Mom's Perspective

I decided that, although Matt is doing a fabulous job of keeping everyone updated, I wanted to write down some of my thoughts.  Partly just to get them out of my head...a little writing therapy.

This has definitely been something that has rocked our world.  Everyone in the house has had to adjust, but mostly Matti. It is indescribable really, how it feels to watch Matti go through this. As her mom, I would gladly go through it for her.  I really wish I could go through it for her. I wouldn't wish this experience on my worst enemy...watching your child suffer is heart wrenching.  It isn't fair.  She had gotten to a point in her schooling, with her talents, and with her friends that she was really in a good place in all ways.  She was primed and ready to head into her senior year and take it by storm. She had everything at her fingertips, until the cruel reality is it got ripped away from her...all of it . Yes, she has a good long term outlook, but it still sucks right now.  I really don't feel like sugar coating it at all. It sucks so bad, and I hate hate hate hate it. Then to top it all off, she had to have a hysterectomy, which honestly has been one of the hardest parts of this process. Yes, Matti knows she can still have children (obviously, she is 1 of 6 and the only biological child of the group)...and yes it's great that she has the experiences of our family to look to for guidance, and yes she is in a better spot than most 17 year old girls would be to accept this.  All of these things do not take away the finality of losing a part of you that culturally and spiritually you have been told your whole life is a HUGE part of being a woman, and that is carrying and giving birth to a child. There is grieving that is happening, and all of the well meaning comments about how "lucky" she is to have the family she does and understand that she can still have a family, really do not help or make it easier for her.

And of course, there is the ever looming "CANCER" word. This horrible disease that has taken so many people that Matti cares about and loves, now she has it. Now she has to fight it. It's scary and frustrating and stupid. Don't tell me that she is strong and God doesn't give you anything you can't handle...that's just dumb. First of all I refuse to believe that God GAVE this to her. I believe that sometimes things happen to us because we are just mortal. We have human bodies that are inflicted upon by our environment, or biology, or other people, and things happen to us for those reasons and NOT because God gives it to us. I believe that it is truly how we handle what is "thrust upon us", and how we learn to rely on God in our lives, that helps us deal with what happens to us here in our mortal existence. How do we make it through crap like this? We strengthen our relationship with our Heavenly Father. He gives us the STRENGTH we need to deal with trials in this life--NOT the trials themselves. SHIT just HAPPENS--as the saying goes.

Now, I do not want to come across as angry and ungrateful. Remember the beginning of this little entry? Writing therapy? That is really what the first of this was about. Let me be very real now about the love and peace that I feel every day in spite of what is happening to Matti, and to my family. Every time Matti is able to make a joke, laugh at herself, laugh at someone else, find beauty in her surroundings, meet other people who are going through something similar and relate to them, find strength from her friends and family, turn to God in prayer and know she can find peace--I know she is being blessed.  Every time she gets up and does what needs to be done, regardless of how crappy she feels, or how much pain she is in-- I know she is being blessed. Every time she is able to be with friends and family and feel of their love and support, or meet people who otherwise wouldn't have been a part of her life, or get opportunities that she may not have previously had-- I know she is being blessed. I know that we have been helped so much by so many people. Not only with the things that we can physically see and need, but more importantly, by the prayers and positive thoughts and energy and spiritual strength that we receive on a daily basis from all of our "supporters". Our family. Our team. Our friends.  The power of prayer is real; the power of friendship is real; the power of family is real. The power of God is real. There is no way I could function without these things. I have to have faith in these things, because if not, how would this constant ache in my heart ever be relieved?

So, for now I will be choose to be grateful instead of angry. Grateful for all of the helping hands. Grateful for family who help with my other kids while I am with Matti. Grateful for Matt and the friend and partner I have in him. Grateful for all of Matti's friends and all of the gestures of kindness and love. Grateful for all of the strangers who reach out to help and give Matti reasons to smile. Grateful that Matti and I have a lot of alone time, quiet talks, inside jokes, quiet tears, tantrums, hugs, comfort and peace.

Pain Is Your Friend

Anyone who has ever said that is an idiot. Really. I don't mean crazy in the head. I mean downright, inconceivably stupid.

Just as the pain from the most recent chemo treatment is working its way out (it peaks around 10-14 days), she underwent surgery yesterday. I flew up to Salt Lake to be with her.

