Father’s Day

271754719_2ca7140892Today is father’s day and I am sitting in the bed next to my daughter who is getting chemo. Patti asked me today if this is what I had hoped father’s day would be like. I think that as special days go for dads, there are things that we would all like to have… coffee made for me in the morning, maybe a gift or two, maybe get out of house work. Then maybe do something special with the kids.

So, Starbucks made my coffee, I got the gift of increasingly better numbers on Geli’s blood tests, the cleaning staff are taking care of all of the chores, and for a special outing… they are taking Geli off of the IV for about an hour today, so that she can walk around the hospital a bit. A Perfect Father’s Day.

Ok, so that’s a bit tongue-in-cheek, but in reality, there is something greater that I get to do today. As a father, yea I want today to be a bit nicey-nice for me, but in my heart, I am a dad… a defender of my family… a warrior at heart. Today, on father’s day, I get to fight for my daughter. I get to help her fight. I get to walk her through things that build character. I get to help uncover the truths that will set her free. I get to say words that inspire, build confidence, and words that frame a picture of a goal that is on the other side of this journey. There is nothing better on Father’s Day, than to be able to be a father, in every sense of the word.

So though we might be in the valleys… in a sense, I am on top of the world today.

Jon

39 Weeks plus 1 Day

This is officially the longest that I’ve ever been pregnant.

Both Angelica and Josiah were born 1 week to the day before my due date and Jeremy and Xandra were earlier than that.

I’m doing okay aside from this………….

swollen ankles and feet

I have puffy, puffy, PUFFY ankles and feet. The swelling starts just above my ankles and continues down to my toes….it’s lovely. It doesn’t hurt, but it is slightly uncomfortable.

I don’t really have a belly shot, but I’d like to get one…..hopefully today sometime.

We are wanting to get the cord blood from our baby in the occasion that it could be a help to Angelica. This means that I need to deliver here at BC Women’s Hospital……or that would be the best case scenario for us at this time. It’s not what I’d planned, but it is what would work out best for this situation here and now.

So this means that because I have in the past had quick labors that I need to hang around the hospital just in case this time goes quickly as well. It would be not cool were I to go into labor and try to get into BC Women’s from Langley only to have the baby in the car. Jon does not want to miss the delivery of our baby and so he too is here. This leaves our children in the loving care of our family and friends and we are so thankful that Angelica is expected to come home by next weekend. It’s not that long and I’m guessing that I’d have the baby within that time anyway.

We decided against inducing this weekend to give our little man a bit longer to cook, if necessary and to allow for labour to start naturally if possible.

Probably, the best case scenario would be if I gave birth close to the end of next week (which coincides when Geli is supposed to be coming home) and then we could all just go home together.

I’d initially thought that maybe I could hope to hold out on having this baby until I went home and then I could just go back to our original plans for birth and delivery with my midwife….but after talking with the lab who deals with the cord blood, I think it would be the best idea to have the baby here….not my first choice but possibly the best case in this messy situation.

I think that the stress of everything has stalled things from progressing as they seemed to be doing. Aside from the very stressful Thursday which ended up with me being monitored and having contractions 6 mins apart there have been a few twinges here and there, but nothing where I’ve really wondered if this was the start of something.

The midwife that I’ve had caring for me here in Vancouver has been unbelievable. June Friesen has gone so far above and beyond in her care of me….I don’t even have adequate words to describe how caring she’s been or how much she’s been here for us or walked us through some of the hardest and stressful days that we’ve had so far. She is an amazing midwife and I’m so thankful that Cathy referred us to her care. Although I miss Cathy terribly, I am in amazing hands and I’m so grateful to have such caring women as a part of bringing our newest little man into this world.

I did have a non-stress test yesterday and he is doing well.

I’ll try to get a picture of myself today and back add it to this post……(DONE)

39 Weeks 2 Days

Day 3 Wrap Up

If yesterday were to be considered a terrible, horrible, no good day….then today could be considered GLORIOUS!

It started off a bit rough, but by 10 or 11am it had picked up and now we are getting ready to settle down for the night.

Geli felt quite nauseous this morning and had a fair amount of pain. She got her morning meds and while we waited for her body to settle out she sat in the rocking chair in her room. She said that it was more comfortable than feeling slouched on bed.

