Whew

We recently have gotten some really good news about both Aila and Stuart. Aila has been cleared to play with other kids and play in places occupied by a lot of kids. Yay! Stuart continues to be cancer free!!!! The lumps in his leg are scar tissue and though we still have some things to figure out as far as treatment goes, it's not cancer! We are so thankful and relieved but I find myself not as care free as I thought I might be.

Have you ever been in a car accident, not a really bad one but a scary one? There's the initial shock, then you look around to make sure every one is ok and you are so relieved when they are. Then you check for damage on your car, insurances are swapped, yata yata yata, you get back in your car and suddenly driving is kinda scary. You've taken the red pill, your eyes are open and suddenly there is danger all around you.

I'm super excited that at this moment in time all three of the Massies are in good health but I am constantly aware that it doesn't always have to stay that way. God and I have a lot of talks these days. Trust looks different, not a bad different, but I am definitely aware that though my good is in the picture, my happiness...my 100% happiness is not a main goal for God. And that's ok.

So rejoice with us. We are all ok. And pray for us, because we still live in a scary place. There are so many emotions I didn't account for in all of this but one thing remains constant, my hope is built on nothing less than Jesus' blood and righteousness.

1 Peter 3 Blessed be the God and Father of our Lord Jesus Christ, who according to His great mercy has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, 4 to obtain an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you,5 who are protected by the power of God through faith for a salvation ready to be revealed in the last time. 6 In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various [c]trials, 7 so that the [d]proof of your faith, being more precious than gold which is perishable,even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ; 8 and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory, 9 obtaining as the outcome of your faith the salvation of your souls. 

Eli El

This week is a big week for us. Today Stuart meets with his sarcoma surgeon for a pre-opt visit. Tomorrow Aila meets with her doctor to find out if we are done with treatments and if we are able to have her around a bunch of kids again and on Monday, Stuart has his biopsy to find out if the lumps in his leg are scar tissue or if his cancer has returned. In the midst of all of this I cracked my tooth and wouldn't you know it, that is what made me turn my face to the heavens and ask why.  

It's amazing how the little things are the things that can get to you. The moment I realized I cracked my tooth I had a little fit. Apparently I had my limit and God crossed it. So God and I had a little chat. I reminded Him of all the things that we are going through, of all the time I didn't have to go to the dentist, of the fact that Aila doesn't do well with babysitters, that I couldn't handle one more thing. And God, well he reminded me of a name, Eli El: My God is God, and to further the lesson, I am not God. The fact of the matter is that God can do anything he wants to do and honestly folks I have no right to question it. But heres the thing, he lets me. He knows my frame, he knows that I am dust and when He reminded me that He is God it wasn't in a way that put me in my place and told me to shut up, it was to comfort me. He knows what he is doing, He loves me, He is in control, He has a plan and He gladly gives me His strength so that I can handle whatever it is that comes my way. He is God I am not and that leaves me in peace. Fit over. 

So back to the actual big things going on. Our visit with Aila's ENT is hopefully going to be the last in a while. We are excited to reintroduce her to the nursery at church with the hope that Stuart and I will be able to attend a service together (we haven't in over a year) and that she will be able to play with lots of kids like we know she so desperately wants to. This has the potential to be a very good visit. Please pray that it is. 

Stuart's visit is a scary one. His surgery is next monday. We are very hopeful that the lumps in his legs are a reaction to the radiation and is nothing more than scar tissue. Please Please pray this is the case. We will be so relieved to hear that it is just scar tissue but at the same time, Stuart's leg needs to be cut open again, he has to go through the healing process again, he has to put off a bunch of things he wants to do like hike, and swim, and work out, and dance around with his baby girl, all over again. It's hard and it takes a toll on his emotions. It's a hard place to be in. 

Please keep us in prayer this week. I'll try my best to update quickly. 

Lumps and Life

I've been wanting to update you all for a while now with all that has been going on in the Massie home, but time never seems to allow it. So, I thought I would do an update now and let the dishes soak for a bit while I type.

