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Archive for August, 2013

Routine

Last night, Thursday night, as I was able to return to Charis, Selah and Lydia to pray over them after they were well asleep.  The thought ran through my head, “Routine.”  It felt so good to be laying hands on them and praying for their future again.  It was as if I had stepped back into time just a few months earlier.  Of course I prayed for Abigail and Josiah but I was able to get my hands on the 3 younger ones.  It just seems to make prayers seem solidified.  Who knows why the word routine went through my mind.  The past 6 months have been anything but routine.  And the next 6 months have no routine to them.

Abigail and Josiah are settled into school in Iowa at BCLUW.  Josiah was talking with Scott on Monday and ended an explanation with, “That’s how we do it at BCLUW, Dad.”  I nearly fell off the bed laughing when Scott told me!!!  There is just something about Iowa pride in doing things well, with an excellence that supersedes expectation.  So many times at BCLUW we were the underdog but because of our excellence in doing things well we came from behind or with less and overcame.  God is so good.  He took care of Abigail and Josiah, He made a way in the desert when there wasn’t a way.  Who would have thought that they would be in school 20 hours from us.?  Who would have thought they would pray and seek God for their destiny?  Who would have thought that they would be secure in their decision that they embrace the opportunities before them?  Who would have thought?

I never saw this coming.  Even weeks before when my Dad suggested Scott and I consider this, it was unthinkable.  We would have our children back after 10 weeks and let them go after seeing them for a week?  My mind couldn’t wrap around it. Even when we were looking for housing in the Charleston area someone suggested that we leave the children with grandparents during our 2 months local to the hospital stay.  My response, without praying, acting solely on my mother’s heart, “My children will have been away from me for 10 weeks, we need to be together as a family as soon as they get back.”  Sometimes it is the very thing that comes out of your mouth that convict you.

I hadn’t prayed.  I didn’t know what God’s plans where.  I had convinced myself that the sooner we could be back to normal the better it would be for everyone.  Who was I kidding, my life has never been normal, but it has been full of God intervention.  A few weeks later, in an instant, my husband said, “We must talk with Abigail and Josiah.”  It is the plans of my awesome God who only does wondrous things (Ps. 72:18) to make a way in our mind to release Abigail and Josiah into His perfect plan.   This would be one of those times that the verse from Isaiah 55:8 & 9 rings true in my life, “For My thoughts are not your thoughts, Nor are your ways My ways,” says the LORD.  For the heavens are higher than the earth, so are My ways higher than yours ways, and My thoughts than your thoughts.”

What seemed impossible became possible through the secure love of God, my Father.  Just as I can trust Him walk with us through the fire for Lydia, I can trust Him to be with, guide, protect, and make this a year of great exploits for Abigail and Josiah.

Wednesday night I had to ‘walk in faith, not by sight,’ as we are instructed in 2 Corinthians 5:7.  Lydia was all night on the potty.  Being away from her for a week did not prepare me for what I saw with my eyes.  She had been eating but her body didn’t seem to be retaining anything.  She stood in the doorway, physically depleted.  Seeing her from a distance, her pajamas hung on her.  Earlier that day, I had seen her legs for the first time; skin hanging on her bones, no muscle mass, her skin was dry and peeling.  I didn’t want to see it.  But that night, as she stood in the doorway, I had to look at the weakened frame of my daughter.  I was moved to get out of bed and be with her.  I would like to say that I stayed awake the entire night with her but I couldn’t.  I remember waking Scott up twice when I heard her go to the bathroom.  And then morning finally came.

No there was no routine.  We had our first day of school but day 2 would have to wait. We left 10 minutes late trying to make it to the hospital in time for the potty.  Thankfully, traffic had thinned.  She slept in my arms totally exhausted as we waited for her blood work to return.  Sadly, it revealed that the virus she was just over a week prior was back again.  We would have to return to the hospital the next day to start treatment.  Thankfully there was good news.  The 30 day biopsy had returned from John’s Hopkins.  No traces of Leukemia and 98% detected as cord blood while 2% is Lydia’s cells.  They will check this again at 60 and 90 days.  It took us several tries to leave but the bathroom would call.  We finally made it to the car, Lydia totally wiped out.  I would like to say that I encouraged her to drink more fluids and get rest but…I am ashamed to say that I lectured her.  No excuses, I was wrong.  Even now can’t believe the “talk” I gave her.  You know, one of those talks that turns into the lecture you never intended to give.

