Happy Birthday Josiah

Today, Josiah turns 4. We are so proud of our little man and all that he adds to our family. Josiah, or Siah as most people call him, is very very very kind and loving and joyful. He is also younger than Jeremy by almost 7 years and wouldn’t stand a chance of being treated fairly, except he can very most definitely assert himself.

Josiah came into our world as a miracle. We had lost four consecutive pregnancies, and had basically decided that it wasn’t going to happen. The timing was all off, we shouldn’t have been able to get pregnant right then, but it happened. Patti’s brother, Chris, had his accident not long after and that consumed most of the pregnancy (and explains why his name is Josiah Christopher Culley). And then Josiah was born.

He has had a personality all his own since the day he arrived. He stole my heart right from the beginning. He has the ability to lighten the mood in the room, (or to do the complete opposite). He loves small fiddly things that he calls his “doo-dads” and says the most adorable things like “Gramma, you are my present”. He calls his favorite people with the word “my”… “My Brynn and my Chris are getting married and I’m their bear boy (ring bearer)”. Josiah is an amazing son, and Siah, I love you more. (He tells me that he loves me, and I say I love him more, and he says I love you the most, and then says “I win!” really fast, and it always makes me laugh).

We are fairly practical and don’t do much to celebrate a first or second birthday. Those parties are nice, but the kids don’t remember them and are mostly overwhelmed at why life got so weird for one day. But come age three, its party time…. Except in Siah’s case, we basically skipped his party last year, as Angelica’s treatment was overwhelming, and so this brings us to today.

Siah Looking at Daddy
My favorite photo of Siah - I am in his eyes

This summer is a bit of a cave for us… I mean that in the sense that it feels like a tornado went through our house last year and the violent winds, picked up and threw around our emotions, our energy, our direction, our fears, our life and left the house just a month ago. The cancer treatment has switched to something far more manageable, but just like a tornado coming and leaving, life isn’t just ready to get going right away. You have to repair the damage. I use the term cave, because the storm has moved on, but normal is unlivable and so we are temporarily living as simply as we can while we repair emotionally, spiritually, physically, and in every other way. We will live in “normal” again, but we need the summer to be able to.

Siah Today
Bear Boy

With that said, as of Monday, there was no party planned. As of today, we are having a party. If it is the only thing that gets accomplished today, then it will be a great day.

Josiah is sooooo excited. Angelica has already given him a present, and he has fully clued in to what is coming. He is telling everyone that he is getting a “ball that turns into a bird” for his birthday, and it took some doing to figure out what that was, but he is indeed getting some of those.

~
Jon

Tuesday Morning Update

Well, we are still here. Angelica’s counts have been coming up VERY slowly. The good folks at BC Children’s want to make sure that when they send Angelica home, she won’t end up getting sick and having to come right back… They want her immune system to be strong enough.

Its hard though, because Angelica is not sick. She is completely healthy. The concern is not about her current health, but her immune system strength. It feels so frustrating to be sitting in the BC Children’s Hotel and just hanging out, knowing that Patti could really use a lot of help at home, and not being able to go home and help.

Alexandra turns 13 in two days and has a big party scheduled for tomorrow. We should all be at home today and helping to plan the party, but instead we are waiting to hear from the doctors to find out if they are going to “risk” sending her home.

So please pray that we get to go home, that Patti doesn’t stress too much about the party, and that Alexandra’s day turns out fantastic tomorrow.

Jon

Friday Night Update From BCCH

Its Friday night here at BCCH and I thought I would update everyone on how things are going here.


Playing Settlers of Catan. We've each won one game.


Angelica’s cultures remained negative through the 48 hour mark. This is really good, because it means that we don’t have to stay here for another 14 days. Her temperature has remained normal for almost 48 hours, and so by tomorrow morning, that hurdle to leaving here will have passed.

