Do not be discouraged...

This is something I have learned to tell myself time and time again in the entire course of my life really, but definitely over the passed year. It was about this time last year that it all started. At some point I will reflect on the details and the emotions, I feel like everything just happened yesterday. But for now, I will reflect on the present.

Last week we received a call that Ella's immunoglobulins were low and she was in need of another IVIG. She has received 6 IVIG's so far, once a month from February to July this year. I'll be honest and say sometimes I still don't know the exact medical terms and reasons for things but from my understanding this is a good boost to the immune system. Everything else has been looking good- all labs have been great except for the immunoglobulins are a little low. So, on Tuesday of this week I took Ella for her IVIG. The infusion went smoothly, all labs looked great and she even returned back to school on Wednesday! Thursday (Halloween) was another story.

We woke up and Ella was so excited about Halloween and trick or treating and of course her costume. They were able to wear costumes to school for character dress up day and all was going well. I dropped the girls off then headed over to bible study. As soon as I sat down I received a call from the school that Ella was acting off and not herself. We thought maybe she was a little standoff-ish because of the costumes and she was nervous, etc. Well, she was getting warm and only wanted to be held. So I left and went to pick her up right away.

I admit it adds another element of anxiety when your child is sick and you worry that it could cause a flare in another disease. Even though we've been assured vasculitis is treatable, it's only normal to worry. After a long day of phone calls, pediatrician visit and more phone calls it turns out she was having a reaction to the IVIG. The frustrating part was when I spoke to the first nurse with rheumatology she was pretty adamant that it would not be from IVIG. As any parent would, I spent the better part of the day going back and forth in my head speculating what it was and worrying about she couldn't go trick or treating cause I didn't want to make any other kids sick. Finally, around 5:00 Clif was able to talk to the rheumatologist directly and she did confirm it was from IVIG. Luckily, we haven't had to deal with any adverse side effects before… so blessed by that. But this time we are. Apparently you can have headaches and nausea up to 72 hours after the infusion. Sure enough, she's had both.

Sometimes I feel like I can't handle it because I feel like I'm not doing a good job. Satan has a good way of attacking when you're down and telling you that you're not good enough, you're worthless and you're a failure. He told me that yesterday. This morning I opened my Jesus Calling devotional and the first words I read were "DO NOT BE DISCOURAGED…" Coincidence? I think not. And reading on there's a line that says "You live in a world that has been rigged to distract you." I can honestly say I've never thought about it that particular way. I've always said and known we live in a fallen world and everyone falls short of the glory of God, but never thought that because of that we live in a world that is basically assembled to distract us.

So today, I choose to be aware of the fact that we live in a fallen world… but I choose not to let it bring me down with it. I am more than blessed by the love and support from great friends and family that the Lord has put in my life. Especially my husband, Clif. He is my biggest encourager, supporter and my best friend. I thank God for giving me such an amazing husband that I do not deserve.

"God's way… is perfect!"

"God's way is perfect, all the Lord's promises prove true" Psalm 18:30

This is the very first bible verse Ella and Alyssa have completely memorized while we spent a week at Pine Cove in August.  It was a monumental week for our family for several reasons.  It was such a blessing to see Ella be able to run, jump, play, laugh and just do all the normal kid things.  It was a blessing to see Ella and Alyssa learn about God and get so excited to go to their "Cove Kids" day.  It was a blessing for Clif and I to grow together and meet some new friends.  And it was a blessing to hear goodness and truth spoken through the camp speaker that week, Chris Legg.  Him and his wife Ginger are true examples of following Christ through the wind and the rain.  The wisdom they have and the peace they posses is amazing!  Of course it wouldn't be Pine Cove without water sports, trail rides, crazy & fun counselors, games, theme nights and smores!  It's camp not only for kids but adults too!  Cannot wait to go back next year!!!

Well, I can't believe it's been 3 months since I've last posted an update.  I am clearly not the best blogger so please accept my apologies for just getting to an update.

