Health – Page 13 – xangelle.com

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.

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.

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.

hair Our 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.

geli I 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

Hurry Up and Wait…..

Well, yesterday was an interesting and busy day, and it could be considered another good day.

First thing in the morning, we got news that Geli would be moving from the 3 Floor Oncology Ward down to the 2nd Floor Oncology Ward. We were told that we’d probably be moving around noon. Then someone came down and said that they’d be back in 10-15 minutes to come and move us. So we rushed around and packed up everything and waited….and waited…..and waited…..and waited………and then finally…..just before noon, someone showed up to transport Geli down a floor. This is what we consider “hospital time” you get to “hurry up…………and wait!” Fun Times!

We did get moved down stairs and are all set up in her new room. It’s nice and big and although not really big enough to fit Geli’s hospital bed and 2 cots comfortably….even with the 3 beds and various other pieces of furniture and medical equipment….it’s WAY bigger than her previous room, AND….we are all together. That is very nice…..except for when one of us can’t sleep and someone else just happens to be snoring……Oh the life of roommates, eh?

Geli’s Doctor and the Nurse Coordinator in charge of her case stopped by yesterday and talked about how well Geli is responding to the treatment. They even mentioned the possibility of Geli going home earlier than originally anticipated but after we all talked about co-ordinating the birth of the baby and collecting the cord blood and when Geli needed to be around for her treatments….they decided to stick with the original plan and have her outta here on the Friday or Saturday.

We are going to be having a meeting with Geli’s Dr. and the Nurse Coordinator and Xandra and Jeremy today at 1pm. Xani and Jeremy are finding all of this difficult and I think the biggest problem is that they don’t know enough information. Xandra is having a hard time sleeping and eating and Jeremy had a melt down last night on the way home. I’m hoping that after this meeting today that they will both feel a bit more comfortable. I think that Jon is going to take the two kids out for a few hours and do something special with them after our meeting and I hope that helps both of them to calm down a bit. We just all need to hold it together for a few more days and then we’ll all be re-united back home and working on a “new normal”.

We did end up having a few visitors yesterday which was so nice….it helps to break up the day a bit. One thing that we’d like to mention and also ask for prayer about……some of Angelica’s counts are very low and have/can compromise her immune system. If you are feeling sick or have been around people who are sick or are sick, we are asking that you wait to visit until you are feeling better. It’s important that Geli not get sick as she doesn’t currently have the fighting power to combat illness. But, this is something that we’d love prayer for that she’d remain healthy and that her counts would come up and that her body would do what it’s supposed to to be able to fight off infection and sickness. Thanks so much!

And then Nana and Papa came and brought dinner and Xani, Jeremy and Siah. We ate dinner out on the patio. Thanks Suseh and Catherine……the Spaghetti Sauce was delicious.

Angelica was quite tired yesterday and was really looking forward to getting to bed early, but it didn’t work out quite like we had hoped. Sometimes you just have to work around the hospital schedules and staff and finally we were all tucked in bed, with the lights out and all the evening vitals taken by 10pm. We had a good night, even if it was interrupted a bit, and woke up this morning after 8am.

Geli’s platelets were low and because of the Intra-muscular injections that she’s receiving today they wanted to bring her platelets up a bit so she got a bag of platelets given to her…..

She is a little nervous to get two shots (one in each thigh, but at the same time) and so if you could be praying for her. I think that not knowing if it’s going to hurt or what exactly to expect is actually WAY WORSE than what will happen when she gets the actual shots, but sometimes the unknown sucks! So that is another thing to be praying about.

I feel like a broken record saying that we appreciate you all and your support, care, love and prayers but I don’t know how else to say it and it’s so true…..Geli has mentioned it more than once….I think it all the time….and others have mentioned it too. Knowing that we’re not alone, that we have this huge group surrounding us makes all of this a bit easier. Thanks! It seems so inadequate, but we mean it from the bottom of our hearts.

Update – New Room

We’ve been moved to a new room where they can fit in both parents. Amenities also include a rooftop view of mossy gravel, private bathroom, DVD Player, Flatscreen TV, full closet, and… a whiteboard for personal messages and notes. Oh, and there’s a really nice rocking Lay-Z-Boy recliner.

