Round 1 (Checked in 12/20, Released 12/23 at 1am) - This first day of Interim-Maintenance was pretty intense. Addie had to have a Spinal Tap (they check her fluid to make sure it is clear and give her intrathecal chemotherapy), as well as a Bone Marrow Biopsy BEFORE they hung a massive bag of Methotrexate (chemo) to run for 24 hours. Her procedure went great - it was pretty quick once she was fully sedated. Her Dad had to be out of town for work and Dan was home with Bentley so I decided to sit in for the first time because I just didn't want to leave her alone - God forbid. In the past I am always there while they are putting her under anesthesia and then when she is out I step out. I don't like seeing any of it. Her eyes flutter sometimes and sometimes they aren't completely closed and it just isn't a nice sight to see your innocent child like that. On top of that, no one wants to watch a giant fing needle go into their child's back. Dan or Nick have always been in there for this part, but since they both couldn't be, I stayed. I looked down for most of it and made the mistake of looking up thinking they were done and I"m sorry I did. Like I said - giant fing needle in her back. I wish I could un-see that. As per usual, Addie wakes up from Anesthesia giggly and woozy and wanting to sit up the minute she comes to. She has to lay flat for about 20 minutes to avoid getting a spinal headache and this is always the hardest part. She came out of the anesthesia just fine and wanted to eat the second we were back in her room. They hung Sodium Bicarbonate to flush her kidneys and make sure they are at a safe level before starting the Methotrexate. This nasty drug can do a number on the liver and kidneys if left in the body too long, so they are always monitoring them closely. Once her urine levels were good, they hung the Methotrexate. She thought she felt a little nauseous as soon as it started but quickly felt better and it was smooth sailing after that. We kept encouraging her to eat and drink as much as she could because the more she does that the more she pees and poops the nasty sh*t out. They check her kidney and liver levels at 24, 42 and 48 hours to make sure the chemo is getting out of her system fast enough. At 42 hours they started a drug called Lequovorin which is a rescue drug to help her cells recover and prevent any damage to them. She cleared everything beautifully and we were able to be released at 1am. Nick and I told the doctors that as soon as she cleared we wanted to be discharged regardless of what time it is. No sense in staying in the hospital more than we need to be. I'm very grateful that Addie's Dad is always willing and able to stay with her at the hospital overnight because it allows me to be home at night with Bentley since he isn't sleeping through the night yet and still nursing. We were so relieved to be out in time for Christmas!
ABOUT A WEEK AFTER HER BIOPSY, WE RECEIVED A CALL FROM HER DOCTOR WHO SHARED THE WONDERFUL NEWS THAT HER BONE MARROW WAS COMPLETELY CLEAR! MEANING, ABSOLUTELY NO RESIDUAL IMMATURE (LEUKEMIA) CELLS WERE LEFT (THIS WAS THE GOAL OF THE INTENSE CHEMO DURING CONSOLIDATION) - WE ALL BREATHED A HUGE SIGH OF RELIEF!! If her biopsy didn't come back clear we would have had to either repeat the Consolidation phase again, or start to consider a bone marrow transplant - neither of which we were excited about.
***We were delayed 3 weeks before we could start her next round due to her counts not being high enough. Though she was Neutropenic at one point, she wasn't the entire time she was delayed. The other 2 weeks they just weren't as high as they needed to be.They have to be a certain number for her to receive the chemo. I was very frustrated because I just wanted to get this phase over with! Its a lot to coordinate schedules and babysitters for our other 2 kids when I am at the hospital with Addie. As you can see by the photo, though we were delayed, Addie was feeling good!Round 2 (Checked in 1/24, Released 1/27 at 3pm) - Same process as last, only this time she didn't need any procedures. They hung the Chemo once her urine levels were good and away we went! Addie wasn't as cooperative this time with eating / drinking as she was the first time. We gave her a free pass for being a little moody and hard to handle at times since they were pumping her little body with straight poison. She had some 4 legged friends to visit her as well as Spiderman! The Child Life group at the hospital is so wonderful with keeping her busy with crafts, toys and games and just their presence....we love our friends at Child Life and Addie has really taken to them and is very comfortable and happy when they are around. We decided to keep her in her hospital room instead of letting her walk the halls and visit the play room since we had heard that the Pediatric Floor was over-crowded and full of Flu and Respiratory illnesses going on. Better to be safe than sorry. Addie didn't clear as quickly as last time, but it was still faster than the average so no complaints here. I will say that it is very frustrating waiting and hoping for her levels to clear...its kind of like watching paint dry - especially since they are only checking at certain times.
