Whoo-Hoo, Look Who's Two!

Here's to another milestone passed - on July 23rd, Benajmin turned 2! And what a miserable day it was. But more on that later. First I need to backtrack to the day after my last post.

You will remember from that post that I was complaining about the problems with Broviac #4 and how they were going to come to a head. Well, I should get a prize for foreseeing the future because less than 24 hours later it popped and that night Benjamin went for emergency surgery to replace it. That's right folks - no joke, Ben is now on Broviac #5. What happened was that with all Ben's moving around the inner tubing of the Broviac got hopelessly twisted and kinked underneath the outer lining. So even though the Broviac looked straight it kept on blocking and when they tried to unblock it the inner tubing burst. Roger was in Calgary on business, and his sister was supposed to stay with Benjamin that night so that Emily could come home with me. Instead we're off to the hospital so I can sign consent forms and Emily is shunted off to my parents' house for yet another sleep-over. It was a bad case of deja-vu right down to the surgical team, the same one from the New Year's Eve debacle. This time everything went smoothly, and Benjamin was back in his room at midnight.

Of course that was then, and a whole week has passed. Guess what! Broviac #5, which was so perfectly placed a week ago, has already started slipping. It got to the point where today the surgeons came to add another suture to try to keep it from slipping out more. Written like that it sounds like nothing, but think about it. A numbing cream was put on the site, and then with a nurse, a surgical student, my mother, and me holding Benjamin down a surgeon stitched the Broviac tight to his skin while the poor kid howled, but never moved. Now we have to keep it taped down and as free of tension as possible - tell that to Benjamin!

Back to Ben's birthday. It started auspiciously when he vomited all over himself in his bath, and the feeding tube came out at the same time. In fact, the tape on his face in these pictures are from that tube. And I think these pictures show him as happy as he got that day. Before a new feeding tube could be put in, he needed transfusions to bring his counts up. And when they finally went to do it the positioning of the tube was bad so they had to take it out and do it again. He's had diarrhea so bad that his entire diaper area was flaming red and super sensitive to the point that he's back on morphine just to make the diaper changes bearable. I'm told that when the nursing staff came to the window to sing "Happy Birthday" he was just crying "no, no, no". See I wasn't even able to be there the whole day because I was in the emergency room of another hospital trying to take care of myself. Just call me Miscarriage Mic or something. I go through pregnancies the way Benjamin goes through Broviacs (this one was #5). In a way it's just as well, since the timing was crappy. When they stick, I don't do the first trimester very well. It's constant nausea, no appetite and fatigue that renders me near comatose - the perfect recipe for looking after an active toddler confined to his room on a leash of multiple IV lines. Of course, the timing of the miscarriage was crappy too. A day earlier or later would have been fine, thank you very much.

Besides the Broviac and the birthday, overall Benjamin hasn't had a great week. All the classic signs of engraftment and the Graft vs. Host (GVH) disease are happening. Which means fevers and rashes among other things. The steroids Ben is being given have turned his terrible twos into a nightmare. A more contrary child I have never seen. He even cries "no, no, no" in his sleep. Roger said today that this week has been the worst since Ben's relapse, and it's true. All the doctors and nurses are pleased to see these things happening to Ben because it means that the stem cells are taking and starting to reproduce, but we fell like at this moment we've lost our little guy. But he'll be back and we're giving you all advance notice that this time next year we'll be throwing Benjamin the most rocking party a 3-year old ever had. AT HOME!

Feeding Tube Blues

This is an experiment in new technology for me. Roger took the digital camera to Calgary, where he is on a business trip. Left cameraless and wanting to post new pictures, I plugged in the webcam which comes with the laptop in the transplant room. These pictures are the result - not the best resolution and a little blurry, but they do the trick.

At least you can see that Benjamin is happy and won't stay still for anything. And he has a feeding tube. One of the first things they did Thursday morning post-transplant was put in the tube. A very common and totally expected side effect of the conditioning is mucositis - basically cold sores all the way from your mouth to your gut and possibly further. We escaped the worst of this with his first treatment, but got it bad now. The frustrating thing is that Ben hasn't lost his appetite - it's simply too painful to swallow even his own saliva. So his meals are now Pediasure Plus four times daily, as well as 12 hours continuous at a slow rate overnight to ensure he maintains his caloric intake. We were on a morphine pump, but that was removed today. And although Ben refuses to allow anybody to suction his mouth, he is quite adept at doing it himself. The feeding tube has an added bonus as it makes it possible for Benjamin to take his oral meds, but it is not without problems. There is always the risk that Ben pulls it out or throws it up, both of which happened on Sunday. While normally it is a simple procedure to insert a feeding tube, the worse the mucositis is, the more painful it is to insert the feeding tube.

