After my last post on here several things happened. The PET Scan was scheduled at the James Graham Brown Cancer center and we got to ride in an ambulance over there. I got us registered while the nurse that accompanied us, along with Wes and Ambrosia, went on back to the PET scan area. Once I got us registered, I went to join them only to be greeted by the anesthesiologist who informed me that their policy wouldn't allow them to sedate anyone under the age of 2. The PET scan technician was also unsure whether or not they were even allowed to do the scan on someone under the age of 2 there. It was a big mess. I don't know how Ambrosia's age was somehow lost in the scheduling of things, but it's not like her birthday is a big secret on her medical records! The scheduler at Kosair apologized and told me they knew of her age when she scheduled it. Somewhere along the way things weren't communicated properly.

We were told that maybe someone from Kosair could come over to do the sedation for Ambrosia and then do the scan. That was checked into and ultimately was decided it couldn't be done. We were then rescheduled to have the PET scan done at the Norton Pavilion on Saturday. They normally don't do the sedation appointments on Saturday but we were reassured that an anesthesiologist was coming in just for Ambrosia to get this done as it was the only reason we were still in the hospital.

Thankfully everything went off without a hitch on Saturday and we were able to get the PET scan completed. After that we were discharged! Dr. Lucas had decided to give us a break and didn't make us come back to OMO until this morning. I was grateful for that break. We were able to lounge around the entire day and just enjoy each others company. It was definitely nice!

This morning we had our OMO appointment. I had a slow start getting everything we needed together (myself, Ambrosia, medicine, feeds going) and once we got to OMO registration I was told they weren't ready for us. Apparently our appointment had been originally scheduled for the afternoon but it was changed later and OMO was not aware of it. While waiting at registration, Ambrosia's feed bag busted open because it said there was a clog in her line. I was beyond frustrated at this point as all I could see in our future was having to get her NJ tube replaced once again. After getting a new bag we headed over to OMO where I tried to figure out what was clogged. Luckily it turns out that the part of the tube connected to Ambrosia was not clogged, it was the line from the bag itself. Thank goodness for small miracles.

Labs were taken from Ambrosia and we settled in to wait for results and to be seen. Awhile later Dr. Cheerva came in. Ambrosia's counts were all good. Her ANC was up, platelets and hemoglobin were both good as well. So good in fact that we don't have to go back until Wednesday! Another break tomorrow is definitely okay with me.

Unfortunately, the official read for the PET scan was not in yet. However, Dr. Cheerva could pull up the scan and looked through the pictures. On the right side of the screen was a color scale. It ranged from black to red to yellow to white. The black meant the tumors were inactive on up to white where they were very active. As she was looking we both saw a couple of tumors had lit up yellow. This of course was not the news we were hoping for. Dr. Cheerva said she would email some people across the country about Ambrosia to see if there were any new thoughts as to how to proceed with treatments. She mentioned some oral chemotherapy medicines that might be helpful to Ambrosia. She said that in other patients it has really helped although it is not a cure. I should have clarified with her, but I believe she meant in keeping the tumors from spreading in between treatments.

I asked her if she wouldn't mind contacting doctors at St. Jude's to see if any studies are being done on Ambrosia's kind of cancer currently. I told her that of course a lot of people had brought up St. Jude's and we were only using them as a last resort as it is so far away. I know they have been in contact with other doctor's before now about Ambrosia, but I don't know if any of them have been from St. Jude's. She mentioned after her last CT scan before transplant that their network was the entire world. That's how far they have looked for successful protocols for Ambrosia's cancer.

She did mention that they would wait for the official read on Ambrosia's PET scan, but we could both see the tumors lit up as active. When we go back to OMO on Wednesday, they will have hopefully been able to get in contact with people and discussed how best to proceed with treatments. I pray they are able to come up with something worth trying as I am not ready to go elsewhere for treatments.

