Christmas Eve

Today they tell us we can go home for the day... Lyric decides he doesn't want to go. The Doctor asks him why? He says I just don't feel like it. Then he snickers and says.. this is my home. The Doctor covers her face and says oh.. no, do we have to start making things uncomfortable here?

I would have pushed us to go, but he's actually tired today and we are having visitors today as well. I'd rather him feel rested up for a busy day tomorrow.

We would like to wish everyone a wonderful Christmas Eve.. enjoying family, music and food.. loved ones and nastalgia.

We are very fortunate to have a Christmas together, I'm going to enjoy every moment.

Christmas is almost here!

Wow.. time has flown by.

Lyric has been doing so very well.. he is still on antibiotics.. and will be for another week or so until his counts come back up. Everything his blood has been making is still going towards repairing his poor little body from this infection.

They have however changed the schedule of his meds.. as of the 24th he will get them once a day for 3 hours. We've been given the choice to either stay at the hospital, go home, or stay at the Ronald McDonald house. So in the end I chose to stay at the hospital as much as Lyric wants to go home. I would have to return every day to the hospital for a 3 hours treatment.. which in real time would be about half my day with driving and getting him hooked up, getting blood tests, getting the antibiotics going.. then there is always the weather. Which is supposed to be bad this week.. freezing rain. So I don't want to take the risk. So we are going to work it out so that he gets the meds while he's sleeping. Then if the weather is good for the day I will go home and return in the evening. Makes sense right?

I've had Avery at the hospital for the last few days which has weighed on my last nerves! It's been a couple weeks already that I've lived in a small room in the hospital.. but having a super energetic 6 year old that needs to be entertained.. is tough. But now a friend has arrived.. another little girl she loves her age whose brother also has AML. So they are both happy, busy and it helps a bunch! Her parents are wonderful people. They own a chocolate shop in Paris, Ontario.

I'm tired.. but keep reminding myself that we are almost at the end. I have been by his side for almost 6 months now. Every moment of every day. It's been a tough road. But has made me a stronger woman. Mind you, this pinched nerve in my neck could use a massage!

Lyric has gotten spoiled this week at the hospital. He's held an Olympic Torch twice.. got to see the actual flame that came from Greece and will be lighting the ceremonial torch in BC, had lots of presents from Mike's Miracles.. a little boy who died from cancer and his family has started a foundation. Lots of treats...

And I have now seen two more kids this week come in with a new diagnoses of Leukemia. So I've offered my support to the families. I know it helped for me. One guy is a big wig.. and has actually offered getting me a job. Speaking of job.. I just applied at the hospital. They are hiring a Secretary for the Oncology department. Since I know so much about it and have a background in admin.. the pay is great.. it would make sense!

Photos

Santa came to visit.. Lyric of course says.. that's Santa's helper cause he's brown... Oh Lyric.

So far so good..

So we have been fever free for a few days.. which is great. we have the infection under control. However, Lyric's blood counts are not coming up so they are leaving him on the antibiotics for another week or so.. until his counts come up. Everything he is making is going towards fighting this infection.

So yes, we will be here for Christmas.. bah. We are hopefully going to get out to my Aunt Heather's on Saturday for a leave of absence for a family gathering... but we will have to wait and see how he weathers. He's been having allergic reactions to the heavy antibiotics... sweats, chills, and vomiting. sigh.

Otherwise he's great.. eating.. playing.. pretty happy most days.

Gooooodbye Fever!

We have been fever free all day! knock on wood,, knock on wood!

They now don't think it's a fungal infection.. but they have asked for additional tests on the original culture they sent away that confirmed the Strep. So for now they have him on many antibiotic's to make sure he's being covered, then they will take him off one by one until he's a-febrile..

He had a great day...mind you he had a platelet transfusion, which he gets Benedryl for now so he slept for hours!

All the white blood cells he is making are being used for his infection.. so he is still at 0.

He ate very well today.. his appetite is coming back slowly.

His spirits are not so great.. I think he's at his threshold now for tolerating all this crap. Poor little guy. However he's very excited about Christmas.

I bought a little money tree yesterday and a couple strings of lights and decorated the little tree and strung the lights around the room. He was quite pleased when he woke up. The today he made 2 Christmas balls for the tree.. I'll post a pic when I can.

