There had been some confusion as to when we were going to be able to go home. Some chemo medicines require fluids be given after because they can damage the kidneys and they want them to be flushed out. Others require a catheter be placed while receiving chemo and sometimes is kept in a day or so after so that the baby doesn't develop a horrible diaper rash. We had been told that we were going to have to stay 48 hours after the chemo finished to keep a catheter in. Then another day I would be told that we would be able to leave the same day the chemo was finished. I finally told them that they needed to get their information straightened out and let me know what needed to happen one way or the other. I was prepared to stay if that was what needed to be done or I was fine with leaving if Ambrosia would be okay. The nurse practitioners looked at our past chemo stays to see what protocol was used before and determined that we would be able to go home when the chemo finished yesterday.

Around 5:50 pm yesterday, Ambrosia's pump for her feeds began to beep. The bag was empty. Her feeds were due to stop at 6 pm, so I went and grabbed a nurse and told her. She came to the room to record the amount Ambrosia had been fed and disconnect her from the pump. She then got some sterile water to flush into Ambrosia's NJ tube. In doing so, we came across an issue. Ambrosia's NJ tube, that we just had replaced on Valentine's Day, was clogged. Again. It was strange because the pump never indicated there was a clog. Those pumps are pretty picky and usually pick up on a clog right away. We tried the usual tricks. Tried flushing some Coke in the tube, tried aspirating any clog out, they also ordered their powder mix to try flushing in. Nothing worked. So around 8:30, they pulled her NJ tube out. Disconnected her from the IV and also pulled out her catheter. We were free to go!

I have to start giving her the neupogen shots tonight. Tomorrow morning I have to call the clinic for them to see Ambrosia and they also have to schedule for her NJ tube to be replaced again. I feel kind of awful that it's having to be replaced so soon after the other one. My phone will soon have a million alarms on it as I will have to set one every 4 hours to flush her new line with water as the fluoro team told me to do with the last one. That alarm will be one of many, as I have alarms for when I have to give all her medicine. If I didn't do that there is no way I would remember to do everything!

Tuesday we arrived at the hospital around 7:15 in the morning and got registered. They only had two rooms available, both of which were in the back. I picked one we hadn't been in before. I don't mind being in the back, but this room ended up not having a shower of it's own. I hadn't had to deal with that since we were in the PICU. We got settled in and they started her chemo around 2 pm. Ambrosia seems to have finally hit a stage of stranger anxiety. She has been a little weary of the doctors and some of the nurses. I guess it was inevitable she would act this way, but it's just so unlike her!

At one point during the day on Tuesday, a massage therapist came to the room and asked if I would like a massage. I was a little hesitant because I thought we would have to leave the room, but she had a massage chair that she wheeled in the room. I got a massage while two of the nurses tried to put a catheter in Ambrosia. Ambrosia of course was not a happy camper and while I enjoyed the massage, it was cut a little short as Ambrosia needed some mommy attention to calm down. The massage therapist said she would come back, hopefully she will as I wouldn't mind another massage!

The rest of Tuesday went off without a hitch. She slept fine through the night and we had no major issues. Wednesday, however, was a different story! Ambrosia was due to have her broviac dressing changed. We had a nurse that we had not had during any of our previous stays. His name is Bob and is incredibly nice, like all the other nurses up here! He came to change Ambrosia's dressing, and after pulling off her old dressing he noticed that her line had a crack in it. He immediately called for surgery and for one of the nurse practitioners on duty to come take a look at it. The nurse practitioner came and said to go ahead and recover it and they would start antibiotics as a precaution in case there was an infection. Surgery called and said they were in a middle of a trauma and would be down in a little while to take a look to see if it could be fixed.

In the midst of all of this, Bob was holding on to the line waiting for his helper to bring a new dressing to put over it while we waited. All of a sudden, Ambrosia began to bleed from the line that was cracked. Bob had to call again for the nurse practitioner and surgery to let them know of the change. Someone from surgery was able to come down quicker and take a look. She also took a picture to show the surgeon. The nurse practitioner came back as well and they were able to clamp the line off and get it recovered until surgery could evaluate the situation. They called someone from the IV team to come and put an IV in as we now couldn't use her broviac line. Ambrosia took that well considering everything!

Unfortunately, the tear was in a place that could not be repaired and needed to be replaced completely. I signed papers giving permission for them to place a new broviac line. Ambrosia had to be NPO by 2 am and her surgery was scheduled for 10:30 am. We got upstairs a little later than that and by the time the surgeon, anesthesiologist, and OR nurse came in to verify what was being done, it was right before 12 that they took Ambrosia back. The surgery was only about 30 minutes. The surgeon was able to use the same tunneling site but the exit site was moved slightly. As my dad said, Ambrosia has a new battle scar but it's okay because she's winning the war! 