After a very long wait we were given the results of Ambrosia's CT scan from Thursday. Unfortunately there was no significant changes from Ambrosia's last CT scan to this new one. So the plan is to have Ambrosia get a PET scan. The PET scan will have to be done at James Graham Brown Cancer center instead of here at Kosair. They are hoping to schedule it for later next week.

What they are hoping is that the PET scan will show whether the tumors in Ambrosia's body are still active or not. The only complication is that the PET scan sometimes does not read tumors that are smaller than 1/2 inch correctly. It could tell us the tumors are no longer active even though they may still be.

Dr. Cheerva is still aiming to get us home by Monday or Tuesday at the latest. They are continuing to go down on her pain medication. Although that has been put on hold today as Ambrosia has developed a little bit of a tremor in her hand that could be attributed to withdrawal from the pain medication. They will give her a break today and take it down more tomorrow. They have continued to up her feeds as well.

It will be nice to be home for awhile. Braeden and Wes are both ready for us to be home too I believe. Braeden told me yesterday as he was leaving that he misses me. Broke my heart!

After that first good day of Ambrosia being back to normal, they started to lower her pain medication. They also started her feeds back up very, very slowly. Things seemed to be going fine except yesterday and some the day before, Ambrosia would not let me out of her sight for a second. As soon as I was out of her line of vision she would be screaming. It was a lot of holding her again. Our nurse at night got to thinking that maybe the neupogen she had been getting to help her counts come back up was causing her some pain. We tried a different pain medication to see if that helped.

The new pain medication seemed to help but only slightly. Ambrosia didn't rest very well that night which of course meant that I didn't either. Yesterday was more of the same. They decided to stop her feeds in case that was a source of her pain. Doing that really didn't make a difference so her feeds were started back up today. Last night her nurses decided to try some ativan, which they have used before to help calm her down some. The combination of that and some benadryl and pushing her pain medication seemed to help her be able to rest. They had also not given her the neupogen last night because her counts were good.

This morning Dr. Cheerva came to see us to see how Ambrosia was doing. They decided to hold off on lowering her pain medication for today to see how she does. Dr. Cheerva thinks it was the neupogen causing Ambrosia some pain. Ambrosia is going much better today. She has been resting a lot this morning but is playing now.

One of my friends posted this picture on my Facebook page:

That saying is definitely true. I never knew how strong I could be until Ambrosia was diagnosed with cancer. There is no other choice for me but to be strong. Ambrosia and my family are counting on me to be strong. So that's what I am doing and will continue to do long after this battle is won.

I didn't realize it has been so long since I updated the blog. There really hasn't been a whole lot to update about. Ambrosia had still been feeling yucky but her pain seemed to be under control. Her pain medication was upped a couple of more times to help keep her pain down. After a few more days of feeling bad last night she started to act like she was feeling so much better. Last night while she was sleeping her heart rate got as low as 118 which is awesome as her heart rate has been continually in the 140's. Hopefully that means she was able to rest really well last night.

Today, she has been up and playing and babbling some. That's so great to see when just days before all she would do is let me hold her or sleep. I got her play mat out and she played for awhile on it to get some exercise. She is a little wobbly sitting up as she hasn't been doing much of that while she was sick. Physical therapy came today to see her to reevaluate her needs. She's doing good, we just have to work to get her strength back a little bit. Speech also came today and tried to get her to eat small pieces of a banana and some baby food. She wasn't too interested except to play with it all.  They will be checking back again more often now that Ambrosia is feeling a lot better.

This evening right before shift change for the nurses, Ambrosia threw up some. She got it on her clothes so I had to change her outfit. She was sitting up in her bed after I had just put her new shirt on. While standing in front of her I picked up her blanket and moved it to the couch. I literally turned my head while I threw her blanket and the next thing I knew she had lost her balance. She hit her head on the bars of her crib behind her. Her nurse was still in the room when it happened. I picked her up immediately. We couldn't see any bumps and unfortunately her crying made her whole head red so it was hard to tell where exactly she hit. Since she's had to have platelets almost every day for the past couple of weeks, they had to do a CT scan to make sure there were no issues.

