Friday came and it was time for Ambrosia to get her stem cells 'transplanted' back to her. It turned out, after checking, that they would have to split the transplant into two different days as Ambrosia could only have so much of the preservative they put in the stem cells at once. It was pretty anti-climatic as far as the actual transplant goes. The stem cells were in a big syringe and they pushed them into her line very slowly. They checked her vital signs every 15 minutes the first hour and then even 30 minutes for the next hour. Everything went fine.

I had forgotten they had told me that there was a distinct smell associated with the transplant. As soon as I got near Ambrosia I could smell it. It definitely smelled like cream corn. My husband thought it smelled like I opened a can of tomato chunks. I actually could smell both smells. It was pretty strong and made me gag a few times. By the end of the night the smell had gone down a lot.

Saturday, the process was repeated. There was no major issues with anything. We had been giving Ambrosia some pain medication at night to help calm her down enough to sleep and she had slept better both Friday and Saturday night. Ambrosia has had to have a platelet and blood transfusion as her numbers have dropped. Unfortunately because her numbers have dropped she has started to be uncomfortable, and because she's a baby she can't tell us what is bothering her.

Today Ambrosia has been pretty inconsolable. They decided because they have been giving her pain medication often enough that they hooked her up to a continuous dose of pain medicine this evening. There is a button that I can push attached to the pump to administer more to her if I feel like she needs it. It also records how many times I push it to let them know if they need to up the continuous dose. Most of today has been spent holding Ambrosia. Whenever I've had to lay her down to take a break to use the bathroom she has screamed. She has slept most of today and only right now has she been calm enough to sit in the crib and play. She looks like she is about to go to sleep sitting up. Hopefully with the pain medicine pump, tomorrow will shape up to be a better day.

Tomorrow Ambrosia will be getting her stem cells transplanted back to her. It's supposed to happen at around 10 am. It usually only takes about a half an hour for them to give them back to her. It will be like when she's gotten platelets. During this time there will be a nurse and a nurse practitioner in the room monitoring for any reactions Ambrosia might have while receiving her stem cells. They don't anticipate any problems since these are from her and not a donor which is riskier.This week has been pretty good. Ambrosia hasn't been quite as fussy as she was over the weekend and has been sleeping better during the night. We've had a speech therapist come to the room twice now to help work with Ambrosia to try baby foods. Ambrosia actually ate some puree bananas without making any faces and she also ate some puree mango today. I was pretty impressed that she is more willing to try things now even after the high dose of chemo. Physical therapy has also come twice this week to just work with Ambrosia. They don't feel she is behind but they still want to come and work with her to be able to observe her in case she does fall behind at some point.

Yesterday the art therapist came to the room and asked if we wanted to try to see if Ambrosia might want to fingerpaint or color. I hadn't tried either with her and figured we might as well. She brought us some paint, markers, crayons, paint brushes, paper, and even window markers! We have a lot to help pass the time while we are here. I plan to try and see if Ambrosia would like to get a little messy and fingerpaint this afternoon after her nap.

When the art therapist was visiting us she told me about a mom's dinner they have the 4th Wednesday of every month for mothers of cancer patients. I had never been to one as our admissions have never fallen at the end of the month. Wes and Braeden were coming to the hospital after school to visit and there was also a Sib Stars meeting for Braeden to go to. I took Braeden to his Sib Stars group and I went to the mom's dinner while Wes stayed in the room with Ambrosia. I was a little late as I was visiting with Wes and Braeden first before going so I missed every one else's introductions and the intro about their kids and what kind of cancer they are fighting. I told them about Ambrosia and where we are in our journey to get her cured. There were two other mom's there who are also here for transplant. We will be seeing a lot of each other during the weeks we are here. It was nice to get out of the room for a little bit and there was also a massage therapist there of which I took full advantage! I was ready for a nap after that massage.

