Category: Gelica

So Much More…

Things have been quiet around this here blog, not because of a lack of things happening, but exactly the opposite…

To make a looooooong story short(er), Angelica’s counts are low….like really REALLY LOW! This is good and bad.

It’s good because the meds are working the way they should, and Geil’s body is responding to the meds and it’s bad because she is at a much greater risk for infection right now.

The infection in her feet is still present and right now it’s bothering her. There is infection in the tissue surrounding the toenails but it’s not in the blood which is a good thing. Her feet are hurting and she does not really have enough “infection fighting cells” to get rid of the infection. This means that we need to go back onto antibiotics to try and back the infection down so that it stays in check.

We’d love prayer that her toenails would grow out quickly and not be ingrown anymore. That the infection in the tissue would be completely gone and that the new antibiotic that she’s on would not affect her stomach. We believe that it was the original antibiotic that caused the massive stomach pain, nausea, vomiting and the subsequent weight loss…..

I’m feeling quite nervous about putting her back onto oral antibiotics but the alternative is hospitalization and no one wants that for her….especially over toes.

We really need the whole issue with the toes to be resolved and the Dr believes it could be 2-3 months before her toenails grow out sufficiently to make this a non factor…..that’s not cool.

Aside from that, we are feeling a bit discouraged and feeling like we’ve been hit one too many times recently. We’ve had to fix our van, our washing machine is showing signs that it’s gonna bite the dust shortly, Jon lost his phone a few weeks ago, and on Sunday morning he put his computer on the roof of the van while he got something else ready, and then somehow managed to drive away with it still on the roof. Our minds have just been too full and overloaded with too many things. It stayed for the ride until the highway and then crashed at a 100 kilometers per hour. Needless to say, it did not survive the crash and he lost a HUGE project he was working on for his Programming Business.

He had some of the stuff on his laptop backed up but not everything and while nothing is irreplaceable….it’s gonna take time and energy, both of which are on short supply at this point. It also makes you feel a bit frustrated and stupid when you make mistakes or cause accidents like this….ones that could have been avoided or that you wouldn’t normally make but because you are trying to juggle so many different things……..

There is just so much more to deal with, to talk about to share, to go through, to do…..there is just so much more, and so we ask for your prayers for us all.

…..and so we carry on….

Well, we took Geli into a BC Biomedical Lab to get her blood work done today. The results from the panel done today determine whether she waits a week to start the second half of this stage of chemo or whether she moves forward as planned.

I’m not really certain which one I’m rooting for more. Am I hoping that the results are great so that she can carry on and hopefully we get to finish this journey sooner rather than later OOOOOOOOOOORRRRRRRRRR……..am I hoping that her counts are just a little low so that she gets an extra week to “recover and rest” before we head back into it all.

Both options have their benefits and yet this all sucks.

Jon woke her up this morning to take her to the lab and she ended up “rushing a bit” and “pushing herself” and that resulted in her barfing up her meds….HER VERY EXPENSIVE MEDS that she just flushed down the toilet this morning. SUCKS! But, she did manage to get the meds into her system eventually and then they headed up to the lab.

Well, we got the phone call with her results and her counts look great. They are almost up to the low end of normal.

And so….we carry on.

I’m a bit concerned that she’s still barfing, and that she still sometimes feels “off” even while on a triple med cocktail. She is slowly eating more and so…and so…..and so we carry on.

This is such a crazy brutal journey. I had no idea what people who had/have cancer go through and I know that every journey is different and that each person responds to treatment differently, but this is brutal. To watch your child go through this process is horrible. I want to make this all go away for her and I can’t. She has to walk through this and we get to walk along side of her and pray for her to have the strength to carry on and then we carry her when she is too weak, but we keep on moving forward. One day this will all be a distant memory……

Calming Down

Well, things have seemed to calmed down a little, and we hope it stays this way.

A little back story….

