Central Line Out!!!

DONE with Plasmapheresis!!!

I am officially done with my plasmapheresis treatments! I thought it would be a big day when I announced this, but I didn't even know my last treatment was the final one.

I've got a nasty case of bronchitis (thank you ER germs 😡) and I've seriously never felt this miserable! Normally if I get sick, docs won't let me do treatments (the treatments remove all my antibodies, so I have no immune system). But my doc said to get on a strong antibiotic and push through the last two treatments if I could. So I went to my treatment Friday, coughing and miserable the whole time (thank you to the Moshae wedding and my amazing cousins for hanging out with me by FaceTime and cheering me up while I was there!!) Afterwards I got home and I seriously thought I would die. I felt so sick I couldn't even process it...I don't remember half the things that happened that evening. Thanks to my husband and his friend, they gave me a priesthood blessing and things got a little better. At least I felt a little more alive, and felt some hope and peace, like I could get through this. It's been a rough few days though. With such a bad reaction, we are not pushing through the last treatment.

And so officially...here is my anticlimactic, non-celebratory announcement: I'm done with my plasmapheresis treatments. (I feel like I need a tiny, non-impressive little flag to wave here! 😆) It actually is great news though. These treatments have been a very long and difficult road for me and for my family. The next stages might not be easy or fun, but I am soooo grateful to have this stage behind us!! Unless my brain lesion is definitively improved, I don't think I will ever agree to these treatments again. It's just been too hard, with too many complications.

Thank you to everyone who has been there to help us get through this!!

Thank you especially to my amazing husband James ...he's had to sacrifice and struggle alongside me every step of this treatment and the past year of me being sick. (This is not a small job!!) In many ways this trial rests heavier on his shoulders than mine, as he works to support me physically and emotionally, provide for our family, care for the kids, keep the house in order, cover medical expenses, visit me at treatments and in the hospital, worry about my safety, help me make hard decisions, and keep everything in our lives on track while I'm recovering. And he does all of this with a heart full of love and compassion. I'm so grateful!

Thank you to my family for dropping everything on a regular basis to help me and be with me. 💕 Thank you for being with me at doctors visits, treatments, tests, for hanging out with me all the days I was stuck in the hospital and the ER, for helping with our kids, bringing us meals, and for all of your love and emotional support. We couldn't survive this without you all!

Thank you to everyone who has come to sit with me through my crazy long (often five hour) treatments and to everyone who offered to come sit with me! Thank you to the wonderful ladies who cleaned my house while I was at the hospital on Friday (amazing!!) and to the wonderful friends and church members who have brought us meals on treatment days (life saving!!)

Thank you ALL for your encouragement and supportive comments here and by text. There have been days when all of this is just toooo much, and then I think of all the people praying for us and every expression of love and support, and it helps so much!

Last night i was in so much pain, and so miserable I couldn't sleep for hours. I had many conversations with the Lord, and I decided to thank him for all of my blessings (that usually helps me calm down). I have to say, the list of things and people I'm grateful for was so long it was overwhelming. So many of you were on that list. In an absolutely horrible moment of my day, I felt completely blessed. Thank you all for being the Lords blessings in my life 💕
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NEXT STEPS: Next week I have my PET scan on Tuesday, my central line taken out Wednesday, and MRI Thursday. (Some/all of this will change if I'm still this sick.) The following week I have appointments with my neuroradiologist and my neuro-oncologist, and we will likely be making a final decision about the brain biopsy and trying to figure out my treatment plan moving forward.

Pic: This is my Life Right Now 😆

Treatment Drama & Cardiologist

UPDATE: had a strange reaction after my treatment Monday. Basically, right at the end of treatment, the nurse pushed a final syringe of saline and my heart and body started freaking out, I could barely process what was happening. They took me over to the ER, but couldn't pin down what happened. I met with a cardiologist this morning before going to my next treatment.

Cardiologist: He says there are two likely explanations for what happened yesterday.
First, it's possible that when the nurse flushed my line it dislodged a small blood clot, or piece of an existing clot (the subclavian clot is still present) and sent it through my lungs. He said that could definitely explain the intense reaction in my heart and body. He said a small clot wouldn't show up on CT. 

The second possibility is that the nurse pushed an air bubble in through the syringe 😳 and sent air through my blood stream to my heart or lungs. He said people can actually die from air bubbles, but if it's small enough, the body can work it out. He said that would explain the way my heart and body reacted.

He says that with this event, plus my frequent arrythmias and previous pericardial effusion, he wants to be thorough, and make sure we aren't missing anything. So he's ordering an echocardiogram, a cardiac stress test (treadmill), and a two week heart monitor to see if we can catch any of these arrythmias and see what they are. He's not expecting to find anything, but just wants to make sure.
Dr. Kartoumah has already been wanting this central line out, but he said with the fact that my subclavian clot is still present, and the possibility that it was a small clot in my lungs on Monday, he's scheduling to remove this line ASAP after my last treatment. If the neurologist wants more treatments, he's going to insist we give this vessel a rest. So the line is coming out next week no matter what!! Hooray!!

NEXT STEPS: Two more treatments, remove central line, then MRI scan, PET scan, appointment with neurologists, discussion with neuro oncologist, and make a decision about the brain biopsy. And the cardiac follow ups. I've come so far, but can't wait for this road to get where it's going so I can move on!!

Pic: Plasmapheresis

All my blood lines 😝 Bleh.

Treatment Update

UPDATE: Treatment #17 out of 27 today. Everything is going fine, I bounced back pretty fast from my last two treatments, so I was grateful for that! (Thanks for all the prayers!) My platelets and other blood counts have been dropping low, so I'll be getting donor plasma transfusions at the end of every treatment now. I've gotta say, donor transfusions super creep me out, but they help me feel better and bounce back faster, so this will be a good thing. Thanks for all the well wishes and prayers, it means a lot! 10 treatments to go!

New Round of Plasmapheresis

My docs say that since my brain lesion stopped growing during the last round of treatments, there's a chance it was actually working. The docs want to be more aggressive with the treatments to see if we can shrink the brain lesion. If not, we will probably have to do the brain biopsy to figure out what's really going on there.

