Latest and Greatest
Saturday, 12 May 2012
-
Let's begin with clinic.
Thursday was clinic day. If you did not know this already, Ike goes once a month to get an IV chemo and other anti-biotics. Every three months, a spinal tap is added to this. Plus, we take many other chemo meds orally at home. Everyday. We have 1.5 years left of this.
We had our FAVORITE nurse, which ALWAYS makes the day go better! Wait, let me begin with some awesome news! IKE GAINED 3 POUNDS! He still is not eating, but he is drinking Ensure like it is no one's business! This past month has been the most pleasant yet!
Anywho, favorite nurse. She got him in ONE POKE! I could have skipped! When his arm was taped to the board, he proceeded to tell every person he met how much he hated pokes and he was mad at our nurse for hurting him. I told him to let it fly! I would be angry if I had to get poked day in and day out!
The appointment was just over 3 hours. But once the IV was in, the day turned out to be pretty pleasant! Ike, being so independent, started pushing his own IV pole around! We spent most of the time in the play room, and played! Ike's ANC was 2100. So, they upped his methotrexate. AND.... They are scheduling another CT scan to check his blood clot! I do not have a date yet. I will let y'all know when I do!
Clinic days are getting much better. I think for many reasons. Ike is getting used to it, and he is older. You can't really explain to an 18 month old that he can't run with an IV in his arm.
Speaking of 18 months, something REALLY dawned on me this month.
Gabrielle is almost 19 months old. In this picture she is 18 months old. She says one word. Mama. Ike was diagnosed at 18 months old, AND I had another baby. This infant would have been in treatment for one month already. It blows my mind. And quite frankly, I NEVER WANT TO DO THAT AGAIN!
Pretty crazy, huh?
And now, onto the best part!
I stole some pictures off Jacob's phone. They are all pretty much of Laney!
At the Tulip festival.
Last night, we went to the park. Laney and I found a garden snake! It was about 6 inches long! Super cool! I caught it, and Laney grabbed it by the tail. Ike walked up to touch it, and what happens?!?!? It bites him! Two tiny teeth marks! Unbelievable! Bite the leukemia kid! It took everything in me to not freak out, and run to the ER. But, his hand did not swell. Ike just refused to touch it again! Laney, in the meantime, was the life of the park! Carrying it all for everyone to see! I love that she is not afraid of things like this!
She can't wait to show this one to Bumpa! He is TERRIFIED of snakes!
We soon let him go, and he quickly slid underneath the concrete ledge! I don't blame him!
I also found these REALLY funny pictures on Jacob's phone to show y'all!
This is how you will find me. At least when I try to sit down! I'm attacked! Everyone wanted to sit on my lap! Gabby, in particular, HATES sharing my lap with anyone!
Cracks me up! Sometimes, we have those moments where our kids just crack us up. Where we can just enjoy them! In this picture, yes. Today? Not so much. Day 2 of steroids is kicking our butts! 3 days left to go!
And that is it!
Adios!
-Linda
Monday, 07 May 2012
-
Alright, I know it has been a long time. So here goes!
Things have been some what normal! I like normal! We like to be busy! So get ready for a long post!
This picture is of Ike when we went to the GI doctor! His hair is so poofy!
Did you know that you can get a kite at Meijer for 1.27? Well, we did just that! We love flying kites!
Oh, and the joys of allowing your children to self feed! I know that every child has to go through this. But really, I hate it.
All I can say is "SO MUCH LAUNDRY!"
And Laney, the photographer....
April 25th was my birthday. I turned 31. And I tell you my age because I have decided and am claiming that my 30's are going to be the best years yet. The 20's can go. Time to enjoy my life!
And I say that because on my birthday, we met with Make A Wish! The beginnings of our trip to disney world!
My kids were beyond geeked! We ended the night with Laney AND Ike dressed as princesses dancing in our livingroom! It probably did not help that we had decorated sugar cookies AND I let Ike and Laney make my birthday cake. Which the batter ended up mostly in their tummies. You can imagine the sugar buzz going on here!
We then got our pictures taken by the AMAZING Kasey!! My kids were so AWFUL! Gabby cried for most of it. The ducks almost lost their lives. And I was pulling my hair out and bribing them with cookies to get them to stand still! She still got great shots!