After surgery, Ambrosia was in recovery for about 45 minutes. They brought her back down to her room and started IV fluids. The fluids had to run for 4 hours before they could start her chemo back up. I am happy to say that chemo is back up and running! We should be done and released from the hospital on Saturday. Our favorite nurse has been taking care of us tonight and last night as well. I had nominated her back in December for a DAISY award and she let me know that she was given the letter I wrote for her. She was really appreciative and said it meant a lot. We were able to catch up and chat for awhile which was nice because we haven't seen her much since December. It's no secret that she is our favorite. She takes great care of us. So much so that she was able to move us up front and in a room with it's own shower. It's little things like that which make our stay that much more comfortable.

Another member of the staff told me today that I had two of the most beautiful children. She said that Ambrosia makes her smile every time she sees her. I thought that was incredibly sweet of her to say. I, of course, agree with her. I am one lucky mommy!

Saturday we took our son to his first birthday party of one his classmates. The party was at Chuck E. Cheese so of course there were tons of kids everywhere. After we located his classmate and met her mom and grandmother, my husband and I sat at a table near the party table. The grandmother of the birthday girl came and sat with us and asked about Ambrosia. We told her she had cancer. She was sorry to hear it and said they would pray for her. Awhile later one of the kids running around stopped at our table and looked intently at Ambrosia. She asked why Ambrosia had the line in her nose. I never know what to answer when a child asks this question. Do I say she has cancer? Would a kid even know what that means? Would a parent want me to tell their kid about this horrible disease? I usually just answer that she needs it to get food because she's sick. That's usually enough of an answer. This little girl pushed a little more for answers but eventually went on her way. After the party, we ran some errands and then were able to enjoy the rest of the weekend at home.

Yesterday, Ambrosia began to have some issues with vomiting. This had me a little worried that something was going on with her numbers. I was afraid maybe she dropped again even though I gave her the neupogen shots Friday and Saturday. I was able to get doses of Zofran and Benadryl in her NJ tube and that seemed to help for several hours. She thew up one more time about 8:30 last night but she was due for more medicine that I gave and we haven't had any problems since. I don't know what the issue was but she never ran a fever or had any other symptoms. She is doing fine so far today.

This morning I got her ready to head to the clinic for our number check. The whole way there hoping and praying that her numbers were good enough for us to be admitted tomorrow. We got there and Ambrosia was being really chatty in the waiting room. This girl loves to hear herself talk. They called us back and took her blood and we sat there playing the waiting game. It didn't take too long for the nurse to come back with the best news. Ambrosia's ANC number was up to 5500. They wanted it to be at least 1000 to be able to start chemo. She's not quite at 48 hours after the neupogen, as that will be around 8 pm tonight, but it's a good sign she is recovering finally from her last round of chemo. Her platelet count had doubled from Friday which is a good sign.

So tomorrow morning we get to be admitted for round 6 of chemo. I believe we should be in the hospital for 5 or 6 days. I get confused sometimes as to how many days we will be in. And it sometimes depends on how late the chemo gets started. Let's hope everything is in order and they can get started right away!

Yesterday morning, after two days of trying to get Ambrosia's NJ feeding tube unclogged, I called the clinic before we left for the hospital. I spoke with one of the nurses and told her about the situation. They were able to call ahead to the fluoro x-ray department who said they could fit us in before our other tests if we came right then. I finished getting us ready and left for the hospital. The fluoro team replaced her NJ tube and told me I need to start flushing it with water every 3-4 hours even though her feeds are ready to feed and not a powder that is mixed. It apparently can still clog!

After replacing her NJ tube, we had to head to the second floor for them to do her heart echo and EKG. That went fairly smoothly and we were off to our next appointment which was getting the GFR test for her kidney function. We had to sit in the waiting area for a few minutes while they got the test area ready for her. A lady came and sat next to me and asked how old Ambrosia was. I told her and she said her son had just turned 1 year old two days prior. She asked if it was okay to ask what the line in her nose was for. I explained it was for feeding her formula. She then asked if she had to have it because she won't eat. I then told her that Ambrosia had cancer and it was to keep her calorie intake up and from losing weight. She was, as most people are, shocked when I tell them Ambrosia has cancer. She said she would be praying for her. We exchanged a few more pleasantries and a short time later she apologized for getting emotional. I looked at her and realized she was crying. I told her it was okay and I had done my fair share of crying too. I imagine she was thinking of her little boy.