When we went in to the hospital for a scheduled chemo appointment this past Monday, she was not really eating or drinking and had been barfing for about a week. There was nothing to indicate that anything was really “wrong” and so we went home.

Angelica’s temperatures had been up and down over the past week and she’d been feeling quite off; but they never quite made it up to 38F and never up to the 38.5F instant trip to the hospital….and they would typically climb down over night and we’d carry on the next day.

It’s been horrible to try to force her to drink and eat and we’ve not managed to keep enough drink in her to properly hydrate her and definitely not enough food in her either.

We called into the oncology clinic a few times and finally, on Thursday morning, made an appointment to come in on Friday morning to get hydrated, to check her blood levels and get topped up, if necessary, for the weekend.

She actually had a pretty good day on Thursday…she didn’t barf at all and managed to drink almost all of the required 2 liters of fluid. Then, just before bed, we took her temperature and it was at 38.1F so we waited half an hour and took it again….38F on the dot….so we called in to let them know and as per protocol…..Jon had to take her in.

It took a few minutes to get their bags together and just for fun…we took her temp one last time…it was down to 37.9F. That was a little frustrating because it’s possible that if we’d waited a few more minutes, we wouldn’t have had to drive in, but we had already called and they were expecting us.

Jon took her in and to make a long story short…she was fine – you know, beside the barfing and not drinking.

They sent her home and said that she could keep her 10am appointment on Friday morning.

By the time they got home, it was almost 2am and she’d not had enough food in her tummy and she started barfing…and barfing and barfing….but of course with an empty stomach…well, it was not pretty.

She finally got to sleep but woke up at 7am and it started all over again.

When they got into the clinic on Friday morning, she was still barfing and they finally came up with a cocktail of enough drugs to calm her system down. They pumped a ton of fluid into her, but surprisingly, we’d been able to hydrate her enough that she was not severely dehydrated, as I’d wondered about.

There has been some talk of tube feeding her, but at this point, they are even concerned about that because if she’s vomiting…then she would most likely just vomit that up as well……

Her levels were all good and in the end, they believe that the vomiting is one of two things….either it’s a reaction to one of the chemo drugs or it’s as a result of being on an oral antibiotic for almost a month.

We are hoping that her stomach has just revolted to being on a month of oral antibiotics and that now that they’ve been discontinued, that her stomach will settle down and stop producing massive amounts of acid and that she’ll be able to start eating and drinking without pain or problem….

If it is a reaction to the one chemo drug, that would suck terribly as she is supposed to start that particular drug again on Tuesday.

So, we are seriously praying that it’s the antibiotics and not the chemo drug….

She is starting to eat some and drink some, but we need her to be able to eat and drink normally so that she can be healthy and strong enough to endure this journey.

We have a blood test on Monday to see how she’s doing and depending on the results of that, she is scheduled to start the second half of this stage on Tuesday.

We are believing for a good weekend and some quieter, calmer, healthier moments.

Silence Filled With Thankfulness

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I’m sitting here in the silence of my home. The baby is squirming in his sleep and Angelica is sleeping on the couch across the room from me.

My sister, Michelle, took Xandra camping. My sister, Debbie, took Jeremy camping, and my parents took Siah camping. Yes, they are all camping together. It’s hard being here and not with them…but it is what it is and it’s not forever….again, this is just a season and we will go camping again, hopefully next year!

I should be doing laundry and cleaning the bathrooms and vacuuming the upstairs hall and bedrooms, and cleaning the boys room and tidying the kitchen, but I’m not…..I’m just sitting.

Sometimes, you just have to sit and breathe….and I need to do that right now.

Often when I do slow down long enough to think about all of this, I’m struck by how blessed we have been. I think of how much love we’ve been shown by so many. It’s truly awe inspiring.