I will have treatments 3x per week (😳) for 4 weeks. I was really struggling to handle treatments twice a week before, so this is going to be rough. I'm trying to have a good attitude, but honestly I'm feeling very overwhelmed. If anyone wants to come visit during my treatments, drop me a note or a text! I'll be at Chandler hospital every MWF from 12:30-5:30. Yes, I will practically be living at the hospital 😝

For those who pray, can you pray specifically that I can feel brave and stay positive? I'm really struggling with those two things at the moment. Not feeling brave. Not feeling positive. Gotta shape up!! Also if you guys could pray for my safety in these treatments, as they are a bit riskier with my blood thinners and resolving blood clots. I had my first treatment today and my heart rhythm was jumping all over the place. My body just isn't handling this as well as it did before. Also these treatments remove all of my antibodies, which makes my immune system useless if I catch any sort of bug. I'm sure it will all be fine, but extra prayers would be so great!
Thanks everyone for your love and support!

Blood Clot & Hospital Stay

Wednesday, June 22

Hanging out with the greatest husband in the world ❤️ We're at the hospital, I went in for chest pain and pressure and found out I've got a blood clot (DVT - deep vein thrombosis) in one of the vessels in my chest. They are treating with blood thinners and keeping me until at least tomorrow. They say I'll probably have to be on blood thinners for a year to prevent more clots. Not sure how blood thinners play into the brain biopsy plans. Consultations with specialists tomorrow, so we'll see.

Thursday, June 23rd

Update: Still in the hospital, they aren't letting me out today 😩 They said my blood clot is occlusive (meaning it's blocking my entire subclavian vein) so that's why I'm feeling so much pressure and pain. Blah. The pressure is now in my neck too (it wasn't yesterday) so it's pretty uncomfortable. It sort of feels like I'm being strangled on the right side!!
I saw three of my docs today, still waiting for input from my neurologists on how this will affect my brain biopsy plans and what they think about everything. Sounds like the minimum length of time they want me to be on blood thinners is three months. So unless the neurologists feel this treatment could compromise my lesion, or have some other plan, the biopsy will wait at least that long. For now, they have me on max doses of heparin and warfarin (blood thinners) trying to get my blood into a safe range. We are also trying to decide if we need to remove my central line (which would mean canceling my final plasmapheresis treatments and risking the possibility of having to place another line later on.) They are also debating which blood thinners to send me home on when the time comes. Lots to figure out still. Thanks everyone for your thoughts prayers, it really means so much and helps me to stay brave! (trust me, in some moments I feel like being a total baby!! And in some moments I am 😂) Love you all! Xoxo

Friday, June 24th

I'm too tired to summarize the updates, so for those who are interested, here are the full updates from my texts to family today:

MORNING UPDATES

Looks like I'm not going home today 😞 They stopped the coumadin last night unexpectedly. The hospital doc says that was for three reasons:

1. They are most likely removing my central line today and don't want the extra risk of bleeding with coumadin. Waiting on input from neurologists to make this decision final. Once they decide, they'll do it.

2. They are switching me from coumadin to pradaxa (another blood thinner). Seems like the better choice for several reasons.

3. There are some special lab tests dr. Dhillon wants to run that would be affected by coumadin.
They won't give me my first dose of pradaxa until after they remove the central line. So deciding on that and getting that done will come first. Then they want to watch me for a day after they give me the first dose of pradaxa to make sure all goes well. Then they will send me home on pradaxa for three months.

I'm still on the constant heparin drip and they will continue that until pradaxa starts. They said they will stop the heparin drip while they take out the central line. Doc says I should be getting out of here "in a day or two" 😞

EVENING UPDATES

1. Dr. Dhillon stopped by. He talked to Dr. Dardis (neuro oncology). Dardis does want a PET scan ASAP, but it will have to be outpatient because they don't do PET scans here. Dardis says biopsy is not off the table, he still wants to look into how urgent this is. Dr Dhillon said there is a way to get me off the blood thinners for a few days, get my levels to normal, do a platelet infusion and do the biopsy safely. So in an emergency (which this is not yet) we can still do the biopsy. He says ideally we will still wait three months to do this, but if Dardis feels it's urgent we can do it sooner. Dardis signed off on the blood thinners in general, he doesn't believe it will cause any problems for my lesion.

2. Dr. Dhillon says I have to go home on LOVENOX shots!!! 😩 He says the textbook situation is to be on heparin or lovenox for five days before starting pradaxa (they are different kinds of blood thinners). He said for some people he might flex that protocol, but he laughed and said with me he's not going to risk anything and we're doing everything by the books since I'm complicated and sensitive to everything. So it will be lovenox three days at home and then Pradaxa. He says he's comfortable with me starting pradaxa at home. If there were any new symptoms that first day I would just go to the ER. But he thinks it will be fine.

3. I told Dr. Dhillon about how the pressure and pain suddenly moved into my neck yesterday and has stayed there since. He was shocked and said its the first he's heard of this change. I was telling the nurses ALL day yesterday to ask the docs about it, and make sure they weren't concerned about it. I also told him how my chest and shoulder and neck have felt hot all day (in addition to pressure and pain). He says these newer symptoms could mean the clot is growing or moving or something. He is ordering another ultrasound of my neck ASAP just to be safe. Hopefully tonight. Might just be progression of symptoms from the clot we already know about but he said it is definitely suspicious. He also felt my neck and agreed it was hot to the touch on only the right side. As of this evening my neck is also noticeably swelling 😕 blah.

4. Still trying to decide if we should remove my central line. We've been trying to reach Dr. Sivakumar (the doc who originally ordered the plasmapheresis) without any luck so I told Dr. Dhillon we should just decide. I only have two plasmapheresis treatments left, so it doesn't feel like a big deal to just skip them, especially since my brain lesions are unchanged from the treatments. We agreed that he would schedule my central line to be removed tonight or tomorrow.

5. AFTER my talk with Dr. Dhillon I finally got a call from Dr. Sivakumar (he was apparently calling me from out of the country) who said absolutely do not remove the central line!! 😐
He wants to do an extra month of plasmapheresis. He says he always wanted to do three months from the beginning but my insurance only approved two. He's going to push my insurance to approve another month. He says we really need to give it three months before we can say it didn't work. He says he's comfortable doing the treatment even with the clot there. He says he'd actually be worried about taking the line out with the clot there, because it could jar the clot and send it somewhere else. Ughhhh. I don't know what to think!! Who is right?? Is it dangerous to leave it in or dangerous to take it out?? I'm going to make the docs talk it out and come to a conclusion.

6. Dr. Dhillon says I should get out tomorrow unless there's something new on the ultrasound.

Saturday, June 25th

We are leaving the central line in, and my neurologist is going to push my insurance for another month of plasmapheresis.

