After my last entry, we had to increase Ambrosia's oxygen and pain medicine some every day to help keep her comfortable. During one of the visits, I asked the Hosparus nurse if she could ask the Hearts and Hands team at the hospital about getting the paper and ink to get Ambrosia's hand print so I could have jewelry made with it on it. The Hosparus nurse returned with more than just the paper and ink. There was a whole bunch of things to do for memory making. The Child Life therapist and Art therapist were going to come out to our house on Saturday morning to do all of them with us.

Friday night around 8 pm, I had to call the Hosparus nurse because I could tell Ambrosia was struggling more with her breathing. She was retracting quite a bit. We went up on her oxygen. Around 3 am I woke up and went and checked on Ambrosia. She seemed a lot worse than before and I ended up calling the Hosparus nurse again. This time she came out to do an assessment on Ambrosia. After listening to her, the nurse decided to call the oncologist on call and see if they could go up again on her pain medicine and also her oxygen. We were both exhausted but were watching Ambrosia very closely to see if the changes made any kind of difference. It seemed to and the nurse made sure that I was to call her right back out for any reason if I felt like I needed to.

At 9 am, the Child Life therapist and Art therapist from the hospital came to the house. The first thing they did was take a mold of Ambrosia's foot and then one of her hand. Ambrosia wasn't too happy about it but she was so much not herself that she couldn't fight much either. Right after they arrived I noticed Ambrosia started to have a rattle sound when she was breathing. I knew this was not a good sign and immediately called the same Hosparus nurse back out to the house. While we waited for her to come, we made bird's nest necklaces. This was an activity I had missed out on at one of the mom's dinners the last admission in the hospital. Here is mine:

Each bead represents a family member. Braeden also made a necklace and chose his beads very carefully to represent each one of us, including the dogs. The Hosparus nurse came and looked at Ambrosia closely. She then stepped out to make some phone calls to the oncologist on call. When she came back she told me how much they had decided to go up on her pain medicine and also her oxygen. Unfortunately what came next was something I could feel but was not ready to hear. She said that Ambrosia wasn't going to last through the night. I hugged Ambrosia close and let the tears flow.

After a few minutes we continued with memory making. They took Ambrosia's hand print so I could have jewelry made with it. They also took Ambrosia's thumb print and put it on white clay that we can hand out to family. In addition to that they had a canvas and a picture of what we could do on it. It was a family tree with our hand prints. I put it aside for a little later. Wes and I called our respective parents and let them know the news we had gotten. We settled in for a long day of holding and loving on Ambrosia until she passed.

Later in the afternoon, Wes and I decided to get Braeden and make sure he understood what was happening. It was a hard thing to talk about but we all hugged and cried together. Braeden said he understood and after a few minutes of hugging and crying he was ready to go back to playing. As the day went on, the later it got the longer in between breaths it would be for Ambrosia. The chaplain from Hosparus came to sit with us and explained a lot of the process that Ambrosia was going through. He said sometimes it can last for a very long time and she could be like she was for hours. He stayed for quite awhile before he decided to give us more time together as a family.

I had been periodically holding my hand over Ambrosia's heart to feel it beating. There were times that her breathing got to be several seconds in between breaths that I kept thinking after the last one she wouldn't breathe again. And then she would. After awhile we got settled in and decided to watch a show. Within a few minutes of it being on my eyes were fixated completely on Ambrosia and my hand was over her heart. I couldn't feel a heart beat anymore, yet she was taking breaths still even though they were far apart. I kept having to adjust my hand and was still not feeling a heartbeat. I knew then she had passed in my arms.

Wes came and got her and was trying desperately to hear a heartbeat. We both knew she was gone. I called the Hosparus nurse to tell her, who said she was on her way. Our family that was present with us starting making phones calls to tell other loved ones that she had passed. The Hosparus nurse arrived and examined her and said she what we already knew. She gave Ambrosia back to me and we wrapped her up while I held her. The nurse started the process of notifying the appropriate people.

I held Ambrosia and something happened that I had never heard from myself. The deepest most gut wrenching sob came from within. It wasn't a sob or a cry I recognized. I have never felt that much heartache and pain.

