July 2010 – Page 2 – xangelle.com

Safety Matters

Yesterday (Saturday) was a pretty boring day.

After the chaos of the past month, this is not a bad thing, but it also leave you feeling a little lost, as you try to fill the time and space and “come down” from the stress and attempt to figure out some “new normals”.

That’s a lot of quotation marks, but that’s a little how life feels right now…..punctuated by pauses (………) and “quotation marks”.

Angelica had a bit of a better day emotionally, although she’s had a pretty brutal headache for the past 2 days. On Friday it was her back that was bothering her terribly and now she’s had a brutal, brutal headache. I’m wondering if her back is out and we are going to try to book an appointment with our chiropractor for Monday to see if that will help her. It’s so hard to watch her be in pain and to not know how to help her. Because Tylenol can mask a fever, and basically fever is how her body will manifest an infection, we are not supposed to give her Tylenol and so we called in to Children’s today and they are getting her some Codeine. We’re hoping this will help alleviate the pain, and also help her to enjoy herself a little. Because of the pain, she’s been basically laying down and sleeping. I’m not so upset that she’s catching up on some sleep, but it’s hard to see her so “down” or “low” and I’d love to see her cheerful and enjoying herself again. It’s so hard to watch your children hurt.

We did have one moment yesterday that managed to break the monotony of our day….

Josiah has been climbing the counters recently…well, he’s been doing it for a while, but just recently with Geli and the baby requiring a bit more supervision – he’s managed to actually scale the counters and one day Jon found him up on the very top of the cupboards. Not cool!

Jon found these very nifty locks at Children’s Hospital and bought one to “try” at home. He figured that if it worked, we’d just pick up a few more the next time we were there.

He and Jeremy installed it on Friday evening…..I hate it. It’s a magnet lock. There is a magnetic key and the locking mechanism. You install the locking mechanism into your cupboard and once it’s closed, unless you have the magnetic key, you cannot get inside. We decided to keep the key in the cupboard above the pantry (that has the lock installed in it.) That way it was close enough to get at, but Siah couldn’t get it.

You need to have both hands free to open the lock and then you have to remember to put the key back up in the cupboard where it gets stored.

We had one scare where I thought I had locked the key “inside” the pantry, but after a few moments of panic, we found it over on the counter.

Yesterday though, we really did lock it into the pantry and we did not have one magnet strong enough to open the lock. The key doesn’t feel like it’s a very strong magnet and yet….surprise, surprise IT IS!

We tried EVERY magnet we own and NOTHING worked. Some were almost strong enough and we could hear the lock clicking but nothing was actually strong enough to actually unlock the stupid thing.

Finally Jeremy googled and found out that there is a SUPER STRONG magnet inside a Hard Drive and Jon had an old one of those kicking around……amazingly enough, it worked….

Here you can see the little white key sitting on top of the spaghetti sauce jar!

The locks are currently flicked into the “unlocked” position while we try to figure out what we’re going to do going forward. At the very least, we had some entertainment on our boring Saturday!

The Waves Roll In

Today is the day after the Bone Marrow Biopsy and the Lumbar Puncture and today is a bit of a rough day emotionally for Angelica.

She’s mostly held it together for the past 28 days, but today the waves of emotion have crashed over top of her and she is finding today difficult. Lots of tears, lots of feeling, lots of emotion…..just too much of everything!

On top of the emotional side of things, she is in quite a bit of pain from the Bone Marrow Biopsy, AND….she managed to tweak her back in the car on the way home yesteday.

Today is a bit of a rough day and that’s putting it lightly.

Unexpected Surprise

On Tuesday, Gelica’s counts were too low.Â She had a fissure and there was only a slim chance that she would come home, even this weekend.Â Yesterday morning, the oncology doctors came in for their usual daily visit and reported that the nurses were not showing any signs of the fissure in her “specimens”, and that her counts were coming up nicely.Â There was a short discussion between various specialists, and they came back in the room to inform us that…

There was no reason for us to stay any longer.Â There was a procedure for this morning, but we could do that as an out-patient. So…

Gelica packed up the room basically by herself as I talked to a few specialists and doctors to make sure we had everything for going home.Â We got our discharge orders, took three trips to the car to load everything in, and then CAME HOME!!!!

