It's a Mad, Mad, Mad, Mad World

Regular readers of the blog will remember my friend, the highly pregnant fellow inmate with the marital difficulties. Well she delivered a healthy child in the middle of a December snowstorm, and this morning lost another. Her little girl, just three weeks older than Benjamin, died suddenly this morning of cardiac arrest, a rare but long term side effect of the chemo. That's the thing about chemo: if the cancer doesn't get you, the chemo just might. And she had been doing so well recently; after months of disappointments and setbacks, the chemo was working and getting rid of her tumors.

Luckily, or unluckily as you would have it, we were in clinic today for Benjamin's last spinal tap and bone marrow biopsy (to officially declare remission), and then for an echo cardiogram (heart ultrasound). I was advised within a half hour of the passing that the family was still up in ICU so I abandoned Benjamin to the social worker and ran up to the ICU to offer what condolences and support I could. We held each other and cried, and then she was on the phone making arrangements while I ran back downstairs to rescue the poor social worker from Benjamin. This woman, this bereaved mother is an absolute rock, an amazing pillar of strength, and we know that she'll power herself and her family through this just because there is no other choice. But I don't even know what to write any more. I'm so sick and tired about writing about children dying. I'm sick and tired of having to break the news to other families who have children in the same boat. I'm sick and tired of wondering who's next. It's not fair, and it will never ever be fair, and I'm sick and tired of that too.

Needless to say it was an unsettling day, but back in Benjamin's world all his procedures went without a hitch, and we will find out the results in two days. In the meantime we will continue with weekly visits for maintenance on the Broviac until it comes out (hopefully within the next couple of weeks). The scary thing, especially in light of what happened this morning, is the echo - not because of the procedure itself, but because of what it represents. Benjamin was given enough drugs in a high enough dosage that his heart will be monitored on a regular basis for the rest of his life. Now I know that the little girl's family has a history of heart problems which probably put her in a higher risk category for heart failure as a side effect. But until now that particular side effect was an asterisk, one in a million, it will never happen to Benjamin kind of thing. Now we know that it can happen, and happen so suddenly and unexpectedly that even the doctors and nurses are shocked and in disbelief. So while we are physically free from 8D, the ties that bind continue to hold us fast, ensuring that we will never truly be free, even when we're in remission.

On a personal note, I got a job (and maybe two)! I'll be doing the bookkeeping for a home-based company 5 minutes from us a few days a month. As well, I offered my accounting expertise to a parent in the ward who has his own law firm, and it looks like he's taking me up on it. I'm excited, not for the paycheck, but for the sense of normalcy I hope it will bring, that things are falling back into place after being out of whack for so long. We'll see how that works!

FREEDOM!!

THANK YOU DR. MITCHELL!!!

So Sunday morning I'm pushing Emily around Costco in a shopping cart full of industrial sized diapers and detergent, when my cell phone rings. It's Roger at the hospital telling me to drop everything; we've been discharged! AACK! Not enough warning! I pay, dump everything at home, grab a bunch of empty bags, transfer Ben's car seat into my car, bring Emily to the in laws and rush to the hospital - all at lunch time. Luckily being discharged also means having to empty our shelf in the parents' fridge. So this is it - exactly six months and 2 days after Benjamin was diagnosed and chemo was started (186 days!), he's going home a healthy boy. The only thing left now is to check his bone marrow and spinal fluid one last time, and if his counts are high enough, remove the Broviac (that's all scheduled for Jan. 22nd). The only meds he is still on is an antibiotic which he will take 3 days a week for the next two months. And apart from that it will simply be monthly CBC blood tests for the first year to monitor his counts, and then annually.

The on-duty nurses threw a little farewell party for Benjamin, with a few parting gifts (a medical toy set, a teddy and a quilt) and plenty of hugs, while Roger made at least four trips to the car laden with Benjamin's "accumulated wealth". Right at the beginning I made a promise to myself that Benjamin would walk out of here. So, much to the joy of us and the nurses, and bundled up in snow suit, scarf and hat, Benjamin toddled down the hall from his room to the nurse's station and elevators to receive more hugs before being guided out the door.

