Ambrosia ended up not having surgery today. They weren't going to be able to fit her in until 5 pm, so Dr. Lucas decided to have another peripheral IV put in but this time put it farther up her arm instead of in her hand. They made sure it had good blood return before starting chemo and once chemo was started the nurse checked it every so often to see if it had moved or was seeping out of her vein. There were no problems and Ambrosia was able to get her chemo.

Unfortunately it seems the IV had since moved and is no longer getting good blood return. This means tomorrow the IV team will have to come put another peripheral IV in on her other arm to be able to administer the chemo for tomorrow. Then on Monday she will receive the new experimental chemo which is an oral medication so there will be no issues giving that.

Then the plan is to still put in a port on Tuesday. I am dreading having a port a little as it is something new. I don't know any of the care that is involved with a port. All I know is I know when one is being accessed because the kids end up screaming. I don't know how Ambrosia will react to one but I hope she tolerates it well.

A couple of weeks ago I posted a link to an article on Ambrosia's Facebook page about a doctor in Boston starting research on rhabdoid tumors. This morning I contacted the doctor in charge of the research to see if he was wanting to know patients who have rhabdoid tumors. I told him about Ambrosia and where we are in her treatments and care. He responded fairly quickly and thanked me for getting in touch with him and said he would be happy to discuss Ambrosia with her oncologists or me by phone. I passed on his information to the nurse practitioner to share at their afternoon rounds. They are going to be getting in touch with him to see what information he may have to help regarding Ambrosia and to share her history with him in the hopes that it may help his research. If doing this in anyway helps another family not have to go through this and hear there isn't a cure then it is worth doing in my opinion.

This morning Dr. Lucas made sure I was okay with starting the chemo today even though she had an active infection. He said he didn't forsee any issues but it couldn't be guaranteed. We are all anxious to start chemo without anymore delays. Some time passed and the nurse practitioner came in with a dilemma. The IV line they put in Ambrosia's hand couldn't be used to administer the chemo. There was risk involved if the IV wasn't completely inserted in a vein and having the chemo seep out into other areas and become an irritant. The plan then became for the IV team to come and put in a PICC line that would be threaded through a vein and up Ambrosia's arm. This line they could administer the chemo and also get her normal blood counts from. If they weren't able to do it today then they were going to do it tomorrow.

Unfortunately there was an issue with getting everyone assembled to be able to get the PICC line placed. The plan now is to put a temporary central line in that Ambrosia had when she was first diagnosed that goes under her clavicle up by her shoulder and neck. This is temporary and can be pulled out at the bedside. This way chemo could start once it was placed. The surgery is scheduled to take place tomorrow for this line. They would be able to start chemo after it's placed and again on Sunday. Then the experimental chemo would be administered on Monday.

Tuesday, Dr. Lucas decided that Ambrosia will have a port placed. This is different from her broviac line. Ports are less likely to get infections which of course we want. This will be a new experience for us as I know a lot of kids are scared to have their port accessed. We will face this challenge head on though and I will learn even more than I have already.

I am going to end this entry with thanks. Thank you to everyone for your support. It means a lot to our family. We appreciate everyone that has taken an interest in Ambrosia and her story.

Thursday of last week we went back to OMO not sure if we were going to be able to start chemo or not. We got there and I made sure the nurses knew that if we were starting chemo I needed to know as soon as possible because I would need to be able to leave to get Braeden or make arrangements for someone else to be able to. They got things moving pretty quickly and the nurse practitioner came to see Ambrosia. Unfortunately, Ambrosia still tested positive for the metapneumo virus and they decided to give her some IV medicine to help her fight it off. They decided to not have us come back to OMO until Monday. At which point we would probably be starting chemo if Ambrosia looked like she had improved.