We had dinner as a family and hung out as a family. I played with the boys and sung them to sleep. I tucked two sisters into bed and prayed for them.Â Patti sat and nursed Judah while I did one load of dishes.Â It was the most normal of household activities and it was wonderful.Â Patti and I slept in the same bed for the first time in a month.

Gelica and I did have to go back to Children’s today through rush hour traffic and it was worth it.Â We had to go through the outpatient routine for the first time, and it was still worth it.Â Doing this together as a family is WAY WAY WAY WAY WAY WAY WAY better.Â Thank you to everyone that has been praying that the numbers would go in the right direction, and that the fissure would go away.Â That is exactly what happened and a couple days ahead of what we were told, and this is the first time that something has happened ahead of schedule.

Thank you God!!!

Jon

Brutal Honesty

I’ve been really struggling with this whole situation.

The whole “my daughter has been diagnosed with cancer and has been in the hospital for a month and we’ve had a baby and lived apart as a family and…..”the list just continues on and on and on and on…..

I think the biggest thing that I struggle with is believing that God “can” heal Geli but questioning and struggling with believing that He’s going to come through for me this time….for her….for us…our family.

There I said it….yup….just being honest….I’m a real person. I’m not so strong. I don’t have it all together. In fact, I’m not sure I have any of it together. I’m just working on breathing one breath at a time most days…and most times right now even that seems difficult.

I know that God heals. I know that many have been healed miraculously and some have been healed with the help of the medical system and yet in spite all of that, I feel so unsure that it might happen for us.

I think this is “my” journey in all of this…….somewhere between trusting and dealing with massive fear….

I’m struggling to find even a mustard seed amount of faith in all of this.

I had a son. He died. I know that he didn’t have to die. I believe that God could have allowed different circumstances to happen in our lives and yet I know that through it all, He walked with us. He comforted us. He carried us. I don’t believe for one minute that He did that (or this) to us. I believe that we live in a world where bad things happen and that He will love, carry and comfort us through the bad things in life. I also believe that He will help good things to happen out of the bad things that come up in our lives.

I also believe that He has the power to “protect us”……..?

and yet……..I dunno…….

I just don’t understand why we’ve gone through the hard things in our lives and why He’s allowed these things to happen.

(Those stupid why’s again……)

I don’t WANT to have to “deal” or “walk through” these things.

I don’t want to be “strong enough” to overcome these situations and circumstances.

I just want my healthy family back together and for all of this to go away. And….I know it’s not gonna happen.

I think of the “process” and it’s such a long process and it overwhelms me. I’m tired. I’m hurting. I’m scared. I’m stressed.

I’m having horrible dreams where my other children are getting seriously hurt or injured and waking up like that is a brutal, BRUTAL way to wake up, let alone waking up to the reality at hand.

I had a bit of a cry the other night. It was “The Ugly Cry – the light version”….. I was in the hospital room, in the dark…and I was so disappointed that we weren’t coming home and going to be together again and I’d been fighting the tears all day. I didn’t want to scare or bother Geli and so I was laying there sobbing silently into my pillow. I call it “The Ugly Cry – the light version” because with “The Ugly Cry” there is typically a lot of noise, amazing amounts of snot and tears, huge volumes of kleenex or at the very least sleeves and shirt bottoms involved and massively, MASSIVE puffy eyes at the end…..well, I was trying to be silent, had no kleenex, did have the snot and tears and when I woke up at 3:30 the next morning and went to the toilet….the beast in the mirror had the HUGEST PUFFIEST EYES and so……”The Ugly Cry – the light version”.

Apparently it relieved a little bit of the pressure, as the next day when the dr came in to tell me that Geli wouldn’t be going home until after Friday….I was okay. Not good, but okay enough to not fall apart in front of him…..

