Quote of the day: "We are each of us angels, with only one wing. We can only fly by embracing each other." ~ Luciano De Crescenzo
Mattie and I woke up late this morning. He seemed very tired today. I carried him downstairs and was going to make him oatmeal, but he requested homemade waffles instead. So I was happy to grant this request with the notion that he would actually eat something. So out came the waffle maker, flour, and so forth. Mattie ate maybe half a waffle and then complained that his stomach hurt. It appears to me that food doesn't taste right to him now. After breakfast, I administered IV Kytril to Mattie for nausea, and then his G-CSF (which is the white blood cell growth factor). I had wanted Mattie to get changed this morning and out of his pjs but he refused to. In fact, he began to cry with that suggestion. He was very clingy all day (more so than usual), so much so that I wasn't able to take a shower and get dressed until around 2pm.
Mattie and I played with legos, cars, and the board game, Sorry. Mattie actually lost the game today, which is a first. He did not handle losing well. So from there we sat on the couch together and read the special book, Birdscapes. Birdscapes brings the outdoors inside for us. It is a pop-up book with sounds. We can actually hear bird calls on each page, and then identify each bird pictured. Once the book was finished, Mattie literally shut down. He put his head down on the couch and slept for over four hours. When Mattie shuts down and naps, I know something is VERY wrong! Since Mattie was scheduled to see Disney on Ice this evening, I figured resting was a good plan, so that he would have energy later. But a part of me knew the reality of the situation, but I just did not want to accept it. I landed up checking him periodically throughout the day for fevers. In the midst of all of this, I do want to thank our midday helper, Olivia. Thank you Olivia for checking in. It was a slow day today, so I really did not need help, but I so appreciate the offer.
At around 5:30pm, I sat back down near Mattie and this time he did feel hot to me. So I took out every thermometer possible. Since you get a different reading if you take temperatures under the arm, mouth, or ear. Clearly Mattie was burning up and had an 102 degree fever. I immediately called the HEM/ONC on call doctor, and Dr. Abu-Ghosh told me to bring Mattie into the PICU. So at that point, I had to call Peter and start packing. Then I had to break the news to Mattie that he wasn't going to see Disney on Ice with his three friends from SSSAS. We only told Mattie about the show yesterday, even through Jenny (Mattie's art therapist) gave me the tickets last week. We did not want Mattie to get his hopes up, only to be crushed if he got sick. But Mattie was doing well last night, so Peter and I told him. Major mistake! When Mattie heard he was going back to the hospital tonight he went absolutely hysterical. He was crying and kept saying he was "disappointed." He was looking forward to this fun event, and especially seeing his friends. It was the kind of crying that was heartbreaking to listen to. Not whining or complaining, but sheer disppointment that he was sick and couldn't do something that was normal. At first I was agitated by all of this. I frankly did not want to pack up and go to the hospital either, and I was getting stressed out by the fact that I had to put things together quickly to get him to the hospital for IV antibiotics (there is a crucial one hour period of time in which antibiotics need to be administered after the development of a neutropenic fever). But then I stopped what I was doing, and sat next to Mattie. What he needed was someone to validate his disappointment and to know that I heard him and could imagine how he felt. Once I listened, and reflected on how he felt, this dissipated his reaction. I could totally understand how he felt, and the fact that he did not go to the show tonight weighs heavily on Peter and I.
When we got to the hospital, mind you it was 7pm, we bumped into Jey, Mattie's 'big brother.' Jey let us know that Brandon (Mattie's big buddy) was also in the hospital. Brandon is having an appendicitis issue. In fact, Toni, Brandon's mom, called me in Mattie's room to check in on us since Linda told her that Mattie was also admitted. Quite a network of folks here, no?
As Mattie checked into the PICU, I saw Tricia (one of our favorite HEM/ONC nurses). I waved her over, and though she wasn't assigned to Mattie, she helped us check in and get Mattie's blood cultures started. Tricia technically gets off her shift at 7pm, but she worked with us until 8pm. I don't forget moments of kindness like this. Mattie noticed that there were a pile of toys on his bed when he entered the room. Linda struck again, and left him things that really interested him! Linda even wrote a note on Mattie's dry erase board welcoming him back and telling him how sorry she was that he is sick. I literally e-mailed Linda before I left our house, and she mobilized forces before leaving for the day.
