Julia Update

Hi Everyone,

Julia was at the hospital yesterday for what was suppose to be only clinic and blood work, but unfortunately it turned into an 11 hour day. Julia's doctor was concerned that Julia had blood in her stomach/bowels. Julia has been having occasional blood in her stool, and complaining of stomach pain. One of her blood tests yesterday were quite elevated which made the doctor suspicious that there was something going on in her gut. Therefore she ordered an ultrasound to be sure. The good news is that overall the ultrasound was better then expected. There was some bowel wall thickening, but this is common with kids on chemo. The bad news is that doctors are still baffled at what's going on. Like I've been told many many times in the past by different doctors, Julia is a mystery. She tends to show signs that something really bad is going on but then passes all the tests. And believe me we have had every test imaginable.

It was very funny yesterday as I brought Anthony with us (since he had been asking me forever to bring him), and he was so curious and scared at the same time about what was going on. When Julia had her ultrasound she climbed up on the bed, lifted her top, and watched a movie like nothing was going on. Anthony on the other hand had a look of complete fear, and was asking all kinds of questions about what was going on. He was even scared about the gel the technician put on Julia's belly. It really showed me how different they really are. Overall, it was good for Anthony to be there and understand what Julia goes through on a weekly basis. They got to play in the playroom, and do crafts with the volunteers. He got to meet all of Julia's friends she has made, and see that it's not all bad when we are at the hospital.

Overall, Julia is doing quite well. So well, that I made the request not to go to clinic next week and have Julia's nurse draw her blood from home. She will return the week later for chemo. The doctor agreed that we could try this out, so I pray that this doesn't bit me in the but. We are all happy to get a week break from the hospital.

Julia will get her last cycle of chemo on September 11th, heart echo's on September 11th and October 22nd, her heart biopsy on October 16th, and heart transplant clinic and kidney testing on October 22nd. Once we have finished all these tests I hope and pray that this will be it, and we can have a quiet winter. If all is well we will try and organize Julia's make a wish trip to Disney for sometime early next year, because God knows she deserves it.

I would like to ask everyone to say a prayer for a very special little girl and her family that we met in the hospital who has Leukemia. She is very sick, and is battling a very serious infection right now. Our thoughts and prayers go out to this incredible little girl and her parents.

thanks
Nadia

Update from Nadia

Dear Friends and Family,

Julia had her CT scan on Friday despite the big mistake I made. A routine for us when going to the hospital is that Julia drinks her milk in the car on the way to the hospital. So since I was at the hospital on Thursday and did this on the way down, on Friday we got in the car and as always - I gave her milk. As soon as she said she was done I realized I had just made the biggest mistake ever. She was NPO (no food or drink), for her CT scan since she had to be sedated. We got to the hospital and they wouldn't take her. I was devastated. I have never forgotten in 3.5 years that she's been having sedated procedures. Things are really getting to me and I am starting to lose my mind. There's just too much to remember; meds, appointments, chemo, transplant procedures, and so on. After begging the anesthesiologist he agreed to take her if we waited the 6 hours in which she would be clear from food or drink, so we did. Let me tell you it was a long day.

At around 6:00 that night Dr. Punnett called my cell phone with results. Overall she was pleased with the results. The lymph nodes in her chest, abdomen, and axilla have improved. Although they are still there they have gotten smaller in size, which is a good thing. The scan was good enough to go ahead with chemo this week. Therefore yesterday Julia received her 5th cycle of chemo, and she did fantastic. Her counts were surprisingly good, and she even managed to push through a cold on her own for the very first time. Doctors were so happy to see her body fight through this cold without support. If all is well Julia will have her last round of chemo the 1st week of September and then her post chemo CT scan around one month later.

Overall she is doing well and we are beginning to see the light at the end of the tunnel with only 1 more round of chemo remaining. It's been a long and sometimes challenging road and although we only have 1 more round of chemo it's not over yet. Dr. Punnett explained that 6 months following chemo is the most crucial time. This is when most children will relapse. So although I will be glad to finish chemo I will be even happier 6 months from now. But as we've learned in the hospital we need to take these things one day at a time, and right now we are very grateful for how much Julia has accomplished.

Julia will be back at the hospital Tuesday for counts and clinic. If all is well, I actually plan to ask for a 1 week break from the hospital. I don't know if I will get it but I will keep my fingers crossed and just maybe we can have a week without hospital visits.

I want to take this opportunity to apologize to my dearest friends and family for being so distant and unavailable. I don't really know why (since Julia is well), but I am going through a very hard time right now. There's days I just want to be alone and not talk to anyone. I hope you all understand. I think when things are crazy you just do what you have to without thinking, and when there's down time is when it all hits you. I promise I will be in touch when I feel better.

Thanks again,

Sincerely,
Nadia

Julia Update

Hello everyone,

I do not have much time but I wanted to give everyone a short update on Julia. She was at the hospital on Tuesday for clinic and blood work, and it was a pretty uneventful day for a change. Her counts were crazy and we had to make adjustments to her injections, but otherwise she is doing well. She looks good, feels good, and of course is always causing trouble.

Julia will be back at the hospital next week for Oncology clinic, Heart Transplant clinic, blood work, and on Friday for her CT scan. Like I mentioned before if all is well she will begin her 5th cycle of chemo on the 18th.

I will update you all at the end of next week.

Thanks for all your support.

Nadia