Category: Health

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”.

It’s “THE CALM” …………

I don’t want there to be any storm following this calm period and so we’re just stopping with, “THE CALM!”

This past week has been – shall I dare to day it – FABULOUS….you know as far as chemo and side effects and Lumbar Punctures and Full Body Bone Scans because of legs that refuse to un-gimp themselves despite physio and chiro and massage and…

Well, We’ve got one full complete week under our belts and Angelica is doing AMAZING.

Honestly, I think that she is feeling better than she’s felt in months. It’s awesome to hear her bossing around and bagging at her brothers and sister. It sounds so “normal”. She was so quiet and down and tired and….well, when I look back, I think she had been sick for a while. So not cool! She has life in her eyes, a spark in her step and… an edge to her voice (hee hee) that has been so lacking for a long time.

The chemo make her feel a little “off” but over all she’s doing okay. We are trying some different options for her with her oral meds and it seems like it’s helping with feeling yucky in the mornings.

Her leg has finally started playing nice and is stretching out nicely and not hurting her any more, and the bone scan showed that she has a fabulously healthy teenage skeleton with no issues.

She is headed into Children’s early tomorrow for another Lumbar Puncture and a IV shot of Chemo. They are going to take her bloodwork and we should know where her levels are at that point. They are expecting her levels to all have dropped or to be dropping and to be at their lowest by the end of this week. This can be a little scary or nerve wracking as we feel a bit on high alert for anything “going wrong”. She could get a fever and end up in the hospital for 2 weeks on a run of antibiotics and that would TOTALLY SUCK!

We are asking for prayer over this time that Geli would remain infection free and that things would just carry along smoothly and that we’d be able to continue along with the treatment plan with no side effects and no delay of treatment. If her counts go too low, they have to delay the treatment until her counts come up….

She is also scheduled to go and pick up her wig this week, and that should be so much fun!

I’m feeling….well, I’m feeling all over the place.

I’m trying to hard to stay on top of things….the house, the meals, the laundry, the kids….and I feel like if I don’t keep going, that I’ll get behind and everything will fall apart or become completely overwhelming. I feel like I’m going in super mega overdrive from the moment I get up until the moment I get into bed and even then….all I can think of is everything I didn’t get accomplished that is piling up on top of everything else on the list for the next day.

I also find that emotionally, mentally and physically, I have nothing in reserve and so it takes very little to deplete whatever energy I had and then I crash.

For someone who thinks she can “do it all” this is so SO frustrating. I feel so upset and angry at myself. I know that our child was diagnosed with cancer and then I spent 2 weeks living in a hospital with little to no sleep before I had a baby and then went home to care for 4 kids for a week, and then headed back to the hospital for another week with a newborn and that I was riding a wicked WICKED emotional roller coaster during all this time, but to see and feel how “off” I am – it’s so discouraging.

Geli went and visited my mom (across the street) on Saturday and so we took the opportunity to run a few errands. I went into the first store while everyone else waited in the car and by the time I came out – 15 mins later – I was DONE! Honestly, Emotionally and Physically, I was spent and yet……..We HAD to go grocery shopping and we also needed to hit another store on our way home.

I know that the easiest thing, would be to just say….well, we’ll do it later. But, honestly, there is so little “available” time with Jon or the van and by the time the evening rolls around…I’m so spent from the day…I’m not doing anything except praying everyone goes down early so I can too.

So, I powered through, got home and lost it. AWESOME!

But, we have groceries, and the rest of the week planned out and taken care of and so at least that’s one thing that I can scratch off the list.

Honestly, things are so “off” around here and its showing in everyone. Everyone is off just a bit. Xani is melting down regularly. Josiah is testing every boundary and doing so in either a whine or a scream. Jeremy is fixated on the computer to the detriment of everything else in life. Geli is addicted to solitaire on her iTouch. Jon is short and testy with everyone and I’m exhausted and so close to falling apart. It’s brutal!

This is so far off of how I “see” my family being. This is so far off of everything that I’ve worked for for years and yet…..right now we are just coping…and barely doing that.

I’m scared. I’m scared that Geli will end up in the hospital for another big chunk of time and I’m not sure that I could handle all of that very well. Obviously, I get no choice…I’d have to handle it and yet, it’s the “very well” part that I’m concerned about.

This is difficult.

I’ve sat down tonight purposing to write something…anything (as it’s been a few days) and yet I have nothing concise or well thought out to share. I feel like I’m just blathering on and on and on with no clear point to make and I don’t want to come across whining and yet…this is hard.

This is brutal tough road to walk and yet, walk it, we must!

It feels like we are just scraping enough energy together to just be able to put one foot in front of the other. There are a million e-mails that we want to respond to. Phone calls that need to be returned. People to be connected with……and no time to do it in. Or even if there is a smidgen of time, there is little to no energy to do it with.

We hope that no one takes it personally, if we don’t respond in any sort of a timely manner.

There are only so many things that we can cram into one day and some days………well, lets just say that most days we feel like we are sinking and a good day feels like we’ve treaded water all day and just managed to hold steady.

I’m trying to believe that things are getting easier and I think they are. Slowly, but surely…I think they are. I hope?!?

