Cancer Sucks – Page 3

Catching My Breath.

Things have been insane around here recently. I have had no time for myself as you may have noticed by the silence over here.

It was not something that I was intentional about but I have felt like my life was on speed.

working on schoolwork

I…..we, have not been in a good place and for the first time since….well, since before the new year and probably WAY before then even…..I feel like I can…..well, I feel like I can almost breathe. I have these moments where I can see that I should be breathing and yet, I feel like I am still holding my breath and I have to remind myself to let go of the breath that I am holding so that I can take another and another and another.

It has felt like things have been going down hill for a long time, but at the same time, I was trying so SO hard to carry on. Since the New Year and the whole BONE CRAP…..it has felt like things are going faster and faster down hill and that I could no longer even attempt to stand strong against it all. I have felt like I was being crushed under the weight of everything and at the same time…..I couldn’t be crushed because there was too much that still needed to be done; and so, wounded and broken I carried on.

we like to do school, too

At the end of last year we applied for the Disability Tax Credit for Jeremy regarding ADHD. In April we received a bit of money and made the decision to use ALL of it to get some help.

We interviewed a bunch of people and none of them really seemed “just right”. As we continued through the hiring process, I got discouraged. I started to think that maybe I was looking for something that I wasn’t going to find or that maybe I was expecting or hoping for too much. As a last resort, we contacted the church we are attending and asked the Young Adults Pastor if he knew of anyone who wanted or needed a job as a Mother’s Helper. He suggested someone and it turns out that there were two sisters that came for an interview and I couldn’t have asked for a more perfect duo. They are sharing the job and starting last Monday, I have help from 8:30am to 4:30pm and the two women are INCREDIBLE.

Who needs skateboards to play at the skateboard park?

They are sweet and responsible and loving and the best part……..my boys LOVE them. I am SO THANKFUL. This couldn’t have come at a better time because we have 5 of us in counseling right now and between all the appointments that we have been going to….I think I would be completely WIPED!!!!! if I were trying to do this all on my own, and with the two little boys always in tow.

I’m hoping to be able to have a little bit more “me” time. It would be so nice to not feel like I was ALWAYS behind on things, or to not feel like I was never able to catch up or stay on top of anything.

New pink glasses

I feel like I’m trying to catch up right now. I don’t even know if it’s possible and there’s a part of me that wants to just ignore everything in the past and just start fresh moving forward….and in some ways I’m doing that…but it still feels like I’m overwhelmed with everything that I’m carrying. Oh Well, I guess that’s just more for me to hash out in counseling. Fun!

my baby is getting so big

There is So much that I’ve wanted to share. But I’ve just not had the time nor the energy. Hopefully, I’ll have a bit more of both as the days and weeks carry on. I just want to thank each and everyone of you who has prayed for and encouraged and reached out to me and to us. I have had NO energy to “be a friend” to anyone at this point and this journey has felt like such a long and lonely journey and each time someone reaches out, it feels like a hug. Each time someone sends an e-mail, I feel encouraged or picked up. Each time, We get a message letting us know that you’re praying or thinking of us…it gives us a little bit more energy so we can pick ourselves up and carry on. I….WE are so grateful and thankful for everyone who is walking this journey along side us. Please know that although I still feel like I am in Survival Mode and barely scraping by, that I am SO incredibly thankful for each one of you.

Siah’s sand dude!

5 Cycles Left

Angelica has 5 cycles of chemo left until she is FINISHED.

September 30th is the day that she stops taking chemo. It seems SO FAR AWAY and yet…..we only have 5 more cycles of monthly chemo to go until that day comes. It’s pretty exciting to think that when the new school year starts, she will have less than a month of chemo left.

Today we headed in for a monthly chemo appointment. We also needed to meet with the Physiotherapist as well as get an X-ray of her left shoulder. Initially, we were going to be getting an ALL DAY infusion on a drug that would help with the pain that she is feeling in her knees, but we changed our minds on that particualr drug after meeting with the Orthopedic Surgeon last Thursday.

Let me back up…..basically, since the Dr’s Diagnosed bone death back in January we haven’t had a really GOOD appointment since then. We’ve had a number of appointments but all of them have been very emotional or full of bad or depressing news. We have tried to stay strong and positive, but with each appointment seeming worse and worse, it’s been so SO tough.

We had a BIG misunderstanding with the Rheumatologist back in the beginning of April and then another BIG meeting with our Oncologist in the middle of April and while it was better….things were still confusing and sounded so……so……..so dark and depressing and negative. It was suggested that we start one drug to help with the pain and we thought about it and planned to go ahead. The Dr sent us a bunch of articles to read. Some of the info was good and some was not so encouraging. Isn’t that how it going with most meds??? Anyhow, We were supposed to start that drug today. It was possible that it might give her bone and joint pain and well as a fever and flu like symptoms like aches, fever, chills and nausea….sounds fun, eh? And, it would have taken all day for it to run…..awesome!!!! Not!

