Hospital Time

We’ve learned through several encounters with the medical system that projected dates and times are not to be taken all that seriously. It’s not that there is anything wrong with the medical system, it’s just that each person’s reaction to medication, treatment, environment, etc is all different. Add to that the unpredictable nature of how many emergency cases come in during a day that supersede something that you were expecting and we have what we know as “Hospital time”. (for instance, being taken off of your IV line at 2:00pm, might mean 1:30 or 5:00pm and you just have to work around that.)

We understand all the things that go into making the reality the way that it is, but on the 16th of June, we started a journey that has turned our family upside down, and then on the 24th of June, we added to that family a new precious little boy. Both of these events in and of themselves requires a certain amount of readjusting, but put them together and then throw in “Hospital Time”… “Expect to be here 7 days… Make that 10 days”… “we’ll keep you one more night to observe”… “you got a fever, you’re going to have to stay 3 more days so we can check it”… “Its an infection and you will have to be here for a total of 10 to 14 days”… “we have to keep you the full 14 days and your counting is 1 day ahead”… and that brings us to today. (Oh and throw in a 15th wedding anniversary, xandra’s birthday, and fathers day that never really got celebrated)

In 24 days we have not been together through things that we would normally really lean on each other for. Patti and I are a great team and we have learned to be the right kind of support to each other, and we have been forced to do this separated for the whole ordeal so far. If they had told us at the beginning that we might be here for a month, that would have been hard to hear, but we would have been able to plan around that. This process has really been taxing on us.

PLEASE PRAY:
Gelica finishes her 14 days of antibiotics tomorrow am, and if everything else was ok, should could come home. BUT… It seems that she has developed an fissure in her colon (an expected complication of intense chemotherapy), and it could get infected. Also her white blood cell count is microscopically low.

Please pray that the small fissure will be completely healed and that her white blood cell count will rise. If they don’t then we wait day-to-day until she can come.

Pray that Patti and I and our family would be all brought together right now. We really really really miss being together and it is very emotionally challenging.

Thanks for being such a wonderful community and for all of your support, meals, kind comments… thanks to the ladies that came and disinfected almost every surface of our house. Most of all, we know that we are not alone.

Jon

Trying to Hold It Together

We had one of the Residents who has been assigned to Geli’s case come in and talk to us this morning.

It seems that her blood counts are currently too low to allow for her to go home, but there is the possibility that they could raise enough by the weekend……BUT……she then announced that the Infectious Disease People like to see 2 weeks of negative counts before they will release a patient and in Gel’s case I guess they were testing for 2 different things and on the 27th had one neg and one pos and on the 29th both were negative for any infection…this would push our release date from Sunday to Tuesday.

I’m not gonna lie….I’ve been fighting tears ever since they said that. I don’t want to cry and upset or bother Geli as she’s not really said anything yet, but I just want to go home so badly. I’m so upset. I was concerned about this and now feel a bit like, “what’s gonna change as of Tuesday and keep us in here for another few days”….its so stupid.

I’m struggling today.

Really, Really struggling!

Updates…..

So we talked with Angelica’s Dr yesterday afternoon and he shared with us the reports from Geli’s bone marrow biopsy on Friday.

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Apparently, her bone marrow initially was up closer to 97% leukemia cells and has now dropped to 17%. There are some cases where they see the leukemia cells gone within two weeks, but Geli hasn’t responded quite as quickly as that. They are hoping that by day 28 that there will be no more leukemia cells…..

This is our next big prayer request….that Geli’s body would be completely rid of the leukemia cells when they do the next bone marrow biopsy on Friday July 16th.

Because they know that there were still 17% of the cells still there…..they are not going to do a biopsy this Friday but will wait until the last treatment day of this 28 day Induction period.

We have also found out what’s happening regarding the infection that managed to foil our plans for a swift get away from the hospital….

There is no more infection that they can find in Geli’s body BUT……..because they have started a 14 day regimen of antibiotics…they must finish the treatment. So, at this point we are scheduled to leave this upcoming Sunday afternoon……

We are in the countdown….YEEEEEHHHHAAAAWWW!

Angelica is doing well, and aside from the antibiotics – there is no reason for her to stay here. This is GREAT news, but at the same time sucks because we are stuck here until Sunday, and home just sounds so so SO nice.