On the negative side, Gelica’s WBC (white blood count) remains extremely low, and that needs to come way up before we can go home. Finally here CRP (C Reactive Protein), which indicates inflammation in the body is slightly elevated from yesterday, and that needs to trend down (This is an odd indicator, because any inflammation in the body will raise the CRP including bacterial infection, viral infection, sore gums, zits… A really high CRP is definitely a bad infection, but slightly elevated could be anything, so they just need to see that its heading down and not up.)


Walking helps to raise the White Blood Count


At this point, we are healthy and feeling fine, but can’t go home till the WBC comes up and the portion of that that indicates the immune system fighting cells needs to be above a certain level (right now the level is “sample not enough to even bother testing”).

This is the part that really bothers me. It seems that when we come in here, it doesn’t seem to carry on business-as-usual at home. Something has gone wrong at home each time we’ve been in here it seems. Now Patti is dealing with illness and kids that can’t come in and visit and everything while we are here, and I’m not able to help her, because if I find someone to come in here and be with Angelica, I can’t go home and pick up whatever Judah has and bring it back here and risk a setback with Angelica. (well I haven’t been able to… we have a plan for tomorrow that includes me decontaminating in a hospital shower before I come back to Gelica’s room)

We are tired. We function better when we are together. Please pray for a really good WBC and a lower CRP.

Thanks, Jon

Happy Anniversary… sort of…

On June 16th, 2010, we received a call from our family Doctor that started the most difficult year our family has ever had to deal with. We spent that night in the Emergency Room at BC Children’s Hospital getting asked a million question and getting poked and prodded and at about 1:00am on June 17th an Oncology Resident came into our room and stated that initial blood screen results indicated that Angelica was fighting Leukemia. We were admitted to the hospital, tried to get a few hours of sleep and…

On June 17th, 2010, after a bone marrow biopsy, the diagnosis was confirmed as Acute Lymphoblastic Leukemia – B Cell (with a few other specific gene type annotations). This became Day 0 and a whirlwind of activity began that changed the course of our lives.



June 17, 2010
June 17, 2010

Tomorrow is June 17th, 2011. One year since all this began and Angelica is still in active treatment. Her counts are very low, so we have an appointment tomorrow to get some blood transfusions. It will take all day in at BC Children’s, and we would like to celebrate.

We are not looking to celebrate a year of leukemia treatment… that is just morbid. We do want to celebrate a year of life, a year of triumph and a year of community coming together. As her counts are so low, and she is not really allowed to be around groups of people, we can’t go and throw a big BBQ in the back yard, but we can celebrate in other ways. I would like to ask you to send in a comment at the bottom of this post or e-mail (to: patti@xangelle.com) and share “something” with Angelica. You may have a moment in this journey that really sticks out to you. You may have a way that this journey has impacted your life. You may just be able to say, “I am still standing with you”. But please take a moment to share something. I would like to be able to share your encouraging thoughts and comments with her all during the day tomorrow at the hospital.

Also, please have a look at the shirts that Angelica is selling (button on the right) and buy one or pass the link along to friends and family. And if you are not interested in using the paypal shopping cart, or wish to pay in cash, please just contact us and we will set it up. We will be placing our first order with the shirt printer on Monday.

Jon

Oh Man….

well, life just keeps on flying by and I keep thinking I should post something and then, I have no energy to do so….

In bullet points:

