This past Thursday we went to the clinic for them to take cultures from her lines to make sure she was still infection free. While we were there she also got the vincristine chemo medicine and we were told her next round of chemo would start on January 4th. We go back to the clinic on the 2nd for them to make sure her numbers are still good and we are ready for her 4th round of chemo.

I was a little surprised we would be able to go so long without returning for her next round. I wasn't expecting a whole week still before going back. We have been taking advantage of our time at home. Friday we went Bowling with our son (Ambrosia was there too, just no bowling for baby!) then we went to Toys R Us to hunt down a Ninja Turtle and found exactly one on the shelf. That was a good day. Then yesterday my parents came down and watched the kids so that Wes and I could go to a movie and then dinner by ourselves. That was some much needed time to ourselves and I'm grateful to my parents for coming down to babysit!

Tomorrow is New Years Eve and we will be heading to Frankfort to celebrate Christmas/New Years with my dad's side of the family. It's always a good time and I'm sure this time will be no different!

I called the hospital yesterday and talked to Dr. Cheerva about Ambrosia's continuous feeds. She gets feeds 24 hours a day through her NJ tube. A couple of times now I have gone in to check on her in her crib at night because her pump was beeping or she woke up. Her feeding line will be wrapped around her neck. She moves a lot in her sleep like her brother does. Her head can start at one end of the bed and end up at the other. I was a little concerned that one morning I might wake up to find that she had strangled herself in her sleep. Dr. Cheerva told me I could up her feeds a couple of mls per hour and take her off for four hours last night. Then today up her feeds 2 more mls and then tonight I could take her off for six hours. She said that was the best she could do until they can see her again. I will be sure to bring it up at her next clinic visit and admission to the hospital.

That is all the news I have for now. I hope the rest of this week goes as smooth as it did last week! It sure is nice to be home.

We had a wonderful Christmas! I hope everyone else had a wonderful one too. Braeden enjoyed opening his presents and helping his sister open hers too. After opening presents we went to IHOP for a late breakfast. Then we headed to Frankfort to visit with my grandmother, who hasn't been able to see Ambrosia since her diagnosis. Shortly after Ambrosia's diagnosis, my aunt was diagnosed with colon cancer and my grandmother has been taking care of her and her son ever since. Please keep all of them in your prayers as well!

We then left Frankfort and headed to Lexington to my other grandparents house for Christmas lunch and then present opening. We got to visit with my grandparents, aunt and uncle, my brother and his kids (minus the youngest who was with her mom celebrating), and my parents. We had good food and then presents were opened. My mom's cousin and his family along with my great aunt also came by to visit for a little bit. A good time was had by all and we are so thankful we were able to celebrate Christmas outside of the hospital.

Today, I took some video of Braeden and Ambrosia playing and thought I would share. One of the videos is of Braeden and an award he got in the mail today from the SuperSibs group. The SuperSibs group is for siblings of children with cancer.

We made it home today! Right around lunch time we were able to leave the hospital. I have just a few minutes to sit down and write a quick update.

We got home, ate some lunch and played. I've also straightened the house just so it can be in shambles after opening gifts tomorrow! (I can't be the only one who doesn't want a messy house in the background of Christmas morning pictures!) We've had a home health delivery of items I was almost out of to help take care of Ambrosia. From here on out today, I plan to relax and enjoy the rest of the day with Braeden and Ambrosia. Once I get them to bed it will be time to put out the Santa gifts and stockings. Then tomorrow will be loads of fun watching them both open presents. After the morning here we will be heading to Lexington to spend time with family and open more presents. Looking forward to family time.

Then on the 27th, we have an appointment to go to the clinic and have them draw from Ambrosia's lines to make sure there still isn't an infection. Once there they will let us know when we have to come back for our 4th round of chemo. It was mentioned in passing that it wouldn't be until next week, but we'll see what they say on Thursday.