A couple weeks ago we noticed 2 lumps on Stuart's leg around his scar. We were concerned so we made an appointment with the oncologist. By the time that Stuart was able to see his doctor there were three lumps around the scar and she referred him to a sarcoma specialist. We were able to get an appointment a couple days later and the sarcoma specialist sent Stuart to get complete body scans. After the scans were complete he went back to the sarcoma specialist but now had four lumps around the scar. The sarcoma specialist is confused, he cannot give a definitive answer for what the lumps are but the scans look clear. So we are thankful that their was no cancer found anywhere else in Stuart's body but we need to get a biopsy of the lumps. This brings you up to speed on where we are currently at in the process. We are waiting on insurance (there has been a rush request sent) to ok the biopsy and then an appointment needs to be made with a doctor in L.A. 

We get asked how we are doing a lot, and honestly the answer changes constantly and has many different answers at one moment in time and sometimes the answers conflict with each other. 

We are frustrated. We had finally gotten to a point in our lives where we were coming out of the sadness. Stuart was able to start working out, I was able to clean a little more and get into some what of a routine, and after a year of shifting sand, solid ground was beginning to appear...and then this. We are tired, both physically and mentally. Our precious girl is still not sleeping well and so a goodnights rest is nowhere in sight. We also constantly have to battle the "what if" thoughts and sort out which ones we shouldn't think about and which ones we actually should.  We are thankful. We have been blessed in so many ways through out this time and thus far as scary as it all has been we have been experiencing the best of the worst. We are scared. We are hopeful. We are shaken. We are steady. We laugh. We cry. We stare off into nothing. We read the Word. 

And in all of this, life goes on. Though sometimes it does add a bit of craziness to our lives, Aila has been a huge blessing in so many ways. Stuart and I cannot afford to wallow. Our happy little girl is constantly on the move and needs our attention and so her smiles and giggles drag us out of ourselves and soon we are laughing right along side with her. She is doing well after her procedure. It seems like she is reacting very well and while we don't know how many procedures are left we hope that there are not too many. 

And now for the pictures. If you are like me, then you have already scrolled down to see the pictures. The first one breaks my heart a little. Aila has just had her procedure done and I am by her crib waiting for her to wake up, but you can't keep this little one down for long. The next two pictures are of Aila watching the planes at the Chino air show with our good friends the Shackletons and waiting in line for her free comic. 

We covet your prayers and love the encouragement and kind words from you all. Please pray that the biopsy shows nothing serious and that Stuart's leg will soon heal. These lumps are painful and we would love them to be gone as soon as possible.

Procedure #2

Well, Aila had her second procedure done this last Thursday and things went really well. The doctor was very pleased with her progress and was able to treat 2 of the cysts in her neck. Since she didn't respond to verced the first time around she wasn't given any this time which made her wake up time so much faster. We left the hospital 4 hours quicker than we did last time!

We have to continue to keep her as healthy as possible as the cysts swell drastically when she is ill. This means no indoor play places, daycares or the like. Please pray that Aila stays healthy and that we are able to get through this whole thing with as little doctor visits as possible.

Hand Sanitizer Anyone?

We knew that things could get difficult if Aila ever where to get sick. We also knew it was impossible to keep a child from ever getting sick, so we waited and prayed and have tried to keep Aila away from things we knew had a higher risk of getting her sick.

Well, she got sick. For about four days she ran a high fever (we gave her medication but the fever would just not go away) and then when it finally went away, she got a rash. We went to the doctors and it looks like it was something viral that we just needed to wait out. So we did. Fevers are scary.

Then we noticed Aila's cyst growing. It's heart breaking to feel like you are seeing progress after a treatment and then see her cysts swell up even bigger than before, because she got sick. We took her to see her ENT and he is a bit concerned at the rate her cysts are currently growing. She had to have a camera put up her nose and down her throat again and the air passage is still clear, but the doctor reminded us that their main concern is her airway and that if it continues to grow we may need to rush to the ER and they may need to do a tracheotomy. He doesn't think it will happen but did find the need to remind us just in case it did. I hate this.