– Geli started Chemo on Monday
– She got chemo shots into her thighs on Tuesday
– She went back to school on Wednesday (hopefully for a good portion of the next month)
– Jeremy is LOVING the newest Robot Camp
– Jeremy will do ANYTHING for a Lego mini fig (He cleaned the kitchen spotless is less than 15 mins and that is basically a Christmas Miracle)
– Xandra caught up on ALL her homework (because I bought the latest Maximum Ride Series Book and wouldn’t let her read it until everything was up to date)
– Geli is ALMOST caught up on her homework but she was really, REALLY behind.
– Geli is having a hard time adjusting to a “normal schedule” (She’s finding it hard to get to sleep at night and as a result is overly tired in the morning making mornings a bit tougher than they should be)
– I saw the psychologist at BCCH yesterday and cried too much (now I’m just trying to process everything and trying to figure out what I’m going to do moving forward)
– We are contemplating our living arrangements and trying to figure out is there is a better room allocation that would work for us.
– Jon’s scheduled appointment to give blood is tomorrow morning.
Megamind comes out on DVD today and we are planning to watch it tonight as a family.
– Baby turned 8 months old yesterday and his cousins came to play and I have a bazillion photos to plow through today.
– I love my sisters. Am thinking of them lots today. They are AMAZING!
– I am having too many “I should be doing…..” thoughts and it’s wrecking my life….I need to think through and just “DO” and not get so caught up in what I should be doing. It’s harder to do than it might seem.
– About the previously mentioned room allocation….would you consider turning the basement into the “master bedroom”? Why or why not? Any thought?
-And with that I’m out….I’ve got a mountain (5 large loads) of laundry that I need to fold. Ick!

A Day In The Life…

We’re in our last week of being in the hospital for this cycle of antibiotics, so I thought I would share with you some of the good times and some of the bad times this trip so far.

Good Times:

Here and There
Patti and I have both had our BlackBerries die this year and it happens to be a contract renewal year, so we opted to move up to the iPhones. I did it because I am a Mac geek and Patti did it because of the 5 MegaPixel camera (shes all about the photos).

Patti decided to start sending me Hipstamatic photos of everything going on around the house, and asked if I would do the same, so we traded a lot of photos. It was fun and helped us feel a little bit closer together.  Here are some of my favorites:

Patti and Judah at rest
Patti and Judah at rest

Xandra ready for Red Day at school
Xandra ready for Red Day at school

Gelica Making a Silly Face
Gelica Making a Silly Face

Siah in a bath
Siah in a bath... what a face.

Cooking
Gelica doesn’t really like the hospital food. Its a lot better than any hospital food you would get at an adult hospital, but still, it isn’t home cooking. When we found out that we were staying for 2 weeks, we set to work to “suggest” that they give us a room on the ward with an actual kitchen, borrowed a mini-fridge, made a menu plan and sent mom a shopping list.  The end result was a nightly parade of nurses coming to see where the smell of heaven was coming from.  So far we have had, among other things: roast chicken with steamed veggies, gravy, and mashed potatoes, quesadillas with seasoned chicken and sauteed veggies, home-style spaghetti… I think we are finally having crepes with fresh blueberries tomorrow am.

Cooking our own food, helps to pass the time, gives us exercise going to get the groceries, gives us better nutrition and it has flavor (which the hospital food doesn’t)

Geli Cooking
Geli Cooking

Cousins
In the absence of Patti and Alexandra and Jeremy and Siah and Judah, Aunty Michelle and Aunty Debbie and the cousins came in to make sure we had visitors.  Its always nice to be with family, and missing our own family made their visits even sweeter.

Aunty Chelle and the kids
Aunty Chelle and the kids

Aunty Debbie and Jack
Aunty Debbie and Jack

Gifts and Surprises
I know that people are praying for our family and there are a lot of people that have done so much over this almost 8 months so far. But it never ceases to amaze me when we receive cards, or balloons, or gift baskets from unexpected places. It is such a huge reminder of how surrounded and covered we are.

Gift Basket

Bad times:

Separated
As you can read in my other post, I like to be with my family and we function well together. Being apart just really sucks! I hate sitting here, feeling somewhat bored and hearing about Patti having a bad day and not being able to do anything about it.

Skyping
Skyping

Consoling over the phone
It was a shock to my kids when they heard that we needed to head into the hospital right away. It was more of a shock when they heard that we needed to stay and get further treatment. It was more of a shock when they found out that we were here until the 18th.