That is basically all the updates I have for now. I wish everyone out there a very Merry Christmas and Happy Holidays! Enjoy time spent with your families!

I don't really have a lot to update about Ambrosia. She is still getting her antibiotics for her infection every 6 hours. She's doing just fine and being her normal playful self!

I thought I would post about the generosity of others we've received since her initial diagnosis and our subsequent hospital stays. After our initial diagnosis, family and friends were more than willing to help us in any way they could. A lot of people have made monetary donations to help us stay current on bills, which has been extremely helpful. I was already unemployed when Ambrosia was diagnosed, but the discovery of her cancer made it impossible for me to be able to work. Taking care of her has become my job.

Every Thursday in the hospital, a cart full of toys is brought around for the patients to pick one from. Ambrosia has received a couple of toys this way. Beyond that this month we have gotten several deliveries of toys from various groups and volunteers. There have been police officers, listeners of a radio station WAMZ, UofL Athletes, the Isaiah Alonso Foundation, The Lily Grace Project, and some from people who haven't been identified. These donations are so welcome and nice to receive. Ambrosia is usually so intrigued by everything even at such a young age.

To those who have donated their time and money we truly appreciate everything that has been and is being done for us. It definitely helps brighten our days to know there are so many kindhearted people out there in the world. I hope to return the favor when all of our treatments are complete and give back to the families here at Kosair's.

I put Ambrosia in a Christmas dress this morning still wishing I could find a bow to go with her Christmas dresses. I went to leave the room for a minute and when I opened our door there was a bow from The Lily Grace Project. It was Christmas themed and matched Ambrosia's dress perfectly. We have previously received a bow from this wonderful mom during a stay in the PICU. She makes bows in memory of her daughter Lily Grace who was born with a congenital heart defect and delivers them to little girls in the NICU and PICU here at Kosair's. I linked her blog above and she also has a Facebook page called "Never Forget Lily Grace". Please visit both sites to learn about Lily's story and also what her mom is doing in memory of her.

Yesterday the Infectious disease doctor team came to see Ambrosia. Before that a resident came and asked about her history. They were going to determine what kind of antibiotic she could be put on that I could administer at home. They of course came as I had to leave to get Braeden so I didn't actually get to talk to the whole team. After getting back with Braeden the nurse started Ambrosia on the antibiotic they decided to put her on. I began to nurse her and after awhile I noticed the top of her head was really red. This is how her reaction started with the other antibiotic.

I went and got her nurse and showed her how red her head was and then we lifted her gown and started to see red spots on her back and tummy. She went to talk to the resident who told her to give her a dose of Benadryl and she would be in to look at her. The resident came to look at her and by that point more red spots appeared on her back and tummy so we were sure she was having a reaction to the antibiotics they were going to send us home with. I knew then that this probably would put a damper in us being able to go home today.

Dr. Ayannar came and saw Ambrosia just a little while ago. She said because she had a reaction to the other antibiotic they will have to keep her on the one they had been giving. It has to be administered every 6 hours and that's not something they will let me do at home as it has to be given slowly over 1 1/2 hours through a syringe pump. She has to have several more doses and that puts us in the hospital until Christmas Eve.

Needless to say this has been upsetting for me. I have already decided I will have to leave earlier than usual today so I can go home and finish wrapping presents so that worry will be eliminated. We should definitely be going home on Christmas Eve as her numbers are good and hopefully there won't be any other issues. What upsets me now is that her chemo was being held back until after Christmas. I hadn't got an exact date yet but it seems as if we will be home for a day or two and then right back in for 6 days. I was hoping for a few days break.

As upsetting as it is, I have to remember this is all being done to keep Ambrosia as healthy as possible. It's easy to forget that at times ever so briefly but I usually snap out of it pretty quick. Can't say I don't feel the love here in the hospital as there is no shortage of volunteer babysitters at the nurses station for her if I need to leave and even just now another gift was dropped off to our room. That makes things a little easier sometimes....