Its wonderful to see that as the leukemia cells are being killed off, that her body is trying desperately hard to build itself back up. Her blood counts are all still quite low, but her body is trying so hard to rebuild and restore. We are designed and created so amazingly.

Another thing to be praying for…..that Geli doesn’t pick any other bug up from the hospital and that we stay on track to be able to come home on Sunday.

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Big Thanks for the package from New Zealand

Thanks again for all your support, love and prayers.

We are in awe of you all!

Like Ships Passing in the Night….

Jon went home today to spend a little time with the kids and like ships passing in the night……Judah and I took over at the hospital.

It’s nice to see Geli, and nice to be able to sit (see previous post where I birthed an almost 10lb baby) and not be stressing about the 3 highly active kids at home…..or on the flip side to be stressing about my family taking care of my 3 highly active kids. But, I really REALLY miss Jon. I can’t wait to be able to see him and spend some time with him….talking, loving, just being….but it my be a little bit longer before that really happens. And…..such is life!

I ran into someone on Saturday at Superstore and shared a bit about our story. I got to the part where I mentioned that my eldest daughter was just diagnosed with Leukemia….and to be honest, there is a part of saying that, that just seems so dream like….its like I’m watching or hearing someone else talking about their life….There is this feeling that this can’t possibly be MY life…..my daughter’s life…..my family’s life…..that I’m talking about. It still seems a bit surreal.

And yet, it’s WAY TOO REAL….

We’ve shared some pictures, and talked about some of the better times, and about how Geli is doing so well (and she really is) about how we have peace knowing that this will work out, and about how we feel really very positive about this whole situation, and yet there is this other side to this whole situation…..No one really wants to talk about the negative stuff, but I am going to mention it so that if you pray…you know how to pray….

There are times, when Angelica is sick…..That’s hard. The chemo meds make her feel quite nauseous and when you are feeling that sick…..then nothing feels good. It’s the worst right after she receives the chemo….She gets the chemo on Fridays and then feels crappy right through to Sunday or Monday. It makes life very, very miserable.

The bone marrow biopsy hurts….and even though Geli is given meds to sedate her, it ends up feeling like she’s got a giant bruise on the back of her hip. This makes laying or sitting in bed hurt or ache a bit. Again, not fun!

There is a spot of irritation on the back of her throat, and while we are so thankful that Geli doesn’t appear to have massive sores from her mouth down through her digestive system, this little irritation (that they are keeping a close eye on) bugs her just enough that she wants to clear her throat and/or eat something to distract from the tickle feeling. it also makes her feel like she wants to gag….and that sucks!

Her left leg has a cramp behind the knee that extends up into the back of her thigh and they can’t seem to figure out why it’s doing this. It seems to have a numb spot in it and they’ve ruled out that it might be neurological….but don’t have any concrete reason as to why it’s done this….and so she is on crutches because they don’t want her torquing her body like she was, trying to compensate for her leg.

One of her chemo meds is a steriod and it is wreaking havoc with her sugar levels and they have been CRAZY high. Basically, the steriod has put her in a diabetic state. She doesn’t have diabetes, but her body is not able to produce enough insulin to compensate for what the steriod is messing with and so she is on Insulin and has to inject herself 4 times a day. We seem to have finally been able to get the levels under control….just barely. Today was the first day that 3 out of 4 readings were within the acceptable range…..just barely within acceptable, but still within….up unti today they’ve all been almost double what they should have been.

Also, we should be getting the report from the bone marrow biopsy that they did on Friday…..the previous two biopsy’s showed that 86% of her bone marrow was filled with leukemia cells and with the second biopsy it had dropped to 57%. We are praying for an even better report to come tomorrow…..

And, we are also requesting prayer that Angelica and everyone in our family….both immediate and extended would be and remain healthy.

We’d also love that the infection that Geli had to be completely wiped out of her body asap so that we can all go home together……that would be such a HUGE blessing……

She’s been in the hospital now for 19 days….and although the staff here at Children’s Hospital is amazing and we can’t complain about our stay….it would be so nice to have our family reunited once again and all under one roof.

