We had Clinic again today and, hallelujah, it went much better than last week. When we left home this morning, Kari was in the best little mood. She sang, she talked, she giggled, she played....until we got to the parking garage at Clinic. She got sooo mad at me because she thought we were "never coming back here, mommy." Seriously. I had to pretty much drag her in and drag her down the hallway to Clinic where Meiko (one of the nurses) took one look at her and said, "Oh, are we in the same mood as last week?" and a couple that we see there every week said, "Oh, no. Another bad morning?" After about 20 minutes, however, she was fine and dandy. She actually had a great conversation with Dr. Greenwood about bath fizzies and bubble bath.
Accessing the port was still very scary for Kari and almost as bad for me. They say this gets easier so I'm praying it gets easier quickly. In an earlier post, a cancer mom commented and told me to take snacks after spinals because her son always woke up hungry. I can't remember who it was but I took your advice!!! Definitely a good idea. :) Thank you!
Kari's counts are up to 6600!!! All of her triglycerides and cholesterol levels are back to normal as are her liver numbers that were so out the roof. God has definitely moved for us in the past few weeks. Kari is doing great and it's only because of the Lord! He is worthy of all the praise for this miracle. Although Kari has not been healed completely of leukemia, He has blessed us greatly so far.
I never want my blog to be a point of bad news and a depressing place for people to read. Cancer, especially in children, can be very depressing to those that have never been close to it. Many years before Kari was even diagnosed, I followed several blogs and Caring Bridge sites and prayed for those kids. At times, I remember almost dreading the news that I would find on those sites because cancer isn't easy to take nor does it give "breaks" to people, especially children. It's so unfair for children to have to go through this horrible disease!
HOWEVER...I also remember learning how to pray for those in need and being more thankful for my own family's health. I feel that it's needful for us to join in prayer together for those around us.
With that being said, we received bad news from several of our friends today. First of all, most of you that have followed my blog since last year remember my request for prayer for my Aunt Ellie. She had pancreatic cancer and had surgery last June. She's done very well since then but received bad news today: the cancer has come back as Stage 4. We are all devastated and we ask that you please hold her up in prayer. I know she begins treatment Thursday as there isn't a surgery that they can do at this point.
Also, an 18 month old boy that was adopted from Africa by a family in Lexington has leukemia and just found out he has to have a bone marrow transplant. As you can imagine, it's very hard to find a match for him. Please pray for a miracle for Baby "T". Another 11 year old boy is really struggling with his counts...he's receiving transfusions weekly and is so weak right now. Please pray for his strength!
A praise report....16 year old Michael that is so dear to our hearts is doing much better! His counts are staying up and he is being able to receive treatment as scheduled right now. We just asked for prayer for him last week and he is much better! Thank the Lord and thank you for praying!
On a lighter note, Matthew and I are hoping to take the kids on a little "trip" next week while Kari is feeling good enough to go. It's not a definite thing yet but we're already excited about it! Kari is already planning our day out. Praying that Matthew gets a small break in work to be able to go!
God is good and I'm thankful that He's my heavenly Father. I'm not really sure how people who don't have a personal friendship with Him get through life. He's my Rock, He's my peace, He's my comfort, but most of all...He's my friend.
Last week, I asked Kari to tell me something fun she would like to do for a day. I figured since she was feeling good and her counts were good that we would go out for a day and have some fun.
Yes, she's my child--she picked shopping at the mall. Oh, how happy this made me. :) The pictures are from my phone again...I had no hands left to carry a camera!
Aunt Lacey, Lashei, the kids and I headed to the mall Friday morning after stopping at the bank for some blue suckers. Thanks, Junction City, for saving the blue suckers for my kids. They will love you forever and so will I because they work great as bribes for Malachi when we're into some serious shopping and need a distraction. His dentist hates my shopping trips!! Ha ha!!! I'm only kidding...he only had 2. The rest of the time I fed him cookies with M&Ms in them. (Oh, I kid! Malachi was actually terrific and we didn't need many distractions for this trip.)
