It is Day +4, four days after the stem cell transplant. Times are still challenging but we continue to make it through each day…looking forward to each new day as we get closer to Ryleigh’s stem cells finding their way to her bone marrow and creating a whole new immune system.
White blood cells (WBCs)are a part of the immune system and help our bodies fight infection. They circulate in the blood so that they can be transported to an area where an infection has developed. Neutrophils are the one of the body’s main defenses against bacteria and these are the most common WBC in the blood. In order for Ryleigh to begin stepping down from isolation she has to have neutrophils at 0.5 or higher for at least two days.
Each morning (4 am to be precise) Ryleigh has blood work done to check her “counts”. These counts are the indicator for how her body is responding to the transplant treatment. Today her counts were:
WBC = 0.1 should be 3.9-10.2
Neutrophils = 0 should be at least 1.0
Hemoglobin = 85 (was 75 yesterday so she had a blood transfusion) should be 117-149
Platelet Count = 161 should be 180-440
Ryleigh is following what is to be expected after mega chemotherapy, transplant, and more chemotherapy. Right after the transplant she was doing really well – chipper, talking, eating, and witty. This is my Ryleigh…coming back to us. But the doctors warned us that it was going to get worse before it got better.
Yesterday things started to take a downwards turn…mouth sores are causing her difficulty with eating anything but soft foods. Ryleigh loves her ketchup but finds it very difficult to eat…but she cannot give it up as her Kraft Dinner would not be the same without it. I took a look in her mouth today and it is worse than I imagined. She is one tough cookie as she is hanging in there. She is getting some pain meds for it which is helping.
Two days ago – Ryleigh spiked a fever (which was expected). Tylenol is helping but she is often shaking and shivering, hallucinating, and sleeping. The last two days the room has been very dark – like a cave. She has not been up much and when she is she needs help.
I have tried to get chores and errands done the best I can. Yesterday, I did not get out of the hospital at all. Chloe had to fend for herself at the apartment – I sure miss her on the days I don’t get to see her.
Chloe is a breath of fresh air when I can break away from the hospital and spend some time. Usually it involves errands or chores but at least we can hang out with each other. Chloe continues to show such maturity and responsibility. She is learning to manage her pain and be more active in her own life. I am so proud of how she is handling the way that our life continually changes. At times, she is wise beyond her years.
Parent’s guilt is never easy to cope with. I struggle with balancing my time for managing the basics and then spending time with both the girls. Chloe does not spend much time at the hospital as Ryleigh is not up for visiting. So, I have to leave Ryleigh to spend time with Chloe. When I am with one, I feel badly I cannot be there for the other. Thankfully, they both realize that I struggle with this and do not hold any resentment towards me or each other.
I spend many moments in Ryleigh’s (recently dark) room wondering if I am doing the best for my girls. I find so much of it hard….making sure I remain calm and patient when I just want to yell and scream. I find it hard (yet helpful) to talk with other parents – they are amazing but yet we all are so tired and frightened for our kids. I find everyday tasks so tiring – shopping, cooking, cleaning, laundry, banking….I find it hard to see Ryleigh all cuddled up in her blanket looking so sickly and she just wants to be left alone. I want to hug her, hold her, comfort her but she is too miserable to have anyone around her. I find it hard to say goodbye to Chloe as I come back to the hospital. Knowing that she is by herself trying to be strong yet yearning to have her sister (and her mom) back home for company and friendship.
We expect the next weeks to challenge our family…but each day we know that this shall pass and we will be on our way to happier and more relaxing times. Even if it is for a moment I will embrace the positive times with my whole heart.