Thankfully, it is a short trip back to the house in Mt. Pleasant and the Lord pulled heard in the bridle in my mouth.  I wasn’t angry just…bothered that it “looked” like she was giving up the fight, she wasn’t giving up the fight, she had no fight, she needed me to fight for her while she rested.  I can’t even believe myself.  Yes, I am human and I make mistakes.  I do error but when I error I let it hurt long enough that I remember so I never cause that hurt again.  So I confess to you my error, my sin of acting in judgement on my daughter when I should have just let her rest in the car and prayed.

Oddly enough I have been signing off on things with the second half of James 5:16.  But the entire verse is what I submit to you today, “Confess your sins to one another, and pray for one another, that you may be healed.  The effective, fervent prayer of a righteous man avails much.”  In my confession on my sin, I ask for prayer of healing for myself and my daughter for the prayers of the righteous avails much.

I know where the battle lies and it is not in my daughter, it is for my daughter and the destiny God has for her to fulfill.  Thankfully, I got a clue as God convicted me on the road home.  God grabbed ahold of the bridle in my mouth and I stopped.  I saw her eyes looking up at me, the one I was to encourage and protect, and her eyes, the hurt, the plea for help, the pure exhaustion and was compelled to stop.  Oh, thank you God, for making me stop.

I carried everything into the house and made of the extra bed in my room.  She had started to get a temp and needed to be in a quiet place.  After tucking her in, I too got in bed, I just couldn’t go anymore.  It had been a hard drive as the sole driver to and from Iowa.  Physically, I was not ready for the trip either way because of all the sleepless nights in the hospital.  The all night drives got the best of me and caught up to me at the wrong time, just hours after arriving back at our house in Mt. Pleasant I was so dizzy I couldn’t keep my feet under me.  Vertigo had set in and I couldn’t keep myself off the floor without aide.  I remember waking up seeing Lydia’s bed empty but was not coherent enough to stay awake.  The next thing I knew she was getting back into bed.  I slept for 6 hours.  Amazing enough I was able to get to sleep that night.

Lydia woke up a couple hours later just about the time to go to bed.  We stayed up and played a game with her and then off to bed.  Scott would be taking her in on Friday am to begin the antibiotic to fight the virus.  Thursday night was a sweet time of prayer over each of the children.  Lydia got up once in the middle of the night and I sat in the bathroom with her and snuggled in bed with her.  Every time she felt sick again I prayed and we stayed in bed.  It had to stop…and it did!  When Scott came to get her up to take her to her appointment we praised Jesus she did not have to get up again in the night.

Then the text came, “Admitting Lydia into the hospital, she has a temp of 100.2”.  No reason to fear the battle had already been won.  The doctors have to do what they have to do but we won before she even got admitted.  So thankful she is getting fluids and I am confident in my God healing her quickly so she can return home.  Can’t wait to be with her and wrap my arms around her tomorrow night as I release the security of God’s love that will empower her to overcome.  I will not fail my God again.  I will stand and fight for my daughter and the destiny Jesus died for her to live!

My life is anything but routine!  It is one day at a time keeping the fight for the life and destiny of each of the children God has given me.  The only thing must be routine in my life right now is keeping my focus on God.  May I never loose that routine no matter how hot the fire gets or how tired my body is.  Lord help me, for my spirit is willing but my body is so weak.  You alone can give me the strength to press on for the victory that lies ahead!

In His Wonderful Presence,

Veridee

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The Battle Within

Twice in one day!!!!  You know the battle I am talking about, the battle of knowing, “This is the right thing to do…but my feelings are wanting me to act on my own selfishness and tempting me to embrace my personal needs rather than the needs of all involved”.  This was the first battle I faced after leaving Abigail and Josiah at the BCLUW Middle School Monday.  A whole new level of trusting God to act on behalf of Abigail and Josiah as others will take the helm as their teachers for the next school year.  It was a hard decision to make.  Somewhere in the middle of week 7 and 8 of Abigail, Josiah, Selah and Charis being gone to stay with my parents in Iowa during Lydia’s toughest days of fighting for her life, through chemo, radiation and more chemo, having nothing to eat for weeks, and restricted to her room, my parents called, “Veridee, you may want to consider sending Abigail and Josiah to school up here this year.”  Pause, pause, pause…as if I wasn’t facing enough and wasn’t missing them incredibly, trying to keep my focus on pressing in for Lydia’s complete healing and the security of each of our children, I have to think of only seeing 2 of them for a week and then letting them go for a year!!!!  It was a short conversation.  They had already done so much and I just wasn’t sure they knew what they were offering, “I will have to talk to Scott about this.  I don’t think he will go for it.”  They continued to compliment me on how well I have schooled them but didn’t see how it would be possible not knowing the number of appointments Lydia would have and her recovery rate.  She would be closely monitored for at least the next year, two all day appointments every week.  Therefore, home schooling would have to be done on Saturday and Sunday with 4 children in different grades.