We visited Build A Bear for the first time. I'm not sure how we missed this place all these years. It's fabulous and we spent quite a bit of time there! Malachi fell asleep right before we went in here so Kari was in heaven being able to shop to her little heart's content!
Lashei and Lacey had to have some relaxation. LOL! Kari and I almost didn't get them back up to finish shopping.
Kari and Malachi rode the Motion Master ride that Kari loves so good. Malachi is a silent participant and only does it because Kari asks him to. They both got off mid-ride and Lashei and Lacey finished it. :)
Lashei helped the kids play some kind game in the middle of the mall.
We had such a good time and it was so nice to almost feel normal again! Kari ran around the stores finding things she just had to have or she and Malachi played hide and seek in the racks of clothes. Malachi is a good sport when it comes to shopping and he got to pick out some goodies too!
Saturday, the kids and I spent the day attempting to put our house back together. Their rooms are now switched but Malachi's walls are still pink as is his bed! We didn't get to paint this weekend but that's in the plans for the next few weeks. I absolutely treasured the day we had yesterday. The kids played so well together and it was like old times for us. Kari has felt so good all weekend and I've actually had to make her lay down for a nap just because I knew she needed one.
I thank God for these days that are good. It's a welcome break from the rough times. God is in control and I'm continuously thankful for that. Kari sang at church last night and this morning. She sang this song today:
God knows best
God knows best
No matter if you cannot see the way
Still small voice will always bring joy
If you wanna pass the test
Remember God knows best
I haven't said a whole lot about our Clinic visits up to this point because they've been pretty uneventful for the most part.
That, however, changed yesterday. Kari was so tired when we got there because she hadn't slept good in several nights and she had to get up very early that morning to go to Clinic. She was so grouchy and grunted and made a face at anyone who said anything to her. By the time Dr. Greenwood came in to check her out, Kari covered her ears and stuck her tongue out at Dr. Greenwood. Seriously. I teach my children manners and I don't know if she just lost her mind momentarily or if she was just totally exhausted.
Yesterday was also the first day they accessed her port. I feel like I've done very well with the medical stuff up to this point. I've watched the IV being put in and taken out, I've watched them do stuff to her PICC line, I've watched the blood draws and all kinds of other stuff. Those of you who know me well, know that this is a big accomplishment for me!
BUT. The port is a whole different story and I'm hoping Kari and I get used to it soon. She also had to have a spinal with chemo which meant she had to be put to sleep again. Oh, the emotions that I feel during that time. They always let her lay in my arms while they push the "magic milk" through. After about 10-15 seconds, she is just out like a light. Totally lifeless. Then trying to wake her up can sometimes be scary???
So,anyway, we made it through all that and I'm sure there will be more stories concerning Clinic. I just hope Kari doesn't follow after Brooklyn and somehow forward all the Clinic phone calls to my cell phone! Yes, Brooklyn did that which I think is totally hilarious. :)
We've had a wonderful day today! Kari has felt so good and she and Malachi have played so well together. She has had little tolerance for Malachi most days so we've been working on that. She has also accumulated quite a bit of new toys and clothes and shoes and books and baby dolls...her room was starting to be wall to wall toys and everything. So, we've decided to move her to Malachi's room since it's the biggest and move Malachi to hers which involves painting over her pink walls with something boy-ish. Which means my house is upside down right now. So, if you mention coming to see us and I don't sound enthused, that's why. I've recruited some help this weekend so maybe we can get it all finished before too long.
I started walking again last night. It's a great stress reliever and I'm trying to keep myself going so that I can be healthy for Kari. Tonight, we walked with Lacey down to the park. It was so pretty outside that I couldn't resist snapping this picture of Lacey and Kari!
Matthew is still out working. The cattle business is moving fast right now so he's had to be out for a long time this go around. We love and miss you, daddy!
I ask that you all remember all of our friends that we've become so close to at the hospital and Clinic. Kari's 16 year old friend, Michael, is having a very rough time right now. Please pray for him that God would strengthen his body to be able to take the chemo treatments. Michael and Kim...Kari and I love you much! We're praying for you daily.
