OK, with this provocative heading, I’ll get right to the heart of the matter and save you from needing to experience this firsthand. I don’t recommend it.
On Saturday night (yes, the very same night Travis had been feeling GREAT and even wrote his happy rainbow email) at about 10:00 PM, Travis suddenly woke up coughing and miserable. He had been given one of the important BMT-related drugs intravenously about 30 minutes earlier (that he had tolerated very well orally earlier). I was with him that evening and Joe had just returned to the RM House. Everything happened very quickly – the room was dark and I raced to Travis’ bedside, unfortunately on the side away from the nurse call button where Travis had stood up. He was having severe stomach discomfort and I finally figured out how to hold him with one hand (while he was losing body fluids from three ends) and stretch to reach the button. A nurse finally came in after an excruciating 2 calls, and helped me, in the dark, with Travis’ needs. When a third nurse came in and turned on the light, we could immediately see that Travis’ lips were extremely swollen, hands and belly were bright red, and about that same time he began crying that he couldn’t breathe! Yes, folks, this is called Anaphylactic Shock. It was my first (and only, I pray) time hearing "Code Red, Code Red" on my child’s behalf over the hospital intercom system. Within seconds, Travis’ room had 15 medical staff squeezed in -- some working, many watching. I cried out to someone to get Joe over to the hospital immediately. I was trying to calm Travis down as he was trying to tell us he couldn’t breathe and his throat was closing up. He was scared. I was too, but acted "relatively" calm until he said "Mommy, I’m never going to breathe again." Then I knew how scared he was, and it broke me. It was like a horrible scene from a movie. And I was conscious of watching Travis and me in it.
After many long minutes (too long for my satisfaction), he was given the right drugs (shots and other IV meds) to stop the severe allergic reaction, and began very, very slowly to be able to breathe somewhat easier with the oxygen mask on. Joe arrived during the madness and was very calm. Fortunately, things were pretty well under control by that time. Travis was moved in to a clean bed and wheeled to Intensive Care for the night. I stayed with him, my butt on a chair and my head on his bed most of the night until I curled up on the end of his bed. Like being in a fishbowl. The glass doors had to be closed, to keep him in isolation, but they could see him at all times. He (and therefore, I) was awakened every hour to check his vital signs and shine a flashlight in his eyes to make sure he was still OK. I figured, "WHATEVER IT TAKES -- JUST DO IT" to make sure he is going to be all right.
Joe went back up to Travis’ isolation room and helped them take EVERYTHING out (now it was midnight), including posters and pictures on walls, so they could completely sanitize the room again (wash walls, strip wax off the floor and rewax, etc). He was equally as exhausted, mentally and physically.
The good news is, the oxygen support was removed by middle of the night, and by mid-morning his face had only a bit of swelling left as a reminder (normal by that evening). He rebounded AMAZINGLY well. Children are so incredible! We got back to his bare, clean room at about 4:30 PM, on Rosh Hashanah eve. He was so happy to be "home" and out of ICU (no computer, no Nintendo there!)! Me, too. Back to our cocoon… The doctors are pretty sure that this episode will not affect the marrow doing its work. "It’s pretty hearty stuff", they say. Let’s hope so.
The best news is that today, 9/21, was WONDERFUL. Travis had tremendous energy. He was so excited to see Spencer and my parents, who had come in from Duluth and arrived just when Travis got back in his room. It was a big boost for him. So today he was delighted to spend time with them (we are allowed 5 designated people in the isolation room with Travis – Joe, Spencer and me, and then my folks, who will be here on and off to help out). Travis also had 45 delightful minutes of "school" with the hospital teacher, which was followed by the physical therapist, who brought an exercise bike into Travis’ room (which now stays here). He rode for 5 minutes straight twice today (more than I feel like doing) and also played "volleyball" with a beach ball over his bed with the therapist. She was great at getting him up and moving and having fun. It was so wonderful to see!
