I'm A Terrible Blogger

I've been really bad at blogging lately. Part of this is due to the fact that I am just so busy during the days now. I don't seem to get too many breaks like I used to during the day, mostly because the older non-napping children will no longer be good and go watch a movie at naptime and LEAVE ME ALONE for an hour's peace. Oh no. They are "bored" with that. They don't waaaaannnnt to (said with an extended whine). So I feel that I must perform my professional duties and find things for them to do. Either that or appear too busy (which actually means being busy) to entertain them. Sigh. And because of the better weather, we've been outside a lot too, so I'm not near a computer. And then evening hits, and all I feel like doing is collapsing, and my brain is too tired to function.
So the other reason is that I am long-winded, as you know form my posts. None of them are particularly short. So I'll start writing a post, then get interrupted halfway through, and by the time I have a chance to get back to it, my muse is gone and I don't feel like writing that subject anymore. I just don't have enough time!
But sorry.
I'm sure all you nice people that read me (all what, 5 of you? LOL!) have been wondering what is going on with M, my niece. So here is an update.
My sis and BIL got the results of M's biopsy, and the news wasn't good. So here's what I've pieced together from various sources (N, my dad, and google). The main tumor is on her brain stem, which we already knew. It is inoperable, which we knew. It is definitely cancer. Ther are a couple of other smaller tumors in her brain. The outlook isn't good. My dad told me that they were told "a year to live". I didn't ask my sis N if that was true, because really, I couldn't ask her to rehash that, and also we are choosing to believe that miracles do happen and what is the point of listening to doctors' timelines? It's not as if you're going to cross off the days on a calendar.
I know from googling, that the prognosis for brain tumors of this type isn't good. The percentages of survival are extremely low. But here's my thought: Some people had to make up those statistics. That means some people had to have survived it. Otherwise, the percentage would be zero, wouldn't it? So why can't M be one of those in the percentage of survival? Hope is the only thing that keeps us going.
So on the medical side, she is having six weeks of radiation treatment, everyday, except weekends. That is to hopefully shrink the tumors and extend her life (I believe anyway). Chemo is not an option, as it doesn't work on the brain. This is both good and bad news. Good because it would be terrible to have to watch your child go through that, the medication is so toxic. Bad because it eliminates a treatment option and another pathway to a hopeful recovery.
On the non-medical side, my sis and BIL have contacted the homeopath I probably mentioned earlier. He is world-renowned in the homeopathic community, and has had great success with treating cancers and other terminal illnesses. He wrote a book that N read and told me that in it he claims to have a 70% success rate with curing the type of cancer that M has! And that was ten years ago. So hopefully the rate is better now, that he will have learned more since then. And he works in conjunction with modern medicine, so they don't have to choose one or the other. We are very hopeful that this will have a positive effect. I can't fathom the other option. It's just...too....wrong.
M is doing well. She hasn't had too many ill effects from the radiation yet, and you wouldn't know that she was a gravely ill little girl. This weekend M, N and I are going to see Glee in Concert! I am so excited to see it, and also to watch M enjoy it. She loves the music!

A Small Update On My Niece

There hasn't been much in the way of news lately about M. A lot of the days has been waiting, waiting, and more waiting. Nothing, I'm sure in comparison to what N and D are going through, but just sitting here helpless and waiting for a scrap of news is hard. I know that there isn't anything anyone can do, other than offer to help in any way, or to pray and hope, but it still doesn't make you feel any less useless knowing that. I comfort myself by Googling stuff, hoping for a scrap of info that would help; daydreaming that I would find a small tidbit of information that would cause everyone including the doctors to go, "Oh! Of course!! We must try that immediately!"
I have found some information about cancer patients drinking breast milk. Some study in Sweden, I think, found that by putting breast milk onto a rat's tumor, it shrunk it. Other studies have found that patients with bladder cancer received breast milk and peed out dead cancer cells. Who knows if they are drinking the milk, or if the milk was being applied to the tumor directly. There's the thing: there isn't any proof that drinking breast milk will help. But it can't harm, right? I mean, it's not a nasty chemical or even from another animal; it's HUMAN milk! Something many of us were raised on.
So anyway, we still don't know 100% that it is in fact cancer, but it's not looking too good. Maybe I am grasping at straws like I always do, but I would be willing to do anything to save that little girl. I would go on that breast milk inducing drug (Domperidone?) to get myself lactating again, if I thought it would give an ounce of help or hope. My other sister, S, is still breastfeeding my niece, A, but I don't know if she has enough anymore. A is now pretty much almost finished with that. I know she could get it started again with some perseverance and pumping, but......well, it's all speculation. I've yet to mention it to N or D, simply because we have no diagnosis yet.
On the weekend, M as released to go home for a few days. The boys and I went over to their place on Sunday to hang out. M was happy and playing, although somewhat tired, probably due to lack of good sleep in the past few days and also the steroids they had her on.
On Monday, they took M back to Sick Kids to admit her for her biopsy scheduled for yesterday. Yesterday was a huge waiting day. Nobody knew what time the biopsy was happening. And we all had to play telephone tag : my mom, S, my dad and I. I'm sure my brother was in there somewhere too. He is lucky though, as he lives right in Toronto and can go over to the hospital basically anytime and be there very quickly. Can't believe I'm saying someone is lucky to live in T.O., because, blech, but in this case it is.
M finally had her biopsy around 3 pm I think, but didn't get out of recovery until about 8. I still haven't talked directly to N since Sunday, mainly because I don't want to keep bugging her with phone calls, and also because when S and I were trying to call this morning, we discovered we had the wrong numbers.
M spent the night in Constant Care, where they could monitor her carefully. Her heart rate was low after the surgery, and she is on morphine too, which requires constant monitoring of their oxygen levels. She was responsive though, a good thing, and she is having visitors today. They did a CT scan of her head this morning, to make sure that there was no hemorrhaging from the biopsy.
Unfortunately, it looks like they will be waiting until probably Friday before they get the results back. She posted a note on Facebook earlier, and mentioned that right now feels "a bit like the calm before the storm." It is terribly nerve-wracking. Even I dream of M every night, and wake often wondering what the outcome of all this will be.
I must stay positive and hopeful.

