Monday, October 24, 2011

What a Night...............

Dear Family and Friends,

I would like to start by thanking everyone involved in organizing Julia's event Thursday and of course everyone who came out to support us. It was a fabulous evening filled with wonderful entertainment from Brian. It was very overwhelming and emotional to see how many people came to show their support and how we live in such a great community that really cares. To the many people involved in planning the event (who didn't even know our family), we are truly touched at all your hard work and generosity.

Now to Julia..........most of you weren't aware that Julia was discharged late Thursday afternoon and after only a few hours home and as I was scrambling to get ready for the event she spiked a fever. So as the show was going on I was on my blackberry communicating with her oncologist and my sister who was watching her. We managed to get through the night and I brought her to clinic Friday morning. No surprise..............she was readmitted to Sick Kids. We got less than 24 hours at home. She was scheduled to have a heart biopsy on Friday but earlier in the week cardiology postponed it a week to this Friday to give her some extra time to get better. Well now doctors are sharing our frustration with the constant admissions. It has been 5 weeks that we have been in and out (mostly in) of hospital. Therefore after many discussions and back and forth emails we have a plan. I got an email last night at 6pm telling me that Julia will go to the OR this afternoon for her biopsy. Although it is unlikely that all of this is related to rejection you just never know with Julia and no one is taking any more chances. She will also have a PET/CT (hopefully tomorrow or Wednesday) to look for disease or infection. The Infectious Disease team believes we may be missing an infection that is deep and that's why when she is on IV antibiotics her fever goes away and she feels better, but the minute we take her off she is unwell again. They are hoping the PET will light up in any areas of over activity and this will guide them on where to go. gets better.....on Friday while in clinic waiting for a room I started feeling really sick. I tried to hide it but the nurses and docs could see something was wrong. I was alone and started to panic so I finally spoke up and told them that I had an excruciating pain in my back/side. Julia's doc advised me to go across the street and check it out cause it may be my kidney. Of course I did not go and just popped some Advil and Robaxecet and was hoping it will all go away. Quite the opposite within hours I could not walk and it hurt to even breath. My mom took me to Women's College and we waited 5 hours in emerge just to be seen. As I continuously called Elio too check on Julia. After waiting 5 hours the doctor comes in and says it could be stones or a pinched nerve and could I come back Monday for an ultrasound and CT. I looked at him and just about bit his head off. I said listen I can't come back Monday as my daughter may be having her scans on Monday so give me some drugs to help with the pain and let me get back to my daughter. He prescribed me a muscle relaxer and pain killer which basically knocked me out all weekend. The good news is that I am feeling a little better, the bad news is I can't take the drugs because I need to be able to function in here so lets hope the pain doesn't come back. Julia's situation is really taking its toll both mentally and physically on all of us. I really want to go home with a healthy child and live some what of a "normal" life.

It will be a busy week in here as we make another attempt to figure out what is going on. I will keep you all updated as I know more. For now please keep Julia in your prayers.

Thanks for you support.


Sunday, October 16, 2011

Luck Just Not On Our Side..........

Hi Everyone,

I'll start by telling you that Julia had been feeling really well the last couple of days so the plan was made on Friday to get a day pass for Saturday and see how she did at home for the day and than discharge this morning. She came home yesterday and started off fine but as the day went on she changed. She became more tired and started getting warm. Headed straight back to the hospital and when she arrived her temp was 37.6 - not bad but not great. Well this morning at 4am Julia spiked a fever.....6 hours before her scheduled discharge. So of course no discharge for us and back on IV antibiotics - the Sick Kids cocktail. I am so unbelievably frustrated and don't know what more to do.

The bone marrow results that are reported (some still not back)show that she is producing cells but they are being destroyed somewhere (same as last time). There are some elevated T cell clones seen in the marrow but unfortunately doctors don't know how to interpret these results. So we know that this isn't normal but don't know the link between this and everything going on. As an institution (and actually in the whole medical field) they do not have a good understanding of T cell clones in Julia's situation. The MRI showed that there is no hemorrhage or mass in the brain (thank god), all good news. It did however show an abnormality that is seen in kids that have been very unwell or received chemotherapy. Given that this was Julia's first head MRI there is nothing to compare it to. So basically another piece of information we will keep in our back pocket and follow. So incredibly frustrating to go through a number of tests (which all show something) and still be no further ahead. It is not any ones fault and doctors are always working hard to put the pieces of the puzzle together it's just not that easy. For now we are stuck in here longer on antibiotics. I will know more tomorrow when the team is back and hopefully I'll have more answers or a new plan. As you all know there is never a dull moment in our lives.................

Thanks for your continued support and I will keep you all updated.


