Wednesday, January 16, 2008

The Greatest Miracles Come in the Smallest Packages

UPDATE AS OF 01/17/08:

Happy 4 month birthday Lilly! Mommy and Lilly were able to return home yesterday as scheduled! Praise God! They are both doing well, just pretty tired. The plan is for Lilly to go back to the hospital next Thursday where she will stay for 5 days for an intensive chemo treatment. Then if all goes well she will return home for a couple days, and then back for 5 more and another treatment. This is the next phase of her treatment called the consolidation phase.
There are a couple praises to share! The results from her bone marrow biopsy were in today. The Dr.s had told Lilly's mom that the preliminary report showed no cancer cells, but not to be surprised if they did find some trace when the full report came back- they said that was normal for a trace to remain. Well... praise God, the biopsy was 100% clear! The Dr.s were thrilled and said that was very good news, and that Lilly is responding very well to her chemo! There is probably a pretty good chance that Lilly will not need the bone marrow biopsy afterall, but we still need to pray that the Dr.s will make a wise decision based on what's best for her!
Also, when Lilly left the hospital on Wednesday, she was under 10 lbs. and the Dr.s were concerned about her weight loss. She won't take a bottle, and they were concerned that she wasn't getting enough calories through nursing. When Lilly's mom took her in this morning she had gained 3 ounces overnight! Please continue to pray that she would eat well and continue to gain weight, and that her rash on her bottom will clear up before her chemo next week. Please pray also that she will be safe and stay healthy when she is home- that the boys and everyone else would stay healthy too. Lilly still has a long way to go, but it's just so nice to see her smiling and healthy again. This picture above was just taken on Monday night, and she was such a happy, smily girl! One of Lilly's brothers told me today that she is smiling for him a lot! What a blessing. Pray that her body will be stronger for the chemo this time and that it won't make her as sick as before. Continue to pray for Lilly's mom and dad as well that they will continue to eat well and get rested! Pray for Grandma K. as she leaves on Saturday to return home, and for Lilly's daddy's dad, who is coming for a few weeks on Saturday. Lilly's mom and dad are very fortunate to have such a loving family to help them out at this time! This long road continues, but God's love extends further than we can imagine! He is faithful and he does hear our prayers! I know there area lot of prayers going up (especially today), and there are already praises to share! What a miracle. Thank you all for your faithfulness in prayer for this family.
Thank you SO much for your prayers!

News on Lilly

Hello friends, prayer warriors, those we don't even know. I spoke with a good friend of Lilly's family today to get an update. Tomorrow, our church will be having a day of prayer, focusing on Lilly and her family, so I wanted to get specific things to pray for. I hope that you will join us in prayer.

Lilly is losing and has lost weight, and weighed in at just under 10 pounds as she was released from the hospital today. She is four months old as of tomorrow (January 17), and her family is praying that she can gain weight before she goes back in for another chemo treatment next week. Her mom is concerned that she is not producing enough milk for Lilly, which is likely because she herself is not getting enough to eat, and enough rest. So please pray for strength and weight gain for Lilly and for her mommy.

Lilly still has a bad diaper rash, which has slowly been getting better as the white blood cell count has increased. She still has open sores though, so please pray for complete healing there as well. She really needs the diaper rash to go away before next week, when she will get her largest dose ever of chemo (Thursday, Jan. 24th). She will be in the hospital for 5 days, home for 2 days, and then back in for another 5 days for more chemo. Her hair will likely start falling out after the big dose on the 24th.

Lilly's mom and dad will be getting the final biopsy on the bone marrow tomorrow, January 17th. This will determine how clear the marrow is, and whether or not they will need to do a bone marrow transfer. They will also be finding out in the next few days whether or not one or both of Lilly's brothers are a match for bone marrow donation. Please pray that the biopsy comes back in a very positive manner, and that there will be no need for a transfer. If there is a need for the transfer, please pray that one of Lilly's brothers will be a match.

Please pray for Lilly's mommy and daddy to be in high spirits, to feel the comfort and peace that only God can give. Pray for them to have patience with and time for the boys. Pray for Lilly's mommy, who has not been taking good care of herself...not eating well, and not sleeping well.

Please pray for the boys and the rest of the family to stay healthy so that they can keep the germs at bay, to reduce the chance of additional infection.

Again, I want to thank you so much for your prayers, on behalf of Lilly and her family. God is faithful and He is sovereign. We pray that this will all be to His glory.

God bless,


Monday, January 14, 2008

A HUGE Praise for Baby Lilly--God is Faithful!!!

