Category: Gelica

Summertime Fun

This summer has been unusual, abnormal or atypical, to say the least!

We are trying to keep things as normal moving along in a fun and relaxed way while at the same time taking the necessary precautions to keep things as safe and healthy as possible.

Knowing that we are heading into a period of time where Geli’s infection fighting ability is at a low (to non-existent) point, I was trying to figure out something fun that we could do to celebrate the long weekend. We need to be away from gatherings and crowds, and so that make everything a little more difficult and limits some of our regular “go to” family activities.

I figured that we could have a picnic. The kids ALWAYS want to pack a picnic, a blanket and some games and spend an afternoon together, and unknown to the children – that is what we planned.

When we woke up that morning, the weather looked yucky and worse, IT WAS FREEZING!

And so my brain went into overdrive to try to figure out how we could still do something fun, but indoors…..

We have a large shag rug that I figured would be perfect for a little indoor mini Bocce Ball Game. We had a small whiffle ball for the target and 3 pairs of hard rubber bouncy balls in blue, yellow and orange. Then I was going to set up bowling with a bunch of empty water bottles, and a tennis ball. Our hallway is the perfect spot for that. Then I figured that we could pack our lunch basket and put a blanket on the living room floor and I was even thinking of different ways to make smores either in the oven or over the bar-b-que.

I figured that even if the weather didn’t co-operate that we could still have a great and fun adventure of a day.

Fortunately……by lunch time, it was warm and the sun was trying desperately to peer through the hazy clouds. So, we packed everything up, told the kids that we were headed to Derby Reach, got in the van and headed off.

We got there and headed out onto the grassy field to lay our blankets down, and sat down and ate.

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We get KFC about once a year and that’s enough to remind us that it’s SO DISGUSTING and then it takes us about a year to forget just how gross it really is and then we order it again….

Nana and Papa came down to join us and then it felt like a party and not just a picnic…

Jon sat and held Judah in the shade….

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And Judah was fine for a while but very quickly decided that he didn’t really want to just sit and he informed us of that quite loudly….

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Geli, Xani, Nana and myself decided to play a rousing game of rummy…

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Jeremy told Papa all about his creations and inventions and tried to talk Papa into building an electric chair on a track that would go from the top of our house all the way down to the basement for Judah to ride on so that it would be easy for him to get around…..

Papa seemed quite amused by Jeremy’s ideas……

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but then HONESTLY…who isn’t amused by Jer’s ideas…my sweet, SWEET boy!

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Judah finally chilled out when we laid him down on the blanket….I think he liked looking up at the giant tree that we were sitting under.

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We played about 10 rounds of rummy, but Xani got bored and dropped out of the game…..

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Nana had a good attitude throughout the whole game even though, I whooped her’s and Geli’s butts…..

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Isn’t she pretty?

We found this little guy crawling on our blanket…..cute little pink lady bug!

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Papa took Jeremy and Xani for an adventure walk through the trails and Jon took Siah down to throw rocks into the water. Siah managed to get soaking wet, and then in true Siah like fashion…..he came back to where we were sitting and a HUGE mole hill sucked him directly into it’s core…

He just threw himself face first directly into a pile of dirt!

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I could complain, but it kept him entertained…..

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and captivated…..

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for ever…..

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I think that this was the best part of the whole outing as far as he was concerned. And then……oh, AND THEN..

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Then he decided that he was not quite dirty enough…

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Oh baby! I think he just wanted another dunk in the river….which we gladly obliged and then we packed up and went home……The End!

Actually, it was the end of that particular adventure but little did we know that it wasn’t the end of the day….there was another exciting adventure waiting for us, but I’ll save that for another post……..

It was a great day and we have some great memories of a fun and special day.

Edited to say: You can click here to see the whole set from our Derby Reach Adventure

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

The Wig Must Choose You…

Last Tuesday, we had our first ever head shaving party, we were trying out all the different wigs and scarves and hats that we owned, were lent or had been given……and some how someone mentioned that the wig must choose you.

There is this one wig that pretty much NO ONE has looked good in….and other wigs that have looked amazing on different people.

So that turned into the catch phrase and it has carried forward….even on the day when Geli went and choose her “real” wig. She looked at a few. Even had a hard time choosing between different styles an colors. She tried one on and it looked pretty good, but then she tried one more one and that was it. Whether she chose it, or it chose her…..it was just “The Right One” and when we do finally get to pick it up…supposedly later this week…we’ll show you just how AMAZING she looks. I think she looks pretty amazing with or without hair, but there was just something about this wig…the color, the cut….it’s totally awesome.

Well, Wednesday morning, last week – Nana Karen showed up asking for her hair cut…..

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Here is mid-cut…..

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Shortly after Nana’s cut was finished…Aunty Chelle showed up…

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Aunty Chelle is pretty goofy and here she is with the typical shave down the middle….

