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KetrenW@TLCcares.org
Friday, January 6, 2012
Update
Hello friends and family, it's been a while since I've updated, we've had lots going on here but I will bring you up to date....
Upon arriving home after my 19 day hospital stay, we were thrust right into Christmas, it was hectic but glorious! Mom had a months work of stuff to fit into 1 week, but somehow it all came together. We were blessed by many, many people this holiday season with their giving and holiday spirit. I got a train table, some new trains, trucks, cars, clothes, a tool table and some Mickey movies, thank you Santa and everyone that gave to our family.
Post holiday season did not fare so well, my cousin, Presley, was born on December 27 and had lots of obstacles to overcome health wise. She was transported to Egleston that week and began her treatment there. This was a very difficult time for our family, and there were lots of prayers said. Sadly, on January 3rd, Jesus called baby Presley home, she is perfect now in mind and body and a beautiful angel watching over us all. Thank you to those that have prayed and continue to pray for our family's healing.
During the last week in December, I started long-term maintenance, hallelujah! I now have lots of at home medications to take and I will only be going once a month for clinic visits. I will continue this phase of treatment for the next 3 years....still a long way to go but I've come so far.
Not too much else to update, my sisters are back in school and we have been trying to get back on track. Here's wishing 2012 has more blessings than heartaches and that you and yours have a great years. Update again soon.
In love,
Ketren
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KetrenW@TLCcares.org
Monday, December 19, 2011
I realize it's been 6 days since I've updated, so here goes:
Well last Wed was much of the same, fevers, cultures, meds, I was even tested for a parasite. Still vomiting, still diarrhea, still lethargic and no appetite, I wouldn't even drink the shakes from the nutritionist. It was even mentioned that I might have to get IV nutrients if I didn't start eating, they weren't going to risk me losing any more weight!
Each visit from the doctors assured my mom that it was just a waiting game and eventually my counts would come up, I had been on a hormone to help that happen for several days with no results thus far.
Thursday I had my chest x-rayed again because of my cough and once again, pneumonia was ruled out. Friday I had a CT scan with contrast to check for a fungal infection in my abdomen, chest, head and it rendered negative results....no flipping answers.
My regular doctor did come by Thursday night after reviewing all the tests and said that I just had a real nasty sinus infection that wouldn't go away because I had no immune system. He said they would adjust me to a more effective antibiotic and hope for good results. The vomiting and diarrhea is just a result of the constant mucus my body is producing because of this infection, my mom never has a barf bag out of arms reach.
By Friday, my ANC finally jumped to 190, hallelujah, I still ran a low grade fever that night but my mom just KNEW it was a sign that I was going to get better. By Saturday, my ANC jumped to 600! Although it's a great sign, it does cause me lots of pain in my bones from the marrow reproducing, my nurses were great about keeping the pain meds in my system...when I wouldn't throw them up. They also finally changed my anti-nausea medicine to one that was stronger so my vomiting did become less frequent.
Saturday night, no fever! We knew that if I went 48 hours without one and my ANC was up, I would be able to go home, fingers crossed.
ANC report Sunday morning - 1520! I was on my way :) When the doctors visited that morning they told my mom that since it had been since Friday night that I ran a fever, they would do a conditional discharge for THAT DAY if I ran no fever by 3pm, HALLELUJAH!
Well my daddy jumped up so fast and ran out the door to go get the house ready (mommy thought this was funny) and he would be back at 3 to pick us up....all afternoon my mom was on pins and needles...guess what...no fever :)
3:00pm on Dec 18......after 19 days in the hospital, I was discharged. My mom was giddy with excitement as was my dad and sisters, home had never looked better.
So now today me and mom are just chillin, we both are still really tired from that long stay but we'll use today to catch up on some rest before mom crams all her Christmas errands into one week (glad it's her and not me!) :)
I can say that my appetite is back, I will be starting antibiotics this afternoon and hoping to continue to get better. I have a clinic appt next with with a sedation and chemos that will have me starting long term maintenance including steroids by the first of the year, God is good.
Thank you everyone that has helped us out, we are truly blessed with great friends and families. We appreciate the visits, prayers, meals and all other generous acts everyone has helped with, thank you thank you, thank you.
Have a very Merry Christmas!
Love,
Ketren
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KetrenW@TLCcares.org
Tuesday, December 13, 2011
Hello friends and family, time for an update...
Last time I checked in was Friday, I had started running a fever that morning which prevented me from being released and more cultures were ordered. My ANC was still in the gutter, so I would not have been going home anyway, sigh.