Ambrosia has been getting antibiotics for a few days as one of the blood cultures they took for her showed some bacteria growing. I haven't been told yet if they have identified what it is but she has been getting vancomycin which is one they give automatically until they know what they are dealing with. She has not run a fever since this past weekend She has been having some issues with gagging. They had started her feeds back up but started them very slowly. They upped them yesterday only by 2 mls and since she has been gagging a lot. Dr. Cheerva checked in on her awhile ago and said they will go ahead and drop her back down by 2 mls to see if that helps. She said if that doesn't work and she is still gagging they will go ahead and stop her feeds. She is still breastfeeding fine and they have started her on TPN , which provides her with the nutrients she needs.

I need some prayers and thoughts for Braeden as I can tell this time away is taking some toll on him. He doesn't understand why he's not allowed to spend the night up here with me which he has done in the past. It is against the rules this time around. He has been a little more sensitive then usual when he has been up here to visit and it's time to go home. That of course has been hard on me to see as well. Keep my husband also in your thoughts and prayers. He has been doing a wonderful job of taking care of Braeden and the house while I've been gone but I know it's been hard on him as well.

Dr. Cheerva said that we will do a CT scan in about 3 to 4 weeks after the start of her chemo last week. She said that we don't want to do it too early as we don't want to see that the tumors haven't shrunk. We have to give the chemo plenty of time to do what it is supposed to do. We still have a long road ahead of us and I have been warned that Ambrosia will get really sick, but we will make it through.

Today is the last day they will start her high dose of chemo this afternoon. It will run until tomorrow afternoon. Then on Friday she will get her stem cells back, which is referred to as her transplant.

Ambrosia's chest x-ray apparently showed signs of pneumonia or something being caused by the tumors on her lungs. They are going ahead and treating her as if she has pneumonia to be safe, but her blood cultures so far have not come back with anything growing positive. I am going to take this as the chemo is doing it's job and shrinking those tumors and that's why she has been feeling puny. Her fevers haven't lasted long and not gotten high enough in my opinion for it to be pneumonia.

They tested her urine again to check her kidney function and today her test came back with only a 70something score, so they will be adjusting her chemo medicine. I just hope with all the adjusting they are having to do that the tumors are still going to respond and shrink more than the 25% we need them to!

Last night, her nurse came in to give her the medication she gets at 8 pm only to discover that her NJ tube was clogged! She had not been on feeds at all yesterday and only had been given medication through the tube. Our nurse last night thinks that maybe she wasn't being flushed with enough water behind her medication for it to go all the way through and maybe that caused the clog. We tried the normal methods of trying to get it unclogged by trying to get some Coke in and then the little concoction the pharmacy has to put in too. Neither worked so this morning we had to go down to the fluoro x-ray department and get it replaced. Ambrosia is always a trooper with this and never has to be sedated. She's not happy about it and cries while they do it, but she stays relatively still (with help) and doesn't fight too much while they place the new tube. She's such a trooper! One of the technicians gave her a big stuffed bunny for being so brave. That's the second stuffed animal she's gotten today as a volunteer gave us a stuffed puppy earlier. I am sure there will be no shortage of gifts during our stay again this time.

I received several more Cheer cards today! Thanks to everyone for sending them. It's nice to read them and know how many people are thinking of Ambrosia and our family.

We've had our ups and down already with this high dose of chemo. Ambrosia hasn't quite been herself since 2 nights ago. They tried giving her plenty of different medicines to help keep her comfortable. Last night however, Ambrosia didn't go to sleep until 3:30 in the morning and only slept until a little past 5:30. At that point the nurse came in because she could hear Ambrosia was up and crying. She knew we had only gotten a couple of hours of sleep and decided to go talk to the nurse practitioner about other things they might could do to help Ambrosia be more comfortable. The nurse hooked her pulse ox up to her toe to check to see what her pulse was and also how much oxygen she was getting. Her pulse was really high which usually indicates pain or discomfort.