On Monday, we got settled in to OMO again and I emphasized how I needed to know things as soon as they could tell me. Ambrosia's cough had pretty much stopped and her nose wasn't as runny either unless she cried. The nurse practitioner and Dr. Lucas came in to see Ambrosia. Dr. Lucas decided she looked good enough to start chemo that day but she also needed blood first. Luckily, everything was done in time to be able to get Braeden from school. While we were there blood cultures were taken from Ambrosia's line because it had been 2 weeks since they found her other infection and they wanted to make sure she was still clear. We went home not thinking much of it and ready to return on Tuesday for more chemo.

Around 2:30 am Tuesday morning, Ambrosia woke up screaming. This is not necessarily unusual since she is teething but I had given her pain medication before bed and it wasn't quite time to give her more. I knew something wasn't right then but there wasn't anything I could do except give more pain medicine when it was time since I knew we would be at OMO in a few short hours. We made it to OMO and the nurse was told to take blood cultures again. She was confused as to why because some had just been taken. That's when I was told that her blood cultures from the day before had come back positive for an infection and we were going to have to be admitted.

A short while later the nurse practitioner came to see us. She said she was so glad that we were already scheduled to come in that day because the infection that Ambrosia tested positive for was one that could turn bad very quickly and even be fatal in some cases. The microbial team that's in charge of seeing if things grow from the blood cultures had called her phone in the middle of the night and left a message instead of calling the attending on call and talking to a live person. They had already been scolded and told under no circumstances was something like that to happen again. They started antibiotics immediately and we settled in at OMO to wait for a room to open up on 7West.

While we waited, Ambrosia was breathing particularly fast and she also was not calming down again and was upset. The nurse practitioner ordered some pain medicine for her and they also started her on some oxygen as it looked like she was struggling some. They ordered for her to have a chest x-ray as well.

After some time we were able to head over to 7West. Once over there and some time had passed the x-ray team came and did the chest x-ray. The nurse practitioner came by to tell me that the chest x-ray showed some fluid in her lung. Ambrosia was still on oxygen and they were monitoring her heart and how much oxygen she was getting as well.

The next day, Dr. Lucas came to see Ambrosia. He told me the tumors that were clustered on her left lung were substantial and gestured with his hands the size they were. After delivering that news he asked what our wishes were with concerns to Ambrosia and how they should proceed should things get bad. Did we want them to do everything they could, meaning intubate and be transferred to the PICU and be hooked up to a lot of things or did we not want to see her having to be hooked up that way. Those weren't his exact words, he said them a lot better than I am explaining it but it wasn't something I was expecting to hear. We know Ambrosia's cancer is not curable at this point in time, but everyone is still trying to do everything they can to continue to find ways to treat her. It was hard to hear and definitely hard to think about. He explained we could always have them do everything in their power first to sustain her life and then reassess later if we thought it was doing more harm than good. He said he would let Wes and I discuss it and let them know what our decision was.

Our nurse came in awhile later and expounded upon what Dr. Lucas had said. She explained at any point we could change our minds and things would happen in a snap. No paperwork would need to be signed. The doctors would follow our wishes no matter what we decide, even if we changed our minds. That was good to hear.  Wes and I briefly discussed what we wanted to have happen. It definitely is not an easy discussion to have.

Today, Dr. Lucas came in early to see Ambrosia. He told me that her cultures were still coming back positive even though she'd been having antibiotics. He thought it was best to have the line pulled and have a peripheral IV put in her hand so we could move forward with chemo on Friday. Ambrosia was doing better and he said she no longer needed to be on oxygen.

Awhile later the nurse practitioner came in and we had a brief discussion. She explained what Dr. Lucas had already told me. She said starting the chemo tomorrow could lead to further complications because they were starting it while Ambrosia already had an infection. The chemo would lower her numbers and her ability to be able to fight off more infections, which she might be prone to because of the chemo and numbers being low. However, they are anxious to start because Ambrosia's disease is progressing. There of course is no guarantee the chemo will have any affect on her tumors but it is something worth trying. She asked me if Wes and I had a chance to talk about what Dr. Lucas had talked to me about yesterday. I told her we had briefly and I decided what to tell her then. We are going to move forward with them doing whatever they can to sustain life first and then reassess later if we feel Ambrosia is not getting better, then we will make the decision to let go. They want to make sure they know our feelings on the matter since giving this chemo with the infection is risky because of the reasons I have already said.