She's been enjoying the small echo that is in our room by making really loud sounds to hear herself. She stops for a second when her SnugaMonkey starts playing cricket noises.

We are still in the hospital as they continue to give Ambrosia antibiotics to fight off the infection they found. I haven't heard yet exactly what kind of infection it is. Hopefully I will be able to see the doctor today as yesterday I missed her. Ambrosia had her NJ tube replaced yesterday. They took her down to the live x-ray called a fluoroscopy. This way they could see in real time if her tube placement was where they want it. They got it in and as they were taping it down on her face she kind of wiggled and the technician double checked and saw the tube had moved a little out of place. They decided to leave it and see if it would move on it's own and they would send an x-ray to her room later to check it.

After a couple of hours, they came to take an x-ray. While we waited for them to tell us whether or not the tube was in the right place, Ambrosia got sick and vomited. I knew that if it still wasn't in the right place it really wasn't in the right place now. Sure enough they told us it wasn't where they wanted it to be. So we had to go back down for placement. This time the technician said she got it way in there so hopefully there wouldn't be any issues.

They started her feeds back up right away and shortly after Ambrosia was vomiting again. They decided to slow her feeds down and gradually bring her back up to see if that would help her nausea. It seemed to help until this morning when she vomited again. I had the nurse give her a dose of Zofran and told her it really helps if she's on a scheduled dose of Zofran to help with her nausea. So hopefully she will have no more issues with vomiting being on a scheduled dose.

This morning she will be getting a blood transfusion as her hemoglobin levels were low. Her platelet count was still good though. Yesterday we had visitors from the police department deliver a present. There was also someone dressed up as a polar bear with them. Ambrosia made her cooing noises at them and seemed to wave her hand as well. Sunday, Santa also visited Ambrosia while I was gone to get Braeden. There are so many wonderful people that try to brighten the patients day up here while the holidays are going on. It's nice to see.

Braeden told me yesterday after I picked him up from school that it was only 8 days until Christmas. He seemed pretty excited and I asked him what he thought Santa was going to bring him. He said, "Well he's not going to bring me a pocket knife." I told him he was right about that! I asked who was getting a pocket knife and he said his friend Sam was but it would be a kid one. Later we were watching Cars 2 and Braeden asked if he could say Daggum! like Mater does in the movie. I just laughed and told him yes. He says the silliest things sometimes!

I still don't know exactly when we will be out of the hospital. It all depends on when they get a negative culture from her blood. Let's hope that is only a day or two away! I still have presents to get wrapped!

*Since writing the original entry I have seen the doctor. The kind of infection she has is a strep infection. They are supposed to be getting with the infectious disease doctor team to see if there is an antibiotic we can go home with to treat it as Ambrosia's ANC numbers are up. This means we may be able to go home tomorrow!

We made it a whole week this time before having to return to the hospital!

Thursday, Ambrosia had her 4th clinic visit. She got her vincristine chemo medicine and they also checked her numbers. It turned out her platelets had dropped from over 100 on Tuesday all the way down to 27 on Thursday. That meant we were going to have to go check in at the hospital for them to give her a platelet transfusion. It took a couple of hours after we registered and then getting the transfusion before we could go home. Everything else had still been going fine and we were due to come back to the hospital on Saturday for them to check her numbers again and make sure she didn't need another transfusion as the clinic is not open on Saturday.

So at 8 am on Saturday we arrived at the hospital for them to check her numbers again. Unfortunately her platelets were still in the 20s and her hemoglobin had also dropped. That meant she would have to get a platelet and a blood transfusion. They got us settled in a room and once her platelets arrived, started her transfusion. Right after her platelet transfusion they started her blood one. They check her vitals about every 15 minutes after starting a transfusion to make sure she isn't having a reaction. After starting the blood, the nurse took her vitals and she was running a fever. This meant they had to stop the blood transfusion and get blood cultures from both of her lines to make sure she wasn't harboring an infection. It takes several hours before they know if any bacteria starts growing and they were going to call us if some did. She was given Tylenol to help bring her fever down and the doctor was called.