The nurse practitioner came to check on Ambrosia. She looked at her hemoglobin levels for today and they were low enough she decided to give her some blood. She also decided to have a chest x-ray done to see  if anything was going on with the tumors on her lungs that could be causing problems. They gave her some more pain medicine and I held Ambrosia with her head on my shoulder and we sat and napped for a short while. The doctor then came to see us and decided to change her acid reflux medicine to something stronger as Ambrosia had still been having issues with vomiting. So far today she has not thrown up.

A short while after the doctor left, the nurse came in to do vitals check and Ambrosia was running a fever of 100.5. Yesterday she kept getting close to running what they consider a fever but it was going down on it's own after a short time. Today however they went on and got blood from both of her lines to check for infections. I should know more tomorrow whether or not she has an infection. Needless to say the fever made her act even less like herself.

I haven't heard back today about the chest x-ray but I am assuming no news is good news. They have put her on a schedule for certain medicines that seem to have helped her be more comfortable and right now she is acting more like herself. So hopefully being able to get these medicines in her system will help keep her acting normally. We have one more day of chemo to go. Then she will have a break for 3 days. After that she will be given her stem cells back. We still have a long road ahead so keep the prayers coming.

We have gotten several Cheer cards from people. We appreciate them! It's kind of like getting mail everyday in the hospital. Something to look forward to. For those who would like to send one we are at Kosair Children's Hospital in room 730. Put Ambrosia Hopper as the patient.
If you would like to send a Cheer card go to this link: Cheer Card

*I knew I would forget some things as so much is going on, so here is something I forgot to mention. Yesterday the urine they tested for Ambrosia's kidney function was only 80something which meant they weren't able to give her a full dose of chemo. Today however, her kidney function was back up to 100! So she was given the full dose again. She has been more like herself tonight and is actually sleeping. Fingers crossed she continues to feel okay!

We got up really early on Thursday morning to come register to be admitted for our high dose of chemo with stem cell transplant. We were able to register with no issues and made our way up to 7West. We are currently in the back where the transplant rooms are, but unfortunately they are the smaller rooms. One nurse mentioned in May these rooms will be renovated like the rooms at the front, so hopefully they will be able to make them a bit bigger.

We were greeted by our 2 nurses that would be taking care of us and got settled in to our room. Awhile later the nurse practitioner came to see us. She said that Ambrosia's last GFR test on her kidneys showed they were functioning at a 91 out of 100. That is still a normal range, however the protocol for the high dose of chemo meant they couldn't give the full dose that they wanted. They wanted to put a catheter in so they could collect some urine to check the kidney function again. This meant putting the chemo off for a day.

So yesterday ended up being an easy day. We had a lot of visitors, including Child Life, the child psychologist, and physical therapy. Child Life told us about a new program called Beads of Courage. For everything Ambrosia has done she gets a different bead to represent it. Since we of course had been diagnosed in October she had a lot to catch up on. The Child Life person asked us to estimate how many times different things may have been done so she could go start our necklace. Ambrosia has 6 big clay beads that represent 100 things each that she has gone through since diagnosis. She has 6 star beads to represent surgeries (which I think I estimated wrong and she's only had 5! oops!). There are 3 beads with hearts on them to represent the 3 times we have been admitted to the ICU. One bead is a head and it represents hair loss. There is a dark green bead that represents when they collected her stem cells. There is a yellow bead to represent our stay overnight last night. And today the chaplain checked in on us and gave us a bead to represent his visits.

There is a daily bead journal for me to check off things that have been done each day so we can get a bead to represent it. At the end of treatments we will have a cool way to show people all that Ambrosia has gone through and what each bead means. Between yesterday and today we have 5 new beads to add.

Today the nurse practitioner came to see us and said that her kidney function had risen but to only 97. They decided even though it wasn't the 100 or better score they wanted they were going to go ahead and start with the full high dose of chemo because they didn't want to delay treatment anymore. So around 1:40 this afternoon her chemo was brought in and was started. So far Ambrosia hasn't had any issues. They gave her Zofran before they started to help curb any nausea that might develop but she will still likely get sick at some point during this treatment. I just have to let them know and there are other medications they can give to help keep her from throwing up.