Friday night my dad and Karli Rae came up to spend the weekend with me, what wonders that did for me and mommys spirits! We didn't really have much to do except watch movies, do some arts & crafts and hang out together...but it was glorious! I sure miss being home with my family. My counts didn't really head north at all over the weekend and my fever remained so I was put on several different medications including new antibiotics and an anti-fungal medicine. Sunday night came way too fast and it was time to say goodbye to daddy and Karli for a few days since they had to get ready for the school/work week.
Monday rolled around and there were no fevers, I was still on several medications as well as doing 2 respiratory inhalers twice a day, they have also added a cool wet mist to my room to help my cough. I haven't really eaten anything, and when I do I either throw it up or explode it out my rear...I think I've even managed to scare a couple of the nurses with my blow-outs!
I've had some wonderful visitors over the last several days and I truly appreciate you all taking the time to come see me! I was in isolation yesterday pending the results of a parvo test that came back negative today as well as all my other cultures that have come back negative too...it's truly a mystery as to what is wrong with me. My mommy says she feels like she's in a bad episode of the Twilight Zone living 8 months ago when she was seeking answers for my limp...we're hoping the doctors can find something that is causing me to feel so bad.
So today is Tuesday and this morning I was still fever free, I had spent lots of time resting yesterday and spent a great deal of time resting today. I was doing so well the doctors had even decided to take me off of one of my antibiotics and were planning on taking me off the antifungal tomorrow. Keep in mind, however, my counts over the last few days have been 10, 0, 10, 20 so we are still waiting on those numbers to rise. The ideal number would be for them to get to 100 and show a consistent northward trend, that has yet to happen.
Well, just when I think things were going better, I had a fever again tonight, crap. More cultures, more medications, and more hospital time. I've even been put on prilosec for my stomach since I have been vomitting and having diarrhea so much, I'm not sure where it's coming from since I haven't eaten a solid meal since I don't know when. So here we are, back to square 1. We will wait on these cultures to come back and see what the doctors say tomorrow about a new game plan.
Thank you to EVERYONE that has prayed, visited, cooked or done ANYTHING that has helped my family these last 2 weeks....you ALL are greatly appreciated more than you know.
Please continue the thoughts and prayers, they are both needed and appreciated. I will keep you all posted.
Much love,
Ketren
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KetrenW@TLCcares.org
Friday, December 9, 2011
Hello friends and family, hope you all are doing well and let me start by saying THANK YOU THANK YOU THANK YOU to everyone that has helped my family in any way; be it food, transportation, childcare or a visit, you are GREATLY APPRECIATED.
Now onto what's going on with me...last night during my doctors rounds he told me he felt confident that tomorrow (this morning, Friday) would be the "magic" day...my numbers would be up and I'd go home. Mommy tried not to get too excited but she sure was hopeful. Well, at around 7am this morning, my nurse told my mommy that I was running a fever, 38.1 and had been for an hour, FYI, that's AUTOMATICALLY an additional 48 hour stay and more blood cultures, mommy was not happy. BUT, on the bright side, it's much better for the fever to have happened here than once we got home, so for that, my mom was thankful...oh, and not to mention that my ANC count was still 20, the EXACT same as it was yesterday even though I have been on the hormone to help raise my counts for 2 days...it seems we are chasing our tail.
So today I really didn't feel well, I laid around and slept in the bed until almost 2:00 and didn't really feel like eating or drinking, my mommy said I had flushed cheeks and just looked like I didn't feel well...I know this has been super hard on her :( Around 3:30 I had some visitors, Jodie & Don who were our Lighthouse host family and I brightened up immediately, they brought me memory cards to play with, a cute christmas pet and some playdough as well as some gifts for Karli, it was a nice visit. I also had a great visit yesterday from Pastor Roger from our church as well as our friend Robin LaGrow and her friend....it sure makes my day when people go out of their way to come see me! I even enjoyed a visit from my friend Jaydn this week along with his mom Leigh and her mom Pat and they brought me a super duper cool pet, he even showed me his awesome cartwheels...I sure hope I can move like that one day :)
After Jodie and Don left, I was tired again and wanted mommy to lay down with me and watch Finding Nemo (shocker), I was asleep almost immediately. My doctor did come by this afternoon and said he was changing my antibiotic and ordering an additional culture to tests for other infections that might be going on in my body, something is just not right. He did say that if I go all night without a fever (highly unlikely because it is creeping up at this moment) and my ANC rose to 200 by in the morning I could go home...well, if you've been following my counts these last 10 days this is about as likely as pigs flying over Scottish Rite tonight, but miracles do happen so I guess it could be possible....I ask you all to send God a "knee-mail" and ask for healing, me and mommy so need to be home with our family.