From 8 am until about 10:30, when they took her back, we went through the endless repetitive question and answer session as each doctor and nurse who was involved came in. If you have not had this experience of which I speak, you are a very lucky soul who has never had a surgical procedure.

The procedure was done at the Huntsman Cancer Institute - which is just across the street from Primary Children's Hospital. This facility is extremely nice. It is very obvious there is a LOT of money flowing in for donations here. You can see how my accountant mind works, eh?

Well, Nicki and I waited in the waiting room, where people wait. Less than 90 minutes later, the surgeon came to see us to tell us that everything had gone perfectly. He was extremely happy with how the procedure went and she would be assigned the in-patient room soon and we could wait for her up there.

Once we received the room number, we headed up.

It is at this point that I would like to say these rooms are better than many hotels we have stayed at. First, we were greeted by this lobby to our room and one other:

The open space you see on the right foreground is the family suite part of the room:

This picture doesn't do it justice, but you can probably get the idea just from knowing it is there. There is a TV and a refrigerator and microwave off to the right. This is great for being able to have family stay together. Probably is not intended for a full family of all eight of us (although, I must admit we have had our entire family in hotel rooms smaller than this). But for a parent, or spouse, or whatever, I'm sure is the intent.

Not that Nicki is actually sleeping in here. She has to be in the same room as Matti, or she is not comfortable. She has been sleeping on that couch under the window on the left. Where she will be tonight, also.

Now, Matti had told the team in the recovery area that she was doing okay with the pain. But, she was either too groggy to know, or unwilling to share how she was truly feeling. Because when she saw us, she broke down in tears. It was like she could stop being strong.

She was in pain.

All that had been prescribed was the exact same medicine and dosages she has been taking every day through chemo. How is that going to help manage a trauma to your body, like having stuff removed from it, when you are already used to a certain level of pain medication.

It took several hours, changing medication and dosages, and the Pain Management Team administering a nerve block before it started to be manageable. She would have moments in between, though, if she could keep herself calm for just a few seconds that she would drift to sleep for short periods. Yes, she would wake up to and because of the pain, but if we could talk her through it long enough, she would drift off again - between the anesthesia remaining in her and the trauma her body sustained.

Here's what she looked like when we could get her to sleep again, my sweet baby girl:

The blanket is courtesy of her cousin.

She's been doing okay in the 2 days since. The doctors are letting her stay one more night, but she is most likely getting released on Friday. Then she waits up there until she is cleared to continue her chemotherapy.

More waiting. Ahhhh.

Just for fun, I thought I would add this picture from the room next to hers:
 

More Happy Moments

You take them whenever you can get them. So, Matti has been making the most of these couple of weeks.

This trip was partly business, since she was going to take a look around the campus of Northern Arizona University, as well as to meet with the Director of Choral Studies there. Her rock-awesome private voice teacher wanted her to check it all out.

But most of it was to just relax and enjoy the area, including Sedona. Most of you have already seen these pictures, but here is a taste of her trip:

Yeah, by the time they got in the van to head home yesterday, she was plum tuckered. I believe that's how you say it in Flagstaff. Vacations seem to take all we have when we are healthy and feeling good. It seems like I usually wish I had an adjustment period at the end of my vacation to rest.

Now, imagine how it feels for Matti. I can only imagine. But the picture above speaks volumes.

As noted before, next week she will be free from her hysteria when she has it removed. No more hysteria!!

That's right isn't it?

Two Weeks Off

And counting.

You know, it couldn't have worked out better for Matti with the timing of this break.

For Christmas, Nicki and I got tickets to 5 Seconds of Summer for Matti and Cassidy. The other 8,985,595 seconds were up to them (as if there are actually 104 days in your summer vacation - it's more like 80, which translates into almost 2.1 million fewer seconds).

It's some boy band from Australia and Luke is the cutest one, or something like that. I mean, what's not to like about this guy?

Anyway, with Matti's diagnosis in April, her ability to go to this concert was called into question. In fact, early on, we were under the impression that she would be in the middle of 6 weeks of radiation at Primary Children's. So the fact that she was going to be here in Las Vegas, really upped her chances of attending.

Then, with her most recent chemo treatment being 2 weeks ago, she was in a good window of physical strength to go.

And go she did.

You have to like her choice of shirts to wear to the concert, don't you?

What's more, she went with her sister and they had a great time together. Yes, they were home late. Yes their voices were thrashed when they got home from all the screaming because Luke was for sure going to hear them.

