Ty's bimonthly MRI scheduled for this morning has been pushed back until Tuesday. He was doing great on Thursday, so much so that I decided to take him for a walk outside (it was a gorgeous day). We drove to the Mid-Hudson Walkway for a nice walk over the river - Ty told Gavin to "be a good boy because we are doing sumfing special!" I was so happy to be out of the house. I was finding some zen until the ride home undid every bit of de-stressing that took place at the park. I am afraid I may have had him sitting upright in the stroller for too long because he became so congested during the drive home I had to pull over three times in 20 minutes to pull him out of his car seat, give him chest PT and turn him sideways to knock some crap out of his nose and mouth to clear him a little better. This is why we postponed his MRI for Friday. We were hoping that he would clear up over the weekend, so we rescheduled for Tuesday.
Alas... this morning Ty woke up with his eyes crossing. Some of you may remember that this is usually an indication that he is suffering from hydrocephalus, and this usually means that there is a shunt malfunction (that or progressive disease, but we refuse to go there). As I write this - Saturday afternoon - we are in Urgent Care and his CT confirmed that he has hydrocephalus again. We were supposed to be outside enjoying a fundraiser for St. Baldrick's in Rockaway beach with all of our friends. Instead we are in a room with no windows and a very upset little boy. His secretions have been cultured and checked for viruses but all is negative. This leaves us with no understanding why the secretions even exist at this point. I am beyond exhausted from worry and anxiety. We will be sure to keep you posted as we hear more and come up with a plan for next steps. In the meantime, it looks like "Mighty Mikey" and his team have raised more than $60,000 and the event is a big success! Congratulations on a great event, and thank you to all of our friends who were there to represent Ty.
A Day in the Life
Two nights ago, after a long day of work, Lou came home to the chaos that is our life. At bedtime, we whispered to me, “this is something that you should write about for childhood cancer awareness month.” “What?” I really didn’t know what he meant. “This. Today. What just took place from the time I walked in the door until now, and how every day is like this when your kid has cancer.”
It was a totally stressful night, but not very out of the ordinary – he’s right. He came home around 7:30 to a plate of leftovers from the diner in the fridge. I was busy giving Ty his nebulizer while Gavin ran around with no pants on because he had to poop on the potty but was “too scared to go poop.” Then I turned on another loud and obnoxious machine to suction mucus from Ty’s nose and throat while Lou was eating his cold chicken fingers while standing up. The suction catheter goes pretty far down his throat and I called for Lou’s help when it gagged Ty and caused him to throw up all over him and me. Got him all cleaned up, and while he had his shirt off it was a good time to change the dressing on his G-tube and remove the bandaging/take out the needle that was in his mediport since Monday. Donning gloves and manned with a ton of “whisps” (what we call the wipes that break down the glue to make it easier to take off the bandages) I suffered through Ty’s screams and got it all done. We got him in some new PJ’s, disposed of the used needles, prepared six syringes filled with medicine (chemo, antibiotics, pain meds, stuff like that) while Ty complained to Lou that he just wanted to go up to bed with him. Poor Lou never even got to finish eating dinner before he was in bed trying to get him to fall asleep. I had a really hard time getting Gavin off to bed next, and an hour later I went up to see how it was going with Lou. Ty was too congested to sleep and Lou didn’t want to leave him alone, so we called it a night to lay in bed with Ty and listen to his labored breathing. Every hour or so we would flip him over and his entire face and shirt on that side would be soaked from the secretions oozing out of his mouth. We changed his shirt once. Then his pillowcase. This is what catching a cold looks like for Ty.
Oh, and just to keep it interesting, Gavin ended up throwing up that night, too. Six times. I felt like a real beauty the next morning. My shower, although limited to three minutes, was truly dreamy nonetheless. At least I can always count on Gavin to leave something like this around the house that makes me happy.
When Ty had chronic hydrocephalus for months on end. When he had tumor burden. Our daily life was ten times worse than what I described above because we knew there was cancer growing in his body and we felt so helpless. He vomited dozens of times a day and wore a wet cloth on his head that we called a "cold pack" because he had headaches 24/7. The steroids changed the way he looked, made him irritable, made him completely restless and unable to sleep, and they took away his ability to move. I've said it so many times. Childhood cancer isn't bald headed kids playing with toys. It's kids on ventilators. It's kids with amputated limbs. It's kids in wheelchairs. It's kids who lose the ability to speak, to eat, to hear and to see. It's seven kids who die every day.
|Ty with his cold pack under a hat, drinking JUICE (not soda)|
That's all for now. That's our story. I'll leave you with these two photos of Ty. One is from a couple of weeks ago when we brought his wheelchair home (he was excited at the time, but since refuses to go in it). The other is a simple "thank you" for loving Ty. We love you all.