A lot of time passed while I held Ambrosia and waited for the funeral home to come and get her. When they arrived, I carried her out to the funeral home's van. I laid her down and immediately embraced Wes and we both cried. After stepping away from Wes, Braeden was right there and buried himself against me in a hug. The chaplain later commented that at that moment he didn't know if Braeden was seeking comfort or giving it, but concluded it was probably both. I held the blanket we wrapped Ambrosia in my hands. Braeden took it and carried it back inside.

After everyone left and it was just Braeden, Wes and me in the house I couldn't believe how silent it was. The silence was overwhelming for me. I also felt completely numb. I ended up waking up around the time Ambrosia usually did the next morning ready to nurse. That moment realizing that I would never nurse her again was one of the hardest.

There is more that I want to write about but will end this entry here for now. My emotions are overwhelming me some so I need to step away.

Thank you to everyone for your support in every way shape and form. It is amazing how many people are touched by Ambrosia and her story.

I know a lot of people are anxiously waiting to hear about our wish trip to the Louisville Zoo this past Friday. I promise I will be writing a detailed entry about our trip. I was actually waiting for our pictures to come from the photographer before writing the entry. Just know that we had a wonderful time and got to do some cool things! It was definitely something we won't forget.

After our trip to OMO last Thursday, I noticed Ambrosia was acting less and less like herself. She is barely smiling or reacting when someone does something to try and make her smile, which is not something that has ever been a problem in the past. She is playing some but minimally and again with no smiles or laughing. Kourageous Kids came out yesterday and we were officially admitted with them even though they had been out a couple of times prior. While they were here I remarked how much I had noticed a change in her. The nurse decided to come with me to OMO for our appointment today to ask some questions about her pain management.

When we got to OMO today the nurse from Kourageous Kids was there. She asked the OMO nurse if they could put a probe on to check Ambrosia's oxygen level. Her oxygen was lower than it has been recently so she was put on some oxygen. The Kourageous Kids nurse also talked a little to Dr. Cheerva about her pain medicine and it was decided to up her medicine to twice the amount of what she had been getting. Dr. Cheerva decided it would be a good idea to get a chest x-ray while we were there to get a better understanding as to what was going on. When she listened to Ambrosia's lungs she said she was hearing very little breath sounds coming from her left lung where the tumors are.

The child psychologist had also come to the appointment today and spent the entire time I was there with me. She walked with me to get Ambrosia's chest x-ray. Ambrosia's NJ tube had also gotten clogged yesterday so it was replaced right after the chest x-ray. After all that was done we walked back to OMO. Dr. Cheerva was there looking at the chest x-ray. She called me over to look at it. She explained how the tumors were much larger now. So much so that they have pushed Ambrosia's heart over from the middle of her chest towards the right side of her chest. She showed me a comparison from the last chest x-ray to this one and it was obvious as to how much the tumors have grown.

The child psychologist stayed out to talk to Dr. Cheerva while I went back into our room and waited. Shortly thereafter the child psychologist came back in the room. She told me that she asked Dr. Cheerva if she could possibly try and figure out how much time we have left with Ambrosia. A lot of tears were shed and we talked about a lot of hard things while we waited. Dr. Cheerva came in and said that while only God knows when Ambrosia will pass, she thinks we only have a week or two left before she passes.

She explained that what she had to tell me next was hard for her to say but she needed us to know that at this stage Ambrosia will be considered DNR or Do not resuscitate. She said that it was likely Ambrosia would encounter an infection if the tumors persist and collapses one of her lungs. It would be easy for an infection to present itself. She asked if we would be comfortable only treating the fever that would accompany the infection rather than treating it with antibiotics as doing so would only delay things by hours or a day. She explained they would do everything in their power to keep Ambrosia comfortable and keep her pain under control. We no longer have to go in to OMO for anything if we don't want to. No more labs need to be drawn. We stopped a lot of her medication except for pain medicine and nausea medicine. If I feel Ambrosia needs to be assessed I can call Kourageous Kids who will send their nurse out to look at her. The nurse will then talk to Dr. Cheerva and adjustments will be made if needed to keep her pain under control.

In addition to the pain medicine, Ambrosia now is on oxygen at home to help her breathing. We were brought a machine for home and also a portable tank to bring with us as we go places. This is a new adjustment for us and new equipment to learn about but it is definitely necessary in keeping Ambrosia comfortable.

