Very nice to read that. Hope all continues to improve!

Awesome news!!!!!

Nikki is out of ICU and back at 9B. Her billirubin continues to improve with the new medication. Nikki is so tired though, who wouldn't be! As Karen put it, "Nikki went to hell and back'! But she continues to fight! Karen posted new pictures up of Nikki. ANC numbers are going up fast, but she still needs paletes. God is hearing our prayers! Please continue to pray!!

Karen's latest update!!

Poor Nikki doesn't have much energy yet and fell asleep before the fireworks last night. Thats okay, there will always be next years for her to watch. I watched a few but it is no fun watching without friends and family. Nikki continues to do well and amaze her doctors. I am so proud of her. She has been to hell and back and the new pictures show how tired she is. The amazing thing is that she still finds the strength to smile. Of course, I did not want to post the rest of the pictures that I took in the PICU. I will just save them for the day when Nikki is way older and can look back and be proud of herself just like we all are. They are not easy to look at. Well, today Nikki's bloodwork continues to be better and this includes her billirubin that came down slightly. The hard thing is that she continues to need platelets and blood atleast daily. Since this admission, Nikki has had blood products hung over 50 times already. This is just times hung and not the number of units which would be more. We are finally starting to stop the antibiotics since there are no fevers and no infections. The liver ultrasound results state that it is unchanged from the last one which means the VOD is not getting any worse right now. We still have issues to work on but I am praying that we are on the last lap of this admission. I have a list of questions for Tammy and Dr Goyal to help me with tomorrow. My prayers tonight will focus on Nikki's belly pain, her fragile skin, and continued improvement to her bloodwork. As I struggle to keep my eyes open now, I will say goodnight. Praise God for the healing he has done and continues to do for Nikki. Goodnight my brave little soldier. Karen

So good to hear she is making progress,we will continue to pray,Thanks Ma B for the posts.........................

Greg got a text with the update Saturday while we were all in the pits between rounds. 5 racers had to walk away from each other because "they had something in their eyes" after hearing the good news that she was out of the PICU. What a fighter Nikki is.

Great news on the progress. Now I can clean the rust off my keyboard.

Day +24
Posted 9 hours ago
Nikki had a restful day. Dr Goyal made many changes today with her IV meds and to me they all show that she is improving. Her WBC and ANC are high enough now to stop her neupogen and we will now see what she is doing on her own. The billirubin number is down slightly and we will take it. She only needed platelets once today and no blood. A few new issues to monitor but nothing to get concerned about yet. My job now is to get Nikki moving again since she is alittle weak. All she wants to do is sleep. I told her it was either me or a physical therapist and she did well for me. One day at a time. We walked and played Wii bowling today and that was about all she could do. She is drinking but is still having belly pain. Still not eatting. Nikki still has a long road ahead of her, but tonight I just feel so thankful for how far we have already come. Many THANKS to all of you and God Bless! Karen

Forever "53'

Always and forever "Thinking of Nikki"...

Our "Guy"

This update is a little graphic, just to give you a heads up...

Karen just updated, and the news is still good, but the concern is moving to her gut now, and away from the lungs and liver. GVHD = Graft Versus Host Disease

Nikki is taking a nap now so I thought I would update early. She has been awake much more today. She beat me at a game of Yahtzee and then did some painting. I will have her take a walk later. Nikki's bloodwork numbers looked good today. No new concerns there. Dr Goyal's comment today was that the challenge has moved from her lungs and liver to her stomach/gut. So, the lungs are clear, and the billirubin level continues to drop. We are still doing meds for those things but must also look into her stomach pains and the amount of diarrhea that she is having now. She already had a confirmed GVHD of the skin with the biopsy and now they are thinking she has GVHD of the gut. So, we do everything to stop the diarrhea today and if it doesn't work then we need a scope and biopsy done. They already stopped meds that can cause a problem in that area. Next, I had to stop giving her anything to drink with sugar in it. Everything she was taking had sugar in it. I think the GI consult is already in, but lets try not to use it. So, tonight at 9pm if you could pray for Nikki's belly. To slow down her diarrhea and have no more blood in her stool. She already got platelets once today and they will check a level later and give more if necessary. They are also going to start her on an IV med to stop her itching. Her poor skin is a mess. The rash has browned and is peeling, and she is just so itchy that she is scratching and making herself bleed. Can't wait to get her into the tub tonight and lotion her up to help. I think that is all for today. As always, thank you for the prayers and support. Praise God for the answered prayers and Nikki's steady recovery. Karen

Still continuing to pray for Nikki...............................God Bless her and her family.............................

