.Cadi's Story.

She is so much like me when it comes to writing. I find her stories scattered around the house, so much like the stories I used to write as a little girl. She is filling up her first journal, and I admit I have taken a peek, and she is a deep thinker with an old soul. I love this about my Cadi. However, this particular story disturbed me so much, that I had to write about it in order to process it. Here is what she wrote:

Alice Gives

by Cadi

Alice! Mommy called. Time to go to church.

No. said Alice.

Now. said Mommy.

But Mommy, Janie makes fun of me.

Janie? said Mommy questioningly. I thought Janie was your best friend.

She is, but our family is black and her family is white. She doesn't like black people. So she makes fun of me.

Well, I will talk to Janie's parents when we go to church, okay Hon?

Okay. said Alice.

Wait. I have to get something. said Alice.

Janie always liked this doll of mine. Her name is Anna. I will give it to her at church.

Good for you. said Mommy. Good for you!

Such a short, simple story, but it broke my heart. Because, although the characters have been changed, I know my Cadi has experienced rejection from a girl "friend" because she has two black brothers. What bothers me so much is that, although we are all born as sinners, from all that I have experienced, understand, and researched, children are taught racism and prejudice, primarily by their parents. So this little girl, in 2013, is growing up in a Christian home, and whether through spoken teachings or simply actions, is being taught at the very least, that black people are inferior to white people.

And I am just wondering how we can reach the world with the gospel of Jesus when our children are being taught such lies?

We are all made in God's image. I have stated that so many times here, and it is something so close to my heart. When we look at people and see the image of Almighty God it should propel us to love. One thing, I think, we followers of Jesus, fail to recognize, is that we are all made in the image of God - made. That means we are born in the image of God - every single person shares some traits of our Heavenly Father. Every person.

yes, that homeless bum on the street,

yes, that prostitute selling her body on the corner,

yes, that disabled child confined to a wheelchair,

yes, our black president,

yes, the cashier at the grocery store,

yes, your child's teacher,

yes, the mailman,

yes, that man on death row.

They all bare the image of God! 

When we stop and look at people through that lens it should change everything. Our family has been told so many times that racism and prejudices no longer exist in our country. I can say through shaking lips and tear-filled eyes, that they absolutely do exist, and they exist right in our own churches. Perhaps it is not as overt as it once was, but that does not make it any less damaging, any less sinful, any less hurtful.

My eyes are being opened to things I would have rather stayed blind to. It is horrible to see this kind of hate from the world, let alone fellow followers of  Jesus, toward my beloved children/family. It hurts to see how the Church has perpetuated this lie, and how destructive it is.

A few months back we were talking with Habi in the van on the way home from somewhere. He was absolutely astonished to learn that Jesus is not white. We explained how he probably looked more middle Eastern - dark complexioned, dark hair - probably even similar coloring to our Jamesy. Habi was dumbstruck, as he had been fed the American lies, by American mission teams, that went to Africa and showcased a white Jesus. I nearly sobbed, as I realized all that little statement meant to him, and I literally watched his heart melt and his defenses crumble as this truth sunk in. And that very night, Habi surrendered and asked Jesus to be the leader of his life. But it was not until we erased that lie.

Something needs to break and change inside of us until it is not us versus them anymore, until it is just us collective - a broken, fallen people, yes, made in the image of God, who all need rescuing. Not one of us is better or more deserving than the other. I want to see a difference in my daughter's generation, but when things like her story creep up, I feel discouraged and so sad.

Thankful to serve a God who loves justice and will one day right all of this horrible, horrible wrong.

.She.

She asked for a tea party so innocently, urgently, and sweetly. How could I say no? Her brothers were napping. It was the perfect time for tea.

She said saucers were a must. I agreed.

She sipped the tea, pinky in the air. I asked her where she learned her tea manners. She replied from my American Girl books.

Of course. I smiled. The books are a constant in her hand. She devours them chapter by chapter over and over.

She giggled and chattered and radiated beauty and light from her eyes.

She is sunshine and girly-ness, a welcome complement to her rough and tumble brothers.

She speaks in a sing-songy voice, and as I sipped my sweet pomegranate tea I willed the moment to freeze for just a moment. I breathed her in and marveled in who she is and who she is becoming.