Mattie is NOT feeling well tonight. I can always tell because he is lethargic and he is complaining of intense stomach pain. He is now on antibiotics and IV fluids. He needs a blood transfusion tonight since his hemoglobin level is extremely low. Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs. So in essence Mattie is anemic. They are trying to figure out what pre-medications to give Mattie before he receives blood products, since Mattie is known to have allergic reactions to these infusions. They wanted to give him Vistaril tonight as a pre-medication, but I sent up the red flag, since I know there are only TWO vials of this medication in the entire hospital, and we need to conserve this supply for MTP-PE administrations. So the doctors are trying to figure out alternative premedications. As I write the blog tonight, Mattie is resting, but moaning in pain. It is disconcerting to listen to. Even if Mattie loses the fever, we will be here for several days, because they will not allow Mattie to be discharged until his white blood cell count meets a certain level, usually 500. Right now his Absolute Neutrophil (the number of neutrophils present in the blood, and neutrophils are a type of white blood cell that fights against infection) Count is zero.
You may recall we just left the hospital on saturday afternoon. Peter and I can't believe we are back again on one hand, but on the other hand we remember what happened in December when ifosfamide and etoposide were administered, Mattie got very sick three days after infusion. None the less, as Peter says, this is "depressing." When you can't control your life, you are sleep deprived and riding a constant emotional rollercoaster, all of this is sometimes hard to take. If this (cancer) were happening to me, I probably would have cracked up a long time ago, but Peter and I know we have to keep it together to support Mattie. I end tonight with two e-mails I received today.
Charlie, my former student and now friend, wrote, "Once again I am awed by the outpouring of love and support that surrounds your family. That willingness to give, to help, to share time, attention and caring in whatever way it is needed. Ann and Ellen teaming up to take care of both Mattie's needs and yours even though I am not sure you knew exactly what you needed at the time. I can tell that the walk, the lunch and the opportunity to be "off call" temporarily made a huge difference. It was lovely to read Whitney's note too and see that she understood the gift that Mattie gave her with his straightforward comments about missing her. That's the sort of thing many adults tend to brush off, not realizing what a gift we are given when our presence is valued and our absence creates a hole in someone else's space."
The second e-mail came from Rev. Rosemary Beales. SSSAS' lower school chaplain. Rosemary sent us this lovely prayer and wish for us this evening. Thank you Rosemary for your support and for praying for Mattie each week during chapel.From the New Zealand Prayer Book:
Lord, it is night.
The night is for stillness.
Let us be still in the presence of God.
It is night after a long day.
What has been done has been done.
What has not been done has not been done.
Let it be.
The night is dark.
Let our fears of the darkness of the world and of our own lives rest in you.
The night is quiet.
Let the quietness of your peace enfold us, all dear to us, and all who have no peace.
The night heralds the dawn.
Let us look expectantly to a new day, new joys, new possibilities.
In your name we pray. Amen.
1 comment:
Vicki~~I am so sorry to hear that Mattie is sick. David did get very neutropenic with the ifos/etop cocktail, but we were blessed that he never once got a fever. His ANC was always 0; but the GCSF took care of that pretty fast. He did need the blood transfusions, but; again; no fever. I understand Mattie having a meltdown with having to go back. You did the right thing in listening and validating his feelings. Good job! I know how hard it is when you don't want to go either, and you have to deal with him, too. Been there, done that! Sucks!! But you are doing a great job. Keep it up.
Yes, David is homeschooled. He always has been. He is a year ahead of his age; he is a sophomore in High School at 14. I feel he is getting a better education, especially at this point in time. He would have totally lost last year! My girls were also homeschooled, and they graduated at age 16 and 17. I will pray you find the right answer for Mattie's schooling. It is not an easy decision, and homeschooling is not for everybody. Good luck.
Well, you have a good evening, and I am praying that Mattie kicks this fever quickly, and his counts go up rapidly. God bless you, my friend.
Kristi
Post a Comment