I’d also like to take a quick moment to say thank you to everyone who has co-ordinated with my sister Michelle regarding meals for our family. The meals have been amazing. There hasn’t been one yet that wasn’t delicious and such a huge HUGE blessing. I’m so thankful to all stepped in and helped us out in this way. It’s so amazing to me to know that my kids and family are able to eat well and that I don’t have to be stressing about them eating out or eating unhealthily.

Thank you to every single one who has brought a meal……I am so grateful. I feel so very loved, and supported and blessed. It means a lot to me that you all would work within our dietary needs and requests and still help us out.

Thank You!

Judah…..with Pictures!!!

Alright, so there is no way that under “normal” circumstances that I’d have ever gone this long without posting a ton of pics of our newest, sweet, little man, but these are far from “normal” circumstances.

We have TONS of things to share about Geli, about Judah, about our family, about many other things; but…….it all requires energy and time….and those are two things that we seem to be running short on these days.

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I’ve uploaded a bunch of pictures to Flickr and will direct any of you (Mum C – this is for you specifically) there for cuteness overload. You can click the link or click on any of the pics…I’ve not edited any of them….just threw them up, sorry! It’s that whole lack of time/energy thing……….

Judah is a doll. A GIANT doll, but a doll, nonetheless.

He was 22 inches long at birth, and weighed in at a healthy 9 pounds 15 ounces. He managed to lose almost a pound and went down to 9lbs 1 oz, but as of Tuesday (day 5 of life for him) he was back up to 9 pounds 11 ounces and my midwife is coming by this morning and figures that he’ll be back up to his birthweight by today. Apparently I’m feeding him straight cream….lovely!

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He had a bit of jaundice, but I think that’s because he was quite tongue tied at birth. We had a pediatrician at Women’s come at look at him and he was able to clip his tongue and that made nursing MUCH easier…..and the jaundice is fading quite quickly.

For whatever reason, his latch on my left side has been a bit funky and I’m in a little bit of pain, but it’s getting better now…..

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He doesn’t cry often, but when he does, he has a HUGE scream, which is so different from Siah. I figure as the baby of 5 kids that being able to make yourself heard and understood is not necessarily a bad thing.

He’s currently sleeping from feeding to feeding through the night, except for the first night home when he was awake and/or feeding from 3am to 6am….and then Siah woke up at 6am….to say that was a rough day as far as sleep deprivation would be putting it mildly.

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I’ll try to find some time to type up the birth story for anyone interested. Things were so far from what we had thought or planned and yet in spite of it all….it was a lovely, amazing beautiful birth that I will forever remember as quiet, peaceful and a calm moment in the middle of all this chaos and pain and confusion……it was the calm within a storm and even though I was so worried that it would be a horrid experience, it was anything but….. It was absolutely lovely!

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I don’t have as many pics of his first few days as I’d like but in the grand scheme of things…….it’s okay. It is what it is, and we’re carrying on.

I have good moments, and sad moments and better moments and its all okay! Everyday brings us all closer to the day when we’ll be reunited as a family and for that we are thankful. We are all struggling through this in our own ways, but we are being carried throughout this and we know and sense this. Peace that defies common sense within the swirling chaos. It’s an amazing thing!

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I hope you enjoy the pictures and I’ll try to get up more.

Thank you to everyone for your understanding at this time.

I know that Jon’s mentioned a few times about not visiting if you’re feeling sick and I’m gonna take a minute to be really clear and blunt….

Normally, when someone is sick or when you have a baby it’s customary for everyone to want to come and see and congratulate or to visit and cheer you up when you’re not feeling well……and in this case, we are asking you all to do the exact opposite.

If you are feeling even the slightest bit “off” or have a cold or cough or you think that you might not be feeling well or EVEN…..if you have been in close contact with your child or partner who’s been sick or you’ve visited your mother who’s had a cold or a fellow employee has been sick…..please PLEASE!!!!!! Don’t come and visit us at the hospital or at home….

Send your love, send your prayers, but please don’t share your illness.

Angelica has NO way…absolutely no way of fighting infection or illness of any kind. So, if someone who is just starting to feel off, but still feels fine visits her, she can’t fight off whatever you have……..and could get very sick.

The same goes for us….if you come around us (the rest of the family) and we get sick, then none of us can go in and visit her…..and just being honest…..that would be very, VERY, VERY hard on all of us.