All of this has been a lot to take in. We knew our time was limited but I do not think we were prepared for the news we heard today. My posts on here and on Facebook may become even more sparse than they have been lately as we spend as much time together as a family as we can. Please keep us in your thoughts and prayers. I also ask that unless you are an oncologist you do not suggest a miracle procedure that you know of that will save Ambrosia. Her doctors are remarkable and if there was a cure for her RARE (and I stress...RARE) cancer they would not hesitate to implement it. Thank you for your respect in this matter.

On Monday, we went back to OMO to have Ambrosia's numbers checked. Dr. Cheerva saw us and we talked a little about still doing the irinotecan chemo that goes through her port. At the time Dr. Cheerva said she likes to give chemo at least 2 rounds before deciding it's not working. We planned to have numbers checked again on Thursday and possibly starting the irinotecan back up next Monday. Ambrosia's numbers on Monday were good.

After leaving OMO, I contacted the nurse from Kourageous Kids to tell them we were home for the rest of the day so they could see us. The nurse and the social worker came to the house to see us. It was only an initial meeting as they were still waiting on the medical records from the hospital for Ambrosia so we could be officially put on the program. They explained that we could call anytime and someone would come out to our house if we needed them. They said to ask for any help we might need, no matter how silly the request might seem. They also said they would come out and see us as many times as we needed them to, even if it was twice or more in one day. They can also come out fewer times. The only requirement is Ambrosia needs to be seen every 14 days at the least.

Tuesday, I got word that our wish from A Special Wish Foundation, Inc. had been granted. We will be picked up in a limo tomorrow morning bright and early and taken to the Louisville Zoo. There we will be meeting the Zoo director and be given a behind the scenes tour before the zoo opens. We will have the entire zoo to ourselves! They will have their staff photographer on hand to take pictures so that we don't have to. Afterwards, the limo will be taking us to Cracker Barrel for breakfast. I know we will have a great time and it will be a wonderful family memory.

Wednesday, the social worker from Kourageous Kids came back to see Braeden. She also brought her intern that is working with her for the summer. The intern played with Braeden and his toys while I talked to the social worker. She explained that we are eligible for 13 months of services after Ambrosia passes, but she said really they will be there for however long we need them to be. That was good to know. She told me about a fishing trip they will be having next Tuesday that she hoped Braeden could attend during the day. I know he would enjoy that especially since she said where they fish the kids sometimes catch upwards of 30 or more! We talked some about having a quilt made out of Ambrosia's clothes for me and also how Braeden recently became attached to a bear. I think we may make a Build a Bear and dress it in one of Ambrosia's outfits for him so that he will have a piece of his sister with him all the time. The social worker explained they have 500 volunteers in this county alone and if there was anything we needed they would find a way to get it done. I know having this kind of support will definitely be a blessing.

Today, we went back to OMO to check numbers again. Ambrosia's platelet count had decreased some but not enough to need a transfusion. Dr. Cheerva was there to see us again today and after pressing on Ambrosia's belly she is fairly certain the tumor on her liver has gotten bigger. I feel it has too, as Ambrosia's belly has looked a little more distended than usual. Dr. Cheerva then said she wasn't sure she was comfortable going forward with the irinotecan and asked if Wes and I had discussed it. We had and we are okay with only continuing the seraphanib that I have been giving her at home, which is an oral chemo. Dr. Cheerva said she doesn't want to unnecessarily put Ambrosia through chemo that will only lower her counts and put her at risk if it is not going to have any affect on her tumors. It would only mean more trips to OMO, blood transfusions, platelet transfusions, and a lot of hassle when we could be at home spending quality time together. We decided to revisit the subject on Tuesday next week when we go in for them to check her numbers. 

After coming home from OMO, we had a package from A Special Wish Foundation, Inc. It had T-shirts for us to wear tomorrow on our special outing. It had a lot of toys for Ambrosia and Braeden along with a check for us to spend at the zoo on souvenirs. There was a letter explaining our entire day, along with letting us know that Cracker Barrel would be taking care of our meal as well. I am sure I will have a nice long entry to write about our day tomorrow and how special it was for us. Right now I should go to bed as the limo will be picking us up at 7:45 am! 

