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

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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!

Chris and Xani Giggling

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.

Dinner on the Patio

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.

Gelica’s “10 Lists”

I talked to Angelica this morning about this whole situation and we decided to pick 10 things that Sucked about this and then to find 10 things that were Positives. Life is all about good and bad……Positives and Negatives….you can’t really choose to only have the good things in life (although wouldn’t that be nice) but you do get to choose how you are going to respond in your situation. And, it’s okay to be upset and also you don’t need to feel guilty if you’re feeling happy or okay about things….just take it all one day, one moment at a time.

So, here are Gelica’s 2 “10 Lists”………..

10 Cruddy Things

1. VAD hurts at first
2. Sleeping is uncomfortable because of pain from the VAD
3. Have to get up a million times in the night to go pee
4. Feeling so super sick and tired before I found out about the Leukemia
5. The selection of Hospital food is limited and not always delicious
6. Not looking forward to the Chemotherapy injection into both of my thigh muscles today
7. Have to drag my IV pole everywhere
8. Having to wear a hospital gown for the first 2 days sucked.
9. Don’t get to go too far away during the summer cause I have to be close to the hospital for treatments
10. She couldn’t come up with a sufficiently crappy 10th thing….we’ll think about it and get back to you all……..

10 Positive Things

1. Feeling better now that I’ve started Chemo
2. Get to wear my pyjamas all day
3. People come to visit me (people I wouldn’t normally get to see)
4. The Dr.’s and Nurses are really nice here at Children’s Hospital
5. Getting to watch a ton of new movies
6. Should be able to go home at the end of this week
7. Get to have both Mommy and Daddy with me
8. Having the VAD so I don’t have to get poked a million times
9. Finished school for the year a bit early
10. Knowing just how many people around the world are caring for and praying for me

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.

Geli'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.

Cuddles from a little brother

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.

Headed 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…..

The Lobby is so Exciting

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!!!!!

Running Fast

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….

Visit with Aunty Sherry

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…..

Computer Time

And Colored…….

Coloring

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.

Geli's Dress

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.