So please, we’re asking that unless you are perfectly healthy and know that you’ve not been in contact with anyone who is sick, to please stay away until you are certain that you are not able to spread any illness to any of us.

This is not a forever thing. This is a right now….for the next month or two, kinda thing………her counts are the lowest they are going to be over this whole process right now and so we’d like to make things as easy for us as possible and staying healthy is a HUGE one.

Thank you for your understanding in this matter…..we appreciate your prayers and love and thank you for working with us in this.

I know it defies every “normal” thing that we want to do at times like this, but….it’s only just a season. And to everyone who has mentioned that they haven’t come because they’ve not been feeling well……THANK YOU! Honestly, we thank you more for not coming. It’s HUGE to us that you care so much that you’d put our health before your desires to comfort and love.

Angelica has already had her bone marrow biopsy and is just now (at 12:30ish) getting the chemo meds. We’d love if you’d stand with us that the meds would do thier job and kill the cancer cells, but that she’d be strong physically and not get massively sick as a result of the chemo……we believe in miracles and expect to see great things come out of all of this.

We don’t believe that “God only gives what you can handle” as that implies that God did this to her and to us…..but we do believe that even though bad things might happen, that He is there with us and that we will see good things in the middle of all of this….and we have…..

Your love and support has spoken so much to us through our short time on this road and we know that we have “family” all over the world standing with us, loving, praying, supporting us and carrying us through those times when we feel tired, exhausted and overwhelmed…..to know that we have such a solid support base under us is AMAZING!

In the middle of the tears, and the laughter and the pain and the joy……we can feel the strength of love and it carries us and lifts us up………

Thanks for being a part of this!

Happy Canada Day – Extended Stay Update

I was reading through the blog and realized that I never updated on the status of Angelica and whether she had to stay for 3 days or 14. Being as today is July 1st, and we were getting checked for an infection on June 26th and that makes 5 days… We did in fact test positive for a gram negative bacilli bacteria. There are apparently a whole family of bacteria with this class, and I don’t know enough to adequately explain where it came from, but I do know that after two days of receiving the antibiotic specific to the bacteria, Angelica is feeling much much much better.

It also means that we get the extended stay of 10 – 14 days. (which would put us going home next Wednesday to Sunday sometime).

Now that Angelica is feeling better…

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we are making kale chips

And…
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Playing Settlers

But all this comes with a price… My mom (Mrs Culley Sr.) has not been able to see the baby or visit Angelica for over a week because she had/has a cold, and if you know Merrilyn, she loves her grand kids and would never go that long without seeing her grand daughter in hospital, and would never never never wait that long to see her new-born grand son.

But you might be saying… the baby is home now, why can’t Merr go see the baby at home and how could that effect Angelica??? Well, Angelica’s immune system is so low right now that we have to keep the members of our immediate family illness free, or else we have to stop visiting. And right now, Patti cannot go without being able to at least visit on a regular basis. So people with coughs and colds need to keep away from our whole family. (My mom has been amazing at understanding all this and I would like to thank her as this is really really hard for her.)

Well keep praying that she doesn’t get further infections, that we have the least amount of complications and that our family gets reunited very very soon.

Happy Birthday Alexandra

In the middle of all this other chaos, it is very important to me that this very important day doesn’t get forgotten about.

It is with great pleasure and many gushing happy feelings, that I wish my sweet Alexandra Janelle Culley a happy 12th birthday.

Alexandra Culley

My Sweet Xani
Happy 12th Birthday

Alexandra is having to miss out on a family birthday dinner and having me there to hug her today, so feel free to leave birthday wishes with her here so that she can “fell the love”.

Jon

Edited to include Xani’s comment:

Well apparently I’ll be celebrating most of the summer. One tonight with Geli, Tomorrow with Amy, one with school friends, and some time with Nana Culley. But thanks for all the happy B-days.

love Xan

Alex Hope Elementary

One of the things that Angelica has said is how amazing it is to see all the people that are praying for her and that care about her. There have been a lot of people and groups that have been amazing, but I want to highlight one special community. We have received an amazing amount of support from Angelica’s School.

