Wednesday, November 23, 2011

Heartbreaking News........Off to New York for Trial

Dear Family and Friends,

It is with great sadness that I tell you that Julia has relapsed....again. On Monday doctors confirmed that the biopsy of her throat confirms that the PTLD is back. It is at a very early stage which is good. What is strange is that Julia remains EBV negative in her blood so it was a big shock to learn about the relapse. We have spent the last couple days trying to gain more information. She went into the OR for a gut and colon biopsy yesterday and today she had another PET/CT. The results for the biopsies will take a couple weeks. Today's PET/CT was very similar to the last - it uploaded in the throat although the findings in the lungs were worse than seen 4 weeks ago. We are not certain as to what this process is in the lungs - is it disease or is it infection? At this point it doesn't make much difference since we already have a positive biopsy. There have been numerous discussions taking place between us and the doctors and between the doctors here and the doctors in NY. The big question was do we go to NY? Since it is not under the circumstances that we expected to go to NY there was a go/don't go feeling. There was one strange thing from the biopsy which had doctors wondering if this was the right time. Along with the b cells (which have always been seen in the past), the pathologists also saw a number of T cells which is making everyone nervous. Unfortunately the medical world is not always sure what T cells mean when looking at cancer. Tonight Julia's oncologist confirmed that NOW is the time to go to New York. Although I think everyone is a little nervous they've decided to send us. Therefore we are leaving on Tuesday for New York and the trial (the first cell transfusion will be Wednesday). Doctors are trying to get us home tomorrow so we can spend some time as a family before going. So the plan is to try and get out of the hospital tomorrow, come back Saturday for bloodwork, and than be back Monday for the final tests prior to leaving.

I can not begin to explain how I am feeling right now. Completely overwhelmed and terrified. I only have a few days to get things organized and more importantly spend with Anthony and Emily so I can not be in touch with anyone. I will be gone for Anthony's birthday on the 11th and he will be devastated. Depending on how Julia is feeling we will try and bring the kids down to NY so we can spend Anthony's birthday together. Our lives have been a nightmare the last few years and seems we just cant catch a break. This disease is like a ticking time bomb that just keeps gaining power. I am feeling like the walls are closing in on us.

I wish I could say more but really I dont have the strength to discuss this any head is going to explode. I will update the blog from NY and hope to have nothing but good experiences to report. Thank you all for your continued support and please keep Julia in your prayers. May God give her the strength to continue fighting.



Thursday, November 17, 2011

Update On Julia

Julia was discharged on Sunday afternoon after receiving her blood transfusion and being monitored for a few days. On Monday night she spiked a fever. I organized drawing blood cultures and counts from home and sending it to the lab. It showed that despite being on the GCSF injections she still remains neutropenic (no counts). Her oncologist was so kind to bend the rules and allow us to remain home and follow from there. But by yesterday fevers persisted and it was time to come in......there was no more rule bending. So last night she was re admitted to Sick Kids and is under going further investigations. We had consults with both GI and ID today and everyone is sitting tight for last weeks biopsy results. There seems to be a very big concern or hunch that we could be looking at disease. Julia remains very weak and tired and it has been decided that its time for a feeding tube. So we will put it in and hope that she doesn't pull it out. We need this (and trust me this was a last resort), to get the calories in and help her gain some weight and feel stronger.

Saturday is Emily's birthday and I am so sad that it looks like Julia will be here. This will be 2 of 3 years Julia has been in hospital on Emily's birthday. As most of you know this has been an unbelieveablly tough ride the last 2 months and there seems to be no end in sight. I am worried, stressed, frustrated, sad, angry, and feel so displaced. The back and forth to and from the hospital, the luggage I keep packed at the side of my bed, the constant goodbyes to Anthony and Emily its becoming all too much to bare. I pray everyday that we are able to find out what is causing Julia to be so unwell and we can fix it soon.

I will keep you all updated on the situation as I can.

Thanks for all your support.