The new ultrasound showed "slow flow" in my jugular vein, which means there could also be a smaller clot there, but that doesn't change anything, because we're already doing the treatment for that, and it should only get better from here. The ultrasound also showed that the subclavian clot is getting smaller with treatment, so that's great news!! 

Follow up will be:

1. PET scan and decisions about biopsy with Dr Dardis (neuro oncologist).
2. Appointment with Dr. Dhillon (hematologist) in two weeks to check on blood thinners and talk about follow up ultrasound of my clots.
3. Dr. Sivakumar will push for an extra month of plasmapheresis from my insurance.
4. I'm going home on two days of lovenox shots 😳 then transitioning to pradaxa. I will be on pradaxa for as long as I have my central line, and then for three additional months after that.
5. They found an abnormal result on my platelet aggregation test (one of the tests Dr. Dhillon ran last week.) Dr. Dhillon says he reviewed the results with a pathologist and neither of them have ever seen results like this (I'm starting to think I have some mystery disease from another world!) He says we will repeat that test after the blood thinners are done.
6. My symptoms should start improving sooner than they thought (they predicted 2 or more weeks) since the clot is already shrinking. Yay!! It's already feeling a little better.

And....I'M GOING HOME TODAY!!!! Can't wait to sleep in my own bed! Thanks to my amazing family for taking such great care of me this week, and always!!! And thanks to everyone for your love, prayers, and support, it means so much

Crazy Week - Tumor Board, Surgery, Biopsy Talks, Treatments

It's been a really crazy week. There's so much going on, it's a little hard to keep track. Honestly, that's half the purpose of this blog, to help ME keep track of what's going on!! 😝 Here's the update:


MONDAY - Unplanned Surgery

Two things. First, Monday was Tumor Board. A committee of doctors (neurologists, oncologists, pathologists, etc) at Barrow Neurology looked over my scans to determine what they thought was going on, and how we should move forward. We didn't get results Monday, but trust me, we were thinking about it all day, and praying this would bring some answers.

The second thing about Monday, was an unplanned little surgery 😞 The incision in my neck (where they inserted my central line/port, before tunneling to my chest) wasn't healing well. I finally went in to have them take a look. I expected advice about neosporin, maybe an antibiotic, keep it dry....I dunno, but I wasn't expecting to see the operating room again! The doc was pretty casual when he heard what I came in for, but when he looked at the incision he got very serious. It was open to where you could see the internal stitches. (so creepy!!) He clipped them, and the whole thing fell open 😳. It hadn't healed at all. He said it could have to do with my overall disease (whatever that is!) but my body isn't healing the wound, despite the stitches and constant steri strips. He had to cut out the bad scar tissue, create new edges, and put in a new set of stitches to see if we can get it to heal better this time. At the end of that day, I was drugged up, in pain, and exhausted. Totally forgot about Tumor Board by the end.







TUESDAY - Tumor Board Results

On Tuesday morning I got a call from a neuro-surgeon's office stating that my neuro-oncologist had asked them to schedule me ASAP for a biopsy consultation with Dr. Nakaji (neurosurgeon). They said they had an opening Thursday for the consultation and an opening Monday for a brain biopsy......ummmmm. I think they forgot to tell me some things!!!

I called to get the official Tumor Board update from my neuro-oncologist, but I guess it was pretty clear what they were thinking 😕 Dr. Dardis called me back later in the day with the report. He said the committee is strongly recommending a biopsy. It is their opinion that this could definitely be a primary brain tumor, and we should get ahead of this. They specifically stated that they felt this could be an astrocytoma or oligodendroglioma. They agreed with a previous doc that it could also be Lymphomatoid Granulomatosis, but they said we can't diagnose this based on scans alone, and given that the treatments are vastly different, we can't make a treatment plan without more information. The doc reiterated that this lesion is unlikely to stop growing without an intervention, and it's in a really bad spot to be growing.

Regarding my plasmapheresis treatments, the Tumor Board was not sure if antibodies could be causing my brain lesions. They said those antibodies definitely can damage the brain, but they thought we would be seeing more diffuse damage across the whole brain, rather than lesions. The original doc is aware of this, but he says lesions are still possible, and he felt strongly about pursuing this treatment before doing anything more dangerous or invasive. Fortunately, the neuro oncologist said he is totally fine waiting until after the plasmapheresis and the follow up MRI, just to see if there is any change on my brain scans, so I can test out this theory first. (Either way, he agrees that plasmapheresis is a good idea for treating my abnormal antibodies and neurological symptoms, the only debate is whether or not it will also treat my brain.)

I keep hearing the same advice over and over, that I need to stay open to the idea of a biopsy. It is starting to sink in that this might have to happen. I've been warned for five years about the risks of a biopsy in this location of my brain. It's hard to get up the courage to accept those risks (paralysis, sensory loss, or possible loss of speech). Good thing we have some time. Suddenly I'm feeling grateful that my plasmapheresis treatments will last two months, so I have time to settle with this and make a decision!!


WEDNESDAY - Plasmapheresis #3

 On Wednesday I had my third plasmapheresis treatment. I felt really great in the two days leading up to the treatment, but man this one hit me hard!! Halfway through the treatment I started feeling body aches, headache, just an overall faint feeling. It's been a day and a half and it still hasn't gone away. I went to the doc this morning (Thursday) and my blood pressure was pretty low, so maybe that's part of it. I dunno. It's been a rough couple days though.
 


 


THURSDAY - Biopsy Consultation

Today is Thursday, and I met with Dr. Nakaji, the neurosurgeon this morning. Something to be aware of is that Dr. Nakaji has followed my case since the beginning. He was the very first doctor to tell me we should wait on a biopsy, and save it for a last resort. He and Dr. Okuda (my former neurologist) were fierce in protecting me from a biopsy, even when other docs were ready to go for it just to solve the mystery. So Dr. Nakaji is someone I really trust on this matter. He was not part of the Tumor Board, so I was curious to hear what he would say.

Basically, he echoed everything I have been hearing from the other docs. He said this lesion is clearly "more advanced" now and that it won't likely stop growing without a targeted treatment plan, and that we can't make a treatment plan without a diagnosis. He said we absolutely made the right decision to wait on this four years ago, but now its time to seriously consider a biopsy. He said all those risks we have been worried about with the biopsy could happen anyways, if he lesion keeps growing in that sensitive area of my brain. I asked him what he thought if we decided to keep waiting, and just watch it really closely....he said we have already done that, and we are past that point.