After being called in yesterday to go over Ambrosia's latest CT scan results, I knew the news wasn't going to be good. I just had a feeling. After we got to OMO and walked in, the first person I saw sitting out at a computer was the child psychologist. She is rarely over at OMO and somehow I knew she was there for us, which further indicated the news we were going to hear was not good.

Unfortunately the tumors have doubled in size since the last CT scan in April. This news was extremely hard to hear. They wanted to know our feelings on continuing with the IV chemo and the oral chemo and whether we thought it would be beneficial in any way. As of right now it is too early to tell how much time Ambrosia has left. When it gets closer to time, her body will give the doctors signs and they will be better able to estimate how much time we have left with her. Dr. Lucas also asked if we had given any thought to where we would like Ambrosia to be when she passed, whether at home or in the hospital. This is not something we have previously discussed.

They took some blood from her to check her CBC and numbers and we talked for awhile with the child psychologist. On Monday, they had put in a referral for Courageous Kids to get in contact with us. This is the children's division of Hosparus locally. They have not gotten in touch with us yet and I am to call the nurse practitioner if they have not done so by 2 pm today. They will provide 13 months of services to our family after Ambrosia passes. This is particularly important to me for Braeden to help him understand and cope with the loss of his sister.

Last night while getting Braeden ready for bed, I told him to go tell his daddy good night. Wes was holding Ambrosia and must have been visibly upset. Wes then told Braeden what was going on with his sister. He, of course, was upset and silently shedding tears. I asked him if he knew what heaven was and if sister became an angel what that meant. He said he knew it meant she died. We explained the doctors had been trying really hard to fix how sick she was but they were unable to do anymore. That is the hardest conversation I have ever had to have and no mother should have to explain to one of her children why their sibling won't be around for very much longer.

At this time we ask for your prayers and support as we have a lot of hard decisions to make regarding Ambrosia. I am particularly struggling today as I feel like I am getting sick on top of everything else going on. I also have a worry knot in my stomach that I am sure will not be going away for awhile.

Thank you to everyone for your support and prayers.

Since my last update, Ambrosia finished her IV chemo and started on the experimental oral chemo. On Tuesday May 28th, Ambrosia had surgery to put her new port in. When we got upstairs to be prepped for surgery the surgeon came in to see her and was concerned a port would be too big for her. So there was a little delay as he got in touch with Dr. Cheerva to make sure it was what they wanted for her to have. Once that was cleared up, the surgery went off without any problems.

We stayed in the hospital until Friday May 31st so that Ambrosia could finish her antibiotics. After being released we were able to stay home over the weekend and enjoy some family time. I noticed Ambrosia was beginning to grunt a little more even after having pain medicine. We had an appointment at OMO (Outpatient Medical Observation) on Monday afternoon for them to see her and check numbers.

Once we finally were put in a room at OMO, Dr. Lucas and the nurse practitioner came in before any labs or anything were taken. I explained how Ambrosia had been grunting a lot more even after pain medicine. Dr. Lucas examined her and decided she needed a chest x-ray that day. He also decided that the CT scan they had scheduled for June 11th was too far away and needed to be on Tuesday or Wednesday of this week.

While we were waiting for labs to be taken and orders to be written, the child psychologist came over to see us. She said she had some good news for us. One of the Child Life team members had gotten a hold of a group in Ohio that deals with granting wishes. This group grants wishes to babies, which is something Make A Wish does not do. She told them about Ambrosia and how we would love to be able to have some time together as a family to build some memories. They wanted to make sure this was something we would be interested in. I, of course, said yes. They are not sure yet exactly what we may be doing but the group should be in touch with me soon.

After labs were taken, it showed Ambrosia's liver function was a little high so she was taken off one of her daily medications. Then we were sent to get her x-ray. Yesterday, Ambrosia had a CT done. She was grunting a lot still and they were a little concerned about sedating her. They decided to have people from anesthesia there with her in case they were needed if there was difficulties. Everything went fine and the scan was done.

Originally we were not due back to OMO until Thursday, but this morning I received a call from the nurse practitioner to see if we could come in today as they would like to go over the scan results. I am anxious about these results. As always, keep us in your thoughts and prayers.