Month: June 2010

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

We want to go home

I’ve walked the hallway from Children’s Hospital to Women’s Hospital more than 50 times in the last two days. It’s been such a blessing to have both Patti and Geli on the same floor, just down the hall from each other, but at the same time it’s been a hassle.

Geli had a “bad” day yesterday. She was “NPO” which means no food or water from the midnight before and then was taken downstairs for another bone marrow biopsy and then a Lumbar Puncture (an LP is a hole made in the back to get some spinal fluid so they can do a biopsy on that.) For the procedures she was sedated and then received an anesthetic, and a side effect can be nausea. Then she received more chemo (there are multiple forms of chemo that attack different things), which also causes nausea. So yesterday afternoon she had a slight fever, nausea and was throwing up.

There is also the risk that she has picked up an infection somewhere and the symptoms of that are… nausea and fever. (hence the post from yesterday.) There is a magic number of 38.5 C. If her temp goes above 38.5 then we get an automatic treatment of antibiotics and 10 more days in hospital. She stayed below, albeit just below and has been feeling better today, but she hasn’t completely rebounded. She had a few tests today and everything was within an acceptable range, but they are still monitoring her. If there is a fever that develops then our chances of going home soon are gone.

We are asking for serious prayer that she has NO INFECTIONS, that her temp stabilizes, blood sugar stabilizes and that she is able to eat and drink normal amounts. Patti has just about stayed as long as she will be allowed in the maternity ward and really does not want to go home to 3 kids with a newborn and no husband to help.

Please pray.

It’s my Party and I’ll Cry if I want to

I’m sitting in my room over in BC Women’s Hospital on the labour & delivery ward.

Judah and me are hanging out over here, while Geli and Jon are down the hall at Children’s, in the Oncology Ward.

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We’ve been over with Geli for a good bit of today and then resting while she was gone for her Bone Marrow biopsy and Spinal Fluid Tap and right now we’re just hanging low over here for a moment.

Today has been an “icky” day for Gelica and a “crying” day for me.

Between the excitement of the past few days, chemo treatment, tests, and wacked out sugar levels, Angelica had a barfy, yucky, nasty day……..she’s had no fever though and right now, her blood levels are within normal range – so for that we are so SO thankful.

I’m hitting the end of Judah’s second day of life and facing the lovely hormonal changes that brings. Add on top of that – very little sleep, a leukemia diagnosis, a week of stress and the looming unknown and you have a sure fire recipe for tears.

I’ve cried off and on today and feel some of the built up pressure has released, but I still feel like I could use a really good cry. Just to release all the pressure that’s built up since my last good cry about a week ago.

I hate this. This is nothing that I ever imagined for my daughter, for our immediate family, for our extended family…….it was unfathomable, until now………

I hurt for her. I hurt for Jon. I hurt for my other kids. I hurt!

I look back at some of the little life lessons that I learned over the last year and see how I can use those lessons in my life now.

Probably the biggest one with the HUGEST impact on me………..I learned through this past year in my exercise class!

Stay in the present!

You can handle just about anything that’s in front of you right now. It’s when you race beyond into the future that you can be overwhelmed. I can handle today. Tomorrow I will have the strength that I need to get through that day. If I try to imagine or figure out or plan for the next week or so, or month or 6 months from now…..its too much! The unknown is too great and overwhelming.

So today, I cry and I process and I hope and I cry some more.

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In the middle of my tears, I am aware of some blessings. I am off my feet, even if they have swollen up to elephant size again. I have some amazing quiet, one on one time with my newborn. I’m still with my “baby” even if I’m sleeping down the hall from her. We are being cared for and supported in so many amazing ways by so many amazing people. In the middle of all this chaos, I am blessed and I know it. That doesn’t mean I’m grateful that we’re walking this road, just that I can see some pretty rocks on the path in spite of the dark clouds and rain.

I’ll get through today and when tomorrow comes, I know I’ll be able to get through it as well.

Looking Forward

Angelica was allowed to go to her Grade 7 Farewell/Graduation Party yesterday.

Even in light of Judah’s birth, she was still quite excited about her party that night.

hairOur story seems to go before us everywhere we go and the labor and delivery ward at Women’s Hospital doesn’t seem to be any different. There was a woman who heard about us and she offered to do Angelica’s hair. We were so touched and blessed by her thoughtfulness. Yen had just delivered a baby the day before and yet still came into my room and did a fabulous job of Angelica’s hair.

It was pretty and yet funky and not over the top. Angelica looked so beautiful.

To say Thank You to this woman seems so insignificant and yet we truly are so SO overwhelmed with gratitude and we’re not sure how to adequately express our thankfulness. Just know that we are touched and blessed beyond words. Thank you!

Angelica looked beautiful and although I didn’t go with them….Geli and her dad headed out and made it to the school around 7pm. She got to see her friends. She got her certificate and she got to dance with her friends a little. It was a great night and one that will be a fabulous memory for Gelica. We are thankful to everyone who made this night possible….from dress making, to shoe shopping, to care of the siblings, to school staff, to ones who made dinner, to the Dr’s and nurses and hospital staff……. We are thankful that every detail was taken care of and that everything ran smoothly and that it all worked out for Geli to go.

geliI have more pictures that I’d like to post, but this post is more a request for prayer than it is an update…..