Thursday, October 13, 2011

Tough Day

Hi Everyone,

Yesterday was a crazy day. Julia had her bone marrow and LP yesterday and of course things weren't as smooth as we would have liked. Julia was NPO (no food or drink) in preparation for the OR yesterday. Once she found out she could not drink she started panicking. She said "mommy I'm not going to that room am I? Tell me the truth mommy. Don't send me to that room." She is so smart that she knows when she is NPO that normally means the OR. As she cried and trembled with fear, begging me to tell her the truth and asking me to promise her she didn't have to go to sleep I looked her straight in the eye and lied. As my 6 year old looked at me to reassure her everything was going to be ok I had to tell her she wasn't going to "the room". Talk about the worst feeling in the world to have to lie to her. She was so anxious that the anesthetist had to drug her before going to the OR. She was so stoned but still managed to cry and beg me not to leave her. I carried her in and they pushed the "sleepy medicine" as I held her in my arms I felt her little body become completely lifeless. I laid her down on the bed and could barely compose myself as I watched them mask her as I left the room. While she was in there the doctors told me that the pressures in her brain were really high. When they do an LP they check for pressure in the brain before taking the spinal fluid. The norm is below 20 and Julia's pressures were 43. Once she came out and went into recovery we were rushed to Optamology to check if they could see the pressure behind her eyes. Thankfully there was no pressure seen in her eyes. In the late afternoon doctors came with the LP results. Looks like she has Aseptic Meningitis (viral meningitis - not bacterial which is the really bad one). Now its figuring out how and why she developed this. There are multiple reasons starting from the simplest (a viral infection or drug induced) to very serious causes like an infection in the brain or PTLD. She is scheduled to have an MRI of the brain today to try and help doctors figure out what's going on. Thankfully she is feeling ok considering. The bone marrow results are not in yet and doctors are anxious to see them and see if it can give them any further answers. She will also have a CT of her chest to look for evidence of disease. This new finding doesn't really give us any answers with what is going on with her counts, kidneys, etc. it just gives us something else to deal with and worry about.....unbelievable.

I can not begin to describe how I am feeling. It feels like being repeatedly kicked in the head when your already down. Instead of moving forward and towards discharge it seems like things are getting more complicated everyday and this admission may be a long one. I am meeting with Julia's oncologist this afternoon to discuss our plan and she will have bone marrow results by then which we will discuss as well. If we're lucky the MRI results may also be back.

I will keep you all posted as I find out more but for now please pray that the MRI is good.


Tuesday, October 11, 2011

Deja Vu

Hi Everyone,

Well home didn't last long. I feel like it was yesterday that I was writing the very same post. Julia is back in hospital and things are crazy as usual. Julia went home on Wednesday night and continued to be unwell. By Sunday we had to bring her back to emerge and she was once again admitted. Her counts continue to be non existent and she remains very tired and weak. One new thing (like we need anything else), is that her kidneys are not functioning as they should be. Her kidney counts are 4x what they should be and she seems to be having some metabolic issues with her electrolytes. Looks like her body is producing too much acid. I had a long talk with her oncologist today and the doctors are completely baffled and admit they are missing something but what is it. It is not from lack of trying. They are working around the clock, consulting other doctors, dotting all their i's and crossing all their t's but are still scratching their heads. So the time has come to start searching. Julia will go into the OR under general anesthetic tomorrow for a bone marrow biopsy and a lumbar puncture (to check spinal fluid). They will look for disease, viral infections that could be suppressing the bone marrow, and a few other complicated things. This will be a brutal day as Julia does not always do well with anesthetic. These days are extremely heart breaking and emotional for me as I bring her into the OR and hand her over to the doctors as I watch them drug her to sleep as she screams and cries begging me not to let them hurt her. I give her a kiss good bye not knowing what will happen when I'm gone. Then I wait in the halls pacing and praying until they come out.........torture. After that she needs to have her CT that doctors were trying to avoid due to the excess exposure to radiation. The problem is she can't have the CT until her kidney counts come back to normal because they use contrast for the scan that is hard on the kidneys. We have involved Neuphrology (another team) to help guide us with the kidney problems. They have ordered a whole bunch of tests one which will include a special function test with nuclear medicine. And after all that she is booked to have a heart biopsy on October 21st. This poor kid has endured more visits to the OR in 6 years than we will in a lifetime. Julia also refuses to eat so we have started her on TPN (nutrition in a bag through her PICC line.....yum), as she has lost almost 2kg.

We spent yet another holiday in the hospital (Thanksgiving) but even though things are a mess right now I found myself thankful for a lot of things......Julia's strength, my other healthy kids, my friends and family, the wonderful team of doctors we have, the incredible support and kindness from all of you, and of course Julia and much more. So even in the worst of situations there are always things to be thankful for.

As you can imagine things are very busy, stressful and frustrating right now. Many of you have watched me go through this so many times before so you know I am completely emotional and physically exhausted right now and can't say much more than I have. I will update you all as I know more.

One thing I do want to mention is the benefit concert that is being held for Julia at Markham Theater on October 20th @ 7:30pm. There are so many wonderful people working so hard for this event and unfortunately with being in here I haven't been able to help much or talk to all of you about it. So I am letting you all know that the tickets are now on sale through The Markham Theater and we would love to see you all their to support Julia. Many, many thanks to all the people involved in this event. Your hard work, dedication, kindness, and generosity are very much appreciated and we are forever grateful for what you are doing for our family.