Dr. Cheerva came and looked at her and gave her the all clear to start her blood transfusion back up. We ended up being at the hospital 10.5 hours yesterday. They did let us come home. After being home for about 3.5 hours, I went to pick Ambrosia up and noticed she was burning up with fever. I had to call the hospital and talk to Dr. Cheerva and let her know what was going on. All the while I started to pack as I was anticipating having to come back in. Dr. Cheerva said since they gave her some antibiotics while I was in with her earlier in the day, she would allow for one fever at home. She had me give her Tylenol again and if she spiked another fever we would have to come in.

After giving her Tylenol, Ambrosia began to have issues with vomiting. Doing so twice after talking to Dr. Cheerva. I was able to give her some anti-nausea medicine and she began to settle down and her fever was going away. While watching a show with Wes, my phone rang and it was the hospital. They had gotten a call from the lab saying that there in fact was bacteria growth from the blood cultures they had taken earlier. This meant Ambrosia had an infection and they needed us to come in so they could start antibiotics.

Luckily, I had already started packing a bag earlier and was able to finish getting stuff together pretty quickly. Then Ambrosia and I headed to the hospital. They got us settled in a room and started her on antibiotics. Awhile after starting her antibiotics, she woke up and I went to get her out of the bed. She was shaking and burning up with fever again. She also vomited again. I went and got the nurse who noticed her head was really red and her hands looked gray and were cold. She talked to Dr. Cheerva and she agreed with her that Ambrosia was having a reaction to the antibiotics they were giving her. She gave her Tylenol and Benadryl and everything went back to normal. Now everytime she has to have this antibiotic she will have to have Tylenol and Benadryl a half an hour before hand.

While they were assessing her after giving her the Tylenol and Benadryl, her NJ feeding tube came out. We think it was dislodged because of her vomiting and worked its way out. This morning we are waiting to see if the radiologist who is here can do the kind of x-ray needed to put her NJ tube back in. They take a constant x-ray to make sure the NJ tube is going where they want it to, which is in a part of her intestines.

I don't know how long our stay is going to be this time. She will need to go 24 hours without fever I believe before they let us go. So hopefully it will only be a couple of days and then we can go home. Dr. Cheerva has agreed to allow us to wait until after Christmas to start her 4th round of chemo. This is good news as I was hoping to be able to celebrate Christmas at home.

We've had a busy couple of days but hopefully things will settle down now!

Ambrosia had her 3rd clinic visit today. They were pretty much just checking her numbers to determine if she had dropped enough for them to start her neupogen shots back up again. Her numbers are still good so we don't need to start shots just yet. We will be going back to the clinic on Thursday for her to get a chemo medicine called vincristine that just goes into her line. They will recheck her numbers on Thursday to determine whether or not she will need to start her neupogen shots then.

I asked when her next round of chemo would be and the nurse practioner said it is two weeks from when the last round started. That would make her next round start on December 20th. This puts us in the hospital on Christmas. Depending on what time they actually start the chemo on the 20th, we may make it home in the afternoon on Christmas. Unfortunately I don't see how they can change the schedule around too much as they don't want to allow the tumor any chance of growing by delaying the chemo. I may ask on Thursday about it just out of curiosity, but I don't know if we would be able to start a day sooner or delay it at all. We will see!

Ambrosia is doing well so far still at home. We haven't had any issues. No vomitting this time around as I am pretty vigilant about giving her the Zofran medicine she has prescribed for nausea. I have alarms on my phone set to go off when all medicine is supposed to be given so I don't forget! She also really loves the dogs and goes a little crazy when she sees them. I don't think she ever really paid much attention to them before but now that she does she thinks they are pretty great!

We appreciate everyone's continued support and prayers!