"Well... we prayed for a miracle, and that's exactly what we got! It was confirmed today that Lilly is in remission!!!! The cancer is gone in her blood, spinal fluid and bone marrow. Lilly's Mommy and Daddy went through one of the hardest weekends of their lives, but it wasn't all for nothing. God has revealed himself to them, and Lilly's Mommy knows in her heart that this is indeed a miracle: the result of the prayers of so many, and the grace of God. Needless to say, Mom, Dad, and Lilly are all doing much better now. Lilly's counts are all climbing, her sores are healing, and Mom's spirits are lifting. Right now it looks like Mom and Lilly may be able to go home as soon as Wednesday. Then they will begin the 2nd phase of her treatment which will most likely involve bi-weekly trips back to the hospital for chemo, but hopefully no hospital stays. The bone marrow transplant is still a possibility for the future, but they can now wait until she is 6 months old like they wanted to. Continue to pray for that, as well as her future health- she still has a very long road ahead of her! And pray for their journey at home- it will be a very scary time for Mom to leave the hospital with her and be without the constant monitoring.

I can't say enough wonderful things about all of you and the blessing you've been to them through your prayers and words of encouragement. Our church (Rolling Hill's Community Church in Danville), is having a day of prayer for Lilly on January 17th (which is also Lilly's 4 month birthday) and I would urge anyone who is willing to join with us- in person or in spirit. Thank you!"

Thanks to Rachel who has so faithfully kept us updated on Lilly's condition. Please don't stop praying everyone! Thank you ALL for your prayers!

Sunday, January 13, 2008

2 New Updates on Lilly

Saturday, January 12, 2008:

Lilly's Mom asked me to leave an update tonight. There was not much new information today, but they did find out that there is a VERY small chance that these 'blasts' they are finding in her blood may be caused by the bone marrow and not Leukemia. Apparently when the bone marrow is fighting or working hard it can put out some little blasts that look similar to the Leukemia. I'm sure I'm not explaining this correctly as I don't fully understand it myself, but what I'm trying to say is that there is a glimmer of hope that this could be a false alarm. Please pray extra hard that this may be the case. They will get a confirmation on Monday as to what is causing this!

Continue to pray for her Mommy and Daddy. Her Mom will probably be upset that I'm telling you this, but she really isn't holding up very well right now. She has lost a lot of weight, and is not sleeping or eating well. We really need to pray that she will have the emotional strength to take care of herself right now. The kids and their Daddy really need her to be strong! Pray especially that they will have hope. I know Mommy feels sometimes like she just can't do this anymore, and she's really losing hope in Lilly's recovery. It's very hard to remain strong and optimistic under the conditions and news that they've been dealing with. (I can't speak as much for Daddy because I'm not talking with him as much, but of course he really needs your prayers too). Lilly's Mommy actually came home from the hospital for the first time to sleep at home tonight, and her mom stayed at the hospital with Lilly. It has been 1 month now since this all began, and she hasn't had anything even near a good nights sleep. I think its wonderful that she was able to come home for a night, and hopefully a good night's sleep will refresh her a bit for the week ahead. She will head back first thing in the morning.

I haven't heard too much about how Lilly is doing today, but I know her WBC counts are still low, and she does have a horrible diaper rash right now with some open sores. Lilly's Mommy requested specific prayer that this would heal before they have to begin chemo again. It is the chemo that is burning her bottom, and also the sores are openings for infection to get in so they need to heal before she becomes even more susceptible. I think that's it for tonight. I will definitely write back when anything is confirmed. Continue to pray for the bone marrow testing as well- her biopsy is Monday and the boys are being tested tomorrow.

It warms my heart everytime I get on this website and see how many visitors are checking in! I remember how excited I was on day 2 to tell Lilly's Mommy that 35 people had checked in! It is amazing to me that over 100 people a day are checking in on Lilly now. Your love, prayers, and support mean more to them than anything. They do have internet access in their room now and she can check here often, so continue to leave comments in the guestbook. I know it really encourages them to read your notes!

Sunday, January 13, 2008:

I just wanted to leave another quick journal update that is on more of a positive note. While there isn't much new information, and her Leukemia is likely still back, I just wanted to pass on some good news. Lilly is doing really well today. She is off of the morphine, eating well, her color is good, and she's smiling! Lilly's Mommy's spirits are definitely lifted today. She really felt all of your prayers and is feeling hopeful and comforted again. Some of Lilly's labwork came back today and her WBC count, her nutrafill count, and one other one, have jumped up considerably (which is great!) The Dr's are baffled because if her Leukemia is back, this shouldn't be happening. I got chills when Lilly's Mommy told me that, because when the Dr's are baffled it means that God is busy doing something they don't understand! I love it! While there still may not be good news for them tomorrow, we know that God is in control and is working in her little body. I will be going to see here tonight and will try to get some pictures to post. Keep praying- it's working!
Happy Birthday to Lilly's Daddy!

Thanks for taking the time to read, and to pray.
God bless,

Friday, January 11, 2008

PLEASE Pray for Lilly This Weekend...URGENT!