I Should Never Complain Of Boredom Again

So yesterday, as I was trying to post to my blog about the horrendous ordeal that is going on, I was told over and over again by the blogger website that it was unavailable. When I finally got onto my blogger dashboard, I could see that my post from Thurs was missing. It wasn't a terribly exciting post, just me complaining of boredom mostly, but it seems to be back now so you can read it if you need a sedative (ha ha).
Anyhow, I will not complain of boredom again. Because you know the old adage; be careful what you wish for.... This was not the kind of excitement I was longing for! Not at all!
Last night the family and I went down to Sick Kids to visit my sis, BIL and M. With not being able to leave before 5 or just after, and having to stop and buy some Wendy's for dinner, and also with the constant traffic that encompasses the 400 series of highways, we didn't get there until almost 7. That left us with just an hour to visit.
But that was ok, because M and the rest were wiped out. M hadn't had enough sleep the night before for such a small girl, and then had been sedated during the afternoon for her MRI, so she was getting pretty tired.
She was, however, just as spunky and cute as ever. Looking at her, you'd never know there was something evil and ugly growing inside her sweet little skull. I constantly ask myself, as I'm sure so many have done before me, why? Why her? Why this??
WHY?
WHY?
WHY?
We've had a little bit more news since then. I'll copy and paste what my sis wrote on Facebook this morning.
"The oncologist came in with the results last night and they were a bit confusing. They said they were unusual. The one mass at the base of her brain has a cyst in the middle but is surrounded by tumor, but it has a clear defined edge which is supposed to be a good sign (benign?) They also found another mass on her cerebellum which is another tumor. They have decided to do a biopsy early next week, so we may possibly go home today for a couple days and then come back. The biopsy will involve removing skull to take it, and then they will decide on treatment, they won't remove the brain stem one and probably not the other one either, just chemo and/or radiation (I wasn't clear on that part)."
So that's all we know. It sounds a little more hopeful than what we were originally told...although the thought of my poor little M going through chemo and/or radiation is frightening at the least. Plus the whole removing of her skull business...
My sis and family are home now. They were discharged this morning with a prescription for a steroid for M, and were told to come back on Monday so they'd be ready for the biopsy on Tues.
That's it for now. Please keep sending those good vibes and prayers.