I realize Moms never get a day off but this seemed insane.  When would anything, I mean ANYTHING else get done?!  From the word, “GO!” we would be behind.  A little overwhelming, but honestly, I couldn’t think of it at the time of the offer.  Lydia was needing all of my attention and what I had to spare was going to God to get the strength I needed.  When I don’t have enough for me, I don’t have enough for Lydia.

After much prayer it was time to lay the option before Abigail and Josiah.  We had to go down to Florida to talk with them face to face.  As my parents had instructed they would have to “want to” go to Iowa, they could not be forced.  We couldn’t hide from what God was telling us to do.  We had to lay the plan before Abigail and Josiah and let them have some time to seek God’s direction for their life.  This was a decision they were going to need to know God was leading them or it could get rough either way.  Worst case would be that if the children stayed with us we would have to take two years to finish their current grade and they would not be able to be involved in any extra curricular activities but on the other hand they would be 19 hours away.  They would keep up with school and have extra curricular activities but we could not guarantee we would be back for their birthdays, didn’t know if we would make a game to see them play and cheer them on, wouldn’t be their to assist in schooling or encourage them on their rough days.   When we laid out the plan in Florida because if they chose to go to Iowa the ‘ever allusive plan’ would be to meet my parents the following weekend to in St. Louis, MO so I could get back ASAP. This didn’t give them much time to seek the Lord.  The next day Abigail told everyone, my parents, her aunts and uncles, and cousins that she was going to Iowa for school and Josiah was the one set on staying in SC.  This was a surprise to all of us. However, we thought he might change his mind once he had some time with Lydia and considered his options.

My parents wondered why I was bringing Josiah to Iowa since he was set on staying in SC.  I told them, “I am planting and praying for rain to follow.”  He had a physical along with Abigail, she tried on her clothes at home and so did he, she packed her favorite things to take and so did he.  However, the day we left he was still telling everyone he would see them in a week.  After he told that last person, we headed to our house so I could pack all their stuff and then pack the van.  I told Josiah, “Son, this is a big decision, probably the biggest decision you will make in your childhood years, but I need you to understand that you have to do what God says is best for you.  Lydia is not out of the hospital.  She is not getting better in record time.  Even though she was never in the hospital for anything other than an appointment before transplant, I can’t guarantee that on this side of transplant.  God told us we would walk through the fire but He hasn’t told us when we would be walking out of it.  The only thing I know is that He will be calling us out of the fire and Lydia will be completely healed.  If there should be any trouble with Lydia’s health, school will come to a halt as we stay with her in the hospital.  We already are going to have school every Saturday and Sunday until the doctors release us to move back to Orangeburg and there is the possibility that you could lose a year of schooling.  This is definitely not because you are a slow student or behind but we can’t get the 180 days needed to complete the school year.  Your life doesn’t have to be on hold just because of what Lydia is going through.  The decision you make will be permanent.  As much as Lydia loves you, she does not want you to get behind or be left out because we can’t be involved in home schooling events and extra curricular activities this year.  She loves you. Yes, she wants you around but not at the cost of you getting behind or missing out.”

The drive from SC to Iowa was long, long, long.  I ams still not recovered in sleep.  But couldn’t pass up the opportunity to take Abigail, Josiah and Selah to the Iowa State Fair.  I’m sitting all day one day and walking all day the next.  And thankful to do them both!  We needed to go.  I wanted the children to remember that we aren’t dropping them off for any other reason than this being the best for them for this year.  Setting aside time specifically for them is well worth my investment and what a place to make some memories!

Then the horrendous shopping for the school supplies requested by the teachers.  I got one word for that, “Ugh!”  I am sure it didn’t help that I did it the day before classes started!  Stress level out the roof, increasing ever so slightly for the past two weeks.  Not knowing the final outcome but trusting that whatever it would be, would be God.  Just like we were having to trust God to work through the doctors on Lydia’s behalf.  They had been pushing all week to try and get us to get excited that she may be out of the hospital later in the week, then maybe by Saturday and they finally said she could get out of Sunday BUT they still didn’t have her med levels in her body right!  Another, “Ugh!”  I told Scott, “You can’t let them send her home until they get that right.  I can’t imagine the devastation of being discharged and returning the next day!!!   They can wait until Monday to make sure they have this right.  Besides, she would have to go to the clinic anyway on Monday so why not have them do the stuff in the hospital on Monday.  She would be released earlier on Monday if she stayed in the hospital than if you take her into the clinic for her appointment.”