We met with the Orthopedic Surgeon last Thursday and it was a GREAT meeting. He believes that Geli’s case is a mild case of bone death and that she is still in the healing process. He believes that she will get stronger and stronger and that the pain should lessen. He also mentioned that as she gets stronger, that she should also have more mobility as well. These were also very positive things. He mentioned that it is possible that she may not need joint replacements until she was 40 years old. While that is earlier than an average age for joint replacement, it is WAY BETTER than being in so much pain and discomfort that she would need it in the next two years…..He also suggested against the medicine that we were considering because among other things, it can make the bones brittle and more suceptable to fractures. As well, if there are negative side effects, those can possbly stick around for a long time…..a life time even and well….that would not really be cool. Would it?

Of course, this is all a natural, medical opinion and we are still praying for and hoping for miracles. Just going to the specialist felt good. We walked away from the appointment feeling very hopeful. And that is SUCH A GOOD THING!!!!

We go back to see him in the middle of June.

Today we had our regular monthly appointment and other than it being two straight hours of running around, it was a FABULOUS day and a GREAT appointment at the clinic. There was no traffic to start and we made it in with enough time that we weren’t rushing in from the parking lot. We went into the clinic, and Geli had to mask up as she’s had a nasty virus that’s been making it’s rounds through the kids. We were sent to the back of the clinic which is the long term appointments, but we stopped to talk with our nurse because we were not staying for the extra long drug. While they tried to sort out the confusion, they sent us down to Radiology to get the x-ray that the orthopedic surgeon had ordered for Geli’s shoulder. Geli changed into one of those cute little gowns that tie up in the back and we were to be up next when our nurse came and told us that physio was waiting for us. So we left Radiology and headed down to the PT department. They also felt that both her elbow that seems to be locked and her shoulder that is difficult to move are both from muscle tightness as opposed to being unable to move because of problems with the bones. This is a very good thing. Geli was given a few exercises to work on and we have an appointment that co-insides with her next chemo appointment.

I am hoping that with one month of focused effort that she will start to see some amazing and encouraging results in her physical body. We will be doing a lot of physio over this month and so if you think of it, you could pray that she will stay encouraged to keep on going and that she will see some results sooner rather than later.

After we met with the Physiotherapist, we headed back to the oncology clinic to get her blood drawn so that we could get her counts, as well as get her Chemo drug for this month. After that, we headed BACK DOWN to Radiology to finally get her shoulder x-ray-ed. The results from that will go to the Orthopedic Surgeon and then we will see him in the middle of June. When we finished with the x-ray, we headed BACK to Oncology to meet with Geli’s Oncologist.

It was a completely uneventful appointment. All of Geli’s stats look good. Her white counts are elevated a bit, but that could easily be explained by the virus that she is fighting off. She checked Geli out, increased one of her oral chemo drugs by just a tiny bit and sent us on our way.

All of that happened within 2 hours…….it was a FABULOUS day!

We have just recently made a few changes within our family and house and I’m hoping that those changes will have a more positive effect on all of us. I’ll hopefully be back tomorrow with an update about what’s going on with us……

Miscommunication and misunderstanding……

Yesterday was another tough day.

We had our monthly chemo appointment in at Children’s on Monday and we got talking with our nurse about the what we “thought” was in the wings for Geli as far as knee replacements and surgery and time lines and the more we talked, the more it seemed like something just wasn’t right…..or that something was missing.

Long story short….what we thought was in the works for Geli regarding her knees and surgery and stuff….well, the reality is way no where close to what we had thought we understood.

There is a whole bunch of information that we don’t know and we are going in this coming up Wednesday for a meeting with our oncologist, our nurse clinician Jon, I and Geli.

It’s so frustrating. Geli has been in pain everyday all the time for a long time now. It’s wearing on her. It’s horrible for us to see her in pain.

I fell apart yesterday. Couldn’t stop crying. Don’t really have the energy to get into it all right now, but the bottom line…..something has to change.

We are praying like never before….for a miracle, for answers, for something.

Could you pray for us? We are beyond exhausted. Every blow feels like a HUGE hit and we are finding it harder and harder to cope with the blows and ever more difficult to recover from them.

I’d love to be able to explain a bit more, but I just don’t have it in me.

Pray for Geli
Pray for Jon and I
Pray for the kids

Thanks.

Moments to Breathe

A couple of weekends ago, we were gifted with the opportunity to stay in a cabin down at Birch Bay.

We weren’t sure what to expect, but the thought of “just getting away” from everything was huge and so we threw 1 change of clothes, a set of pyjamas and our toiletries into bags. We threw some bedding into the van, grabbed our passports and headed over the line.

all packed in the van

We left our house later than we would have liked, and as a result arrived later than we would have liked. We also had to stop and pick up a few groceries once we hit the States. I am SO thankful that Jon had planned up a rough menu for us as my head was just not screwed on right and it took everything I had to just get us ready and even when he came home from work……I still wasn’t “ready” for us to go.