I, of course, feel horrible even though this was a total accident. We went down to CT and the technician asked why we were there. I had to repeat the story. That's the hardest part, having to tell it over and over again.

Here's a picture of Ambrosia during her CT.

The resident came in little while after we got back from CT and said she had taken a look and didn't see anything but would have to wait on the radiologist to read it to be certain. Hopefully nothing will come from it except maybe needing to up how low her platelets can get before she needs a transfusion.

Even with the little hiccup at the end it's been a good day. I am just glad Ambrosia is back to herself! They may start to lower her pain medication slowly to see how she acts tomorrow. So fingers crossed that goes well and she doesn't need it as much!

*I forgot to mention Flashes of Hope! There is a group that comes annually to take pictures here of the kids. They asked if I would like Ambrosia's picture taken and I said sure. She had only been awake from a nap for a few minutes when they came in, so she wasn't extremely smiley. They took quite a bit of pictures so it will be interesting to see them. I really don't know if I will be getting copies or what, but I certainly won't turn any down that they want to give me!

I may be premature in writing this as the day is not over, but it's definitely been a hectic day!

Dr. Lucas came in early this morning to see Ambrosia. He told me what I had already been told about Ambrosia's gallbladder. I asked him what could be done about it when they would be able to. He said there was medication they could give that could help take care of it, but they would talk about it in rounds and make sure it was compatible with the other medications she was receiving. He said the sludge in her gallbladder is a common occurrence from the chemo she received.

Awhile later the nurse practitioner came in to see us and let me know what changes and things were going to happen today. They ordered a heart echo because of the results from her EKG the other day. The EKG had showed some abnormalities so they wanted to do the echo to get a really good look at things.

She said that Ambrosia had tested positive for a certain fungal infection that can be particularly dangerous. She said they had been testing for it everyday and thus far the results had been negative. She said the antibiotics that Ambrosia has been on could have skewered the results and made it have a false positive. So tonight when they draw labs they will be getting enough to do a more specific test for this fungal infection. If this test comes back positive then they will have to do a CT scan to see where a fungal infection may be in her body. In the meantime they switched one of the antibiotics they were giving to another that treats the fungal infection to err on the side of caution.

They decided to give Ambrosia some Lasix, which helps her urinate out a lot of the fluids she's been receiving. She said the fluid retention could be a partial source of some of her pain. The nurse practitioner also asked if I thought they needed to go up some more on her pain medication. I thought maybe they should as Ambrosia was still grunting like she was in pain even after receiving doses of the pain medication from me pushing her button. So that was done as well. She said that the results from her pancreas enzymes test came back normal. I believe that was all the information she gave me this morning. It was a lot to remember!

Later the technician came to do Ambrosia's heart echo. She did it while I was holding her and she was able to do it fairly quickly. I think it was the quickest heart echo she has had to date. Some time passed and I received a call from my husband. He had left home to get some lunch for him and Braeden. Unfortunately, he said he had been noticing the last couple of days that he thought the transmission on his car might be slipping. He was on his way to get it looked at and I could hear in his voice that he was stressed. A short while later he called back to tell me that they couldn't look at his car until tomorrow, but of course that meant he would have no way home. I ended up leaving the hospital to go pick them up and they drove me back here.

I wasn't gone very long, but in that short amount of time Ambrosia's nurse apparently had an allergic reaction to something and had to give herself an epipen shot! So I came back to a different nurse. Things have been quite hectic here for the nurses as well today I think.

Dr. Lucas ended up popping back in before leaving for the day. He told me the results of Ambrosia's heart echo were normal He asked me how I thought Ambrosia was doing since they upped her pain medicine again and I told him she was still grunting like she was in pain even with me pushing her button as often as I could. He decided that they should up it again. He said she may have a higher tolerance for it and just need a bigger dose. He then mentioned that they were going to do another chest x-ray today. It wasn't something the nurse practitioner had mentioned earlier but he said it was part of today's plan. So that has now been done but I have yet to hear any results from it.