Her chemo will run for 4 days. Then for 3 days she will have a rest. Then they will transplant her stem cells back to her. After that it will be watching her and making her as comfortable as possible as her numbers drop to zero and stay there for a couple of weeks. Once her numbers are back up and stable we will be able to leave. I do not know at what point during our stay they will do a scan to see if this treatment was successful. Normally a scan is done two weeks from the start of chemo. I would imagine this rule will still be followed but I can't be certain. As soon as I know when it will be I will be sure to communicate it as we will need a lot of prayers and thoughts for good results!

Ambrosia has a molar coming in that is making her a little cranky at times. Unfortunately she can't be given Tylenol to help with the pain because they don't want to mask a fever. I can give her some Orajel and hopefully that will help. It may be hard to differentiate her pain from her tooth and if she's feeling bad because of the chemo. We've got a rough several days ahead. Keep the prayers and thoughts coming. We appreciate each and every one!

I want to thank everyone who has left a comment on the blog or on our Facebook page recently with thoughts of encouragement or prayers. We appreciate them all. It's comforting to know there are so many people that care for Ambrosia and her welfare.

Friday night I received a call from one of the nurse practitioners at Kosair telling me they needed Ambrosia to come to OMO on Saturday to get some labs taken and to see Dr. Cheerva. So on Saturday morning we got up really early to get a couple of errands out of the way before we headed to the hospital. Once there, we were put in a room and the OMO nurse came and took blood from Ambrosia for her labs. They also needed urine samples for analysis and to test for a virus. We ended up being there for a few hours as there was a hiccup with their new electronic medical records system and having to wait for Dr. Cheerva to see us.

Once Dr. Cheerva saw us we were free to go. Later that day we headed to Frankfort to visit with family members as it would probably be the last family gathering before we headed in for the high dose of chemo. We had a nice dinner and visit with our family. Somewhere along the way that night one of the nurse practitioner's from Kosair called my phone and left a message. I didn't get it until late that night as my phone never registered a missed call. Ambrosia's ANC was low and they wanted me to give her neupogen shots Saturday and Sunday. Then they wanted me to come in to OMO on Monday before her ultrasound so they could check her numbers again.

Monday came and we headed to the hospital early in the morning. I registered Ambrosia for her ultrasound and then headed to OMO registration. After registering both places I headed over to OMO. In addition to getting her CBC, they were needing more urine from her, more blood for labs, and they also swabbed her nose. We put cotton balls in her diaper to catch the urine and I was on my way to her ultrasound appointment.

I got to radiology where they do the ultrasounds and handed the receptionist our papers and then sat in the waiting room. We were there for quite awhile before someone poked their head out into the waiting room and asked if anything had been said about sedating Ambrosia for the ultrasound. I responded that there hadn't been anything mentioned but that she was NPO if they needed to sedate her. Eventually one of the ultrasound technicians came out to talk to me. The ultrasound they were doing on Ambrosia was to get a baseline look at her liver and the tumor on it. She said it's something they do a lot before a transplant that way they can do another after transplant to see if there are any changes. She said that if Ambrosia were to get really upset and cry during it, they wouldn't be able to get some of the images they needed. I told her that Ambrosia would likely cry especially because she doesn't like to be held still. She told me they were trying to get in touch with one of the doctors to get an order written for her to be sedated. Awhile later she came back and said they got the order finally but after talking to sedation there was no way they could fit her in today. We would have been waiting too long and they didn't want Ambrosia to go too long without eating.

This of course was frustrating, especially if I hadn't also had to go there for OMO, it would have been a wasted trip. The technician said they would call upstairs and let them know it needed to be rescheduled and I was sent back to OMO. Once I got to OMO, I explained the situation. I was getting ready to start feeding Ambrosia when a nurse popped her head back in the room to tell me to wait as they were trying to figure things out. They got in touch with Dr. Cheerva who talked to the main doctor down in ultrasound. He said he would personally do the ultrasound without sedation. So I had to pack ourselves back up and head back over for the ultrasound. I was beyond frustrated at this point as I didn't want to head over there only to be sent back once again. Luckily, they were able to do the ultrasound even with Ambrosia being upset. They got as many images as they could. Since we had the CT scan within the last week they could also use it to compare how much hopefully the tumors will shrink from the high dose of chemo along with the ultrasound.