Thinking and praying for Nikki every day and every night.

Day +26 and too many vital signs needed.
Posted 12 hours ago
It has been a long day for Nikki and I. It was a day of extra IV meds that needed us to check her temp, heartrate, respirations, and bloodpressure frequently. It was for her IVIg, then Enbrel, then platelets, and now a run of magnesium. I will be checking bloodpressures until atleast 2am. Last night Nikki did spike a fever and it appears that she may do it again tonight. So, bloodcultures sent and the 2 antibiotics that we just stopped are back again. As I sat today in the room, I just looked at all the IV meds that get pumped into her body everyday and I am so ready for it to be over. Nikki is still having belly pain but I am very glad to say that the diarrhea has gotten so much better. They put a hold on going to the OR for the scopes today and I hope they do the same thing tomorrow. Her bloodwork looked good other than the fact that her billirubin level went up today. I just pray that tomorrow it goes back in the right direction. Her skin was better today than yesterday. I will keep looking forward to the main goal of getting home. It is just frustrating that some days it seems as if we take two steps forward and then one back. I am just tired tonight and tired of seeing Nikki have the belly pain. Tomorrow will be better! In God we trust, tomorrow will be better. Karen

God is walking beside Nikki! Keep praying!

To the top for this family PLEASE don't forget your prayers tonight for this poor child as well as others like her May god bless this family.

Nikki's carepage is down for maintenance. I will update as soon as the web page is back up!! Thanks so much!!!

She is in my prayers daily, and I will continue to do so..God Bless her..

Day +27
Posted 12 hours ago
Not quite sure where to begin. I guess the first thing is to thank my mom for bringing Ashley down today. The days are getting harder as we have been here so long and Nikki seems to be feeling worse. A visit from Ashley is always what I need. I wish Nikki was more up to the visit but she is still struggling with the belly pain. The pain actually got worse today and even though the diarrhea is not as bad as it was the doctors want to take her to the OR tomorrow for an upper and lower GI scope with biopsies. And, while she is there they will do a bone marrow biopsy since tomorrow is day +28 and when they usually do that test. They were planning to wait for the biopsy until she is more stable but since she is going to the OR they will get it done. Nikki is not eatting or doing much of anything because of the pain and nausea. This evening with an extra dose of her pain med she did play Yahtzee but then back to sleep. We tried to get her to do physical therapy today, but we had no luck. Her bloodwork is about the same as yesterday and she did get platelets. She did not get a fever last night but did get one this evening. I pray tonight to get Nikki safely through the tests tomorrow, for her comfort, for relief from the fevers, for answers to the belly pain, and for perfect bone marrow biopsy results. Please God... Amen. Karen


We keep Nikki in our prayers and pray for good results of her tests and to get rid of any pain she may have. Also give continued strength to the family.

Thanks Chad.
Nikki did go to the OR this morning and she is back in her room. We are all praying for Nikki to feel so much better with each passing minute! We just need more prayers!!

I pray every night for Nikki to feel better and also for strength for the Deniker family. It's so hard to see your child sick and in pain, especially for such a prolonged period of time.

quote:

Originally posted by KiMurdock62:
I pray every night for Nikki to feel better and also for strength for the Deniker family. It's so hard to see your child sick and in pain, especially for such a prolonged period of time.

That is so true!! My 19 year old daughter had major stomach surgery yesterday and for a parent nothing is so painful than to watch your child sick. She is ok and should be home in a week. Prayers are answered!!

quote:

Originally posted by KiMurdock62:
I pray every night for Nikki to feel better and also for strength for the Deniker family. It's so hard to see your child sick and in pain, especially for such a prolonged period of time.

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