Sunday, November 13, 2011

Back At Sick Kids

Hi Everyone,

Julia is once again back at Sick Kids. In my last post I told you that she wasn't feeling well on Thursday and had spiked a fever Wednesday night after her biopsy. After speaking with her doctor it was decided that she should have cultures drawn and a CBC. So we arranged for the bloodwork to be done here at Markham Stouffville through her pediatrician. The office called with results and Julia's hemoglobin had dropped from 87 on Wednesday to only 71 (70 is transfusion). I immediately contacted her oncologist and as always she responded immediately. She agreed that this was a huge drop and gave me the option of going in to emerge or waiting till Friday morning and seeing her in clinic. I told her I was a little worried about the drop and the possibility that it could drop even further overnight. Her response "if your worried that's my cue to bring you in now, I'll call the fellow and let them know your on your way". So we packed a bag and off we went......thank god. When we got to emerge and rechecked her bloodwork her hemoglobin had dropped to 62 (down by almost 10 in 7 hrs). The panic began.......was she bleeding internally? Where was she losing this blood?). The doctor ordered blood and they transfused her immediately. The transfusion took 4 hours and I saw every minute of every hour all night. They re checked her blood as soon as the transfusion was done and her hemoglobin increased to 96. They rechecked it 2 more times that day and it was holding steady. ENT came to see her and confirmed that there was no way the procedure she had would drop her hemoglobin by that much that fast. They ordered an ultrasound of her belly and thankfully saw no blood or bleeding in her belly. What they did see was that her spleen is 2cm bigger than it was 2 weeks ago...........this could be big trouble.

Some good news...............Julia had a great day Friday and yesterday. After getting the blood transfusion she perked up and had tons of energy even ate a little. I haven't seen her feel this good in a long time. The hope was that they would let her go home yesterday but doctors did not agree with my plan. We will try and get a discharge today.

Its been a very very tough couple months as I watch Julia deteriorate with absolutely no answers. In the past she gets sick, we know why, we start treatment, and she gets better. This time its been watching her get sicker and weaker and have more issues each week with not being able to find out why. I am beyond frustrated and extremely worried about where things are headed. We can't get more than a week at home, and the worst part is that she develops new and different issues each time. I really feel like things are spinning out of control.

NY has confirmed that my cells are ready and have been frozen. They are waiting to hear from doctors here about Julia's EBV status. This week's EBV remains negative so we've bought ourselves at least another week. I told Julia's oncologist that I need her to stay negative until we figure out what is going on or at least she's feeling better and stronger. Can't imagine running into all these problems in NY. Wonder what a blood transfusion would cost there.....scary. We haven't even gotten there yet and you would not believe the stack of bills I've received for my cell donation....its absolutely crazy and makes me very thankful to live in Canada and have health care.

I am an emotional, nervous wreck right now and apologize for not responding to all your messages or being very brief in my responses. I need a little time to sort things out and most importantly need to have Julia home and feeling well.

I will keep you all posted on how she's doing and please keep her in your prayers.


Thursday, November 10, 2011

Biopsy Done.....Now We Wait for Results......