After all that we had to head back over to OMO because they still needed a urine sample from Ambrosia. Of course Ambrosia hadn't gone to the bathroom because she hadn't had anything to eat since 11 pm the night before. We settled in the room and the coordinator for transplant was there to go over what will happen during our stay. She had a paper explaining visitation limits and papers with the different chemo medicine Ambrosia would be getting. She will have a calendar for me telling me exactly what will happen on each days of our stay, including when Ambrosia's stem cells will be given back to her. We are going to have to limit Braeden's visits to the hospital during this stay, especially when Ambrosia's numbers drop to zero and stay there. I don't know exactly how we will work that all out but we will figure it out!

At first they were talking about having us come in today to get things started, but the transplant coordinator ended up telling me before we left that she would contact me later Monday to let me know exactly when we would be admitted. She called last night and said we will be admitted on Thursday and chemo will start that day. We have to kind of isolate ourselves for the next couple of days as best we can so that none of us are exposed to any illnesses that might delay things.

I will be posting an event on Facebook asking that on Thursday morning at 9 am everyone that can stop for a moment and either pray for Ambrosia or think positive thoughts for the outcome of this treatment to please do so.

The next several weeks will be hard. There is no way to know how Ambrosia will react to the high dose of chemo, especially since she has tolerated everything so well up until this point. She will likely end up very sick and it will be hard to see her that way, but if this treatment works and shrinks those tumors, I can endure seeing her sick knowing the outcome could save her life.

I have a lot to update so this entry will be a long one with important information regarding Ambrosia.

Friday last week we went to the clinic for them to check her numbers and also for them to tell us when her next tests would be scheduled, including her important CT scan. After the nurse took Ambrosia's blood they had us immediately go upstairs to the audiologist to try to have her hearing test done again since one of them couldn't be done last time. This time Ambrosia cooperated and we were able to get the necessary test done and it showed no damage so far to her hearing due to the chemo. After the hearing test we had to go back downstairs to the clinic and get her number results. Her numbers were still good. We were scheduled for her heart echo, EKG and CT scan on Monday with sedation for the CT scan.

Monday came and we went to Kosair after dropping our son off at school to get her testing done. We registered and went up to have her heart echo and EKG done. Ambrosia was very fiesty and did not calm down a whole lot during the heart echo. She usually calms down after being held still after a few minutes. She wasn't having any of it this time around. They decided after finishing the heart echo that they would wait to do the EKG after she was sedated and calm.

We headed down to sedation and got checked in there. About 40 minutes before she was due to go back to CT, they had to put a contrast in so they would be able to see the tumors. Once that time passed we were ready to head back to CT. Ambrosia had fallen asleep and I carried her down the hall to where they do the CT scan. Once I laid her on the table for the CT scan she woke up and at that point the nurse had to sedate her so she would be still for the scan. What they gave her worked and Wes and I had to step out while they did the scan.

After the scan we went back to our room in the sedation area and waited for Ambrosia to wake back up. While Ambrosia was still knocked out they did her EKG. They were in and out in less than 10 minutes. After about 45 minutes or so, Ambrosia woke up and we were free to go. We didn't know when we would know the results of her CT scan, but I figured we would know the results on Wednesday when we went in for her appointment.

Later that day on Monday after getting home from picking up our son from school, I got a call from the clinic asking if it would be okay to change the time for our appointment on Wednesday to later in the afternoon. Dr. Cheerva wanted to talk to us about the high dose of chemo with Ambrosia's stem cells. I said that was fine and wondered if they already had the results of the CT scan.