I find that aspect of all of this to be one of the more frustrating things. I just can’t keep things straight in my mind right now. I’m too exhausted. I’m missing things and other thigns are slipping in between the cracks and in a lot of ways, it ends up costing our family. the fact that I can’t organize things like I used to is costing us….it’s costs us time and money and energy and adds stress. I HATE that I feel like I’m adding to the overall burden. But, I’ve reached my max….almost 2 years in and I’ve realized that i very definitely do have a “limit”. I cannot do it all. That alone is humbling and depressing and so very VERY frustrating. It’s not that I thought I COULD do it all, but I know that I can handle a lot…..and knowing that I’ve reached my limit……*big sigh*….it’s tough!

Anyone who comes has a big family, knows that “vacation” has a very loose interpretation of the word. It’s more like a change of pace or change of scenery for the parents. There is still much to co-ordinate, and meals to make and clean up from. Meds to dispense. Kids to put to bed….and hopefully, if we are very blessed….a small bit of rest to be had.

We arrived at the cabin and unloaded everything. The kids were SO excited to be there. They immediately set off exploring the cabin and the property; and we were so warmly greeted by the neighbors. It was so nice.

We made assigned the kids rooms and made up beds and dispersed bags to the appropriate rooms and finally got the kids in their pyjamas and settled and then Jon and I headed to sleep. In spite of the busy-ness of arriving…..the place felt peaceful. I could hear the waves crashing and could smell the wet sea air. It’s a good thing that Jon and I went to sleep as soon ans we could because the boys were up bright and early.

I think Jeremy was the first up….he was the most excited out of all of us to be there. He was alomst quivering with excitement.

The kids occupied themselves while Jon and I prepared breakfast.

Judah found these Duplo blocks and spent a ton of time building “legos” with them. It was so cute to see him play like this. We actually pulled out our own Duplo blocks once we got home and he has spent many happy hours playing with the box of Duplo.

After breakfast, we headed on down to the beach…..

It was still pretty cold at 9am in the morning, but the boys were determined to be outside, at the water’s edge. Judah was thrilled to be getting dirty. He’s a true boy.

The boys walked up and down the beach front….

I think that we must have re-located half the rocks on the beach out a few yards…

It was so nice to see everyone relaxing and smiling and just forgetting about everything for a while.

We skipped rocks and found crabs and watched excitedly and with great anticipation for the tide to go out.

Siah got a bit cocky and what do you don’t see, is the next picture where he is running for the shore with his boots full of freezing cold ocean water. He waded out far enough and a wave came in strong enough that it washed right over the edge of his gumboots.

Judah was So excited to be out splashing int he water too. He was initially cautious and then his excitement and curiosity go the better of him and in the end, he ended up falling into the water despite our repeated warnings and got soaked…..

Geli found a path out to a sand bank and loved the feel of the cool sand in between her toes. My kids have always been water bugs. I think it must be in their genes….they are so attracted to the water and seem to thrive in any water environment.

By this point, we were getting chilly, between the cold water and the cold wind…BRRRRR! SO we headed back inside to get a bit warmed up. We played some games and ate some popcorn and just relaxed.

Jon even got in a short nap…

Here is Geli goofing around with a water bottle. The bottles boasted that they used 50% less plastic and well…it certainly seemed so as the bottles were so flimsy.

After a while we realized that the tide had gone WAY out and had left some amazing looking tidal pools that were just begging to be explored.

The birds were out and the sun was shining and it looked amazing.

It was so incredibly beautiful out there. There were miles and miles of beauty just begging to be photographed.

We found the coolest looking shells and weird shrimp looking things, crabs and other sea creatures, including sand dollars.

Jeremy had noticed a fire pit back up in the yard and was desperate to roast some marshmallows. We headed back up and the kids made a huge mess of themselves.

I don’t know how you get marshmallow spread out over your face from your eyebrows to your chin….it’s a skill, I tell you.

There were SO Many great photo opportunities. If you are interested in checking out my WAY TOO MANY photos….click on this link.

It was an amazing time and I was so grateful for the opportunity to get away. What an absolute blessing. It was exactly what I needed exactly when I needed it. It was a little slice of heaven in our crazy lives.

Thank you! THANK you! THANK YOU!!!! for this incredible opportunity. We are so blessed.

The Ups and Down of Life

I feel so……so……so caught up inside myself.

There is so much going on and I don’t know where or how to unpack it all. I had a phone chat with our social worker from BC Children’s yesterday and kind of fell apart on her.

I’m tired. I want some help for the kids (and myself if I’m being honest) and “the help” (therapy type help) available, is at BC Children’s….an hour away from here. (We have no extended medical to help cover the expenses for other help and so we’d be paying out of pocket for other help, which we may just have to do…..)

There is a sibling support group that is just about to start, but…..it’s on Thursday afternoon’s for an hour and a half FOR THE NEXT 8 WEEKS.

That’s not really very helpful. If we missed traffic (which would be a miracle – we’d be in traffic for at least one way), we would be driving for 2 hours to go to a meeting for 1.5 hours. And I’m not sure what Geli, I, Siah and Judah would do while the older 3 were in the session. Then we’d be leaving at dinner time (and sitting in that lovely traffic I mentioned) all the while hoping that the baby wouldn’t fall asleep in the van so that he wouldn’t be up until midnight. There would be dinner to figure out and homework to work around and well….it’s just more of a problem than a help…..