Alex Hope Elementary

We have three kids that have been going to Alex Hope this last year but we just moved there before the beginning of this year. So we’ve only given them a year to get to know us. Then at the end of the year, we break the news that one of their ‘new’ grade 7 grads has been diagnosed with leukemia.

This community has been amazing… really amazing. Each of the classes has been very supportive. The parents in Jeremy’s class have organized fund-raisers. The principle handed me a significant number of gift cards for groceries. Others that we barely know have walked up and handed us small gifts. And we are stunned. (We’re sorry if we give you a deer-in-the-headlights look if you’ve come up to talk to us, we are just so overwhelmed.)

And, we’ve found out some of the costs of this process on our family and our budget, and the help is truly amazing.

We are very blessed to be a part of this amazing community. Thank You Alex Hope!

The Long Cry Home (this one’s all about me)

I drove away from the hospital yesterday afternoon bawling.

I had my newborn along with me in the back of the van, a freak load of stuff that we’d collected over the week and half that we’d already been in the hospital, my labor and delivery bag and Judah’s new born bag…..oh, and WAY TOO MUCH GARBAGE on the floor of the van…..not cool!

The baby was crying and I was crying, the weather was grey and icky and it almost matched my mood. Had it been raining hard – the scene woulda been straight out of a movie.

We’ve been through some tough stuff in our lives, and I’m not sure if it’s the combination of everything or just the immediacy of it all, but honestly, this feels like the worst thing that we’ve gone through….even tougher than losing Nathaniel or having Chris almost die……

I’ve never questioned the “Why’s” before, but I’ll admit that it’s been harder and harder to push those thoughts from my head.

I’m doing better today than I was yesterday, but this is not easy.

I think I knew in my heart that the likely hood of us all going home together was steadily declining, but I hoped….OH HOW I HOPED. I was so grateful to the hospital for allowing me to stay over Saturday night, as I really needed that extra day to prepare myself to leave the hospital by myself…..I wasn’t really acknowledging that was our reality, but I think that somewhere deep down in side me – I knew…..

And…..it sucked every bit as bad as I knew it would…..

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Life’s not always easy or happy but we carry on….

You don’t have a baby and expect to spend the first 3 days mostly by yourself…….knowing that every time you selfishly want your husband with you that it means that your other baby is then alone. Or the rest of the time sitting in a room in the Oncology ward watching your firstborn puking after being filled with life saving poison…….. This whole motherhood thing…while some parts of it come easy to me – other parts are so SO difficult. I want to be with Geli. I want to comfort her. I want to help her. I am her mother. I am in tune with her. I know when she’s hurting and trying to suck it up and right now……I’m an hour away from her and can’t do ANYTHING. But, being with her means that I’m leaving my other babies who are not doing so well with all of this either, and so I have to make the worse choices….I have to choose…..Sometimes, having to make choices……SUCKS!

We are all on edge and hurting and confused and nothing about this is easy.

Xani lost it hard last night. Which was AWESOME and horrid. And to be honest….I envy her the meltdown. I want to scream and wail and fall apart and yet I’m scared that if I do – I won’t be able to pull myself back together to be there for the kids and Jon and Geli and we still have a ways to go until we are re-united as a family and until then…..I’m holding down the fort over here and….well….I’m not even sure where to go with this……

I’m upset.

I keep thinking that Jon is going to be missing our son’s first month of life. I wonder if I’m strong enough to handle all of this on my own. I lean so heavily on Jon for so many things. I miss him so bad. I hate not being there for Geli. I hate feeling so all over the place like this. I feel SO EMOTIONALLY FRAGILE.

I cried and whimpered my way home from the hospital, but as I rounded the corner to our street, a HUGE WAILING SOB tore itself from the core of me….the sheer intensity of it scared me and I was too close to home to allow it all to escape and so I stuffed it back down….unhealthy I know, but it is coming out…..I’d probably do better to just go for it, but for now….I’m leaking it out.

For those who prayed for me yesterday, I was able to hold it together while at the hospital in front of Geli, but she’s not a stupid kid….we were all a bit bummed yesterday.

And today, I acknowledge what I felt yesterday. I know I still need to process through some of the tough, core emotions, but I’m trying to stay present…..even minute by minute if necessary. We had to do this with Xandra this morning…..don’t look at the whole day, just the next task on the list….just make your lunch and then we’ll see how you’re feeling…..then eat breakfast and we’ll re-evaluate the whole idea of going to school this morning after that……and taking things minute by minute (and after a good conversation with Daddy) she headed off to school this morning…..and that is a little how my day is going too.

