Month: June 2011

Happy Birthday, Xandra!

It’s your day today, sweet girl.

Teenager

You are officially 13 years old today. I find it hard to believe that the years manage to fly by so fast and yet….I remember the day your were born…..I remember being told to go to the hospital by my Dr and then being told to go home because they were crazy busy…..so I went home to sleep for a couple of hours and then……then you were here!

You were such a cute little pixie, with such white blonde hair. I had no idea who you were or what you’d grow up to be but I was so excited to get the opportunity to know you and love you.

And love you, I do!

You are so very wonderful! You are such an amazing daughter. You are a loyal friend. You love so intensely. You feel so passionately. You are such an incredible person.

This has been such a tough year for all of us and you ave not walked away from this year without having been touched by cancer and it’s side effects. There are so many listed side effects of the cancer treatment, but you don’t see a lot written about the effects experienced by the family. In your intensely passionate way, you have felt so many of those effects in such a deep way. We’ve made it through a whole entire year.

Your entire 12th year was consumed with cancer and it’s treatment…..and yet….you were such a light in a dark time. It’s not always been easy but we did it.

Grade 7 Grad

Grade 7 Grad Dress – made by Nana C.

You have been a HUGE help to me through out this last year. You have helped out with the boys and with the housework and with meals…..you have just helped out so much! I am so thankful for your loving, kind, generous, giving spirit.

I believe that you’re thirteenth year is going to be the best one yet.

You’re headed into High School and I’m so excited for you. Just keep being yourself. You are so unique and as long as you stay true to yourself, and just keep being the amazingly friendly person that you are, you’ll do okay!

I’m so proud of you, my sweet Xandra.

So Pretty

Happy Birthday, my love!

Love,
Your Momma

Tuesday Morning Update

Well, we are still here. Angelica’s counts have been coming up VERY slowly. The good folks at BC Children’s want to make sure that when they send Angelica home, she won’t end up getting sick and having to come right back… They want her immune system to be strong enough.

Its hard though, because Angelica is not sick. She is completely healthy. The concern is not about her current health, but her immune system strength. It feels so frustrating to be sitting in the BC Children’s Hotel and just hanging out, knowing that Patti could really use a lot of help at home, and not being able to go home and help.

Alexandra turns 13 in two days and has a big party scheduled for tomorrow. We should all be at home today and helping to plan the party, but instead we are waiting to hear from the doctors to find out if they are going to “risk” sending her home.

So please pray that we get to go home, that Patti doesn’t stress too much about the party, and that Alexandra’s day turns out fantastic tomorrow.

Jon

Friday Night Update From BCCH

Its Friday night here at BCCH and I thought I would update everyone on how things are going here.


Playing Settlers of Catan. We've each won one game.


Angelica’s cultures remained negative through the 48 hour mark. This is really good, because it means that we don’t have to stay here for another 14 days. Her temperature has remained normal for almost 48 hours, and so by tomorrow morning, that hurdle to leaving here will have passed.

On the negative side, Gelica’s WBC (white blood count) remains extremely low, and that needs to come way up before we can go home. Finally here CRP (C Reactive Protein), which indicates inflammation in the body is slightly elevated from yesterday, and that needs to trend down (This is an odd indicator, because any inflammation in the body will raise the CRP including bacterial infection, viral infection, sore gums, zits… A really high CRP is definitely a bad infection, but slightly elevated could be anything, so they just need to see that its heading down and not up.)


Walking helps to raise the White Blood Count


At this point, we are healthy and feeling fine, but can’t go home till the WBC comes up and the portion of that that indicates the immune system fighting cells needs to be above a certain level (right now the level is “sample not enough to even bother testing”).

This is the part that really bothers me. It seems that when we come in here, it doesn’t seem to carry on business-as-usual at home. Something has gone wrong at home each time we’ve been in here it seems. Now Patti is dealing with illness and kids that can’t come in and visit and everything while we are here, and I’m not able to help her, because if I find someone to come in here and be with Angelica, I can’t go home and pick up whatever Judah has and bring it back here and risk a setback with Angelica. (well I haven’t been able to… we have a plan for tomorrow that includes me decontaminating in a hospital shower before I come back to Gelica’s room)

We are tired. We function better when we are together. Please pray for a really good WBC and a lower CRP.

Thanks, Jon

Not So Happy Birthday

It’s Judah’s First Birthday today.

Happy Birthday, My Little Man! It’s hard to believe that you’re one year old already.

Sick Birthday

…..this morning

It sucks being sick on your birthday. We have a Doctor’s Appointment at 11:45am just to check things out before the weekend. It sucks to take a turn for the worse over the weekend and to have to go to a walk-in clinic or the ER. I’d rather just take him in to be safe now.

Talk about fever central over here…..Judah managed to get up over 40F last night in the middle of the night and I actually had my mom pick up some tylenol at midnight because the advil was not doing what it was supposed to.

There was a lot of late night/early morning rocking and walking and cool cloths…..many prayers and very little sleep.