Thank you all for your positive support and energy. I could not go through this without all of you.

CT Results

We got the CT results and it is confirmed.. Lyric has an infection in his lungs. And more than likely it's fungal.

So they are not taking out his Hickman as of yet, and they have changed around his meds. Again.

The infection may be hard to get rid of, but with the help of Jane, I am hoping it will be sooner than later. She has been more than helpful as usual.

They will go ahead with his chemo though.. once his counts are back up. So the nice thing is that he will be done, and we can focus on just getting him better.

We will be here for an estimated 2 weeks.

Surgery/Tests

So they decided to pull his Hickman. That will happen tomorrow. I thought they were going to wait for the results from his CT scan which is scheduled for today.. (to see if there is a fungal infection) but they said they want to make sure they cover everything right now.

The Xray was clear.. but this CT will be a little more in depth. And of course, the surgeon comes in and says we are planning to remove the Hickman for tomorrow, but if there are any emergencies.. he will be put off.. of course my comment was isn't he an emergency? He's fighting for his life. 48 hours after they take out his Hickman, they will insert a PIK line into his arm.. at that time they will do his bone marrow and lumbar puncture t get ready for chemo. Ya, kick him when he's down.. I want to get the chemo done. But man, so much at one time for his little body.

Anyways.. his fevers are now 12 hours apart. And they are not as high. Which is great.. BUT there is still something there causing the fevers. His cough is getting worse too. It's this tickle in his throat.. and he says it's hard to breathe. So they are keeping a close eye on him.

They are starting him on a very strong antifungal med.. apparently it makes them feel quite sick. That's great.. just something else to add to the mix of shit he's on.. I tried getting them to put it off until he's done the CT .. but they said no, they wanted to start it now.

My adrenal fatigue starting to kick in again.. so I will have to try and be more diligent with what I eat, drink more water and take a trip to the health store and get something.

Avery is doing well.. she spent the weekend with her friend, and had a great time.

It will be difficult to gte Christmas stuff in order.. but I will try.

Love to all. Thanks for your support.

Test Results

So I got back the results of the swabs they took to see if he had a virus and they were negative. Yay!! but, on the downside it means there is something else going on that they are concerned with. He has been breathing with difficulty, and has these coughing fits.. so they ordered another chest xray for today and a CT scan for tomorrow.

They think that it's Lyric's Hickman catheter, but first want to see the results come back from the tests. They are also going to start him on an antifungal.. which is a one month treatment. They won't be putting in a Hickman again since he only has one treatment left, but they may put in a pik line.. which is in the arm.

His spirits are not the greatest.. he's getting tired of being poked and prodded. Tired of having the fevers..

He did go 12 hours without a fever which is also great news.

He woke up this morning and said he had a great dream.. he woke up at home and all his friends were there. aww... i felt so bad for him.

Avery's Birthday / update

We had Avery's 6th birthday here at the hospital. We tried to explain to her that this year we can't really have a party for her.. but that we would make it up to her. Grampa and Grandma and Aunt Heather came. I had decorated the room with a birthday banner, streamers, balloons and her very own roses. We ordered pizza, had a strawberry vanilla cake and just hung out while she opened her gifts. She enjoyed it, she was a little upset she wasn't having a party with her friends.. but it's just not a good time. Avery made friends with Anthony, a 13 year old mentally challenged boy (in wheelchair) who doesn't say much except hi, bye, and bella (he's Italian..) and giving him high 5's.. she turned on the music and danced with him. Talked with him... she was wonderful. At that moment I realized what a sole she is.. so accepting and patient. Loves all walks of life. She tried so hard to make him laugh and smile. I think she would work well in a field like that.

As for Lyric, his fever still persists. Just when he seems to be doing better, he slips back into the red zone. They are monitoring how far between and how high his fevers are. That way they will see if the antibiotic is working.. at this point they are thinking that they may pull his hickman.. even though the cultures are coming back negative. Apparently the antibiotic can kill the bacteria, but leave it dead in the body or tubes, causing fevers still. He got his diarrhea back.. and goes through chills. He is now starting a cough, says he has a tickle in his throat. They (the doc's) think there may be something else brewing such as a fungal infection. So they may start treating him for that if the fever doesn't let up in 24 hours or so. Fungal infections take months to get rid of... sigh.. He's still not eating much.. I'm pretty much force feeding him. Little bites here and there.. just to have something in him.