One day! One hour! One minute! One breath!……..

One too many things to juggle

I was talking with Patti the other day about the ‘costs’ of dealing with a child with cancer. The medical protocol is a well tuned machine at this point, but the schedule for visits, drug administration, tests, etc. has the hours of a full time job. We can see how a family could loose everything, or have to sell a house, or something to get through this, because you can’t go back to “normal”.

In our situation, there are some things that we are finding hard to balance. 1) we have a daughter who is fighting cancer (and winning). 2) we have a new-born son who requires a lot of holding and feeding and usual new-born stuff. 3) we have a 2 year old that is very busy and wants to touch and climb and jump and run and search for gum, not to mention spitting, throwing food, peeing his pants, dumping makeup on the floor, and he also has an egg and dairy allergy that keeps us on our toes. 4) we have work to fit in there somewhere. 5) oh yea, there are two other kids, one that has AD/HD, and one that has well developed adult emotions.

Patti is a very organized and capable person… she could do any combination of 1+2, 1+3, or 2+3, but 1+2+3 is too much. I could do the work thing, or carry the load of the one that patti cant carry, but both is really hard. We are trying to find balance and we have very understanding work situations and supportive family and it is still almost more than we can carry.

Today serves to show what I mean. I have a daughter that needs new glasses and needs a visit to the optometrist that we really trust in abbotsford, but he only works a few days a month here and we booked a visit… but had to move the visit because of a conflict with an appointment for Angelica. I’m not usually the one that would organize this stuff, but we are all giving-and-taking. the appointment got moved to Thursday and i made sure to take the last appointment slot at 6:00 so I could make it and I JUST made it after driving ALL day.

The receptionist looks at me blankly and says “I don’t have your kids booked today”. ???

It seems that NEXT Thursday they are booked and that detail was overlooked in the conversation between Angelica’s doctors and me taking the call from the optometrist’s office and trying to remember all the details for everything until I could write it down…

I sigh and realize that I will have to do this trip again next week and that… I have one too many things to juggle.

Jon

Round 2, Day 1

Jon took Geli into BC Children’s this morning.

They left before I had even crawled outta bed. They had an 8am appointment and so they left here at 6:40am. I was awake when they came in to kiss me good bye, but was still a little groggy. I had both Judah and Josiah in bed with me at that point. Our morning sleep in was cut short when Siah rolled over and slammed his head into the corner of Jon’s bedside table…..what a morning wake up call. Man!

I do know that Geli was the first appointment, and that she had the Lumbar Puncture, and then received her two chemo meds, had a big long visit with a physiotherapist, who seemed determined to figure out what’s up with her leg (it’s still bothering her 3 weeks later) and that they left to come home around 4pm. Aside from that, I don’t know much as I wasn’t there. Jon says that everything went well and that Geli felt pretty positive all day. She ate when she got home and then headed immediately up to bed.

We do have to wake her to give her another chemo med, her antibiotics and some gravol, but she should go right back to sleep again – at least I hope.

We have been told that this week should be a fairly good week for her, it’s next week that they are concerned about. Her counts could go quite low again….low as in decimated and we’d be once again on high alert for any possibility of infection, fever or any other indicator that something might be wrong.

We are praying with desperation that she stays as healthy as possible and that any brutal side effects would just avoid us……

Then, we have 2 weeks where we wait, hope and pray for her counts to come up again, and then we start the 4 week cycle all over again. 2 weeks on meds and 2 weeks off….Absolute best case scenario…this whole cycle is done in 8 weeks…..or it could take longer….which would obviously NOT be the best case…..

Today at home was….interesting.

Xani had a meltdown. Jeremy wanted to play on the computer ALL DAY and sulked and pouted when I kicked him off, Siah wanted to be anywhere and everywhere and to get into everything, and the baby cried when i put him down.

My biggest accomplishment today was that the kids were mostly sort of fed, and I didn’t “lose it” and end up a crying, bawling mess.

From that stand point, I consider today fairly successfull…..from any other standpoint, today was a colosssal failure.

Knowing how much I’m typically capable of and able to do…..makes my glaring lack of accomplishment today so much greater.

I don’t know how anyone does this.

I don’t know how we are going to get through the next month….let alone the next year of treatment….and yet we must!

Have you ever felt like you needed to take a big deep breath and you just couldn’t? The only thing you could do was to keep sucking in these little tiny sips of air….and you wonder just how much time each tiny breath is going to buy you?

This is a long, tough road and I know we will get through it. I’m just not sure how and the unknowns weigh heavy on me. The future weighs heavy on me. I’m feeling pretty weighed down right now.

I’ll be okay.

I do want to say thank you to everyone who has given a meal(s) or a gift card(s) or a card or sent an e-mail or even a comment…..

I keep trying to compile a list of people to send thank you’s too and I feel like my brain is a HUGE sieve. We are so grateful for everything. Every bit of love, care and support is truly felt….Everytime we eat a meal given, or buy some groceries or feel the love sent through some caring, thoughtful words – we are so touched and blessed. You have been such a blessing to us.

