Last

Last Friday Abigail had her final tie with cancer removed--her port. A port is a small nickel-sized device that hooks into the vein leaving your heart. It's used for easier access for blood draws and quick dispersal of elixir from heaven (chemo). 

 I was surprised how well she did. She's never even needed so much as a dose of Tylenol since. In fact, she did so well that we took her to Disney's Hollywood studios the next day. 

I don't know how much she actually realizes because while we tell her that there is no port and that it's all gone, She still has dissolvable stitches and a bandage on her chest.  Hard to be "all gone" when it's still there, right?

But the reality is that the rest of her family knows. It's finally starting to sink in that this chapter of our life is winding down. Don't get me wrong we're not out of the woods altogether with Abigail (relapses are still possible even if rare) and we are practically married to the oncology department at the children's hospital for at least another five years, but if all goes well the worst with Abigail is over.  Now, if we could just get Natasha to that point. ..

Laughing

I love how our twins always make me laugh!  The other day I ran upstairs to throw some laundry in the washer and dryer (I do have 7 kids) and I found that the girls had dressed themselves in new clothes.  I had to take front and back view pictures because I thought it was so creative.

Natasha (left) has a shrug on backwards over her shirt with pajama shorts where she has stepped through only one leg.  Its a little hard to see through the apron that completes her outfit.  Abigail (right) is wearing an old slip over her pajama bottoms, her older brother's socks, and a shrug that is only half-way inside out.  It's a lot less funny when you see the bedroom when they are done dressing themselves!

Tuesday

Tuesday was our big day for procedures.  Since Natasha was diagnosed, (7 months after Abigail) we had hoped to coordinate their care so that their chemo cycles were together.  We figured that this would be easier--like ripping off a band aid.  Our first chance to do this came in October, but, of course, Abigail was too sick and only Natasha had the LP (spinal chemo), vincristine (another chemo) and steroid pulse (5 grumpy steroid filled days).  This is medical talk for "Really Bad Week".  I was pretty excited to just have it all done at once and then over for 3 months.  My sweet husband took the morning off of work to be with us and it made all the difference.  After accessing their ports for a blood draw, the doctor came to examine them.  She was a new doctor that hadn't met us yet so we had to give her the run down.  She was a good sport about the fact that she had to check the dolls mouth and Strawberry Shortcake's mouth before she could look in one of the girls' mouths.  She had to do this with ears, stomachs, and hearts.  Eventually, Natasha just took her stethoscope and proceeded to finish the job herself.  I'm not sure the doctor expected my girls to take charge quite so much!  Because they had on their cute Dollie and Me outfits (a splurge even on clearance), it looked just like they were playing doctor to themselves.  I love it when they can turn something typically stressful into an adventure.

We got the okay to go downstairs to surgery and got to start all over again playing with a new set of people.  Abigail and Natasha LOVE new people and attention so it's fun for them to visit different places inside the hospital.  I was really excited that this time they actually let me come in and watch the procedure.  In the past I was only able to drop them off and then leave as they fell asleep.  I always wanted to be a doctor so this was fascinating for me to see.  I love that kind of stuff.  I was still able to join Josh in time for the recovery of the first girl.  I love that they are so peaceful when they sleep after anesthesia.  Peaceful isn't always the right word when they wake up... more like demanding.  Good thing Dad was there to dote on them.

We were told that the girls might act sleepy that day, but we knew better.  This is what happened when I took a phone call in the other room:

Yes, they have recently learned to open the refrigerator door.  Not really a skill I was working on with them.  I am just lucky that the lid was still on the chocolate sauce.  A few weeks ago I cleaned a whole can of soy sauce off the floor and my house smelled like a Chinese restaurant for two days!  Sorry for the mostly naked child.  She doesn't like to keep the same thing on for very long, and sometimes she just wants nothing.  This is when it's good that we live in the Sunshine State so she doesn't freeze. 

50/50

I think I have written this post a thousand times in my mind but I haven't been able to bring myself to actually write the words down.  The last post 3 months ago is about our sweet little Abigail's first hospital visit in Orlando.  She was there for several days and eventually on oxygen with the RSV when I started to see signs of distress.  I kept pointing out increasing oxygen needs and high heart rates out to my nurse.  I am sure she is trained to be calm and act like everything was under control, but it was starting to annoy me that Abigail seemed sicker and no one else was starting to panic like I was--and I am not too high strung with my girls anymore.  Finally, after a long afternoon of lethargy and respiratory distress, my nurse brought in the charge nurse and they discussed calling an ICU doctor to come look at her.  At this point I felt validated...and alone. 