Our family!
We have been visiting Jamie when we can! She is doing well. A lot still needs to happen. But with occupational and physical therapy every day. Jamie can walk short distances without a walker. And is talking well! She has a TON of appointments! Although an adult, it is much like a new born baby! Jamie is battling with diabetes, so she has to be on a special diet, and eat so often. Plus she is on steroids, so she is starving. My mom and Step-dad are basically making food and helping Jamers! We are all so thankful that she continues to improve!
So, with the nice weather, we got Jamie outside blowing bubbles. And Laney and Grandma washed my car!
Ike is training Gabs early!
Laney was making mud soup, and then smeared it all over my van so she could wash it again.....sigh.
Mud soup!
Jamie and Ike!
Dad and Barb came over for a quick visit. Which turned into an impromptu music show!
And FINALLY! Saturday we headed out to Tulip Time for rides, animals, and fireworks! We had a great time even though we did not get home and into bed until midnight! And guess what? You know how everyone says, "Oh, they will fall asleep in the car." NOPE. Not my kids. For an hour car ride home, EVERYONE stayed awake. My kids are party animals!
Gabby, is fearless. I guess anybody would be if they led the life she leads!
Ike did so good on the rides! He hated waiting in line!
Jacob had Laney, so I did not get much pictures of her! But, a good time was had! We will be doing that again next year! The fireworks were AWESOME!
And that leads to Ike. We have clinic on Thursday! Fun times. We have a year and a half left of this business. I hate wanting to hurry life, but this part can pass quickly. Thank you very much.
And that my friends, is my life!
Thanks for journeying with me!
Linda
Saturday, 21 April 2012
-
Wow, lots of posts in one week! It is because I have been taking more pictures and LOVE to post them!
Back in December, Jamie called me to let me know that she had purchased Toby Mac tickets for us for my birthday. I LOVE Toby Mac. So, I was pretty pumped to hear that! The date was set for April 19th.
But of course, life happens.
Between my sister, Dads, and Mom. They decided that although Jamie was home, that it would be best for her to stay home. She is still pretty weak, and her blood sugar was out of control.
I was sad.
When I found out about the brain tumor, I remember crying with Jacob in the garage. I was sad for so many things. I didn't have any idea what was going to happen with Jamie. And of course, your mind goes there. I went there. Then my husband, in his sweet way, prayed with me that Jamie would be able to go to the concert with me.
And although Jamie didn't make it there physically with me; spiritually, she was. So, really, God did answer my prayer. Jamie going WAS an option. For this, I am grateful!
So, one of my best friends from highschool, Deanna, went with me! We recently reconnected for lots of reasons! Her husband got MY husband his current job and they work together. We also have talked since Ike got sick. And well, our kids get along great! So, it was fun to go with her! I was glad to have her with me, as I was pretty sad Jamie couldn't be!
So, in light of this heaviness. God reminded me once again, that He is control
I attend this AMAZING bible study that started 9 years ago! Currently we are reading "Battlefield of the Mind" by Joyce Meyer and doing the workbook. Coincidentally, this weeks lesson was just for me.
1 Peter 2:19-2519For one is regarded favorably (is approved, acceptable, and thankworthy) if, as in the sight of God, he endures the pain of unjust suffering.Amplified Bible (AMP)
20[After all] what [a]kind of glory [is there in it] if, when you do wrong and are punished for it, you take it patiently? But if you bear patiently with suffering [which results] when you do right and that is undeserved, it is acceptable and pleasing to God.
21For even to this were you called [it is inseparable from your vocation]. For Christ also suffered for you, leaving you [His personal] example, so that you should follow in His footsteps.
To sum it up:
It is not suffering that glorifies God, but that attitude while enduring the suffering.
Pretty timely, huh?!
So, anyways, on to pictures. Really the best part!
Toby Mac!
Yesterday we went and visited Aunt Jamie!
Jacob cut Ike's hair. I don't think he did too bad!
Yesterday, Laney also had her school carnival. I did not get any pictures of that. Let's just say Ike was coming off his steroids, and he was AWFUL! Like I have never seen before. I was glad to come home!
While Jacob was getting Gabs ready for bed, she was being super cute. I quickly grabbed me camera, and got some super cute shots!