Monday morning was EARLY for this home school Mom!  We don’t get out of bed until 8:30 am and now we had to be at school to sign the papers for Josiah to go to school before 8!  As I signed, Abigail and Josiah were ready to get to class.  Josiah was not trilled about being late to his first class.  He had to take a seat in the front.  Abigail was excitedly flustered.  It was cute to watch. She walked into her home room class and immediately had a friend from summer invite her over to the group.  After having an old classmate of mine walk us to their first class, I went back to the principal’s office to get more information.  I decided to stay around a while, well I probably over did it because I stayed for 3 classes.   I was not in class with them but wanted to watch from a distance between classes.  I found for the first 2 classes I had lots of questions and was getting them all answered so I could fill my parents in when I got home.  Abigail called me over to help her with her locker combination and Josiah was bashfully cute when I asked the teacher if I could take a picture of him before class started.  Josiah wouldn’t look up.  He was so red!!!  <chuckle>  I guess that was a little much.  He did peek up and give me a smile.  Later that night, Abigail said, “Mom, thanks for hanging around.  I am so glad you were there.”  So even though it was 3 periods, it was exactly what my children needed to make them feel comfortable.

As I waited through the 3 period I received a text from Scott.  Lydia counts came up again on their own, the doctors finally have the meds stabilized with what is going on right now in her body, and she would be discharged this afternoon!!!  The excitement overflowed as the principal came around the corner I had to share with him.  But as I sat waiting for the next bell my heart began to rip.  All this time, all the waiting, all the planning of her discharge celebration and I would not be there when she got out.  Absolutely, I will do something when I get home but…I wasn’t there on one of the biggest days of her life so far.  The battle had been hard, I mean really hard and I knew the end was coming, there would be a day when she would be discharged and we would move on to the next phase of the miracle of healing but I wasn’t there.  Maybe that is the real reason I left after the next period.

I pulled out of the parking lot and wanted to visit with a friend but there was no reception on my phone.  I just wasn’t ready to go home.  I could feel my emotions kicking into high gear.  In this situation, I am so thankful for the fruit of self control that the Holy Spirit gives us.  And I needed not just a bite but the whole thing.  Many of these Moms would be saying good bye for the day and seeing their children that night, however, in just a couple of days I would be saying good bye and not knowing when I would see them in the next year.  As a former cheerleader I have always been the one who cheered them on in their activities and spoke words of encouragement when they were having trouble.  But this time, they would be the child whose parents weren’t in the stands; watching, waiting, anticipating the opportunity to cheer them on.  Sure, I hope to make it back for their birthdays, it is the Hand’s Christmas this year, but all depends on Lydia’s recovery.  God said we were going through and would come out, unscathed and promoted but He never said how long, how hard, or how it would affect our family nucleus.  Our core is that we trust God in all things and call on His strength to make us victors.  WE, each one of us, Abigail, Josiah, Lydia, Selah, Charis, Scott and myself, will have the opportunity to put this into action and make it reality this year.

Before I made it out of town, tears began to well up in my eyes flowing like a flood.  After drying my eyes I knew there would be no way to hide the redness from Selah.  She would want to know what was wrong.  So I prayed, “God, the children look to me, when I am secure in Your plan, they are secure in Your plan.  I need You to comfort my heart.  I know all will be well.  I know Lydia is healed.  I know Abigail and Josiah will do well in school and with my parents.  I know You knew this was coming and I know You have the strength I need, we need, to stand unshakeable in Your plan.”

Do you remember the song, “I Surrender all” ? I would like to say that helped but I never thought when I sang that song that it meant more than deciding to receive Jesus as my Lord and Savior.  None-the-less, I had to surrender my children, Abigail and Josiah into the well capable hands of my parents and excellent schooling of the BCLUW teachers and staff just like I had to surrender Lydia into the hands of the doctors and nurses.  God will direct their teachers and my parents as well as the doctors and the nurses.  I am so glad I can trust HIM!