Our evening tonight was delightful. At first, Travis became really sad that our family (except he and I) was all going to services for Rosh Hashanah and having a special dinner. Two things especially bothered him. First, he can only eat food prepared by the hospital or by Joe and me. Secondly, no one but Travis can eat in his room. So he was really sad that he would have to eat his Rosh Hashanah dinner all by himself. Just as we solved it by my drawing a picture of my dinner so I could "eat" with him, the nurse took pity on us, paged the doctor, and received special permission to let me eat with Travis in his room. It was so touching. Travis was ELATED. (Me – tears again.) I heated up a delicious dinner prepared and delivered by someone we just met yesterday – a Cantor from a nearby synagogue – who wanted us to have a homemade holiday meal. (Joe and Spencer and I ate the dinner last night together in the family lounge area, but there was plenty left over!). So Travis and I giggled and laughed and cuddled during our dinner to remember.
Our evening became more magical as we received a Fed Ex package (delivered late) from Travis’ singing idol, Debbie Friedman (an incredibly popular Jewish pop singer)! She had called him personally before he left home for the BMT, when she learned of his tremendous love of her music. We were dumbfounded when we opened up the package and saw a cassette tape, and a note from Debbie explaining that this is the rough cut from her upcoming CD, and that only she, her producer and TRAVIS has it! Travis was MEZMERIZED as we immediately listened to the beautiful music. We decided it was a definite "4 thumbs up (and more, if we’d had them). Travis then even spoke to Debbie on the phone to thank her!!! Travis still wanted to find a special way to thank Debbie, so we brainstormed, and he decided to make HER a tape! Not wanting to let the moment pass, I raced out and got a blank one from the nurse’s station (thank you, thank you) and Travis promptly recorded the tape of a lifetime (Travis singing many of Debbie’s songs!). I’m torn between sending it right away and finding a way to copy it first! Travis said many beautiful things to Debbie in between his songs. Here’s one example: he said that if Debbie is ever sad or afraid, she can carry this tape with her everywhere, and that she should just remember, he is with her all the time. (Melt...) Can you believe this child? (-: (OK, any of you who know Debbie Friedman – DON’T tell her about Travis’ tape. This is a surprise!!!).
Lastly, I know these updates are to keep you posted on Travis’ progress, but I have to record how it felt to see my little Spencer, after he’d been in Duluth for 10 days. After a few days, my heart was hurting so badly for him – I missed him so much (as did Travis and Joe). The only thing that let us keep him there was the fact that he was having the time of his life, being the center of attention and seeing and doing all sorts of wonderful things. And, we knew we HAD to focus on Travis’ care, especially this first week or so. Anyway, FINALLY he came back… I ran to the Ronald McDonald House and saw his little face inside the window. He began banging on the window, smiling ear to ear and shouting "Mamma! Mamma!" as I fumbled with my key to get in before we both broke through the window. This was the most incredible hug! It feels so wonderful to have our family together again – so complete. It brings new challenges, though, as we now have to figure out how to care for both boys separately and manage the "trade off" times. But it’s a challenge I welcome – I don’t want to be without Spencer again like that for quite awhile. He was swinging outside the RM House as we played together this morning – and he insisted on singing "songs that will help Travis". His rendition (that we sang over and over) was: "Hi Ho, Hi Ho; Travis got marrow! And Hi Ho, Hi Ho, it was 4 days ago!". I was beaming at this child. He is struggling for his own attention, yet knowing how important it is for us all to focus on helping Travis. Spencer’s way has been to "use his good behavior" and his incredible sense of humor and playfulness. What a tremendous help that has been and will be.
So that’s the bad and the good of life up here… I’m over this latest shell shock and so glad I can report good news at this point. The harsh reality of what we face comes to me as I write, listening to our "neighbor" patient in the next room – a tiny baby – who must be a BMT patient since s/he’s in this unit – crying and crying. I wish this place was shut down because of no further need.
The baby is quiet now. Comfortable, I hope. As Travis is – I hear his relaxed sighs now and then.
More than ever, we are wishing you all a happy, healthy New Year (and that’s whether you celebrate this holiday or not!). Thank you for your prayers of health and peace.
Love,
Melanie, Joe, Travis and Spencer
P.S. Rest assured, I’m getting frequent exercise. Every time I sit down, cuddle up with the computer, or even, heaven forbid, sleep, one of Travis’ medicine pumps beeps from across the room. Not aerobic, but maybe like wind sprints? (I’m not complaining, mind you. Just documenting, right?)