Hi Everyone, Annie here. Today we had our first clinic appointment. We arrived around 12 noon to the beautiful Buerger Center (new building where clinic is located).
Nutrition
We were greeted by the clinic staff and led to our room, where our nurse accessed Blaise's port and drew labs. Our main concern as of late has been his nutrition. He is disinterested in eating, and Andrew and I feel this is separate from any chemo related nausea, more related to being in and out of the hospital the last 3 weeks, NPO for tests, and just being out of his routine. We relayed these concerns to our nurse and our Oncology Fellow. They agreed with our concerns and we made a plan with our nutritionist as well to start overnight tube feeds- starting tomorrow! The hope is that these feeds will re-stimulate Blaise's desire to eat- which makes sense if you think about it. Over the last few days, we've seen Blaise the most like himself after he eats something that could be construed as an actual meal- he just is not doing it in a frequency that will promote healing and continued growth- everything that he needs going into surgery.
"Counts"
Another reason we will go to clinic at least once during our "off week" is to get his "counts". This basically means a glimpse into his immune system. We can predict that his immune system will be at his lowest, or nadir, approximately 7-10 days after chemotherapy. So, I was very surprised to see how low he was today. I knew what we were signing up for by giving him chemo, but when I saw his counts, it hit me like a ton of bricks. These numbers that I used to pass back and forth in nursing report on patients, numbers I cared about as a charge nurse trying to predict flow in and out, and finally as an operations nurse trying to anticipate admissions and discharges on a weekly basis. These numbers now were about my kid. MY KID. In my head I immediately started thinking about the bubble I would build around my child- exactly what I would tell parents not to do as I taught them how to care for their child with cancer. We are going to the circus Wednesday- and Andrew and I both considered not going once we saw his counts. We were told by our dear friend as well as our care team that we should proceed with our plans, because his development and pleasure also need to be factored into this equation.
But, back to those counts- so here they are (above) and basically what that means is that his immune system is way down and we will need to return to clinic Thursday to likely get a blood transfusion. I will say that this part did not phase me at all- but created panic when shared with loved ones. This is a very expected and normal reaction to the chemotherapy we are giving him. He will need blood and platelet transfusions throughout this journey. For those of you asking "what blood type is he?!?! Can we do direct donations!??" The answer is yes, however, we would prefer that you simply go to a blood drive and donate, rather than donate "just for Blaise". It is more efficient for all to ensure a plentiful supply in American Red Cross than to donate just for our son. I have full faith in the current screening processes in blood banks these days and particularly at CHOP. So- thank you for your donation but no need to make it just for Blaise- it is better to help everyone who needs a transfusion.
Anyway, what does this mean for our future? This, I am not sure of. Blaise's behavior has been pretty good considering his counts were pretty low- as in, not lethargic related to anemia, etc. One could assume that post this first cycle is when his immune system is at it's most robust, so to need a transfusion after one cycle did raise a red flag in my head- will his counts drop quicker as his body begins to tire and really feel these compressed chemo intervals? Only time will tell, but we are in the best place we can be in.
Speaking of that best place-
I think many of you can attest to this, I was one of those people who truly loved my job. It was busy and time consuming, but you can only commit to a job- career- like that if its true love and something you believe in. Well, pediatric oncology was that for me. And in the midst of all this, I have not had a lot of time to truly digest this piece of change, but this past weekend and week, I have thought more about this. I know that I will still have a career in CHOP as a nursing leader when I am ready- but the pivot away from oncology- one that I personally need to take, is heartbreaking. Not as heartbreaking as a 4 year old with cancer, but still, in those selfish pieces of my soul- I get mad. I get mad that my family is statistically unlucky and that my child whose mom is a pediatric oncology nurse gets to have cancer. And I get mad that something I was so good at, is no longer something I can do every day. I miss my co-workers and friends. BUT... when something sucks- you need to look at the positive, and here it is: I cannot imagine a better place for my child to be treated. My co-workers- people who I probably casually referred to as "I would trust you with my child" now actually are trusted with my child. And my small piece of this story- the career- actually helps support that case. Because I believe in that place, and all those people and now they will cure my son.
Until next time, enjoy some pictures!
