Day 18- "Snowglobe"

No one likes when their child is sick, but when they have an infection that leaves the hospitalized for four days minimum- we will know more tomorrow morning- it is scary. Your child is fighting for his life. Human error that doesn't usually happen at this hospital, we are talking in the United States one of the best, has happened twice, one of which caused this. Our first Christmas together as we became a family my mother gave us a set of snowglobe ornaments with each person's name; she has welcomed them all wholeheartedly into our family- that's who she is. I'm hoping that tomorrow morning's blood culture is clear- if not it's another 24 hrs each time it isn't. 

                                                               

Month 9- Day 1- "Fluid"

                                                               

One thing for certain about cancer is the fluidity of worry- is the treatment working? Will it all come back? How much will this cost out of pocket before we are finished? What happens when he is too old to be on his parents' insurance but is still in college because it was delayed from the cancer? He has come so far, but there is so much further to go- this will never end for him. It will be like the oceans of the world, surrounding him with darkness and fear in it's depths, but him taking each wave as it crashes, each riptide when he gets caught, and enjoying the beauty when he can. But, cancer is as fluid as the ocean, we cannot stop it or tame it, the best we can hope for is to make it safe and never leave him stranded alone on the shore or in the dark depths.                                
 

Day 23- "Make A Wish"

"Plans and Projects"- Day 21

It is a real treat for the 8 of us to be together; it happens once in a while for dinner or an afternoon.  It has happened for vacation once, as one child wasn't permitted to spend the night with us until he was 18 and could make his own choices.  That trip was super special for all and gave kids that are siblings and step siblings a chance to bond, and gave a father a chance to have all of his kids for a week.  Three other trips we have had 7 of us, once due to the "under 18" rule, once someone had other plans and once, well...leukemia. This year we had the all clear to go to FL for a week from the doctors at Johns Hopkins.  Plans included being within an hour of a good medical facility and referrals to doctors with all necessary information in hand should we need it.  However, we didn't plan to need it, things were looking up.  Four weeks ago our leukemia child ended up in the ER- and back in for an overnight for a transfusion.  A week later, same thing.  We had gotten an unofficial diagnosis about why, but then his marrow started producing it's own red cells again, slowly but surely.  This scare made our decision to stay semi local- DE beaches, so we are several hours from his hospital, if for some reason he can't come the whole time he can get there for part of the time, and he and dad are especially more relaxed about it.  Now, it can take hours to search for a place with 7 beds (they don't want to share, understandable), a pool table (need something to do for when he especially can't be outside), near the beach, and with a pool.  After much searching we (ok, I) found it...the other kids, while they would love to go to FL, are all being very gracious and say all they care is we all get to go somewhere together (though when I asked if that meant we could do Niagara Falls area I got 6 no, we want the beach...I tried).  It isn't easy to get kids that are 12-15-17-18-20 & 23 (that will be ages this summer) all in one place at one time, so this is exciting.  Hoping for no medical problems to hold him back, and that he and dad in particular can have a relaxing week and time together; I cannot make up for the time they've lost due to his mother's restrictions, but I can try to provide opportunities for memories and fun times.  Maybe he will even just get to be 20 for a week if he is feeling good.  

One good thing is they save us money by being happy to eat in (that way they don't have to come in and get all freshened up by any particular time), and I am  happy to cook.  Makes my Pinterest browsing time more credible ;).  Then, I make a One Note section for the trip, with a page for all information on the home/payments (I use VRBO all of the time and have had a lot of luck), one for meal plans for dinner (what will go with what- plan for 6 and pizza on the 7th), pre-thinking the quick and easy for day one when we get down a little later, one for recipes (copy and paste from Pinterest board), and one for grocery list and bring from home list (I may have issues, because I have admittedly made baggies of herbs/spices etc, labeled, and brought on planes to avoid buying whole containers of things I need 2t. of).  It works for us.  They all basically get to have a great week and I am ok with basically setting up breakfast and lunch and cooking, and I feel they are grateful.  They help when asked (we pondered since there are six of them putting them each in charge of a night of meal planning and prep, just tell us what to buy or we will give you the money to buy, but something between the potential control freak in me and the fear I will eat Kraft Mac & Cheese at least twice & steak & expensive food another two had us thinking maybe not).  

We try not to be overly excited at this point because so much can happen before we go (July), and we know leukemia may get in the way, but I choose to plan looking forward and not talk about it much to dad, who doesn't want to get too excited until we are there and it is happening, which is understandable.  Chemo is expected to go up soon and that always kicks his arse for a bit...but that is life with a child with leukemia.  It is a fine balance to plan for life with that and life with six shared kids...but I got the nicest e-mail from him thanking me for making the plans so he could go and to meet his needs, which is the type of thing that makes all the work worthwhile.