Add to that, that they were going to come in and visit on the first weekend… but someone was sick, so they would come in on the Wednesday… but someone else was sick, so they would come in on the Friday… but someone was still sick, so Saturday, or Sunday for sure… but now someone else was sick… so maybe we could just send Xan in for a sleepover on the Monday… but someone was sick.

Each one of these changes in plans has been an emotional event for Xandra and each one compounded on the others. I have had many conversations with my daughter now, where I talk to her on the phone and let her cry.  I don’t like that…. at all.  She is a precious girl and REALLY loves her family and wants us all to be together; she draws life from it. Having us apart leaves her gasping for air. Definitely bad times.

Nausea, Nighttime Vitals and Over Analysis
Coming into the hospital means IVs and medicine. It means that Gelica was sick, is about to get chemo (which normally means she is about to feel sick), or is going to have to at least smell the hospital food (I think there is some kind of conditioned response to the food cart from when she was really sick in here before, cause it doesnt small that bad, but she dry heaves every time it comes close). I don’t like watching my angel have to deal with nausea… its too much and it just ain’t fun.

Another thing that we are guaranteed during each visit is vitals about every 4 hours. that means temperature, blood pressure, etc. at midnight and 4:00 am.  Add to that a bunch of machinery that clicks and beeps and has bright lights… its never really a restful sleep in  here, so we might be bored and have time on our hands, but we are still living with that over-tired feeling. (I won’t complain too loudly cause I think I’ve had about 100 times that amount of sleep that Patti had.)

Over Analysis is when you are constantly being checked, everything goes under the microscope and everything is a potential problem, or requires a conversation with a nurse, or could be a set-back to recovery. At home we wouldn’t have known that her temperature fluctuated by more than a degree during the day, and that would have saved us the conversations about whether there was a secondary infection and, and, and… its exhausting.

Reality Checks
On this ward, it is somewhat easy to focus on our own road ahead. Its not an easy road, but we will all be together, healthy and happy in the end. When you run into other parents here, some are on a similar road and so you compare stories.  Some have children with incurable cancer, or severe complications, or you find out that a kid that you met a couple months ago has died. This is a reminder of what we fight and what we are beating.

This week a teenage boy was brought in that has been in and out of the hospital for the last few months with undiagnosed illness. They have thrown every test imaginable at this kid and they have no idea.  He went home a few days after we got here, but then had to come back.  He is currently in a coma on life support.  I got to pray with and encourage the mother.  But these “reality checks” are hard and humbling.

We are thankful for how far we have come, but this is a day in the life of a children’s hospital.

A Heavy Burden

Hi, this is Jon…. I am sitting beside Angelica tonight as she sleeps in her hospital room. She is still “neutropenic” which means that she basically doesn’t have an immune system, and she is getting antibiotics every 6 hours, but she is basically healthy and not doing any chemo at the moment. She tested positive for a bacterial infection last Wednesday and went immediately on antibiotics. She had one day of feeling sickish, and then all better…. except we have to keep the antibiotics going until Friday the 18th (one more week). Its boring and there are lots of vitals checks and hospitalish things that break up any routine, but its boring.

It seems like the other side of the world, Patti is ‘hopefully’ sleeping with the other four kids and it is anything but boring.

Today, Patti called on the phone and cried. The kind of cry that there are no words for… you just hold them and be silent. I think that it is important to know that Patti is one of the strongest women that I know. She is determined, sometimes stubborn and she can bare a lot, but I think that she is at breaking point. I’ll sum up what is going on at home while I am not there, but I am sure that I am not anywhere close to doing it justice.

Everyone has been sick. Patti describes it as a plague that has hit our house. Xandra, Jeremy, Siah and Judah have all had a run-in with some sort of flu virus. This means that they can not come visit and I cannot sneak home to help. We are separated by a barrier that represents keeping Angelica safe until her immune system recovers. Most of the kids have gotten better, but Judah is still not completely clear.