Listening to him didn’t really help my confusion and frustration as he basically said that Geli has pretty much hit the worse case scenario in every step of this journey so far…

Best case, she should have been home within the first week of being at the hospital…and yet she’s pretty much hit every complication that she could have. He’s concerned that following that track record that she might not have cleared the cancer cells by the biopsy this Thursday and may have to continue on this initial course of treatment for another two weeks….which they couldn’t even continue on with if her counts stay so low…..

It’s just has so far appeared to be a bad to worse case….I don’t want to hear that.

I don’t want to hear that he’s concerned or thinking the worse case scenario in regards to Gelica.

I want the best to happen and yet I’m scared.

I’ve been disappointed and let down in the past and this is where I need help……

I need ones to stand beside me and to speak out the positive and to believe for me and with me when my faith is low. I’m already bashing or knocking myself for having doubts and that just makes me feel worse about everything. I don’t need anyone to tell me how I “should be feeling” or what I “should believe”. Believe me, I know…….I KNOW!

And yet, this is where I’m at today….maybe I’ll be stronger tomorrow, but….things are hard right now for me….I’m not speaking for Jon or Geli or anyone else….just me.

I appreciate all your prayers and faith and belief. I want to see the absolute best for my daughter and my family. I want to believe it with every fiber of my being. I’m trying so hard. I know it “can” happen….I guess I just want assurance that it will happen. I’m just finding all of that to be a bit hard right now…..

And….I’m tired. I’m so SO tired. I don’t know where or how to find the strength that seems to be required of me in this situation. I feel like I’m too close to the end of my rope. I don’t know when things will “get better” or ease up a little and allow us to feel like we can catch our breath. It just feels like too much all at once with no chance to breath. Between Geli and her health and the hospital stay, the baby, being apart from the kids, worrying about the kids, being with the kids, being apart from Jon, being over tired, work……just everything….I feel like I’m drowning and I so desperately need things to stabilize so that we can catch our breath and re-group. I’ve gone beyond running on fumes and yet I see no end in sight…..and…..and…..and I don’t even know what to say or where to go from here or even how to end this……..

It’s just where I’m at right now…..I’m so tired and worn down.

Firsts and Traditions Carried On

It’s been a tradition since April 4th, 1997.

That is the day that Angelica was born and when Jon gave Geli her first bath.

Some wise man talked to Jon about giving the babies their baths as it was a way that “he” could bond with his babies..ya know, seeing as he didn’t have boobs and wasn’t able to bond with them the same way that I could…..

And so, he jumped right in there and he did most, if not all of the baths for our kid when they were babies…..I find the baths to be a bit scarey as the babies are a bit like rubbery wet noodles……

This whole situation has required some give and take on our part and while we’ve been separated as a family for almost month…..some things are too important and can have the extra effort given to make them happen.

And so,getting back to the whole first bath business….

I had to beat the nurses at BC Women’s Hospital back with a stick as they kept offering to get a bath for me to bathe Judah in and I wanted to give Jon the opportunity to give Judah his first bath. (I didn’t really have to beat them off, but they did offer a bath a few times and I very politely declined.)

This last Thursday, on Judah’s 2 week birthday we were at home all together and we whipped out the baby bath and Jon was able to carry on the tradition……HOOOOOORAY!

Judah’s a pretty chilled out little dude and I wondered how he was going to handle his first bath. All of our kids have had different reactions to the bath. Some loving it, some hating it, some screaming the entire time and some just going to sleep in the middle of the bath.

Judah just stayed pretty true to his nature and just laid there all relaxed while Jon bathed him. No screaming, no flailing, no startling, not bothered at all, one bit……

It was a bit of a family affair. I think that if Jeremy had been able to fit that he would have jumped into the bath with the baby. All of our kids are quite the water bugs now and if Judah’s first bath is any indication – he seems like he’ll fit in with the rest of the family quite nicely.

