I tell you, nothing slows this kid down, not even 3 cycles of high dose Chemo or Neutropenia! With me working full time during the week, I don’t get as much one on one time with Caleb, so we took advantage and had an amazing few days together! Caleb teaches me something new just about everyday and this weekend was no exception. As I sit here thinking about how to recap the weekend there are two things I have learned spending 3 days alone with Caleb as we begin the last part of Cycle 3 (aka the neutropenic, isolation and sanitation phase). One is family! I am SO VERY THANKFUL to have the ability to be here as a family, helping Caleb tackle this TOGETHER. Two is a stronger LOVE and RESPECT for Christina! Let me be the first to tell you Christina doesn’t give herself enough credit in her blog posts about this time of each cycle, so I will! It’s been amazing forgetting about everything else and just being a kid again with him (yeah I am as amazed as you are that we made it through all three days without calling in backup haha). What Christina doesn’t share what a monumental task it is finding things to fill the hours and the days, especially these days, 15 days of every cyle, when Caleb is neutropenic (more on neutropenia in a minute). She is absolutely amazing and I am in awe of all she does to keep Caleb entertained, teach him, keep her cool during the 50 mood swings that happen each day because he doesn’t know how to express that he doesn’t feel good and comfort him as he struggles to understand why he doesn’t feel good. She is an amazing mom, wife, caregiver, teacher, friend and so much more! So don’t let her fool you, behind every good story there is probably a hard moment and I for one can appreciate that so much more!
Neutropenia is a term I had never heard of before we began this journey and one I never imagined would come with so much unknown, anxiety, worry, preparation and prevention. Everyone has read Christina post about Calebs blood counts being low, his ANC (Absolute Neutrophil Count) being 0 or Caleb being Neutropenic. She has also touched on the different scenarios that can happen when his counts are considered low (Fever, risk of infection, emergency trips to St. Jude) all ultimately ending up in hospitalization. In fact, Caleb has been hospitalized one extra time in both of the first two cycles due to fever and infection which makes us very nervous for the birthday party he has coming up! (we are in full on prevention mode right now). So tonight, in addition to sharing a little update on our antics for the weekend, I thought I would share with everyone what Neutropenic means for Caleb and what Neutropenic means for us, by giving you a little behind the scenes view of the weekend.
Let’s rewind a few days to Thursday. Caleb was discharged around 6:30pm and usually we leave the hospital in a pretty rough mood since each hospital stay ends with him getting his “buddy” out and getting an immune booster shot in his leg. However, you may have read how the “Happy Cart” luckily saved the night by coming by just in the nick of time and in an instant turned Caleb’s mood around!
Side note, the volunteers who run the cart are awesome! In a split second they figure out what the kids might like and quickly point them to those areas of the cart. Caleb got a batman car, a mystery superhero can and a Lighting McQueen floating car (all based on the batman clothes he had on, his cars shoes and the superhero’s on the pillow case he was carrying). Every toy is brand new and some of them are as much as $30-$40 new. If you ever want to know what else to donate to St. Jude or any children’s hospital, it would be new toys that are relevant to the kids of shows/movies the kids watch. Without them it could have been a really rough night (he hates getting that last shot and his buddy out just before we leave).
As most of you know, Christina left a little earlier on Thursday to head back to Tampa to pick up Tyler from his week long spring break. So after being saved by the Happy Cart Caleb and I headed home for a few days of daddy/Caleb bonding time. After a quick stop at Taco Bell, aka the quesadilla store, and finding out he follows in his moms footsteps for the love of the Bell (so much so he asked for it again on Sunday night before Christina and Tyler got home!), Caleb was pretty tired and passed out pretty quick.
Friday would then be the last day we could do much outside the apartment before his counts would begin to drop. So we took advantage of the really nice day and played outside as much as possible, fell asleep in the car running a couple errands, talked dad into a couple new toys with his bald head pouty face and capped it off with pizza, staying up a little late watching a movie and Caleb deciding he was a big boy and didn’t need any help taking a bath (which he then closed the door and said he would surprise me)….This kid!……an all around awesome day!
Saturday then started off a little rough as Caleb woke up feeling a little sick and I was definetly worried he wasn’t going to have a good day. So we rested a little, ate some breakfast and took his meds and he bounced back twice as strong! After that we built a train, built a car, went outside for a couple minutes to blow bubbles before he got tired again and came inside to rest….
After watching another movie we played inside with those new toys from yesterday (including bowling!), made Jello for a snack, played games, made homemade “lunchables” for dinner (cheese, peperoni, chips and the jello) and stayed up a little late again playing with his Magic Track cars!