I just chuckle all the time! Gabs looks so much like Jacob, it cracks me up!
Gabs and her dad have the hugest mouth! I don't think I could even open my mouth that big!
This girl LOVES her dad! I think he is pretty awesome myself!
And that my friends, is ANOTHER update!
Adios!
Thursday, 19 April 2012
-
Well...
Jamie is home! At my Mom's that is! She has been home for 2 days.
She will have physical therapy every day at the house. But in general, she seems to be doing well!
So, that was a quick update. Plus, I just wanted to show you some recent pictures of the kids!
My kids stand by the door to go outside. So, we spend as much time as we can out there!
Are your kids obsessed with the hose? Mine sure are!
And Gabs, see the huge red mark on her forehead. I'm pretty sure Ike hit her with the hose!
Then we have been flying kites, eating snacks outside, jumping on the tramp, and swinging constantly!
Ike wanted to see a picture of himself...
I can not stand his long hair. I have been begging him every day to go get it cut. Soon. I hope.
He looks pretty normal now! I really enjoy that. Now I just have to get him to eat. Lately he has been getting Charley horses in his legs. Which lead to constant screaming. Jacob wrapped his legs in the heating pad last night, and that helped a little. He has been LOVING chocolate milk. Which is a blessing because we mix it half and half with ensure. So, at least he is getting some calories! This kid is almost 3 and weighs only 27 pounds. Gabby is 18 months, weighs 22 pounds, and is in the 10th percentile for weight. Just to give you an idea how under weight he is. But thankfully, that is about it! Only 1 1/2 years left of treatment. Halfway there!
So, that is my life right now! I'm working on taking as many pictures as I can remember. To remind me to be thankful.
-Linda
Saturday, 14 April 2012
-
"Amazingly-well"
"Looks amazing"
"We got it all"
"Benign"
"Passes all the tests.."
These are quotes that still make my heart skip a beat.
Thursday started out chaotic as possible. Jamie's surgery was scheduled for 7:30, but over night her platelets dropped significantly. So, Jamie needed an emergency transfusion. Her blood type is AB-, so it is difficult to find blood and things like that for her. My dad called me at 8 to tell me they were delaying the surgery for a couple hours because of this. We said a quick prayer to move things along, and get the platelets there quickly. Fifteen minutes later, my dad calls back. They had the platelets and were heading to OR prep. (I found out later LOTS of other people were praying as well. But, a quick miracle none the less.)
After that is was a waiting game!
My dad came over to watch Ike because we also had clinic that day.
We also had the GI doctor and Gabs 18 month appointment. How I managed to schedule all these things on this particular week is beyond me!
The GI doctor requested for some labs to draw to check to see if one his chemos is aggravating his pancreas. The 6 mp has a rare side effect of agitating the pancreas, so that whenever somebody would eat, they would get horrible stomach aches after eating. At clinic, they drew labs for that. We also have a scope set for May to look at the inside and get some biopsies.
We got home around 3, and Jamie was just coming out of surgery.
The neuro surgeon said he was pretty sure he got it all (the MRI confirmed this). The plastic surgeon was able to close the hole in her scalp, and when she woke up, she knew everybody.
Now we are just praying against infections, and while her brain goes back to normal, no lasting effects. The doc said at least 6 months for us to find a "baseline" with Jamie. And weird things could happen in between as the pressure in her brain has been taken off and refills the hole where the tumor was.
Oh, and the other 2 brain tumors they saw on the original scan? When the surgeon was in there, he took a look at where they were SUPPOSED to be. And they are no longer there! No more radiation for Jamie! Praise God!
I have pictures of her incision, but I will put those at the end. They are pretty graphic, so don't feel you have to look at them.
In the meantime, life went on...
I yelled at Gabby to sit down in her chair. And this is what she did!
Hi JACOB, with your big old mouth!
On Easter, I let the kids have it!
All the candy that is! I seriously regretted it later. But it was fun in the morning!
Yes, that is her CHEEKS FULL of chocolate!
Laney got new makeup.
Fistfuls of candy.
And Ike. With his helmet of hair. I hate it.
And just some random pics of the day.
Why does ANYTHING she does turn out so cute?!