Awhile later our nurse came and said that Ambrosia would be having surgery sometime in the afternoon whenever they could work her in. She mentioned that the nurse practitioner had talked about having a team come talk to us about our options for Ambrosia. We went down to get Ambrosia's NJ tube placed before her surgery. While we were down there, her nurse got a call that Ambrosia's cultures from today had already come back positive again so it was good that we were going to get her line removed.

The child psychologist came to see me before Ambrosia went to surgery. She wanted to talk some more about our decision to see where I was at emotionally. She explained there is a Hearts and Hand palliative care team here at the hospital that can start to be involved with our care. They will get to know us, Ambrosia and Braeden and go over every option we have and be a support system for us. She also said they might mention Hosparus for when we are outpatient. She said it might be a good idea for Hosparus to get involved now so they also can get to know our family and build a relationship with us. This will be especially good for Braeden as he can get to know them and if Ambrosia is taken from us they will be able to provide services for him and us for at least a year after. This has been a big concern for me as I don't know how a now 6 year old would process his sister leaving us. It will be hard enough for me to comprehend, let alone him. The team from the hospital should be getting together with us soon.

This afternoon Ambrosia was taken up for her surgery. It was fairly quick as all that was being done was her line being taken out and an IV put in. Everything went great as expected. Tomorrow they plan to start chemo and again on Saturday. Then on Sunday, they will be starting the experimental chemo. We will of course be kept inpatient during this process as Ambrosia still has her infection and they want to keep a close eye on her. Before we are discharged Ambrosia will have to have another surgery to place a new broviac line. For now they are letting her body have a chance to get rid of the infection as they were able to pinpoint even further the specifics of her infection. They started a new antibiotic today to help rid it from her blood stream.

As always keep Ambrosia and all of her family in your prayers. We appreciate everyone's support and prayers no matter how big or small. I know more and more people are hearing about her story and I am finding out new connections to her everyday from people we don't even know. Continue to share this blog and her Facebook (Angels for Ambrosia) page freely. There can never be enough people praying for her.

We made it home one day from the hospital for Ambrosia's infection before we had to go back to the hospital. Ambrosia was crawling and crawled a little too far from her feed pump. She subsequently pulled loose the tape that was holding her tube on her face off and then pulled her tube almost completely out. I broke down at that point because we had just made it home the day before! I called the nurse practitioner and they had me bring her in. They wanted me to go to OMO first to make sure her platelets were good before sending us to get the tube replaced. Ambrosia's platelets ended up being fine and we went to get her tube replaced. She was able to get her tube replaced with no problems and because she's a champ, no sedation as always.

Friday, we went back to OMO for them to check her out again. Ambrosia had developed a little bit of a runny nose and cough at this point. I assumed it was probably part of her infection she was being treated for. To be cautious they took a swab of her nose to send off. All her numbers came back good. They told us to come back on Monday to be seen again and the plan was to start outpatient chemo on Tuesday.

Saturday, we had a joint birthday party for Ambrosia and Braeden. Everything went well. Braeden of course loved opening his presents and helping Ambrosia to open hers. It was nice to be able to spend time with family and see everyone.

Monday came and we headed back to OMO. They took blood again of course to check Ambrosia's numbers, which came back good. Dr. Cheerva had mentioned the outpatient chemo normally was a 5 day run but since Ambrosia was newly off transplant they were only going to do 3 days. The plan was to start chemo today.

We arrived bright and early this morning to register and were the first ones there, which guaranteed us a room without too much wait time. While we were waiting a mom and daughter came in to register. After they registered we got to talking. She asked about what kind of cancer Ambrosia had and I explained where we were with treatments and how rare hers was. She said her daughter had a very rare form of leukemia. The prognosis for her daughter was not very good in the beginning, but now it was 3 years later. That gave me some hope that Ambrosia can fight this for a long time, maybe long enough that a cure will be found for her cancer. There's always hope.