He said that even though the damage could be terrible if there were a complication, he said the actual risk of having a complication with a needle biopsy is only like 3%. He also said that there is an area where he can get a sample that is closer to the sensory cortex, rather than the motor cortex, where side effects would be more likely sensory (numbness, tingling, etc) versus motor (muscle weakness or paralysis). He explained several other precautions he would take to limit the risks, including smaller biopsy sample, avoiding the center of the enhancement, and making sure I have a strong platelet counts to avoid a bleed.

He said the biggest risk of a biopsy is not getting an answer. I guess sometime the tissue sample can be abnormal, but completely inconclusive...that sounds like something my body would give us!! That would be so frustrating. There's so much to think about with this decision.

I have to say, I was expecting him to say that we could keep waiting, or to say that everyone was over-stating the matter here. But he pretty strongly recommended that we do the biopsy. He said it's not an emergency, so he is fine waiting for the plasmapheresis to wrap up. He said it's "not fast urgent, but it is slow urgent"...haha. So we have some time. But not forever. Ugh. So much to think about.


FRIDAY - Primary Doc & Plasmapheresis #4

Tomorrow I have a morning appointment with Dr. Chamberlin, my amazing primary care doc. He has been with me since the beginning, and always does a great job at helping me organize things, think through my decisions, and clarify opinions across different physicians. I am interested to hear his thoughts on all of this recent chaos.

I also have my 4th plasmapheresis treatment tomorrow. Really hoping I will handle this one better. It's supposed to be helping my symptoms, not giving me new ones!!

Oncologist Appointment

Yesterday was my first time meeting with an oncologist. It was a little intimidating, but my docs are trying to be very thorough right now, and this is one step we can't skip. With my brain lesions active and growing, it is more urgent than ever to find out what is causing them, or what they are.

The oncologist agreed with every other doctor, that this is something extremely rare. He said it doesn't look like anything he's seen before (that's sort of good news, coming from an oncologist!) He did confirm that my brain lesion grew between the Nov 2015 scan and the Jan 2016 scan, which is discouraging. He said that it is unlikely the lesion will stop growing without an intervention, or it would already have done so. He said at some point it is going to be absolutely necessary to have a diagnosis, so we can decide what that intervention should be. He asked that we stay open to the idea a biopsy, even though it is risky (my largest brain lesion is in a very dangerous spot for a biopsy). He's not the only one to say this to us recently, but it's a scary thought. I have been told there is a strong chance of paralyzing something with this biopsy. He went on to tell me the risks of not doing the biopsy, if it comes down to it. He said if the lesion continues to grow, I am at risk for losing muscle control on my right side, or losing the ability to speak. He also listed several other possible complications, but I sort of tuned them out after he mentioned my speech. It's crazy to even think about. It just feels like that couldn't actually be a possibility. He did follow this up with the reassurance that nothing is happening fast here, so we have some time to think, but he said we need to figure this out sooner than later.

THOUGHTS ON PLASMAPHERESIS

We talked about the theory of autoimmune encephalitis and the current plasmapheresis treatments. He said he absolutely agrees with the treatments, even if its just for treating the antibodies and the symptoms. He says my VGKC antibodies are more than three times the highest range of normal, and they should be addressed to see which symptoms that rules out. He agrees that there is a chance that this treatment will also improve my brain lesions, and said he thought it was "sensible" to try this treatment before considering the biopsy. So he's on board. We will do the treatments, then do the MRI to see if anything changed, and go from there.

TESTS

In the meantime, he says that he wants to do a full body PET scan and a brain PET scan to see if there are any clues to other growths, whether granulomas or any signs of cancer 😕 He says we need to stay ahead of this and continue collecting information and getting opinions.  He also ordered labs to look for inflammatory markers that he said will give him clues from an oncology perspective.

TUMOR BOARD

The doc is going to take my case to a panel of neurologists, radiologists, pathologists, and oncologists, who will look over my scans and discuss their ideas of what it could be. (They call it Tumor Board) The panel will come to a conclusion on what they think it is, and what they think we should do about it. I am so interested to hear what they will say! This is actually the reason my neurologists sent me to Barrow for this consultation, because they wanted a "Tumor Board" to be done on my scans. So we will see what they come up with. I highly doubt they will recommend a specific diagnosis (if history tell me anything) but I am very interested to hear what they think. It's really cool that they do these collaborative reviews. I will post updates when I have them.

RECENT MRI IMAGES

Plasmapheresis Treatment #1

Monday was my first plasmapheresis treatment. I am still feeling extremely tired and faint. It was a reallllly long day. The treatment is supposed to last 4-5 hours, but it took 8! We had a slight problem with my platelet counts being too low and my blood not clotting. The blood clotting numbers (PTT value) was so bad that we had to do a donor plasma transfusion. The whole day was exhausting and overwhelming. I seriously feel like I used to be so much braver when I was younger. Maybe I am just remembering it wrong, but I don't remember feeling this worn out or this scared in the past. It was really nice, my mom got to be there with me the whole day. James had to work, sadly, but he's been with me for several other things recently, and he will come with me to my next treatment on Saturday. I'm so glad this one is done. Hoping things get easier and better from here.

 

 

 

Central Line Placement

Yesterday I got my central line placed, in preparation for my plasmapheresis treatments. They tried to do a conscious sedation with a local anesthetic, but basically, neither of those two things worked. I could hear and feel everything they were doing. They gave me like 5x the normal lidocaine shots, but the area wouldn't numb up. So that was lame. But anyways, it's in. I have been surprised by how much this hurts. Hoping it gets better soon.

CENTRAL LINE PLACEMENT: 

Treatment APPROVED!!

Well, after weeks of appeals and trying to get my insurance to cover my plasmapheresis treatments, they have finally been approved!!!

Now we can see how this treatment will affect my symptoms (muscle weakness, muscle cramps, muscle stiffness, fatigue, generally feeling sick) and most importantly, we will get to see if it shrinks my brain lesions. For sure, the strange antibodies I've got are causing my symptoms, but we aren't sure if they are causing my brain lesions. Either way this treatment will be a good thing, but we are REALLLLLY hoping it will be the trick to helping my brain lesions. If my brain lesions shrink, then it means this is an autoimmune process attacking my brain. If not, then we are back to the drawing board to determine a diagnosis.

