back over our time here at the hospital is to simply remind me of how far Shaila has come and how good the Lord has been to us in the midst of our fight. We truly have not had to walk through this battlefield alone. Our small army of friends and family have truly stepped up to the plate and shown us what they are made of. The power of prayer has been proven over and over again throughout this process.

Since my last update last week, Shaila has had an amazing 6 days. She is riding a small wave of either pain free, or nearly pain free afternoons and evenings. She always wakes up to the infamous Ampho B alarm clock, takes some morphine with her Special K, and waits for the morning to go away. She started a different type of pain reliever this week, "hydromorphone", which is more of a slow release pain reliever. My Latin is a bit rusty, but from what I recall from Elementary School is that this is a derivative of morphine. The morphine is good for a 20 minute relief, but doesn't last. The hydromorphone seems to last longer, therefore providing better relief. This in turn helps Shaila recover faster and enjoy the rest of her day more, which in turn makes me happier. One big happy-fest.

Dr Vortel comes in every day with the same good news. Nothing new to report. Her bloodwork is pristine. Her kidney's are functioning well, as is her liver. She has been lowered from 60mg's to 30 mg's of prednisone. Again, thanks to prayer, Shaila's only side-effects have been minimal. That being, some weight gain/water-retention in the abdominal area, and her face has become slightly round (typically called 'moon-face'). The prednisone has truly been instrumental in relieving Shaila's headaches and pressure. She will most likely stay at 30mg's for a bit as the pressure came back very minimally once they hit the 30mg mark. 

Over-all, Dr Vortel is amazed at how well Shaila is doing. Generally speaking, he could not be happier with her progress. Obviously we are thrilled by this all the while guarding our enthusiasm a bit. After all, just because you're in the lead, it doesn't mean you throw your arms in the air and start celebrating! We still have a long way to go, but it is comforting and encouraging to know that Shaila is progressing exceptionally well. Many of you know that she has had a visitor ban in effect. This has been a tremendous help as she is able to concentrate on healing and saving her energy for where it really counts. I can notice a huge difference in her mental focus and energy level as a result of limiting her visitors. 

So...

Big day tomorrow. Dr Vortel is going to do another lumbar puncture. Shaila needs some big time prayer for this. Not only does she not want the notorious 'lumbar puncture headache' that rocked her several weeks ago, but also this test will again shed some light on her progress in fighting the fungus. She will be having an MRI next week sometime to see how the fungus on her brain has reacted to the Ampho B over the last few weeks. Dr Vortel is avoiding the CT and MRI this week as Shaila has had a lot of radiation thrown at her over the last 4 weeks, so he wants to wait a bit longer before exposing her to more. We're alright with that. 

I went back to work last Friday when Shaila's sister was out to help with this transition. Shaila and I have set up a routine that seems to be working for us. I arrive at the hospital near noon, leave at dinner, and return while I'm working when she gets the Ampho B and her 'happy drugs' (demarol and benadryl). I am fortunate to have great people to work with and very accomodating bosses. I think it must've been a shock to everyone here when I walked into the ward in uniform, after seeing me in the same jeans and t-shirt for the last 4 weeks. ...

Gotta go. The other 50% is calling. 

love, 
Ryan

Shaila's recent Facebook updates

Here are 3 recent Facebook updates from Shaila:

This morning (Wed Ap 20)
Today is the 4 week mark for in hospital treatment. Half way there!

Early evening yesterday (Tue Ap 19)
Another pretty good day with monster nap in the afternoon. All in all not too bad.

Early morning Monday (Ap 18)
I just slept 8 hrs. Woke up to need morphine. But still.....I am so happy! thanks for your prayers.

A (positive) turning point (excerpted from Ryan's update #11)

~by Shaila's husband Ryan, update from late last week~

Wednesday... was going to be a different day. And I'm talking a very different day. If I think about how everyone is praying so diligently and ceaslessly for Shaila, it truly brings tears to my eyes and goose bumps on my arms. So you can imagine how Shaila and I felt yesterday when Dr Vortel came rushing in to Shaila's executive suite beaming with joy and excitment. (Note: this is a good thing when you are fighting a life threatening fungus) Dr Vortel had received the lab report from Shaila's lumbar puncture on April 5th and after reading over it, discovered that the lab was unable to grow any fungus from Shaila's spinal fluid!!!!! This means that after 13 days of Amphotericin B, the fungus has been killed in her spinal fluid. Shaila said she's never seen him so excited. 

This obviously is very good news for us. It is quite literally an answer to prayer, along with her amazing kidney function and elimination of headaches. We thank the Lord for this. What the battle is primarily focussed on now is the attack and permanent destruction of the fungus that is attached to Shaila's brain, while maintaining healthy kidneys. Despite the great news, the battle still rages and Shaila will remain in the trenches for the full 8 weeks, until May 18th most likely. We are cautiously enjoying the few days of freedom from pain in Shaila's head. We know what bad days typically can look like, and are now enjoying the good days. Bring on more good days! 

So as we pass the 3 week mark, we celebrate some victories, focus on the remaining challenges, and forge ahead into the great unknown.