We made it home yesterday around 3 pm. We would have made it home sooner but Ambrosia started to have some issues with vomiting early yesterday morning, so Dr. Ayannar wanted to make sure she was okay before we went home. We got everything under control and were able to leave with no more issues. I went to fill her prescriptions and ended up having to call back to the hospital as one of the prescriptions none of the stores had and they informed me it wasn't covered by Passport. So the nurse practitioner called and talked to the pharmacist and was able to get something else that worked and they had in stock. This is not the first time I've run into issues of them not having a prescription in stock which is slightly frustrating especially if it's a medication she needs that day and it can't wait.

We had a clinic visit today. They took blood to check her counts and she was also due for her Vincristine chemo medicine. Her counts hadn't really dropped any since yesterday. They then decided to take more blood to check her potassium and phosphorus levels as they had gotten out of whack from this round of chemo. I won't know if there is any issues with that until they call me with the results.

We are now back at home and she is taking a nap which is what mommy should also be doing! We go back to the clinic on Monday for counts check only and then back Thursday for more of the Vincristine chemo medicine. Tomorrow home health will be out to change her dressing on her Broviac line. We should also be getting a delivery of her neupogen shots tonight to start.

That is all the updates I have for now.

Ambrosia's last chemo medicine will finish around 4:30 this afternoon. Unfortunately we will not be able to leave as soon as it is finished. She has to have 8 hours of fluids after the chemo is finished to make sure the chemo is flushed out of her system. So we are here through tonight and should be released tomorrow morning sometime.

Ambrosia is still doing good and acting like her normal self. After tomorrow we will have to go to the clinic on Thursday to get the Vincristine chemo medicine, which I've mentioned before is like a maintenance chemo medicine. It keeps the tumors from growing in between rounds of chemo. With this new protocol she will get the Vincristine every week.

I'm glad to be heading home tomorrow and hope there are no incidents that bring us back sooner than we have to be. Here is a video of Ambrosia playing while getting chemo yesterday.

We got to the hospital around 7:30 Friday morning and got registered. They had two rooms to pick from and one was the first room we were ever in on 7West, so I picked it. We got settled in and had to wait for some of the test results from Thursday to be sent over before they could start chemo. One of the nurse practitioners came in and looked at Ambrosia. She said they were going to try a new medicine that they normally could only give to the older patients to help with nausea. They had only just started being able to get it in liquid form and Ambrosia would be the first to try it because the new medicine she would be getting is particularly harsh with nausea.

They finally got started with the new medicine around 4 pm. Everything seemed to go well and we haven't had any major issues. She did throw up a small amount Saturday and I had the nurse get her some benadryl to help combat any nausea she had. We should be here until Tuesday as she should finish her chemo sometime during the night Monday.

Today she has gotten a blood transfusion as her hemoglobin level was only 7.6. Her electrolytes were also not balanced so they have put an additive in her feeds to help balance her back out. They said with the new chemo medicine they were expecting that to happen.

So far everything is going smoothly and hopefully will continue that way!

We saw Dr. Cheerva today at the clinic who went over her CT scan results with us. The tumor on her liver is definitely smaller than the last scan. There are no tumors on her spleen, the only reason it was noted on the results was because the contrast made it react some. Her right lung is relatively clear of all tumors. Her left lung however has some tumors that have gone away, one tumor has gotten bigger, and there are new tumors. Dr. Cheerva said the new tumors could have been there all along but were hard to see because of the fluid she had in her lung. She doesn't want to assume that is the case and is treating them like they are definitely new growths.

She said on Tuesday she met with the tumor board. They discussed Ambrosia and her type of tumor and were trying to come up with the next plan of action. After looking at different protocols for treatments for her kind of tumor, they have decided to try a different chemo medicine that she has not gotten previously. This protocol is generally used to treat this rhabdoid tumor when it occurs in the brain. The new chemo medicine is slightly more aggressive than what she has been given already. In addition to the one new medicine, the other medicines that she has already been given will be given at a higher dosage. With these treatments we will be in the hospital 5 days for one cycle and 4 days for the other cycle.