Right now I’m using this as a bit of therapy….being able to take all those thoughts in my head and acknowledge them, write them out and then try to let them go.

Then I need to make a list of things I need around the house and then figure out what to send to Geli.

Then I’m going to look at my e-mail inbox….that thought alone is scary…..let alone actually tackling the actual task. (Your support has been amazing by the way, and I am am so SO thankful).

After that….well, Jeremy has a play at school that I need to go to, and then we’ll just see…..One minute at a time, if necessary.

(I have a bit of a disclaimer for any who might have started reading recently. I’m honest – for the most part – on this website. By the phrase – …..honest, for the most part – I mean that I don’t share everything that goes on in our lives. I’m open about a lot of things, but by no means are any of the posts on this website a clear indication of EVERYTHING that is going on in our lives or inside my head space. It’s a “piece” of the whole….a glimpse of who I am and what I’m going through and by extension, who our family is and what they are going through. I’m sharing bits of myself with you and I’m not unwise. This is a tough time in my life and I’m expressing some of what I’m feeling and what I’m going through. I’m very aware of my mental health and although I seem to be a bit emotionally unstable at this exact moment, I will continue to monitor where I’m at and to listen to my close family and health care professionals regarding my mental health. I’m not asking for advice or input in this area. I’m merely allowing a piece of the trauma and pain of this time in our lives to be open and “out there”. I will be okay. I am okay. Please don’t feel that it’s your job to carry me. I am carried through this and we will make it through this. I know this.

I know that I know that I know that I know….that we will make it through this….sometimes, in life, our feelings don’t always line up with the knowledge that lives in the very core of our being and sometimes you just need to acknowledge the pain and hurt so that you can then, let it go.

This space is an amazing place for me. I can process. i can vent. I can share information. I can be silly. I can be happy or sad…..this website is just a glimpse or a small extension of myself……I’m happy to let you be a part of this, but if you are wondering how to “help me”……I’ll just let you know that your love, support, care, encouraging words…mean so much. You don’t have to fix me…..or make me aware of where I’m at…..I promise. I have ones to do that for/with me. The biggest thing you can do is to love and encourage….and you have done so MARVELOUSLY! For that, I thank you! I don’t know if you’ll ever know the full extent that your love and care, support and encouragement have helped. I read and re-read your comments. They come in at the perfect time and sometimes inspire tears or laughter……but always comfort and love.

Thank you so much for walking along side of me (and us) as we travel this road and although it seems to feel at times like we are walking on loose gravel, I know that the shoes I’m wearing are more than adequate to be able to handle the terrain on this road and that irregardless, I have many hands to grasp onto should I feel tired or like I’m stumbling.

Once again, I say……

Thank You!

You are amazing!)

A bit of what life is like now

After what seemed like Angelica settling down and probably going home this morning, she spiked a fever last night. Because there are no white cells in her body right now, she has no immune system and cannot fight infection. Any fever is treated as a worst-case scenario until it is proven otherwise. So immediately they put antibiotics in her IV and then gave her Tylenol. Patti is going to go home today with Judah and I am going to stay with Angelica.

This is not what we wanted, but it is the reality of what we are dealing with. For the next few months, we have to take Gelica’s temp several times a day and any spike in temperature, we have to be here at Children’s within an hour. Then the protocol will go like this:

First they start antibiotics, then they draw a fair amount of blood to run a culture and see if the problem is viral or bacterial. If it is viral, then they will treat what they can and we might go home, or if it is bacterial, then we stay for the length of the antibiotic treatment. The blood culture takes between 2 and 3 days, and antibiotics take between 10 and 14 days. SO… ANY fever this summer means 3-14 days in Children’s. (This is on top of the dozen or so outpatient appointments that we have to be here for.)

So for the next few months, we have to be very clean and careful.

Thanks for all of your prayers and comments. Thanks to those that have brought food to our house for the other kids to have while we are out. Thanks for the visitors that have come and thanks to the visitors that didn’t come because they were sick. Please continue to lift us in prayer through this summer.

Jon