My daddy and Karli Rae are coming up tonight to stay the evening, I am looking forward to seeing them, maybe they can do the "no fever, high count" dance and help me get discharged tomorrow, we shall see.
Until then, please keep my other friends in your prayers, my friend Abby who is going through the same ANC roller coaster as me as well as little Millie who is in for chemo, Lindsay who is recovering from her transplant, Danielle that is in maintenance and hoping to continue problem free and for small Piper to get answers soon as well as any other of my friends I might have missed, you are all prayed for daily and I hope God will embrace you and your family and heal, heal, heal.
As always, thanks for checking in and for the continued thoughts and prayers, they are always appreciated. I will check in tomorrow and let you know how things are going!
With love,
Ketren
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KetrenW@TLCcares.org
Thursday, December 8, 2011
Hello friends and family, not much to report...I was taken off isolation this morning, my stool test for a virus was negative...thank goodness. I still have my cough and runny nose and I am still receiving respiratory therapy twice a day as well as antibiotics. My counts yesterday had jumped to 60, but just found out they are back down to 20 :( I will start a hormone medication tonight in hopes to stimulate my white blood cells to help raise those counts, I have my fingers crossed (so does mommy).
I do want to take a minute and thank everyone that has been so kind to take meals to our at home family while me and mommy are here, it's been one less thing for my mommy to stress about. I also want to thank everyone that has made the trip up to visit me, your time means so much and just brightens my day more than you can imagine. I really enjoyed having my Mourie here last night, she's so silly and makes me smile :) My sissy Lexi is up here again tonight and made it in time for us to go to a great arts & crafts holiday party at "The Zone" downstairs where we made marshmallow snowmen and spin art, I must admit it was fun and a nice break away from the hospital room!
So now more waiting.....I will update again soon with any changes, but until then....we always appreciate your thoughts and prayers!
Love,
Ketren
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KetrenW@TLCcares.org
Monday, December 5, 2011
Hello friends, not too much has happened here, counts are still down, I still have a cough and a runny nose and I am still on an antibiotic IV drip. According to the doctor today, it might be Thur or Fri before I get home barring any further complications, keep your fingers crossed!
We did have several visitors yesterday which always brightens my face. My moms friend Lynn Deyton showed up and brought me the cutest frog blanket along with a Mickey snow globe that you just wind up to see the snow...you don't even have to shake it! She even brought my mommy a small 4-pack of her favorite Pinot Grigio wine...this sure made mommy smile! Then the Coryells from our church came by, they brought me the coolest light up necklace that is still hanging from my IV pole and they brought mommy lots of candy since she has been on a major candy kick since we've been here. Then Lisa Thomason and her son came to visit and brought me 2 pairs of long sleeve Cars pjs along with a cars ornament, some car stickers and even a gift for Karli, it was so nice to have so many people show me and my family how much they cared by stopping by and we thank you very much!
Today my sissy, mommy and I ventured out for breakfast in the cafeteria, it sure was a nice break. After that, we ventured to The Zone for a quick game of foosball (sp?). I was feeling a little more energetic and even continued to play games with my sister when we got back to our floor including driving around a cozy coupe and pushing a fake vacuum cleaner. My Big Daddy even stopped by for a quick visit and played blocks with me that my sissy had bought for me in the gift shop. Sissy then had to leave to go get Karli off the bus and mommy and I took a nice nap. Mommy was woken to a phone call from our friend Miranda that had been enroute to spend some time with Karli but had gotten into a car accident, everyone was fine thank goodness and we will look forward to spending time with her in the near future.
I know that lots of people have taken food to our family at home and it is very much appreciated...I assure you they are eating like kings compared to what we are eating here in the hospital! For all of those of you that have taken the time and or are planning on taking food, we thank you so much!
And finally, today was my DADDYS birthday! I was sad that we didn't get to spend time with him but we have something really special planned for him when me and mommy get home...he told me on the phone tonight that all he wanted from me for his birthday was for me to get better and get home, I'm sure gonna try :)
Well that's about it, I'm going to watch Finding Nemo for the 1054034 time with my mom and curl up in the bed to snuggle. Thanks as always for checking in and for the continued prayers and thoughts, they are greatly appreciated.
Love,
Ketren
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