We made it back up to the 7th floor yesterday afternoon. It happened close to when I had to get Braeden so I hadn't had a chance to set up the laptop until late today. Everything has been going great up here. Ambrosia is still acting like herself being smiley and happy. We had a toy waiting for us when we got upstairs yesterday as well. Then today one of the nurses had saved a toy that was brought around while we were down in the PICU and brought it to us today. We just love it up here!

The plan for next week is for Ambrosia to have another line placed by the surgeons on Sunday morning. Then on Monday morning they will hook her up to the machine that will collect her stem cells. The process takes 6 hours and we will be back in the PICU so they can monitor her closely while they do the collecting. If they don't get enough stem cells from her on Monday, they will collect again on Tuesday. Once they have all that they need, the line will be removed right there at the bedside.

After the collection, we will be discharged to go home for a few days. The doctors were going to take a look at her road map and let me know exactly how many days we can be home. Then it will be back in for our next round of chemo.

Everyone has talked about how well the tumors have responded to the chemo. One of the surgeons on the tumor board today said she was remarkable and they were so pleased at how well the tumors had shrunk in response to the chemo. Hopefully she will only need a couple more rounds before they can remove the tumor on her liver. Then it will be time for the high dosage round which will be 6 weeks in the hospital. It will all be worth it when she is cancer free.
 
We didn't return to the 7th floor yesterday even with her CT scan showing no changes. I got a little frustrated with the neuro team as they seemed to not be giving me all the information as to why we weren't going back upstairs. When I asked they told me it was because of her platelets, but the PICU nurse practioner told me that it was because her soft spot on her head was a raised bump instead of smooth like it should be. So they wanted to keep her in the PICU to observe her some more. It was upsetting for me but I have the best parents, who came down in the afternoon to give me a break. I was able to go Christmas shopping and then pick up Braeden from school before returning to the hospital.

After we got back to the hospital, the Super Sibs group that meets the last Wednesday of the month came to get Braeden so he could play games and do activities with them. The Super Sibs group is for siblings of children with chronic illnesses. They help include the siblings in activities and fun things to help cope with what is going on. We ended up getting him from the group a little early so we could go eat dinner at the Tumbleweed on the Waterfront here in Louisville. I hadn't been to that location before and we had a good time and the view was nice!

This morning they decided to do another CT scan. I heard from the PICU doctor that the neuro team was going to decide to send us back upstairs for sure after this scan. I just spoke with a nurse practioner from the neuro team, who I hadn't met yet, and he told me that they decided to send us back upstairs! This is welcome news as everything is so much easier up on 7West. They will still follow her for a few days and decide when they may do another CT scan to make sure the bleeding in front of her brain is still going down. But she is doing fine and doing all the things she should be doing so they are pleased and comfortable sending her back upstairs. He said he knew the PICU team didn't have a problem with it as they have been hounding the neuro team about when we can go back upstairs.

I don't know when we will go back upstairs today. They may have to move some patients around to accommodate us depending on how many there are up there right now. Hopefully it will be soon and before I leave to get Braeden from school!
 
We are still downstairs in the PICU. Ambrosia had a slight change in her CT scan of her head yesterday morning so they kept us on the PICU floor. The oncologist came in yesterday and said her belly felt smaller which prompted me to ask when the next CT scan of her abdomen and chest would be to check how the tumors were responding to the chemo. He said it was good idea to do one and last night when they rescanned her head they also did her abdomen and chest.

She had another recheck scan of her head this morning as well. Both CT scans of her head from last night and this morning show no change. However, her platelet count has changed even though it's still in the 100s. So they want her to be a little more stable with her platelets before we go back upstairs. The nurse practioner that works with the neurosurgeon said they will do another CT scan in the morning and if it still shows no change then we will call it a day and head back to the 7th floor! Good news there.

As for the CT scan of her abdomen and chest, it shows there are less nodules on her lungs (yay!). It also shows the tumor on her liver has shrunk (yay!). This is of course good news. The oncologist today said the next step will be her stem cell collection in preparation for the high dosage of chemo. I am not sure when that will occur. I have a lot of questions written down to ask in the morning when I see them again.