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And here she is rocking the massive comb over….

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After the head shave was finished, Aunty Chelle tried on a few wigs and unbelievable…she rocked the wigs….even this lovely green one. This is the wig that looked good on NO ONE and yet….aside from the crazy eyes, she rocks the green wig…This wig obviously chose her….

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Even the crazy pink wig looked awesome on her….

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Here is the group shot at the end of the massive hair cutting session. Geli’s getting pretty good at the close head shave.

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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.

That’s How Strong My Love Is

This was an e-mail sent from my sister Debbie to Angelica. I’ve asked both of them for permission to share it with you.

So, I had an appointment to get a perm this weekend. I’ve always wanted some wave in my straw-like, straight hair, so I thought it might be a fun thing to do for the summer. I didn’t realize Geli’s hair loss was coming on this soon.

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When Geli first was going thru this whole cancer process, I told my husband that I would want to shave my head when the time came for Geli to do it. In my mind, I can’t imagine having to go thru everything that she is going thru and not even having a choice about it. At least I could choose to loose my hair. But when the time came, I was a lot more nervous than I expected. Would those around me still think I was beautiful, would my husband still want to hold me, would my infant son still recognize me…I know how I look in a swim cap and SEXY definitely comes to mind. (NOT!) But, it is just hair. And…I have the choice.

My beautiful niece, you did not choose this path, but you are weathering it beautifully in your own unique way. Geli, you have always been a “walk to the beat of your own drum” kind of girl. You makes crazy cool fashion choices, and you aren’t swayed too much by the hype of most teens today.

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As an adult, with all my grown up-ness,reasoning and “maturity”, I still have fears or concerns. I can’t imagine what it would be like to experience this as a teen. But again, it’s just hair. And…I have the choice, you didn’t.

Geli, when you were a baby, I taught you to scream for joy when you saw someone you loved (much to the delight of your mom). Sweetheart, now you teach me to scream out for those I love. Whether it’s screaming out prayers of injustice or encouragement, or screaming out fears or shrieks of joy. I guess i want you to know that in the same moments we can scream out for joy, we can be screaming out for fear or pain as well. And that’s OK.

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Geli, I want to walk this road with you as much as I can. But when it comes down to it, this is your journey. We stand along the way with you cheering you on. Sometimes we walk a bit with you, sometimes someone like your mom or dad carries you, and sometimes you are on your own. But in this crazy act, we join you.

I guess, Geli, by supporting you this way,I want to let you know that you are loved, beautiful, gorgeous, talented, and that you are brave and valiant. And in all your strength, it’s OK sometimes to feel nervous or some fear. Because we make the choice not to live in that fear. And we know that perfect love cast out all fear, and Geli you are surround by “perfect love”…and a whole lot of our love too!

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Needless to say, I called the salon to cancel the perm. 🙂

peace.
love.
shalom.

Aunty Bubbie

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That’s How Strong My Love Is

If I was the sun way up there
I’d go with love most everywhere
I’ll be the moon when the sun goes down
Just to let you know that I’m still around

That’s how strong my love is, oh
That’s how strong my love is,
That’s how strong my love is, baby, baby,
That’s how strong my love is.

I’ll be the weeping willow drowning in my tears
You can go swimming when you’re here
I’ll be the rainbow when the sun is gone
Wrap you in my colors and keep you warm

That’s how strong my love is, darling,
That’s how strong my love is, baby,
That’s how strong my love is, oooh,
That’s how strong my love is.

I’ll be the ocean so deep and wide
I’ll get out the tears whenever you cry,
I’ll be the breeze after the storm is gone
To dry your eyes and love you warm

That’s how strong my love is, baby,
That’s how strong my love is,
That’s how strong my love is, darling,
That’s how strong my love is,

That’s how strong my love is, so deep in,
Well, that’s how strong my love is
So much love, yes so much love, oohh,
Yes so much love, yes so much love,
Anything that I can do, I’ll be good for you,
Any kind of love you want, I’ll be with you….

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

The First Cut is the Deepest

Well, yesterday was a momentous day in our house.

We had the first ever head shaving party.

When Geli was diagnosed with Leukemia, the Doctors and Nurses had mentioned that Angelica might lose her hair as a side effect of the chemotherapy. She seemed to be okay with that, but then…it hadn’t happened yet and so we figured that we’d just deal with it, if and when it happened.

Well, Geli managed to make it all the way through the first month before her hair started to thin and then….it started to thin quite rapidly.

The biggest issue was the hair falling out and sticking to her body. You know that feeling when you’ve got a stray hair stuck to your back and you can’t quite get it off….now imagine 50 hairs all over your arms and back and neck and inside your shirt….not fun eh?

And so, yesterday I asked Angelica if she’d like to shave my head so that she could see what it would look like, if she were to shave her head…and she said yes!