I’m so thankful to everyone who has helped us and given to us in any measure. We are so grateful to everyone who has in someway shared this “load” with us. There are times that we feel crushed (but not destroyed) under the weight of all of this and when we shift our focus off of how difficult this all is, it’s easier to see that there are so many standing around with us carrying a piece of this or even propping us up. Every meal, every gift card, every package, every gift, every comment, every prayer, every e-mail or Facebook message, every donation, every little thing no matter how big or how small, has truly impacted us.

You are all so kind, thoughtful and generous. Your love comes from near and far and wraps around us and helps to carry us through….and in the silence of today…..I think about you all and I’m so thankful.

One Move At A Time

Angelica is an AMAZING Monopoly player. If you have any doubts, you should challenge her to a game and unless you have some serious mad skills…..she will whoop your butt. She routinely wins around here and really it shouldn’t even be considered winning as it’s more like “slaughtering” whoever she is playing against.

We’re playing a little too much Monopoly this summer….and I’m not the hugest fan of the game.

She’s been feeling pretty crappy and I’m cautiously optimistic that she’s turned/turning the corner and is slowly feeling better.

Her temperature’s have been just on the border of heading in the wrong direction and that in and of itself is a HUGE stressor on Jon and I.

We end up wondering if it’s the start of an infection or if it’s just a random high-ish temperature or if she’s fighting off something…..the what if’s are brutal.

We have been instructed to take her temperature in the morning when she wakes and in the evening before bed. So we take the evening temperature on Monday night and it reads in at a 37.6F. Her temps are normally around 36.6F and so this is a whole degree up. So we send her to bed, pack some bags (just in case a midnight run is necessary), pick up the house, throw on some laundry and try to tidy up any loose ends that we can, in case she ends up in the hospital.

Just before we go to bed, we re-do the temperature and it’s now up to 37.8F so it appears to be up…now what? which way is it headed, who knows? At this point, the baby wakes up and we’re up for an extra half an hour soothing him back to sleep. We set the alarm clock for 2 hours from now to check her again, to see which way her temps are going and just as we lay down, Josiah comes wandering into our room crying about something. At this point, you gotta just laugh…or cry and well, laughing seems like a good idea, no?

So, we get Siah back to sleep and just as we’re drifting off…..

The ALARM GOES OFF! Yah!

Go and check her temp and it’s down at 37.6F. Check it again in another 2 hours and it’s down to 37.4, in another 2 hours it’s at 37.2 and at this point it’s only a bit more until it’s time to wake up…..and so we wake up exhausted.

Factor in another 1 or 2 night time feeds and one more crying 3 year old and possibly a toilet trip or two and you pretty much have our nights right now. It’s exhausting just typing and re-reading it right now.

A couple of nights in a row like this and we’re feeling a bit run down, both emotionally and physically.

Again, it’s the not knowing that’s brutal…..

Geli’s also been feeling so crappy and we can’t pinpoint why? Could be the regular crappy effects from the chemo. It could be a virus. It could be the start of some infection and yet last week we ruled out infection, so unless something else new is starting….we’re not exactly sure WHY she’s continuing to barf and not eat and not drink.

Today has been a better day than yesterday and yesterday was better than the day before, but that’s not really saying much.

To explain that, she managed to keep down about 200mls of water yesterday. Everything else she barfed up….. She should be drinking about 2 Litres a day which is 2,000mls of water. She managed to keep down her lunch, the second time around and eat a decent dinner but it all came back up….then she ate a quarter of an apple.

I stress about how she can possibly heal and grow and get better when she’s not eating or drinking and then today she’s managed to drink 1 Litre so far and had a piece of toast, a hot dog (gross, but she wanted it) and some Chicken Veggie Soup. She’s working on her next 500mls (half a litre) and we’ve added some electrolytes to it hoping that will also help.

She is feeling better today…..and we’re left not knowing if she’s just a little more hydrated and if that’s making the difference or is it was viral and she’s slowly getting better or another possibility to throw into the mix is that she’s has WICKED amounts of stomach acid and she’s been put back on a prescription strength antacid and after almost 3 days on that…it’s starting to make a difference in the amount of pain that she’s been in (in her stomach – no heartburn, just pain in the pit of her stomach).