And Laney wanted a few photos of her with her makeup on.
And below are the pics of Jamie and her head. I will do just her and I first, but the end will be the incisions.
Jamie, you look awful here, but I like it of me. Sorry! It goes on here!
And I hate this one of me, but love it of you! So, I will make it fair!
My Mom had us put on stethoscopes, it was really cute!
And, battle wounds!
And, well. That is my update for now!
Linda
Saturday, 07 April 2012
-
I was chuckling to myself today. I was talking to somebody about my blog, and they asked, "How do you find the time?!"
Well, really. I love to do it. There is something so wonderful about reading words that I have typed. Plus, I feel it helps bring much clarity to my thoughts. And once they are written down, I feel like I can stop going over and over them in my head.
Let's start with the good stuff!
Gabby. So cute and so feisty!
I had to wash her feet because she was once again covered in mud. So, like any other Mom, I put her in the sink! She really loved it!
She then tried eating the bubbles, so we were done with the whole bubble thing.
I love holidays. Really, any one will suffice. I use them as excuses to make cookies and other festive things!
We started with coloring easter eggs.
Cute right? Well, this was taken just before Gabby DUMPED this all over the floor. While I was cleaning it up, Laney grabbed her "girls" and took them swimming. Food coloring and all. My floor will never be the same.
And of course.. COOKIES!
Someday I will make and sell these cookies to raise money for the ministry I am going to create. But for now, it is a stress reliever!
Laney is only getting better at decorating them! She doesn't lick her fingers, and she enjoys creating designs! I LOVE it!
Ike and Gabby just made a mess and ate frosting with their spoons.
Needless to say, I almost strangled them by the time nap time came around! Sugar turns these kids loopy!
We also colored more eggs with our friends Emily and Kyleigh. Here, Emily is showing our BLACK egg. We have accomplished this feat. Try it one time! It is hard! We foundd out the trick and took a picture to prove it!
And Renee, this is for you. Elmo's world was about penguins.
This picture is 1 of about 100 that Laney took of the TV to show you. Be impressed.
Now, down to the nitty gritty.
Jamie.
Where do I begin?!
Since my last update, they sent Jamie home. She didn't even make it 24 hours and was back in the ER.
This time with seizures and memory loss.
For days she was like this. Not knowing where she was, who she was, and who any of us were.
I would be lying if I didn't say that this shook me up a bit. I cried. A lot.
But as the days progressed, they have been able to get her seizures under control. Although heavily drugged, she knows who everyone is. The kids have even gone up to see her. Today was the best I have seen her yet.
I had a moment yesterday with Jamie. I will tell it to you as I was talking to her.
"Jamie, I just want you to know that today, I was praising God for your life. That when God performed a miracle 30 years ago, He had something much greater in mind. Something more than I could have ever dreamed. All those nights we prayed for so many things to be different, our prayers are being answered NOW! The suffering you are enduring now is creating a story so beautiful it could never be made up. The beauty God is giving our family for ashes, is because of you. I am SO SORRY that you have to endure this. That things in your life did not go they way we all would have liked, but here you are, not budging on your faith."
There was much more too it. And I am sure that Jamie will read this tomorrow.
Jamie, you are my hero. I have taken you for granted for SO MANY years. I am thanking God that He is giving me a second chance. A chance at redemption. A chance to be better. Because of your suffering, God is strengthening me in ways I never thought possible. There has never been a great victory without a great battle! I am believing and trusting OUR God! Thank you Jamie. I love you.
Her surgery is set for this Thursday, April 12th. She has to have a platelet transfusion and blood transfusion before she goes in. And on that day, they will remove a golf ball size tumor and Jamie will begin healing. We are praying for safety during surgery. That she does not get any more infections. That her body will produce what it needs to HEAL! That the plastic surgeon can put everything back together and that these seizures permanently cease. Just to name a few.
So, here goes.
Thank you all for journeying with me. I will update of any changes!
-Linda
Friday, 30 March 2012
-
Well, I am going to do my best, so please be aware there may be some erratic writing.
Jamie.
Sweet Jamie.
Today, 3/30, she will be leaving the hospital. They will be scheduling her surgery in 2 weeks when the Neuro-Surgeon is able to do it. She is heading to my Mom's.