I am already running below empty and I can’t fathom adding 8 weeks of that stress into our lives….so where does that leave us………?

Not in a great place, that’s for sure.

I know that we need to get beyond “this time” and that things will look different in a year from now and hopefully things will be easier but I am so tired and worn out, I’m not sure what shape I’ll be in, in a year from now. We’ve been looking forward to “this season changing” for what feels like a very long time and it’s all seeming so very surreal and even unattainable at very low times. We have to believe that things are not always going to be this tough. We are not looking forward to the future as a “magical time of amazing-ness” but we are trying to hold onto HOPE with what little strength we have left, but sometimes, even that feels so very difficult to do.

Our social worker asked me what things I could take off my plate so that I wasn’t so overwhelmed and to be honest…..I have no idea. I’m already doing the least amount of housekeeping that I can and still have us be functional. And that right there…..is so tough to deal with. I like a clean, neat and tidy house. I feel like I’m drowning….not even like I’m treading water anymore, but that I’m sinking deeper and deeper under. I have no time or energy to keep on top of all that it takes to keep our family running smoothly and my “coping mechanism” is to “fill another box” with the crap that gets piled up on my counters and then take it down to my bedroom.

It’s definitely not a cool way to deal with things. I think I have 6 boxes downstairs with “crap” that needs to be sorted through. It’s all I can do to stay on top of my laundry and well….besides the fact that I have the worlds smallest laundry room and 7 people’s clothes and towels and linen won’t fit in it…..we just need the clothes to wear. The boys only have about 3 pairs of pants each and depending on how messy they are we could plow through 2 or even all 3 of them in a day. NOT COOL, boys! NOT cool!

Obviously we have to eat and trying to feed a family of 7 economically, while eating a gluten and dairy free diet….well, it’s extremely challenging and sometimes I just wish that we didn’t have to eat.

A significant portion of my time is spent homeschooling Jeremy and breaking up fights and squabbles between the two little boys. A few people have asked me if that’s something that I should off load and just send him back to school. Maybe even a different or new one……to me, this is not even an option. For the first time in his life, Jeremy is EXCELLING in school. He hasn’t gotten a mark that’s been less than an “A” for 2 months now. He feels smarter. He’s ACTUALLY retaining the information that he’s processing. If he doesn’t LOVE school, he at the very least enjoys it, now. As much prep work as it is for me…..and let me tell you, teaching ONE CHILD has a significant amount of prep work and time spent overseeing what he is doing…(I can’t fathom teaching 30+ kids with more than one of them with Learning Differences or other social issues)…..this is something that I believe is CRITICAL right now. I firmly believe with all my heart that Jeremy is learning valuable LIFE SKILLS that will impact him for the rest of his life. To cut this time short, would be devastating, in my opinion. Even moving him to a new school…..he doesn’t “YET” have the skills needed to make a change, and I believe that he would end up in the same position that he was in….behind, feeling stupid and bullied……

So basically, I get up in the morning…….. I sort of teach school. I try to care for my little boys. I attempt to feed and clothe the family. I clean, and it is an extremely loose interpretation of the word, the house and then it’s bedtime…..

For “ME” time….I “try” to work out 3 times a week and while that’s a good thing…I feel like it’s an hour and a half of hellish torture that I enjoy once it’s finished.

Regardless……something has to change, I’m at a breaking point….I’ve been thinking about getting someone in to help out for a few hours a week….maybe twice a week….to help with the little boys and maybe some housework….I dunno….I’m not sure where to find someone, or how exactly to go about it all, but I have been thinking about it….so….that’s a start, right?

Jon and I are missing each other….it’s been so long since we’ve had any time to just “be” together and that’s tough. Even our evenings are crazy. The boys have been particularly needy over the past couple of weeks and haven’t been settling until after 9pm even though we’re starting the bedtime routine at 7:30pm….I dunno if they’ve been feeding off the extra stress……or what the issue is? Whatever it is….it’s not cool!

We did, however, get the chance to get away as a family. Last weekend, we were able to go to a cabin down at Birch Bay for two nights and it was a wonderful time away. It wasn’t so much of a rest….as it was a change. A chance to get away from the house and feeling a need to clean and tidy. The kids played. Nothing “could” or “had” to be done….probably the biggest downfall was that we wanted to pick up a few clothes while we were down there, but again…..shopping (or pretty much doing anything) with 5 kids is…..um…..interesting…..and we didn’t get done what we had hoped and that left some of the family feeling like they were disappointed. We should have just gone down and not hoped to pick up a few things….that would have at least not set us up to fail…..

that’s Jeremy in the bottom left of the picture

I have a TON of pics from our time away and I’ll share some of them in the next post. It really was a beautiful place and right on the beach…….like RIGHT ON the beach. The smell of the air, the sound of the waves, the seagulls crying…….it was amazing. Truly, truly amazing. I love the beach. It really is a “Happy” place for me. We are SO THANKFUL to the family that made it possible for us to get away. It was INCREDIBLE! SO, SO INCREDIBLE!