Dr. Cheerva is expecting us to be on this new treatment protocol for at least 6 weeks. They will continue to do CT scans in between treatments to check the progress of the tumors. We will begin this new regimen tomorrow. Because we are starting tomorrow, Ambrosia had to have a GFR scan of her kidneys to see how they were functioning, an EKG and heart echo, and a hearing test this afternoon. Luckily everybody was running on time and we were able to get to each respective appointment with no hiccups! The only one I know the results of is her hearing test, which is still perfect. Dr. Cheerva mentioned this new medicine can affect the hearing even more than the previous medicines have so they will be monitoring that closely.  She also said there can be more neurological effects from this medicine, such as eye drooping and not being able to grasp as well with her fingers. They will be monitoring that closely as well.

Dr. Cheerva said she is extremely hesitant about surgery with Ambrosia as far as the wait time with recovery from surgery to when they could do chemo again. She doesn't want to give the tumors any chance to reappear and grow in between those times. She is hoping this new protocol will get rid of all tumors so there will be no need for surgery and we can skip ahead to the high dose of chemo that will require the transplant of her already collected stem cells. She of course said we will reevaluate as we go and if surgery is necessary then it will happen.

Please continue to keep Ambrosia in your thoughts and prayers. This is one speed bump we are going to get over and will be on our way to a full recovery!

Yesterday home health came out to the house to get a CBC count on Ambrosia. There was one nurse in the clinic office, even though they weren't open, who was going to receive the results of her counts. On my way to Frankfort yesterday afternoon to visit my parents and grandmother, the nurse from the clinic called with her CBC results. Her hemoglobin was still fine but her platelets had dropped down to 29. Because of that she wanted us to come in to the clinic today for them to do another count instead of waiting until Wednesday. She anticipated she would need a platelet transfusion.

During dinner, the pediatrician that takes care of Braeden and had been taking care of Ambrosia before her diagnosis called. He has been following along with Ambrosia's care in the computer and has called after CT's and other tests before to check in with us. He wants us to know they are all thinking of her and following her progression. He asked if anyone had called about her CT results yet and I said no. He proceeded to tell me what the radiologists report read. It said that the tumor on her liver appears to have shrunk some more since her last scan, but it was hard to tell for sure. At best it's not gotten bigger than the last scan. There is a spot on her lungs that has gotten bigger. The report also mentioned a spot on the spleen. He said he of course is not in charge of her care and that we knew we were up against an aggressive tumor from the start. He saw Ambrosia last Thursday when I took Braeden in to the doctor and was amazed at how well she looked and is doing and said we have to take that in to consideration with her care.

Today, we went to the clinic so they could do another count on her. Her hemoglobin level was still good and her platelets had actually increased to 65. So we didn't need any transfusions today. We saw a nurse practitioner that we hadn't met yet, who went over the CT scan results. She said much the same as the pediatrician had told me the day before. The report says the spot on the spleen could be from the contrast they put in her, but it could also indicate tumors. The spot on the liver is smaller if not the same as it was since November and there is a spot on the lungs that has increased in size. She went to call Dr. Cheerva about the CT scan to see what we needed to do next.

She came back a few minutes later to say that Dr. Cheerva was at that moment meeting with the tumor board about Ambrosia. They were figuring out what the next move is going to be, whether that is surgery or more chemo. We are going back to the clinic on Thursday for more counts and to meet with Dr. Cheerva who should be able to tell us the next plans for her care.

As of right now I am determined to continue to take this one day at a time and focus on Ambrosia's well being and care from one day to the next.

Monday we went to the clinic for them to check Ambrosia's numbers. She didn't need to have any blood or platelets that day but her numbers were down enough that they ordered for her to continue her neupogen shots past Tuesday.