Emotionally, Xandra and Jeremy got thrown when we left. It seemed like life was getting to a normal rhythm after the summer and fall of hospital stays and sickness and coming to grips with the battle of cancer. We were always tired, but life seemed like it almost settled a little. That was until we had to make an unexpected return. The two older kids came completely apart. I was brought to a new realization of how fragile things were, of how fragile they were. There were lots of tears, lots of things forgotten, and no real way to deal with it… dad and Gelica had to go again and the uncertainty for them returned. This has also had an impact on how quickly they respond to requests, which means Patti has to do more to keep them moving in the right direction.

Jeremy was diagnosed officially with a Learning Difference (used to be called learning disability), and the general consensus at that meeting was the he may fall within the definition of Aspergers. This requires a screen with a pediatrician and today was the day for that appointment. This has been something that I have normally taken care of, so Patti had to steal herself from everything else and get up to speed on what to say to the doctor, and take Jeremy to that meeting, which I had given her the wrong time for, so she was late and was scolded by the receptionist… tears flowed… the meeting did happen.

Josiah is a precious 3 year old, and he needs attention. Patti has realized that she hasn’t played with him or coloured with him a lot and realized a few weeks ago that he doesn’t even know how to hold a pencil. Although this might seem trivial in the face of everything else going on, to a mom, there is some guilt that important things are being neglected. Nana Karen (Patti’s mom) has been a real help with Siah… but there is added stress.

To top it all off today, Patti had an appointment with our family doctor this morning to look at her arm. Because Judah is such a big baby, carrying him is causing damage and a lot of pain (the kind of pain that keeps you awake at night) to Patti’s arm. Judah has been hit with the same bug as the older kids, and so we asked if the doc could see him too, which he agreed to.

When the doc walked in the room, he immediately asked if there is a family history of asthma, and indicated that he believes at first glance that Judah may have asthma….. On top of all the food interactions that we have found, and the digestive issues, and cancer, and ADHD, and Aspergers, and emotional instability and lack of sleep,and Judah teething, and Judah waking every 45 minutes or so at night, and family separation, Patti was given a prescription for some steroids for Judah’s lungs that she had to go and pick up.

This is another brick added to the load, even if it turns out to be something else there will be days of thinking and stressing and learning… more things to carry.

As she sat outside the pharmacy, she called. She called and she cried. She cried and then she carried on. She ordered the meds, then picked up Jeremy, then went to the pediatrician, then she went in on time and was told that she was late, then she cried, then she made it through the rest of the appointment with a plan to go forward, then she went back to the pharmacy and picked up the meds, then she drove home and said hi to Josiah and left him for the night with Nana Karen, then she finally made it home to be with Xandra and finally she had some time to talk again about Angelica and her treatment and the infection and the next steps for her.

Patti is amazing and the mother of 5 amazing children, each with a special need for attention and it seems all need that attention right now… for good reason, but compiled, it makes for a heavy load. Patti is carrying it all, but just barely.

If you are able to take a moment to pray for her, she needs:
– sleep
– relief from pain in her shoulder
– healing from whatever is bothering Judah and his breathing
– healing and health for everyone in the family so we can visit each other
– Angelica’s ‘Neutrophil’ count to come up so she is not so prone to infection
– Jeremy’s Asperger screen to be prioritized high and for this process to not take too long
– Alexandra to feel emotional stability, and for the right tracks to open up for her to deal with all these feelings
– and for Josiah to not feel sidelined in our family.

Thanks,
Jon

Here and There (continued)

Well, I managed to update once yesterday and then it was time for the kids to come home from school and things just went downhill from there.

I forgot to give Jeremy his medicine yesterday and I can’t fathom why his teacher didn’t have him call home. If his behaviour after school was consistent with his behaviour during the day…..all I can say is, “WOW!”

2:59pm Xandra came home from school. My dad dropped her off but Jeremy stayed behind for “Robotics Camp”. Judah was SO excited to see her. He is always so glad to see the kids when they come home.