Through The Valley of the Shadow of Death

Amplified Bible (AMP)
Psalm 23
A Psalm of David.
1THE LORD is my Shepherd [to feed, guide, and shield me], I shall not lack.

2 He makes me lie down in [fresh, tender] green pastures; He leads me beside the still and restful waters.

3 He refreshes and restores my life (my self); He leads me in the paths of righteousness [uprightness and right standing with Him–not for my earning it, but] for His name’s sake.

4 Yes, though I walk through the [deep, sunless] valley of the shadow of death, I will fear or dread no evil, for You are with me; Your rod [to protect] and Your staff [to guide], they comfort me.

5 You prepare a table before me in the presence of my enemies. You anoint my head with oil; my [brimming] cup runs over.

6 Surely or only goodness, mercy, and unfailing love shall follow me all the days of my life, and through the length of my days the house of the Lord [and His presence] shall be my dwelling place.

This passage keeps running over and over inside of me. Different aspects of it hit me at different times of the day and the night.

The Lord is my Shepherd. He will feed, lead and guide all of my and our steps. I will lack for nothing. He provides a place for me to lay down and be at peace and rest. I can feel safe and secure, knowing that He has made a quiet, peaceful place for me to relax when I feel tired or overwhelmed. I can be still knowing that He is in control and caring for me. He refreshes me and restores me when I feel worn down and so tired and so very, very broken. He does lead me into places of uprightness and right standing with Him, because He loves me and Geli and us. Even though we may be walking through a very deep, dark valley and may feel like the shadow of death has touched us with it’s evil and destruction – I WILL FEAR NO EVIL. I will not fear anything because HE IS WITH ME, WITH HER, WITH US….every step of this journey. He will never leave us nor forsake us. He protects us and guides us and in spite of all of our pain, or hurt or confusion or anger – HE COMFORTS US! He provides for us in the middle of all of this garbage. In spite of all we have gone through, in spite of all we are are going through….my life is full of love and joy. Goodness, Mercy and His Incredible Love is with me every moment of every day and I choose to live within His LOVE and PRESENCE all of my life. Nothing shall sway me from this, not life nor death.

Angelica is on the list to get new knees. In all actuality, her shoulder is WAY worse than her knees, but she doesn’t walk on her shoulder. And so, from her standpoint, dealing with the pain in her knees is a higher priority.

I’m very aware of exactly where we are at, and we are taking the steps that are medically necessary to replace her knees, and her shoulder will be shortly behind that. We believe that there is SO MUCH GOOD that the medical profession can offer to help us out.

And in spite of all of that, I am praying for Angelica’s healing.

I would love if if you would stand with me and support her and us with your prayers.

I believe that….. “Where two or more agree concerning anything, it shall be done!” and so I’m asking for two or three….or many, MANY MORE…..to stand with us to declare healing for Angelica.

Looking at the reality……we need a miracle. Aside from the replacements…..that’s the only other possibility. I’ve seen the pictures of her shoulder bones and the left one has collapsed. There is no natural possibility for healing or regrowth outside of a miracle.

And so, I’m asking, praying and believing for a miracle.

I would like to invite you to join with Jon and I and more importantly Angelica as we pray and believe for healing and new bones for Angelica.

I realize that to some of you who don’t believe, this may sound crazy. And maybe, I’ve gone crazy….there has been a whole lot of stress over the past 2 years. But………in my mind, as much as it might be good to have knee replacements instead of pain and eventual immobility for the rest of her life……the best thing would be to have new, healed and restored bones. Until the moment that they cut her open to put new knees and other joints in….I will pray and ask and believe for God to work a miracle in her life and in her body. At this point, we have nothing to lose….

Angelica doesn’t finish treatment for Leukemia for another 6 months. The list for new knees has a 6-9 month waiting list….and so the timing works out well for her to be on the list starting now.

She starts physio and OT on Monday at GF Strong.

For those of you joining us in prayer, here is a list of things to pray about:

1. New, Healed Bones for Angelica. Currently they have said that her knees, shoulders, hips and elbows are showing signs of bone death….but we want everything in her body and mind to be healthy!
2. We are all feeling quite emotionally tired, fragile and broken. So prayer for strength and comfort, peace and joy.
3. Geli is so tired of feeling physically exhausted all the time. She’d like to have energy to be able to enjoy life.
4. Geli is starting physio and we want her to be able to build as much strength in her body as possible.
5. Prayer for sleep….restful, peaceful sleep for everyone in our family.
6. Strength for us all to be able to keep going on in spite of how tired and worn down we are feeling
7. Protection for our family that each and everyone of us would be safe and healthy
8. We have had so many things break on us recently…our microwave, my laptop, our toaster over, our scale, my breast pump, and I know there are more that I’m not remembering, but we’ve had enough…..this all needs to stop. It’s a drain emotionally as well as financially!
9. PEACE!!!!!! in every area of our lives and minds and bodies……for all of us.
10. Employment – Jon’s job is very uncertain right now. He is a contractor and currently working for a GREAT COMPANY, working amazing flexible hours and making enough to support our family. His contact is up as of March 31st and his boss has applied for his contract to be extended but the boss’s boss has not not yet signed off on rolling over the contract. Jon would love to actually get hired on full time at this company, with benefits and a regular salary, but even just a contract renewal would be amazing.
11. Mini-Vacation – Personally, I’d really love to be able to get away as a family. Somewhere not too far away, but where we can relax and just escape! I’m just gonna be specific and say that I’d love to be on a beach somewhere to hear the waves crashing and smell the salt water and feel the wind on my face, but honestly….any where would be nice.

