Delayed Intensification

Another round is done....well almost.

I was told Delayed Instensification would be rough.  And it definately kept us on our toes.  We had a few scares and more than one unexpected trip to the ER or clinic.  What I thought would be 8 weeks of once a week chemo days, turned out to be, well, a lot more than that.

Week One: (May 16) Began with an IT Methotrexate, Vincristine, Doxorubicin, and twice daily doses of the steroid Dexamethasone.  (I know I've said it before, but I really detest the steroids!  Yep, even more than I dislike the chemo!)  Two days later we were back in for her PEG shots.  Everything was going great.  Sadie was beginning to get ornery and hungry, but it was managable.  The steroids taste awful, but she was swallowing them, and had a sticker chart that counted down the doses until she was done.

Week Two:  (May 23) Vincristine and Doxorubicin.  No more steroids!  I've learned coming off steroids cold turkey can be miserable...but Sadie handled it like a champ.  Just one day of achiness and three days later she was her cheerful normal self again.  At this point, we even took a mini vacation up to Camp Okizu for an incredible weekend of family fun. (I'll post more on that later.)

Week Three: (May 30th) Doxorubicin, (Held the Vincristine because of her footdrop and voice), and she was back on the steroids.  Ackkk!  This time, she WOULD NOT take the liquid form.  One evening, I tried three times to get her to take the dose.  The first time, she spit it out.  The second time, I pulled in her brothers as cheerleaders and we succeeded in getting her to swallow it... followed by gagging and throwing it and dinner up all over my bed.  I cleaned up the mess and mustered up the courage to try one more time.  Poor Sadie was in tears.  I got it in her mouth, but she just spit it out all over me and her.  Three loads of laundry later, I gave up.  The next day I called the clinic and they ordered a pill form that she could swallow.  Yeah!  We were all so much happier.  "No more yucky kind!"  Who would have thought a two year old could learn to swallow pills!  But their small enough and Sadie is AWESOME enough that it worked like a charm!

We had a scare during week three.  Sadie was complaining that her bottom hurt.  She would tiptoe around the house saying "Ouchie" and she spent a lot of time in bed.  (This instigated the take-down of her crib so she could get in and out easily.)  I called the doctor and because her ANC was 400, she needed to come in right away.  This meant the ER...blah.  Dave was out of town for work, so I dropped the boys off at a friends house and Sadie and I headed in.  To make a long story short....5 hours later we ruled out a urinary tract infection. and concluded that she must have mucusitis inside her digestive track where we can't see. We are familiar with Mucusitis...awful stuff, but thank goodness it wasn't a UTI! This meant we got to go home! We were told once her numbers (her ANC) started to go up, the mucusitis should clear up. Home at 11:15 pm, thank goodness for my wonderful friend Kelli who had brought the boys home and put them to bed! I fed Sadie some food, gave her her meds and got some sleep. 

Week Four:  (June 6) The scares continued.  This was a week off of chemo and steroids so Sadie's numbers could recover.  I was so excited, and fully expected a great week!  But the effects and side effects of the medicines didn't give us a break.  This time coming off steroids cold turkey was a nightmare.  By 11:30 Friday morning, Sadie's entire body was tensed up like one enormous cramp and she was shaking in pain. She was screaming, and frozen, and couldn't move.  It was scarey. Evan was out of school and I had stepped out to get the laundry. When I came back, Sadie was screaming in pain, and Evan was in tears. I had already tried oxycodine and it wasn't helping so I called the doctor.   Back to the hospital.  (Luckily it was not the ER this time!) They rushed us right into a bed and gave her a dose of Morphine to calm her down and relax her. Then they did a physical exam, ran some labs and concluded it must be the steroid withdrawals.   Next time we will taper the doses so she doesn't go off them so abruptly.   She was given another dose of Morphine, and sent home....happy and comfortable.   Good news...she was no longer neutorphenic..her ANC was 1000.

Then on Sunday, Dave and I noticed Sadie's speech was slurred.  We could not get her to talk clearly.  (Okay, so she's two and doesn't talk very clearly normally, but this was weird...it was as if she were talking without a tongue.)  As the day went on we also noticed her left eye was droopy.  Time to call the doctor again.  Yep, possible neurological problems so we were sent back in to the ER.  Dave took her this time.  They did an exam and a CT scan to rule out a stroke.  Everything looked fine, and 5 hours later, she was sent home and we've been watching for other signs ever since....but haven't seen any... thank goodness!