I was emotionally overwhelmed. In my mind I had for some reason picked January 15th as our "check-out" date, and was mentally and physically preparing for that. But to be "kicked out" on a Sunday, when you haven't said your farewells and thanks to various people who only work weekdays, or nights or who are coming back on duty! The suddenness of it all made it feel a bit like I was expelled from school or fired and escorted by security to the door so I wouldn't steal office supplies. I know it is hard to believe, but even though it was difficult to live in 8D, it came to feel like home, with the nurses and other families becoming our extended family. Leaving this all behind to (hopefully) never come back as a patient really feels like a graduation. There is such joy at knowing that a chapter of our lives is finally and permanently behind us, and that we can now look to the future once again. This finality also brings sadness thinking about the people left behind, both staff and other families, who have helped and supported us. I've often joked that when we leave I'll come back looking for a job, but now it doesn't feel like a joke anymore. One thing's for sure - when the kids are finally settled in school I'm going to start volunteering one day at the hospital. It seems the very least I can do to pay back what they have done for us.

Even though our time living at the hospital is over, our journey in the world of leukemia is not. I will continue to blog not just our progress, but my ramblings and musings, for all who still wish to follow them. This blog has been an incredible outlet for me these last six months and you, the readers, have been my therapists, supportive and non-judgemental, allowing me to vent and rant when needed. I feel that there is still much to say and many more pages to fill, and now that we're home hopefully I'll find the time to do this on a more regular basis. In the meantime, WE'RE HOME! Please feel free to call.

Chaos: Part 2 and Another Passing

OK, so where was I? At the end of the previous post Benjamin was being drugged with Gravol to prevent him from standing up, thus preserving his two precious IV lines in his feet. Thankfully (and right in the middle of my New Year's Day Concert from Vienna) surgery came to get consent to insert a new Broviac early the next day. So less than 48 hours after the first surgery, Benjamin was back under the knife. Again this was not without complications. It turns out that while inserting the new Broviac, they accidentally punctured an artery. A longer observation time in the recovery ward and a few extra X-rays ensured that there was no internal bleeding. With that Benjamin and his new Broviac (this time on the left side of his body) were given the green light, and the IVs in his feet were removed. Within hours, although decidedly shaky and unsteady, he was back up on his feet.

The one side effect of all these days of surgery which I had never even considered, was the return of Benjamin's dread of nurses. Over the last six months our little guy has become quite the favorite with the nurses because he so patiently goes along with all they ask of him. He opens his mouth eagerly for his medications, he holds his arm out for the blood pressure cuff and tries to take his own temperature. He laughs when his dressings are being changed, and says "uh-oh" and points to the call button when his pump starts beeping. But for a couple of days after these procedures, until he realized that the 8D nurses weren't out to get him, he screamed bloody murder any time any of them got close. Luckily that phase is now behind us again, but some kids are like that all the time (we know - we hear them). I don't know how the nurses do it.

Now while all of our drama is unfolding, there is more drama on the floor. I think I've mentioned the child who returned to the ward after only three weeks of remission. She passed away last Friday (Jan. 4th) after fighting valiantly until the bitter end. It was not a surprise, and her extended family was holding vigil in the days prior, just waiting. This was another case of ugly, ugly tumors. Essentially, the tumors in her lungs just grew and grew until ... well, you know. I spoke briefly with her mother late one night near the end, and she told me "She's fighting for her life, but every breath she takes breaks my heart". That brought me back six months to the day when we watched Benjamin struggle to breathe until they decided to intubate him. But at least we had a way out - one that kept our child with us. This family had no choice but to watch their little girl fade away.

The visitation was this past Monday, with the funeral mass the next day. Roger and I got to the funeral home early and had paid our respects and were on the way back to the hospital within 45 minutes. Later on in the evening, the line snaked back and forth at least four times, with upwards of 300 people waiting over an hour to offer their condolences. And the next day it was standing room only at the church. A proper and fitting send-off for a child who fought her illness long and hard before succumbing. May her family one day find the same peace she now has.