We were gifted Frozen on Ice tickets from the Clinic and were so happy we were able to make the show in between her hospital stays. Addie had a great time and although I was paranoid of all the germs and people around us and hand-sanitizing every 2 seconds - it was nice to have a "normal" family outing and just enjoy ourselves. Although we begged Louie to join - he preferred to stay back - can't blame him haha.
Round 3 (Checked in 2/7, Released 2/9 at 11:30pm) - This round started with another spinal tap procedure but thankfully no biopsy. I stayed in there with her again - Nick was on a business trip and Dan stayed home with Louie (no school due to snow) and Bentley. Her sedation went well and her doc was in and out with the spinal in under 10 minutes. Addie came out of sedation as she always does - silly and hungry! Though we laugh about it when she wakes up at how Mommy has 2 heads and everything I say is hysterical to her - I will NEVER, I repeat NEVER get use to having to watch her be put under anesthesia. No parent should ever have to witness this - let along as much as we have had to and will continue to have to for the next year and a half. Totally sucks. Addie spiked a fever about 24 hours after being in the hospital - right around the time her infusion was finishing up. They gave her the normal antibiotic (Ceftriaxone) that they do when we go through the ER. Her ANC was very high (2,700) and we never ended up giving her Tylenol before her fever came down on its own a few hour after it started....her blood and urine cultures didn't show anything, so the docs think it was just something viral. Its crazy how different fevers and treatment of them go when she is Neutropenic (low ANC), and we were just thankful her counts were so high. Other than a little fever scare, The only "excitement" came after her chemo infusion was complete. They told me that there was a part missing or broken on the machine they use to check the Methotrexate levels and they weren't sure when it would be fixed. So for a full 24 hours we had no idea where she stood with the levels, even though they continued to draw blood as per protocol. We grew frustrated as we neared the time in which we COULD potentially go home if her levels were where they needed to be. Crazy enough, they ended up driving her blood samples down to Philadelphia to CHOP to have them check them. Still blows my mind that THIS was their Plan B. We could have been discharged at 10pm but were told we wouldn't hear back from CHOP until 2am. You can imagine the frustration, especially given the fact that the hospital was crawling with flu and germs...we just wanted to get the heck out of there. Nick came at 11pm to stay with her that night so I could head home and just as I was getting to my car he called and said we were getting discharged. Thank God!
Round 4 (Checked in 2/21, Released 2/24 at 9am) - This round was easily the roughest on Addie - most likely because it was the 4th time of having that nasty stuff put into her body. She vomited once while her Dad was with her and she barely ate or drank anything the whole time she was there. She peed a lot thanks to the Sodium Bicarbonate but had trouble pooping (sorry for the TMI) - resulting in her levels not decreasing as quickly as in the past. Its always frustrating on Nick and I because we can't push her too hard to eat or drink especially when she is feeling so sick - but we just want to get her the heck out of there and home as fast as possible. As I said in the past, protocol only calls for them to take blood to test her levels every 6 hours...so even after she finally poo'd Friday around 6pm, we had to wait until early the next morning for her next blood draw - even though we were confident it was enough to finally be low enough to clear and safe to go home. She was FINALLY discharged early Saturday morning and we said PEACE OUT to Interim-Maintenance and the Hospital (hopefully) for scheduled in-patient treatments! We now have a nice 3 week break from Chemo and a good opportunity for her numbers to skyrocket and be ready for our next phase in Delayed Intensification - and her body will need the rest. Its going to be a rough one on her (the treatment is a combo of Phase 1+2) between weekly spinal taps, intense chemo, steroids (UGH), and low counts equaling more blood transfusions and high-risk for fevers. Thank you for continuing to keep my girl in your prayers. Please pray that the next 3 weeks she stays healthy and enjoys a nice break so she can continue to dance everyday!
XO,