I was on the phone when the doctor came in.  I was desperately trying to find someone to come watch my other 6 kids so Josh could come up to the hospital as I anticipated a move to the ICU.  I really needed him.  It was so hard not to have the ready support of friends, neighbors and family that we had in Utah.  We were just too new.  Finally, the father of my daughters' friend (we called EVERYONE) came over for a while followed by our then new friends Mckenzie and Ben (it was Ben's only night off that week--so kind). 

If I had been panicked by the thought of finding adequate babysitting, it paled in comparison to the panic that gave way when the doctor was finished.  He explained to me that Abigail was doing very poorly and would wear out soon.  Her little body was starting to give up due to exhaustion and that a plan to help her would need to be put in place.  His plan was to transfer her ASAP to the Intensive Care Unit where she would be put on a BiPAP machine.  It would breathe for her and allow her partially closed lungs to (hopefully) open up.  She would be watched for a few hours on BiPAP and then, depending on how she was doing, he expected her to need to be sedated and intubated for possibly a week or more.  I have no doubt my face registered the shock I felt.  Abigail has been on "forced oxygen" in the ICU before but it looks about the same as regular oxygen therapy because it comes through a nasal cannula. 

By the time that Josh got to the hospital we had just been moved up to the ICU and they were getting ready to hook her up to the machine.  I was so glad to have him with me.  Having the medical advances to save Abigail's life is truly a blessing, but seeing your child like this:

was just a little too scary.  She was given a 50/50 chance of survival by the doctor upon her transfer to the ICU.  At this point she had no immunity left.  Her body had nothing to fight with anymore because all of her body's natural defenses against illness were gone.  We called family to let them know and asked for prayers on Facebook.  Now we had a huge dilemma--who would go home to be with the kids for the night?  To complicate things, it was our daughter's 10th birthday the next day.  She had been struggling with feeling forgotten and overshadowed for months.  How could we not follow through with our birthday traditions and her party that had been planned for Friday night?  Josh insisted on staying the night so that I could prepare for the birthday.  It was so hard to leave her, and I struggled with guilt all night for not being there for my little girl.  My amazing friend Mandi dropped everything she had going that weekend and drove 3 1/2 hours to be my hero.  She and my friend McKenzie saved the day.  They helped bake an amazing cake, cleaned my house, and took care of my other children.  The party focused around a trip to epcot.  I was worried about being miserable and wanting to be with Abigail.  Luckily, we had a miracle that Friday. 

When the nurses went to clean and change out all the BiPAP equipment that second day, Abigail was left without the machine for a minute or 2 and her oxygen stats stayed high enough that they decided to leave the BiPAP off for a while to see what would happen.  She never had to use the BiPAP machine again!  The prayers of our family and friends had become her immunity and allowed her little lungs to open up enough to work correctly again in such a short time period.  She had to go back to oxygen and they kept her in the ICU for a few more days, but she made an amazing recovery.  We feel so grateful to all those who took the time to petition on behalf of Abigail.  I believe it made all the difference!  We had more than our fair share of angels at our home as well.  Mandi, McKenzie & Ben made sure my home & kids stayed in tact while our friend Morgan showed up at the hospital with Josh's favorite take-out and they goofed around like little boys until 3 am.  The sweet ladies my mom works with took over her shifts for a week and a half so she could fly across the country to help at our home.  That proved to be a tremendous blessing.  Abigail was finally released about a week after she entered the ICU. 

I was so excited to bring Abigail home so she could see her siblings again.  Sadly, Natasha hadn't been feeling well for several days and we ended up taking her to the same hospital a whopping 6 hours after her sister came home.  She was admitted that evening and ended up spending several days in the hospital herself with a virus that was not RSV.   It was seriously crazy!  Natasha's stay included oxygen but she never needed high levels, or ICU time, so we felt like her stay was a piece of cake.  I did have to post this picture: 

One morning "Nurse Minnie" came to visit Natasha.  She brought her a bag with some fun little toys and a stuffed "Dori."  To this day, Natasha still tells everyone she can about the visit.  It was such a special, personal thing that nurse Minnie would stop by just for her.  She showed everyone who came over for weeks her snapshot of them together.  You would think she was showing vacation photos.  She is now Minnie's biggest fan. 

We celebrated their release from the hospital by attending "Families R.O.C.K." weekend at Universal Studios put on by the American Cancer Society.  It was an educational retreat for families of children with cancer, but it was also very emotionally draining.  It ended on a Sunday and we checked out of the hotel ready for church.  I took the big kids and Josh took the little ones home.  (We didn't feel that the twins were safe to face the germs that come with public places yet).  That morning as I combed Natasha's hair, it started to fall out in chunks.  Again!  I thought that we were past the part where the hair falls out.  It had started to grow back and was a couple inches long again.  This shouldn't be happening--but it was.  I spent half of church sobbing in my car in the parking lot.  I'm not sure what was so upsetting.  She was pretty cute bald and cancer stuff was such a "normal" part of our lives.  I knew I was over-reacting but the thought of facing that highly painful 'hair loss' part of cancer again was so overwhelming to me.  