She is growing up so quickly.

May she never outgrow tea parties.

.So Thankful.

Sometimes my heart still catches when I look at her, and I think of all that God has brought her through this winter.

 

I am so thankful to see this beautiful, silly grin freely on her face again.

Praying her I.T.P. is truly in remission, and this is just a chapter in her past.

Today I am just so thankful.

.This Is Real {EDITED}.

{EDIT: Cadi's platelet count is at 40K!!! This is up from 25K last Tuesday. We continue to pray those platelets up. God is good and faithful, even though my flesh fails. Thank you so much for praying and holding our family up.}



This is real.

My flesh is screaming out this stinks.

My heart knows that this is for my own good (Romans 8:28), this is to draw me closer to God, and make me look more like Jesus, but honestly, at the expense of my daughter?! My heart knows that the reason for this happening to Cadi is to bring glory to His name (Romans 11:36). Why did He choose our family? It is humbling and maddening all in one. I have new compassion and empathy for parents with terminally and chronically ill children. While we have only experienced a minute amount of what comes with that with our Cadi, I understand a little bit more now.

My flesh is screaming out I don't want to understand.

Cadi  is with Jim right this moment getting her seventh blood draw in thirty days - we are a month into this I.T.P. diagnosis. Honestly, I was not too concerned when I first heard the diagnosis. I thought for sure Cadi would be an acute case, and that she would be back to normal in a week or two. Most of the time I can function like this is not happening, until I remember to check Cadi's gums and find bleeding, her body and find huge bruises, until I look into Cadi's eyes some moments and see just a tired shell of herself. I am pretty strong until my sister sits beside me and opens the wellspring of grief and fear that I have been trying to stuff down, and the sobs just come sure and strong. But most days I am okay in this.

I'm not sure if I am okay with this today.

 My stomach is churning, and I will pace my kitchen waiting for that phone call that will determine how this next week will go for us. Another wait and see on pins and needles, praying to God that she does not get hurt or sick? Or a week of rejoicing over platelets that are up? Or will this finally be the week where we have to go the awful steroid route?

I am pretty much all over the place.

Of course this morning when I want to mope around and feel sorry for us, I get hit over the head with this verse.

Psalm 73:26 My flesh and my heart may fail, but God is the strength of my heart and my portion forever.

So this morning instead of waiting for that call in my own strength, perhaps I will wait in God's strength, remembering that HE is my portion.

I will be back, friends, with her count. I am praying for at least 50k. Logically this is unrealistic, she has developed so many awful bruises this week, and has absolutely no color in her face - signs of dropping platelets.

But my Jesus, my Jesus is stronger than any logic.

.Our Roller Coaster.

I.T.P. is a roller coaster, I had been told. Now I am realizing just how tightly we are strapped to that roller coaster, without a distinct end in sight. I want to get off. I am not strong enough for this ride, but Christ in me is.

Today Cadi had blood work again. Her platelets are now at 25k. That is 5k higher than last week! We are rejoicing over every single platelet, even though her Hematologist considers anything short of a 10k change to be "no change". We are taking it as good news, and we will test again next week. The goal for a "normal" platelet level is between 150k and 450k.

I am researching a gluten intolerance and I.T.P., and I have found a ton of information on that. Several articles claim there is a link between the two, although few regular doctors will acknowledge it. We are currently discussing and praying over putting Cadi (and our whole family, as that is the only way I can see doing it) on a gluten free diet. I would much rather do that than have Cadi on massive doses of steroids.

Cadi has been having some tummy troubles and extreme fatigue. She also is experiencing leg pain. The hematologist was uncertain as to why she is still so, so tired. She told us that we need to be extra vigilant in keeping Cadi away from people and helping her to stay healthy right now. So we will try - this coming off of two days spent with my family celebrating Christmas. (We like to stretch this season out!)


Cadi with her cousin.

I am sorry for these medical posts. I am assuming if this becomes a permanent part of our life, than these posts will stop. But for now we are still hopeful that this is temporary, and we covet your prayer.

And for some comic relief, because I certainly need a bit these days - my Scotty and his cousin caught in the act of stealing candy from Grandma's candy dish!