Ella had check up appointments yesterday with both her renal doctor and her rheumatologist.  They are very pleased with her progress and everything is still headed in the right direction! Still in remission!  Vasculitis has a 50% chance of coming back within 1-2 years of diagnosis so she will continue maintenance treatment for a while.  HUGE PRAISE- the protein in her 24 hour urine collection has gone from over 1800 down to 420.  The nephrologist was excited!  However, her blood pressure is still high and she is still not really gaining weight.  All of her blood test results are normal though!  <Lots of praises on that!>  Ella will continue going to the infusion center every other Friday- she goes this Friday.  This is still for a high does of steroids (solumedrol) through iv.  Another praise though is that they are lowering her daily dose of prednisone. 

If you want to know more about her disease, below is a brochure I found with information.  

https://docs.google.com/file/d/0B-xA6db-wfStak1tbGxoSFdXMEk/edit

She continues to be an energy ball of joy!  The first day of school was Monday and Ella is able to join in the educational fun.  She is just over the moon to be back at school!  Alyssa started school back this week as well!

Excited to see what the Lord has in store for all of us this fall!

Pine Cove

REMISSION!

What a great word to hear after the last six months!  Remission… She made it!

Thursday, June 6th we took Ella in for her second kidney biopsy.  The day didn't start as perfect as we would have hoped, but every time we step into the hospital we are reminded just how blessed we really are.  Even though Ella does have an on-going, chronic condition, she is still able to run, jump, laugh, talk, walk, sing, smile and stay pretty much pain free.  You just don't realize how much of a blessing that truly is.  It has been by the grace of God and amazing that Ella had almost 4 completely healthy years.

Back to Thursday.  Unfortunately, the iv starts just never go well and always consist of us holding her down while she's yelling things that just break your heart in a million pieces.  It's in those moments I would lay down my life to take all this away from her!  So when the first iv gets in and then blows… and then the second attempt gets in and then blows again…. you can only imagine the tears of defeat that roll down everyone's faces.  They ended up calling the vac team- a team of people that ONLY come to start an iv and use an ultrasound machine for help.  While we sat there for over an hour waiting for them to come, we continued praying.  God definitely sent an angel and she started the iv in a matter of seconds.  Finally, after not eating or drinking since 6:00am, at around 2:00pm they took her back.  Clif and I were able to be back there with her until she actually fell asleep.  I will have to say it was the strangest thing I've seen.  (Yes, she did have a biopsy back in December but there was so much going on and Ella was so ill that we ended up having to leave her back there before she fell asleep.)  Watching her play and talk and laugh and then all of a sudden fall over with her eyes closed was very scary!  We walked out and waited for over 30 minutes and then the doctor came out and said everything went well and she was sleeping.  She actually slept for 2 and a half hours after the procedure, which I guess was a good thing because they want her to lay flat for as long as possible afterward.  As soon as she woke up, she was ready to eat, talk and play.  What a blessing again for her to be in such great spirits; however, she was going to be on bed rest for 24 hours.  It's not the easiest thing to keep a four year old in bed when they otherwise feel fine.  But we made it and she did great.

We were told we would have preliminary results back within 24 hours.  Thursday night wasn't the best night of sleep and Friday we were sitting on pins and needles, hearts racing.  We waited, and waited and waited and waited and waited.  I thought it would be sometime before noon that we would find out… at 12:15 our nurse called the doctor to get an update and she said she was about to go see it and come tell us "soon."  We waited, and waited and waited and yes, waited.  Finally, at about 4:15 we see Dr Kale coming in our room.  Clif and I both jumped up with eager anticipation ready to hear the results.  Dr Kale first checked Ella as Clif and I were looking at each other with eye brows raised!  She told us to sit down… I was all of a sudden nervous because that's what she told us before she delivered the news in December!  First thing she said was "good news is…" There was NO additional scarring that has happened since December.  And then she went on to explain that Ella's glomeruli is still about 65% chronically scarred but her tubules look okay.  The reason she is loosing so much protein and blood in her urine is because it is just leaking through the scarred parts.  Then, she told us the best news… NO ACTIVE INFLAMMATION!  What a relief, what a blessing, what an answer to prayer, what a way for God to show is mercy, power, sovereignty.  Clif and I smiled, high-fived and hugged.  Clif then asked if that meant she was in remission and Dr Kale said YES!