This started a downward spiral for me and for my husband.  We were like zombies just putting one foot in front of the other hoping that someday we could even HOPE again.  There were more tears shed in those months than in our nearly 13 years of marriage combined.  He was feeling the pressure of husband, father, & provider of a large family with children who would always be so expensive (worth it, but let's face it--expensive all the same) and wondering how to grow his law practice to cover the strain.  I was feeling similar pressures and started longing for my days without responsibility.  All I could think of was how much easier life was when I was single.  It was so easy when my world revolved around me.  There were no crying kids, dirty diapers or toy-filled family rooms.  For a while it was like a scene in Stephanie Myers book "The Host" where an alien entered my brain and took over my body.  I was totally nuts!  I just wanted to leave and make it all go away.  It was like the time I decided I would have my 4th child naturally and then labor got really intense.  I was in so much pain that I hallucinated and really believed that the pain would stop if I could just get off that bed.  (You should have seen Josh's face when I tried to climb over the bed rail!)   In both circumstances, it was agonizing!  On top of that, Josh and I hurt for each other and the pain we could see our spouse going through.  Josh was scared that I actually would leave.  We stopped sleeping more than a few hours at a time and would often cry together at 3 a.m.  We felt like big failures.  We could not see why so many hard things had happened to us in a short period of time.  We felt overwhelmed and "picked on" so to speak. We would hardly even talk to friends or family.   For all our education and training we just couldn't get our lives to work--like we were doing this "living" thing all wrong.  I won't speak for Josh, but I know that I personally felt cloaked in abandonment and loneliness.  It was like being in a dark tunnel with no light at the end.  I wanted to bust out the side. 

I knew I had to find a way out of this funk, but it was so hard when all my motivation was swallowed up in resentment, self pity and "what ifs".  I just couldn't see our silver lining because there were too many dark clouds looming around me.   The usual compelling forces were gone.  I even became numb toward my kids.  I know that this really doesn't adequately describe how I felt, but I think anyone who has had a truly desolate moment in their life will be able to relate to my attempt at explaining.  Before we moved to Orlando, I belonged to a facebook group for Utah moms who had kids with cancer.  They had recently kicked me off because of my move, but I remembered them talking about PTSD (Post-traumatic Stress Disorder).  Bless, bless, BLESS the Internet for being a wealth of information on this subject relating to parents of cancer patients!  As soon as we realized what we were struggling with and how common it was, we were finally able to start the healing process.  It has taken a couple of months, but we finally feel better than normal again.  

 Looking back, I hurt most for our children.  They had no idea why laundry was piling up and dinner was cold cereal  every other night. Their parents were grumpy, inattentive and dismissive.  Children are never as oblivious to our situations as we try to tell ourselves they are.  As always, the Lord sends heroes to save the day.  Josh's sisters Sally and Betsy (Liz) were ours.  Christmas was the farthest thing from our minds and something I am not sure we would have even been capable of at that time.  We feel so blessed for all those who so kindly contributed to our family's holiday.  I know that Sally spent hours putting together a Christmas that we will never forget.  Words are not adequate to describe our gratitude to those who have been so good to us throughout all our challenges.  It was an immense relief to have the stress of preparing Christmas alleviated from our lives at that time.   

In our journey, we saw a counselor.  After hearing our story and the many things we had been dealing with (in addition to the cancer) she told us that we "wrote the book on dealing with stress".  We left with an invitation to return, but only if we wanted to.  We had worked so much out already.  Although she was just joking around, her words did solidify an idea I had been toying with.  I am going to write our whole, huge, "you can't make this stuff up" story for my kids.  I hope that one day when they are adults dealing with some of the scars that come out of having the experiences they have with their sisters' cancer I can hand it to them and say, "Here, see another perspective too.  We all went through hard things."  I hope it will help them to see that it wasn't easy for any of us.  What I hope to be able to communicate to them is what I have learned from all of this--that 'difficult isn't always bad'.  Sometimes it's an opportunity to change into the person we wished we had known how to be before.  Compassion, selflessness, patience, and love are learned incrementally through experiences that we are privileged to have.  Each frustrating experience and challenging day brings us to a crossroad that will shape who we can become.

Yep, this blog post is really personal and it's not all happy.  But, sadness is a part of our voyage with cancer and I won't leave it out.  We lost our silver lining for a while, but I can accept that as a part of the journey.  We have come out the other side of the sadness and depression.  The world is just a little more vivid now.  My kids are more loved than ever and getting a little bit spoiled.  We've been organizing, crafting, and playing and getting along in ways we haven't for such a long time.  In short, we are all happier.  It's a good thing too, because tomorrow both girls are heading to the hospital for lumbar punctures (removing and checking spinal fluid for cancer and replacing it with chemo) and different but still more chemo elixir from heaven.  Followed by a week of heavy, painful steroids.  Ahhhh....going to be a really long week.