Subscribe in a reader

I awoke feeling a little cynical, a little grumpy, and just not wanting to do this. I was feeling sorry for myself, my family, for Cadi. I wish that I did not know what ITP was, or how many platelets Cadi has. I was angry that we have to keep such careful watch over Cadi and how it is starting to make her nervous. I don't want to check her gums any longer, only to find them bleeding. I wish Cadi did not have a Hematologist, and that we did not have direct access to her via a phone number plastered to the fridge.

I wish that every fall, every bump, every bruise was not cause for major concern. If only I had never heard of petechia or knew what it meant. I hate that I have a notebook documenting this journey, and how many hours I have used surfing forums for help for Cadi. I hate the fear that strangles me, mocks me, and makes it so difficult to take my thoughts captive.



The thoughts all swirled in my head before I even got out from under my warm quilt this morning.

Then it hit me. Tiffany, the only reason that this has not ever been a part of your life until now is grace.

Any carefree, wonderful healthy days, years, moments that I have had with my family are grace - they are all undeserved. They are a gift. This trial, this small little hiccup, is merely pointing me back to His grace that blankets every part of my life.

Even this - all of this - the ugly parts that pierce my Mommy heart are grace. It could always be worse. God's grace and goodness are still here, still surrounding me, my family, my home. I just have to open my eyes a little wider.

I have been looking at the Bible to see what God says about trials, and I am learning that my faith can only be proven genuine when tested with trials and grief.

1 Peter 1:6 In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith — of greater worth than gold, which perishes even though refined by fire — may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.

The time that I need my faith to be most real, most genuine is when I am undergoing trials. Faith during trials leads to spiritual maturity.

James 1:2 Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

I am going to consider this joy, and see the grace God is giving me in allowing my faith to grow through this trial. That does not mean that this doesn't hurt, that I am not scared, that I do not cry or question. It simply means I cling to God, trust His plan, and open my eyes to His goodness - even here - even now.

.Today's Count.

Cadi platelets have dropped again. Last Tuesday she was at 27k, and today she is at 20k. That was not the news we were praying for, and honestly not at all what I was expecting. I am remembering that God is in control, that He is good, that He is loving, and that this is all part of His perfect plan. It doesn't make this easy, but easier.

We continue to wait and see. The Hematologist stated that her IVIG treatment was not effective. There is little else to do at this point. We have to continue to monitor her very carefully and really watch for membrane bleeding and bleeding in her urine/stools. If that happens then they will start her on oral steroids. Cadi's next blood draw is next Tuesday. I know that even an acute case can last for six months, but we were so hoping and praying for this to be over.

Trusting God.

Her spirits are up. She is such a joy, and I am not just saying that. She is teaching me so much. Cadi continues to be very, very tired. We are assuming that is still the mono, but despite it all her smiles and laughter continue to fill our home.



If you are new here, you can catch up on Cadi's story here.


Subscribe in a reader

.Finding my Rest (Update on Cadi).

As soon as she awoke yesterday I knew something wasn't right. Over the weekend Cadi had seemed a little better, still tired, but she seemed to have a little more energy. She had no signs or symptoms that her platelets were falling. I was very hopeful that she truly was going to be the exception for I.T.P., and that just one treatment kicked her body back into gear allowing her to make a full recovery.

However, sadly that does not seem to be the case. Which is normal for I.T.P. cases, but this is not another case, this is my Cadi.

I noticed late yesterday morning that petechia was spreading all over her chest, her belly, and her legs again. I panicked, now realizing that this is an indicator of dropping platelets. We called her Hematologist and were told to go straight to our local hospital for a blood draw. (She was supposed to wait and get one on Thursday.) Sure enough her platelets have dropped.

First I have to correct myself. I had previously said that Cadi's counts were at a 9 at the beginning of her diagnosis. That is what we were told by several different doctors. However, yesterday, I found out most doctors just don't say the THOUSAND that comes after it. So Cadi was actually at 9,000 - not 9 (a 9,000 is a critical count - anything 10,000 or under is.) Last Thursday she went up to 78,000 (which the nurse on the phone had told us the thousand that time). I apologize for the misinformation.