Hi Everyone,

Julia had her biopsy yesterday and all went well. She is in a lot of pain but recovering comfortably at home. It was a very emotional day yesterday as we waited and watched Julia cry about having to go into the OR. Her surgery was delayed by an hour which made things even worse for all of us. She cried and begged us not to send her into the OR. She kept asking for the "white, sleepy medicine". As she was doing her pre op assessment her temp registered 37.6 (border line fever for her). The nurse looked at us and said the anaesthetist may not bring her into the OR with a temp. She was not feeling well and I could see something wasn't right. The anaesthetist came to talk to us and I explained that this was the reason we were doing the biopsy (too find out why my kid was always sick and has fevers). The interesting thing is that Julia finished her oral antibiotics on Monday and as always 48 hrs later here came the fever. Everyone agreed that the benefits of going forward out weighed the risks. So Elio geared up in OR wear and walked her into the OR. We both walked her to the big OR doors and than I could not go any further. I watched as Elio carried her into the OR as she reached her arm out to me calling for me in tears. My heart broke as I totally lost it in front of the OR doors. I have been through this so many times but yesterday realized that this never ever gets easier and I can't take one more visit to the OR. The OR staff reassures you that they will take good care of her but really to hand your child over to strangers and not know what will happen in there is absolute torture and in my eyes we've done it enough.....NO MORE. As we were sitting in the surgical waiting room a family right beside us was pulled aside and told that something went really wrong in the OR with there daughter and doctors were working frantically to stabilize their child. The mother just about passed out and was shaking in disbelief. This is the first time ever in all my times waiting in the surgical room that I have seen this happen. I started to panic and realized that even in the simplest procedures with the best doctors anything could go wrong. Needless to say that it was the longest wait ever after seeing what this other family was going through. Finally after an hour and a half the doctor came out. He had actually taken pictures of the surgery (and boy were they hard to see), and showed us what he saw. The good news is that once he went in he did not see a mass (which he was expecting to see based on the CT), he did see an area on the side of the throat that looked abnormal so he took some samples and sent it to pathology. He also took some samples of other areas just to be sure. All in all he felt like it was good news that there was no obvious mass. Now we sit and wait for pathology results, which will take approx. 2 weeks.....torture. In the meantime Julia remains unwell and no one knows why. As I mentioned she wasn't feeling that well before the procedure so after was even worse. She was tired and complaining of stomach pain. Her oncologist decided to draw cultures and give her a dose of IV antibiotics to protect her for 24 hours in case she spiked a fever. And boy does she know Julia.....last night she spiked a fever...again. She remains unwell this morning and still has a fever so I will contact her docs and see what to do next. It was decided that she will go back on oral antibiotics until we have the pathology results. So once again she has to take more antibiotics (which she hates). We are also meeting with Infectious Disease next week to hopefully get some guidance from them. All these antibiotics can't be good for her. The other piece of news we got yesterday is that Julia finally has some of her B cells back (about 20%), therefore her oncologist will contact Texas about growing her own cells and shipping them to us for the future. Now that she has B cells the possibility of the EBV returning is higher therefore we tested it yesterday and await the results of that. If she's positive she will be ready to go to NY. I hope she remains negative long enough to figure out what's going on and hopefully get her better.

I realize that going to NY is where we need to go but you have no idea how lucky we are to have an oncologist like we do. This lady is the most incredible person I have ever met. She's not only brilliant but caring, compassionate, and kind, and she goes well beyond her call of duty and is always there for us. I don't know if I could do this and remain sane without her. She is the closet thing to God I have right now in my life. I trust her completely and value her expertise. She really is a saint. I will miss her while we're gone and wish we could bring her to NY with us. She has a calming about her and always makes me feel comfortable. I don't know what we will get in NY. The good thing about her is I know she will remain in contact and be checking up on Julia while we are there cause that's just who she is and what she does for her patients....incredible person.

As we wait for the EBV and pathology results I will be a little insane these next 2 weeks so bare with me. I know I have fallen off the radar with most of you but please know I think of you all and appreciate all your support.

I will keep you all posted on Julia's progress and the results once they are in.


Thursday, November 3, 2011

Quick Update

Hi Everyone,

Julia was at the hospital yesterday and it was a long intense day. It started with what I thought was just going to be a an ENT(ears, nose, throat) consult but to my surprise it was much more. Two doctors entered the room and proceeded to tell me that the CT shows something in the throat and its the same spot that uploaded on PET. I said you must be mistaken it was the PET that lite but CT showed nothing. The doctor left and re looked at that scan (at my request) and came back and confirmed that the scan shows that the right side of the throat is bigger and there's a ball like shape. He wasn't sure why the radiologist did not comment on this in the report. The next thing I knew I was being told Julia needed to have a biopsy to rule out disease. Her ENT doc was leaving that night and did not feel the surgery could wait so had already made arrangement for another surgeon to do it. In he came to introduce himself and have me sign all the consent forms. Therefore Julia is scheduled to go to the OR (AGAIN) on Wednesday morning. They will go in and look at the spot and take a sample to send to pathology. The pathology reports normally take up to 2 weeks to come needless to say the next 2 weeks will be agonizing. Then we headed to Oncology clinic and Julia has lost another 2 lbs. She is dropping weight so fast and has become so frail and weak. We are all concerned about the weight lose and may have no choice but to put in a feeding tube (Julia will absolutely hate this). The speculation of what this could be is driving me it a relapse of her PTLD? is it a new full blown Lymphoma? is it ebv negative PTLD? or is it nothing?

Julia's potassium was really high yesterday so we had to repeat it today and instead of driving all the way downtown we decided we would check it locally. To my surprise Markham Stouffville does not draw blood from a PICC line. So I had to go to Markham Stouffville and draw the blood myself from her line (I've never done this before) as the lab techs stood and watched me.