What now?  Well, now Ella moves from the "induction" phase to the "maintenance" phase.  This will include to continue weekly Solumedrol infusions, daily medication and starting a new daily medication.  Ella's now on the road to slowly but surely wean off all of these.  I'm not sure how long that will take and she will continue to see all doctors on a monthly basis.  What we don't want to talk about is that this is remission so it could come back… and that her kidneys have been so damaged that she will need a transplant at some time.  But worrying will get us nowhere and will only take away from the joy we have today!  The enemy comes to steal, kill and destroy!  Ella has come too far to allow that and Clif, Alyssa and I have come too far to allow that!

Cheers to remission!

Here's the plan...

It's been a long three weeks and LOTS has happened in our household.  We started with my birthday, we've had Mother's Day, Alyssa's birthday and Clif's grad school graduation all along with Ella's weekly infusions and doctor appointments!!!  We've been blessed with visitors from our family and friends and lots of fun activities.  This has been great since Ella had to do another 4 week treatment of Solumedrol infusions.  So… here's the update:

At the end of the 4th treatment last week, we did a 24 hour urine collection.  Ella had started a new medication at the end of February and they wanted her to be on that for at least 8 weeks before checking the urine levels again.  Unfortunately, we got word this morning that the protein levels have actually increased rather than decreased.  So, after the last 8 hours of being on and off the phone with doctors, we've got two separate roads.  They both begin with another kidney biopsy… that will be scheduled for either June 6th or June 7th at Texas Children's and will require a hospital stay for 1-2 nights.  After the results are back then the roads diverge.  The first one, if the biopsy shows there is still active inflammation in the kidneys then Ella will have to go back to chemo cytoxan treatments.  The other one, there is a possibility the biopsy shows that the protein is a result of by-product just getting through because of the scar tissue already there.  In this case, she would NOT have to go back to cytoxan, rather she would begin another brand new medication.  They told us in December that 65% of her kidneys were chronically damaged so we know there is quiet a bit of scar tissue.  We also know she had a lot of inflammation so there is a chance that is still there as well.  Basically, it's about a 50/50 chance either way.  Best case scenario (in our minds) is that it is the second option and protein is just coming through the scarred areas.  Either way, the doctors will now bring in an oncologist in order to watch out for her bone marrow.  The reason they took her off chemo to begin with was because it was beginning to damage her white cells and bone marrow.  If she has to go back to it then she will need pretty strict monitoring.  Also, the alternative medication for the second choice has a possibility to damage her bone marrow as well.  So, we will welcome the 5th specialty doctor to Ella's team!

I know this is so much information and since I did not go to medical school I'm sure I am not explaining it very well.  I have to ask 500 questions, grill Clif and then grill Clif some more before I feel like I understand it!  So, first things first, we will get a call tomorrow or Tuesday confirming the biopsy date.  The AMAZING thing is that between now and then there are NO infusions, meaning NO needles and NO pokes!  She will have two weeks of not being poked and prodded on, celebration!  This will be the first time in months that she will go two weeks without being poked on!!!

Between now and then, please join us in praying for:

• Biopsy to go smoothly
• Clear and concise results
• Wisdom for the doctors
• Ella to remain infection free

Until then, here are a few pictures from Alyssa's 3rd birthday… Clif, Ella and I took her to the zoo!

Pressing On

Today is the 1st day of May and also the first day of many doctor appts and infusion center visits this month.  We learned at Ella's last check-up the blood and protein levels in her urine are still elevated.  It's high enough for the need to continue with another 4 week treatment of Solumedrol infusions once a week.  This is the third time in 2013 she's having to do this.  (Actually, out of the 18 weeks we've had in 2013 she's received infusions during 13 of them)  At the end of the four weeks they will do another urinalysis to check the levels.  If they are still high then another kidney biopsy will be required… and probably back to chemo cytoxan.  But I'm not going to get too far ahead of myself… So, on Thursday, April 25th Ella received the first of the four Solumedrol infusions and also an IVIG infusion.  (She will continue to get IVIG for 6-8 months)  Those make for very long, 8-hour days at the hospital.  Fortunately, Ella doesn't seem too affected by the infusions other than not liking when the IV gets put in!