She read through a whole ton of comments from you all on my Blackberry……

Reading Comments on the Blog

And in the middle of that got a call from one of her closest friends at school….

On the Phone with Karli

She was still feeling pretty icky at this point, but chatting with a friend definitely made her day a bit better.

Her other closest friend called her not too long after and that was pretty awesome, as well.

Aunty Debbie and Jack and Nana Karen and Siah showed up right round 10:30am – 11am and it was so nice to see them.

Aunty Debbie & Jack

Snuggles with Jack can make anyone feel better.

Wazzup?

She also played some card games with Nana Karen while mommy and daddy spent a little bit of time with Siah.

Card Games with Nana Karen

Soon after, we headed down to the playroom and then her cousins showed up. We got to play some air hockey and that was so much fun. Lots of laughter and smiles and teasing….

Air Hockey

And then Uncle Eddy showed up with presents. It was so nice to see him.

Uncle Eddy & Gelica

Siah found some dress up clothes and dressed up like a princess. Momma looks like a blimp.

Siah & Momma

Before everyone took off, we had some snuggles with Baby Zacharias. Baby snuggles are the best EVER! But he wasn’t really that upset….this is just a cranky looking picture.

Cuddles with Baby Zach

Angelica got to take a shower today and change into her very own clothes and that was SOOOOOOOO NICE. To be able to get all nice and clean and she even got her bed changed out. There is nothing like being all clean and sliding into clean sheets….mmmmmmmm!

After a Shower

We’ve just been watching a movie and eating dinner in bed and relaxing after a busy but fun day. This is the best day that Angelica has had in over a week and a half. No fever! Smiles! Color in her face! An appetite! Presents! Family and Friends! Air Hockey!

It was awesome.

It was so nice to have an almost seemingly normal day in the middle of all this craziness.

She is still a little bit sore from the surgery, but it’s only been almost 48 hours since her surgery and so really a little bit of pain is not bad.

We’re feeling pretty good about things and are just taking things one day at a time. We’ve talked about good times and bad times and about how life come with good and bad times and how we don’t get to choose to only have good times, but that when a bad time comes you can just ride it out the best that you can and if you have a terrible, no good horrible bad day, then you cry and wait it out and if you have a good day, then just enjoy it for what it is…..This is life. This is our new normal! This is our reality! And we’re gonna be okay. All of us!

I might come back and post about how tomorrow sucks or about how it’s amazing too. We’re just real people with real issues and real emotions and we’re just gonna take all of this one step at a time.

If you’d like, we’d love if you could pray that Geli wouldn’t feel sick and nauseated tomorrow morning and that she’d have a great night of sleep and that the VAD site would heal up quickly. Also, that all her blood counts would do what they are supposed to do. Some need to go up and some need to go down.

Again, we feel so cared for and loved. You are an amazing community of people and we THANK YOU with everything in us.

Day 3 – New Roads to Travel

I’ve been awake since 5am when Geli woke to use the toilet.

She went to bed last night around 8:30-9:00pm and at 6:30 this morning is still asleep. She only woke twice last night and every time was able to get straight back to sleep. I’m so thankful that she’s able to get some good rest. As her momma, I worry about things like that…..you know, getting enough rest and not being too worn out…..Sometimes its the little things that kinda stick with us.

Yesterday was a good day and a hard day.

So much of life is that dichotomy of good and bad, joy and pain, peace and fear, strength and weakness and yet…..we continue on!

Some….some very tiny small sliver of our current reality hit Geli yesterday and combined with everything else overwhelmed her. She was in pain from her surgery. The “realness” of being in the hospital and being sick hit her and made for a bit of an emotional day. I still don’t think that the huge-ness of this all has really hit home – for her or for us.

I know that I’m still processing through the shock of all of this in my way and I believe that Jon and Geli are doing the same. And so are our other kids and our extended family. It’s a day by day thing and just as we learned with Chris and his journey back to a new life – a lot of it comes day by day and you have the strength needed for the day. It’s much easier to focus on what’s happening now than to try to plan and arrange and control everything else. It’s so beyond our control anyway……..

Family Wall

Family Picture Wall

we’re missing a few pics still

As Jon mentioned in the previous post, we did have a big meeting yesterday with Angelica’s Team and as far and meetings regarding your child and cancer go…..I’d say it was a pretty good one.

We are still at the beginning of this journey and we have a long way to go, but it is good to hear that the prognosis for this kind of cancer is so good.