After a little bit of a wait we were told we could go over to OMO. They took labs again to check her numbers and I settled in to wait for chemo to start. It started to get later and later. 2 hours passed and I finally poked my head out of the door to see what was going on and why nothing had started yet. One of the nurses caught me and told me the nurse practitioner had just got there and was on her way in to see us. The nurse practitioner came in and said that the swab they took of Ambrosia's nose the other day came back showing she had a virus. Metapneumovirus to be exact. So we would not be starting chemo today. They reswabbed Ambrosia's nose and we go back to OMO on Thursday. They will have the results of the swab then and will take a look at her again. If she looks good and the swab comes back negative they will start chemo. Otherwise it may be delayed until next week.

Because Ambrosia is newly home from transplant they are being extra cautious. If they were to start this outpatient chemo while she has this virus, Ambrosia could get very sick. Even though her numbers are good, her immune system is not back to normal. It won't be back to normal for 6 to 9 months. So while this is a set back it is better to be cautious.

Sunday, Ambrosia felt warm to me all day. I kept taking her temperature under both her arms checking to see if she was running a fever. She was also a little bit whinier than usual and I could tell by looking at her that she didn't feel too good. After taking her temperature multiple times during the day, we finally hit the mark under both arms that made me call Kosair. One arm said 101.1 the other said 100.7. We are supposed to call when we hit 100.4. Of course they told us to come in. I packed up enough clothes for a weeks stay and some toys as I wasn't sure how long our stay would be this time.

When we got there they came and took blood cultures from both her lines. This was a little after 5:30 pm. They checked her out and started her on an antibiotic immediately. It's one they always start with until they know exactly what type of infection it is. By 1 am the blood cultures had already come back positive for an infection. It was a strep infection. Ambrosia had a strep infection previously in December. We were unable to go home on antibiotics with that infection because the medication they tried to send us home on Ambrosia had a reaction to. So I wasn't too hopeful that we were going to get out soon.

I had planned to have a birthday party for both Braeden and Ambrosia this coming Saturday the 11th. I now had to inform people that it might be delayed. Such is life with a child that has cancer. It's hard to make plans because anything can come up!

Dr. Lucas came to check on Ambrosia yesterday and said that her respiratory rate was up a little and he wanted to have a chest x-ray done as a precaution. Her respiratory rate means how many breaths she takes in a minute. He also said that her blood cultures from that morning had already come back negative. That put us one step closer to going home. All they had to wait on was sensitivities to come back from the infection so they would know what kind of antibiotic it would respond to. Awhile later they came and took an x-ray of her chest. The x-ray showed a little haziness in her lungs so they started her on an extra antibiotic.

This morning Dr. Lucas came again and said that the haziness on her lungs could be from the infection she had, but it also could be walking pneumonia so just in case it was that they had started the other antibiotic yesterday. He also said they would be starting her outpatient chemo medicine soon. On top of that they were able to secure the experimental chemo medicine from the drug company. It was approved and everything for her to start taking. It's never been used in a human before so Ambrosia will be one of the first. Let's hope it shows some results. I am not sure if this experimental chemo is an outpatient medicine or inpatient. That is something I need to have clarified.

Our nurse today said that when they did rounds about Ambrosia she would try and push to find out when we might be able to go home. She came back awhile later to say that Dr. Lucas had said going home today was a long shot but that it was a possibility. We both thought it was definitely a long shot, I was just hoping we would be out before Saturday so we could move forward with birthday party plans. They were supposed to be checking for the sensitivities to make sure the antibiotic it said was one we could go home with.

Just a little while ago, she came in and said we were going home today! The antibiotic the infection showed sensitivity to is one Ambrosia has had before so we know she will not have a reaction to it. This is all good news! I am writing this from the hospital but we should be home this afternoon!