So the battle within, twice over, was finished by the time I drove 17 miles home.  God had won as I wrapped myself in His arms of love knowing I could trust Him.  He will make a way for me to support and encourage Abigail and Josiah and I am planning a super huge celebration with Lydia when I return.  She already has the menu picked out for me to prepare!!!  I figure if children can celebrate birthdays for a week then we can celebrate Lydia’s discharge for a week!  We just might celebrate it weekly!!! 🙂

The battle within is sure to come again but I am so glad my emotions yielded to the Spirit of God within.  There is no better comfort than what God has to offer.  And I found out that Josiah has a football scrimmage this Saturday so I am going to stay and watch him play 3 games!!! Wahoo!  My God loves me, this I know. :0  Veridee

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Back Together AGAIN :0

‘Tough times never last, tough people do,’ an encouragement from my Dad this week. The saying astounds me in so many ways because it applies in every situation right now.  It is just as applicable to me as it is to them as well.  I can’t imagine how tough this Summer has been.  You think, “Of course, they had a great Summer, they had their grandchildren.”  Yes, they did…for 10 weeks…without a break.  They couldn’t just sugar them up and send them back to their parents, as I hear Grandparents joke about now-a-days, as if they enjoy torturing their kids.  This was real and what they did was incredible.

This past week brought heartbreak and an overflowing heartache as I left Lydia in the hospital to spend a couple of days with Abigail, Josiah, Selah, and Charis in Florida with my family.   They needed to know they mattered to Mommy and Daddy.   We needed that time with them to reconnect and assure them all is well even in the midst of the difficulties.  Scott was 2 hours later than planned and in my excitement it took all the self control I had to keep the car going near the speed limit as we enter Georgia and then on to Florida.

My niece called when we were about 40 minutes away to ask if we wanted them to wait before going out on to the beach to look for turtles.  “Yes, we would like to go…” and I am so glad we did.  Charis was already in bed when we arrived but Selah talked…and talked…and talked…all the way up the coast.  If someone else started talking she would tug on my hand and say, “Mommy.  I have something to tell you.”  Then we would resume walking and talking.  Oh the joy my little 5 year old can bring my heart!  She talked as fast as she walked.  When we turned around we were way ahead of everyone else.  I don’t think she was interested at all in finding a turtle but she was interested in being with Mommy.

To get my arms around Abigail united us instantly.  Selah needed Mommy to snuggle with her as she drifted off to sleep in record time which left time to Abigail and I to talk.  What a delight to have her share her life with me.  And the way Josiah looks up into my eyes to assure me everything is all right followed by a kiss melts my heart just like it will one day be for one blessed bride.  That is so far off but yet so close at hand.  I will enjoy the look and the kiss that is for me now.

The next morning I rushed to my parents condo to get my hands on Charis.  2 months is too long to be away from a now 20 month old.  So much can be missed in 10 weeks!  I was sure GrandDad had secured her love so I tried not to get my hopes up.  I dreamed of her running into my arms when she saw me and swinging her around with a delightful laugh and grin from ear to ear.  I knocked on their door, crotched down so I would be at her level when the door opened and took a deep breath.  How would she respond?  Would she be glad?  Would she remember me?  Would she want to come to me?  I could hear her feet pitter patter to the door.  My Dad opened the door and Charis stood.  Her smile faded, she stopped in her tracks, and just starred.  And I knew I would have to take it slow.  I picked her put and held her close knowing that I couldn’t take her from my parents room.  So I entered and we walked to look at the ocean out their balcony.  My sister-in-law had told me how she could say, “O-cean” and loved to be on the beach.  As we walked to the balcony Charis’ bottom lip stuck out, her eyes got big and tears were about to roll.  Who knows what was going on in her mind, but I wasn’t going to give up so easily, I held her and took her out on the balcony to make the connection that had been lost over the last 10 weeks.  It seemed like time stopped as I held her close and nestled her.  It was going to take more than a hug to bring security to our relationship.

Wednesday was a delightful day with all my family and children but before sleep would come again my nieces, Chandler and Brittany, traveled back to Charleston to be with Lydia for her bone marrow biopsy.  This has to be tested on day 30, 60, and 90 after transplant.  Day 30 had come.  I told Lydia I would be back for the procedure.  Scott’s aunt was staying with her but either Scott or I had been with her for the previous procedures and I wanted her to know I would be there.  We arrived at 7:15 am so we stopped for breakfast.  I knew Lydia would not be up yet.  The procedure wasn’t until 9 am.  God is so very good.  I am so glad HE guides our steps.  I know it seems crazy…either go and be with the other children or stay with Lydia but that is not what HE was telling me.  Lydia came out of the procedure in the worst pain she had ever been in.  I can’t imagine not being their for her, with her.  We had agreed to stay until she was settled back into her room but my nieces chose to spend more time with Lydia.  We left by 3pm and Lydia didn’t cry, whine, or throw a fit.  I walked away thinking how I unbelievable the presence of God must be in her, with her.  She gave hugs, smiles, waved, and said goodbye as the door shut behind us.  Unbelievable…only God could give her that kind of security.  His love is that good.  Six hours later, we are back with the family.

