I was getting ready to write a quick post and Josiah got ahold of the computer and posted this:
” cxcccbbnnm,/\\\][poiuytrewqq”.
Please disregard and check back here soon…
Month: July 2010
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
Time Flies By…
It’s hard to believe it’s been over a month since Judah Zane joined our lives.
My Sweet Boy,
You are an amazing addition to our family. I am so thrilled that you were chosen for us. I still feel like we hardly know you and yet I can’t imagine you not being a part of our family. You fit in perfectly with all the crazy, passionate, vocal, chilled-out, intense rest of us.
In just the last week, you have managed to go slight;y hoarse from screaming when we don’t pick you up fast enough. You are so relaxed and laid back and easy going, and then……..BAM – there doesn’t seem to be any wind up or lead up time, you just go from happy to wicked pissed, and as soon as we pick you up, you’re okay. It’s equally amusing and slightly horrifying. I wonder if this will carry on or if you’ll figure out that we’ll come even if you just start to get upset. I figure that as the youngest of 5, you just want to make sure your voice is heard?
You were 13 pounds 12 ounces at your last weigh in almost 2 weeks ago. I wonder what today’s visit will say that you weigh. My arms and shoulders can totally testify that you’re even heavier now than you were then. At some point I expect to have some serious “pipes” as you don’t like to be put down and yet you weigh a ton…..You definitely like to eat. And yet, with all that you eat, your night times are so SO sweet and for that I thank you and am willing to carry you to the end of the earth.
When you fall asleep around 9pm and then typically only wake twice in the night to nurse, I can forgive you much…..heck, there are many nights when your (almost) 3 year old brother is up that many times (or more….)
I love to look at your little ears and your sweet head, your chubby thighs and to see you wrap your sweet little fingers around mine. All these little parts of an amazing whole….you complete our family, little one!
As I mentioned already, you love to be cuddled and held and you could sleep forever as long as someone is cuddling you close. You are so “squishy” and there are time when my heart wishes I could express the depth and fierceness of my love, and yet no words seem adequate enough and so I just hold you, whisper words of love and pray that the magnitude of my love for you is just “known”.
This is a crazy, CRAZY time to born into, and I pray every day that I’m able to take each and every moment and love each and every one of you kids like it were my last day on earth. I want to live and love and laugh with no regrets and I want to pass that same desire on to each and everyone of you.
Time seems to fly by so fast and before I know it, you’ll be as big as your older sister….it seems like I just blinked and now she is a teenager…..
…and so I hold the memories of these days close to me. Days when you were tiny (comparatively) and slept and fed and cuddled and smiled because of the gas bubbles. That one seems to carry on though….your brothers both take great delight in their gas escaping both ends and I’m sure you will continue to find joy in that as well.
I believe these feet will take you place in your life that I could only dream of. You are created for greatness, my son. I believe this strongly and I will continue to encourage you walk the path that you are destined for, whatever that may be.
Welcome to our lives, my sweet boy. Welcome to this world. It’s gonna be a better place because you’re a part of it.
Love your Momma
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…..
Here is mid-cut…..
Shortly after Nana’s cut was finished…Aunty Chelle showed up…
Aunty Chelle is pretty goofy and here she is with the typical shave down the middle….
And here she is rocking the massive comb over….
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….
Even the crazy pink wig looked awesome on her….
Here is the group shot at the end of the massive hair cutting session. Geli’s getting pretty good at the close head shave.
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.
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.
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.
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!
Needless to say, I called the salon to cancel the perm. 🙂
peace.
love.
shalom.
Aunty Bubbie
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”……
….then we cut the pony tail off….
……and then started shaving….
We had lots of help…..
Lots and LOTS of help….probably more than we really needed,but hey! Gotta pay attention to the details, right?
And then we moved on to Angelica….
And Siah decided that he wanted to get in on the action…
But trying to shaving a moving target……
Well, lets jut say that his head shave is a little less than perfect…
We finally remembered to take a good shot of Momma and Geli…
Xani came home after dinner and decided she wanted in on the action…
So, here was the before shot…
And here we are after it’s all done…
And later on, Papa came over to join in…
Here we are listening to him ask for just a little off the edges…
We figured while we were at it, we might as well see what Papa would look like with a little male pattern baldness…
We needed to rock star it out a little…..
Here is the official Head Shot…
But…..the best part of the whole day AND night was when Pap put on this wig….
And watching him do the head shake and hand flick made it apparently obvious that he’s had long hair in the past….
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