2:59pm

3:03pm We took this picture to send to Jon, just for Xandra to say, “I love you, Dad!”

3:03pm

3:45pm I find it so hard to believe that we generate THIS MUCH GARBAGE…..I sweep on average, 2-3 times a day and always manage to sweep up a decent mess. Man! Makes we feel like we’re pigs or something……

3:45pm

3:47pm Xandra worked on her homework! She is trying to catch up on a bunch of stuff that she fell behind on over Christmas and in January. She has one more project to hand in and then she’s done…..and then we’ll all breathe a sigh of relief. I’m sick of ragging on her to do her homework!

3:47pm

4:08pm I left Xandra and the computer to babysit and ran up to the school to pick Jeremy up from Robot Camp…..Josiah has watched more movies in the past 7 months than he has in his entire life. At this point, I’m just trying to survive….

4:08pm

4:12pm I had exactly 2 minutes of complete silence before I went in to pick up Jeremy!

4:12pm

4:16pm My Sweet Boy – He LOVES the Robotics Camp and we are so glad that he has found a hobby that he excels at.

4:16pm

4:24pm I managed to throw through a couple of loads of laundry today. Didn’t get them put away, but washed, dried and folded is at least 3/4 of the way through the process…

4:24pm

4:27pm On the other side of the world……here is the wall that is directly across from Geli’s bed…It’s all of us who can’t be with her….cheering her on, if only in picture! You’re never alone, Geli! Never alone!

4:27pm

4:28pm An amazing guy we know dropped off this mini fridge so that Jon and Geli could put decent food in it. The main fridge in the kitchen is always crowded and overflowing and so this is a HUGE blessing! Thanks, Reg! You Rock!

4:28pm

4:48pm Jon sent this picture through of Geli’s room all decorated for Valentines Day! I believe that she and her cousins made these???? Pretty, eh?

4:48pm

5:14pm What is it with 5 o’clock, anyway??? This was the start of many, MANY meltdowns in our family last night.

5:14pm

5:18pm Meanwhile, Jon and geli decided to go for a walk. They went to the Safeway just down the block from BC Children’s Hospital and also to the Dollar Store where they found this sweet pink hat with flames and the name “Angel” on it. They also picked up some socks! You never seen to have enough of something when you are at the hospital…sometimes its underwear, sometimes socks or shirts….something always gets missed in the packing. Unfortunately, we live too far away to just pop over to drop something off and usually they have to determine whether they can wait until we come in next or just go ahead and pick something up.

5:18pm

5:31pm We had soup for dinner, AGAIN! I’m trying to figure out how I can convince the kids to have it one more night. Maybe we’ll do cereal to shake things up a little. We’re living large over here, I tell ya….LIVING LARGE!

5:31pm

5:48pm While we finished up dinner, Jon and Geli walked “home” in the beautiful Vancouver dusk.

5:48pm

6:05pm We had some ice cream for dessert. These are little gluten free Oatmeal cookies with Chocolate Coconut Ice Cream in the middle for a delicious Ice Cream Sandwich!

6:05pm

6:15pm And I’m counting down the minutes until I can put the kids to bed. Don’t want it to be too early because then they get up too early and so I need something to waste some time…..

6:15pm

6:43pm A bath usually takes up a good chunk of time and it’s hard to be miserable when you’re in the bath.

6:43pm

6:44pm Siah’s faces are priceless!

6:44pm

6:56pm Jon and Geli made spaghetti dinner and said it was delicious…they even had seconds!

6:56pm

At this point, I was trying to get boys into bed and things were a little intense. By 8 o’clock, Siah was asleep, Jeremy had woken up Judah, Judah was crying, Jeremy was crying and then I started crying. Between Judah feeling sick with this plague that has swept through our family and cutting teeth, I’ve had less then 4 hours of sleep a night for the last week and those 4 hours……have been in less than 1 hour chunks. Apparently, I can sort of hold myself together for a week with next to no sleep and then…….and then I cannot hold myself together any more.

