Category: Cancer Sucks

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.

Please Pray

It’s 9:30pm on Tuesday night and Angelica just came downstairs – she had been sleeping – complaining of a sore throat and coughing.

She looked a bit flushed and so we took her temperature (because her counts are so low).

It’s at a 37.4F

Normally her temp sits right around 36.5F so this is a whole degree up from that. If she reaches 38F then we must take her into the hospital right away because she has NO infection fighting ability.

Please pray. Pray that whatever is bothering her will be gone. Pray that she will be healthy. Pray that we will be able to hold it together if she does need to go into the hospital. Pray that it’s not bacteria. Please just pray!

How Low Can You Go

Jon and Geli went in to BC Children’s Hospital today for her last dose of chemo in this intensive phase of treatment.

Let’s pause for a moment and celebrate………WOO HOO! This is an amazing thing. It’s been such a very long tough year and although we are not quite finished this phase yet….we are so SO close!

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Siah playing with the hose at my parents place!

Alrighty, now back to the matter at hand….in the normal fashion, they did blood work on Angelica and it came back…..well it came back not so good.

Her White Blood Count was at a .3
Her Hemoglobin was 79
Her Platelets were at a 44

This means that the infection fighting cells are almost non-existent. YIKES! And so at this exact moment, we are asking for prayer that Angelica would not pick up ANY bacteria and that she would remain fever free. Yesterday was the nadir from the last ARA-C dose and while we had hoped that she’d not drop any lower than she was last Friday, it looks as if she has….even if by just a point.

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Sometimes that hose shoots out faster than you are expecting

We are praying that her counts are now heading up.

We are desperately hoping to avoid a hospital stay this time around.

Geli’s appointment today was scheduled for this afternoon and as a result it was almost to late for her to get a unit of red blood before the clinic closed. Seeing as her hemoglobin was borderline, we are happy to have her not get the red because getting the red almost guarantees her a fever when her counts are this low.

So, we wait for Thursday, when her counts “should” be heading back up, and we will do another blood test then.

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So Much Fun!

Please pray that she would stay healthy and not pick up any bugs.
Please pray for her counts to come up rapidly.
Please pray for the entire family to be at peace. We are hanging in there, but just barely. Everyone is feeling the strain of this past year and we are extremely ready for some down time.

Quick Hello

I’m feeling a bit……..a bit lost these days.

I’m tired. I’ve got so much to do. I desperately need to get some of my thoughts out of my head and out into words and yet….I haven’t the time.

Jon’s just getting the first order ready to send in to the T-Shirt place. Angelica has sold 9 t-shirts and we are so SO thankful to all of you who are supporting her in this way. She is so excited to be making some money on her own.

We are looking to put up another shirt with the design as more of a logo – we’ve had a few suggestions that guys might like that one better and she also has 2/3 more options that we just need to make digital.

The biggest issue is finding the time. GAH! I hate time….really I hate the lack of time!

Angelica is doing okay. She’s managed to stay healthy so far and we are really praying that she continues until her counts come up. She goes in tomorrow for her last chemo appointment of this intense phase of treatment and then as soon as her counts come up……SHE STARTS MAINTENANCE! YAH!

She’s pretty tired and having a tiny bit of a hard time sleeping. We are wondering if she needs to be a little bit more active in the day, but when you are feeling pretty punk, it’s kind of hard to be thinking about exercise.

We are just really looking forward to her body re-adjusting and settling down and for her to be able to readjust to her “new normal”.

If you’ve sent me an e-mail and I’ve not responded or if you’ve messaged me on facebook or if I was supposed to call you back or get in touch with you or you just really wonder why I’ve not been in contact with you……please have grace for me.

I’m feeling quite pressured these days and feel so guilty that I’m not on top of EVERYTHING and yet, it’s just not possible for me to do everything that I’d like to right now.

I had a mom message me the other day and I almost broke down. Her daughter had leukemia and is done maintenance and is doing amazingly well. But, she asked how I was doing and mentioned that so often people don’t realize how long the whole treatment process is. I recognize that you reading are somewhat aware because I write about parts of it, but there is such a sense of loneliness and exhaustion and this whole “leukemia/cancer” thing is crazy intense. It’s so FREAKING LONG and there are so many times when you feel like you have no more to give and you must just carry on.

And now….I must go….Jon’s waiting on me! We’ve got to pick up passports, send in the Make a Wish Forms, Place the t-shirt orders, go grocery shopping and clean the house….it’s a busy, busy day.

Hope you are having a good one.

Happy Anniversary… sort of…

On June 16th, 2010, we received a call from our family Doctor that started the most difficult year our family has ever had to deal with. We spent that night in the Emergency Room at BC Children’s Hospital getting asked a million question and getting poked and prodded and at about 1:00am on June 17th an Oncology Resident came into our room and stated that initial blood screen results indicated that Angelica was fighting Leukemia. We were admitted to the hospital, tried to get a few hours of sleep and…

On June 17th, 2010, after a bone marrow biopsy, the diagnosis was confirmed as Acute Lymphoblastic Leukemia – B Cell (with a few other specific gene type annotations). This became Day 0 and a whirlwind of activity began that changed the course of our lives.



June 17, 2010
June 17, 2010

Tomorrow is June 17th, 2011. One year since all this began and Angelica is still in active treatment. Her counts are very low, so we have an appointment tomorrow to get some blood transfusions. It will take all day in at BC Children’s, and we would like to celebrate.

We are not looking to celebrate a year of leukemia treatment… that is just morbid. We do want to celebrate a year of life, a year of triumph and a year of community coming together. As her counts are so low, and she is not really allowed to be around groups of people, we can’t go and throw a big BBQ in the back yard, but we can celebrate in other ways. I would like to ask you to send in a comment at the bottom of this post or e-mail (to: patti@xangelle.com) and share “something” with Angelica. You may have a moment in this journey that really sticks out to you. You may have a way that this journey has impacted your life. You may just be able to say, “I am still standing with you”. But please take a moment to share something. I would like to be able to share your encouraging thoughts and comments with her all during the day tomorrow at the hospital.

Also, please have a look at the shirts that Angelica is selling (button on the right) and buy one or pass the link along to friends and family. And if you are not interested in using the paypal shopping cart, or wish to pay in cash, please just contact us and we will set it up. We will be placing our first order with the shirt printer on Monday.

Jon