Chaos Reigns Supreme

I had a wonderful introspective look back on 2007: The Year That Was planned as my next blog post, but fate decided to intervene not once but in several separate ways. I will get to that entry eventually, but right now there is much updating to be done.


Unfortunately the Internet security settings at the hospital have been tightened once again, so I am no longer able to blog from there (talk about writer's block - literally!). That means that blogging will have to be squeezed into my already hectic time at home, but I will continue to do my best.


Christmas was very enjoyable and relaxed in 8D. This is the first holiday season where we weren't the ones rushing from place to place, and it was nice to have family come to us instead of vice-versa. Of course, there was a fair amount of driving to and fro with Emily, but other than that it was quite fun. Both children got spoiled with gifts, and everybody had a blast. Leucan hosted a brunch for the 8D families on Christmas day, and two days later a caterer treated the floor to a gourmet lunch buffet. On the 28th, the Fassinas had their traditional Christmas fondue and gift exchange, and the Skira turkey lunch and gift exchange was on the 30th. And although we did have to give the Charlow turkey dinner a miss this year, the left-overs delivered to us were delicious.


Of course we can't expect everything to go smoothly, and so Benjamin decided to throw us a curve ball - or at least his Broviac (the central line) did. On December 29th, after almost 6 months of use (the last two months of which it was securely taped to Benjamin in a futile attempt to prolong it's life), one of the lines on the Broviac started leaking fluids through hairline cracks. The offending line was immediately clamped with large rubber tipped surgical clamps - a temporary fix, especially since we had to tape the clamp to Benjamin's chest to prevent it from hanging down between his knees. They finally decided to try to either fix or replace the Broviac on New Year's Eve, so with less than 9 hours til the new year Benjamin was in the operating room.


Before I go into what happened next, I just want to explain the Broviac a little more. It is a central line or catheter which is threaded under the skin and into an artery (ideally under the clavicle, but otherwise in the neck). It is not a needle, but rather a length of flexible thin plastic tubing, and to insert it (or repair it) you require a length of wire to be threaded through this tubing to give temporary rigidity. Once in place the wire is removed from the tubing, and the insertion scar is stitched closed. Now, Benjamin's Broviac was hell bent on ruining as many New Year's Eves party as possible. The wire was inserted into the existing tubing and got caught on something within the tubing. This caused the tubing to separate completely from the rest of the Broviac, and be pushed further down the artery towards the heart, with the wire still stuck in the tubing. Pulling back got nowhere as swelling was preventing any backwards movement. So a team from cardiology had to be assembled to insert a tube into Benjamin's femoral vein (in his groin), which would then run up through his heart and out the other side so that a teeny tiny lasso could catch this delinquent piece of tubing and pull it out through his groin. Just assembling the team took a good couple of hours as the on-call cardiologist was not qualified to do this procedure, and there seemed to be some problem finding one who was willing to sacrifice his evening.


Benjamin was transported from the 10th to the 3rd floor (where the special angioplasty rooms are), and more than 4 hours after he went into OR the tubing and the wire were removed - not by the cardiologist however. The plan was for the surgeon to pull out the wire from the top and for the cardiologist to lasso the tubing from below. My theory is that in all that waiting for the necessary staff to be assembled, the swelling around the wire and tubing subsided. Because the wire and tubing were well stuck together, when the surgeon finally pulled on the wire to allow the cardiologist to do his thing, he pulled out the tubing too! Roger and I knew that they had removed the piece when we heard roars of laughter from the OR and shouts of "Good job!" By 11:00 Benjamin was finally back in his room, and I was able to dash off to my parents' house in time for a quick midnight toast before collapsing.

But after all of this Benjamin now had no more central line and needed the 2 IV lines which had been put in his feet. And that meant that until a new central line was put in, we needed to keep him off his feet to save those lines. Luckily New Year's Day, he was in no shape to even try to stand until late evening, and then Gravol was all that was needed to keep him down and put him to sleep.

We will continue this story in another post, but now we have to go to the visitation for a patient who passed away on Friday night. That's another post too.