So……are we on the mend? We sure hope so because she’s scheduled to carry on with the second half of this current phase of treatment, next Tuesday…..if her counts are good. Which, as of Monday (two days ago) they were not. They were WAY DOWN and once again, she is at a serious risk for infection.

But, we continue to move forward, one step at a time and we trust we will get through this….it’s not easy and we’re really tired but we’re carrying on! And that’s really all we can do!

Lollipop

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Siah & Jude say “Hi”

Jon’s phone has that stupid feature where it guesses what word you are trying to type when you are texting. He was getting quite frustrated when they were in the hospital because it kept substituting words for him that he didn’t want or need. At one point, he was trying to type “lol” and he typed “lol” into the phone and pressed send…..it sent through “lollipop” and it made us laugh….it’s not really very funny, but at that point it was one of those “laugh or cry” scenarios and well….ya might as well laugh.

From that point on, “lollipop” meant “lol”…..

Angelica and Jon are home.

They came home last night around 6:00pm. Angelica is still not feeling one hundred percent and they could and would have kept her but she “sort of” wanted to come home. “Sort of” meaning that she really didn’t want to be in the hospital, but she really wasn’t feeling well enough to be making a choice either way.

They haven’t really been able to figure out what was wrong with her. They have ruled out a bacterial infection, and so at this point it could be viral or it could be something called the “Ara-C Syndrome”. Regardless, of everything, the headache is the WORST. On a scale of 1 to 10…she has pretty much had a constant headache in the 4-8 range for the past 6 days….it’s been bad enough that she’s been prescribed some morphine to be able to deal with it. But, the morphine TOTALLY drugs her right out. It’s equal parts sad and amusing. She hasn’t had any morphine since she came home AND she’s only barfed once…..both of these are massive, MASSIVE improvements over how’s she’s been feeling the past few days.

Her fever is gone. Her headache is typically around a 2-4 and now if she could just start eating and drinking a bit more….then I think that she could get a bit more energy……

She is headed back into Children’s tomorrow morning with an 8am appointment to have one more lumbar puncture and one dose of an IV chemo and then hopefully, we are praying that this next week is a quite AWESOME AMAZING WEEK.

Currently, most of her blood counts are doing really well, considering. They are not normal, but they are on the high end of low and if she was just feeling a bit better, then this could be a really great week for her (and us).

My one sister is taking Jeremy camping this week and my other sister has already taken Xandra camping. I’m hoping and praying that with just Geli, Siah and Judah that I’ll actually be able to get caught up on some things around the house.

There are too many things that have been missed or left undone or, worse, left to pile up and I feel like I can see that I “might get to the place” where I could see the light at the end of the tunnel….as far as my house “stuff” goes…..

Oh well, here’s hoping and praying for that quiet week…..

Admitted

Jon and Geli headed into Children’s this morning and once they got her there, they decided to admit her.

They are concerned about a bacterial infection and are starting antibiotics while they wait for her blood to culture.

We are looking at least overnight for sure but more likely 2 nights minimum and then based on what bacteria grows or doesn’t grow, the options could be….she comes home with viral infection or she stays for a week or so or possibly 2 weeks or longer.

So, basically, she goes in today and then we have no clue about when she’s coming home.

They drew her blood to culture on Tuesday morning and I believe that it takes about 3 days to be able to tell what we are dealing with.

They did start her on an IV antibiotic and she’s had a reaction to it and so they’ve had to discontinue this particular antibiotic, dose her with Benadryl to stop the reaction and they will start a new antibiotic soon.

It’s so hard to hear that there are issues and problems and to not be there with her. It’s not like I could do anything specific, but it’s hard to be away from her…….its all so freakin’ difficult and stressful.

I’ll continue to to post updates as I hear.