Good news all around!
 
Ambrosia had a CT scan again this morning to check the bleeding in front of her brain from the fall. The PICU doctors thought that in one area it may have changed size ever so slightly. The said that they would have to wait for the neurosurgeons to give their opinion on it but were pretty sure we would be staying on PICU floor for today. The neurosurgeon came in awhile later and said it is really hard to tell if it had changed or not as it was so slight. But to err on the side of caution we would remain in the PICU through today and they would do another CT scan Monday morning. They did change how often Ambrosia has to be checked from every hour to every 4 hours as they feel she is doing just fine.

Tomorrow we were supposed to come in for them to place a catheter in for them to collect the stem cells to store for later. That is obviously not going to happen yet. They will have to get clearance from the neurosurgeons before that can happen and her platelets have to be stable.

After a high dosage of platelets were transfused last night her count had gone up to slightly over 100. However after checking later on today she had dropped back down to 34. She has since received another transfusion and they have sent off blood to check her levels again.

I was able to get her smiling and laughing some today so that was good to see. Our favorite nurse from 7West has come to visit us down in the PICU last night and again tonight. She told me they are holding room 745 for us in anticipation of us coming back upstairs. She said it's the biggest room as well. She told me I looked more rested today and keeps encouraging me to take care of myself. Hopefully after her CT scan at 6 in the morning, we will be able to return upstairs to 7West and she will be our nurse again tomorrow night!
 
We were able to enjoy Thanksgiving with both sides of my family on Thursday. We set ourselves up in a separate room and asked everyone that entered to wash their hands and put on antibacterial soap. Ambrosia was doing pretty good. A little whiney at times but she did allow others to hold her. She still was having some issues with vomiting and had been constipated for a couple of days. Later that night on the way home I stopped at Walgreens to get some Benadryl to help with her nausea as they had told me to keep some on hand for her in case we needed it. She had been getting Zofran for her nausea but in between times she could have the Benadryl. When we got home I called and talked to the Oncologist on call to ask the correct dosage to give. I gave her the Benadryl around 10 pm and she went to sleep.

At 4 am, I heard her start to cry on the baby monitor. I went immediately to pick her up and after I did she vomited. After turning on the light to clean her up, I realized that what I was wiping up was blood. I called the on call oncologist again and while I was on hold I proceeded to change her clothes and get myself together as I knew we would be going to the hospital. We were due to go in the hospital anyway at 8 am for them to check her numbers by doing a CBC. After talking to the on call doctor he did tell us to come on up to 7West (the oncology floor of the hospital).

We came on to the hospital and they got her settled and checked her platelet counts. Her count was down to 1 so they started a transfusion of platelets. After that was finished they also gave her a transfusion of blood. After they checked her numbers again, her platelets had only moved up to 2 so she got another transfusion. In the meantime, they also took a couple of abdomen x-rays just to see why she may have vomited blood. The xrays came back fine except she was backed up with stool. Her low platelet count can be to blame for the vomiting of blood. They gave her stool softener to help her pass what was in her since she hadn't gone in 2 days. Dr. Raj let us know she would probably be in the hospital at least until the next day as her ANC count was at zero as well.

So last night after sleeping for awhile on the bed, I heard Ambrosia wake up. I got up to feed her and sat in the chair that also pulls out into a bed. She was laying on the boppy in my arms and nursing. A while later, I woke up to a thump and realized Ambrosia had fallen out of my lap and onto the wood flooring. She wasn't crying, but I picked her up and began to nurse her again. I was really tired and still out of it. Not long after that the nurse came in to do vitals and I woke up enough to notice she had a bruise on her forehead. I then explained to the nurse what happened.

From there we turned on the lights to see the extent of the injury. She has a bruise above and slightly below her eyebrow. The nurse brought in the nurse practioner and they agreed she looked fine and was acting normally. The nurse practioner did however go ahead and let Dr. Raj know what had happened to make sure they didn't want any other tests run. He decided she needed a CT scan. After her CT scan, they saw there was some bleeding in front of her brain. They called the neurosurgeon to take a look at the scan. The nurse practioner that works with the neurosurgeon looked at the scan and said that they would monitor her to make sure there was no additional bleeding. We had to be moved to the PICU so they could really keep an eye on her. She has had a second CT and there have been no changes. We will be going for a third CT scan here in a couple of hours. If this one shows no changes we will not have to have any more until tomorrow.