As co-parents we definitely have wondered, but not out loud besides once, because it can get upsetting, if the ALL was there during this trip, and if so, how bad?  The official first symptoms came four months later, and the diagnosis 6 months later.  Keep your fingers crossed for this summer :).

Day 23- "Seek Wonder"

This view makes me seek wonder in many ways, as it is from the Pediatric Oncology Unit at JH in Baltimore.  I wonder everything from why cancer is so f-ed up with so few answers and so many questions and complications.  I wonder how families do it with no insurance or little support.  I wonder about the disparity in incomes in such a small area, Baltimore goes from poverty beyond poverty to excess beyond excess in a matter of blocks and minutes.  How does it continue to be accepted by so many people.?  How do you break the cycle of poverty?  I am forever seeking these answers and told that I can't save the world, but if every one of us sought to help one person break the cycle could we make a difference?  Problem is, too many people don't seek wonder that would be to the benefit of others, we are an egocentric world, many of us with our own problems that others can't see.  For today I am hoping these oncologists seek wonder to continue solving this mystery and find answers as to why we have a child back here admitted for the second weekend in a row, needing another blood transfusion, and hope that people continue to seek wonder for answers that will make a difference to others.  Peace xo.

Day 16- "Words to Live By"- Month 2 (a day early)

This post is coming a day early (it can make up for one of my day late ones...), because tomorrow I will be on the road for college visits if we are able to stick with Plan A, and a visit to a very special aunt (&, this song could apply equally to that branch of extended family, who is so far away but so near and dear to my life every day, they are my reason for Facebook and even Pinterest keeps me in touch with what is special to them), and I am thinking later today is going to be busy thanks to ALL and all that comes with it.

This past summer we purchased tickets to go see John Mayer, with all of the kids plus two significant others- ten in all.  It was a total chance, as we weren't sure M would be healthy enough to go because of the leukemia.  John Mayer is his favorite, as he has a love of guitars.  It was meant to be something for him to look forward to, as theoretically if all went as planned he would be well enough to go.  Well, it worked out, by about a day, relief of post chemo nightmarish headaches, and he could go He was weak, and he was tired, but he allowed others to help him along, from getting there in time to rest and sit pre-show, to using the customer service golf cart to take him to his seat and back.  His father got to give him this gift, and though the original plan was us 8, dad selflessly bought two more tickets in the lawn so that M could bring his girlfriend, so we used the other to bring a boyfriend.  We took the lawn so the kids could be together.  M was asleep not long after he left the parking lot, but giving him the gift of that night was awesome.  Phillip Phillips was opening.  Two shows in one!  I have always liked this song but it literally brought me to tears as I listened a little more closely to the words and thought about M and the other kids, and us as parents.  It isn't easy being a blended family with kids in four counties and 2 states, and with an 11 year span, but it works, and there are some people who don't see it as valid because we aren't married, but I would challenge them to spend a few hours with them and tell me they still see it that way.  As luck would have it, M has been hospitalized again, on Friday night.  The new daily pill chemo hasn't been friendly- they raised levels on some- and has taken the once a month theory of life will settle down to a whole new level.  This week sucked for him, and a challenge is always is it the chemo, is it run of the mill illness, or do I need to be in the hospital because it is the cancer?  Well, this time it is the cancer.  I know there was a transfusion last night.  Not sure what is going on yet, but hoping for the best and know that he is in the best place possible.  I hate that at 20 he lives in this fear and that is father is notified by a group text after they are already at the hospital, but it is what it is.  The words of this song remind me of this family, our family, who all live in different places but who pull together and on the good days just enjoy one another, and they are the words we are living by as we take this wild ride together and stick by him when it is at it's worst, by the other kids as they are in fear, by all as they simultaneously have triumphs to share amid the chaos that ALL has brought into our lives.  

"Gone, Gone, Gone"- Phillip Phillips

When life leaves you high and dry
I'll be at your door tonight
If you need help, if you need help
I'll shut down the city lights, 
I'll lie, cheat, I'll beg and bribe
To make you well, to make you well

When enemies are at your door
I'll carry you away from war
If you need help, if you need help
Your hope dangling by a string
I'll share in your suffering
To make you well, to make you well

Give me reasons to believe
That you would do the same for me

And I would do it for you, for you
Baby, I'm not moving on
I love you long after you're gone.
For you, for you.
You would never sleep alone
I love you long after you're gone
And long after you're gone, gone, gone.

When you fall like a statue
I'm gon' be there to catch you
Put you on your feet, you on your feet
And if your well is empty
Not a thing will prevent me
Tell me what you need, what do you need

I surrender honestly
You've always done the same for me

So I would do it for you, for you.
Baby, I'm not moving on
I love you long after you're gone.
For you, for you.
You would never sleep alone.
I love you long after you're gone
And long after you're gone gone gone.