Tuesday came and proceeded like any other normal day. Around 8:30 that night I got a phone call from Dr. Cheerva. She told me she had the results of Ambrosia's CT scan. She said that unfortunately it wasn't good news like they had hoped. The tumor on Ambrosia's liver was stable. It had not changed sized from the last CT scan. Her right lung was still clear, but her left lung had tumors that had doubled in size. This meant the new chemo protocol from the last 2 rounds had not worked like they had expected. She explained they weren't giving up on her yet. She had already met with Dr. Lucas, another oncologist to talk about Ambrosia and options for moving forward. She said she wanted to tell me the news ahead of us meeting on Wednesday so we could process the information and gather any questions we might have to ask. Of course the CT results were not what any of us were hoping for and it was incredibly hard to hear. A lot of tears were shed on my husband and my part.

Wednesday, we got ready for our consult with Dr. Cheerva. We headed to the clinic where they took blood from Ambrosia to check her numbers. After doing that we headed over to register for OMO for the consult, as that is where Dr. Cheerva was meeting us. Dr. Cheerva started off showing us Ambrosia's most recent CT scan and pointed out the tumors in her left lung. She estimated there are about a dozen if not more on her lung. Some of them are bigger than an inch. She then proceeded to tell us our options as our next steps in treating Ambrosia.

One of the options is to give her some treatments only through OMO, which would mean Ambrosia would be home more. Another option was surgery. Before our meeting, Dr. Cheerva said all the oncologists, the radiologist and one of the surgeons met to talk about Ambrosia. They asked the surgeon if he would be able to remove the tumors surgically. He said yes he could. However he didn't know how extensive it would be until he got in there. Unfortunately to remove the tumors from the lungs and the liver it would have to be done in two separate surgeries. The surgeries could be done fairly close together with maybe a week between the two. The recovery time from both surgeries would be a few weeks. They would be concerned with how much time new tumors would have to grow and relocate to new places in Ambrosia's body during recovery. Ambrosia would have to be able to recover from the surgeries before they could start any treatments which is why they are concerned with taking that route. We don't want to end up with new tumors in new places.

Another option is to go outside of Kosair for what Dr. Cheerva said is called Phase 1 and Phase 2. She said the closest place would be Cincinnati for this treatment. It is basically experimental chemo medicines that haven't been tested yet. Phase 1 is trying a new medicine and then Phase 2 would be seeing what the highest amount of that medicine would be that the child could tolerate. Dr. Cheerva said they put the different kinds of cancers into groups, and that meant Ambrosia would be in a group by herself because there aren't even 10 cases of her kind of cancer worldwide right now. She said if we wanted to go that route she would find out the information about how to get us there.

Another option is to proceed with the high dose of chemo with Ambrosia's stem cells used to rescue her bone marrow. This was something that had been in the plans to do once her tumors were gone and not before. Dr. Cheerva said we could move forward with it however there are risks involved. The toxicity of the chemo can put Ambrosia at a higher risk for infections, rashes,  and mucoscitis. Ambrosia would likely get sores in her mouth which would deter her from eating. Her numbers would drop to zero and stay there for 2 weeks. This is why we would be hospitalized for up to 6 weeks as she could not be exposed to any outside illnesses at this time because she would not be able to fight them off. Dr. Cheerva said there is also a 5-8% chance that Ambrosia would not survive the high dose of chemo, but because of how well Ambrosia has tolerated all the chemo up until this point she would put her at the lower end of that spectrum. It is a risk she had to tell us.

Dr. Cheerva said if we went this route and Ambrosia's tumor shrunk more than 25% then we could try something that had never been done for Ambrosia's kind of cancer. If the tumors shrunk more than 25% we could try to do a high dose of chemo with bone marrow from a donor. There is an effect from bone marrow donors seen in some kinds of cancer. The immune system from the donor can help fight the tumors and shrink them. This is not the case with all cancers and has never been done before for Ambrosia's kind of cancer. This would be experimental and before it could be done the hospital would have to approve protocol for it and the insurance would have to approve it as well. It would take 2 to 3 weeks for a bone marrow donor to be found as well. All of that depends on how well Ambrosia would respond to the high dose of chemo with her own stem cell rescue first.