WHAT IS PLASMAPHERESIS?

Plasmapheresis, or Plasma Exchange is a process where they remove plasma from the blood supply, for the purpose of removing harmful antibodies that live in the plasma. To do this, they will remove my blood supply, filter out the plasma, replace the plasma with albumin, and then return my filtered blood back to my body. All of this happens simultaneously, so that there is never too much blood outside my body at once. There is a giant machine that spins and filters the blood, and combines it with the plasma replacement. I've actually had this treatment once before (only for a week). I tolerated it pretty well. It makes me feel very tired and faint, but the end goal is that it will make me stronger, as it removes the harmful antibodies that are causing damage and making me sick.

TREATMENT PLAN

This time the treatments will be twice a week for eight weeks. Because there will be so many treatments, we are going to place a central line in my chest that can be used instead of a temporary jugular IV, like I had last time (that one wasn't fun either!! 😝) At the end of the treatments, we will repeat my MRI to see if there has been any change to my brain lesions. If it has, then it will confirm that the antibodies are attacking my brain, in addition to my body. If not, then we have to assume to two processes are separate, and we have to consider other possibilities for my brain lesions.

Either way, I am grateful these treatments have been approved. Sadly, it's still going to be very expensive (over $3,000) for all the treatments, but if my insurance hadn't approved this, we couldn't do it at all. So I'm really grateful for that. I am praying this treatment will work! Thanks everyone for your support and prayers, it means so much to us!

Dr. Donlon Update

I met with Dr. Donlon (neurologist) this week. She said based on the fact that my brain lesion is growing and changing, we need to stay open to the idea of a biopsy (my brain lesion is in a very dangerous spot for a biopsy, or we would have already done it). She agrees that it should be a last resort, but reminded us that it might come down to that, and suggested we keep an open mind.

She said she said that while the autoimmune encephalitis is a valid theory, and we should absolutely test that theory first (try the plasmapheresis and see if it shrinks my brain lesions) it is still very possible that this is a rare tumor. She is sending me to see a neuro-oncologist at Barrow Neurology for an opinion, just to cover our bases and stay ahead of this. This will be my first oncology consultation, so it's a little unnerving. But I agree with being proactive. We will be scheduling that appointment asap.

Half Diagnosis?

I have put off writing this post because it's going to be complicated to explain the diagnosis we are talking about. But I'm going to try, so bear with me because I have no idea how to write all this in simple terms.

So here is the situation. I test positive for anti-VGKC antibodies. Two different labs have confirmed this result, including the Mayo Clinic lab. So what does that mean? First, I have a condition called Peripheral Nerve Hyperexcitability (mostly affects nerves and muscles). Or rather, I have a condition that falls under that heading. There are a few possibilities--Neuromyotonia, Isaacs Syndrome, and Morvan's Syndrome. There isn't any way to know for sure which one I have, but they all cause similar symptoms, including muscle weakness, muscle stiffness, muscle cramps and twitching, delayed muscle relaxation in hands, fatigue, fuzziness, and several other things.

So that would explain most of my symptoms. It is basically an autoimmune condition that causes neurological symptoms. It's interesting, because all along we have thought my symptoms pointed towards and autoimmune condition, but then also seemed like a neurological condition. Apparently it's both.

So the antibodies definitely explain my symptoms. But the question is whether or not they also explain my brain lesions. We aren't sure about that, but it is possible. There is a condition called Autoimmune Encepalopathy that can be caused by those VGKC antibodies. They say my antibody levels are more in line with the systemic (full body) version of the disease, rather than the brain version of the disease, but it is still a possibility. At this point, Autoimmine Encephalopathy seems just as likely as any of the other options, so my doctor wants to move forward with treatment to see if it will prove a diagnosis. The plan is to try a treatment for three months and then repeat the MRI to see if the brain lesion has shrunk or stabilized. (Either way, it will treat my symptoms, which could be amazing!) My doc first tried to get IVIG treatments approved--those are live antibodies that help to neutralize the autoimmune process. My insurance denied that, so our next option is trying to get plasmapheresis treatments approved. That is a treatment that basically removes antibodies from my blood so that hopefully my immune system will have a reset and cause a remission of the autoimmune process. We are hoping and praying that my insurance will approve this, because if they don't we may be out of options. We still can't do a biopsy of that brain lesion, so we have very limited options for diagnosing that side of things.

Hopefully all of this makes sense, I can't even tell. After months of tests and painful, expensive procedures, at least we have half of a diagnosis. I am really grateful for that. Also, my symptoms have been spontaneously improving, and I am sooooo happy about that!! Thank you to everyone who has been praying for blessings and help for us, we are definitely feeling the support. Hope you are all doing well! Xoxo

Test Results - ALL - Feb 2016

Sorry for the slow updates, we have been moving and its been a huge overwhelming project. We still have boxes everywhere, but at least everything is here and we are making some progress with the unpacking. I have had a couple really amazing weeks, health wise, and I am soo grateful for that! I've had more energy, stronger muscles, less pain, fewer sick days, it's been amazing!! Some days I am standing in my kitchen doing dishes, and it feels sooo good to be there! Who knew it was possible to feel grateful to be doing dishes?? It's pretty great. I am feeling very blessed, because we definitely need this extra energy right now. We haven't been doing any treatments or anything, I am just spontaneously having good weeks, after FOUR months of being down and barely able to do anything at all. We are guessing this is a relapsing-remitting condition, because there isn't any logical reason I should be improving right now. My stress levels and exhaustion levels should be worse than ever with this move, but instead, I feel pretty great. I'm a blessed girl. Thanks everyone who has been praying for miracles like this :)

Things are still moving forward with the search for a diagnosis. I think we may have found something! (suspense...) For right now though, I just wanted to post the list of results. I will come back soon with an explanation of what it all means and what my docs are thinking about my diagnosis.

Test Results

 

CT Angiogram (Jan): suggested either a brain tumor or a vascular lesion. Inconclusive.

MR Spectroscopy (Jan): suggested either a brain tumor or an inflammatory lesion. Inconclusive.

T3 MRI Brain (Jan): High resolution MRI shows I have 3 brain lesions. The one large lesion and two smaller lesions.

Spinal Tap (Jan): We are still waiting on the spinal tap results from Mayo clinic (its been a month!) We have one panel back, but we are waiting on two more. The panel we have shows oligoclonal bands (5+) which suggests an autoimmune or inflammatory process.