Other than that, however, Benjamin has weathered his first week post-transplant remarkably well. Friday was his lowest point, and except for some up-chucking on Sunday with the tube, he's done great. As expected Ben has required several transfusions of blood and platelets. But his energy levels are just going up and up. I don't know what they are giving him, but I want some! I even called the doctor on it yesterday. He promised us fatigue and instead we get a Tasmanian devil attached to a Christmas tree IV pole with up to 6 separate lines and a feeding tube. You control that! You can see a bit of the X-mas tree behind Ben in the 2nd picture. He hasn't been this connected since his ICU days (exactly one year ago, by the way). And every pump on the tree except the one for his feeding tube has a line running into his Broviac. Which is a story unto itself.

Faithful readers might recall the problems we had with Broviac #2, which culminated in an emergency New Year's Eve trip to the operating room. Well this one, Broviac #4, is starting down the same path of destruction. The outer lining of the tubing has once again disconnected from the casing covering the split of the two lumens. A call has already been put in for the surgeons to come in and make an assessment. Since Benjamin is still awaiting engraftment of the donor stem cells and is very open to any infections (he's even given himself E coli), much greater care must be taken with the decisions made on #4 than the brush-offs we got with #2. Last time the issue was pushed aside for 2 months until there was no choice anymore. We'll see what happens this time. Maybe I should contact the manufacturer directly and ask them what they suggest for a recurring problem with one of their products: PRODUCT RECALL!

Anyways, time to change Ben's diaper, make up my bed, and get some shut-eye. After all, Ben doesn't care a hoot how much sleep I've gotten when he's up and ready to go at 6:30 AM.

The Bubble Boy Cometh, or the Sweet Smell of Success

Benjamin reeks. He is at this very moment exuding from his every pore an odor which I can only describe as a sickly sweet mix between rotting orange peels and formaldehyde. This is a common byproduct of stem cell transplant and comes from the preservatives which were used to store the cord blood. Apparently it is worse in bone marrow transplants because more preservatives are needed. But it will dissipate in 24 hours. Yes, faithful readers, the deed is done. At 11:44 this morning the stem cells were pushed into Benjamin's blood stream (that's them in the jumbo syringe in the picture). The entire process took all of 8 minutes, and by 12:15, as Roger and I were getting Ben ready for his nap, I was already wrinkling my nose in confusion. So far so good, as Ben is doing really well.

It will take 2-3 weeks for the stem cells to take. In that time Ben will be getting regular transfusions and shots of G-CSF, which stimulates the production of neutrophils, and he is supposed to start showing signs of fatigue. That hasn't happened yet - in fact Monday night he was up until 3AM! I gave up trying to deal with him at 12:30 and went to go sleep on the leather love seat in the parent's lounge - very comfortable! During the day, we have to spend most of the time chasing Ben with his IV pole as he travels around the room. The worst was this past weekend, because not was he trailing several IV lines, but he also had a catheter inserted Friday evening. And the line from diaper to collection bag is a lot shorter than his IV lines, and a lot less forgiving. Imagine running past the end of the leash when the leash isn't around your neck but stuck up your ... you get the picture.

Other than the catheter the conditioning process went well. We arrived at the hospital on July 2nd, and Benjamin officially became a bubble boy. He was not allowed out of his room except for the radiation trips and his daily bath, carefully timed for when housekeeping comes to clean his room. Only 5 people other than staff are authorized to enter his room, and only under strict sanitary conditions. He and Emily can now bang on the window separating them (which they do with great glee). The major incident during Ben's radiation treatments involved technical difficulties with a sticky stretcher outside the Montreal General. Luckily we were able to quickly commandeer an Urgences Sante ambulance to take us back down the hill. But otherwise, I got a couple of hours a day to work on the communal jig-saw puzzles set up in the radiation waiting room. In fact I developed a reputation with the regulars for having a very good eye for matching pieces. I was disappointed on the last day because I left after the morning treatment with only about 50 pieces to go, and by the time I returned 6 hours later the puzzle I had been working on the whole time was finished. Oh well, I started a new one for them.

I guess other than the transplant, the other "big" news is my hair. Yes, it's gone. Actually it's in a zip-lock bag in the mail. Some of you might know that I've been growing it out to donate it to Locks of Love, an organization which makes wigs for disadvantaged children with permanent "bad hair days". It's the 2nd time I've done it and it takes about 2 years for me to grow it long enough, but the timing was absolutely perfect, and I love it. It might not seem like much, but my hairdresser told me that each head of hair donated can make up to 3 wigs, and if you're cutting it anyways... For anyone interested I've added the link to the others already listed.