Wednesday we went back to the clinic for them to check her numbers again. This time she needed platelets. So we headed over to OMO for them to transfuse platelets. Luckily platelets don't take as long as blood to transfuse.

Today we went back to clinic for them to check numbers to decide when we will be going back in for our next chemo admit. She was going back up finally in numbers but I still have to give her shots tonight and tomorrow. Monday home health will be coming out to get a CBC on her to check her numbers and then Wednesday we will go back in the clinic for preadmit counts and most likely be admitted that day to start chemo round number 5.

The clinic had set up for Ambrosia to have a CT scan today of her chest and abdomen to assess how the tumors are responding to her chemo. We had to be at outpatient registration at 12 this afternoon and were supposed to have sedation, then go to CT by 1:30. Everything actually went as planned. They had to give her a contrast that had to be in her for about 40 minutes before they could do the CT and that put us going back to CT pretty much on time. She fell asleep before they took her back and stayed asleep while they put sedation medicine in her to make sure she wouldn't wake up during the CT. Everything went smoothly and we were able to get in and out in a timely fashion! I am not sure exactly when we will know the results of the CT scan or if it will affect any plans for starting chemo next week. It would be nice if it shows the tumor is small enough to be removed now safely so that we could skip chemo this time and have surgery instead. But we also want them to do the best thing possible for Ambrosia and her situation.

Ambrosia had her first "professional" pictures taken yesterday. I had bought a pretty dress that was on clearance at Target from their holiday dresses and knew I wanted to get her picture taken in it. I also made a hairbow to go with it. So yesterday I took her to get her pictures taken and she did wonderful. The photographer said she wished all babies were as good as Ambrosia was to photograph. Here is one of the pictures from her session!

She now has sparkles all over from wearing that dress! I daresay a few have transferred themselves to me as well. I am glad to have some nice pictures of her.

That is all the updates I have for now. Thankfully nothing too exciting has been going on with us. It almost feels normal around here!

I've had a lot of people ask how we came to find out about Ambrosia having cancer, so I thought I'd write an entry about it. On October 6th, 2012, our family went to the Louisville Zoo for their Trick or Treating. My husband was the first to point out that he heard Ambrosia making a grunting noise and she seemed to be doing it with every breath she took. That was our first clue that something was going on. We made it through the zoo and after getting home I kept a close eye on her. She wasn't running a fever and didn't seem to have any other symptoms besides the grunting.

The following Tuesday, October 9th, came and I decided she needed to be taken to the doctor as she was still grunting even though like I said there were no other symptoms. I decided to take video of her making the noise just in case for some reason she stopped doing it before we got to the doctor's office. I wanted to make sure she was treated for something because I knew something wasn't right.

We got to the doctor's office and she was still grunting. They checked to see how much oxygen she was getting and it was lower than it should be. The doctor decided to test her for RSV and while they waited for the results of that he wanted to treat her with medicine through a nebulizer. She was treated right there in the office with the nebulizer and afterwards they checked her oxygen levels again to see if the treatment helped. It did in fact help and her oxygen was a higher level than when we came in. The doctor came back and said the test for RSV came back negative. He said he thought she had bronchiolitis and even though her test came back negative for RSV there are other viruses that can cause the bronchiolitis. He gave me prescriptions and a nebulizer in which to administer the medicine and had me come back two days later to check on her again.

I picked up her medicine and proceeded to give her the treatments every 4 hours for the next couple of days until we went back. We went back to the doctor on October 11th to check her progress. The treatments seemed to be helping her but she wasn't a whole lot better. He had me come back on October 13th to check on her again. On the 13th he decided to put her on a steroid to see if that would help kickstart things to move along. The steroid seemed to help and I thought she was getting better. The doctor had scheduled us an appointment for October 15th to check her again. We went and she did seem like she had improved. Even with the improvement her doctor wanted to see her again on the 18th.