Unfortunately, Ella picked up a cough over the last week.  I took her to the pediatrician today to get it checked on and she has an ear infection and tested positive for strep throat!  She already started penicillin, which is the only antibiotic safe for her at this time.  She has not spiked a fever and has continued being her happy, cheerful self.  We just need to watch her closely because of the fear that an infection could cause the P-ANCA antibodies to come back.  Also, because of her compromised immune system there might be a need for IV antibiotics as well.  Within the first 12 months of being diagnosed with an autoimmune disorder such as vasculitis there is an 80% chance the antibodies will come back.  (if not monitored well!)  (which we are doing!!)  :)  We will continue to be hopeful and "press on" toward the goal of Ella being in remission!

What's next… tomorrow morning Ella will receive a Solumedrol infusion at 9:00am.  I am not sure if they will draw blood to run numbers or not, sometimes they do and sometimes they don't.  My goal is to try and keep the blog updated on a weekly basis.  There is a lot going on this month and we appreciate prayers for pleads of healing.  I do not want to discount the blessings we have received along the way though.  Ella continues to be joyful, energetic, happy and loving.  She's full of life!  She is growing as a person and we've been told she is the most compliant 4 year old patient they've ever seen.  And Alyssa is the most supportive sister ever.  She protects Ella, takes up for Ella and sometimes even wrestles with Ella.  Their relationship is amazing to watch and I know the Lord put their two personalities together for a purpose.  They are just beginning to learn what it means to follow Christ and I know they are going to do amazing things for the kingdom!  I remind myself everyday that God is in control and not me.  We receive incredible encouragement from family and friends and I know I say it often but it's true… we couldn't do this without you!

"Saturday"

My good friend Shannon McCrory posted a blog that I have thought about a million times since I read it.  I hope she doesn't mind me posting it here, but she brought up a great point that I've never thought about before-

"This weekend, the church body meditates on the death and resurrection of Jesus. It makes sense that Friday and Sunday are emphasized. But the longer I follow Jesus, the more dear Saturday is to me. I think about how His followers must have felt on that long Sabbath day. Clinging to hope, but of what? They knew what He had told them, and they knew He spoke Truth. But on Saturday they had to live entirely on faith. There was nothing rational they could hold onto. Their rabbi was dead.

I have lived through many Saturdays-sometimes ones that lasted for years. I know what God has told me. I know Truth. But on Saturday, nothing makes sense. I can hope that Sunday is coming, but I don’t get to know when it will arrive.

When I am in a long Saturday season, I grasp hard to the Truth I know. I read Scripture more urgently than ever. I look back on the hard times God has brought me through in the past, and I seek peace in His promise that He will carry me through this as well. The dark of Saturday makes the light of Sunday that much brighter."

That literally sums up how I've felt over the passed few months.  Almost everyday has felt like "Saturday."  I can barely focus or concentrate on things outside of my house.  I'm trying to keep everything on track while feeling like my "train" is just flying downhill.  My emotions have been up and down so fast based on one tiny phone call.  One day the call says everything is great and all Ella's numbers from blood work are normal.  Then, like a light switch, we get a call and everything feels like we're in crisis mode.

The passed three weeks Ella has been receiving weekly Solumedrol infusions.  Last Friday she received the Solumedrol and an IVIG.  She is so compliant and content during the infusion, even though it is still a battle to get the IV started.  This Friday will be her last of the four weeks of weekly Solumedrol infusions.  She got these once a week in January, then moved to every other week in February, then went three weeks… that's when all her counts began trending the wrong way and therefore sparked the need for weekly infusions again.

It's so hard because if you could just see Ella she is always grinning from ear-to-ear.  She is more playful than ever and overall seems happy.  We are completely blessed by this and I know it has everything to do with the Lord answering prayers.  On the other hand, it's a little difficult to tell her she can't go to school and can't do some of the same things all her other friends can do.  All the medications she's on lowers her immunity and makes her more prone to infections- something she definitely doesn't need.

So, coming up for Ella- 

This week we are waiting for a phone call with results from last Friday's labs.  We are also waiting for her blood pressure monitor to arrive.  This Friday she has an infusion at 2:00pm.  Next Monday she has a check-up with her pulmonologist.  And in three weeks she has a check-up with both her nephrologist and rheumatologist.  

Please continue to pray for her joyful spirit to remain… and of course please pray for continued healing.

Keeping up with Ella

Ella is 4 years old now!  And she'll make sure everyone knows that.  Everything she says starts with "I'm four years old now…"  It's a great reminder that at the end of the day Ella is just a normal, happy, confident four year old.