Those were all the options given to us. Dr. Cheerva said she wished there was a certain procedure she could point us to that she could say this is the one that will be best and take care of the cancer, but unfortunately there just isn't because of how rare Ambrosia's cancer is. She told us that she would give us time to think about our options and if we chose to go the high dose of chemo route to try and let her know by today as one of the medicines is only made in Italy and would have to be ordered right away so we could get started.

After talking to Wes last night, we have decided to move forward with the high dose of chemo. We feel it is the best option to possibly yield some results more so than any of the other options. Reality has set in and we realize we are truly fighting a battle that we are unlikely to win. However we are not ready to give up on Ambrosia and will fight as best we can to get her cured. It has been hard these past 24 hours to stay positive and not think about what may happen. Tears have continued to be shed and will continue to be I am sure for a couple more days. Then our focus will be on staying positive and moving forward with treatment and enjoying every moment we have with each other.

I have already called the clinic this morning to inform Dr. Cheerva of our decision. I have not heard back yet as to when we will be admitted for the high dose of chemo. As soon as I know I will be sure to communicate it here and on our Facebook page for Ambrosia.

Take time today to let your loved ones know how much you love and care for them, because tomorrow is not promised for any of us. Time is so precious.

Saturday, we went to OMO knowing we were at least going to be getting platelets as the nurse practitioner had called the night before to say her platelets and hemoglobin had dropped. After I told the nurse practitioner about Ambrosia's nose bleed she decided we definitely needed to come in Saturday morning to at least get platelets. They are doing construction at Kosair along with changing over to a new computer system to use electronic medical records. We hadn't had any issues until Saturday. They had moved OMO registration to the first floor, but I saw no one there. I went up to the 7th floor and told them I was there for OMO and they tried to figure out how to get us registered. We eventually had to go down to the lower level and to outpatient registration. After several minutes of waiting they ended up having me sign actual papers and sent me on to OMO. I was suprised since it was Saturday that they had OMO open instead of just having us up on 7West. We got to OMO and the nurse explained that the new system hadn't left a spot open for them to be scheduled for OMO and that is what caused the delay.

We got settled in and they came to get a CBC to check and see exactly what products we were going to need. Ambrosia ended up needed platelets and blood. However, they only ran the platelets for an hour and then the blood for 1.5 hours. That ended up being great as I was worried since we had to get blood that we were going to be stuck there most of the day. We got finished getting transfusions and went to the Kid's Fair they were having here in town. We had a good time and I got to see someone who used to work at Penney's with me. Later that night my parents and niece and nephews came down to visit. We had a nice full day on Saturday!

Monday, home health came back out to the house to do a CBC and check to see where Ambrosia's numbers were. A couple of hours after the nurse left, I got a call from the clinic nurse who said Ambrosia's numbers were good, but to continue giving her neupogen shots until our next visit.

Today, we went back to the clinic to have numbers checked, get the vincristine chemo medicine, and to find out when our next CT Scan would be. Her numbers were doing great still today, but I still have to give her one more shot tonight. We saw Dr. Cheerva today. She said they will schedule her CT scan as soon as possible. The earliest will be Friday, but I am guessing it will be next week as we also need to have an EKG and heart echo, GFR test, and the one hearing test that Ambrosia wouldn't allow them to do the other day.

Dr. Cheerva is hoping this CT scan shows no more tumors. If it still shows tumors, but they have shrunk to where they are almost gone we are going to move forward with transplant. This means they will do a very high dose of chemo. It will wipe out her bone marrow which they will replace with the stem cells they have already collected from her own body. This process will put us in the hospital for 6 weeks. She wants to do two rounds of this high dose of chemo. If for some reason the tumors have shrunk but not quite enough to where they are almost gone, then we will continue with the same chemo protocol as the last two rounds. If the tumors haven't shrunk or have gotten bigger or there are new tumors we will have to reevaluate Ambrosia's treatment.