Week Five:  (June 13) IT Methotrexate, Cyclophosphamide, 4 ARAC shots per week, and a daily pill called Thioguanine.  Dave took her in for this day of chemo and I threw together a swim party for Evan and some friends as a farewell party.  This was the week we moved.  I am still so overwhelmed with the kindness and help that so many people showed us.  I had friends that helped pack boxes.  Friends that took the boys and friends that tended Sadie.  Friends that brought us food and friends that loaded the truck.  I just want to take each and every one of those friends with me to our new neighborhood!  It is a miracle that we moved and carried off Sadie's treatments without a hitch. 

Week Six: (June 20)  IT Methotrexate, 4 ARAC shots per week, and the daily Thioguanine pill.  Dave was out of town so I took Sadie in for her IT that morning.  The night before, they had called saying her labs came back and she would need a blood transfusion as well.  Her hemoglobin was 7.2. I wasn't sure what to do with the boys.  A new friend Cindy took them bright and early in the morning (they put her under anesthesia for I.T.'s, so it was an early morning) fully expecting to have them all day.  Thank you Cindy!  This was my first time coming from Danville, and the drive was long....I underestimated traffic and showed up an hour late to the appointment. Ugh.  A tini miracle though....they checked her blood again and found her hemoglobin was back up to 8.2!  She would not need a transfusion!  I was so relieved to be going home earlier than I expected and that this chemo day was over!  A success to have pulled it off. 

Week Seven: (June 26) Vincristine and Pegasapargase.  Monday night, after Week 6's chemo, I got a call from the oncologist saying Sadie's hemoglobin was back down and super low.  It was 6.3.  Did I notice any signs?  How was she feeling?  One thing about Sadie, is that she doesn't let much slow her down.  I had no idea she was so low!!  She was pale of course...but I definately can't tell a difference in paleness from an 8.2 hemoglobin to a 6.3 hemoglobin.  And she was up and playing around just like she always does.  So Tuesday, Sadie was scheduled for her chemo, but instead would be having a transfusion.  I took her in Tuesday and she was given a unit of red blood cells and a unit of platelets.  By Tuesday morning she had dropped from 6.3 to 5.2!  Yikes!  And she was bruising easily.  Transfusions are a long day.  I think we were there 12 hours.  Cassie watched the boys part of the time, and Dave came home early to watch them the other part. 

Wednesday, we were back in for her Chemo.  (Peg and blood can't be given on the same day.)  This time, I decided to take the boys with me.  They were such troopers.  I let them watch movies and play computer games on my laptop.  It wasn't ideal, and it took 5 hours because for some reason it took a while for pharmacy to make the chemo and then they have to monitor her for 2 hours afterwards.  Blah...not a fun day, but we survived.  And I like to think it was good for the boys to see what goes on when I take Sadie in.

Week 8:  (July 3) Just Vincristine.  Should have been an easy week, except Sadie was constipated.  I took her in for her chemo, but because she hadn't pooped in 3 days, they gave her a laxative instead and sent us home.  Two days later, we came back for the chemo.

Just when I thought this phase was done, and the "scares" were over, Sadie came down with a fever.  Yesterday, July 7th, she hadn't been eating well and after her afternoon nap, she was super cranky.  Just before we were supposed to go to a barbeque at a friends house, I felt like I should check her temperature.  100.3.  An hour later it was 101.6.  We called the oncologist and were sent to the nearest ER for some tests.  This time both Dave and I took her in while Will and Cassie watched the boys....again.  (Boy do I owe Cassie big time!)  8 hours later, Dave and Sadie were transported to Lucile Packard in an ambulance and admitted.  Her ANC was 30 last night.  So we are waiting for the fever to go away and the ANC to be over 500 (no longer neutropenic) before we can go home.  Reminds me of when she was first admitted.  Right now, Dave went home to take the boys to church and I am catching up on the blog while Sadie naps. 


We have done WAY too many trips to the hospital this phase and I hope, hope, hope, the next months will be less busy!  Say a little prayer for Sadie.