Let me start off by saying that I am by no means "a blogger."  I can't promise I will keep updating this with every single piece of information… but I can promise I will update at some point.  The amount of encouragement and prayers we've been given has meant the world to us.  It is amazing to see the generosity and kindness that has continued to be shown toward Ella.  She is joyful.  She is content.  She is fearless.  She is my hero.  Everyday seems to bring more information, more appts, more thoughts, more emotions, more everything.

Ella has now received six treatments of plasmapheresis, two rounds of chemo rituximab, three rounds of chemo cytoxan, more rounds of solumedrol than we can count, one round of IVIG and almost three months of daily oral steroids, blood pressure medication, iron supplements and several other medications as needed.  Not to mention all the x-rays, cts, ultrasounds, biopsy and on-going blood draws for labs.  When asked what her diagnosis is and I think- hmmm, do you want the long answer or the short answer.  Ella has been diagnosed with P-ANCA Vasculitis which has caused kidney and lung damage.  So, she has been diagnosed with Rapidly Progressive Glomerulonephritis in her kidneys.  Vasculitis is an autoimmune disease that is triggered by an infection and basically your body begins to attack itself.  What she has is very similar to Lupus and a lot of her treatments are the same treatments that Lupus patients receive.  This will be a life-long journey for Ella. Once she is in "remission" it could be triggered to come back at anytime.  Her kidneys have been 60% chronically damaged so a kidney transplant will be somewhere in Ella's future, time-frame unknown.  We are unsure at this point what the lung damage is; however, will be seeing the pulmonologist soon.

So, here's the update-

Dr de Guzman (rheumatologist) and Dr Kale (nephrologist) have decided that Ella will not receive anymore rounds of cytoxan at this point.  Her last treatment resulted in her white cell count dropping way too low and so therefore the risk does not outweigh the benefit anymore.  She will begin a new medication on March 15th that will take the place of cytoxan.  It should bring the same results with less toxicity to her body.  She has an appt next week with Dr de Guzman and also with Dr Vece (pulmonologist).  It will be her first time to see him.  She will start this new medication, continue with regular labs and monthly appts with all three doctors.  She will also continue with monthly infusions of IVIG for the next 6-8 months.

That's the long and short of it for right now.  Things seem to change on a weekly and/or daily basis.  What stays the same is Ella's sweet spirit.  She continues to be happy-go-lucky and worry-free!  Ella is teaching me what it truly means to be joyful.  Her innocent personality and brave smile is amazing.  Prayers are heard and answered.  The journey is underway and the Lord has incredible things for Ella.

Another piece of the puzzle

Whenever we receive any information from the doctor's office I immediately ask "Is this good news?" "Is this bad news?" "Is this a set back?" "Does it mean she is getting better?"  (The list goes on and on.)  After receiving a phone call from the nurse this morning she told me, "It's not good news or bad news, it's just another piece of the puzzle."

So, here it is, another piece of the puzzle.

Today is exactly one month since Ella came home from the hospital.  She has come so far in the last month and we are completely encouraged by her joyful spirit.  It's just a roller coaster of emotions.  One day we get information that we want to celebrate and feel like she's healed!  Then, the next day we get information that I feel like how can we ever go on?  But I have to remember God is still in control.  God has a good, perfect and pleasing plan for Ella and He cares for her even more than I do.  As I was praying this morning, I was reminded of this.  I was reminded of how much God loves all of us.  I was reminded of how easy it is to lose sight of that and how easy it is to hold on to my own control.  "Trust in the Lord with all your heart and lean not on your own understanding."  (Proverbs 3:5)  I have a completely new outlook on that verse.  I feel like it's easy to say that and think that when life is going along just fine and I don't "have" to completely trust the Lord in a situation.  But what happens when things aren't going the way I think they should?  What happens when I'm not seeing the answers to prayer that I want to see.  What happens, is that I truly do "Trust in the Lord with all my heart."  I quit making plans based on what I want and daily give my life over to the Lord.  I focus on the things I know to be truth.  I tell myself to remember that God has control over each moment.  "In all things God works for the good of those who love Him, who have been called according to His purpose."  (Romans 8:28)

And Ella...