I feel so bad for him... he hates being here and now we know we will be here at Christmas. If anyone is able to stop by around Christmas to see him, that may make him feel better. We will be alone here pretty much.

I still have shopping to do.. so I will have to find a way to get out and get some done. We will be trying to manage Avery for the 2 weeks as well while she's off..

Thanks Tara for coming and visiting today.. it was so wonderful to see you and get out for a bit.

Scary day...

He had a great night.. woke up and started his fever again. Right back up to 40.

All throughout the day his fever would go up.. and back down.. the Tylenol did nothing, but they still continue to give it. Even though they tell me it's hard on the liver. great.

He hadn't eaten all day.. they said they were going to put him on the TPN.. IV nutrition, but I said no.. give me the day. I'll get him to eat. And I did. It was difficult to force him to do it.. I made about 5 different foods.. he had NO desire for any of them. I said he could have anything he wanted.. and nothing tickled his fancy.

We got the results back from the initial tests they did in the Falls. He does have an infection. A streptococcus one.. and it's now in his blood. Common in AML kids.. they just don't have the membrane in the throat and mouth to battle it..and that is where it's commonly found. So it starts there then ends up in the bloodstream. Now it may be in his intestines too.. which is not good.

They started him on a new antibiotic.. he's now on 4. This new one gave him hives.. ugh. So they gave him benedryl of course. They said that they will have to give it every time when he gets the antibiotic. Sure, load him with more shit. gah.. i can't seem to wrap my head around mixing so many drugs together and how that effects the body.

So the infectious disease docs come in.. there were like 5 of them. They studied Lyric and determined that the new antibiotic was the best one.

They are sending his stool away for testing to see if he in fact has c. difficile or other bugs in it which is common.

They had an emergency echo done.. they came to the room within minutes. Apparently the infection can get into his heart and affect it. Ugh,, can it get any worse? He also had a x-ray on his chest and good news, that was clear!

He is sick, all day nauseous, cold, scared, mad, sad.. crying.. poor little guy upset that he has to wear a diaper cause he can't make it sometimes with the diarrhea. He's embarrassed.

So apparently tey may take his hickman out, it can be infected too, and treat the infection. It could take a month. Or as little as a week depending on his response to the meds. Then they would put him under again to insert a new tube to start his last round of chemo. ughhh!

I was scared out of my tree today. The docs and nurses are in our room constantly monitoring him. He's hooked up to machines to monitor his oxygen, which keeps falling, his blood pressure, and heart rate, which keeps going up. I was alone today too, which made it hard... lots to deal with. This infection CAN kill him.

This evening around 5 he perked right up, and said I want a pogo, and Annie's macaroni and cheese, marshmallows, and ice cream. HA! I ran out and bought all else but the marshmallows (eww).. he ate all of it. At this point, i didn't care what he was eating.. as long as he was.

Then a couple hours later he got a fever again.

We now need to wait 24-48 hours to see if the antibiotics work.. and if they don't they will just try another one. Sigh...

I feel so bad for him, right at the end and he gets this nasty infection. I spoke with Jane, my Naturopath and as usual she was amazing. She has him on Goldenseal, and more active bacteria.. so that should help. Goldenseal kills Strept and the bacteria will help with the negative effects of the antibiotics. So let's hope in conjunction he will get better soon and we will be home for Christmas.

Love you all and thanks for the love and support.

Fever returns

His fever has gone back up to 40. When he gets to 40, he starts to vomit. So then he can't take another ibuprofen... you would think they ive it to him before it gets to 40 but they don't. They want to see how high the temp goes back up to... sigh.

They have taken another culture from his hickman catheter to see if that is the source. They said that usually if a fever lasts this long it's the hickman. They are waiting for the results from the culture they did in the falls to see if it came back positive or not. It takes about 48 hours to see the results.

They also sent away a culture from his little winky too..

So we'll have to keep waiting..

Update on little sicky..