Angelica is taking a few medications and one of the side effects of two of them is that it can affect her blood sugars…..Unfortunately on Wednesday night, her blood sugar levels spiked and they didn’t come down as fast as we’d like. We are now waiting for her sugar levels to level out. If you could pray that everything would work the way it should and that we’d be able to go home tomorrow, we’d really appreciate that.

There was talk of Geli going home today, but it’s not going to happen and obviously, if she’s not in a good position to go home, then we want her to stay where it’s best for her but optimally, we’d love for her to be in a good place health wise to be able to come home.

We are making steps towards a home coming tomorrow, but something else that could throw a monkey wrench into that plan would be if Geli spiked a fever between now and then…..so we are looking for

1) Blood Sugar Stabilization
2) No infections, fevers, or any other illness

Also, please pray that she’ll continue to respond amazingly to the treatment plan that they have her on and that the chemo that she’s receiving today would do it’s job of killing the cancer cells and that the side effects would not bother her.

I feel like I have TON of things to update or post about and yet…..I’m tired.

My HUGE boy wants to eat and eat and eat and eat and I got almost no sleep last night. I’m exhausted! On top of a week of very little sleep….lets just say that “exhausted” is putting it mildly.

We will make it through this season. I am confident of this and yet that doesn’t make any of this easier, does it?

It all seems so surreal and yet entirely WAY TOO REAL!

I don’t even know where to go from here and so I’m stopping for now. I’ll try to post again a bit later.

Day 8 Activities

A word about visitors

Angelica is doing really well on chemotherapy, but she is also dealing with the realities of chemotherapy. She currently has no white cells and that means that she has no immune system. We have to strictly enforce a policy about visitors where noone who is sick or has recently been around someone who is sick can come visit… not even visiting Judah. If Judah picks up an infection, he would probably deal with it without even getting any symptoms because of his immune system, but he could still pass it on to Angelica.

(** We really do want to see you, but this is really serious, so don’t take it personally and don’t take chances. **)

Please Pray

Everything is working out for Gelica to go to her grad tonight. There is a lady on the maternity ward that recently gave birth that is a professional hair dresser that really wants to do her hair. BUT… as per the above, Angelica needs to be able to go, have fun and come back without getting sick. Please pray that she will be protected from all sickness and disease tonight.

I’ll post pictures of the event tomorrow.

Jon

Day 6 – Facing Realities

*** First, some comments submitted to the blog are being held for moderation. We’re not sure why and not looking into it right now, but we are logging in and approving them as fast as we can. If your comment gets held, we are sorry, but it will appear soon. ***

We had the two older siblings come in today to meet with the doctor and team and to address their questions. Those two have not really handled this well for a variety of reasons. The plan is to tackle their questions, perceptions and misunderstandings head-on.

Jeremy saw Patti crying when we first got the news about Angelica. He didn’t understand what leukemia is. He didn’t even really understand what cancer is. He knows that mom doesn’t cry very often, and he is VERY sensitive to emotions. He sucked up that tension and has let it bounce around inside of him for a bit. He has not been sleeping and has not gone to school for a few days. He did try to get back to school, but it wasn’t productive and coupled with the lack of sleep…

Alexandra has read a lot of books and picks up a lot of information. She heard leukemia, then cancer, then I don’t think she heard much else. She started crying and saying “I don’t want Geli to die.” She has been into the hospital and we have explained that Geli will only be here for a week and that the chances of her being totally healthy are really good. But even yesterday she was still talking about Geli being gone for a long long time and really missing her, and wondering about a bunch of stuff.

The doctor (and we have a very nice, personable doctor, that is really good at putting complicated medical stuff into kid language) set up a meeting for 1:00pm today. Jeremy came with a few random thoughts, rather than questions, but he really needed to see everything calm and moving forward and he needed to know that this time (parents gone and various family members being with them at night) was going to be over soon. Xandra came with a book of questions. She asked why Gel’s hair would fall out, what the chemo actually does, what the best case scenario was… and she really didn’t want to ask but she did, what the worst case scenario was.

The doctor listened and replied to all the questions. He was impressed that jeremy knew that 45 years ago, the survival rate for leukemia was only about 4%. (In case you are wondering, the best case is that Geli responds to treatment, doesn’t get any infections during treatment. The worst case is that she would go through treatment and then have a relapse and have to go through treatment again.) He explained everything that the kids asked and listened to jeremy talk about fishing, guns, shooting birds, and other random stuff.

When that was done, I took those two to Science World and let them burn off some energy doing something completely distracting. I wanted to do something special for them and at the same time get a sense of what they got out of the meeting. My assessment was that they were going to be ok.

The realities are not easy, but in the end Angelica will have a normal life. It will be a change to our normal for a few years, but we will get through it as a family. I am pretty sure now that everyone in the family understands in their own way. And just to prove that, Jeremy and Xandra both went to school this morning and seemed to be happy about it.

Jon