I, never in my wildest dreams, ever fathomed that we’d be on this journey. I never ever knew what other family’s who are dealing with cancer went/go through. This is a whole world of pain and hurt and physical, mental and emotional energy spent, that I could never have fathomed before now.

Thank you for everything. We are truly thankful!

What is and what will be

When we first sat down with our doctors and nurses and coordinators and the social worker all assigned to us at the first diagnosis, they talked in detail about what we were about to face.  They talked a lot about the first phase of treatment and that there were four (or more) phases. To be completely honest, I kind of blanked out when they finished off the first phase.  It was all I could do to focus on the next hurdle; the next goal. As we made it through that phase, it was very much like they prepared us for (except they said most kids experience at least one side-effect; they didn’t say we get to try them all).

Thank you for praying:
We made it through the first stage (Induction), and met all the bench marks.  Angelica has stopped the steroid that was causing the diabetes, and has also stopped having diabetes, she finished induction with 0.0% leukemia cells in her marrow, and her blood counts have come up enough to start phase 2, and most importantly her numbers are up enough that she can tackle a few public outings.

2 Days of Summer:
With Gelica spending most of the first month in the hospital and starting phase 2 (Consolidation) on Monday, she effectively gets to enjoy summer for 2 days. We’ve gone to a movie that we were supposed to do for Alexandra’s birthday with her friends (which still hasn’t happened) and today we are going to a pool and having a BBQ.  When Angelica was at her weakest, I told her that she would be feeling better and that there would still be some summer left to enjoy, and she replied that if she could go do Rick and Linda’s pool just once, then it would be ok.  It’s now or never (probably).

Consolidation:
Where induction is aimed specifically at the marrow, consolidation is aimed at eliminating leukemia cells throughout the whole body. Leukemia cells can hide in the body at levels that are currently undetectable. So it is a treatment based on theory and years of statistics. There are no actual benchmarks to aim for, as there is nothing big enough to test for, but nonetheless, it is an intense therapy.

Consolidation consists of several drugs, most of which are various forms of chemotherapy.  It will bring her marrow and her blood counts down again, which is why Angelica needs to have reasonably good counts to start with (they are not up to normal, but are just considered low as opposed to very low).  The main side effects to look for are mouth sores; diabetes is not a side-effect of these drugs. The biggest issue we will face is the practicality of driving in and out of the hospital with this treatment.  There are a lot of visits scheduled, most are in the middle of the day and there are four other kids (one of which is a new-born) and work and such that have to be worked in and around.

We have to go into the hospital for a full day, then three hour-long visits over four days for two weeks, then two weeks off, then two weeks on, then two weeks off…  This phase is scheduled on a calendar over 57 days, bringing us to September 20th.  Angelica will likely not get to school at all in September, and this is her first year of high-school, so she’s a bit disappointed about that.  She will likely have blood counts that are low enough through this time to keep her and our family for the most part in isolation.  This is not a fun road.

Please pray:
We need prayer for the treatments to go well, and for Gelica to not get any sores. We need to really pray again that she doesn’t get any infections during the course of treatment so she doesn’t have to stay in the hospital. Pray for peace and good communication in our home. Pray for schedules to coordinate and for there to be enough hours in the day to get everything done that needs to get done.

Thanks, Jon.

PS: A special thanks to the Tulloch family. Even though I haven’t gotten to meet you yet, knowing that we are in some way connected to a family that has gone through this not that long ago, and successfully is a great encouragement.

One of these things is not like the others

“One of these things is not like the others” was my favorite Sesame Street song.  You have a choice of three or four things, and one of them doesn’t fit the pattern for some reason. Well some people following our family have noticed that everyone is bald, except dad (that would be me).  (And Jeremy is excluded from this if he wants to be).

I just wanted to set a few people at ease as to why I still sport my nice long locks. We have shaved quite a few heads over here, and there are quite a few more pictures to show of people who have joined in, and one tear-jerking email that we will post from one of the shaved that explains why they are doing it. During all the festivities, Gelica informed me that she didn’t want me to shave my head.

I like my hair, but its not the most important thing in the world to me, and it doesn’t even compare to the importance of Angelica. I sat down later and talked to Angelica about what her thoughts were and what all this means to her. The different people that are cutting their hair means a lot to her. She is learning about how people care for each other, how people “join” in standing with her, and a host of other valuable life lessons, but she is starting to realize that EVERYTHING is changing.

That’s an interesting thought, because in a lot of ways for her, everything has changed. There are many things in her life that will never be the same. There are days when all the change is too much… not many days, but some, and right now, she doesn’t want me to change.

Spending this past month or so with her so close, through so many trying things has brought us closer together than I ever could have expected. I am really really really in love with my daughter and am really enjoying all of the wonderful things that make her soooo strong and able to face this. We have our own inside jokes, learned each others opinions, and many more things that will last a life-time.

If she wants one thing to remain “constant” and she sees that in my appearance, then I am all for that. But in the spring when everyone else’s hair is growing out and things are returning to a new normal, there is a fund-raiser called “balding for dollars” and I’ll probably be there. I have been assured that I would raise a lot of money being a guy with long hair. I also realize that we have benefited from so many programs and special funds that if I can give back then, then I will.

Jon