You're my back bone, 
You're my cornerstone
You're my crutch when my legs stop moving
You're my head start, 
You're my rugged heart
You're the pulse that I've always needed
Like a drum, baby, don't stop beating
Like a drum, baby, don't stop beating
Like a drum, baby, don't stop beating
Like a drum my heart never stops beating

For you, for you
Baby I'm not moving on
I love you long after you're gone.
For you, for you.
You would never sleep alone
I love you long after you're gone.
For you, for you.
Baby I'm not moving on, 
I love you long after you're gone.
For you, for you.
You would never sleep alone.
I love you long, long after you're gone.

Like a drum, baby, don't stop beating
Like a drum, baby, don't stop beating
Like a drum, baby, don't stop beating
Like a drum my heart never stops beating for you

And long after you're gone, gone, gone.

I love you long after you're gone gone, gone.

A Good Day- Day 5, Month 2

"A good day" is a variable term to me, changing as my reference point changes.  For example, it is a no chemo day, so that is a good day.  No school today because of ice, so I know where my kids are at, safe and warm at home, good day. No school also means I can work on my endless list, starting with taxes and FAFSA, so again, a good day.  Yesterday, despite being sick and going to a needless training I got a lot done at work and felt like I helped someone, chemo and counts went well, and I got to spend time with my little dude (ok, he is 15 and towers over me by 4") working on this week's photography project (hint to parents, that is a good class to sign up for if you want to guarantee your teen to spend time with you); again, good day.  Got to cook and have all of the kids around for a few hours, takes good day to great day.  I sincerely believe a day is what you make it; a life changing moment for me was when I truly embraced that at all times I had two choices in how to react, and I learned to not be so impulsive, presume the best intentions and realize I don't know what people are dealing with privately at any time, so just trying harder to choose the positive choice as often as possible.  I really see that my son has embraced that attitude, and I think my daughter too.  I keep waiting for horrible teenage years, but really all I get is the occasional snippy teenage daughter attitude and nine times out of ten I can let it go and let her go be her snippy self.  I am not sure what a good day is going to look like next year when she goes to college- I hope it will be seeing her blossom and succeed and that I won't be so selfish as to miss her so much I don't have the best days I can; I am not a crier by any means, and I cry every time I think about her leaving.  At the same time I am so excited for her and going through this journey together has been brought many good days- acceptance letters, visits, talking about options. I am afraid for when she is gone and doesn't  have a good day and I am not there to help her, but I know that is part of letting her go and learn.

The dichotomy around here with regards to this "good day" idea is huge.  "He" says he won't have a good day until at least April 2016 when chemo is over and remission is confirmed.  I can't blame him.  He doesn't like to talk about it but I know it consumes him.  For him a good day is so different than what it is for me.  I have faith that one day he will be himself again, but I wonder, because there will be a forever fear of recurrence.  Some days I know that the best I am going to get out of him that he can call a good day is just chilling with me, often not doing much of anything...just blocking out the world.  At the same time, he can get so hateful toward everyone and everything that son with cancer or not, I tell him he is going to have to go be in his foul mood elsewhere, or I will go elsewhere, because it doesn't help, it isn't going to take away the situation, it only adds stress.

Sadly, my heart is breaking for a very special aunt, whose husband probably won't make it past this week, as well as my two cousins.  The way they put their family first is nothing short of inspiring, and I can't help but think that this generation of cousins is all going to be there sooner vs. later.  I am not sure what a good day is going to look like then, but I know it will be redefined.

May you find your peace in your heart and serenity in your life today...xo.

Currently Reading...on Day 27....

...my saved VRBO searches and airfares!  Got word today from the ALL specialist that we should go forth with our summer family vacation, no restrictions on flying!  That is a huge YAY for our family; as a blended family we have had our share of challenges, and one of the biggest was getting this particular child to be allowed to be integrated into our family, as his mother was against it and fought it regardless of legality.  "He" took the high road, which was so hard and so admirable, but it paid off; when his son turned 18 he started spending all sorts of time with us on his terms, including going on two vacations.  Then, we found out about the leukemia, which prevented his joining us last summer and limited where we went.  We weren't sure how it would work out for us this summer, and are so excited to start planning and so hopeful that his health will keep strong and this will be a great time as a family!

Day 21- "Reflections"

On this particular chemo day, when anyone would want to be cranky, he smiled, laughed & talked like nothing was going on. The perspective of what the girl next to him had been through was all it took. His humility & maturity are just incredible.

Revelations...Day 13

Test results are in

ALL revelation

Moved to Johns Hopkins

A year ago today this was our revelation after many ER visits, several doctors, and a long, long weekend of test after test after test.  The transition to JH was seamless and we will be forever grateful to the staff that worked with us at both St. Agnes and at JH, they literally are saving one of our children's life.  Don't ever be afraid to question doctors and ask for more answers, you are your child's advocate.  Peace xo.