The house was a complete mess, the cleaners were coming the next day and nothing was picked up for them, the baby was still awake, Jeremy was crying himself to sleep and I was crying and messaging with Jon on my phone.

8:13pm It was a pretty sad moment. I sat on the edge of my bed and rocked and rocked and rocked this little one while messaging with Jon and my momma.

8:13pm

8:27pm And then he slept and then I crawled into bed and began what was to be another LOOOOOOONNGGGG night!

8:27pm

I have an appointment tomorrow morning with our family doctor to get Judah checked out. Xandra, Josiah, and my Momma are starting to do better after a week of whatever this plague is and I’m pretty sure that Judah will be okay as well, but he is wheezing quite a bit and while that’s probably just because his airways are so much smaller, I want to have him checked out before the weekend.

Visits in the Night & a Request

Well, Geli’s been feeling a little lower than usual, but we just chocked up it to the fact that she was at the end of a very brutal and intense chemotherapy treatment. We were (and are) looking forward to moving on from this stage and starting the next (every day down is one day closer to end, right?).

Geli

not quite ready for the picture…still rubbing her eyes

When she got a transfusion on Tuesday, she felt a bit warm when the nurse de-accessed her and so they took her temperature. She rang in at a 37.5 which is a whole degree higher than her average of 36.5 degrees but they don’t worry until it is over 38 degrees so they sent her home. She barfed on the way home on the side of the highway….fun times there. Her temp was still up a bit when they got home, but by bedtime it was down to 36.9 degrees and so she went to bed and had the best sleep she’s had in a while.

She felt ok yesterday but just not very hungry and her temps were well within normal range when we did take them; but at dinner time she felt hungry but was nervous that she might throw up if she did eat and she also she was complaining of being freezing cold.

Geli 2

being goofy for the picture

We took her temperature and it was 38.3 degrees. Seeing as her white blood count is almost non-existent, that is a scary number and so we had to take it half an hour later and then if it was not below 38 degrees – a quick trip into BC Children’s was necessary.

Half an hour later, it was up to 38.4 and so they packed up for a 3 day stay and quickly headed in.

Because her counts are so low, BC Children’s had a room (in the ER) ready for her when she showed up and she was ushered straight past all the other sick children in the ER and straight into a room, mask and gowns and all. It’s pretty serious.

They drew some blood for a culture and gave her a dose of antibiotics and they relaxed in their room until the hospital could find a bed for her. Apparently, the hospital is quite busy with a huge number of flu cases. The winter and beginning of the year was quite quiet and now business is booming…..unfortunately!

They got a room (on the cardiac floor as oncology was full and overflowing) around midnight and tried to get some sleep. Geli slept pretty well, but there were NO COTS to be found in the hospital and so Jon had to sleep on a fold out chair.

This is a nasty little piece of work, but it’s all that’s available. Not fun! It’s just about 6 feet long which is a little short for Jon, not to mention the uncomfortable bump in the middle where it folds out. So, while Geli was able to get some sleep…..Jon wasn’t. Not cool!

Bed

not cool…….

Geli’s feeling pretty good this morning, but her temp is still up and is very possible that it’s one of 2 things….either this is a neutropenic fever or a virus. The other option is a bacterial infection, but we’re really hoping that’s not the case.

I have a request for you all to consider.

Have you ever given blood? Have you thought about donating blood?

Now would be a REALLY great time to do so…..

The blood banks are low and when Geli needed blood on Tuesday it took a while for her to get some as the blood banks are low and needing to do some juggling to be able to accommodate the need.

If you’ve ever given blood or have thought about giving blood, now would be a great time to do so. If you haven’t thought about it, give it some thought. In Canada you can call 1-888-2-DONATE and in the States I believe you can call 1-800-RED-CROSS. I’m not just asking this because of Angelica, but for all the people out there who need help. Shortages are never cool especially when we can do something to make a difference.

