Category: Gelica

As It Is……

I typed this earlier today and then didn’t have time to proof it….so it may be scrambly or not make sense in parts, but that is how things are going these days and if I try to take the time to work on this….then I may just give up and not post it….and so here it is….here I am…..there is where I’m at…just as it is….

These are some tough days that we are going through right now.

Angelica’s counts have been so low over the past week or so and it makes for some very stressful times. It feels very vulnerable and like she is unprotected. Because the “enemy” are unable to be seen with the naked eye…it makes this fight, that much more difficult. We don’t know where they are and so it makes protecting Angelica almost impossible.

Any open wound, no matter how large or tiny is an open source for infection and at this point, a tiny paper cut could send her into the hospital……

It’s not that the paper cut could send her into the hospital, but that the cut is an open wound and if she comes in contact with a bacteria and it gains entrance into her body…..she has no ability to fight off that infection.

The health that you or I take for granted……the cuts, and scrapes…the bacteria that we come into contact with and never think twice about,…..it all poses a very serious risk for her.

And right now especially, it’s tough….because she is supposed to be going to New York in 12 days. That’s less than a course of antibiotics (14 days) and throw in the 24-48 hours that it would take to culture the particular strain of bacteria or virus and you are looking at possible 16+ days in the hospital……none of this do we want on a good day…..much less when her trip is in 12 days.

Every time she mentions, not feeling well or that she has an upset tummy or a headache, or she feels hot or cold…..every time she coughs or feels like she might barf……we reach for the thermometer to take her temperature because when her counts are this low, a fever is often the only indicator that something might be brewing in her system.

I have been feeling so worn down as of late. I feel like I am reaching the absolute end of my rope. There are things that are just piling on top of everything else and making the end of this stage of the journey that much tougher.

I’m physically tired. I’ve mentioned this before but it’s true. I can keep putting one foot in front of the other because I HAVE TO, but that doesn’t mean that those feet don’t feel like they have been dipped into cement.

I’m emotionally tired. I’ve spent a good portion of this past week just on the edge of crying and every little “bump” has sent me over the edge and set off tears.

Probably the biggest frustration for me personally is the mental exhaustion……I am just not able to compute things right now. I am struggling with organizing and putting things together. This might sound so simple and ridiculous to you, but I walked around Superstore 3 times on Monday afternoon with my shopping list in my hand and yet……I just could not seem to make sense of my grocery shopping list. I had to double back to pick stuff up and in the end I had to get Jon to just walk me through the last bit of my list as I just couldn’t make sense of it……even then….we walked away from the store forgetting to pick things up.

I walk around my house forgetting what I was supposed to be doing and why…..

I’ve just gone too far and things that I used to be able to do on brain power alone, and then with lists and prompts and gadgets and reminders…….I find myself unable to do even with all the “help” and tricks that I’m trying.

And that inability to function at the top of my game it makes all of this that much tougher. I don’t’ even feel like I’m functioning “in the game” and that sets off those tears all over again.

I’m trying so very hard to be gentle on myself and yet, I expect so much because I am normally capable….but right now I’m not….and that’s hard for me to deal with.

We reach for the thermometer to take her temperature and inside I am freaking out….praying and hoping and wishing (and truthfully panicking) that the thermometer will read low numbers….that I wont see a number indicating a fever….

Just that stress alone is too much right now….

On Thursday her neutrophil count was not able to be counted (it was too low to be measured…lower than .02). Monday when we took her in for blood work, her counts came back at .1 and while this is much better than the previous count….it’s still WAY TOO LOW and she is still SO at risk.

She will get another set of bloodwork on Thursday and we are hoping that her numbers will be over .75 and she can start Maintenance…..

Did you know that exercise actually boosts your immune system? Like immediately there is a benefit……when oncology kids are getting their bloodwork done to be able to start chemo….they have to be at a certain level in order to start the next phase of chemo. If their levels are borderline low…they will actually have the kids walk around the hospital or walk up and down the stairs a few times and then run another set of bloodwork and it will be up and over the level needed…..amazing isn’t it? It’s huge incentive to exercise especially throughout the fall,winter and spring……just some thing to think about, eh?

We’ve been walking everyday. We are hoping to accomplish a few things with this. One, to boost Angelica’s immune system and to get that neutrophil level up. Two, to increase Angelica’s strength level. She’s spent a great deal of this past year on the couch and it’s time to rebuild up the strength and muscle that she lost. Three, we are getting a little bit of sun, which helps to get extra vitamin D into all of us. That “happy vitamin” is so necessary and good for all of us; plus it puts a little bit of color into Geli’s skin and again with the whole…”she’s spent most of the past year inside and on the couch” business…..between that and being chemo induced anemic…..she’s been looking pretty pasty. The color gives her a bit more of a healthy glow….which matches her new healthy position in life! Don’t worry, I’m a big fan of proper and safe sun exposure.

We are hoping, although we won’t know, that her counts will have come up above .5 (the level that she was allowed to safely go to school at) by tomorrow…..this would allow her to do a few more things like going shopping with us and running errands and things like that.

Once she starts Maintenance, then her counts will obviously be high enough and I will feel like I can breath and relax….

To be honest, I’m scared. I’m scared of feeling like I can relax. I’m scared of how I might feel were I to just relax…. I’ve been trying so hard to keep things all together and it feels a bit like a dam might explode and I don’t feel like I could handle that. I’m scared of the tidal wave of emotions that might be unleashed were I to just relax….

I just want to go and sit somewhere by the beach and let the wind blow in my hair ummmmm, well on my bald head, to feel the sand in my toes…..to just close my eyes, and smell the salt air and let the intensity of this past year just wash away from me with every wave that crashes.

I’m hoping that this summer will be a healing one….and that I’ll get a few chances to make it to the beach.

So What’s Up?????

Well, Jon and Angelica came home on Tuesday afternoon. Basically, they let her go home because she was just sitting in the hospital waiting for her counts to come up.

We really WANTED them to come home and it seemed like her counts were headed in the right direction and so we were kinda pushing for them to let us come home….and they did!

It’s SO NICE to have them both here and for us all to be together.

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happy to be together

It was especially nice for them to be around for Xandra’s Birthday party on Wednesday afternoon because last year……well, last year Xani’s birthday was consumed with the Leukemia diagnosis and it was not the typical celebration of a birthday that we might do. We did celebrate, but it just wasn’t the same with the family split between the hospital and the home.

We fully expected Angelica’s counts to start rising and for them to come up quite quickly.

But, as of her blood test yesterday…..ya, that’s not exactly been the case.

Well, not entirely……

All of her counts HAVE come up except for those darn neutrophils…..those infection fighting white cells….ya, those are the ones that we need to come up. Everything else is coming up nicely. While her white blood count was a 1.9….her neutrophils were too low to even count…..this is NOT GOOD!

So, please, Please, PLEASE pray that ALL of her counts would come up and that she would not get any bacterial infection.

She’s also been coughing a bit and it’s just some stupid virus, but I wonder if it’s affecting her counts in some way. Like, if the neutrophils are being used up by the virus……

So, perfect health and amazing blood test results…….that’s what we’re looking for.

Other than that, we are just hanging low….staying at home…..not really doing anything fun or exciting until her body starts producing a bit more protection for herself.

So while Summer Vacation has started…..we really need her counts to come up before we can really start any “vacation-ing”!

We are on “fever alert” taking temps and doing lots of hand washing and cleaning……it’s a bit stressful, but we just continue on trusting that it will all work out in the end.

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!