Everyone has been really sweet and understanding in telling me that it could have happened to anyone. I've gotten a lot of hugs as well. It was an accident and my head knows that, but my heart hasn't caught up to my head yet. I am understandably upset with myself and for her. Especially as this is something that I caused unlike the cancer. I am not certain how long our stay will be this time in the hospital. As soon as the neurosurgeons clear her we will move back upstairs to 7West. She is still receiving platelet transfusions to get her numbers back up.

Please continue prayers for her.
 
Ambrosia had her 2nd clinic visit today. They took blood from her like they normally would but took more than usual as the transplant coordinator needed it to start her work up for the stem cell harvest. With that in mind, we will be going to the hospital Friday morning for them to do another CBC (Complete Blood Count) to make sure her numbers are okay and she doesn't need another transfusion as her hemoglobin level has gone up some since Sunday but is still low. They also gave her a push of a chemo medicine through her central line while we were there in the office. I was unaware they were going to do this. We will be going back to the clinic next Tuesday and hopefully will know when the next CT scan will be by then.

Last night the home health nurse from Walgreens came to show me how to flush Ambrosia's central lines to keep the blood from clotting in them. She also showed me how to give Ambrosia her neupogen shot. I had major anxiety about giving her a shot before the nurse came. After practicing a couple of times on a fake circle of skin the nurse brought I felt comfortable doing it. The nurse held Ambrosia while I administered the shot. It was over pretty quickly and I got through it. We will see tonight how I do when it is just me and Wes to do it. The nurse also showed me how to immobilize Ambrosia's arms with a towel in case I ever have to administer the shot by myself.

The only problem we have had since being home is Ambrosia is starting to vomit again from the chemo medicine. I need to keep towels by my side to be able to clean up when she does it. I asked while we were at the clinic today if we could up the time of her anti-nausea medicine from 8 hours to 6 as that is what they had done in the hospital. I was given the okay to do that. Hopefully it will help and we will have no more issues.

In the midst of all this we were given the go ahead to enjoy Thanksgiving with my family. Both sides of my family are having Thanksgiving together this year. We are doing it at the church I grew up going to and Ambrosia and I are going to separate ourselves by being in a Sunday school room. This way we can help control the risk of infections. Everyone will have to wash their hands before entering and then using hand sanitizer as well. As long as Ambrosia continues to do well the next couple of days then it will be nice to see everyone. Especially those who haven't gotten to meet her yet.
 
We made it home again today. They put Ambrosia back on her continuous feeds last night and she's not had any issues with that. She is still nursing on demand which suits me just fine. She had to get her fourth blood transfusion today before we could leave as well. 

Tomorrow, I have to call the clinic and make an appointment for Tuesday. Hopefully they will tell me it is okay for her to go to Thanksgiving celebrations if we are careful. Home health is coming to the house tomorrow night to teach me how to inject her with neupogen. I am a little uneasy about this but it has to be done. The neupogen will help her numbers come back up faster. It actually gives me a little anxiety about having to give her a shot but it has to be done so I will suck it up and do it. 

Braeden spent the night in the hospital with me last night. He seems to enjoy that. We had a pretty good time and he got to stay up a little later than normal. 

Here's to hoping the next two weeks go smoothly and Ambrosia does not get any infections or sickness that would put us back in the hospital. 
 
Another mostly uneventful day. They started her chemo a little earlier today and will start it a little earlier tomorrow so we can go home as early as possible. The doctor on call here this week brought up the possibility of having to stay while her numbers drop and then come back up. I was very upset when I heard this. However they checked with the oncologist that is in charge of her care and she was okay with us going home. So that is one less worry.

Her oncologist also came to talk to us about the possibility of getting stem cells from Ambrosia to be used later with a high dosage of chemo. She explained that they take the stem cells after giving a medicine that helps boost her numbers up and releases what they need into the blood stream. Then they hook her up to a machine and collect the stem cells. However, she thinks Ambrosia's weight is not where it can be to be able to collect it that way. They can harvest the bone marrow a different way by taking some from both of her hip bones. They would put her under anesthesia for it and it would be an outpatient procedure. She will be talking with others to figure out which route they will take.