The Doctor who is in charge of Geli’s case walked us through the different meds that she’d be on over the next 28 days and went through the most common side effects. Over all, while it doesn’t sound that great, it also doesn’t sound that bad….

This is one thing that I’d love specific prayer in regards to….That Angelica would physically be strong through this time and that the “expected” side effects would not affect her negatively.

First Official Chemo Treatment

first official chemo treatment

Some of the most common side effects are things like nausea and constipation and there are other’s but I’m sitting in her room typing this post in the dark and can’t specifically remember each one…..to say that we were overloaded with info yesterday would be an understatement. Fortunately, we have amazing references, notes taken and given to us, a team ready at our call and a whole staff that is willing to go above and beyond to answer any questions we might have.

I do feel an amazing peace about this situation and yesterday was a much better emotional day for me although I do still feel a bit like my “bell’s been rung” or my “boat’s been rocked”. I’ve not been knocked out or drowned, just shaken up some. And….when the emotion hits, I cry….and then I carry on…..because, this is life. This is our life and we will get through this.

I asked the Dr yesterday how long he figured Geli’d been sick for and he guestimated a month or two and in hindsite, we can see how that time line would match up with certain symptoms that she might have had, but also ones that are completely normal for a 13 year old girl….things like fatigue and bone pain and headaches…..

There is nothing we could have done to caught this earlier. There is nothing that we did to cause this. It just “is what it is” and we go from here. Inside her body, the cancer cells double and so that explains how she could seem fine or okay on the Wednesday that she left for camp and then to come home on Friday so sick…..when the cells start to multiply from 10 million to 20 million….well, that’s a much more significant jump as opposed to 1 to 2 and 2 to 4 and 4 to 8…….

They figure that with the start of the chemo…she will start to feel better and we should notice an improvement before this next week is up. I’m looking forward to that. It’s been hard seeing her hurting and just laying in bed. She did finally eat dinner last night and that was probably her most significant meal since our dinner on Wednesday night was interrupted by “that” phone call from our family Dr.

I’m looking forward to seeing what this new day brings. She is enjoying the visitor’s that pop by. I’ll just be honest and say that shorter visits are better than long ones….She likes to see people, but to have to entertain is hard……But she’d love to have you stop by and say hello, maybe play a quick game of cards or let her know what’s going on in your life…..normal things.

Sisters

She asked her Dr about the possibility of getting to her Grade 7 Graduation Event which is happening next Thursday. They’ve not 100% okay’d that, but they have talked about setting that as a goal and possibly having her go to that on a 4 hour pass. She’d have to come back to the hospital that night and finish up some stuff on Friday…possibly getting to go home on Saturday.

So, we have our first goal……get to the Grade 7 Grad…….

While it doesn’t seem so important to us, in the grand scheme of things – it’s important to her and so therefor…..it’s important. That could also be something else specifically prayed for…that she’d be able to go, that she’d be healthy enough and that her blood counts would be good enough to have to go.

I’d love to see miracles in all of this. I’m expecting to see her do way better than the Dr’s predict what is normal. Thank you for praying. Thank you for your notes of encouragement. Thank you for loving us. I woke up this morning and checked my blackberry and had a ton of e-mails of love and support and I just cried……knowing, hearing, reading about how much we are loved and cared for and supported through this time is HUGE! Thank you! THANK YOU! We appreciate you so much!

ps. to see more pics you can click on this link or click on the photo’s tab in the menu bar at the top of the page.

98% – 28 Days

We just had a meeting with Geli’s doctors and ALL the support staff, all crammed into her room. The diagnosis is that she has Leukemia ALL Type B. Based on the tests from yesterday, she does not have any Leukemia cells in her spinal fluid, which is really good. She will have a whole series of medications that will treat this exact condition and will have to be in hospital for a week.

The statistics are that 98% of kids that have this condition that get this treatment are cancer free within 28 days. The treatment then continues for two more years (although it reduces down to a couple pills that she takes once a week).

As far as this bad news goes, this is as good as it gets.

There are side effects and it will change a few things about life. Angelica will loose her hair (but she does get a custom-designed wig – i’m trying to get her to go for multi-coloured spikes). She will have to come into the hospital for a couple of days a week for most of the summer. She will have to start high school missing a few days from school every 10 days or so and work with a tutor here to keep up. But by Christmas she should be able to return to normal life.