Wednesday, October 5, 2011

Update on Julia

Hi Everyone,

Today we have a plan......home. Julia has improved clinically and is responding well to the IV antibiotics. Her counts continue to be bottomed out but she has been afebrile for 3 days now. I negotiated with doctors to let us go home and continue the antibiotics at home. Julia's nurse will come in twice daily to administer the IV antibiotics at home and we will come back for clinic on Friday for follow up. She will get an antibody infusion this morning called IVIG in an attempt to boost her immune system. Crossing my fingers she does not have a reaction and we get home as planned.

This has been an extremely hard couple of days as I have watched a 4 year old little girl lose her battle with this deadly disease. Last night a beautiful 4 year old girl died (2 doors down from us), as her poor little body just couldn't fight anymore. Julia and this little girl have been in hospital together over the last year and were neighbours a lot of times. Her mother hugged me so tightly the other day in disbelief. I just broke down, there was nothing I could say to this poor mother as she watched her baby girl slipping away. She sat on her bed crying and screaming making sure her little girl knew how much she loved her. The life in here is beyond explainable. And if you've never been touched by cancer you can not even imagine what these poor kids endure and than to lose the battle after fighting for so long and so hard is heart breaking. I can not bare to see one more innocent child lose their battle. I have seen more children die in 3 years than most of you will in a lifetime. As I sit here crying for that poor mother I am overwhelmed with fear. Fear that this deadly disease can strike at any time and despite the fight these kids give its not always enough. How could life be so cruel. The mother said to me yesterday "how do I leave here without her". That comment hit me hard as I could not imagine coming in with your child and leaving without them. I realized that as much as some days I am tired of this place and just don't want to be here, without this place would mean I would be without Julia. The thought is too much to bare. So no matter how many days we spend here or how many times we keep coming back I realized that as long as I'm here so is Julia. I have spent a lot of days in the past 5 years asking God WHY? Last night I spent it in Julia's bed holding her as tight as I could thanking God for giving her the strength and asking him to always give her strength to overcome what is thrown her way. I am a complete emotional mess today.

I ask that you all say a prayer for that little girl's family as they deal with the most devastating event life can bring. I pray that God gives them the strength to go on. My thoughts and prayers are with them all.

I will keep you all posted on Julia and how her time at home is.


Saturday, October 1, 2011

Julia Back In Hospital

Hi Everyone,

I wish I had better news but I don't. Once again Julia is back in Sick Kids. Julia had not been herself the last week or so and on Thursday afternoon her home care nurse noticed that something wasn't right. She found her heart rate low and blood pressure a little high. I called her oncologist and she asked me to bring her in to be assessed. As I was in the car I was thinking great another day wasted in emerge. Boy was I wrong. Within an hour of being in emerge Julia deteriorated and became very unwell. Doctors were scrambling to figure out what was wrong and everything was pointing to her heart. An emergency echo was done, high dose antibiotics were started and we were moved to the 8th floor. Julia continued to deteriorate overnight and into yesterday. She reacted badly to one of the antibiotics and vomited with every dose infused. Our transplant team came to see me and told me that there may be some subtle changes on her echo pointing to possible rejection. They ordered a special echo be done and if they saw the same changes they would rush her into the OR for biopsy. I stood over her bed panicking and pacing all day watching her heart monitor knowing there was nothing I could do, but prayed that my baby girl would fight. It is the worst feeling in the world watching your child deteriorate fast in front of your eyes and feeling so helpless. Last night cardiology confirmed that the echo was fine and her heart is stable. It was a huge relief.

Her chest xray is also still showing 2 spots in her lungs. The thought was that it was pneumonia but after a 10 day course of antibiotics the spots are still there and her symptoms continue. Now the team is focused on the lung issues. She is feeling a little better today and docs now believe everything may be related to what their seeing in the lungs. The fact that she improves once on high dose IV antibiotics after 24 hours tells them its bacterial and responding while on IV but once she comes off she gets sick again. There is some talk about a possible biopsy of her lung to try and figure out what exactly their dealing with. Although I am hoping this will be a last resort as a biopsy of the lung is extremely dangerous. As of this afternoon the thought is that Julia may require a full 2 weeks of IV antibiotics to totally clear the infection. It is the weekend so not much really gets done in here and talks probably won't pick up again until Monday.

I feel like I am living in a never ending nightmare. Every time I turn around there is some medical crisis to deal with. One of the nurses said to be yesterday that she doesn't think they've had a family here so much and for so long (3 years). We walk onto the ward and everyone knows us like family. We really have spent way too much time in this place. Even the cleaning crew, security guards, and Starbucks staff know me by my first depressing. My life is so chaotic. I am always cancelling appointments, plans, and shuffling Anthony and Emily everywhere. Poor Anthony had no idea until being picked up at school Thursday by another mother and told he had to go stay with Nonna again. I know the saying "God only gives you what you can handle", but honestly I'm not sure how much more of this life I can handle. Not sure how many more times Julia can battle back.

For now please pray that Julia continues to improve and we can get out of here soon. The lack of privacy, the constant pumps beeping, the every 4 hour vitals, the pathetic shower, everything about being in here is driving me crazy.

I will continue to keep you all posted on Julia's progress and hope that my next post will be a better one.