There are many things about this statement that is very complicated. I don't really want to go into all the details as it is very overwhelming. My Mom will be Jamie's nurse and 24 hour care these next two weeks. The wound on her head where the skin cancer was is still open an unhealed. Her blood sugar has been erratic, as well as her blood pressure. There will be a nurse stopping by twice a day for blood draws and to do vitals. And Jamie will wait.
Prayers for Jamie. A renewed hope and strength to overcome all the obstacles that are in front of her.
Prayers for strength for my Mom as she becomes a nurse over night.
Ike.
I have barely even had a chance to think twice about you.
His whining has continued, and we still unsure as to why. We got an appetite stimulant. He asks for everything under the sun to eat. I make it, he doesn't eat a bite. Sigh. Our appointment with the G.I. doc is April 10.
But, God.
I love that statement. I think Joyce Meyer is who I heard say this.
God has shown me a ton of tender mercies along the way.
God has used Ike's leukemia for good in so many ways in the situation, it has been incredible.
These few things that I have seen be used for good have been made my journey with Ike WORTH IT! Again, I would STILL never ask for Ike to have leukemia. But, this is the path that God chose for me, and I am choosing to find glory in it. And God has been faithful.
One of my dear friends bought me that book, 1000 gifts. I have been reading it slowly and enjoying all the truths that I have been receiving.
We all have a life that we want. In our minds we paint this beautiful canvas of what our "ideal" life would be. Haven't you? I have been trying to see mine. It would have included: A perfect marriage, obedient children, gobs of money, no illness, no sorrow, constant joy, and a perfect house. Just to name a few.
Along the way, MANY things have come from behind my picture, poked holes in it, slashed it, and cut out the parts that I have wanted.so.bad. In this book, it challenges you to look through these holes, as the holes and missing pieces are opportunities for you to see God. I even took it a step further and imagined his brightness shining through those dark places in my "perfect life". We all choose to see these pieces as either a place taken from us or to take it as an opportunity, or gift, to see God in it.
I am not saying this has been easy for me. The pain seems to overtake me some times. But slowly and gently, God is stopping my "busy" hands from moving. He is forcing them to make a cup, and receive the gifts He wants to give me. No amount of busy can give me these gifts. I have to choose to sit down, and open my hands.
So, as my life continues to bring about new pain, I am thankful for the light that is going to shine in my canvas. I can only imagine what this painting will look like at the end of my life. Maybe it will all be destroyed (in a good way) and all you will see is God brightness and glory, and no amount of my life will be left. I guess that is what it means to make our life a living sacrifice.
This is the choice I have made, and will continue to make. To lay down my perfect life for His glory.
All done with preaching. I will continue to keep you updated on Jamie as best as I can. The details seem to change too often, so I am nervous some times to post anything. But, you have your mission! Do not let those prayers cease!
Thank you!
Linda
Tuesday, 20 March 2012
-
A quick update on Jamie:
Well, my sister is still in the hospital.
Her stitches are still infected, and they had to put a hole in her head to drain it. While that has not helped much, they will be putting her in a hyperbaric chamber twice a day to try to get it to heal faster.
They can not remove the tumor until this infection is cleared up, so we need to be praying that it heals so they can schedule the surgery.
Jamie's IV burned her from the anti-biotics (the same stuff that burned Ike!) So, they started another IV, which blew, and now they are going to do a PICC line.
Her blood sugar has been whacked as well as her blood pressure. My mom and I think it is from the tumor, but until that is gone, there is no way of telling.
So, please be praying for complete healing of my sister! That the docs can figure out what is causing all these weird things to happen to her! Also, for strength for all my parents! They are all exhausted! Not only from worry, but staying with Jamie, and also making a room for her to stay!
As for Ike...
I am PRAISING the LORD!
This has been the BEST week of steroids EVER! Yesterday he ate 6 peanut butter and jelly sandwiches. I could not believe it! And the whining only started today, and today is the last dose of steroids! I am SO grateful!
I think that Zoloft has really helped him.
So, I will keep you updated as I know more about my sister.
Sunday, 18 March 2012
-
Wow.
A lot can happen in a week.
I didn't post it all over Facebook, as I wanted more answers before I shared more of my life with you.