I’m just glad that we were able to carry on this little tradition. It’s not that big of a deal, but sometimes it’s the little things that make a difference. I know that Jon was happy that we were able to make this “first” happen.

A Little Catch Up……with pictures

You might think that caring for a newborn in a hospital shouldn’t be that difficult and well….its not difficult – it’s just challenging.

Either I hold him or I put him down on my cot or Geli holds him, but really I don’t like to let him cry or fuss too much as I don’t want to bother the nurses or any of the other patients on the ward and so the majority of the time…..I’m holding Judah.

Which, to be honest, I’m not too upset about, but it really means that there is almost nothing that I can get done that requires 2 hands…..but I am getting really good at doing mostly everything with one hand…..mostly everything. Somethings just require focus and concentration and we’ll just leave it at that………

About 2 weeks ago, Angelica did something to her left hamstring and it spasm-ed and pulled all tight and totally confused the Dr’s and nurses and physio-therapists……everyone was wondering if it was something related to the chemo meds, but in the long run…we’re thinking muscle spasm as it’s been able to be worked out…..mostly!

The physio-therapist came and suggested some exercises…..this was about as far as she could bend it….

And so as not to hurt it more and so that she wouldn’t torque her body trying to compensate for the hurt leg, they suggested she use crutches for a while….

I will admit that I was a bit worried as she had been kind of dragging the leg like it was dead or like she was the Hunchback of Notre Dame…..but the crutches have been given back and aside from a little bit of tightness which she is working on stretching out….it’s almost as good as new. We are so thankful that wasn’t a big deal.

The nurses here seem to be so amazed at how independent and responsible that Geli is. She is really taking responsibility for her own health in so many ways and gets up and makes her own meals when she is hungry….that’s the one that seems to really amaze people. I just figured that it was normal for a 13 year old girl to know how to cook…..seems normal to me, anyway?!?

She made perogies the other day….her favorite, but because her body is currently in a diabetic state – they are not something she can have very often…which is very sad!

Most of the time when I have to run to the toilet….Geli holds Judah and is typically able to get him to settle down if he’s a bit fussy. She’s an AMAZING big sister….

Last Thursday was the first time that we had all been home together as a family of seven….since our lives changed on June 16th…..it was so nice to all be together, even if only for a few hours.

Headed Home in the Van…Dad had run to Starbucks quickly!

Geli really wanted to have a barbeque lunch and asked that we pick up some chips because you can’t have a barbeque without chips…..

Making Lunch

She took her portion and then Siah claimed the rest of the bag as his own and valiantly fought off having to share with the other kids….little brat!!!

Jeremy worked on keeping things real by parking his butt in front of the Computer pretty much the whole time….

I don’t know how we missed out on Xani, but she was there….I promise!

and Nana got in some sweet baby cuddles….It was a pretty hot day….hence the naked baby!

The time flew by WAY TOO FAST and we hd to head back into the hospital. It was so nice to “BE” together in the comfort of our own home…..and hopefully we’ll be back together again very soon!

And now, my littlest baby is starting to fuss and I must go and get him….

Hospital Time

We’ve learned through several encounters with the medical system that projected dates and times are not to be taken all that seriously. It’s not that there is anything wrong with the medical system, it’s just that each person’s reaction to medication, treatment, environment, etc is all different. Add to that the unpredictable nature of how many emergency cases come in during a day that supersede something that you were expecting and we have what we know as “Hospital time”. (for instance, being taken off of your IV line at 2:00pm, might mean 1:30 or 5:00pm and you just have to work around that.)

We understand all the things that go into making the reality the way that it is, but on the 16th of June, we started a journey that has turned our family upside down, and then on the 24th of June, we added to that family a new precious little boy. Both of these events in and of themselves requires a certain amount of readjusting, but put them together and then throw in “Hospital Time”… “Expect to be here 7 days… Make that 10 days”… “we’ll keep you one more night to observe”… “you got a fever, you’re going to have to stay 3 more days so we can check it”… “Its an infection and you will have to be here for a total of 10 to 14 days”… “we have to keep you the full 14 days and your counting is 1 day ahead”… and that brings us to today. (Oh and throw in a 15th wedding anniversary, xandra’s birthday, and fathers day that never really got celebrated)

In 24 days we have not been together through things that we would normally really lean on each other for. Patti and I are a great team and we have learned to be the right kind of support to each other, and we have been forced to do this separated for the whole ordeal so far. If they had told us at the beginning that we might be here for a month, that would have been hard to hear, but we would have been able to plan around that. This process has really been taxing on us.