Lilly's mom and dad received the devastating news tonight that Lilly's Leukemia has returned. She had been in remission now for a couple weeks with no cancer cells in her blood, but after a week without any chemo they have returned. This was absolutely their biggest fear, and Mom and Dad are both devastated. Also, they just found out yesterday from the bone marrow Dr. that the type of cancer Lilly has is one of the hardest kinds to treat, which isn't what they were previously told (apparently there's a big difference between infant ALL and childhood ALL). Needless to say, they are very discouraged and they all need your prayers right now more than ever. The bone marrow transfer is now going to happen for sure, and she will have her biopsy on Monday (she didn't have it today because her counts were too low). The boys will be tested on Sunday, so we really need to pray that one of them will be a match. They wanted to hold off on the transfer until Lilly was 6 months old so she would be bigger and stronger, but it doesn't look like they'll be able to wait now. Continue to pray for Lilly's cancer, but please lift Mom and Dad and the boys up as well. Their spirits are really low, and they need to feel the peace and comfort that only Jesus can give them right now. Thank you all for your diligent prayers. I will leave another update tomorrow as soon as I get more information.

Thursday, January 10, 2008

January 9th, 2008 Update on Lilly

Please continue to pray for Lilly! It is a possibility that she may be coming down with another infection. It looked like she was getting an infection around her chest tube today so they took cultures to have it tested, and tonight she came down with a low-grade fever. The fever has subsided for now, but please pray that this is not a serious infection and that she won't have to make another journey to the PICU! Other than that she is doing okay- she's thrown up a bit and been pretty fussy as a result of her treatment on Friday, but her mommy has been able to nurse her, so that is a praise. A couple days ago she even got a few of the really sweet smiles you've been praying for! Hopefully she will be seeing more of them soon.

Friday she will have another bone marrow biopsy which will help determine whether the transplant will be necessary or not. Her brothers are getting tested on Saturday to see if they are compatible donors, so be in prayer for that- that one of them will be a match for her, and that the experience won't be too scary for them (it's just a blood draw, but with all that is going on they may be a bit traumatized).

Continue to pray for her two brothers as well. They are REALLY missing their mom and crying out for her. Dad is back to work this week, so he's been able to be home with them in the evenings, but they've only seen Mom a handful of times in the last month. Continue to pray for Dad at work, and Mom alone in the hospital. I will try to keep you updated in the next day or two of any new developments.
Thanks again for all of your prayers. This family really can use them right now!
Have a blessed day and thanks for reading!

Monday, January 07, 2008

January 7, 2008 Update on Baby Lilly

Here is the most recent update for Lilly. Please know that all of your prayers are REALLY appreciated!!

Lilly is still recovering from her last chemo treatment on Friday. She is starting to throw up again, and her mouth sores have gotten so bad that she is bleeding in her mouth. Please continue to pray for her pain level. She is still on morphine which helps a bit to make her more comfortable, but we all want to see her awake and happy once again. She will be chemo and steroid free now for awhile, so pray that these side effects will subside soon. Also, continue to pray that her blood and cells would grow back cancer free!
Lilly's Daddy is returning to work this week, so please pray for him as well that he will be able to concentrate on his work, and stay safe on the job. Pray for Lilly's Mommy as she will be alone a lot more now. She would really like to go home soon- she misses her home and her boys, so keep that in your prayers as well.
In my attempt to keep you all updated, I know it always sounds like "pray for this", "pray for that", and sometimes I forget to mention the praises and thanks to our Lord that I should. It's sometimes hard to remember in the midst of all this that He is in control and He does hold her tiny body in His hands. He is healing her and bringing her through this, and we need to remember this even through her suffering. Stay strong baby Lilly! We are ALL praying for you!
Thank you and God bless,

Friday, January 04, 2008

Current Update on Lilly

Sorry I haven't updated in awhile. I have been pretty sick over the last few weeks and just have not had the energy to post.

Here is the most current update on Baby Lilly, as of today, January 4th, 2008:

Lilly had the last chemo of her induction phase today! They will now monitor her for a couple weeks to see if her cells will grow back cancer free. She has been keeping food down, so that's a big praise! They did reinsert the feeding tube because she is having a hard time eating because of her sores, and she is sleeping a lot from her medication, so now she will still get nourishment even when she can't wake to eat. The tube definitely bothers her, but it's probably the best thing right now.
They will probably make a decision next week on whether or not she will need a bone marrow transplant. Right now they are making it sound pretty likely- I think it's a pretty standard course of action based on the cancer she has, but because she has responded so well to the treatment they are reconsidering. Please pray that if it is in her best interest that it can be avoided, but if they choose to go ahead with it, continue to pray that one of her brothers will be a match for her. They did find out that the radiation associated with the transfer would not be as horrible as they were previously told, so that is good news. However, there will still be some risks and long term side effects , so be in prayer for that as well.
Again, thank you all for praying. Your prayers mean so much to their family, and we can definitely see them working! I believe that God is being glorified through all of this, and that he is pleased when He sees His children unite together for a common cause!

Thanks for your prayers. I know that Lilly and her family are in God's hands, and they would appreciate knowing that so many are praying for them.