It's one of those moments that you are really grateful for in the middle of all the craptastic things she has to go through. Something she was really looking forward to for months and was able to go and smile and have fun and scream to Luke.

So You're Telling Me There's a Chance

This is the time when I tell everyone about that thing that we were having to contemplate and consider.  I made brief mention of it a few weeks ago.  I know you all remember. You know, the one that recapped Disneyland.

So, I'll get to that. Matti was up in Salt Lake this week. When she goes up there, she is receiving a cocktail of three (3) different chemotherapy drugs. There are two that are just pushes, including the vincristine that she gets every week down here in Las Vegas.

The pushes don't really take long: they access her port, insert the syringe and...push.  Hence, the name.  The cyclophosphamide takes longer and is administered through a drip. For those, Primary Children's likes to keep Matti overnight for those visits to monitor her.

As it turns out, the treatment plan actually calls for her to have a two-week break from chemotherapy treatments.  This was not something that Nicki or I remembered.  We just remembered being told she would have them every week.  So, another welcome reprieve - from that.  Officially, whoa, we're half way there.

In addition, from here on out, her treatment plan does not include the cyclophosphamide, which means no more overnight stays at Primary Children's.  The dactinomycin will be given every three weeks with the vincristine, with the vincristine being administered in the 2 weeks in between. Again, we didn't get a photocopy of the treatment plan, we just stared at it. Now, these details make for welcome surprises.

They will monitor her blood counts each week, as standard precaution to watch for enough blood cell production. They need to make sure her counts are steady and stable enough for July 28.

See, the doctors don't know exactly where the tumor originated. They can make educated guesses based on where rhabdo occurs in children Matti's age. They spoke to the doctor who found the thing, but for not being an oncology surgeon, Dr. Swainston did a bloody great job of removing all evidence of the cancer.

As noted before, there was no evidence in all the scans and biopsies taken.

But because they don't know where it started, they can't recommend for sure where to do radiation. Statistically, it most likely originated in the uterus or cervix. And Dr. Swainston confirmed he found it partly there.

I am just throwing out names of female organs that I have heard discussed with doctors. I have no idea where they are, exactly, or what it all means. But I know that the uterus is where babies grow. And if the radiation oncologist were to do radiation on the uterus, the tissue would be destroyed making the uterus nonfunctional. Plus, they don't know exactly where in the uterus to radiate, anyway, because of the previously mentioned efficient removal.

So, Choice #1 - hysterectomy. Not her ovaries, just everything else. Keeping ovaries means hormones are still being produced and...it's just good when a woman can keep her ovaries.

Choice #2 - don't radiate and preserve the possibility of bearing children in the future. Plus, wait for recurrence, because, as we were told in all of our preliminary consults, when radiation is not done with rhabdo, it almost always comes back. And that means starting all over with chemotherapy and anything else determined for the next time.

Matti is really not interested a recurrence and doing chemo again. Neither are Nicki and I interested in seeing Matti do it again. So, is it aggressive? Yes. But will it produce the best chance of no recurrence? Yes.

Matti knows it doesn't mean she can never have a family. Her 5 siblings are all adopted. She knows there is are perfectly acceptable and valid methods of bringing children into a family besides bearing them herself.

This week she and Nicki met with the surgeon who would be doing the hysterectomy. I participated on the phone. It was comforting to talk to him and hear the whole thing explained. We felt more at peace with the decision. One thing we were not aware of is that because she will still have her ovaries, she could have eggs harvested in the future and attempt to have biological children through surrogacy.

This was not even an option in our minds as we were all headed towards this decision. So, when she is married many, many years in the future, she will have this as an option if she desires. (Did I say many years in the future?  Many.)

There will still be radiation. But the plan is only two days (about two minutes each time) and the doctor will target a very specific area that will be left after the surgery very near the area where the uterus used to be attached at the bottom. Yes, I have trouble typing the words.

Laugh if you will, but moms talk about every anatomical part of their children. Dads don't really talk about their daughters' anatomy.

All this surgery and radiation does mean that the chemotherapy treatments will take a pause for another 3-4 weeks while her body heals. At this point, we are looking at her final chemo treatment being around the first week of November, rather than October.

Let's say it how it is, though, Matti is going to survive her cancer and the treatments and be able to live a long life. The battle isn't over, but the outlook is good. Doctors are all positive and we are too. But the fight still sucks.