The new room: Unit 2B, Room 6 (second floor)

United Together – Day 4 Summary

It was a Sunday and normally on Sunday’s we are up and moving at the crack of dawn or depending on the time of the year….even before then. But yesterday, we slept in.

It didn’t help that we stayed up too late the night before watching a movie; but, it was a nice evening for Gelica, Jon and I.

We finally did get up and moving and while Geli ate some breakfast we watched another movie. Sometimes you just gotta do something to pass the time. And then at other times….you blink and you’ve lost the past 4 hours and it felt like 15 minutes.

Here is a picture of Angelica’s Room.

It’s tiny and the cot (for me to sleep on) doesn’t help with the squishy feeling). What you can’t see from this position is that there is a sink directly to the left straight ahead of my cot and a TV/DVD player hung up on the wall above the sink.

Nana Karen brought Xandra and Siah in for Father’s Day and it was nice to see them. Siah’s been aware of the change of routine and not having Mommy, Daddy or Geli around. He was very happy to see Geli today.

Angelica was allowed to be unhooked from her IV pole for 2 hours today and actually has a standing order for 2 hours a day unhooked….WooHoo! We decided to get off our ward and head on out exploring.

Well, We made it to the Lobby of the Hospital where we found the gift shop and Siah found a tiny toy station……. So we waited for him for a bit…..

It was SOOOOOO Exciting….NOT!

But, that is life with a little brother…..they like to play and explore and RUN REALLY FAST!!!!! Even in Hospital Hallway’s when Mommy and Daddy are yelling as quietly as possible for him to SLOW DOWN!!!!!

We made it over to the Starbucks and along the travels we managed to scratch Angelica’s left foot and run over the two smallest toes on her right foot. Seeing as her platelets were so low….that scored us a free bag of platelets once we made it back to the ward.

But, before our 2 hours of free, untethered time was up we made it down to the cafeteria for some fries and a Cheeseburger…..On our way back up to the room, we met up with Aunty Sherry. She popped by for a visit before she had to be at work at the hospital down the road….

After Aunty Sherri left Mommy and Daddy watched Siah in the playroom and Gelica and Xandra stayed in the room and played on the computer…..

And Colored…….

Geli looks so pretty doesn’t she?

Later in the Afternoon, Nana Cully came by with Geli’s Grade 7 Grad Dress. They are working on the last minute fittings…..it’s pretty cute isn’t it? Geli’s pretty excited.

She rested for about an hour before the time of the day that she had been looking forward to all day long…………Her school friends came to visit…but I think I’ll post about that adventure separately….

We’re all doing well. I’m feeling huge and although I’m okay with our little man staying inside a it longer….I’m also aware that every day we pass means that he gets a little bit bigger and if I’m being totally honest….I’m a little concerned about popping out a 10 pound baby. But……ya gotta do what ya gotta do, right?

We’re up and at ’em this morning (Monday morning) and we’ve (Me and Geli) already brushed our teeth and eaten some cereal. Fruit Loops for Geli and I had a bowl of Frosted Flakes – definitely the breakfast of champions…I might add some strawberries just to round it all out health wise, eh?

Jon stayed over night at the Easter Seals house which is about 3 blocks away. He was finding the teeny, tiny scrawny, short couch in the playroom to be a bit uncomfortable. Hopefully, he got a god sleep last night….it’s just 9am here and we haven’t heard from him yet.

Alright, gotta ditch the jammies and possibly put on some make up…..don’t wanna scare the residents away….

Thanks so much for praying for us. Geli is not feeling sick to her stomach or having any pain. So please continue to pray that her body responds to the Chemo by killing the Leukemia Cells and that there would be no negative side effects to go along with it. We believe that God can work miracles….and we believe that we are seeing those miracles every day. Thank you so much.

Also, you could pray for Jon and I that we would get good rest, be at peace always, and have wisdom and grace in dealing with every facet of this situation. And for the other kids and our family and friends that are helping us out that everyone would also be at peace and that everything would work together and that no one would feel tired or stressed or worn out or nervous or any of those other things that a situation like this could possibly carry with it….

Geli loves reading the comments from you all. It’s so nice to hear who’s praying for us and to hear how Geli’s Story has spread around around the world and is uniting so many people together in faith and hope…….

We love you all.

Father’s Day

Today 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………….

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)

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……

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

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.

Snuggles with Jack can make anyone feel better.

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

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….

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

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

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.

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!

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.

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