Thanks for your prayers and comments (she reads them all).

jon

Of Note

Angelica is feeling a bit overwhelmed today.

She just left to go have an echo cardiogram done and just before she left she started crying.

I’m not upset about this at all as it means that she is starting to process things. Often she stuffs her feelings and emotions and for her to let herself cry would be a good thing.

Please pray that she is able to process through some of the feelings and emotions and to be able to handle all of this in a healthy emotional way.

This is a HUGE thing for anyone to deal with let alone a 13 year old. It’s hard to see her hurting and crying but at the same time I’m so thankful for it.

Angelica – Start of Day 2

Well, we had an uneventful night last night.

Around 7:30pm, Angelica went into surgery and got a VAD placed into her chest. She went through the approx 60 minute surgery like a champ and was quite groggy when she got back to her room. After a few sips of juice – the first food she’d been allowed all day – she just relaxed in her bed.

Angelica fell asleep around 10pm and slept most un-interrupted until about 1:30am. We had a short Jaunt to the toilet at that point and then got back to bed. She was in a bit of pain from the VAD and so got some meds to help with that.

She slept again until 5am when we needed to make a second trip across the hall. Once finished her business over there, she came back to bed and was out again until 7am this morning.

We brushed our teeth, had a few bites of cereal, ate 2 pieces of soggy bacon (maybe not the best choice – she feels a bit gross now) and have had our vitals checked. She’s doing well, but tired. Her counts are a bit low which would be a factor there.

So far, we’ve heard that she will probably be having an echo cardiogram today sometime around 12:30pm….this could mean around 4pm hospital time.

She’s resting in her bed and watching Road to Terabithia.

Last night her brothers and sister managed a visit, but it’s hard when you’re not feeling that great. Mostly the kids just needed to see Geli and know that she was doing okay. They explored the hospital a bit and watched some of a movie with Geli and then Nana Karen took them home.

Around 7:30pm – Brianna, Rebecca, Zacharius, Aunty Chelle, and Uncle Kenny came by for a quick visit. Angelica had been sleeping, but they met her in the hall on the way to her surgery and were able to give a quick hug and say a quick hello before Geli was taken in to be put to sleep. They brought presents and although Gel wasn’t able to open them last night. So far we’ve opened one present already this morning. It was a nice morning treat. Thanks Guys!

Jon and I went to Labor and Delivery last night to try and figure out what the plan is as far as me having our sweet boy and I’ll write about the chaos of that in another post.

We thank you so much for your encouragement and prayers and support and love.

This time seems so surreal and to feel my phone buzzing all day long with encouraging messages and love and prayers being sent our way means SO MUCH! It helps us to feel connected to this amazing network of love. Thank you.

We are supposed to be having a family meeting with the Dr’s and Staff here at Children’s around noon today and should know the outcome of the bone marrow biopsy and spinal fluid tap (these were done yesterday afternoon) and have more ideas about what the plan is moving forward.

The staff here is amazing and we are so thankful.

I slept in the room with Geli last night and Jon slept in the playroom on the teeniest little couch. Originally they set us up with a room in the Easter Seals house, but due to certain circumstances we both stayed close. More on that soon.

Hospital Adventure – Day 1 AM

DSC00296The good folks at Vancouver Children’s Hospital have a guest WIFI internet hotspot, but I can only see web pages and cant get e-mail (for the techy people all extra ports are blocked so I can’t even see webmail – I can however get e-mail on my blackberry). So now that we know what my connection environment is like, i’ll proceed with an update.

We made it into the hospital last night after some bad results from a blood test in the morning. We got here around 8:00PM and found an almost empty emergency room. We were seen right away, but it was a bit of hurry-up-and-wait. We had a few check-ins with triage types and then were sent to a small treatment room to await an actual doctor.

The first doctor was a resident and gave us a bit of a roller-coaster emotional ride. He told us that the blood work test came back positive for mono-nucleosis and going through the list of symptoms, said that all of them could be explained by mono, but were a-typical. I really felt strongly to stay even keel and that we weren’t done yet, so I opted out of the roller coaster.

They took a bunch more blood to redo the tests and do a few more. After a fair bit more waiting, the hematology / oncology doctor came in and discussed the results of the tests and the results were the opposite. He was quite sure that they were leukemia blast cells and that the mono was probably a false positive. In the end further tests confirmed this.