(To be continued below the videos)
Shew….that’s just two days…I’m tired just typing that out! Don’t get me wrong, we had an absolute blast and I loved every second of it. Just a little behind the scenes view of the next 15 days as we stay in the apartment, get very creative on things to do and follow the guidelines of neutropenia. Those guidelines also include: no large crowds, no public places, if we absolutely have to he can wear a mask but we try not to, we monitor temperature twice a day, no hand towels, no sharing towels, bath towels used only once, no food out for more than 20 minutes or it has to be thrown away, constant handwashing and magic soap, new toothbrush every day, mouth wash 3 times a day and if he shows a temp above 99.9 we are going straight to St. Jude to be admitted. Which despite all of the above and all you will read below, we have ended up back in the hospital both of the first two cycles. He literally can’t fight off the bacteria that is naturally on our body every day, much less the smallest scrape of the slightest cold (also makes me appreciate the miracle our bodies balance for us every day we open our eyes)!
Unfortunately for us at the end of each of these days our night doesn’t end at bedtime. When Caleb is neutropenic we also have to be very careful with germs and infection. As Christina has mentioned in other posts anyone who comes to see him during this time has to change clothes when coming in the apartment and wash/sanitize their hands, arms and face, no shoes in the apartment and footie socks over your socks and if you may have the potential to have come in contact with someone sick you cannot come over for at least 24 hours and wear a mask until the 48 hour mark. In addition, Tyler has to change clothes at the door after school each day and sanitize the same way or take an immediate bath. But what we likely haven’t shared is what we also do to the apartment each night during these 15 days. After the kids are asleep we go into cleaning and sanitation mode, since I was doing it by myself this weekend I took a couple pics to share, this is where having a 600 sq ft apartment actually comes in handy! First picture is the aresonal of tools for the evening. All surfaces are sanitized, all door handles, cabinet handles and other handles are sanitized, all light switches are sanitized, all furniture is wiped down, iPad is sanitized, all toys that were on the floor or touched are sanitized, all floors/rugs are vacuumed with a HEPA vacuum and then wet swiffered and most nights all laundry is also done.
Check out the bottom of this post for a little more detail on what we mean by blood counts and neutropenia.
On the bright side, the apartment is immaculate at the end of every day and we wake up to a nice clean living space every day, downside is it takes 2 people about an hour to do. Honestly it wouldn’t matter if we had to throw away everything every day and start over, we would go to the moon and back to keep him as safe as humanly possible to keep fighting like the superhero that he is!
Sunday, Caleb woke up a little early got his iPad and hung out on the couch. When I woke up he told me he was being quiet so daddy could sleep (this kid!). So I treated him to his fav breakfast, jelly donut holes from Dunkin Donuts. When we got back I asked him what he wanted to do and he said play with play doh. Couldn’t say no to that, time to be a kid again! For the next 2.5 hours we pretty much built everything possible using the play doh tools that we had! The first picture is how it started and the last is how it ended (yet again, this kid blows me away!).
We rested again with a couple episodes of his fav. TV shows while daddy enjoyed a little golf on his iPad and then Amazon showed up. Little did Caleb know but Grebbie had ordered some additional magic track for his set, bringing his total to 6 cars and 72 feet of track. You would have thought there were gold bars inside the box from Amazon. And he wanted to do everything himself, saying the whole time…”I’m so excited” and “This is the first time I’m doing this” (referring to opening the packages of track with a dull pair of sizzors) and “When Tylers here I am going to share with him” (This kid!). I couldn’t have asked for a better way to end our weekend together and will forever cherish these moments for the rest of my life!!!
To help with context in this post and future posts, here are a few more details to remember:
- There are 3 parts of the blood and immune system we watch carefully and essentially drive when each step is taken:
- Hemoglobin (Hgb): AKA Red Blood Cell count, responsible for delivering oxygen to the blood. (Hgb of 11.5 or higher is normal)
- Platlelets: Tiny blood cells that help your body form clots to stop bleeding. (Platelets above 190 are normal)
- ANC : AKA Absolute Neutrophil Count or White Blood Cells, responsible for helping your body fight off infection. (ANC above 1500 is normal)
- Caleb has 5 rounds of Chemotherapy Treatments, each round is 35 days long and consists of:
- Days 1-7: At home Chemo (aka Alisertib)
- Days 8-14: rest days, where his counts drop some but typically not to 0.
- Days 15-19: High Dose Chemo given in the Hospital
- Days 20-35: “Rest days”, with the exception of day 22 where he gets a single chemo boost using the drug vincristine.
- The next round nor the next step in each round can start until Caleb meets the following criteria:
- ANC above 500
- Hgb above 8
- Platelets above 20
Around day 20 of each cycle Caleb’s counts begin to “tank” as the doctors refer to it. This means the Chemo he received on Day 15 has begun effecting his bone marrow and is essentially keeping it from producing the Hgb, Platelets and Neutrophils he needs to fight infection and keep the balance our bodies maintain everyday without knowing it. Yep, it takes 5-10 days for the first dose to begin effecting him and it essentially compounds with the previous Chemo treatments to progressively make it harder and harder for his body to recover each time. This is why the first 20 days or so of each round you see us doing as much as we can out of the apartment. When his ANC is above 500 Caleb can pretty much do anything with the exception of very large crowds. However, on day 20 we begin the “rest period”, AKA isolation and sanitation, phase of each round.
Stay tuned for my next post on Genetics and hopefully a little more details on our results.