Prayers that she’d be healthy and strong and able to deal with and fight off any and all infections and to be able to deal with the chemo and it’s side effects are so greatly appreciated.

Exhaustion….

is having your 3 year old son come to bed at 1am only one short hour after you’ve gone to sleep and having him awake and thrashing around in bed when at 2am you hear your daughter barfing. Then to have your husband fully wake you with the knowledge that your daughter has a fever of 38.1F.

Any fever is treated as serious and severe and warrants an immediate trip to the ER at Children’s Hospital.

The magic number that earns you an immediate trip to the hospital is 38.5F and so we called in to the oncologist on call to see what they’d like us to do…seeing as she wasn’t far off. Just so you know, her normal temp hovers between 36.4 and 36.9. We have to take her temperature daily in the morning and in the evening because when your counts are low, you don’t typically present with normal symptoms of infection…you just get a fever!

So when we talked with the oncologist on call, they said to wait half an hour and take her temp again to see where it was going….At this point I was up and Jon was up, Geli was up and Siah was up….Geli was finishing packing her bag as we were certain that she was heading in for a 2+ week stint of an antibiotics run. When there is a bacterial infection that runs rampant, she gets put on general IV antibiotics for a few days while they culture for the exact strain of bacteria and once they figure that out, they give her the correct antibiotics and then they take her blood every day looking for a test to come back negative for the bacteria. Once they get the negative test, then it’s two weeks on the antibiotics and then she can come home……lovely, eh?

This is what we were preparing ourselves for at 2am on a Wednesday morning. Jon was getting a last minute snuggle in with Siah. Geli had a bag packed and was laying on the couch and I was frantically cleaning the kitchen…..all the while trying to figure out how I was going to “do” everything especially when there was no way that Siah was going to sleep anytime soon, and honestly neither was I. Although I could go and lay down, I seriously doubted that I’d be able to sleep until I heard an update from Jon.

Finally, the half hour was up and her temp had gone from 38.1 to a 38.4 and so Jon rang to let them know they were on their way and that the temp was creeping up and they headed in.

I brought Siah back upstairs to my room and put on a movie for him on my laptop. He watched Enchanted, while I lay there waiting for an update. In the early morning hours time seems to stand still, but Jon finally messaged me and really had no update other than they were there.

He kept messaging me with what little information that he had and the end result was that things looked kind sketchy because she had a fever while already being on antibiotics and who knows what that meant and yet her counts weren’t indicating a bacterial infection and they weren’t admitting her, but they wanted her to say until the Oncology Clinic could assess her and it didn’t open until 8am so they were gonna try to rest and hang around until then. Siah’s movie finished after 5am sometime and I convinced him to fall sleep.

I finally fell lightly asleep around 6ish and then Judah woke at 7:30am to eat. Siah woke up for good just after 8am and I’d not heard anything regarding Geli yet.

Jon finally messaged me that they were giving her a IV dose of a big antibiotic and sending her home thinking she was dealing with something viral and that she could recover just as well at home as at the hospital…. She does have to come in tomorrow morning for some follow up blood work and another dose of antibiotics.

It was nice to have them come home. We have no idea where she could have picked this virus up, but this does speak to her compromised immune system. We feel fine, but somewhere, somehow she’s picked up something. Fortunately, her counts are just on the high-ish side of low, enough so, that she can be at home. Were her counts lower, that would not be an option.

But, this is one of the reasons why we must be so careful right now….Her system is just so fragile.

She’s been sleeping on the couch since 10:30-ish about half an hour after they got home. Jon took Siah upstairs and convinced him to fall asleep with much wailing and tears, but in spite of his exhaustion….Jon couldn’t sleep. Sucks!

I’m surprised that it’s already 2pm….I’m hoping that the rest of the day flies by until the moment I can crawl into my bed and that there are no more hiccups and especially that Geli starts to feel better so SO soon!

High Tide and Low Tide

It’s been almost a week since my last post and we’re still trucking along.