Thursday was an incredible day spent with each child on the beach, in the pool and in the company of my wonderful family.  I remember months ago, one of the messages I got shortly after the diagnosis, “Even though I don’t know Lydia, I know the Lees.  You will stand together and kick this.”  My parents have been phenomenal.  We have 5 children but we got them one at a time and then kept adding, they got 4 of them all at one time.  so much for my Dad being retired this Summer!  With the help of Brittany and Courtney the children had a spectacular Summer beginning with The Black Dirty Days in Conrad where my parents where the Grand Marshals to ending with the Lee Family Vacation in Daytona Beach, FL.  My Mom made sure their “dance card” was full all summer long.  And people say small town in boring…they don’t know the small town I grew up in.  It is only boring to those who choose to live a boring life but to those who choose to make the most of every opportunity it is extraordinary living.  Doesn’t matter where you live, that is true.  Secretly I wish we could have one more event at the Iowa State Fair.  That Iowa beef would keep her Red Blood Cells up for sure! 🙂

How my parents laid aside their plans for the Summer and offered to keep 4 of my children is amazing.  All I had to do was get them  third of the way and they took care of the rest.  I hope to one day be as selfless as they have been.  They demonstrated once again the love of Christ.  It is not easy to have your plans totally be on hold for 10 weeks and to serve sacrificially 4 children day and night.  It is hard enough being the parent running my children everywhere for all the things they are involved in.  But when you haven’t been doing it for a while it can be quite the challenge of putting their needs above your own desires.  And sometimes you just get tired but my parents poured and poured and poured an amazing amount of love on my children.  Only the love of Jesus pouring through them could bring such security to my children during this time.   I already knew my parents were amazing but this reaffirms their selfless acts of love displayed abundantly.  The encouragement of my family is unmatched and daily gives me strength to stand, believing God’s best for Lydia, for each one, Abigail, Josiah, Selah, and Charis.  My Mom would call or email a verse or encouraging word every day.  The display of godliness in my parents is evident in all they have done for us and aligns with the quote, “Actions speaks louder than words.”  There is no room for doubt because their love is so evident in their sacrificial love for us.  Truly we have been loved with the deepest form of love that God displays, agape.

As if they hadn’t done enough, they added a few extra hours onto their trip to stop by Charleston to visit Lydia.  It was a great day!  Doug had to leave early for an appointment back in Michigan so they stopped in for a few hours Friday night and then my parents arrived on Saturday.  Just as they were leaving the children and I were on our way after unloading the car at our temporary house in the Charleston area.  It was a non-stop party.  Selah drew picture after picture in the car for Lydia.  As we walked through the halls to get to Lydia the children were in practically a run, hopping and skipping along the way.  I didn’t have to tell them one time, “Let’s keep going.”  Selah was beside here self, she was like a can of pop that had been shook up just ready to burst.

Reuniting the children was…words just don’t describe.  Lydia nearly squealed as she embraced each one and then back again as the chatter began.  It was a delightful overflow of love spilling on each one, from one to another.  Scott and I stood back and watched with delight, speechless.  The next night when I turn to give Josiah hugs before they leave, Josiah is holding Lydia in his arms on the couch.  Her head is on his chest with his chin on her head and I had a flashback to when she was born.  Josiah was 3.  When Lydia cried he would insist on rocking her in the big fluffy chair and he would sing, “You are my sunshine, my only sunshine…”.  He has always been our tender warrior.  Don’t say anything about his family or you will see the warrior come alive and if anything is wrong you will see the tender side spill out.  Abigail had been thoughtful all Summer preparing homemade gifts for Lydia.  She had a whole box full.  Each one loved the way they knew how.  On night 3, Lydia handed out the prepared gift bags full of the overflow of things she had been given or made for each one.  Family…the way we are taught to love for one another…is so important.

Lydia is getting blood this morning but she has gone 4 days without blood products.  Her platelets came up on their own yesterday for the first time.  We are told platelets are the last to ‘get to work’ and do their part.  ANC came up yesterday nearly 500 points.  It has been over a week since she has had a booster shot for ANC.  So very good!  Doctors are talking about possible being discharged later this week.  She threw up this morning after taking one of her pills but didn’t tonight when taking the same pill.  This is the med they have to get balanced in her system.  They will check her blood levels every Monday and Thursday for the first 2 months.  We have to stay within 30 minutes of the hospital during this time for any emergencies.  Too little of the med will cause Graft versus Host Disease too much can cause liver damage.  We do not need a Goldielocks’ experience.  We are looking for “just right” the first time.

