Month: June 2010

Well, yesterday was an interesting and busy day, and it could be considered another good day.

First thing in the morning, we got news that Geli would be moving from the 3 Floor Oncology Ward down to the 2nd Floor Oncology Ward. We were told that we’d probably be moving around noon. Then someone came down and said that they’d be back in 10-15 minutes to come and move us. So we rushed around and packed up everything and waited….and waited…..and waited…..and waited………and then finally…..just before noon, someone showed up to transport Geli down a floor. This is what we consider “hospital time” you get to “hurry up…………and wait!” Fun Times!

We did get moved down stairs and are all set up in her new room. It’s nice and big and although not really big enough to fit Geli’s hospital bed and 2 cots comfortably….even with the 3 beds and various other pieces of furniture and medical equipment….it’s WAY bigger than her previous room, AND….we are all together. That is very nice…..except for when one of us can’t sleep and someone else just happens to be snoring……Oh the life of roommates, eh?

Geli’s Doctor and the Nurse Coordinator in charge of her case stopped by yesterday and talked about how well Geli is responding to the treatment. They even mentioned the possibility of Geli going home earlier than originally anticipated but after we all talked about co-ordinating the birth of the baby and collecting the cord blood and when Geli needed to be around for her treatments….they decided to stick with the original plan and have her outta here on the Friday or Saturday.

We are going to be having a meeting with Geli’s Dr. and the Nurse Coordinator and Xandra and Jeremy today at 1pm. Xani and Jeremy are finding all of this difficult and I think the biggest problem is that they don’t know enough information. Xandra is having a hard time sleeping and eating and Jeremy had a melt down last night on the way home. I’m hoping that after this meeting today that they will both feel a bit more comfortable. I think that Jon is going to take the two kids out for a few hours and do something special with them after our meeting and I hope that helps both of them to calm down a bit. We just all need to hold it together for a few more days and then we’ll all be re-united back home and working on a “new normal”.

We did end up having a few visitors yesterday which was so nice….it helps to break up the day a bit. One thing that we’d like to mention and also ask for prayer about……some of Angelica’s counts are very low and have/can compromise her immune system. If you are feeling sick or have been around people who are sick or are sick, we are asking that you wait to visit until you are feeling better. It’s important that Geli not get sick as she doesn’t currently have the fighting power to combat illness. But, this is something that we’d love prayer for that she’d remain healthy and that her counts would come up and that her body would do what it’s supposed to to be able to fight off infection and sickness. Thanks so much!

And then Nana and Papa came and brought dinner and Xani, Jeremy and Siah. We ate dinner out on the patio. Thanks Suseh and Catherine……the Spaghetti Sauce was delicious.

Angelica was quite tired yesterday and was really looking forward to getting to bed early, but it didn’t work out quite like we had hoped. Sometimes you just have to work around the hospital schedules and staff and finally we were all tucked in bed, with the lights out and all the evening vitals taken by 10pm. We had a good night, even if it was interrupted a bit, and woke up this morning after 8am.

Geli’s platelets were low and because of the Intra-muscular injections that she’s receiving today they wanted to bring her platelets up a bit so she got a bag of platelets given to her…..

She is a little nervous to get two shots (one in each thigh, but at the same time) and so if you could be praying for her. I think that not knowing if it’s going to hurt or what exactly to expect is actually WAY WORSE than what will happen when she gets the actual shots, but sometimes the unknown sucks! So that is another thing to be praying about.

I feel like a broken record saying that we appreciate you all and your support, care, love and prayers but I don’t know how else to say it and it’s so true…..Geli has mentioned it more than once….I think it all the time….and others have mentioned it too. Knowing that we’re not alone, that we have this huge group surrounding us makes all of this a bit easier. Thanks! It seems so inadequate, but we mean it from the bottom of our hearts.

We’ve been moved to a new room where they can fit in both parents. Amenities also include a rooftop view of mossy gravel, private bathroom, DVD Player, Flatscreen TV, full closet, and… a whiteboard for personal messages and notes. Oh, and there’s a really nice rocking Lay-Z-Boy recliner.

I’ve been awake since 5am when Geli woke to use the toilet.

She went to bed last night around 8:30-9:00pm and at 6:30 this morning is still asleep. She only woke twice last night and every time was able to get straight back to sleep. I’m so thankful that she’s able to get some good rest. As her momma, I worry about things like that…..you know, getting enough rest and not being too worn out…..Sometimes its the little things that kinda stick with us.

Yesterday was a good day and a hard day.

So much of life is that dichotomy of good and bad, joy and pain, peace and fear, strength and weakness and yet…..we continue on!

Some….some very tiny small sliver of our current reality hit Geli yesterday and combined with everything else overwhelmed her. She was in pain from her surgery. The “realness” of being in the hospital and being sick hit her and made for a bit of an emotional day. I still don’t think that the huge-ness of this all has really hit home – for her or for us.