Yesterday we went back to OMO to check Ambrosia's numbers and to also see Dr. Cheerva to see what the official PET scan read was and if she was able to email doctor's across the country about Ambrosia. Ambrosia's numbers were pretty good still but she did need a blood transfusion. Dr. Cheerva said that she met with the tumor board where they discussed Ambrosia. Dr. Foley, one of the surgeons, took a close look at Ambrosia's CT scan and PET scan to determine whether or not surgery to remove the tumors was a possibility. This has been discussed before and the issue is always the recovery time from surgery before more chemo could be administered. They are all nervous about giving time for something new to grow while she is recovering. Dr. Foley said he could remove two of the tumors on the bottom of her lung fairly easily. She has a cluster of tumors towards the top that he said he could remove but until he got in there it would be hard to tell what exactly they are all attached to and how complicated it might end up being. So while it is possible, it is still something that is being put on hold for now.

Before I start this next part of news, let me first say how much we appreciate everyone's concern for Ambrosia and wanting to help with suggestions for her well being and care. We know it comes from a place of love and not wanting to see someone so small suffer. We have had several people tell us we should go to St. Jude's hospital. I realize this is a nationally recognized hospital as there are commericals about donating to them and a lot of people know the name. I can't help but get a little taken aback when people tell me we should just up and go there. It makes me feel like my husband and I aren't capable of making the right decisions for our daughter or that her current doctors are somehow lacking. I know this is not the intent but it is how it makes me feel.

With that being said, Dr. Cheerva did contact doctors at St. Jude as well as the children's hospital in Cincinnati. St. Jude is currently not conducting any studies for Ambrosia's kind of cancer. This means they would not accept her as a patient. They have no protocols or studies that would help her in any way. I think a lot of people are unaware that you just can't show up at St. Jude's and they will take you. Unfortunately it doesn't work that way. St. Jude's is no longer a consideration. *I forgot to mention that the doctor's that are treating Ambrosia have sent patients to St. Jude's when there has been a protocol or study being done there that they felt has been beneficial to the patient.

The children's hospital in Cincinnati also told Dr. Cheerva they were not doing a study for Ambrosia's kind of cancer at this time. They did suggest something that Dr. Cheerva had already thought about trying, which is an outpatient chemo medicine that Ambrosia has not had before. She said we could potentially start this chemo medicine within a week or week and a half once Ambrosia's numbers were stable from transplant. She would get this new medicine along with vincristine, which she's had before, for a total of 4 to 6 weeks. We would not have to be admitted during this time. It would all be outpatient. They would monitor her tumors with CT and PET scans every couple of weeks to see if any shrinkage and hopefully no growths occurred.

Dr. Cheerva mentioned she checked with the National Cancer Institute to see if there was anything that might be tried with them. She said there was one new experimental drug that isn't specifically for Ambrosia's type of cancer but it's possible it might have an effect on her tumors. She said normally in order for Ambrosia to receive that medicine she would have to go to a NCI hospital. She was going to try and contact the drug company itself to see if they would be willing to let her have the medicine without us having to go elsewhere. She said she's had success with this for another patient a couple of years ago. Ambrosia would only need a "sprinkle" of the medicine as she is so small, so she is hopeful this will be in our favor in obtaining the medicine.

Dr. Cheerva said that having an Allo (donor) transplant was not off the table. As we have said before, it has never been done for her type of cancer. There are no studies on it for her type of cancer. It would be totally experimental and there is no written protocol for it. For now it is being put on the back burner until Ambrosia has fully recovered from this transplant and we see how she responds to the outpatient chemo and hopefully the new experimental medicine. Of course the hope is that her tumors respond and shrink. It is still a possibility, however we also have to understand that we are currently under palliative care. There is no cure for Ambrosia's cancer. Miracles do happen and Ambrosia very well may be one.

palliative  pal·li·a·tive (pāl'ē-ā'tĭv, -ē-ə-tĭv)
adj.
 Relieving or soothing the symptoms of a disease or disorder without effecting a cure.