We were then called back to have the test done. I took a picture of her while she was in the machine. They put a contrast in her broviac line and the test takes 6 minutes. They have her bundled up in a bean bag type blanket they suck all the air out of to keep her stable and from falling off the table. She takes it pretty well and soon after I took her picture, she fell asleep.

The test was over and we were on our way back home. It was such a nice day out that after picking up my son from school I decided we should go to the park. While we were there, another mom came and sat on the bench next to me. She had a baby who was 7 months and she asked how old Ambrosia was. She then asked about her tube and I explained for the second time that day about Ambrosia's diagnosis. She too was shocked to hear it and said she would be praying for her.

This morning we headed to the clinic for them to do counts and see if they were good enough to be admitted. A little while after taking her blood the nurse came back and said they were having to do a manual count because the machine's count showed Ambrosia had dropped significantly since Wednesday. We sat and waited some more and soon the nurse came back to tell us what the final count was. Her ANC count had gone from 16,000+ on Wednesday all the way done to 876 today. That was a huge drop. Unfortunately because of the huge drop we could not be admitted for chemo today. The news was not something I was prepared to hear today. I was all packed and ready for us to be admitted. It caught me off guard enough that I shed a tear or two. The nurse said with the aggressive type of chemo she is getting now it's not unusual for this to happen. She also said it was a good sign that even though her numbers dropped it means that her body is responding to the chemo.

I have to give Ambrosia the neupogen shots tonight and tomorrow. Then on Monday we have to go back to the clinic for them to check her numbers again. If they are good enough to be admitted we will go in the hospital on Tuesday. The nurse said they already have 5 admits on Monday is the only reason they will hold us off until Tuesday. So everyone keep your fingers crossed that her counts are good on Monday. We need this chemo to wipe this nasty cancer out of her body! Don't forget to "like" our new Facebook page! It's Angels for Ambrosia.

I feel like I am about to share breaking news, since I literally just got off the phone with the clinic with a change of plans for tomorrow. Dr. Ayannar thought that doing a CT scan tomorrow was too soon since they normally do it after two rounds of chemo instead of just one. She talked to Dr. Cheerva who agreed and Ambrosia will not have a CT scan done tomorrow. This is fine as it means she doesn't have to be NPO and I also don't have to be at registration at 7 am! We now have to be there around 9:45 and she will have her heart echo, EKG and the GFR test.

Today Ambrosia's counts were up! Since we just gave her a neupogen shot last night, they have to wait 48 hours and get another count to make sure the numbers are still good without the neupogen. We will go back to the clinic on Friday at 8:30 am and they will check her numbers. If all is still good we will be admitted for chemo on Friday as well. We should be in for a total of 5 or 6 days again for this cycle. Hopefully they will be able to start the chemo shortly after we are admitted and we can get rolling!

Home health came and changed the dressing on her broviac line today. The nurse was looking at pictures I have on my wall and asked if it was Ambrosia. They were actually pictures of my son around 4 months and 7 months old. She thought they look just alike. I have always thought Ambrosia looks just like Braeden did when he was a baby. We finally got Ambrosia's professional pictures back, so as soon as I get some frames her baby pictures will join his on the wall as well!

We have a busy couple of days ahead of us so keep your fingers crossed that everything goes smoothly!

This morning on our way to take Braeden to school my cell phone rang. I immediately knew it was the clinic and wondered why they would be calling me. I thought perhaps they had the results of Ambrosia's urine sample from the previous day to make sure her UTI had gone. It was Jill, the scheduler for the office. She asked me if the hospital had by chance called me yesterday. I told her that they had not. She informed me that they had scheduled all of Ambrosia's pre-admission tests for today! Unfortunately for the CT scan, Ambrosia has to be 6 hours without eating or drinking and I had already nursed her this morning.

Jill said she would call me back and let me know when the test would be rescheduled. She called back a short time later and told me they were now scheduled for Thursday. We have to be at outpatient registration at 7 am. That's really early, but probably for the best as the first test is the CT scan. They can get it out of the way and then I can nurse Ambrosia as she doesn't have to be NPO for the other tests. After the CT scan Ambrosia has to have a heart echo and EKG and then the GFR test for her kidneys. As long as things run smoothly and on time, we should be out of there by 12:30.

We are hoping that tomorrow when we go to the clinic Ambrosia's numbers will be back up so that we can be admitted on Friday for chemo. Hopefully the CT scan on Thursday will show that the tumors are responding to her new chemo protocol and there will be no surprises!