Thank you for all your support. Thank you for your kind words. Thank you for your encouragement. Thank you for your prayers. We need them now, more than ever.

Normal is gone……and we grieve

I lay beside her on the bed tonight, cuddling her…my arms wrapped around her while she sobbed and wailed as if her heart had broken. I held her and whispered quietly, my lips against her shoulder, “It’s okay to cry. Just let it all out.”

The sounds coming from the very core of her….so hurt and wounded and broken and tired…..so very very tired.

She cried until she was spent and then she lay, breathing jerkily, as she tried to settle.

***************************

We went to see the Rheumatologist early this morning. He gave us news that no one wants to hear. Especially not a child……

Double Knee Replacement!

Shoulder Replacement!

Most likely looking at bone death in the hips and the elbow and who knows where else…..

Possibly hip replacement in the future…… who knows about the elbow.

He would need to look at the previous X-rays and we’ll probably need more in the future.

It’s a lot to deal with.

I’m not coping very well. She’s struggling. We are all struggling.

This is tough.

So painful.

She’s looking at knee replacement surgery after treatment ends in 6 months.

She’s already feeling like Grade 8 and Grade 9 have been taken away from her by cancer and now to hear that grade 10 will be taken up with bone and joint issues…..

This just feels like too much.

For all of us.

We are hurting and wounded and broken and in the moment, it feels impossible to think about how we can possibly recover from this.

I try to put as many positive spins on this as I can. To think about those we know who have overcome great obstacles and even faced death and now are thriving, but in the moment……

It’s overwhelming and we cry…..

And we hurt and we wonder how we will carry on and yet…….we must!

We will get through.

Nothing will ever be as it were.

Our old “normal” is gone……never to be found again and we grieve. We grieve hard!

We must find a new normal.

Again.

It’s getting harder and harder to think about creating new normals.

It’s getting harder and harder to try to create new normals.

It’s getting harder and harder.

It’s just really hard!

Tonight is a bad night.

Hopefully, tomorrow is better!

What are you Thankful for?

It’s Monday morning….well, it’s almost noon and I’m sitting on my couch….in the sunshine….in the quiet……well, it would be quiet if Geli wasn’t hacking and couching and sneezing in the back ground. She’s stayed home another day from school. She woke up this morning with some “gastro-intestinal issues” and that’s all we’ll say about that. It’s all just a part of the stupid virus. I can’t wait for it to run it’s course and be gone from our house.

My mom came by this morning and has taken my boys for a walk. It’s nice cause they’ll get back, we’ll feed them lunch and then the baby will go for a nap. That’s some good timing, as far as I’m concerned.

Things are okay this morning. I’d be lying if I said that I bounded out of bed this morning, ready for the day. Certain that today was going to be a good day. It was more like I rolled out of bed ’cause the baby needed a diaper change. And then I folded 3 loads of laundry before even heading upstairs.

We managed to get breakfast made, school started and the house somewhat tidied and so right now things feel peaceful. I know what’s happening for dinner and I will put it in the oven in a few hours. There are no appointments, or places to be or things to pick up and so today is a quiet day.

I’m noticing that right now, my patience is not at the level it normally is. I snapped at Jeremy this morning instead of calmly explaining to him why it’s not a good idea to shout in the hallway when his brother is still sleeping. I don’t like being rude or disrespectful to my kids. I’m trying to teach them to talk respectfully even when they are frustrated or tired or upset and so to model the very behaviour that I’m trying to teach against……frustrating for me. It’s all a lesson, isn’t it? I get to apologize and explain what happened and how it’s not okay. We hug and move on….it’s just life lessons, but it speaks to me of how little I have to give.

I’m not hopeless. I’ve not given up. I’m just tired. Imagine if you had been walking in the desert for a month and you knew that just over that hill in front of you was a town and there was water, food, a bed….rest……and you just had to make it there. You’re exhausted. You don’t want to carry on, but there is no point in lying down and dying now. The end is close. Your dessert experience won’t last forever, but…..you are tired. You don’t feel like you can take another step. All you want to do is to lie down. But if you do….you will end up losing out on everything that you struggled for….that you fought for….all that pain and energy was, then, for nothing.

Sometimes, you just need to sit down and cry. Let all of the pressure off. And then you pick your tired self up and carry on……that’s where I’m at….I’m carrying on.