I have had visits from the child psychologist to check and see how Ambrosia and I are both doing. She also gave me a new bead to add to Ambrosia's necklace and it represents strength. It's a small acorn and the card says, "Acorns are symbols of great personal strength and survival." The music therapist also came by the room today and asked if I thought having a CD player with some soothing music might help Ambrosia relax some, especially at night. I thought it was worth a shot and a short while later he brought some music and a CD player. I will be trying it out tonight. He also offered to play live music for her if I thought she might enjoy it sometime. One of the Child Life people also brought a star machine that projects the night sky on the ceiling for Ambrosia to look at when she wakes up and hopefully will settle back down afterwards.

Our nurse that had to go home today commented to me earlier about how much of a good mom I am. I know I am, but it's nice for it to be affirmed by other people sometimes. Our other nurse today said it was hard to see Ambrosia feel so bad, but that usually when you feel bad like that it means the chemotherapy is doing it's job. We are so hoping that is exactly the case!

I received more Cheer cards today. It's nice to take a moment out of the day to read from everyone who is thinking about us. Thanks for that!

Hopefully we only have a couple more days of Ambrosia feeling yucky and then she will be back on the mend!

Dr. Lucas saw us this morning and after examining Ambrosia, he decided they needed to do an ultrasound on her abdomen to make sure there was sufficient blood flow to all the organs. This meant Ambrosia had to be NPO and couldn't eat until after the ultrasound. The ultrasound technicians came up to our room and Ambrosia was very good and laid still for them.

Wes took off work to come up and he asked the ultrasound technicians how the test went and they told him everything looked the same as the last ultrasound. Except they said something about the gallbladder. Awhile later the nurse practitioner came and told me the results of the ultrasound. Ambrosia has some sludge in her gallbladder along with a gall stone which could be the source of some of her pain. At this point in time they aren't going to do anything about it since her pain is under control with medication. Tomorrow I will be asking what they plan to do about it when they can and how they will monitor it until then.

The nurse practitioner also said they will continue to do blood tests to check the function of her liver and other surrounding organs. They did that this morning and all came back normal. She said the ultrasound showed Ambrosia's kidneys were a little enlarged as well. So they will continue to monitor that too.

For now Ambrosia's pain medication has been upped again for what she is continuously given, and I can also push the button to deliver more to her if I feel she needs it. She has been able to rest a lot more today without me having to hold her so I take that as a good sign. We probably still have some rough days ahead so continue those thoughts and prayers!

Today has continued to be a rough day. Ambrosia's heart rate has been up all of today which indicates she's in pain or working on developing a fever. Her pain medication was upped twice today to try and help control any pain she may be feeling. Unfortunately it doesn't seem to have helped very much. She's been given some extra fluids as well.

After upping her pain medication twice, it was decided they needed to do a chest x-ray and an EKG just to make sure nothing else is going on besides pain. Her chest x-ray showed no complications. I have not heard about the EKG.

A little while ago, I had the nurse take her temperature again as I could tell she felt way warmer than she had all day. She had finally spiked a fever of 103. Blood cultures were taken and more fluids were started. Normally they would order a chest x-ray but since that had already been done they weren't going to do it again. They had already changed which antibiotics she was on so that was taken care of as well. She's been given Tylenol and hopefully her fever will subside. If it continues they will take another blood culture during the night. She will also be getting a blood transfusion tonight as well.

It's hard to see Ambrosia like this especially since she hasn't felt good enough to play. Most of the day has been spent holding her while she sleeps. If this is what it takes to get her cured then I can handle it.

Ambrosia's has filled up her first Beads of Courage necklace. The big bead towards the top left of the picture represents her stem cell transplant. The bead at the top right represents our stay in the hospital on Easter. She's going to have a lot of beads once we are through with this journey!