Hoping

We are still not on oxygen!!  This is exciting as Abigail has struggled so much in the past with her lungs due to a bout of RSV when she was only 8 months old.  The down side is that her immunity is diminishing so she could take a turn for the worse at any time.  She wouldn't eat this morning, but I'm hoping I just ordered the wrong thing. 

It's been hard to adjust to a new hospital and all the policies and rules that come with any new change.  Some things I totally hate, but others make a lot of sense.  I just hate feeling like a rookie at this stage of the game.  On the 22nd of this month a new children's hospital will open here in Orlando and then we will go there instead.  Crazy that it will be almost an hour away but we are anxious to see it.  Especially after what I've seen here.  There are advantages in living so close to magic kingdom.  I know the picture quality stinks, but I thought I would upload these photos anyway.  I was so impressed with this castle and beanstock room in the hospital, I had to share.  Plus, Abigail is asleep so I am trying to find something quiet to keep me busy;)

Abigail was admitted

Sunday morning Abigail woke with a cough like a barking seal. We figured she may have Croup. The rest of the day she seemed to be fine and the cough even disappeared. Late in the afternoon, she started to slow down and just wanted to be held. I held her on the couch and she started getting sleepy at 4:00, which is not a good sign. Soon after, she began to feel hot. Hotter than normal and hot enough to take to the hospital. Anytime either twin gets a fever of 100.3 or higher we have to take them to the local ER. So, when we took her temp. it was 102.5. Our friend Morgan and his three girls watched our kids and waited for a more permanent sitter to come over as Kim and I made our way to the hospital.

As they accessed her port (stick a big needle through her skin) this time with her screaming and saying "no more!", I thought to myself, "don't they have enough strikes against them? Do they really need this extra suffering on top of everything else?" It is hard to watch them go through this month after month and realize they still have a long road to slog down. I know we need to be positive about things but, sometimes it is just too much for too long. Yet as much as I wish and pray for it to be different, we are helpless to take this away from them. We must go through it with them. I have wondered about the purpose of suffering in our lives. It is awful to go through or watch. In the past my first reaction when seeing someone suffer was to look away, try to ignore it, or somehow try not to think about. Now when I hear about someone's tough situation or see them go through something difficult, my heart goes out to them and I want to run and help but, many times I find myself unable to help because of my current limitations/situation. And so, I feel helpless but, in a way, I know what they are going through. There are many out there that may appear to have it easy or that things are not too hard for them. I don't believe that it is easy for anyone. Through the things which I have suffered, I have tried to become more accepting and patient of people's "bad days" because I don't how deep some of their struggles really are and I don't want to be the person that adds more weight to their heavy burden.

Sorry, for the side bar....back to Abigail - I stayed with her last night and Kim is taking the shift tonight. Abigail's culture came back that she has RSV, which scares me. The last time the twinnies had it, their lungs partially collapsed and they required heavy intervention at the hospital. They have permanent scaring from that run in with it. We pray that she will get better soon and be able to come home.

We feel blessed that our family has the health that it does. We were brought back to reality yesterday by the story of a family that has had a sad turn of events. The family had been getting chemo for their 10 or 11 year old son and then just recently had to start treatment up again when the cancer came roaring back. The 11 year old was going through a rough patch when the mom, from dealing with the stress of everything her son was going through had a heart attack and died. The father decided to keep it from his son (he had two other kids - one had died when she was younger and the other child is fine.) until the son was through this tough part in his treatment. The doctors ran some tests over the next couple of days and realized that the son's cancer was terminal and that he didn't have much time to live. The father, after just losing his wife a few days earlier, sat down with the son and told him that mom would be waiting for him on the other side and that he didn't have much time to go.....I don't personally know the family but, my heart goes out to them. What a difficult situation to go through. I hope my girls make it, though I don't if they will. I pray for peace to be with that family - they need it! There is much to be grateful for!

"Yucky Pee" and "Yucky Poo"

This is a picture of the first day of school for the twins! Even though Tasha spilled milk down the front of herself while eating her cheerios, she wouldn't let us change her outfit. Abigail kept pointing to the wet spot and saying "Yucky Pee!" over and over while laughing. The twins have become obsessed with saying that something is either "Yucky Pee" or "Yucky Poo". That goes for people, toys, diapers, animals, spills, clothing or when they just excited about something!

Anyway, they were both extremely excited about school. They want to be like their older siblings when they head off to school in the morning. They are supposed to take the bus everyday but, it has not come yet. The school said it will take a little time to get them on the schedule. In the meantime, they wait every morning to go to school and call out for the bus to come get them.