CBC to Admit

I woke up early to get a shower before taking Presley to clinic. She came into the bathroom and I took one look at her and thought, oh no. She was so pale. I put a hat on, scrounged around for something to wear, and took her in her jammies, straight to clinic. I could not wait any longer.We were about an hour early. The receptionist looked confused and said..your early. I just said Oh! As if I didn't know. At this point I didn't care. They wouldn't let me come last night. They got Presley back in the room. At this point she is pretty sick. Coughing, very weak, complaining of jaw pain, dehydrated, pucking up mucus, won't walk....scaring her mother and her doctors. Holding her I just kept saying a silent prayer that she would be safe. I just wanted a CBC done so we could see what was going on in her blood. The nurse came and did the port access and every other test imaginable to see if she had some virus or sickness. The worse is the nose swab. Presley was so upset. I had to hold her down. I hate doing that. Then the Child Life specialist came and played doctor with Presley. I'm so thankful for that. The distraction was much needed. The fellow came in and asked all the questions about symptoms and listened to her. I was just holding it together at this point. I was so worried about Presley and I was upset how the nurses had handled the past two days with us. The nurse then came back in and said...she needs blood. I was like...DUH. Mothers always know best. She was very low on blood. Then she said her ANC is 100. Yikes. Something was going on. It wasn't until about 11:00 that Doc Fluchel came in. I can read him pretty easy, it wasn't good news. But he could tell I was very upset and he was a little confused. I let it out about how the nurses handled my concerns. I cried, I didn't hold it together very well. He made it clear that it wasn't handled right and in the future to just ask to talk to him. He said he would talk to the nurses involved. After getting that out. I was ready to hear the results for the blood work. He said...her blood work is in, I'm concerned. Something is going on. ANC 100 (very low normal range is 1500-9000)  hematocrit was 18.4 (they usually transfuse at 24 and normal is 34-40) hemoglobin was 6 (normal is 11.5-13) and her platelets were 31 (normal is 150-400)... I then said..."You want a bone marrow aspiration (BMA)?" He said YES! 10 months ago I had no clue what a BMA meant. Today..I know better. Bone Marrow Aspiration is the test to see if leukemia is present and what type. I knew at this point things were not good. They don't do these procedures unless they have suspicion that a relapse has happened. Gosh I don't even like to write that word. The doctors were very concerned about the drop in all her numbers. WBC (white blood count, RBC (red blood count), platelets and her ANC. Her current drugs should not cause her numbers to drop this low and yes she was sick, but usually a viral suppression will not drop her counts (numbers) this low either. Doc Fluchel consulted with the other doctors and they agreed that a BMA needed to be done to role out a relapse of cancer, meaning the leukemia was back. He said we could wait for a week and see what happens but that he thought none of us would be able to sleep. I agreed. I could not have slept. We might as well confirm or deny that a relapse had happened. Doctor Fluchel had looked at slides (blood) under the microscope to see if any leukemia was in the blood. It was not showing up, this was a good sign but did not give us the full answer. When Presley was first diagnosed she has leukemia cells (blasts) in her blood. Her CMP (complete metabolic panel) came back in the normal range. Her kidney and liver were functioning properly. At this point a fever spiked. With an ANC of 100...you all know what that means. We knew we would be spending the night. We got antibiotics, blood culture (to see what would grow), sent us down to radiology for a chest x-ray to see what was going on in her lungs from the cough. We then went back up to clinic for fluids and then got checked into our room. Once in the room Presley was given a blood transfusion. The usually procedures of making sure her body does not have a reaction to the blood. Thank you so much for that selfless person who gave the gift of life today! After 4 hours our little vampire was starting to look and feel so much better. Thank heavens, that always is a sigh of relief when they start to act like themselves again. A bag of blood is a bag of energy. We still have had a huge hurdle we needed to get over. As Doc Verma said..."Presley is scaring the team again!" Tensions were high in clinic and in-patient. We all knew what we could possible be facing. I was scared. So very scared. More scared than when she was first diagnosed. Relapse is hard. Relapse means, heavier chemos, radiation and the ultimate... bone marrow transplant. We were naive months ago. Today our world turned upside down once again just like it did on March 12. I just kept saying a silent pray, pleading that this really was not going to happen, but in the same breath trying to prepare myself for hard things. That night was so very hard. I didn't sleep but a few hours, thanks to NyQuil (I was starting to get sick too). Thanks to Grandma for dropping everything and coming to be with Crew. Thanks to Wendy for holding all our garb and being a friend to talk to. When I'm left alone...i just cry.. and Presley does not need that. I never really thought that her low blood meant her leukemia was back. I kept trying to go back to that place that my mother instinct never told me to be worried about relapse. I remember trying to fall asleep and thinking...oh crap replase...oh no that's not going to happen, relapse, no way, relapse... please not us. My mind was racing with good and bad thoughts. I'm so glad we didn't wait for another week for this test. The BMA was scheduled for 1pm the next day (Jan 17th). When Becky called from RTU (rapid treatment unit) to give me eating directions for the procedure..I just cried. We all know what a BMA means. She was holding it back. She promised me she would try her best to get her in before 1pm if she could. So thankful for those wonderful nurses down on the first floor that just love Presley. Some days I just don't know how to even put a foot in front of the other. Thank you to the Kelly's and Jones's who brought dinner that night. They went to our favorite BBQ place and the owners had read our post on Facebook. Dinner was on the house. We are so blessed. Thanks so much R&R BBQ. We were given blessings that night and the Bishop came to visit. We are so thankful for our support system. I knew we needed a miracle. A miracle was my pleading words. I needed the Lord to know that our little family was struggling already so much that we didn't need to add anymore. #weneedamiracle I felt peace to know that if that was the plan it would work out. It was in the Lord's hand. I was just pleading..do you blame me?

This little girl needs blood. The picture gave her more color that in reality

no stork bite...pale as a ghost

No too happy about having to spend the night

Our little VAMPIRE getting blood.
Thanks to those who donate blood. It saves lives!
Her coloring was so bad, her energy was so low.
Thankful for the blood today!
The best bag of energy you can get!