So, we grabbed the buzzers, took a picture to show the “before”……

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….then we cut the pony tail off….

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……and then started shaving….

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We had lots of help…..

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Lots and LOTS of help….probably more than we really needed,but hey! Gotta pay attention to the details, right?

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And then we moved on to Angelica….

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And Siah decided that he wanted to get in on the action…

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But trying to shaving a moving target……

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Well, lets jut say that his head shave is a little less than perfect…

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We finally remembered to take a good shot of Momma and Geli…

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Xani came home after dinner and decided she wanted in on the action…

So, here was the before shot…

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And here we are after it’s all done…

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And later on, Papa came over to join in…

Here we are listening to him ask for just a little off the edges…

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We figured while we were at it, we might as well see what Papa would look like with a little male pattern baldness…

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We needed to rock star it out a little…..

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Here is the official Head Shot…

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But…..the best part of the whole day AND night was when Pap put on this wig….

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And watching him do the head shake and hand flick made it apparently obvious that he’s had long hair in the past….

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He looked like he’d just stepped out of the Coast Capital Banking Commercial….it was AWESOME!

We had a good day with lots of laughter and although it could have been a tough day….I think it turned out okay.

We will be adding pictures of Nana Karen, and Aunty Chelle as soon as download them off the camera….they came over this morning to add their beauty to the mix……

Everyone looks so beautiful……its amazing how much stock you put in things like hair, but to see that hair only adds to your beauty…it doesn’t make or define you as beautiful…..Beauty is who you are!

How many oncologists does it take…

First off, I’ve been dreading the Wednesday meeting.  We are supposed to go in and meet with the oncologist in charge of our case and discuss the results of the last marrow biopsy and spinal fluid biopsy.  Results of greater than 0.1% leukemia cells would get us another two weeks of induction and 0.1% or less would take us to phase 2 of the treatment.  I have been a pillar of faith through most of this, knowing and believing in the outcome even if Angelica and I (and the rest of our family) have to walk it out, but we’ve had so many unexpected bad experiences so far that I kind of knew what the results were going to be… we were for sure gonna have two more weeks of induction.

Enter Monday Morning… Patti comes down the stairs as I am thinking about making coffee and says, Angelica has an infected toe.  It was an ingrown toenail that had developed some redness and puss.  A quick phone call to confirm… they want to see her at the clinic at Children’s.  No fever, No other symptoms, but we head off to Children’s without coffee… and this all seems so ridiculous because we have to come in on Wednesday anyway for our meeting.

With a suppressed immune system, any infection can spread unchecked and any infection could be fatal, so even a toenail gets thoroughly checked out.  At one point the three most senior oncologists that were in the clinic that day were all in our exam room looking at her toe… at which point I wanted to start a round of jokes with: “How many oncologists does it take to treat an ingrown toenail?”

They decided to double check her blood counts and prescribed some antibiotic pills that she can take at home and as soon as we got the results back from the blood and the script got filled, we could go home.  This was amazing to hear, because I was sure they were going to tell me that she needed to stay for a couple days.

While we were waiting for the script to get filled, our ‘coordinating nurse’ came in all excited and said “Has Tim come and seen you yet, the marrow results are in?” (Tim is our senior onc)  We were not expecting that they would be in till at least Tuesday.  I said no and she informed me with great delight that Geli was MRD negative and then left the room.  While I was happy that she was happy, it took me a second on my blackberry to google the possible definitions of “MRD“.  It stands for Minimal Residual Disease.  So to be MRD Negative means that there is not even a minimal amount of the leukemia cells in her marrow.  It means that she is at 0.00% leukemia cells in her marrow.

A little aside here… There are at least four stages of leukemia treatment in youths.  The first stage is getting to MRD negative or at least a low number MRD.  Kind of like a baseball inning that does not end till the third out, they keep treating until the desired result is met.  This means that we can go on to stage 2 and greatly increases her odds of never having a relapse. The other thing to note is that leukemia is mainly active in the marrow of the bones, but it can “hide” in lymph nodes, liver and a host of other places.  The next stages are designed to “flush” it out and get rid of it in everywhere it is known to hide.  So there are various drugs, and various chemo treatments that are administered in a specific order.

This news was a bit of a blessing, because it took what I was preparing to be a negative meeting and completely derailed it.  Now we know what to expect, there is nothing to “brace” ourselves for, there is no Wednesday meeting to decide… it is all laid out and planned.  At this stage of the process and our family and our lives, having some variables removed is WONDERFUL.  There is chemo and there are side-effects that come with the various stages, but at least we know when they are coming and what to do to prepare for them.  This road doesn’t become easier, just a lot more planned out.

We asked for prayer for the Wednesday meeting, for good results, for God’s hand and His peace on us.  God has been on today, right from the beginning of getting us in there with a toenail. (and we did come home and she is feeling better) Thanks to everyone for the prayers and support.

Jon