My sister Jamie has MANY complications from leukemia as a child.
Last week she had surgery to remove skin cancer on her head. This was from MANY rounds of radiation she received as a child to save her life. Shaving her head, hours of surgery, and 72 stitches later, Jamie was supposed to recover in 2-3 weeks.
2 days after surgery, she kept throwing up. Her stitches became infected. All the docs were concerned, so they sent Jamie and my Mom to the ER to take a look.
She went in for some tests to see if the infection had spread, and they found a brain tumor. The size of a golf ball.
Not cool.
It was late. No one had any answers. We waited impatiently for the neurosurgeon to come and talk with Jamie about the next few steps.
All this while she was waiting to hear from her liver doctor to find out if she was responding to the treatment for her Hep-C. They are pretty sure she acquired this during one her many blood transfusions while she was in treatment for Leukemia as a child. And her numbers needed to be at a certain point to indicate the medication was working. If it wasn't, they were going to stop treatment, and there was nothing medically the doctors could do for her concerning Hep-C.
Can you hear the tizzy we were all working up to?!
This happened on Wednesday. I had clinic on Thursday.
And you know what. I was dreading Thursday.
More answers about Jamie. Ones that I may not want to hear. Clinic and Spinal tap day with Ike. Which meant starting another week of steroids.
Needless to say. I was OVERWHELMED.
I hit my face. I ran to God as NEVER before. I cried out as this triggered so many emotions in me that I could not even describe. ALL these issues were directly from treatment from Leukemia! I am sure you can imagine all the thoughts running through my mind!
As I ran, talked to some of my closets friends, sat in my husbands loving arms, God reminded me of the song by Casting Crowns, "The Voice of Truth."
I listened to that song over and over, and cried out to my Father to make me as brave as David. To refuse to get back in the boat like Peter and walk on that water. I cried out for that peace that only can come from my God.
And you know what?
He is faithful.
Clinic went amazing.
Jesus showed up with His tender mercies all day.
Clinic was SLOW! We were the ONLY spinal. The IV took 5 minutes! The play room was empty! (As I have to follow a 2 year old around with an IV pole!) I was able to find a babysitter last minute! Laney had a GREAT time! ALL my children took great naps, and I did as well! Jacob's was able to help me when I got home!
Then, that night, I got to hear the answers I wanted to hear.
It is operable. It might be cancerous, but most likely not. She is responding to treatment.
I sobbed.
Now, there are more complications they are filtering through. They found two other spots that will have to be treated with radiation. Her blood sugar is crazy, as well as her blood pressure. Jamie is still feeling pretty sick. And well, she has to have brain surgery! Plus this infection needs to clear up before they can do ANYTHING!
Jamie is still in the hospital, and we are not sure for how long. We are just waiting.
So, that has been my life these past 4 days!
...deep sigh..
So, onto the stuff I love.
Funny kids. In pictures.
Yai-Yai made Ike a road with tape! How cool is that?!
I swear, other than this look, you can not even tell they are sisters!
Ike being Laney's "poodle"!
Laney PRAYING for rain!
Gabby and her infectious smile. You will pretty much always find her this way!
And that my friends, is my life! I should be on reality TV.
That is all.
Friday, 09 March 2012
-
Ok. A quick update on Ike.
As I have written, Ike has just been off. He asks like 100 times a day for me to hold him, and just wants to watch TV. Plus, he is REALLY sensitive! Everything has been making him cry!
So, on Tuesday we has his cortisol level checked, and it came back normal. We changed his reflux med, AGAIN. So now he is on a zantac pill because he said the liquid burned his tongue. After talking with Mary the PA, we have decided to get a referral to a GI doctor. I feel really good about this, and would just be so thankful to hopefully figure out what has been going on with his little body!
Really, life pretty much consists of going to the doctor, mixing meds, and forcing him to drink it. I am CONSTANTLY doing laundry as he pees through everything. At least he is drinking some calories. He really has not been eating a ton, which alerts me that something IS really wrong. But once again, I find myself grateful because at least he is RESPONDING to treatment. And if you met him, you would never know that he was in treatment. For this, I am grateful.
I have been clinging to a word from the bible. Psalm 23:3, "He restores my soul."