A few numbers:

  • A normal person has a white-cell count between 5000 – 10000. Angelica is 18500. Adult leukemia (different than in children) presents upwards of 50000.
  • Angelica had a low red-cell count yesterday morning (don’t know how low) and it came up to 85 last night. It was down at 55 this morning, but the doctors are not worried about that at all.
  • The biggest concern is platelets. A normal person has a platelet count around 125. Angelica was at 9 last night. She has received a platelet transfusion overnight that has brought that number up to 40, but they need it to be above 50 to do a marrow biopsy. (Platelets are responsible for starting the clotting process and not having them means that when you bleed, it wont stop.)

Angelica is doing really well. We had a good talk on the way in to the hospital about what to expect and what it means to have faith and what leukemia is and the fact that doctors speak about the facts and statistics and that we can focus on those or we can focus on what God says the outcome will be. She does tend to process internally and so I am keeping an eye on that, but I honestly believe that she has no fear. She’s an amazing girl.

Also of note, Patti is about to give birth to #5. This is significant in that there are some treatments for some types of leukemia that involve stem-cells from a new-born umbilical cord and placenta. We had been planning on having the baby in langley, but Women’s hospital is next door and the maternity ward connects the two hospitals, so patti is talking to our midwife about that right now.

Angelica Update 6-17-10

Jon and Geli got into Children’s Hospital last night and finally got moved into a room around 2am.

We signed off to get some sleep around 2:30am and I’ve not heard from them this morning.

DSC_0247

There was some initial confusion regarding the blood work and it looked like it might not be leukemia, but rather an atypical form of mono.

After some more tests, and a meeting with the Hematology/Oncology Doctor, his initial feeling is that it is a type or form of Leukemia that we are fighting against.

Her platelets were low enough last night that they gave her a transfusion over night. She also had her blood work re-done and had an x-ray.

The plan for today, as of last night (or early this morning), was to do a bone marrow biopsy and to test some of her spinal fluid. Both of these tests should bring more answers.

There has been some discussion with the Dr. at Children’s about the possibility of using Cord Blood from the baby to help Angelica and we should know more on that today.

It’s not something that we had thought about or looked into or planned for and so we need grace and wisdom and the timing of everything to work out perfectly.

I have an appointment with my midwife this morning at 10am and obviously will have a ton to discuss.

We will continue to update and let you know where we are at and we so covet your prayers at this time.

Things to pray for:

Angelica seems way too calm according to the staff at the hospital. She has a tendency to process her feelings and emotions very slowly and so we are just praying for her that she will be able to process all that she is going through and not stuff her feelings and emotions. Please pray for health and strength both physically and emotionally as she walks this road before her.

I’m feeling extremely emotional and try though I might I can’t seem to stop crying. Physically, the baby was moving a ton last night and so he seems quite happy. I am needing to be at peace and to be able to be confident that none of this is a surprise to God. Pray for perfect timing for the delivery of this little one and that all the details would be sorted out smoothly and in His perfect time.

Xandra and Jeremy are both upset and processing what all of this means to them and to their sister and to their family and they are doing so on an 9 and 12 year old level. Please keep them in your prayers as well.

Siah seems blissfully unaware at this point.

We could use prayer for all our family/friends as this is their Grand daughter, niece, cousin, friend and the uncertainty can be stressful.

Health and Peace, Faith and Wisdom! Those are the biggest things that we need right now…….thank you.

11:30am update:

Home from my midwife appt. Things look okay with me and baby. Wheels set in motion to be ready and able to collect cord blood. Geli had to receive another platelet transfusion as her counts needed to be above 50 to do the bone marrow biopsy and they were up to a 40 from the initial count of 9. So she’s received the 2nd transfusion and they are waiting on the numbers to proceed with the biopsy.

Please Pray!

We’ve just received a phone call from our Family Dr.

We took Angelica into the Drs today as she was not getting better within the 24-48 hour window that the antibiotics should have helped with.

He sent her for blood tests and called us about 20 minutes ago saying that we needed to take her into Children’s Hospital right away, TONIGHT, as it looks like she has Leukemia.

Please Pray!

We are upset and don’t really have any answers and in reality don’t really know what questions to even ask.

We’re hoping we’ll find out more tonight.