On the 18th that morning she seemed like she had taken a turn and gotten worse again. When I got to the doctors office and they took her oxygen levels, they had to check it several times and we weren't getting good readings at all. Dr. Katz decided that maybe she had pneumonia and we should go to Kosair's to have a chest x-ray done. They wrote up orders for us to do just that but before we left he decided to take some blood from her to check first. He came back awhile later and said her white blood cell count was really high and that he would call ahead to the ER at Kosair's to let them know we were on our way.

I called my husband at home to wake him up as at the time he was working until 2 in the morning so he was still sleeping. I told him what was going on and that I thought he should come with me to the hospital. He agreed and I went and picked him up before going to the hospital. The entire time this was going on from the first visit, I had a hard time thinking it was a virus or even at the end pneumonia because like I said from the beginning she was never running a fever. In the back of my head I always knew we would end up at Kosair's but I never thought we would be told she had cancer.

After we got to the hospital and they put us in an ER room, they started treatments with a nebulizer and got a chest x-ray. The x-ray showed fluid in her lungs and they were going to be admitting us to the PICU. Once we got to the PICU, they decided she needed a CT scan. Before she got her CT scan, they were already talking about surgery to drain the fluid from her lungs. A lot of things are fuzzy from that day, but I assume they wanted to do the CT scan first to just check to see if they could find out what was really going on. It's a good thing they did.

I was scheduled for an exam in my Anatomy and Physiology class that night and ended up leaving with a note from the hospital to take to my professor. Luckily campus was downtown and only a couple of blocks away. I was able to make it there and let her know I didn't think I was fit to take the exam. Clearly, as I broke down in tears and she had a hard time understanding me. While I was gone, Ambrosia went for her CT scan. After I got back it was a waiting game to find out the results of the CT scan. My parents and Wes' mom and boyfriend had been at the hospital with us for hours at this point as well. One of the surgeons came in and talked about the fluid in her lungs and let something slip about a spot on her liver. That was our first clue that something was wrong. I don't think she realized that we hadn't been told anything at that point. Awhile later the doctors in the PICU that had been treating her asked for just Wes and me to come with them. There was also a couple of other people with them. We knew it wasn't good when we saw all the people there. They took us to a room and there they delivered the news that there was a tumor on the liver and from what they could tell it had spread to her lungs. That is what was causing her breathing issues.

We were in shock and of course broke down in tears. The all sat with us while we cried and one of the doctors gave me a hug. They then went and got my parents and Wes' mom and boyfriend, while the chaplain stayed with Braeden in Ambrosia's room. The news was broke to everyone. They then left us to ourselves and told us to take our time coming back in the room. My first entry on here kind of shows a timeline of events from our trip to the ER and then the PICU that day from my Facebook statuses. That is the back story to how we got to where we are today with Ambrosia and her cancer.

We made it home Wednesday around 5:30 pm. Ambrosia ended up needing a blood transfusion before we could go home. She wasn't significantly low but she was low enough that they decided to give her a transfusion rather than us going home and having to come right back in for one. They scheduled home health to come to the house today to get a complete blood count from her. Our next clinic visit is on Monday morning. They will schedule a time for her CT scan when we go to the clinic on Monday for sometime on Friday the 18th.

Yesterday while I was cooking dinner, I had Ambrosia in her Jumperoo. She was jumping and playing. The next thing I knew she was crying. I looked at her and the tape that was holding her NJ feeding tube in place was barely hanging on and I could tell her tube had moved. I had to quickly pick her up before she moved it out any further and tape it back down. I literally almost caved to tears because I knew I was going to have to call the doctor and tell them what happened. I knew it meant a trip back to the hospital. I literally waited about 10 minutes debating with myself about calling, but in the end I knew I had to call.