I just want to say thank you again to our friends and family and those of you that we don't even know for your support and your prayers! It means so much to know that prayers are going up for us so faithfully.
I'll leave you with this question that my friend, Jess, posted on her blog. What if you woke up tomorrow with only the things that you thanked God for yesterday?
Thank you all for praying about Kari being in Latasha's wedding. The day finally arrived and Kari was able to get through the whole wedding before she totally crashed! This day was special for us and I'm so thankful that Kari and I were here to be part of it.
I want to thank God for some more good news...Kari's body is responding to the chemo and, after her first month of treatment, the leukemia is less than 0.01% in her body! This is what the chemo was supposed to do and we're grateful that we can follow a standard treatment and not a more intense one. God has definitely answered prayers this week! Since we're worn out from the wedding and the weeekend, I'm only going to post pictures and leave it at that. God has been good to us and we're grateful to Him for bringing us this far! Any other emotions/news can wait. :) Daddy is wanting to see pictures of his baby girl all dressed up since he's been away working this weekend. Don't get upset, Daddy, when you see the pictures of Kari holding Justin's hand. She told us today that she IS NOT allowed to have a boyfriend because her daddy said she couldn't. LOL!
Also, word has it that on the Praying for Kari Facebook page, there's a really cute picture of her and I looking at each other during the wedding. I don't have Facebook but I appreciate all of you that follow Kari's page and pray for us. It means so much! Thank you, Jess, for starting the page and spreading the word about our need for prayer! Love you bunches!
Can you believe it? Ashlee has turned me, her mil, Karen lose with her blog???
Oh the things I could do and say!!!! do I want to amuse you or bore you or just update on Kari and go to bed??? First of all, any mistakes I make on this post Ashlee will have to correct for me. I am not a blogger. In fact, this is my first time.
Kari had a really rough weekend as many of you know since we have begged for prayers. Her swelling and weight gain together with the steroids nearly took our "precious princess" as we know her away! Her smiles rarely came. She just looked and acted miserable. Her cholesterol and triglycerides were way too high so they put her on a "LOWFAT" diet. (Do you know how sad it is to take a four year old grocery shopping and her ask, "Mommy can I have some of this or is it too high in fats"? She is way too old for her four years. Course I think we have all aged the past five weeks.) She was too weak to walk. Her breaths were coming in huffs and puffs. Her big beautiful blue eyes were mere slits. She didn't feel up to coming to church Sunday so via Iphone she and Ashlee were able to listen. Pastor David (aka Pappy preached a wonderful message taken for Psalms 23. At the end of the message, Kari looked to her Mom and said, "The Lord is my shepherd, I will not be afraid", Thank God for the little things. Oh for her to have that trust in her Jesus!
So, Monday, when Ash called the clinic they told her to come and let them check her and be prepared to stay. . . . She was feeling better by the time they got there. After a check up, the answer was "this is normal, just more side effects of chemo". Since they had to be at UK at 5.45 AM Tuesday for Kari's port, spinal chemo and a bone marrow procedure, they were allowed to stay at Hope Lodge. Kari just loved this place. From the pictures it looked very nice. Kari and Ashlee had a blast Monday night. Kari was more like her old self and they played and played and played!!! (you have to remember Kari's playing consists of sitting on the bed and playing, she's not very mobile, due to swelling, weight gain and feeling so bad) In fact they played so long they didn't want to get up for their appointment.
Now for the good news!!! Kari was admitted, taken back, the procedure finished, she was in recovery and then dismissed before 12.00 noon. Everything went smooth. She has a port now and Pluto is gone. Not sure what she will name the port. We won't know results until later this week. But... she came off steroids Sat and the swelling has already started to go down. Her levels were over 5000!!!!! And her cholesterol and triglyceride levels are coming down!!!!! Yes, Praise the Lord! For we know that He is in control.