So he slept all day, and all through the night. They haven't been able to get his fever down at all. The tylenol isn't working. They resorted to giving him Ibuprofen. Apparently Ibuprofen compromises the platelets.. it can deplete them, as well as hinder they way they work. Having a fever also depletes the platelets..so it's not a good idea to give Ibuprofen. But they don't have a choice. So they will be monitoring him closely.

He vomited several times, all bile since he hasn't eaten. Had diarrhea. I gave him a sponge bath and noticed some extra yeast on his little winky.. so that may be a cause for infection too. All the cultures came back negative so far too.. so it could be viral as well. Although he is not coughing or has a runny nose. He keeps sweating, which means his fever is breaking a bit.

He is getting another hemoglobin transfusion shortly, his counts are low. That will also make him feel more energized. He just perked up about half an hour ago and ate half an organic toaster pastry and actually wanted to play video games! Good sign..

The little bugger had to save this till the end.. the Oncologist this morning said he's quite an exception compared to other AML kids. He's been so healthy and she said it was bound to happen.. but if it's just a yeast infection, still... that's nothing compared to the horrendous fungal infections most of them get.

Thank you all for your thoughts and healthy healing energies. We love you!

I spoke too soon..

4 a.m., Lyric is yelling my name. I slowly open my eyes.. half asleep and groggy I get up to him throwing up all over his bed and floor.. I look at him and he's flushed. I take his temperature and it's 40.3. Way too high. So I call the Oncologist on call and he says to take him to the Niagara Falls ER.. he says his fever is too high to spend the hour driving to Hamilton.

We get to the Falls ER, and as expected they are not prepared for a child with cancer at all. They know nothing about his hickman, I had to show them how to use it. They made me very nervous. After several hours, they managed to get his fever down a couple degrees.. then he started to have the shakes really bad. He couldn't stop for hours. His white cell count is at 0, he has hardly any platelets and hemoglobin.. they have now arranged for an ambulance to whizz him down to Mac. It is now around noon. He gets bundled up in the Ambulance and I jump in my car. I had to take the car because we needed our stuff and needed to get back home.

All I can say is that it is a very horrifying and upsetting feeling to watch the Ambulance speed down the highway.. lights on, siren on and your child is in it. I cried for a moment.. then centered myself again. He will be fine.

We get to Mac, and we`ve now been here for about 3 hours. They can`t get his fever down at all. It keeps creeping back to 40... scary stuff. There is either a bad infection somewhere or his lack of red blood cells and platelets have given him a fever again.. I`m leaning on the side of infection.

He has slept all day... tired and not well.

Avery`s birthday is Friday.. I am trying to get her up here so we can at least celebrate here. We can always have a party at a later time. Poor Ave...

Holidays

Can you believe the Holidays are upon us.. it only feels like yesterday when we found out Lyric had Leukemia. Time has just dissapeared. Although when I am sitting in the hospital room for days.. it seems like forever.

We are still at home!! I am amazed at Lyric's health.. especially after this last round. He has moments of being nauseaus here and there but nothing serious. Avery actually had a full fledged cold this week.. coughing, runny nose..I made her wear a mask for a couple days which she disliked. I hesitantly used Lysol wipes (nasty chemicals), and kept them apart as much as I could. I also had the help of the air purifiers which are supposed to kill the cold bug too. But I feel the natural remedies he is on are probably what helped him the most .. he's has been free and clear so far!

Avery's report card was great, the teacher had nothing but nice things to say about her.. a couple things to work on of course (like giving other kids a chance to answer questions, and printing clearly) .. but her teacher thinks she needs to take drama or acting classes as I do.. she's such a natural.

Lyric doesn't really get a report card, he does get graded.. but it's much different than the norm. He is however ahead of his class!

The next round of chemo is a strange one.. We are scheduled to start Dec 21, we stay for 2 days. Undergo a day of intense ARA C .. the neuroligically damaging chemo, and the next day is one that is administered into his leg bone through a big needle. And yes, he's awake for this.

We then go home for 4 days, and then return to hospital to to the exact same thing..

THEN WE ARE OFFICIALLY DONE!!

We will be monitored very closely after that.. and he will take a few months to recover to normal.

So we may potentially be home for Christmas! We've put up our real tree.. I just love the smell. Decorated the house.. and if we are home I want to have a dinner.