We all go through things. Have I ever wished that I was not going through this…..OF COURSE! Do I wish that I had a close friend, someone who really understood……honestly, as nice as that would be….NO! Because that would mean that you were going through this and I wouldn’t wish that on anyone. Sure, I’ve looked at you and wondered why “I” am going through this horrible time in my life. And then I remind myself that WE ARE ALL going through things….Life is a constant state of living and dying…of good and bad….of tough times and easy times.

I’m so aware of the tough times right now because there seems to be so many tough things going on in my life and yet, I try to keep aware of the good things in front of me….I have so many good things. I have an amazing husband….who I don’t get to see nearly enough. But isn’t that amazing that after 16+ years that I want to have more time with him and not less. I have 5 amazing kids. I am all so proud of each of them. They work through their own struggles and come out winning, and loving and embracing life. My family is amazing and well,…..I’m alive and breathing.

Alive is pretty good, no?

Today I’m choosing to be thankful….. I’d love to hear what you are thankful for, if you wouldn’t mind sharing?

I’m thankful for Jon and my kids.
I’m thankful for my health.
I’m thankful for my home.
I’m thankful for sunshine.
I’m thankful for my momma.
I’m thankful for this quiet moment.

What are you thankful for?
There are no wrong answers……

seasons change……….

It’s been a while since I last posted.

We’ve been trucking along and then……. I don’t know what happened. This last week was horrible and by Saturday I fell apart.

We slept in until 8:30am (That’s a sleep in ’round these parts) and then I got up and went to my exercise class where I managed to finished the first third of the class and then I started crying. And crying and crying and crying. So much so that the girl in front of me stopped her practice and gave me a box of Kleenex. I managed to sort of pull myself together (or not) and hung out through the rest of the class and then went home. And then spent the rest of the day crying and crying and crying and crying.

It’s all just too much.

I don’t know how else to put it. There is too much. Too much for one person to handle. Too Much Stress. Too much pressure. It’s just too much.

Xani got sick about 2 weeks ago with some killer nasty cold. She made it through the first week hacking and coughing and sneezing and then the two littlest boys picked it up. Saturday night Josiah woke up unable to breathe. That’s scarey, eh? His panicking didn’t help the situation, either. But, what would you expect if you woke up in the middle of the night and couldn’t breathe? He had a fever from Saturday until Wednesday when it finally broke. I figured that we were just dealing with some nasty virus. The Baby started in on the coughing on Sunday and rocked out a fever then too. By Thursday night when his fever was still in the 39-40 degree range, I was starting to get worried. He was so cranky. So whiny. So tired. So upset. Not eating, not drinking and starting to not wet his diapers. I took him to the clinic where the dr diagnosed him with a lower left lung infection and put him on antibiotics.

There was a massive issue at the pharmacy because they didn’t have the antibiotics that the dr had ordered and there was a HUGE run around trying to get a new prescription. It was unreal. The pharmacist dude was unreal and we know them by name – We spend a lot of money at this pharmacy. I’m not sure what the problem was today…maybe he had a fight with his girlfriend before he came to work or something….it was awful……we finally got it sorted out and started Judah on the antibiotics late on Thursday night. He was still feverish on Friday morning, but by late afternoon the fever was starting to come down.

Friday morning I got a call from Geli’s nurse, saying that her counts were really low and that we had to stop chemo and that they’d like her to be taken into our Dr or a clinic or something just to get her chest listened to. She started feeling crappy on Monday and didn’t go to school the whole week either. She had a low grade fever for most of the week. Just before we were taking her to the clinic, we took her temp and she was at a 38.1 – when she is neutropenic (has really low infection fighting counts) we have to take her into the hospital anytime she scores a temperature of 38 degrees or higher. If she has normal counts then we have to take her in, if she has a fever over 38.5. We chocked it up to the smoking hot bath that I had just pulled her out of and carried on down to the clinic. Her lungs sounded clear, but the clinic dr clocked her temperature in at 38.7…….so Jon called the hospital to let them know they were coming in and they came home to pack up.

We were not sure what to expect. Worse case – she’d be admitted for 3 days. Best case, they’d come home that evening but needing to go back for a 24 dose of antibiotics.

They did get to come home. It was viral, but it rocked us. We have been been so battered and beaten over this past year and half that we have no reserves to stay strong about this. I felt like I was in shock that night. Jeremy was crying off and on because they had to go. The babies were sick. Jon and Geli were gone for who knows how long. I just emotionally and mentally shut down. My mom came over and she helped with the boys and took Xani to youth and picked her up while I tried to clean the house so that we could “carry on” on Saturday. But inside I just felt dead about it all. I have to do this. I can’t just not. I have no time to just be. I have no opportunity to get away from this all. For the past 19 months, we have fought and fought and fought and fought and I don’t know how much fight I have left in me.

A friend stopped by to drop off a few groceries that I needed and we were talking for a moment and I shared with her how I feel like I’m in a bad dream or a horror movie. There is just one bad thing after another after another and I can’t see the end to it all. I know this sounds bad. I know this sounds down. I know this doesn’t sound encouraging and that’s how I feel.