And yes, He is.
Monday, 27 February 2012
-
I am writing this from an iPad, so please ignore the errors and erratic writing.
This update is late in coming as the past two weeks have once again been significantly hard.
To name a few:
Gabby was running a fever of 103 for about two weeks. Yes, I waited a while as I could control it with ibprofen, and really, I just don't freak about fevers anymore. Her butt broke out in blisters, and well, we ended up in the er thursday night. Ear infection among other things I am sure. She is also getting all four molars. At once.
Ike has been awful. He is constantly complaining he doesn't feel good. After our week of steroids I expected him to perk up, and he got worse. If that is even possible. I had clinic on Thursday. Which after an hour of trying to get the iv started and trying to explain to the docs the depth of Ike's pain, I was left a sobbing, wet mess. Yes, the social worker was once again called. And we are trying a ton of new things to figure out why Ike is crying all the time. His ANC is over 5000, so it has got to be something else. We are getting his cortisol level checked next week. They also started him on ANOTHER anti depressant. Which is not covered by insurance AND left Ike a sobbing mess. We stopped that after 2 days and are now trying another one. And another drug that they added to his regiment is covered by insurance, BUT only the off-brand one, which has been on back order since June. After, no joke, 20 phones calls, my kids locked in their rooms in tears from me yelling at them, we figured something else out. It was a nightmare. Ike is still complaining of not feeling well. But we will see. I am documenting every day to share the details with the docs.
And laney..oh laney! It is always something! She decided to take a syringe full of Ike's meds. Not just Meds. I didn't even call poison control or the doc. I just burst out laughing. I couldn't make all this stuff up if I wanted too! This has caused her to have a bladder infection. So she wakes up about 3 times a night, having wet the bed. It took two days for the steroids to wear off, which made her extremely hyper. I have been pulling my hair out.
We missed church after the steroid incident. And thankfully my church does podcasts. Pastor Sam had a great message. And he briefly said,"are you weary? When was the last time you hit your face and cried out to the holy spirit to fill you?". Now, I do get daily time with the Lord. But i was quickly reminded of Beth moore's study, believing god. And I got on my floor instantly, and hit my face. I cried. Hard. A lot. And you know what, the lord heard me. He filled me up. I went upstairs a better person.
And things have gotten better in my heart. Mind you, my house is still crazy. But, as I type this, I am in a hotel room in downtown Chicago. Looking out the window at the John Hancock building where Jacob asked me to marry him 10 years ago. Our nine year anniversary is march 1st, and as a gift for Christmas, my mother in law got us a hotel room down here and offered to watch our kids. The greatest gift of all. God must have ordered our steps, because this break came right at the perfect time! And of course with collaboration of other people helped pull this all off! Two nights away. No kids. I am in heaven.
And as Jacob and enjoyed our time together, uninterrupted, I am quickly reminded what a wonderful man I married. Don't get me wrong, we have had our fair share of hating each other. But this past year, my husband has been such a strong rock for me. I have appreciated his strengths more now than ever. After my horrible day at clinic last week, I came home wanting a fight! And he gave me one! But then, while I was sitting in my chair, wanting to "win", he came over, picked me up in his lap like a child and played the mot beautiful song for me. I sobbed. Like REALLY sobbed. Jacob has continually humbled himself to me over and over these past nine years. Not in a wimpy way. He valued me and his love for me MORE than being right. One of the many strengths that I have grown to appreciate in him.
Jacob is a very private person, and I have not written much of him on here, but I want you all to know that he is one of the greatest gifts I have ever received from God. And although sometimes I want to kick him, my love for him has grown. And through Ike's sickness, he is and has been stable and able. Babe, I love you! Thanks for never giving up on me!
So, we are are going to head out downtown, and pretend we are not parents!
Hopefully you made it all the way through! Thanks for reading!
Linda
TrueAbout Me
-
I married my high-school sweetheart, Jacob Quist. We've been married since March 2003. I have a 2 daughters. Laney born in June 2007 and Gabrielle in 2010, and a son, Isaac born May 2009 who is now battling Leukemia. This is the story of my life.
Connect
Weblog Archives
Don't worry - your calendar is here… to see it in action just click "Save"
above and refresh the page.