The Worst Day Of Our Lives So Far

My mind is in a whirlwind. Consequently, my body is feeling strangely detached. I am going through the motions, almost like I've been on some kind of heavy painkiller for the day. I'm tired of crying, and my head hurts from it. Today, at 6:00 a.m., I received a phone call from my sister. Everyone who has a telephone knows that phone calls at odd hours can never be good. Unless you're expecting good news, like, "The baby is finally here!" You hear that phone ring, and your stomach lurches up into your esophagus. Your heart starts to pound at three times its normal rate. And I received the worst news via telephone that I've ever had in my life. My four-year-old niece, M, is in Sick Kids Hospital. She has a mass in her brain. Oh. God. I had been talking to my sister N the previous day, and she was telling me about these strange symptoms that M has, that they've recently noticed. Her face was drooping on one side, and she had been talking out of one side of her mouth, almost like a stroke victim. Not only that, but she seemed weak on the left side of her body, unable to squeeze your hand firmly or balance on her left leg. My sis and BIL took her to the family doctor, who diagnosed Bell's Palsy. However, the symptoms didn't all fit. Bell's Palsy ONLY affects the face, and M was having trouble with the entire left side of her body. But the doctor, being stubborn, brushed off the other symptoms because they weren't that pronounced and didn't fit her diagnosis. Heaven forbid a doctor should be wrong! M was referred to a pediatrician, but around here, those are few and far between. You only see a pediatrician if you have a problem that needs monitoring and appointments are hard to get. My sis and BIL didn't get an appointment for M until the middle of June. So last night my BIL took M to the emerg at Sick Kids. They did a CT scan, and that's when they found the mass in her brain. My sis left my nephew T with my mom and my dad took her down. My brother A was actually with my BIL giving him support. As of yet, here's what I know. She has had a CT scan. There is a mass that appears to be on the brain stem. The neurologist said he was fairly confident it was cancerous, and that given the location, inoperable. The oncologist apparently talked to my sis and BIL for quite a while and my BIL gave my dad the impression that he seemed more hopeful than the neurologist. It's not 100% sure that it is malignant, but that's not ruled out yet. She will shortly be going for an MRI to determine more, and we won't have those results until this evening. I am sick to my stomach with this news. I can't eat. I can't think. I can only imagine what my sister is going through. When R was just three, we had him in Sick Kids. He had been crying with pain in his stomach for a day and a half. We had him at the hospital, and appendicitis was ruled out, and he was given an enema for constipation. Well, I knew my little boy, and he was never constipated, so I knew that wasn't the problem. However, they sent him home and said he'd be fine in a while. He wasn't. He was crying in pain, waking up from a dead sleep crying. He had no fever, no vomitting, it wasn't a virus. So I took him back to the ER and demanded more tests. I knew there was something wrong with him. After they gave him an x-ray and ultrasound, they saw a mass in his abdomen. The doctors at our hospital had never seen anything like it, they actually had to call Sick Kids to ask about it. At that point, he was taken by ambulance in the middle of the night to Sick Kids. So I know a little of what my sis is going through. I know that heart-stopping, gut-clenching fear. That switch in your brain that suddenly turns your emotions off and commands you to move on, because this really isn't happening to you. That night I had to go home. DH went with R to Sick Kids, but we had an 8-month-old waiting for us at home that was still breast-feeding. I had to go home and go to bed not knowing what was happening and what would become of my precious little boy. My DH had it worse. He had to explain, over again to the doctors, the technicians, whoever, what was happening. He had to keep calm a scared and in pain little boy. He had to hold him down while they inserted tubes and needles and a naso-gastric tube that made him puke. And he had to worry alone. R was taken to surgery the next day. The fantastic staff at Sick Kids removed a mass that had probably been growing there since he was a baby. It was benign. Fairly harmless, and something that just happens. The pain was because it was finally big enough to be putting pressure somewhere. He spent a week in the hospital, because that kind of surgery has to be monitored afterwards very carefully. They even showed us pictures of the operation the staff had taken with a digital camera. His guts were splayed out, on top of his stomach, outside of his body while they worked. It was gross, horrifying and fascinating all at the same time. Only for a micro-second during the whole ordeal did I let my mind entertain the thought of the C-word. It was too awful to think about. But for that micro-second, I know what I felt. And to think that N is going through that right now is heart-wrenching. She is hearing that word, over and over and over again. It's hard to imagine the world without M. I don't know how my sis and BIL will get through that, if it happens. And I'm not being negative here, or at least trying not to be, but sometimes I think we have to prepare our brains for the worst case scenario. I googled "brain tumor" a LOT this morning. I googled many variations. I learned that there are many different kinds of brain tumors. I also learned, when I typed in the location "brain stem" as well as "tumor" and "cancer", that the prognosis isn't good. Very low survival rate, very low cure rate. Basically, treatment is only to prolong the person's life, not to save it. I'm not a religious person. I have no faith in God, Jesus, or otherwise. I have some belief that we are all part of the same entity, the same energy, that we are all connected somehow. I also believe that positive thoughts can help, which is what praying can be for some people. At times like this, since I was brought up a church-goer, my first thought is to turn to prayer. But I don't believe in praying in the traditional sense, it's just a gut reflex. I will however keep the belief that we will all get through this together. I must believe that this isn't as bad as it initially seems to be. So I am asking you all, however you deal with these sorts of tragedies, to please keep my niece and family in your thoughts. If you pray, please pray. Both of my sisters do still have faith in God, so they will appreciate it. If you believe in sending "good vibes", please do. I do believe that positive thoughts and energy will help, however much we can get.