The chaos hasn’t really settled down as much as it’s just shifted or changed direction.

Geli has completed the first two weeks (out of 8 weeks) in this second stage of treatment. She was in the hospital yesterday for another lumbar puncture (with accompanying chemo into the spinal fluid) and then received one chemo drug through her IV and another chemo drug that gets given by two shots, one into each thigh.

She walks away from the day with a sore back, a headache, two thighs that feel like they’ve been kicked by steel toed boots, an upset tummy and some serious fatigue. She woke up this morning feeling really off and has spent the day on the couch or hunched over a bright shiny silver bowl. I’ve given her a substantial dose of Codeine and she is sleeping right now.

She’s doing well considering what she’s dealing with, but it’s not all sunshine and lollipops over here.

I had a really bad day on Sunday. It started out okay and somewhere along the line I ended up feeling completely overwhelmed by everything and then spent the rest of the afternoon/evening crying. If all of “this”, the emotions swirling around everything comes in waves, then Sunday was definitely a low tide day for me. I managed to wake up on Monday morning and things were a bit better, but when the evening rolled around and I needed to decide if I were going to my exercise class or not……I forced myself to go as I need to go for emotional and mental reasons as much as I need to go for physical reasons.

I find that if I can go and work so hard that I can’t really think or focus or concentrate on anything else…..it gives me a break from everything and then I feel so much more able to jump back into the thick of everything and deal with it all from a position of strength…..and so I went. And….surprise, surprise! I felt a lot better when I was finished.

We have a quiet week ahead of us.

This second stage of Chemo is a total of 8 weeks. There are 2 weeks of intensive everyday treatments, and that’s followed by 2 weeks where she’s only scheduled to be in at the hospital for 1 day per week. This week is the first of those 2 weeks. Then we do two more intensive every day weeks and then 2 more weeks of 1 day per week.

Here are the most current prayer needs and praise reports.

Angelica has done amazingly well as far as side effects go and we are so thankful for your prayers. Some of the most common side effects from the drugs she’s currently on are mouth sores, nausea and vomiting, fever and low blood counts. Geli has had very little nausea and has only had one real episode of vomiting. She’s had no mouth sores, or fever, no real other side effects and although her blood counts are low – they are not as low as they could be.

These are amazing things because she could be feeling SO. MUCH. WORSE. than she currently is.

We would love prayer that she would stay physically and emotionally strong, and that her tummy would stop hurting. She says that she doesn’t feel sick and nauseous most of the time, but her tummy hurts or aches and it would be nice if that would go away. Also, we would love prayer that she would recover quickly from her big day yesterday and that the headache that is bothering her would go away.

Jon and I could use prayer that we would stay emotionally and physically healthy and strong. It is tough to deal with everything that is on our plates right now. Also that we would have time and opportunity for each other in the middle of all this craziness. It’s difficult to find the time, and resources to be able to invest in each other at times like this and yet even if everything lines up well….often we are so exhausted that it feels like too much effort to go anywhere and do anything.

Xani is struggling with all the emotions that she is feeling. She tends to feel extremes when it comes to emotions and has been swinging between stuffing her emotions and exploding with her emotions…..both extremely unhealthy ways of dealing with her emotions and so we are trying to walk her through sharing her emotions in a healthy way and at the same time dealing with the fall-out of the stuffing/exploding cycles.

Jeremy is Jeremy! He has so many thoughts and ideas racing through his head and often it is exhausting trying to keep up with him. Alternately, he is frustrated with us that we don’t seem to get or understand or that we just don’t have the time and energy to put ALL of his ideas into practice. It feels like we are in a constant tug of war with him mentally and verbally. It’s hard for him and us.

Josiah….well, lets just say that Josiah turned 3 on August 4th and I still haven’t written odes of love and adoration to him as I reflect back on the last three years of his life. That may or may not have something to do with the fact that currently……on any given day……I’m about ready to strangle the little bugger. He is my love, my darling, my miracle baby and yet…..