I’m so tired. I’m so worn out. I’m exhausted. I don’t know how I will be able to make it through the next 9 months.

I feel like I’m barely existing. It’s a horrible place to be. There are so many things that are hard right now. I am trying to hold onto faith and hope and yet……..honestly……it’s really tough.

And that’s how I came to yesterday…..I spent most of the day crying. I crawled into bed at 6pm finally fell asleep at 8pm. I woke up at 2am, at 3am, at 4am, at 5am, at 6am and then slept until 8:30am…..sleep evades me this past year and a half…..even if the baby sleeps, I wake. There is so much going on. So many things that have gone wrong. So many things that I’m trying to organize and manage and sty on top of……so many other things that I can’t do anything about……

This is a very tough season…..I can’t wait for this season to pass…….it must!

So Angry

I’m so angry right now.

So incredibly angry. It doesn’t help that Jon and I had a sweet argument in the middle of everything. We are both processing and it’s tough. I want to just be mean – I’m so not perfect – but there is no point. I’m not out to hurt him….even if my broken self feels like it might make me feel better, even for a moment.

We got a phone call today that we didn’t want.

Angelica has been diagnosed with Avascular Necrosis or bone death. Part of the long leg bones (Femur and Tibia) closest to the knees have some moderate death in them. We don’t know very much at this point and we won’t know more until we meet with the Orthopedic Surgeon.

Worse Case Scenario – New Knees.

There are other options, but none of them are anywhere as good as NO BONE DEATH. We have about 8 to 9 more cycles of this crap until Maintenance is over and we could see the end in sight and to have this come up….it feels like a HUGE BLOW.

The Dr kept saying that Leukemia is life threatening and knee replacement is not….and its not even a guarantee that she would need knee replacements. I know that obviously in the grand scheme of things…a life threatening disease is WAY worse than something that is treatable and NON-life threatening……..BUT HONESTLY……THIS SUCKS SO BAD!

I just want to scream. THIS IS ENOUGH. NO MORE! PLEASE GOD! PLEASE PROTECT US AND KEEP US SAFE. PROTECT MY DAUGHTER. I’VE HAD ENOUGH. I DON’T WANT TO DEAL WITH ANY MORE CRAP.

I don’t blame God for everything and yet…..truth be told. I’m angry. I’m upset. I don’t understand. I don’t feel very loved right now. And yet that goes against what I believe….I believe that God is a loving God. I don’t believe that He makes this crap happen. I don’t believe that He is testing us or teaching us something. I do believe that we live in an imperfect world with lots of things that go wrong and that there is sin and death and that regardless of what we go through…….He is always with us.

I choose to believe this. I choose to believe that He cares for Angelica even more than I do. I choose to believe that He is a good God. I don’t currently feel it, but I choose to believe it. I have faith that everything will work out for us. I choose to believe that everything will work out for Angelica. I don’t know how, but I do believe it.

But tonight….I’m angry. I’m angry at cancer. I’m angry that this wasn’t caught sooner. I’m angry that my daughter is in pain. I’m angry that Jon and I are so tired. I’m angry that we fought. I’m really angry about a lot of things….

This sucks. I know that I need to process this latest news and yet…I don’t even know how to do that…..

We will be okay. Angelica will be okay.

I choose to believe that even if it’s the last thing I feel……

I’m speaking life to Angelica’s bones. And I’m asking for you to speak life into her bones too….If you pray, pray for a miracle. We could really use one. I’m well aware of our reality and yet….I want a miracle!

Jon and I could also use some prayer. We are tired. SO Tired! So Worn out.

Geli and Xani, if you are reading this…..I’m okay! I promise. I’m upset and as I’ve told you a million times…….it’s okay to be upset. Just like I’ve told you…..feel your feelings, recognize what they are and then let them go……….and carry on “LIVING” your life. It’s okay to process. It’s okay to be upset. It’s okay to melt down and even have a hissy fit. Bad stuff happens sometimes, but we choose to not stay in the middle of the crap. This is just something that we WILL get through. We will continue to breathe and learn and make the best choices and we will choose to live life to the fullest , we will laugh and have fun and most importantly, we will love. I will help to carry you when you are down and you will love me and lift me up when I’m down. We do this because we are family. I’m just having a down moment, but if you see me tomorrow and I look okay…..it’s because I am. I’m not hiding anything. Life is too short and too precious to hide behind the lies of “I’m okay”. I am working though this and I am okay…..and if I have a moment when I’m not….that’s okay too. I’m just human. We all have ups and downs and it’s ALL OKAY! Feel your feelings, good or bad and then lets just live……I love you my precious girls. I am so proud of you both. You are growing up to be amazing young ladies. You each have different challenges to face in this life, but I LOVE how you LOVE and how you LIVE and how we LAUGH and even how we CRY……you girls are going to accomplish amazing things in your lives. I am so confident of that. I LOVE YOU BOTH INCREDIBLY!

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