We are currently in the hospital (more on that later), so I have a little downtime to update and give a recap of the last 29 days. They warned us this phase would be rough - and man they weren't joking! Delayed Intensification is essentially a combination of the very first phase and second phase of treatment COMBINED. That means intense chemo and the comeback of steroids - my favorite (NOT). This phase has been hard on Addie to say the least. It was definitely weird to see her so "down" during her weeks of treatment. We are use to her being high energy, non-stop and dancing every second of the day and that hasn't been the case lately. Overall she was her happy self, and she definitely had a lot of days where her energy level was where it has been - through the damn roof! But overall, all the chemo definitely weakened her, made her vomit a few times and more sleepy than she's been in months. She would ask to go to bed at night, lay on the couch throughout the day and was nauseous quite often. She would be dancing one minute, then want to lay on the couch the next, run to the bathroom to vomit, and then want to go back to dancing, all within 10 minutes - no joke. I feel like she's grown up so much in the last few weeks...and has this new maturity about her. I both love it and hate it at the same time. I love it because she's getting "easier" to handle...meaning, less talk back and challenging me and more understanding and cooperative. She lets me know when she's nauseous and when she's about to be sick, and there have been some nights that we just sit at the toilet and she's crying that she just wants to get sick so she will feel better so she can sleep. Those are the moments I hate it because I feel like I'm sitting there with my teenage daughter, not my 4 year old. She shouldn't have to grow up more quickly than other 4 year olds. She shouldn't have to know at this age that if she just vomits all the poison out, she will feel better. She shouldn't have to say "Mom, I wish I could go to Target with you, but I know my counts are down so I will stay home". Its just not fair. The doctors warned us that through Delayed Intensification, all the chemo she would be getting would wipe out her immune system making her susceptible for fevers and the possible need for blood / platelets. The crazy thing is, it usually takes about 7-10 days for the chemo to take affect on her system and drop her counts. Needless to say, I basically have been holding my breath this entire last month just waiting for the day she would spike a fever. We haven't gone anywhere with the exception of Easter when she was with family all day-I didn't have it in me to keep her home on a day she knew everyone would be together and having Easter Egg hunt - and it turned out to be a beautiful day!
Her first week started out with a Spinal Tap, followed by 2 IV chemos and Day 1 of 7 of steroids- ALL ON THE SAME DAY. I am always in awe of how such a little body could endure so damn much. And while Spinal Taps have become pretty "routine" at this point, I will never get use to or be comfortable with her being put under anesthesia. She is actually to the point now too where she doesn't like it either. She hates the feeling of being "loopy" and actually cries as soon as she feels it. Its heartbreaking to say the least. Though she always wakes up happy, and silly and hungry! That was all on a Wednesday. That Saturday we had to start another chemo and this was is to be given via shot in her leg every other day for a total of 6 shots. This is actually an alternative chemo that she has to get due to the fact that she had an allergic reaction to the typical IV chemo that is normally given. We actually had to be admitted to the hospital for the day to get her first one, since she had to start on the weekend when the clinic was closed. We put numbing cream on her thigh, the same one that we use to numb her port before accessing her - but she still hates the shot and I don't blame her. Regardless if she can feel it or not, to watch a needle go in your leg is scary. Thankfully, up to this point she hasn't needed any platelets or blood transfusions, and the steroids haven't been as bad as I was expecting. The first week she only had one I'll say "moody" day, but other than that was a total angel. The second time she was on them after a week break, they took on more of an effect. Her face and belly are a little puffy at the moment and she has been ravenous! The funny thing is, the things she craves are all pretty decent nutrition-wise. She makes up for always wanting junk when she isn't on them - haha.
This past Wednesday was just a check-up and break from chemo for a week so her counts can recover to be ready for the 2nd Half of the phase to start next week. They took her temperature as they always do when we get there and it was at 99.7 and the doctor said her heart rate was a little elevated, which told her that her body was trying to fight a fever. They gave her some fluids to help her heart rate come down, but as her heart rate came down, her temperature went up =(. She got up to 101, so they immediately took blood cultures and admitted us to the pediatric floor to start the antibiotics - all typical protocol anytime she gets a fever. The blood cultures are watched for 24 hours to see if anything grows-but luckily those came back negative. They also swabbed her for the flu and while she tested negative for the flu, she tested positive for the Rhinovirus and Enterovirus...both are usually seen together and are basically the common cold. No antibiotics are used to treat it - it just has to run its course. On Wednesday her ANC was 160. She never spiked a fever again, though her ANC fell to 140. The doctors want to see it coming up a good amount before we can be discharged. Her Platelets and Hemoglobin are both holding steady and are high, so we are praying they stick. Today(Friday) Addie's ANC shot up to 462!! We are waiting for her doctor to let us know if we can leave as I type this so fingers crossed!
The second part of Delayed Intensification begins on Wednesday so long as her counts are where they need to be. If they are lower than they need to be, then they will delay her by a week. We were told that most kids are delayed in-between this phase and to expect it. But being that her Hemoglobin and Platelets are holding steady and her ANC is coming up, I am hopeful we can start on time! Maintenance is SO close, I can taste it haha. I am praying she makes counts so we can start the 2nd half and be on our way to smooth sailing (fingers crossed) in Maintenance. The next few weeks will be rough like the last, so I just want to get it over with!
Thank you for reading and for the prayers....we love you guys!
xo