PLEASE PRAY:
Gelica finishes her 14 days of antibiotics tomorrow am, and if everything else was ok, should could come home. BUT… It seems that she has developed an fissure in her colon (an expected complication of intense chemotherapy), and it could get infected. Also her white blood cell count is microscopically low.

Please pray that the small fissure will be completely healed and that her white blood cell count will rise. If they don’t then we wait day-to-day until she can come.

Pray that Patti and I and our family would be all brought together right now. We really really really miss being together and it is very emotionally challenging.

Thanks for being such a wonderful community and for all of your support, meals, kind comments… thanks to the ladies that came and disinfected almost every surface of our house. Most of all, we know that we are not alone.

Jon

Trying to Hold It Together

We had one of the Residents who has been assigned to Geli’s case come in and talk to us this morning.

It seems that her blood counts are currently too low to allow for her to go home, but there is the possibility that they could raise enough by the weekend……BUT……she then announced that the Infectious Disease People like to see 2 weeks of negative counts before they will release a patient and in Gel’s case I guess they were testing for 2 different things and on the 27th had one neg and one pos and on the 29th both were negative for any infection…this would push our release date from Sunday to Tuesday.

I’m not gonna lie….I’ve been fighting tears ever since they said that. I don’t want to cry and upset or bother Geli as she’s not really said anything yet, but I just want to go home so badly. I’m so upset. I was concerned about this and now feel a bit like, “what’s gonna change as of Tuesday and keep us in here for another few days”….its so stupid.

I’m struggling today.

Really, Really struggling!

Updates…..

So we talked with Angelica’s Dr yesterday afternoon and he shared with us the reports from Geli’s bone marrow biopsy on Friday.

Apparently, her bone marrow initially was up closer to 97% leukemia cells and has now dropped to 17%. There are some cases where they see the leukemia cells gone within two weeks, but Geli hasn’t responded quite as quickly as that. They are hoping that by day 28 that there will be no more leukemia cells…..

This is our next big prayer request….that Geli’s body would be completely rid of the leukemia cells when they do the next bone marrow biopsy on Friday July 16th.

Because they know that there were still 17% of the cells still there…..they are not going to do a biopsy this Friday but will wait until the last treatment day of this 28 day Induction period.

We have also found out what’s happening regarding the infection that managed to foil our plans for a swift get away from the hospital….

There is no more infection that they can find in Geli’s body BUT……..because they have started a 14 day regimen of antibiotics…they must finish the treatment. So, at this point we are scheduled to leave this upcoming Sunday afternoon……

We are in the countdown….YEEEEEHHHHAAAAWWW!

Angelica is doing well, and aside from the antibiotics – there is no reason for her to stay here. This is GREAT news, but at the same time sucks because we are stuck here until Sunday, and home just sounds so so SO nice.

Its wonderful to see that as the leukemia cells are being killed off, that her body is trying desperately hard to build itself back up. Her blood counts are all still quite low, but her body is trying so hard to rebuild and restore. We are designed and created so amazingly.

Another thing to be praying for…..that Geli doesn’t pick any other bug up from the hospital and that we stay on track to be able to come home on Sunday.

Big Thanks for the package from New Zealand

Thanks again for all your support, love and prayers.

We are in awe of you all!

Like Ships Passing in the Night….

Jon went home today to spend a little time with the kids and like ships passing in the night……Judah and I took over at the hospital.