Geli is doing well and we are still just waiting on the 48 hour cultures to see if anything grows.

She Needs…..

I know that a fever is not that big of a deal….well, most of the time a fever is not that big of a deal. And really, it’s not the fever that’s got me so upset….it’s the timing of it all.

It seems like every time something goes wrong….a few more things all jump on top of us, and we are left under the mountain of crap trying to not be squished. Frankly, I’m tired of it all. I just want to have things go really, REALLY good for a long time. Is that seriously too much to ask?

The fever is not that big of a deal, but it means that I cannot go in to see Jon or Angelica and because I cannot go in to see them, the other kids cannot get in to see them. It’s possible that I could drive us all in and I could hang out in the car for a couple of hours with Judah while they visit, but that really doesn’t sound all that fun, does it? So not looking like it’s going to happen like that.

Jon and Geli are doing well, but they are BORED. She feels fine and yet…they must just hang around.

She seems to be doing amazing. There are a few things that need to happen in order for her to be discharged.

– She needs to have negative blood cultures over 48 hours (that’s up tomorrow at 1pm)
– She needs to be fever free for 48 hours (that’s up in the wee hours of Saturday morning)
– She needs to actually have a neutrophil count (that won’t happen until her WBC is over .5 and today she was at a .3)
– She needs to have one blood test trending downward instead of upward….it was at a 25 today and needs to hit lower numbers.

Basically we are looking at the earliest of Saturday morning before she would be discharged. I’m hoping and praying with everything in me that they do get to come home then.

It was a tough day today and yet I supposed it was a good one, in spite of it all. I have really low expectations on what constitutes a good day, ya’ll! Ummmm there was no puking. Very little fighting. Everyone was sleeping by 8pm….and um…ya….everyone got fed. So ya…..it went okay, I guess!

Well, I’m headed off to bed myself….two night with very little sleep are….well….ya….that…..

Night!

ps. Could ya pray for Judah? He’s still feverish and I’m not sure how the night is going to go and I could really use the sleep and he could really use the health……m’kay??? Thanks so much!

Like a Bad Dream

You will NEVER believe what I am about to tell you.

I can hardly believe it.

I put the kids to bed and was in bed and sleeping just after 10pm. I was so tired because we’d been up most of the night before.

All the kids went to bed happy and healthy. Judah woke up at 1am screaming. This is normal. This is how he wakes up. Frustrating, but oh well…..I went into his room to pick him up and he felt like a hot coal.

Can you believe it? Judah has a fever. I was in shock. How the crap does this happen? Why is this happening? I just don’t understand.

I mean, I understand the how and why of a fever, but I really don’t get the timing.

He clocked in at 37.7F and over the night just continued to rise.

He and I were awake from 1 until after 4 am. Right around 4am, Xani came down to my room to tell me that she’d been awake since 3:30am because she had a nightmare.

It was pretty bad. I prayed with her, talked with her and asked her to try to get back to sleep. She went up stairs and I didn’t hear back from her again.

Judah finally fell asleep on my chest and I just used my pillows to prop myself up so that he would stay there and sleep.

He woke up at 6am and Xani came downstairs just before 7am to let me know that she’d not been able to get back to sleep. She was too scared that she’d go back to sleep and “finish” the dream.

This morning Judah’s temperature hit a 39.7F and I decided that it was time for some Advil. I don’t typically like to medicate my kids but this temp was higher than I’m totally comfortable with.

I’m a little perplexed about what’s going on. He isn’t throwing up and he doesn’t have a cough. There is no runny nose! He’s peeing and not crying hysterically. He’s nursing. He’s even eaten a tiny bit of breakfast. He does have the feverish, hot looking eyes and it definitely not his usual chipper self.

He just scored a 37.5F after a dose of Advil…..so its responding to the meds which is a good thing.

I’m tired and upset and really, REALLY frustrated about this. This is absolutely ridiculous. We had planned to go in and see Geli and Jon as a family today. The kids were pretty excited to be going in to see them as they were pretty upset that they had to go into the hospital in the first place. To wake up and hear the news that we were not going in….well, there were a few tears.

I know we will make it through this but it’s still tough. Mostly, I’m angry. Angry that this is happening. It’s crap!

Geli and Jon had a good night last night. She felt pretty good after getting the blood transfusion and didn’t get to sleep as early as I would have liked her to but I’m just happy she was feeling a bit better.

Her counts are all up this morning…

for those who care:

White Blood Count is .3
Hemoglobin is 94
Platelets are 66

So everything is up, even if artificially, which is good. Her temps which were up last night have been hanging around 37.1F which is normal. So we are just waiting to for her counts to come up and for her cultures to come back negative.

I’m hoping that Judah will actually sleep today and then I will hopefully lay down for a nap as well.

I’ll update as soon as I hear any news.

Winding Down for the Evening

Jon and Geli are settled in their room and getting ready to wind down for the evening. There was talk of a movie and possibly some snacks and a midnight run of antibiotics.