Ella is happy, energetic and loving.  She is so compliant and well-behaved.  Her fun personality is really shining and we are having the best time playing all her favorite games.  She has been beyond blessed by friends and family.  The prayers, encouragement and support from our neighbors, friends, church members and family is more than we could ever imagine.  It is a reminder of just how good people are, how caring people are and how genuine people are. It is appreciated and cherished.

"I am confident of this one thing
That my eyes will be blessed
When they gaze upon your beauty
And my lips will be sweet
When they whisper words of Praise
And my heart will be dancing
When it knows that you are with me
And I will see your goodness
In the land of the living"

"Land of the Living"- Waterdeep

Words from a mother's heart...

I am supposed to be packing and finalizing plans.  In two days I (was) supposed to be on a plane headed for India to help encourage and serve girls, women and children.  But I’m not.  “The mind of man plans his way, But the LORD directs his steps.” Proverbs 16:9 (NASB)  The Lord asked me to say “yes” to go to India but did not ask me to actually go. 

The passed 5 weeks have been filled with a whirlwind of emotions.  Five weeks ago, to the day, I knew in my heart something was seriously wrong with Ella.  We were at Katy Mills purchasing last minute jackets for NYC when I told Clif I needed to call and make an appointment with Ella’s pediatrician before we left.  I just wanted the doctor to say everything was okay and we could still go to New York that Wednesday.  Instead, on Tuesday December 11th at 5:30pm she called and said we needed to go straight to Texas Children’s Hospital.  My heart sank.  And the roller coaster of poking and prodding, research and tests began.

We were very candid during our 20 days at the hospital and tried to keep everyone as up to date as possible.  The prayers, encouragement and support from our family and friends was more than we could have ever asked for.  During the first several days of us being there I cannot even begin to count the number of people that said they were praying for Ella.  And that their kids were praying for her too.  We received prayer cards from our church, along with many other churches across the state.  Ella felt those prayers and we felt those prayers everyday. 

Even though sometimes it may have seemed like the prayers were not being answered, they were.  Just not in the way we were asking for them to be answered.  There was one night I found myself singing a song in my head (not sure where it came from) but it was Garth Brooks’ song “Some of God’s greatest gifts are unanswered prayers.”  The moment I especially remember that being true is when I asked for immediate prayer that there would not be any bleeding in Ella’s lungs…. Clif and I were weeping and praying during the ct scan that God would have mercy on her body and her lungs would be healthy!  The sorrow that came over us the moment we found out the opposite was like no other feeling I had ever felt in my life.  However, God knew what He was doing.  The prayers of healing were going to be in effect if we would just trust in His ways.  "For My thoughts are not your thoughts, Nor are your ways My ways," declares the LORD.” Isaiah 55:8 (NASB)  The reason we didn’t want there to be bleeding in her lungs was so that she wouldn’t have to receive plasmaferesis.  (Many of our friends and family do not know just how rigorous and harsh plasmaferesis was on Ella’s body)  They would continue with just steroid treatments if only one organ was involved.  But, because there were two organs involved plasmaferesis was a must.  And yes, it definitely was a must in order for the anca to be removed from her blood.  We learned two weeks ago that it worked!

The diagnosis is still very confusing and difficult to explain.  The treatment is still ongoing and we're just taking it week by week.  I don't know where to begin when I try to answer the questions we all have.  There is still a long road ahead.  P-ANCA Vasculitis is a very rare autoimmune disorder with many more questions than answers.  She’s not even in “remission” yet but we already think about her experiencing a relapse.  And we have no idea how long she will be able to function on the 40% of kidney she is currently functioning on.  We do not know what the path will be for her.  But we do know the Lord will wrap her in His arms the whole way.  “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11 (NIV)

As for me… I am a truly blessed.  I am blessed the Lord is teaching me how to serve and glorify His kingdom through this experience.  I am blessed God is guiding me along this journey.  I am blessed to have an amazing Man of Christ leading our household.  And I am blessed to have the best support system through family and friends.  I will continue to say “Yes Lord, Yes Lord” when He asks me to follow Him.  I will continue to daily lift my eyes up.  I will continue to put Him first.  And because of all this I will continue to grow in my relationship with Jesus Christ, our savior.