We had a clinic visit today for them to check her numbers and to also make sure the UTI that they had been treating her for was gone. After quite awhile of waiting, the nurse practitioner came in with her count results. She had actually dropped in her counts. This was not something I was prepared for today. She needed to have a blood transfusion, which generally takes anywhere from 3 to 4 hours once they get it started. Since her numbers had dropped, they decided to have me start her neupogen shots again for two nights. We go back on Wednesday with the hopes her numbers have gone back up to stay. They are also supposed to be scheduling her pre-admission tests this week, but all of that depends on if her numbers go up for us to be admitted on Friday.

We got over to OMO for them to start her blood transfusion at about 12 pm. They had to draw blood to get her type and cross. Then it was a waiting game for them to get the blood. It didn't get started until 2 pm and didn't end until after 5 pm. Thankfully, I have wonderful parents with even more wonderful and understanding employers, who are able to leave and get my son from school and bring him to the hospital. So thanks to my dad that worry was gone!

Ambrosia has been quite the chatterbox today and I was able to capture some of that on video while we were waiting in the clinic. So now for your viewing pleasure, her adorableness:

It's been so calm around here that I almost don't know what to do with myself. We are going on Week 3 since our last admission for chemo. We haven't had to have any transfusions and we've had no sicknesses that would put us back in the hospital sooner then expected. Except for the frequent trips to the clinic for number checks and the home health nurse coming to the house, you would never know what our family is going through. It would seem we have a normal happy and healthy baby. I do hope that one day that will be the case. I can see a day where Ambrosia is cancer free and I know that is what all of us are hoping for. There are times when I let my mind wander to the other side of things, but I try my best not to dwell there for my own sanity. Nothing good comes from dwelling on the negative in anything in life.

I have started a Facebook page for Ambrosia to help people stay updated on her progress. Feel free to share the page for others to "like" as well. The more people out there thinking about her and praying for her can only bring positive results. The page is called Angels for Ambrosia of course! And here is the official link: http://www.facebook.com/AngelsForAmbrosia.

Tomorrow we have another trip to the clinic to check numbers. We should also be told when tests are to be done so that we can be admitted on Thursday for round 6 of chemo. As far as I am aware, Dr. Cheerva wanted one of those tests to be another CT scan to see if we see any progress after the 1st round with her new chemo protocol. I am hoping for good results. We need the tumors on the lungs to have shrunk! I will of course update as we get new information.

I will leave you with a video of Braeden playing with his sister. She really loves her brother!

We went to the clinic today for them to get counts and for her to get the vincristine chemo medicine. Yesterday, home health came out to get a CBC on her and the nurse called to let us know her hemoglobin had dropped a little more since Monday. She said to expect to have to get a blood transfusion today.

Fortunately, her hemoglobin had gone back up a little on it's own. Dr. Cheerva decided since she was on her way back up we didn't need to get a transfusion. They gave her the vincristine medicine and we were good to go! We have to go back on Monday for them to check and make sure her UTI from her last admission is gone as she finishes her last dose of antibiotics for that today. They are also scheduling her for the GFR test on the kidneys, heart echo and EKG, and another CT scan to take place next week. They are hoping to get all of that done so we can be admitted on Thursday for the next round of chemo.

I wish I had more things to report, but I should probably be grateful for the calm. That can always change at any moment.

I didn't realize it had been so many days since I last updated the blog! We haven't had a lot transpire since I last wrote.

Friday, the home health nurse came out to the house and changed Ambrosia's dressing for her broviac line. The worst part of that for Ambrosia is having to be held still while it's done. Out of all the procedures and things she has done to her, the one thing that gets her crying and fussy is being held still. She takes everything else like a champ and actually has started to even get used to being held still.

Saturday, we decided to embark on a trip to the Newport Aquarium. We passed several cars that were either in a wreck or had gone off the highway into the median or ditches on the way there. We thankfully made it with no issues and the roads were completely clear on the drive home. In case anyone out there is interested, the Newport Aquarium is giving 2 free kids admissions with every ONE adult full price ticket purchased through this month! Pretty good deal. We had a great time.

Sunday, we pretty much had a low key day at home. Braeden and I had a couple of short snowball fights outside with what little snow was left. I turned on the Super Bowl and watched in between making dinner, playing with the kids and giving baths.

Today, we went in to the clinic for them to get counts and make sure she wasn't needing any transfusions. Her hemoglobin had dropped from 10 on Thursday to 8 today. Her platelets dropped from 400 to 127. She isn't due to go back to the clinic until Thursday, so the nurse is having home health come to the house on Wednesday to get another CBC drawn. She was afraid she may be in need of blood or platelets before Thursday came.

Throughout everything Ambrosia is still being her cheery, smiley, and cute self. She has had a little bit of issue with vomiting even with me giving her medication on time but it usually is only a little once or twice a day. No where near what is has been in the past.

Keep her in your thoughts and prayers!