A lot is riding on this next CT scan. We desperately need her to be clear of all tumors! I can almost see the light at the end of the tunnel but I am trying not to get too far ahead of myself. Please continue prayers and thoughts for Ambrosia. Share her Facebook page and this blog to others as we need a lot of positivity sent her way for a clear CT scan!

Monday morning I called the clinic for them to get us in to check Ambrosia's numbers. We had to be there by 10:30 am. After we got there I found out we had to go over to Kosair and register to get her NJ tube replaced right after they checked her numbers. Her numbers on Monday were really high because of the neupogen shot I had given on Sunday night. They had me stop her neupogen shots until her counts get lower.

From her clinic appointment, we went straight to Kosair and registered for them to replace her NJ tube. While sitting in the X-ray waiting area, a mom and her teenage daughter sat down and commented on how cute Ambrosia was. They did eventually ask what was wrong and I explained she had cancer. They said they would be praying for her and that she looked like she was a fighter. I have to agree with them!

Soon the fluoro team called us back. Of course since they had just replaced her NJ tube they wanted to know what happened. I told them we just missed seeing them! They laughed at that. The doctor who puts the NJ tube in told me I should start putting some Coke in Ambrosia's line every other day just to help keep it clear of clogs. She said to let it sit in there for about 20 minutes and then flush it through. I have been doing that and hopefully this NJ tube will last for the rest of her treatment!

Tuesday, Ambrosia had an appointment with the audiologist to have her hearing tested. We have had this test twice before. It's something that is done after every 2 chemo treatments. One of the side effects of some of the chemo is hearing loss. Ambrosia wouldn't let the doctor do one of the tests. The doctor said she got a good idea of how Ambrosia hears with both ears, but the test Ambrosia wouldn't let her do would have let her know how each ear hears on it's own. We may have to try the one test again before our next round of chemo. If that's the case, Ambrosia may have to be sedated as you have to be still and quiet for it to be done! Not easy for a baby to do. The last two times she happened to fall asleep so that it didn't bother her. For now it seems Ambrosia's hearing is unaffected by the chemo.

Wednesday, we had another clinic appointment to check numbers and to get the vincristine chemo medicine. Dr. Raj saw us on Wednesday and said her numbers were still good. He said he would schedule us back in a week. Next week they will also schedule a CT scan to see how Ambrosia has responded to this new chemo protocol. As soon as I know that date I will be sure to post about it as we will need everyone's thoughts and prayers that we have good results!

I was a little concerned that we weren't going back to the clinic sooner than next week as I am used to going every couple of days for them to check her numbers. I had the front desk lady check again before we left to make sure that is what Dr. Raj wanted. She confirmed with him that was the case. So we went home and have been hoping nothing interrupts our nice break without doctor's appointments!

Thursday, one of the home health nurses came to the house to change the dressing on Ambrosia's broviac line. We were able to get that done with no incidents. Later that night I laid Ambrosia in her crib as she had fallen asleep. While I was attempting to get Braeden ready for bed, I heard Ambrosia crying. I went to get her and immediately realized that she had developed a nose bleed. It took a couple of minutes for it to stop but it finally did. I was able to get her to back to sleep for the night.

This morning, Ambrosia sneezed a couple of times and that triggered another nose bleed. I mulled over calling the clinic but finally did. I am afraid her numbers have dropped enough that she needs platelets at the very least. One of the nurses from the clinic called me back awhile later and said she would call for home health to come out and do a blood draw to check Ambrosia's numbers. I haven't heard from home health yet as to when they are going to come out today. Hopefully it will be soon, because if she needs platelets or blood I would like to get that taken care of as it is a lengthy process! Even better would be me worrying over nothing and she ending up not needing any transfusions!

Thank you for everyone's continued thoughts, prayers and support. Thank you also to those who have liked Ambrosia's Facebook page and shared it. We appreciate all of you!