Yesterday Cadi was down to 27k. She is back into a dangerous zone with her platelets - not critical as the risk for hemorrhaging and internal bleeding is still not as great as before, thankfully. The Hematologist wants us to watch her for membrane bleeding, and if she does not have any then wait until next Tuesday to test her blood again.

I had been praying and praying that my Cadi was going to be the exception to this diagnosis, and that this would all be behind us by Christmas. Which is pretty unrealistic humanly speaking, but I knew for God it was possible. It just is not His plan. So we continue to be in the thick of this. Cadi continues to feel very fatigued from the mono, and her blood platelets are dropping.

My prayer is still that her body starts working properly on its own, and that we see a spike in her count next week. For now we continue to lay low. I am trying to do a little school with Cadi each day, but I am so thankful that Christmas break starts on Friday for her. I feel so sad that Cadi is not able to participate in the normal Christmas activities. We have resigned to the fact that she will not be singing her solo Christmas Eve at church (although we are going to record her singing it, and it will be played), and Cadi will not be able to attend church Christmas morning either. She has missed parties and get-togethers. But the one thing that cannot be taken away is the true meaning of Christmas - celebrating the birthday of Jesus. So we are going to focus on that, and not on everything that she is missing. We may not have Christmas cookies, and I may not have sent out my Christmas cards, no presents are wrapped and really very few were purchased (I have had sick children since Halloween!), but Jesus, well He is being lifted up and exalted and made much of. And that, that is Christmas.

My grandma remains in the hospital and needs serious prayer, and so does the entire family.

I am tired, I am weary, but I am not defeated. I know everything is filtered through the hand of my God. I know that all of this is His perfect plan, orchestrated lovingly by Him. So for now I find my rest in that knowledge, and that is enough.

This photo was taken a few days ago when Cadi was feeling a little better.

Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Matthew 11:28

.Count is In *with edit*.

78,000!!! From 9! Can you believe it??

Today was intense waiting around for Cadi's blood results. This morning my grandma was rushed to the ER with congestive heart failure. We just have a lot going on. But in the midst of it all, we have so very much to be thankful for!

I prayed for 10,000, and God went above and beyond!!

Now we are petitioning God to completely get rid of this blood disease and allow Cadi's body to work correctly again. Today her counts are supposed to be the highest possible after treatments. What is typical of I.T.P. is that her counts will now start dropping as the medication is leaving her body, and she will once again have a low count next Thursday. BUT we are praying that Cadi is the exception, and that her platelets are even higher next week. Would you pray in agreement with us?

Although, Cadi's count is up, she still has to be careful-especially with head or belly trauma. Remember a good count is between 150,000 and 450,000. But I feel much more relaxed right now. She is still sleepy from mono, but overall she is doing well.

Wow, what a week. All I know is that the body of Christ is phenomenal. The meals, phone calls, prayers, cards, care packages, emails, etc., etc. have just humbled our family. We are beyond blessed. God is so good to use His people to lift us up! Thank you for allowing him to work through you. Our family is so thankful for you all!

No photos for this post. My computer is completely on the fritz, and I am using Jim's iPad from work.

*My computer randomly worked long enough for me to upload this short little message from my Cadi-Bug.

Subscribe in a reader

.Tomorrow.

Tomorrow morning we go into the hospital, bright and early, to have Cadi's blood tested again. She is anxious. Her little arms are bruised and sore, and she seems to have inherited Mommy's "love" for needles. If you would, please pray for peace for her.


This morning - a little tummy ache but doing well.

I have been asking God to bring her platelet count up to 10,000. I also have been praying that her count would stay up, that her spleen would stop attacking her platelets, and that we can put this all behind us. A tall order, but I have a big, big God. Mostly I am praying for peace and acceptance in whatever cup God has for our family and our little Cadi. I want her whole and healthy and running around our home again. I want that so, so much. But above all I want to want whatever it is that God has planned out for us. I am not quite there, but it will come.


Grandma brought Cadi a "Prayer Blanket" to remind her of all of the people praying for her. (the photo is poor because she was in bright light and I did not want her to have to move, but it is so special to me.)