I talked to Dr. Cheerva and told her what happened. As I already knew all the rooms were taken, the only room they had available was what they call a treatment room. I honestly have not seen this room or know exactly where it's located, but they said if I could wait an hour or so they would get it cleaned for me. I ended up waiting a little longer so that I could take Braeden to Wes' work as he got off and then headed to the hospital with Ambrosia. When we got there, it was determined we shouldn't have even needed a room. We just needed them to register us as outpatient so we could get an X-ray to determine if her NJ tube was still where it needed to be. If for some reason it wasn't, they were going to schedule it to be replaced the next day. We got X-rayed and luckily it had only moved slightly. After conferring with Dr. Cheerva, she decided it was still in an okay place to use so we were sent home. I just have to watch her for any signs of it giving her trouble.

Home health did come this afternoon to take her blood to get her complete blood count. I got a call from the nurse a little while ago, but she was asking if they told me what her white blood count was when we left and whether or not she was getting neupogen shots. She said she hadn't got the full report back for her counts yet. I expect if everything is okay I will not hear anything. Hopefully I won't receive any more calls about it tonight!

Our chemo ends tonight and we will be going home sometime tomorrow. Hopefully as early as possible tomorrow. Dr. Cheerva came to see us earlier today. She said she met with the tumor board here and they were all pleased with Ambrosia's progress thus far in her treatment. From her last CT scan of her liver and lungs, they said the tumor on her liver looked like it had shrunk significantly. So much so that it was hard to differentiate between the tumor and the liver. That means in a week and a half when we have another CT scan of the liver, if it is still hard to tell which is the tumor and which is the liver they will have to do an MRI. Depending on the results of that, they may move ahead with surgery if the tumors on her lungs are gone and they can for sure tell where and how the one her liver looks. If they decide they can't do surgery just yet then we will have at least 2 more rounds or more of chemo to go before surgery.

Ambrosia is still being her normal cheery self. The only problem we have run into is her appetite is being hindered by the medication. At first I didn't know why she didn't want to nurse starting yesterday, but today I remembered she did this with this round of medication the last time. They started giving her a scheduled dose of Benadryl in between her scheduled doses of Zofran to help manage her nausea and that seems to help her actually want to nurse. Luckily because they have been giving her the scheduled Zofran from the beginning we have not had any issues with vomiting at all. I will have to keep that up for the next week until her numbers go back up to a normal range.

We had a nice surprise today. One of the doctors from our initial visit to the PICU, who was there when we were told about the tumor on her liver, came by our room to see how Ambrosia was doing. He said he was also going to talk to Dr. Cheerva to check her progress.
I thought that was really nice of him to do.

I am happy to be going home tomorrow and hope we have no incidents that bring us back in before we are scheduled to! Fingers crossed!

We came to the hospital at 7:30 yesterday morning to start Ambrosia's 4th round of chemo. The night before the nurse practitioner from the hospital called me to let me know what time we needed to be here and told me Ambrosia would be having a CT scan of her head in the morning to make sure the bleed had continued to go down. They also needed her to be without fluids for what I now realize was sedation for the CT test. That led me to believe that it was already set at a scheduled time for shortly after we would arrive. That ended up not being the case. They always seem to have a hard time coordinating with the sedation team as we have run into this problem before. I also found out after arriving that she needed a GFR test of her kidneys to check and see how they were functioning in case they needed to adjust any of her chemo medicine. All of this needed to be done before they would start her chemo medicine.

At one point I overheard the sedation doctor talking to the nurse practitioner who said they couldn't work us in until 1 pm at the earliest. The nurse practioner popped her head in our room to tell me this and I inquired whether or not the tests could be done without sedation as they had been previously. She checked with the radiologists who agreed that we could do it without the sedation. Soon after we were able to get her CT scan done and then I was able to feed her so she could have the GFR test done. All tests completed we were ready to start chemo! Or so I thought.

Her chemo ended up not being started until sometime after I left to eat dinner with my parents, niece and nephew, Wes and Braeden. When we came back it had been started. Everything has been going fine so far. As long as everything goes as planned we should be in 5 days.

In other news, the nurse practioner with neurosurgery came by to say that Ambrosia no longer needed to be under their supervision. Her bleed in front of her brain had been clear enough that they don't need to see her anymore. So that is good news!