The bone marrow biopsy results are scheduled to be back by Friday.  This will tell the percentage of bone marrow from the cord blood transplant and Lydia’s original.

God has been and continues to be so very good.  He is the rock we stand upon and He will not be shaken by this, therefore, we will stand secure in His love and mighty power over Leukemia!

Veridee

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After an amazing 3 days of counts over a thousand and the celebration cake decorated by Lydia Saturday night in preparation for our 3rd day celebration and announcement of discharge…the doctor came in and said we couldn’t go.

I was fit to be tied. No, I was tied.  There wasn’t a thing I could do. She went on to explain that they had started Lydia on a med that had to be watched closely and blood levels checked twice a day for no less than 2 weeks.  Evidently one of Lydia’s tests came back on Thursday saying that she was positive for another virus.  The med for this has major side affects one of them causing damage to her kidneys.  Sunday night she started peeing blood.  So if she gets over this virus and doesn’t get anything else the next possible date of discharge could be anywhere from August 14-16th.

So how did I feel…like I climbed to the top of the mountain keeping focused on making the mountain top in time to see the sunset from my seat on top of the world only to find out it was a plateau that needed to be crossed in order to continue to climb to the top of the mountain.  Not only that but the remaining mountain blocked the view of the gorgeous sunset to come.

All day I held onto a point from a message my Dad preached years ago, “You can’t let disappointment lead to discouragement or you will find yourself without hope.”

I battled all day to try and keep my head above water, finally while Lydia was in the bathtub I turn up the praise music on my computer as loud as it would go.  I didn’t care if the nurses could hear it or me.   The blow took me beyond disappointment and straight to discouragement.  I turned my face to the window and sang into the heavenlies.  Tears ran down my face and I choked through the first song.  Discouragement had set in and hope was about to be lost.  I had to get a grip on hope because without hope there is no faith.  There is not a thing I could do.  There is no goal.  There is nothing to plan for.  Anything can hit at any time.  We are locked into this until Lydia turns 30.  Literally anything could happen at any time.  The plan changes and you are not informed.  Her body has been put through so much and the viruses continue to come so the meds are increased to dangerous levels.  There is nothing in her body that is normal to her.

You can say what you want but honestly I don’t want to hear it.  I used to think that people who said, “You don’t know because you have not been where I have been,” were really acting a bit…well I don’t know that I named it but I knew that maybe I didn’t go through what they went through but Jesus went through it with them so they could turn to Him.  I can’t explain all the hardship that we have gone through and the new challenges every day.  You would be totally overwhelmed.  Jesus is the only one who can give us hope and so Scriptures is your best received response.

So all I can say is pray:

1. We wake up and embrace the new mercies God provides every morning.

2. Complete healing throughout Lydia’s body, no Graft verses Host Disease, no viruses, no fevers, no infections of any kind…NO SICKNESS or DISEASE.

3. For Lydia to eat.  It has now been a month since she has eaten anything to count.  A bite today may mean no bites for another couple of days.

Constantly positioning myself in my Father’s arms,

Veridee

 

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Day 1…2…3

So glad to have my computer back from the shop!  While we were in our “blackout” meaning unable to contact you, the bulk of our prayer force, the enemy was all around.  But MIGHTY is our God, He is our refuge and our strong tower and we ran into HIM.  He wrapped His arms around us and held us tight.  In the darkness of the days His love poured over us.  I have learned a long time ago that when fear is showing its ugly head I have to get in my DADDY’S lap.

1 John 4:18 There is no fear in love, but perfect love casts out fear because fear involves torment. But he who fears has not been made perfect in love.

The trick to alluding fear is being in God’s perfect love.   

As you know over a week ago, we were celebrating Lydia’s ANC getting up to 840 and the doctors were talking to us about releasing her by last Sunday.  The doctors moved a little too hasty in taking Lydia off of most of the IV meds and putting her on pills.   They couldn’t get the correct balance of meds by mouth.  The high dose of the main medication caused her counts to fluctuate and drop below 500, she began to have an allergic reaction as her face, ears and lips swelled, the next day a rash appeared at her neck and for the next three days it progressed over her head and chest as her temperature spiked.  This led to multiple tests, changing meds for the treatment of a virus and Graft Verses Host Disease. 