It’s nice to see Geli, and nice to be able to sit (see previous post where I birthed an almost 10lb baby) and not be stressing about the 3 highly active kids at home…..or on the flip side to be stressing about my family taking care of my 3 highly active kids. But, I really REALLY miss Jon. I can’t wait to be able to see him and spend some time with him….talking, loving, just being….but it my be a little bit longer before that really happens. And…..such is life!

I ran into someone on Saturday at Superstore and shared a bit about our story. I got to the part where I mentioned that my eldest daughter was just diagnosed with Leukemia….and to be honest, there is a part of saying that, that just seems so dream like….its like I’m watching or hearing someone else talking about their life….There is this feeling that this can’t possibly be MY life…..my daughter’s life…..my family’s life…..that I’m talking about. It still seems a bit surreal.

And yet, it’s WAY TOO REAL….

We’ve shared some pictures, and talked about some of the better times, and about how Geli is doing so well (and she really is) about how we have peace knowing that this will work out, and about how we feel really very positive about this whole situation, and yet there is this other side to this whole situation…..No one really wants to talk about the negative stuff, but I am going to mention it so that if you pray…you know how to pray….

There are times, when Angelica is sick…..That’s hard. The chemo meds make her feel quite nauseous and when you are feeling that sick…..then nothing feels good. It’s the worst right after she receives the chemo….She gets the chemo on Fridays and then feels crappy right through to Sunday or Monday. It makes life very, very miserable.

The bone marrow biopsy hurts….and even though Geli is given meds to sedate her, it ends up feeling like she’s got a giant bruise on the back of her hip. This makes laying or sitting in bed hurt or ache a bit. Again, not fun!

There is a spot of irritation on the back of her throat, and while we are so thankful that Geli doesn’t appear to have massive sores from her mouth down through her digestive system, this little irritation (that they are keeping a close eye on) bugs her just enough that she wants to clear her throat and/or eat something to distract from the tickle feeling. it also makes her feel like she wants to gag….and that sucks!

Her left leg has a cramp behind the knee that extends up into the back of her thigh and they can’t seem to figure out why it’s doing this. It seems to have a numb spot in it and they’ve ruled out that it might be neurological….but don’t have any concrete reason as to why it’s done this….and so she is on crutches because they don’t want her torquing her body like she was, trying to compensate for her leg.

One of her chemo meds is a steriod and it is wreaking havoc with her sugar levels and they have been CRAZY high. Basically, the steriod has put her in a diabetic state. She doesn’t have diabetes, but her body is not able to produce enough insulin to compensate for what the steriod is messing with and so she is on Insulin and has to inject herself 4 times a day. We seem to have finally been able to get the levels under control….just barely. Today was the first day that 3 out of 4 readings were within the acceptable range…..just barely within acceptable, but still within….up unti today they’ve all been almost double what they should have been.

Also, we should be getting the report from the bone marrow biopsy that they did on Friday…..the previous two biopsy’s showed that 86% of her bone marrow was filled with leukemia cells and with the second biopsy it had dropped to 57%. We are praying for an even better report to come tomorrow…..

And, we are also requesting prayer that Angelica and everyone in our family….both immediate and extended would be and remain healthy.

We’d also love that the infection that Geli had to be completely wiped out of her body asap so that we can all go home together……that would be such a HUGE blessing……

She’s been in the hospital now for 19 days….and although the staff here at Children’s Hospital is amazing and we can’t complain about our stay….it would be so nice to have our family reunited once again and all under one roof.

I’d also like to take a quick moment to say thank you to everyone who has co-ordinated with my sister Michelle regarding meals for our family. The meals have been amazing. There hasn’t been one yet that wasn’t delicious and such a huge HUGE blessing. I’m so thankful to all stepped in and helped us out in this way. It’s so amazing to me to know that my kids and family are able to eat well and that I don’t have to be stressing about them eating out or eating unhealthily.

Thank you to every single one who has brought a meal……I am so grateful. I feel so very loved, and supported and blessed. It means a lot to me that you all would work within our dietary needs and requests and still help us out.

Thank You!