Things are very crazy right now as my days are consumed with taking care of Julia, trying to get food in her and my new job title....nurse!!! Absolutely crazy that 6 years ago if Anthony fell and scrapped his knee I would freak out and today I spend my days flushing Julia's PICC line, hooking up hydration, holding her down as her nurse gives her the injection (brutal), and now drawing blood and putting it in tubes......crazy life.

I will keep you all posted on how she does next week.


Wednesday, November 2, 2011

New look

Hi Everyone,

I administer the blogsite for Nadia, and I just wanted to welcome you to a new look!

I have removed the messages gadget because it was being spammed so frequently, it wasn't even useful anymore. Please leave all messages in the COMMENTS section of each post. Comments are always appreciated. They let the family know that you are thinking about them, and Nadia can pass on your love and well wishes to Julia.

There are a few new additions to the site. You can join the Let's Help Julia Group on Facebook, the link is on the left side and now you can sign up for Nadia's updates through email.  You can also use your Google account to follow this blog.

As always, thanks so much for your support in Julia's fight.

Take care,


Tuesday, November 1, 2011

Home Sweet Home.....

Hi Everyone,

I am happy to report that Julia was discharged Sunday afternoon from Sick Kids and more importantly has remained home! She is still not quite herself but we are still trying to work that out. She is on overnight hydration and receiving daily injections (which her home care nurse is giving), to try and boost her counts. She will be back at the hospital tomorrow for an ENT consult, bloodwork, and clinic. We will see tomorrow's results if the injections are working. She may also require a blood transfusion tomorrow as her hemoglobin remains very low.

Julia's heart biopsy came back showing minor rejection (this is expected in every transplant patient). The good news is that its nothing serious that requires intervention. Her PET/CT showed some small lymphnodes in her lungs that also lite in the PET scan but doctors believe this may be from the pneumonia she had a few weeks ago. We have moved her to oral antibiotics for a 2 week course and will re scan her after this to see if there is any improvement. The puzzling piece is that her PET scan lite in her throat although CT did not pick anything up in that area. So once again doctors don't know what to do with this piece of information. Therefore we are seeing ENT tomorrow to see if then can shed any light on the situation. Especially because Julia is still not eating and is losing weight quite quickly. Hopefully they will have some ideas for the team. She will also have some special Rheumatology bloodwork drawn tomorrow to help guide doctors. Everyone is working hard to try and figure out what is making Julia feel so unwell. At this point they are thinking out side the box and running whatever tests they can to help them. Her bone marrow biopsy also showed that she is iron deficient and this is why her red blood cells are so low. Her last EBV remains negative which means she is not ready to go to NY. Sloan Kettering is ready for her and now we wait until her EBV becomes positive and off we go. At this point we test it weekly and wait for a positive. It may have been a blessing in disguise because I can't imagine being in NY while shes been so unwell. I just hope they figure out what's going on before we need to go to trial.

Although we are home things are far from normal. I feel like we went from being a prisoner in the hospital to a prisoner in our home. Julia is not well enough or strong enough to go out (nor can she be around anyone due to germs), home care is coming in daily, I have to hook her up to hydration every night, and it takes me 2 hours to convince her to eat. Even after the 2 hours I can only manage a bit or two of toast. At this point my days are consumed taking care of Julia and trying my hardest to help her feel stronger.

I apologize for once again being very distant from all of you but this latest hurdle has really taken its toll both physically and emotionally. I appreciate all the positive thoughts and encouragement but I'm finding it very hard to remain positive and optimistic at this point. I can not even begin to explain the fear I am feeling as I watch Julia deteriorate in front of my eyes. And cant help but worry that if we don't figure this out soon or Julia does not start to improve we could be headed for trouble. Part of me is also angry............angry at the constant battles that are thrown her way.....its just not fair. She has missed so much in her short life and instead of moving ahead and getting back some sort of normal life for her we continue to take steps back each year. It is already November and Julia has had 3 days of grade 1......another year passing her by.

I will continue to keep you all updated and hope and pray that in my next post I will be able to tell you all things are back to "normal" and Julia is back to herself. Thank you for your continued support.