Cadi's spirit has been so sweet. Today it sunk in a bit about how much she is unable to do and what she is missing out on. However, she only has moments of sadness and pity, and then she moves on. Her attitude is humbling me. For such a little girl, she sure is teaching me a lot. Cadi spent all morning in her room. We tried to make it a special place - even moving a tv and dvd player in there. We have to keep her away from the boys until her count comes up more. They are a little too young to understand, and I would hate for them to carry the burden of hurting her. (Scotty is at my parents tonight through Friday. He is having a blast with all of the special one-on-one time with Grandpa and Grandma!) Cadi did a little school in between watching Charlie and Lola, putting a puzzle together, and snoozing. This afternoon Jim's mom came and did some painting projects with Cadi. She was so happy.



Tonight she was exhausted and looked it. She is developing a few more bruises that we are watching carefully, but no more nose bleeds or bleeding from her mouth. I pray this indicates good things.



Thank you for your encouragement and for lifting us up. It has been our life-line. Today the adrenaline has worn off from the last few days, and I have reached a pit of exhaustion. It was your prayers that carried me through this day. I could never thank you enough.


Isaiah 43:2 When you go through deep waters,I will be with you.When you go through rivers of difficulty,you will not drown.When you walk through the fire of oppression,you will not be burned up;the flames will not consume you.

.Cadi's Diagnosis.

God is good and has been so, so gracious to our family. We have a diagnosis. After over 12 hours in a children's hospital yesterday, we are home. This post is going to be medically detailed. I know hundreds of you were lifting up Cadi in prayer, and I want to give you the best explanation that I can. Cadi has Immune Thrombocytopenic Purpura (more commonly known as I.T.P.). She also has mono, but that is really secondary at this point.

I have a big pamphlet in front of me about Cadi's diagnosis, and I am using it to try to explain her disease to you. For most people, the normal platelet count is 150,000 to 450,000. A person is diagnosed with I.T.P. when leukemia and other cancers have been ruled out, when their white blood cell count is normal, and red blood count is normal, and when their blood platelet count is below 100,000. (The platelets are getting attacked and destroyed by the person's spleen.) A person with I.T.P. who has a blood platelet count of 10,000 is considered a severe and critical case. Our Cadi, as of yesterday, had a blood platelet count of 9. In some cases of children, no treatment would really be necessary, just monitoring of the blood platelets. But because of the dangerous count, Cadi had to begin treatment immediately yesterday.

She had a seven hour intravenous treatment of Gamma Globulin (IGIV) - this is basically plasma that people have donated. The hope is that her spleen will now go to work attacking and destroying that plasma and leave her blood platelets alone. She was also given Prednisone. Part of the reason for the Prednisone is to combat the side effects that come with IGIV - vomiting, severe headache, neck pain, and aseptic meningitis (from what I understand this is basically all of the symptoms of meningitis, but not the disease itself). Prednisone should also help the platelet count to begin to increase. However, it has horrible side effects - high weight gain, puffy cheeks, irritability, increase in appetite, etc.

IGIV and Prednisone are usually pretty beneficial in a patient with I.T.P., however it usually only brings the count up for a few days and then they fall again. After this happens a new treatment would take place. Cadi will get her blood drawn on Thursday to check her count, and we will go from there. Our prayer is that her count would go up and stay up. We serve a BIG God.

At this point in time we do not know the long term prognosis for Cadi. We are hoping that she has an acute case. What this means is that it was a sudden onset after a virus, fever, or immunizations (she had all three recently), and that it will go away in six months. We are praying against it being chronic - a disease she will fight her entire life. If the platelet count stays low for a period of six months, it is at this time she would be diagnosed as chronic. At this point of time there is no way to tell which it is. It seems it could be acute, but the doctors are very concerned because of how low her platelet count is. That is usually not the case in acute diagnosis, but we pray Cadi is the exception.

Here is where we still need major prayer - Cadi is at a huge risk for internal bleeding and hemorrhaging because of her count. She has to stay very low. She cannot get bumped or run into anything - especially in her stomach or head region. If she does, this could be life threatening at this point. Cadi also cannot get a cut right now, as her blood is not really clotting. This is the part that I am terrified about. Going out of the house is potentially dangerous for Cadi. If she were to slip or fall or bump heads with someone, it could be fatal. We need prayer warriors. We need wisdom. How do I hover over her 24/7? I don't. I have to do my best and trust my God, but friends, I am scared. Please pray. This is where we are right now. We will hopefully have new, higher counts by the end of the week!