Angiogram (Jan): The most surprising result yet, the angiogram ruled out a vascular lesion. Docs said the vessels in my brain are perfect, flawless.

Mayo Clinic Labs (Feb): This test confirmed the presence of the VGKC antibodies.

Leg MRI (Feb): shows structural issues with my hip, bursitis, and tendonitis, possibly contributing to some of my right leg issues. No evidence of primary muscle disease.

Spinal MRI x2 (Feb): clear, no lesions or malformations.

MRI Brain (Oct): Shows my brain lesion has grown since prior scans.
Muscle Biopsy (Oct): Shows muscle denervation and several other non-specific abnormalities
EMG testing (Dec): Suggested muscle disease. Non specific abnormality.

Athena Diagnostics Labs (Dec): VGKC Antibodies turned up positive.

Test Results - Angiogram

The angiogram ruled out a vascular lesion. I don't even know what to think about that. In some ways its a relief, because a vascular lesion would carry a constant threat of hemorrhage, and a growing vascular lesion would require treatment. But ruling out a vascular lesion puts some of the scarier options solidly on the table, and that's a little overwhelming if I really think about it. (So mostly I just don't think about it! Haha!)

After the last two tests, my docs were all leaning towards a vascular lesion, so we are pretty stunned that this is off the table. The neurologist performing the angiogram said the vessels in my brain are completely perfect, with no evidence of vascular malformation or any vascular abnormality at all. He said my vessels are "pristine." So a vascular lesion is completely out.

We are still waiting on the spinal tap results, hoping they will be in within the week. Hopefully that will give us some clues about what's these lesions could be.

Possibilities on the table are inflammatory lesion (like neurosarcoidosis), a tumor, an indolent lymphoma, or an autoimmune encephalopathy. And who knows what else. The characteristics of this lesion are unusual for all of these conditions. It doesn't look or act like a textbook case of anything.

The radiologist from Texas said, "Whatever this is, it is either extremely rare, or it is a rare manifestation of something more common." I think that pretty much sums up the situation. He also said,

"I would like to show [your scans] to a world-famous neuroradiologist. She may remember me from Harvard, and we both went to Stanford. She has written the main textbook for neuroradiology and was the president of the American Society of neuroradiology. She was at the armed forces Institute of pathology, where they saw very strange cases from all over the world. She is also LDS. She may have seen something like this before, and it is worth a try before you do any more invasive studies."

It's such a blessing to know someone with that connection, and so sweet of him to offer. There really are so many blessings along this crazy road. I'm praying something here will lead to answers. A diagnosis would be amazing. I'm so ready to move on to the solution phase of things. Thanks everyone for your love and prayers!

Call with the Doc

Today my neuromuscular doc (Dr. Sivakumar) called me. It's the second time he's called to discuss the details of my case. I don't think a doctor has ever done that. I'm starting to feel very hopeful, because he is very smart and he's really focusing on getting answers for me. I think there's a good chance he'll solve this! Really hoping so. Here's what he had to say.

First off, he called to answer some questions I had asked the nurse about labs he ordered (normally the nurse just calls you back with the answer). He wanted to discuss, because he wanted to explain why they are so important (they are going to cost almost $1,000 because they have to go through the Mayo clinic and its out of network. Ouch.)

He said if the angiogram comes back negative (disproving a tumor and disproving a vascular lesion) then he would likely classify my condition as a non-paraneoplastic autoimmune encephalopathy. Basically, that's a general term that means disease of the brain, caused by a non-cancerous, autoimmune condition. He mentioned several specific antibodies he wants to look into, including the anti-VGKC antibody test that recently turned up positive. We have to repeat it, because we can't call it a true positive unless it turns up twice, at two different times, in two different labs.



Interesting...

The most interesting thing he said was that he has been researching those anti-VGKC (voltage gated potassium channel). He said if this is truly positive it could explain everything. He said that a condition like this could account for all of my symptoms AND my brain lesions. He said he previously knew there were cases with brain lesions, but he had always known them to be symmetrical. He said he has be researching (so amazing!!) and there are definitely cases that present with asymmetrical brain lesions. He said the fact that my three brain lesions have been enhancing for years is also consistent with this diagnosis. So he said if the angiogram doesn't reveal a tumor or vascular lesion or lymphoma, and if the spinal tap reveals nothing, then he would be inclined to think this was the diagnosis (an autoimmune encephalopathy, caused by those anti-VGKC antibodies). I am sooo happy that someone is considering what could tie all this together, and spending time researching. It makes me feel so much better about how things are progressing. This doctor is an answer to our prayers, a whole new level of specialization and care. Thanks to everyone who is praying for us! <3


Possible Treatment...

He says the tests tomorrow (angiogram and spinal tap) are very important (obviously) because they will hopefully confirm or exclude the diagnoses of tumor or vascular lesion, etc.

He says if those two things are ruled out, and if my blood panel confirms the VGKC antibodies, he will move to start me on IVIG treatments for three months. (IVIG, He said in cases of people with this VGKC condition that have reacted poorly to steroids (doctors never catch this detail...steroids make my condition so much worse!) He said that in those cases, patients will usually respond well to plasmapheresis (plasma exchange--i did this, with no improvement), or IVIG treatments (an . He says he would like to try me out on IVIG treatments for three months. But he says we have to justify it to the insurance, and one of the ways we need to do that is running that expensive panel of labs to prove this is what we are dealing with. He said if this is the diagnosis, he is quite certain this treatment would help, with the growing brain lesion and with the symptoms.


Tomorrow

Feeling really anxious for my tests tomorrow. Just the idea of the angiogram creeps me out. And the spinal tap is not my favorite, I've had one before and it gave me a migraine for five days. I thought I was going to die from a headache. I'm sure this one will be better, but I'm just getting those pre-test nerves. Ugh. Hopefully we'll get some answers. More soon. I'm grateful for this doctor who is so invested in my case. I'm feeling really confident that he's going to figure this out. Can't wait!

Diagnosis Discussion & Some New Tests

I met with the neuromuscular specialist last week on Thursday. The great news is that I passed all of the neurological tests, meaning there is no complete loss of nerve function anywhere, and no complete disconnect between my brain and muscles. So that's the good news :)

The doc wasn't able make any predictions about my diagnosis, but he does feel the it would be very unusual to have two very rare conditions, and so he wants to consider the theory that everything is connected.