There is so much more I could say but it is late and (tee-hee) I have the password now so I can sneak in and post again! :) Let me end with this, Kari loved the Hope Lodge so good that she talked them in to letting her stay another night. Can you believe it? The kid thinks she's on vacation! Lol!! So she and Ashlee are having another night out. Malachi is with his Daddy and they are having a Father/Son night. Matthew was able to be here for all of this, for this we are thankful.
Kari is very sore from all ahe's been through but doing good. I would like to ask that you pray for Ashlee. Her body is wearing down from the schedule and demands that is being placed on her. Her throat has really been bothering her. I have to say, she is a real trooper. I could never have picked a better daughter-in-law. In fact, I did pick her, lol, years ago! Thank God for our family and friends!
We are still in the hospital but hoping to get out this afternoon. We're still waiting on some of the test results to come back. We've been in isolation for going on 36 hours. Kari is getting restless and I feel so bad for her not being able to get out and play. Kari does have Pancreatitis but can be helped with medicine and special diet I think. I'm still not clear on it all but after we get the test results we will know more of what we're dealing with. When we're in the hospital, I'm reminded of how blessed we are. Yes, Kari is sick and we have a long road ahead of us. But then I think about the others that are in here and have it much worse than we do. Some of these kids have cancers that will not be cured. They are taking treatments with high hopes but all the whileknowing that it may only prolong their life at the most. There are others in here who have to be at the hospital for days at a time for chemo instead of just going to the Clinic for treatments. There are more that have no support at all....they are here day after day by themselves with no one to help carry their load. We are so blessed with friends and family who care, who help, who go out of their way to see that we're not going through this alone. I know that weeks like this will happen. Weeks when I'm scared to death for my baby, weeks when I honestly can't see the good in this situation, weeks when I want to scream "WHY???" But I know that at the end of our rope, God will be there holding out His hand for us to grab onto and that hand will carry us a little further down the road.
We are back in the hospital. We were admitted yesterday. Kari's levels that have to do with her liver and pancreas were all extremely high but her ANC was good. However, they think that she has a touch of Pancreatitis. Also, they think she may have something that I don't even know how to spell but it sounds like it would be spelled C-Difficil. ??? It's contagious and at this time, any visitors have to be in gowns and gloves and all that. So, it might be best that we don't have any visitors at this time because it could be uncomfortable for you all and us. Kari wasn't allowed to eat after 1:00 yesterday afternoon until this morning. She was up every hour last night begging for food and it was HORRIBLE! When they told her she could eat this morning, she ate 2 1/2 bowls of cereal, half of a banana and part of a granola bar! She is on a low fat diet at this time so we're learning to eat better! Since she's been on steroids, we've pretty much been giving her anything she craves. Not a good thing at this point. I want to give God the praise for all of her levels coming down! The doctors were puzzled yesterday morning because all of her counts/levels were all weird and they were honestly not sure what to do. Now they are just saying that her body is bringing them down on its own which tells me that all the people we had praying yesterday morning must have got a prayer through! Her body is doing well and functioning properly and I thank God for that. BUT...after we asked people to start praying, she had no more pain! God is faithful. She still hasn't had any more of that horrible stomach pain even after she ate breakfast this morning. I am so thankful for that! All of these pictures are from Kari's birthday party Saturday. Daddy and Travis walked the kids around on the horse and they loved it! I would say Malachi probably stayed on the horse for a good 2 hours. He looked like a natural up there. Unlike his mother who had a panic attack when they put me on that thing. I once thought I would like to be real cowgirl-ish but now I know otherwise. I'm also not going to post the pictures of me on the horse. :)
I will post more pictures over the next few days of the party and various others of Kari sporting her hats. She is adorable in them! She is excited about the rest of her hair falling out so that she can tie Pappy, Daddy, and Uncle Chris down to shave their heads. She is adapting well to all the changes she's going through and I'm so proud of her!!!
I started this blog to document the story of my kids as they grow up. However...July 8, 2011 changed that slightly when Kari was diagnosed with Acute Lymphoblastic Leukemia (ALL) . We invite you to share our journey as we walk through it with the Lord's help!