Your prayers have meant more to our family than we could ever say. As we drove to the hospital yesterday, Jim and I kept remarking over the peace and calmness that we felt. Your prayers covered Cadi, and she was so brave and a shining little light on that oncology floor yesterday. Your prayers covered Scotty as he was with my parents, and Jamesy as he was so calm and well behaved during the long hours with us at the hospital. Thank you, thank you, thank you. Please keep praying for our Cadi. I will keep updating. Today I am just soaking in my children - this life is but a vapor.

.We Need Your Prayers.

I never expected to wake up and encounter what happened today. Our sweet little Cadi is very sick. She had a virus around Thanksgiving time that I had mentioned (Scotty had it too). Cadi has never completely recovered. She continued to have very swollen glands around her neck - visible even. She has been very tired and quiet and just plain off. The past two weeks she has been waking up with bad nose bleeds, and this Tuesday she developed an unexplainable large bruise on her arm. It was all beginning to concern us a bit, but we kind of wrote everything off - she was tired because we have been busy and she was still run down from the virus, the bloody noses are from the dry heat in our home, and maybe the bruise was from playing too rough with her brothers. This afternoon we came home from church. Cadi was dancing around our kitchen with her arms raised, and I heard Jim gasp. I turned to see a very large, very black bruise on Cadi's side. Cadi could not remember getting the bruise, and it did not hurt to touch. Jim and I became scared.

We ended up in the ER for several hours this afternoon. Cadi had a CBC done, and her platelet count was extremely low. It is a 9. You can google what the normal platelet level is. This is crazy low, but the good news is that her white blood count and red blood count are normal. Her liver level is elevated as well. A test for mono did come back as likely positive, and the doctor's are suspicious that she may have Epstein Barr - although mono and Epstein Barr are very rare in children. We go to a Hematologist tomorrow for a full blood work up and a diagnosis. There is talk of beginning her on some steroids to get the platelets back up and possibly admitting her to the hospital. We are praying that it is as simple as mono or Epstein Barr, but she will have some scary things ruled out tomorrow. Things I am not even willing to type out here. I cannot go there now.

But no matter what, my God is in this, my God is the same. He loves Cadi more than I do, and He promises to walk this with us. We are confident in His goodness and faithfulness. My head knows all of this to be true.

But a tiny part of my human Mommy heart is scared to death. Please, please take a moment and pray. We need your prayers.




Subscribe in a reader

.I Remember.

I remember quickly typing out this post while my firstborn soundly slept in a bouncy seat at my feet. I remember our tiny apartment and the wonderful first moments of being a mommy. Looking back on this post I cannot believe how quickly time has passed, how much Cadi has grown, how much I have grown, and how different our lives are. But for a moment I am right back in that moment, because I took the time to capture it. Thankful.

This post was originally published on my old blog on February 23, 2006. Today I remember this moment, but at the same time I am intentional to capture the new moments for this day.


One of my favorite times as a Mommy is bath time. I just love bathing my chubby little girl. She is so happy while getting a bath. I love the smell of a clean baby and the feel of soft satiny baby skin. I love sweet-smelling, silky baby hair that swirls around in a wispy halo on baby's head. I love the fresh miniature bottom, cleaned and ready to be diapered, the ten tiny toes, wrinkled and wiggly. I love the beads of water droplets that stick to her long, dark lashes, that give her that fresh face appearance. I love when my sweet smelling, toweled baby, curls her warm little body into mine, and nuzzles her head into my neck, cooing and blowing raspberries. I love how my little one looks in her yellow hooded ducky towel - truly a bathing beauty. I love the special bonding time we share while lotioning her little body from top to bottom - the smell- so sweet. I love when she is all dressed and is sleepy from her bath. The groggy smile, just for Mommy, melts my heart, and her droopy eyes make me smile. Dear God, thank you for these tender moments with my tiny daughter. Help me not to take these everyday miracles for granted, may I always remember bath time with my baby, and cherish each moment as a special memory to be preserved in my heart forever. . . . .I am blessed.

Subscribe in a reader

.First Day of First Grade.