1. Lymphoma?

He said that from his perspective, this could still be an indolent (not aggressive) form of lymphoma, or some related condition. He mentioned lymphocytic granulomatosis and neurosarcoidosis. He said these conditions could cause all of the generalized muscle symptoms, fatigues, and sickness that I have been experiencing. He said this kind of condition can also attack the nerve roots, causing the neurogenic changes we saw on the muscle biopsy.

2. Spinal Tap
 
He said that if this is a lymphoma, or some kind of tumor, there is a good chance that a spinal tap would give us clues about that. We did a spinal tap in 2011 and it showed abnormal antibodies (oligoclonal bands) which are a marker for MS (ruled out) and lymphoma. He wants to see if those oligoclonal bands are still there. There is a small handful of other conditions that occur with these bands, so if they are present, it could be a valuable clue.

If that brain lesion is a tumor, there is also a chance that the spinal fluid could give us a clue about that now, after so many years. So we are doing a spinal tap next week.

3. Vascular Lesion?


We talked about the possibility of a vascular lesion, and he agreed that if this is a vascular lesion, then that means all my muscle and neurological symptoms are not connected to the lesion.

He said the fact that the lesion is growing makes it very important to find the diagnosis.

4. Brain Angiogram

The next step (which has been suggested by three neurologists now) is a brain angiogram. Basically, that is where they make an incision in your leg, and thread a catheter up to your carotid artery and brain, where they will directly inject a dye and take pictures of what is there. So they will be putting a thing inside my brain. Soooo creepy. Ugh. Fortunately, I will be sedated while they do this. This is also happening next week.

5. Vascular Surgeon

The doc said if this test doesn't give us clear answers, then we will likely need a tissue sample, if we are going to get a diagnosis. He is referring me to see Dr. Robert Spetzler, who is (according to this doc) the top vascular surgeon in the world, and he is right here in AZ (awesome!) He said this doc will be able to tell us if there is any safe way to get a piece of one of these lesions, without risking a hemorrhage from the abnormal vessels.

He also said that if we are able to confirm that this is a vascular lesion, this is the doc I would want to treat it. The angiogram will hopefully give us the data we need to plan a treatment. The treatment would likely include tying off the blood supply to the vascular lesion, so it will stop growing, leaking, stealing oxygen...all the crazy things it could be doing to make the scarring and swelling in my brain grow.

6. Muscle MRI

The doc says a closer look at my muscles could better explain the muscle weakness and the biopsy findings of dying nerves. He ordered a muscle MRI to look into this.

7. VGKC Labs 

One of the tests that has come back positive is the anti-VGKC test. This could be from a paraneoplastic cause (cancer marker) or it could also be from a neurological condition similar to neuromyotonia. That would actually explain all of my symptoms, so its definitely on the list of possibilities.

I will write updates as I am getting test results. Thanks everyone for your prayers. 

Test Results - CT Angiogram, MR Spectroscopy, 3T MRI

It's been a crazy, exhausting month so far. I've been to so many tests and appointments in the past few weeks, I can barely keep track. Also, we are moving. Our landlord let us know last month that they would be selling the house. The timing couldn't possibly be worse. Life is just a little bit overwhelming right now. I know we'll get through, but I can't wait until the day when this stage is behind us. Thanks so much to those who have been helping us out <3

So far, my test results are a mixed report. There is one diagnosis they were sure of. My head cold! Hahaha, I was dying, all of the head scans from this past week mentioned my sinus inflammation and pressure!! In very technical terms too, it was so funny. One report wrote out the specifics of my sinus troubles and then said, "recommended clinical correlation for acute sinusitis." At least they got that diagnosis right!!

Ok, for the real results. Like I said, it's a mixed report. There is strong evidence for a vascular malformation and strong evidence for a neoplasm/tumor. Which evidence is most accurate or most important? We're not sure. These reports have also raised the possibility of an inflammatory lesion. That's the gist of what we know right now. Basically, nothing. Sadly. There will be more tests to come. 

For those who want details, here are the report findings...



CT Angiogram

Shows strong evidence of a vascular lesion, but its inconclusive.

The report says, "CT angiogram is suggestive of several linear traversing vascular structures...Given [this report, along with] the appearance on MRI, an atypical vascular malformation is favored, with surrounding venous congestion and gliosis (scarring). Less likely considerations could include neosplasm (tumor) or inflammatory lesions."

Basically the whole report is saying it sees strong evidence for a vascular lesion, but acknowledges that it could also be a neoplasm.


MR Spectroscopy & MRI

They did the MRI and Spectroscopy scans together, so they could look at them together. This report gave a few reasons in favor of a vascular lesion, and several reasons in favor of a neoplasm (tumor). It also suggested inflammatory lesions. Here are the points they gave, in technical terms and in plain English:


1. The MRI report says, "since the last MRI of Dec 2013 there has been an increase in the [size of the lesion] which now measures 3.2 x 1.9 x 2.8 compared to 2.4 x 1.6 x 2.5 on the 2013 scan. This change suggests an inflammatory or neoplastic [cancerous] process."  That's pretty clear English, I think. As a comparison, in 2011 the largest measurements of my lesion were 1.7 and 1.3.

2. "The increase in high signal may be seen with a venous abnormality or or telangiectasia (vascular tangle) that may be secondary to venous obstruction, producing the surrounding edema (swelling) and ischemia. Basically, the increase in size could also be due to a venous obstruction, and a growing area of swelling and scarring in my brain. One doc explained that a vascular lesion could also be "stealing" oxygen from the surrounding healthy tissue in my brain, and that could be causing the increased swelling and scarring too.

3. The Spectroscopy scan measures chemical signatures in your brain, which gives clues about what is in there. In the area of my lesion, my spectroscopy scan shows, "slight elevation in choline and apparent elevation of lactate with stable NAA. This pattern is non specific and may be seen with inflammatory or neoplastic (cancerous) lesions." This kind of makes it sound like a vascular lesion is less likely. But again, the whole report goes back and forth.

4. "As suggested in the prior reports, the complex curvilinear pattern of these three enhancing lesions suggests a vascular lesion or tumor and ectasia (distension).  So helpful. Vascular or Tumor. Good thing they brought this up.


5. "The spectroscopy pattern, as well as the recent increase in high signal raise the question of inflammatory or neoplastic process. Possibly inflammatory lesions include lymphomatoid granulomatosis or neurosarcoidosis. Possible neoplastic lesions include mid grade astrocytoma (WHO II-III) or unusual oligodendroglioma."