After a few days, the doctors came in all a fluster.  I had to share the obvious, “You realize you screwed up when you took her off all those IV meds at one time and wanted her to take them all at once on an empty stomach.  You should have known she hasn’t eaten anything worth recording in over 3 weeks.  I don’t who could hold down all those meds at one time even on a full stomach.  Would have thought you would have talked to her about having something on her stomach before  taking all those pills.  I can’t figure out why they were not spread out throughout the day until she started eating.  You were so amazed she could pop the pills that you didn’t realize there were other things to be concerned about.” The doctor was a little taken back at her obvious mistake and that this could be the reason for the drop in counts and the onset of Graft Verses Host Disease.  She was speechless until she blamed the reason for giving all the meds at one time being because most parents don’t want to mess with giving meds throughout the day. This is where they should have asked us first.  So they began working on a schedule to spread out the meds.  Then they were able to find out which meds were causing the problems.   ‘What a concept.’ The meds through IV come with liquid and take anywhere from 15 minutes to 4 hours to drip into her at different times throughout the day but since she could take pills easily they gave them to her all at one time.

The uncontrolled meds also caused her to need platelets almost every day.  The meds caused her to throw up  several times a day from last Friday until Thursday.  During the mix, the doctors wanted to cut Lydia’s skin to test it just to make sure it was what they thought it was…Graft Verse Hose Disease.  When the doctors came in to tell me I asked, “With all the tests that you do there isn’t one that will let you know if this rash is Graft Verses Host?”  They were just a little too eager to cut her.  Sure it would be a small cut and take only a stitch or two afterward but still their eagerness bothered me.  This is my child not a lab rat.  Thankfully the dermatologist said there was no need for that and verified that it was a small case of Graft Verses Host Disease.  So…STAND, WE HAVE…in the presence of our DADDY to receive His perfect love to stomp all over fear the doctors tried to impose.  

Ezekiel 3:33-36 ‘Thus says the Lord GOD: “On the day that I cleanse you from all your iniquities, I will also enable you to dwell in the cities, and the ruins shall be rebuilt.  “The desolate land shall be tilled instead of lying desolate in the sight of all who pass by.  “So they will say, ‘This land that was desolate has become like the garden of Eden; and the wasted, desolate, and ruined cities are now fortified and inhabited.’ “Then the nations which are left all around you shall know that I , the LORD, have rebuilt the ruined places and planted what was desolate.  I, the LORD, have spoken it, and I will do it.”

Prayed through this night and day, it is such a picture of anyone going through chemo, radiation, or bone marrow transplant.  The ruined places rebuilt by the hand of God, her body fortified and protect from sickness and disease, her bones inhabited by healthy blood cells that will cause her body to prosper like the garden of Eden.

Graft verses Host Disease is where either the body is rejecting the new cord blood or the cord blood is rejecting the body.  Thankfully, Lydia had a mild case, just enough that her body could do what it was created to do…Did you know that God created our bodies to learn a disease and get rid of it then when the disease comes around again our body has built a natural resistance to it and we do not get sick from it again.  Pretty cool!  God just amazes me.

So we prayed:

1. Learn the disease

2. Overcome it and kick it out, and

3. Build a resistance so it can’t come back again…EVER!

The doctor’s say that Graft Verses Host Disease can come even years down the road but our God has made a way out…Lydia had a small case and we pray her body has learned it well enough that it will resist it in the future.  

 

We are glad to say that the disease is gone, rash is gone, throwing up is gone, and temperature is normal.  REMEMBER over a week ago I asked, ‘Whose Ready to Party?’  In that blog I told you that Lydia had to have 3 days over a thousand to get discharged…

Day 1 Friday, August 2nd: ANC 1170

Day 2 Saturday, August 3rd: ANC 1600

Day 3 August 4th, TODAY, ANC 2900

Yesterday, Lydia asked for Mommy’s Frito Salad (a Texas thing) and a mint chocolate cake.  I ran to the store to get all the fixings for Frito Salad and I fixed the cake at home but brought it for her to frost and decorate.  Just the fact that she is asking for something to eat is a step in the right direction.  

Continue to join us in praying for Lydia’s body to stabilize so it

1. Holds on to her platelets and Hemoglobin.  

2. Releases the med given on Thursday that is causing blood in her pee.  The med has horrible side affects on kidneys. They have her scheduled to receive this med again this Thursday.  

Now that we have had 3 days over 1,000, there is hope that we will get discharged tomorrow.  Then it is appointments twice a week to check med levels in blood.

Thursday is also the day of Truth.  It is Day 30 from transplant and they do a bone marrow extraction to find out which cells are in the bone.  They should not be able to detect Lydia’s original cells but the new cells.

Thank you for praying during the “blackout”!  The prayers of the righteous avails much!

Veridee

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