The whining, yelling, screaming, constant arguing, climbing, getting into things…..well, it can all be summed up by saying that he is testing his boundaries in a BIG WAY. Normally, this would be okay and we’d just set the boundaries and enforce them repeatedly until he figured out what was acceptable and what was unacceptable…..with everything else going on and the exhaustion that is a result of everything else going on…….lets just say that our consistency is not as it should be. I honestly think that he senses that things are not “right” that they are not as peaceful, calm and consistent as they have been and the chaos is affecting him negatively much in the same way that it’s affecting everyone else.

We will all get through this, and we keep telling ourselves that its just a season, but if you are wanting to pray….this is what we need prayer for right now…

To everyone who is praying…… We appreciate every single prayer.

A Little Clarity

On Monday night, I verbally diarrhea-ed on here. I hadn’t posted in a while and I wanted to get some of the thoughts swirling in my brain out in the hopes of processing them a bit better.

It doesn’t “fix” anything, but typically, it does help me by making things a bit “clearer”.

I wrote about things being difficult or hard and they are….but I think that the hardest or most difficult thing (for me) is that this is such a long term journey.

It’s not like this will be over in a few days or even a few weeks. We are talking YEARS before this journey is over. The knowledge of that is hard for me.

I try to stay “in the present” and I believe that was something that God led me to over this past year knowing that I would need that piece of wisdom to be able to make it through all of this.

But it is a long term journey and I find the uncertainty of it all to be quite frustrating. We are currently in the second stage of treatment, and after this stage is complete, we have 5 more stages to go over the next 2+ years. Only one of those stages is a repeat of it’s self and so for the second time around that stage, we should know what to expect (except in that repeat stage we have radiation to deal with which adds its own uncertainty and unknowns), but for all the other stages, it’s all new and unknown. The drugs might be ones that she’s had before, but at different doses and with different drugs and there is so much unknown and uncertainty in regards to how Angelica will feel or respond physically and even emotionally and also in regards to the schedule.

I haven’t done so well (in the past) with unknowns and so that makes all of this hard for me.

I like to know.

I like to plan.

I like to organize.

And for this…..I can’t. I can’t even say what the calendar is going to look like because although we know what schedule we are following, the schedule can be delayed by low counts and then everything is once again off…..

This makes “planning” things difficult and any of you who know me, know that I LOOOOOOOVE to plan. So to feel so out of control makes all of this even more difficult.

For example, It’s Josiah’s 3rd birthday today, and looking at the calendar and the schedule of Geli’s meds and this week is a bad time to try to plan a party for him. Geli might be feeling okay this weekend, but her counts put her at risk and so it would be better to plan a party for him in a few weeks when her counts should be high….but, that might not be the case….her counts might still be low or….worse case scenario…she might be in the hospital. That’s not something we’re wanting or hoping or even really planing for, but it is within the realm of “possibility” and that uncertainty is something that I find difficult.

I can look at this whole situation know that one summer, one fall, one winter, and one spring of huge uncertainty followed by a few years of a little bit more known schedule is really not that big of a deal in the “grand scheme of life”. We can do that. It’s not THAT big of a deal and it will come and pass quickly.

For example, I can’t believe that Josiah is three years old. I remember waiting for him to be born and now here we are three years later….time passes by so fast….

But to be sitting in the middle of it all is difficult. It feels so intense and pressured and so SO tiring.

THAT is what weighs on me….and being able to talk about it helps a little. It doesn’t make anything better or take any of the “difficult-ness” away but some of the pressure of it all feels a bit uncorked and eased when I talk about how I’m feeling.

Thanks for your encouragement and comments that let us know that we’re not alone and that you’re thinking of us and praying for us. This is a bit of a weird and lonely time and yet, I know that it’s only a season and that each step further down this road takes us one step closer to victory, freedom and a whole new “normal”.