6. The report mentions that the enhancement hasn't grown. Just the lesion itself has grown. This is evidence in favor of a vascular lesion. If a tumor was growing, the enhancement should be growing too. Or at least it usually does.


7. The MRI shows "Two smaller, stable enhancing lesions in the left occipital and right frontal white matter." These are the smaller lesions we were looking for. Their presence makes a neoplasm more likely, but the fact that they are stable and not growing is good news. Also, they say it's possible these could be vascular anomalies too. (Again, all evidence points towards the two diagnoses. Not super helpful.) If the small lesions had been gone, it would have made us think of MS. The fact that they are still present and still enhancing means these lesions are not MS, and it also makes them an important piece to the puzzle.


We are still waiting on results from the thoracic and cervical spine MRIs. I actually cancelled the cervical spine MRI this week because I was exhausted from everything else. I will reschedule soon. Thoracic results are pending.

It's pretty frustrating to go to all this effort, and land right where we started....vascular lesion or tumor. Next steps were discussed with the neuromuscular specialist I saw this week. I will post all those details tomorrow. I hope. Soon.

Thanks everyone for your support and prayers. I have had some really unexpected and unusual bursts of energy this week (VERY helpful for the moving project!) and I feel like it must be a result of everyone's prayers. God is listening, thank you all so much <3 

A Month of Tests...and hopefully results

It's going to be a busy month of testing. We are praying every day that these tests will bring some answers. I checked in for my CT angiogram today and almost choked over the cost. I sat in the waiting room thinking of all the people have pitched in to make these tests possible right now. I couldn't feel more grateful. Thank you to everyone who has contributed, this means so much to us.

We've got a few tests down, and several to go.


Tests We've Done

MRI Brain - October
Muscle Biopsy - October
EMG Arms - December
EMG Legs - December
Athena Paraneoplastic Panel - December
 
CT Angiogram - Jan 5th (this scan is to look at the vessels in my brain, looking into the possibility of a vascular lesion)
MR Spectroscopy - Jan 7th (this scan measures the chemical signatures in my brain. We are hoping it will tell us something about that lesion and what it could be.)

Tests Upcoming  

MRI Brain - Jan 14th (we are looking for evidence of any other lesions. In the past I have had smaller lesions, in addition to the large lesion. If those lesions are still there, or if they are gone, it could be a clue to a diagnosis. They didn't show up in my most recent scans, so now we are going to search for them.)
MRI Cervical spine - Jan 14th (looking for any other lesions or clues)
MRI Thoracic spine - Jan 12th (looking for any other lesions or clues)
CT Chest - scheduling soon (checking to see if past spots in my lungs are completely resolved)
Neuromuscular Specialist - Jan 13th. (This isn't a test, but it's an important part of getting answers, so thought I would include it here. I am meeting with Dr. Sivakumar of the Neuromuscular Reasearch Center. Referred there by my current neurologist.)


Test Results So Far 

MRI Brain: Shows my brain lesion has grown since previous scans
Muscle Biopsy: Shows muscle denervation and several other non-specific abnormalities
EMG testing: Suggests muscle disease. Referral to neuromuscular specialist for a deeper look at this.

Paraneoplastic Panel: VGKC Antibodies turned up positive. These antibodies are present in a small handful of diseases, including certain peripheral autoimmune diseases. One example of that is called neuromyotonia. It actually fits some of my neurological symptoms, but it doesn't explain the EMG suggesting muscle disease, and definitely doesn't explain the brain lesion. So it might be a piece to the puzzle, but my neurologist says she wants to be very thorough before drawing conclusions from this test, since there is so much going on. VGKC Antibodies are also in a class of paraneoplastic antibodies. Meaning, sometimes they occur as a result of a tumor. Of all the paraneoplastic antibodies though, this one is less likely to be cancer related than others. So that's good. 

I will try to be good at posting results as I have them. It's going to be a busy month! Most of this testing should be done by the end of January. Really hoping we will have answers by then. Thanks everyone for praying for us, it helps so much!

CT Angiogram

My CT angiogram today was pretty painless. I have a headache from the contrast, and it was a little weird (the contrast dye is given through an IV, and it makes you feel hot, starting at your head and moving down your body. Super weird!)  I've had CT scans of my brain and lungs in the past, but this process was longer and unfamiliar, which made it a little stressful. I think I'm a little less trusting of things after my EMG testing last month!

Interestingly, I got the radiologist to discuss my brain lesion with me; after the scans he was really curious to know what it looks on MRI. He was asking several questions, so I asked if he wanted to see a picture. He said yes, definitely, and mentioned that he was curious to know where my brain lesion was....which means he may not have seen anything unusual on the vascular scans he ran. He was really impressed with the size of my lesion in pics, which also probably means he didn't see much in his scans.

I feel some small sense of victory that he may have accidentally shared a result with me, but at the same time, it would be pretty rough news if he was right. At this point, we are hoping this will be a vascular lesion, because the alternative isn't good. Anyways though, I shouldn't be trying to read between the lines on something like this. When I get results, I will definitely share.

 

Thank You

Before posting any updates, I wanted to take a minute to thank everyone who has helped us recently.

We have been so overwhelmed by the love and generosity from friends, family, and even people we don't know. It's been a very difficult few months for our family, but I can honestly say that our trials have been made lighter through the love and service and sacrifice of others. We feel so loved and so grateful! There have been many people who have taken time out of their days to help us or check in on us; it has helped us get through some very difficult days and weeks. There have also been many anonymous acts of service, and we hope you know how grateful we are. The Lord is answering our prayers through each of you, and we can't say how much that means to us.

Special thanks to those who helped us raise money towards medical expenses. To those we know, and to everyone who donated anonymously. We can't even say what a relief and blessing this has been for us. Facing all of these medical uncertainties has been hard enough, but the expenses have been completely overwhelming. If not for your help, we would be waiting on several of these important diagnostic tests. Every day that I am sick, and looking forward to a diagnosis and treatment plan, I feel grateful to all of you for helping us on the road to answers. There aren't words to express how grateful we are that each of you would help us like this. Thank you Cherise and Liz for putting that fundraiser together and for all your love and service. <3

Thank you to everyone who is praying for us. We're praying the Lord will bless each of you with the things you need too. Thank you for being the evidence of God's hand in our lives. We love you all. We’re praying for miracles.

Love,

Mandy & James