Geli 3

This morning….looking cute

I’m calling today to book my next appointment because Judah is over 6 months old now and I’m allowed to give.

Could you think about helping?

I know that not everyone can give and that’s ok. I’m not interested in pressuring anyone, this is just a request.

Thank you!

I’ll post more updates on Geli as I know.

ps. Our kids were quite upset last night about Jon and Geli going into the hospital last night. It was a bit unexpected for them and a bit of a shock. If you are thinking about them, you could pray for them. Both Xani and Jeremy were up until after 11pm stressing and worrying and on top of everything else, Josiah is fighting some sort of cold or something. (It’s possible that’s whats affected Geli, but who knows… he only started feeling off yesterday) Thanks for all your love and support!

Just Holding On

If you’re thinking about us and able to pray for something specific…..

Jon and I tired!

We are feeling the effects of the last 7 months of stress and we’re exhausted!

I’m not feeling depressed and/or sad, just unbelievable tired and really worn down. In some ways we are looking forward, excitedly, to moving on to the final maintenance stage. There are 7 stages of this Leukemia Treatment. We’ve completed 3 and are 1 week away from completing the 4th stage. There are 2 more “active” or “intensive” stages and then we enter the maintenance stage which will last until the end of September 2012. But basically, Angelica should be finished the end of stage 6 somewhere around the end of May/beginning of June. It’s getting closer. We can see it. We can see that there is light at the end of this tunnel. We are excited about this. We are looking forward to what amazing adventures this summer will bring for our family after a year of intensive chemotherapy. Looking forward, we are so excited.

And yet, physically, we are exhausted!

Our bodies are so tired. We have been going so fast, so hard, for so long and we are finding that the pace and stress are taking their toll.

I’m finding that mentally, I’m not as sharp and “on the ball” as I was and I totally believe that it’s the fatigue affecting me. It’s affecting my ability to plan and organize and remember and keep on top of things. With 7 people in our family, chemotherapy, schedules, doctor’s appointments, school events and homework, counseling appointments, family organization, etc…..I’m finding that things that would have been a snap for me to do, co-ordinate and remember…..well, I’m dropping the balls on lot of things and this only adds to the chaos. In the long run, this ends up placing more demands on our time and energy and that’s not cool. Physically, I’m in constant pain. I’ve hurt my arm and shoulder carrying our sweet (but very heavy) baby while still trying to accomplish everything that needs to be accomplished. The constant pain is wearing and yet…..things still need to get done. I’m trying to walk the line between actually “damaging” my arm and waiting and hoping that things ease up over here.

Jon and I are lonely for and missing each other. Our “time together” and “relationship” are another thing that has received a blow from this whole situation. We are doing okay. Don’t get me wrong. Our marriage is not “on the rocks”, we are just missing each other terribly. I would say that instead of “growing” closer together right now, we are just “holding” and sometimes……just holding steady is okay.

We know that we have the rest of our lives to make up for this time, but that doesn’t change the fact that we are missing each other right now. One of the hard things about right now, is that when we do have the rare opportunity to “be away from it all” and to just “be together”….the thought of organizing and planning an evening requires more effort than just keeping on, keeping on. Often, its more difficult to have to arrange someone to watch the kids and to try to figure out where we can park our tired selves for a few hours….and at this point, we are so tired that we can hardly form coherent sentences, let alone carry on relationship building conversation and so we end up frustrated and still tired.

I keep telling myself that this is only a season. I know this. I know that this time will pass and we will not always be in this position, but that doesn’t change how tired I feel “right now“….or how difficult all of this is.

This is a difficult time and we are trying desperately to just hold on.

So, if you’re thinking about us and able to pray for something specific…..

We’re tired and need to be able to hold on for just a little bit longer.

Thank you!