I know that I’m still processing through the shock of all of this in my way and I believe that Jon and Geli are doing the same. And so are our other kids and our extended family. It’s a day by day thing and just as we learned with Chris and his journey back to a new life – a lot of it comes day by day and you have the strength needed for the day. It’s much easier to focus on what’s happening now than to try to plan and arrange and control everything else. It’s so beyond our control anyway……..

As Jon mentioned in the previous post, we did have a big meeting yesterday with Angelica’s Team and as far and meetings regarding your child and cancer go…..I’d say it was a pretty good one.

We are still at the beginning of this journey and we have a long way to go, but it is good to hear that the prognosis for this kind of cancer is so good.

The Doctor who is in charge of Geli’s case walked us through the different meds that she’d be on over the next 28 days and went through the most common side effects. Over all, while it doesn’t sound that great, it also doesn’t sound that bad….

This is one thing that I’d love specific prayer in regards to….That Angelica would physically be strong through this time and that the “expected” side effects would not affect her negatively.

Some of the most common side effects are things like nausea and constipation and there are other’s but I’m sitting in her room typing this post in the dark and can’t specifically remember each one…..to say that we were overloaded with info yesterday would be an understatement. Fortunately, we have amazing references, notes taken and given to us, a team ready at our call and a whole staff that is willing to go above and beyond to answer any questions we might have.

I do feel an amazing peace about this situation and yesterday was a much better emotional day for me although I do still feel a bit like my “bell’s been rung” or my “boat’s been rocked”. I’ve not been knocked out or drowned, just shaken up some. And….when the emotion hits, I cry….and then I carry on…..because, this is life. This is our life and we will get through this.

I asked the Dr yesterday how long he figured Geli’d been sick for and he guestimated a month or two and in hindsite, we can see how that time line would match up with certain symptoms that she might have had, but also ones that are completely normal for a 13 year old girl….things like fatigue and bone pain and headaches…..

There is nothing we could have done to caught this earlier. There is nothing that we did to cause this. It just “is what it is” and we go from here. Inside her body, the cancer cells double and so that explains how she could seem fine or okay on the Wednesday that she left for camp and then to come home on Friday so sick…..when the cells start to multiply from 10 million to 20 million….well, that’s a much more significant jump as opposed to 1 to 2 and 2 to 4 and 4 to 8…….

They figure that with the start of the chemo…she will start to feel better and we should notice an improvement before this next week is up. I’m looking forward to that. It’s been hard seeing her hurting and just laying in bed. She did finally eat dinner last night and that was probably her most significant meal since our dinner on Wednesday night was interrupted by “that” phone call from our family Dr.

I’m looking forward to seeing what this new day brings. She is enjoying the visitor’s that pop by. I’ll just be honest and say that shorter visits are better than long ones….She likes to see people, but to have to entertain is hard……But she’d love to have you stop by and say hello, maybe play a quick game of cards or let her know what’s going on in your life…..normal things.

She asked her Dr about the possibility of getting to her Grade 7 Graduation Event which is happening next Thursday. They’ve not 100% okay’d that, but they have talked about setting that as a goal and possibly having her go to that on a 4 hour pass. She’d have to come back to the hospital that night and finish up some stuff on Friday…possibly getting to go home on Saturday.

So, we have our first goal……get to the Grade 7 Grad…….

While it doesn’t seem so important to us, in the grand scheme of things – it’s important to her and so therefor…..it’s important. That could also be something else specifically prayed for…that she’d be able to go, that she’d be healthy enough and that her blood counts would be good enough to have to go.

I’d love to see miracles in all of this. I’m expecting to see her do way better than the Dr’s predict what is normal. Thank you for praying. Thank you for your notes of encouragement. Thank you for loving us. I woke up this morning and checked my blackberry and had a ton of e-mails of love and support and I just cried……knowing, hearing, reading about how much we are loved and cared for and supported through this time is HUGE! Thank you! THANK YOU! We appreciate you so much!

ps. to see more pics you can click on this link or click on the photo’s tab in the menu bar at the top of the page.

We just had a meeting with Geli’s doctors and ALL the support staff, all crammed into her room. The diagnosis is that she has Leukemia ALL Type B. Based on the tests from yesterday, she does not have any Leukemia cells in her spinal fluid, which is really good. She will have a whole series of medications that will treat this exact condition and will have to be in hospital for a week.

The statistics are that 98% of kids that have this condition that get this treatment are cancer free within 28 days. The treatment then continues for two more years (although it reduces down to a couple pills that she takes once a week).

As far as this bad news goes, this is as good as it gets.

There are side effects and it will change a few things about life. Angelica will loose her hair (but she does get a custom-designed wig – i’m trying to get her to go for multi-coloured spikes). She will have to come into the hospital for a couple of days a week for most of the summer. She will have to start high school missing a few days from school every 10 days or so and work with a tutor here to keep up. But by Christmas she should be able to return to normal life.

Thanks for your prayers and comments (she reads them all).

jon