She’s feeling and acting a lot better after receiving two bags of red blood cells. She’s not feeling 100% but definitely better than earlier today. We are going to head in to the hospital tomorrow and hang with them a bit. Probably have lunch with them……or maybe dinner….or both? Who knows?

We just spoke with Jon and Geli on Skype and now I’ve kicked Xandra and Jeremy up to bed. I’ve got to go and “encourage them” to actually shut the lights out and go to sleep and then I’m headed to bed myself. It was a LOOOOOOONG night last night and solo parenting is not easy and I’m not sure how long I’ll be at it. So I gotta sleep when I can….and unfortunately, I don’t do daytime naps as easy as I’d like.

Fortunately, my parents are AMAZING, and they’ve kept Siah overnight. They had him last night (which was a blessing) and they are keeping him again tonight. He still wakes up in the middle of the night and climbs into our bed. It’s not that big of a deal, but typically him and Judah tag team each other and only one of them is up at a time……..which means that if they are both here…..I don’t get hardly any sleep. The worst thing….when he sleeps at my mom’s house….Siah stays in his own bed. What is up with that? Oh well, I just keep telling myself that this is not a forever thing. One day I’ll wish for cuddles….I will try to enjoy and appreciate every one I can get right now.

Thanks for all your prayer and support. We really appreciate it.

Excuse the stupid sound that I make with my mouth. Judah was doing that and I was trying to capture it on video cause he was doing it ALL DAY! But when I turned my iPhone on so that he could see himself in the camera he got so excited and stopped doing it. But his little happiness and laughter is so contagious…….It’s too good to keep to myself. Sometimes I wish I could bottle it up and give it away. The world would be a better place……

May your evening be peaceful and full of rest.

Magic Numbers

We got the results back from a few of Geli’s blood tests.

Her White Blood Count was at a .2
Her Hemoglobin was at a 77
Her Platelets were are a 35

This means that everything is down a bit from yesterday. This is not good news. Geli will get platelets and red blood.

Her temperature continued to hover around 37.8F and they started the platelets and while the platelets were running, her temperature spiked up to a 38.3F and then in another half an hour it made it all the way up to 38.6F. They have given her some Tylenol to bring the fever down and to make her feel a bit more comfortable.

Not Feeling Great

chillin’ in the clinic

The platelets have finished running and they have started her on a dose of antibiotics.

After the antibiotics is finished running then she will get some red blood.

They are scheduled to be in a room up on 3B on the Oncology Ward and we are happy about that. It really sucks to be on a ward where you don’t know anyone and where they don’t know the typical protocol for oncology kids. I mean, it sucks to be in the hospital at all but at least having the staff that you know and being in familiar surroundings is a definite bonus.

There is another test that they did on her blood that can indicate whether an infection might be brewing and it didn’t seem to indicate that she had a raging infection. It’s well within the “normal range” for that test but until the blood is cultured, we won’t know for sure if anything is growing (bacteria) or if this is a neutropenic fever or if it’s a virus.

And so we wait some more.

I HATE waiting.

I know that this phase is almost over and that her counts are not expected to be this low again, but it sucks. It sucks that Angelica is not feeling 100%. It sucks that we are split up, as a family. There is just a lot to this situation that sucks.

I had a bit of a moment this morning, where I just wanted to throw a temperature tantrum. I wanted to scream and kick my feet and fall of the floor and yell, “This isn’t fair! Why did my daughter have to get cancer? Why did she get sick and not someone else? Why is our family going through this?”

I wouldn’t wish this on anyone else.

I know that life is not fair. I don’t even expect it to be. I just hate that this is happening to us.

Down This Road

We talked with our nurse at the clinic around 10am and after talking through what Geli looks like, is feeling like and acting like – the decision was made to go into the clinic, run a CBC (Complete Blood Count) and a few other blood tests.

Based on the results of those tests we should know a bit more about what we are dealing with.

It could be that the elevated temperature, dizziness, the pressure in her chest, the tiredness…..they could all be symptoms of low red blood or……they could also be an infection.

Jon and Geli are at the hospital right now and she’s had her blood drawn so at this point we are just waiting for the results of her blood draws to come back.

I HATE waiting. Unless her red blood cells are amazing, she’ll probably get red blood today which combined with her almost non-existent White Blood Count could mean a fever and admission.

I’m trying to resign myself that they are there for sure until the weekend. And that sucks!

Overnight Update

We took Angelica’s temp every two hours last night and it hovered between 37.4F and 37.8F.

It’s up but it hasn’t crossed the 38F critical marker. At about 4am, we called into the hospital because we really don’t want to play around with this. We’d rather error on the side of caution and take her in early and catch an infection in the early stage as opposed to waiting it out and having it be a full blown problem.

She’s tired from having an interrupted sleep, and so she’s upstairs sleeping right now.

We will take her next temperature reading around 9:30-10am and will call into the clinic then to talk to our nurse.

Until then, we wait and pray.