They will then keep her stem cells frozen until the high dosage of chemo is scheduled. They won't schedule that until almost all of the tumors are gone, if not already completely gone. The hope is to do a scan during the week of the 25th to see if the tumors have shrunk. They will then have the surgeons look to see if the tumor on her liver looks small enough to be removed yet and if the ones on her lungs are completely gone or few enough to also be removed. Dr. Cheerva thinks it will take 2 to 3 more rounds before they are shrunk enough for surgery. She is only speculating at this point.

After knowing that the tumors are gone or small enough to be completely removed, they will do surgery. Then after recovery time from that, they will do the high dosage of chemo and then "rescue" her bone marrow by putting her own stem cells back in her. It is put in through a line just like a transfusion. They want as much as the tumors to be gone as possible before doing the high dosage of chemo so they can get anything that might be lingering in her system.

Dr. Cheerva said that after looking at what has been done for these types of rare tumors, when they do a high dosage of chemo it really helps the survival rate of the patient. It will be hard as she would be in the hospital for 5 to 6 weeks and then wouldn't be able to leave the house for awhile once we got home. But if this procedure in anyway helps raise her survival rate and the chance for the tumors to NOT reappear then I think it is worth it. Luckily this wouldn't happen for a couple more months so we would have time to prepare for it.

The Main Line radio stations here in town were doing a fundraiser for Kosair Children's Hospital for the past two days. One of the stories they played had this song playing in the background, so it's been in my head ever since this afternoon. Just thought I'd share.
 
We had an uneventful day today. These are the good days. Ambrosia is still doing great. Smiling and playing all the time. She is also getting her third tooth already! With her fourth one right after I am sure. Here she is in the wagons they have here for the kids. They put her in this while I leave to get Braeden from school and bring her to the nurse's station so they can watch her.
Tomorrow we are getting a visit from her primary Oncologist to discuss a plan that they are thinking about doing with her. They have talked about taking some of her stem cells and storing them for a later time in her treatment. They will then give her a higher dosage of chemo than they have been giving, which will wipe out her bone marrow. They will then put her stem cells back in her to rebuild her bone marrow. If they do this we will be in the hospital for several weeks. Not only that, but after she will be home bound for quite awhile. I will know more details tomorrow after talking to her doctor. I saw her briefly today and she assured me they would work on making sure we are home for Christmas which is a relief.

I have started nominating some of her nurses for what they call a DAISY award. I am hoping one of her nurses will actually win as they all deserve to be recognized for the excellent care they are giving her.

I will hopefully have more news tomorrow about the stem cell transplant they want to do.
 
Yesterday morning they stopped Ambrosia's continuous feeds at 4 am along with me being able to nurse her. They were supposed to have some testing done in the morning to get a baseline for her hearing and kidney function as some of the medicine she will be getting can affect both. There was a miscommunication between all the departments in getting coordinated with getting her down to where she needed to be. Finally, they got it sorted and a time of 1 pm was given for testing. All the while she still hadn't had anything to eat. She did very well though.

At 1 pm, we went down to sedation. The audiologist was waiting and started one portion of the test while they waited on the sedation doctor. Then we were told the sedation doctor was with someone else and it would be another 15 minutes. The audiologist had to be at a meeting so she went on and started the next portion of the test while a nurse held Ambrosia and got her to sleep. She slept through the last part of the test with no problems. Then the sedation doctor walked with us to the Nuclear Medicine department for the kidney function test. They got that started no problem and with no sedation. So basically we waited forever for nothing as sedation services were not needed.

They started her chemo medicine around 7 pm last night. She did great. Around 1:30 am she woke up and was wanting to play. I took some video of her playing. Then the nurse came and got her. Put her in one of the wagons they have and walked around with her until she fell asleep. They kept her at the nurses station so I could get some uninterrupted sleep and brought her back in the room around 6:30. She has been up and playing again this morning. They will start her chemo medicine again this evening.