Cycle 2

Back to clinic today for our monthly visit. Today Presley started Cycle 2 (each cycle is 3 months) of LTM (Long Term Maintenance). When you begin a new cycle that clinic visit includes IV chemo and IT chemo (intrathecal or back poke)  Her blood work "looks great". Her ANC is 3100. It's a little high (for Presley, not for a healthy person) but for a Leukemia kid they want her ANC (part of your white blood count) to be immune suppressed and range from 500-1500. When it's too high they usually adjust the chemo to suppress the numbers. Doctor Fluchel is being extra careful knowing she is sensitive to these drugs and that we are going on her "Make-A-Wish" trip in less than a week. They will keep her on 50% of her 6MP (nightly oral chemo) and her Methotrexate (Thursday chemo pills). Her platelets are 249 and her RBC looks great. We should be starting a steroid pulse but we are doing a little less, as these are very hard on Presley. Steroids are hard for all kids but seem to be especially hard on little Presley. Doc Fluchel recognizes this fact and is working to make our current treatment plan more bearable for her. When she is on steroids she will not walk and is in a lot of pain. So thankful for a doctor who looked me in the eye and said "I want what's best for Presley", I believe he's sincere in telling me that.

This is the entrance to "Clinic", it is on the 4th floor by 'in-patient". 

Silly girl!

Those are the hand prints of a little brave girl!

Getting her meds -- "The Tree"...being all hooked up to lines and tubes makes it hard to keep her entertained.

This week Presley touched her port for the first time. This is a big moment. Her Power Port is placed under the skin so they can access her quickly but it also helps so when she is not accessed, she can get wet and not have to do sponge baths. It has almost been a year and that purple triangular port has been in her chest. When it was first placed she would not take a bath and after a while I finally figured out why she wouldn't take a bath, because she didn't want to see the port. I try and encourage her to show her port to others and try to talk about it. She finally touched it. She giggles and says its ticklish. She shared with her nurse that she touched her port. They thought it might be a good idea to let her look at a port and see what it looks like. They let her hold a port. I don't know what she thought about it. She was not too interested. I assume it's hard for her to wrap her mind around it. She cried hard today when getting accessed. She has to endure so much. It wears me down to see all that she has to endure. We played with glitter and touched all the items in clinic as usually, visited with our favorite nurses.

Presley was given her 1 hour long drip of pentamadine (an alternative to an antibiotic that she was taking), Vincristine (IV chemo) and we headed down stairs for the "back band-aid". With low blood sugars we headed downstairs for the procedure. 

Today's lumbar puncture was not until 1pm. No food after midnight (the night before) and only clear liquids up until 10 am. Ugh. These are long hard days. Leukemia likes to hide out in the brain so Lumbar Punctures are done to try and prevent a central nervous system relapse. They put Presley to sleep, give her a spinal tap to remove spinal fluid and inject chemotherapy into her spine. Presley has had this procedure done at least 20 times if not more. This is a reality for childhood cancer. Again.. enduring so much. I snapped a quick picture in the procedure room just as they gave injected her "sleepy meds". I would love to watch the procedure one day. Some kids do a lighter sedation and stay awake for LP's but Presley is still pretty young for that. But in that case parents are able to stay with the kids as this procedure is done. It only takes Presley about 5 seconds to be out and then I give her a kiss and walk out. Presley's oncologist then does the procedure. A nurse is by her side the whole time. My heart is always full when she is in the procedure room with doctors and nurses that have her best interest in mind. I always beeline to the cafeteria. I fast with Presley. I can't eat in front of her and tell her that she can't eat. My blood sugars were very low today too. 

Thanks Carley (hope I spelt that right) for her darling hat! We love you! Here she is waiting for her LP

She always loves to watch Disney Jr. while waiting for her procedure

Here she is waiting for her spinal tap. They put propofol in her port line and she is out in 5..4..3.. They then use the mask during procedure to keep her asleep. One little brave hungry, tired girl. She always has "Pink and Brown" with her. That blanket is one special blanket. It has been through everything with her. So thankful for that kiki (That's what she called it when she was little)

We are officially done with cycle one of LTM. It was projected to be an easier 3 months. Not the case as we had that bad scare in the middle of that cycle. Glad for that cycle to be done. In maintenance the cycles look the same for her treatment plan..we just repeat until she is done with treatment. In front line treatment the chemo schedule changed a lot. We will do a total of 6 cycles. We only have 5 more! That means only 4 more LP. I don't know how I feel about that. Ecstatic and scared at the same time. Can't wait for this mess to be over but fear the day I worry when she is no longer on chemo. Love Hate! 

Thanks for those that continue to support her (us) and be our cheerleaders. We could not do this alone. We are hoping and praying that we have no issues in Florida and that this cycle is a little easier on Presley and our family. It feels so good that the inversion has finally lifted and the sun is shinning. That sun is hope for the flu and cold season to be over soon. Winter months are hard for the cancer cuties! 

It has almost been one year. We will hit our one year from diagnosis the day we get back from our trip. We will choose to celebrate on that day. We still have our little girl and thankful for modern medicine that has given us hope for a bright future.