We are trying to move up Aila's procedure so that the cyst can be drained and the medication can be put in but it's not just a scheduling thing, we also have to make sure that enough time has passed between procedures, so we are still figuring things out. Please pray that Aila's cyst would not grow and while you are at it, pray that they start to shrink :) Our God can do great things.

So forgive us if we are extra extra careful with Aila until she is done with all of her procedures. I'm a little extra freaked out with what a sickness means to her. There will probably be a lot more hand sanitizer in my future and maybe in some of yours :)

In other news, I was talking with a friend at church and he asked how long it would be until Stuart would be considered cancer free. I told him that it typically takes five years and then I paused and realized that meant it was only four years away. Can you believe it's already been a year?! You guys have been walking through all this with us for an entire year! I feel like we should have some kind of party but I bet not even hallmark has a card for whatever it is I want to celebrate.

Thank you all for going through this with us. I promise, we do have happy times in the Massie home. Aila can walk now which is a lot of fun and she is starting to say more words. She is a very happy girl. She loves to have dance parties with mommy and daddy and is super silly. I am hoping to have some pics and videos of her being her crazy self soon :)

Update on Aila

Aila had another doctors appointment, this time with her vascular doctor, and it turns out we may not have as many treatments in our future as we had thought, yay! The last time we met with him he told us that since the cysts were not connected he would have to treat each one separately. We thought that this meant that he could only work on one every time Aila had the procedure but we misunderstood. In talking with him a little more he explained that Aila can only have a certain amount of medicine injected into her body. The larger cyst took the full amount of medicine but the smaller cysts may not, which means that he would be able to treat more then one at a time.  

We still do not know how many treatments it is going to take but we are hopeful that at the end of this year or so we will be done with all this mess. Her next treatment will be done some time in the middle of April. 

Thank you all for the prayers and encouragement. 

Lessons in Love

I'm not sure I have ever felt comfortable helping some one in need of comfort. There are so many blog posts and articles that tell you what to say and what not to say that I find myself scared that I may say something terrible or do something unwanted. I want so bad to help, to comfort, to make the load easier that at times I can freeze up and not do anything. I feel that this last year has been one big lesson in how to comfort and love well. My church, family and friends have been my teachers.

I had a difficult pregnancy and when Aila was born it was absolutely wonderful, then two weeks later Stuart was diagnosed with cancer. This was a lot to bear. I had no idea what I needed or wanted or really anything, but many of you took care of us despite that. We were given words of encouragement, maybe not all were perfect (I really don't remember any that weren't) but I do remember feeling loved that so many people had words at all. We were given meals. Some of you dropped off meals, which was perfect, and others of you stayed and ate with us, which was also perfect. Some of you watched Aila while we talked to Stuart's doctors about what came next, others cleaned my kitchen, and still others came over to talk and make me feel a bit human. We were prayed for by many of you, some in person and others took time through out their day to silently lift us up before the throne. Some people have consistently checked up on us and others have stayed up to date by reading our blog and facebook posts. And some one recently called me up and said they wanted to order a pizza for us and have it delivered to our place, I had never even thought of doing that for some one before! We are so thankful for all of you!

I am amazed how much it means to have people just be there for you. I am so grateful for my church that loves so well. Seriously church, you've got meal trains, baby help, and prayer down! and we know that we are so blessed to be at a church who knows who we are and how we are hurting and rushes to our side. We are so grateful to Blizzard friends! It's been something like 6 years since Stuart worked there and still we have friends that reach out to us, bring us meals, even though you don't live close, and give us words of encouragement. You guys are awesome. We have friends that we haven't seen in years that are praying for us and friends that we have known for years that we can count on in the day to day.

All of this has been a tether to sanity for me. I never knew how important it all was. My prayer is that if any of you are ever in need, that I can be part of a tether for you. I am learning that not every one fills every role but rather a bunch of people help out in different ways. I can tell you right now my strength is not in sitting silently but I can watch your kids, or make you a meal, or clean or figure something out that needs figuring. You all are teaching me that there are many different roles that are all so important.

It is such a relief to have you all by our side. Thank you for teaching me by your actions.

:) :( :) :( :) :(

It's been a pretty difficult week and yet we have so much to be thankful for, it's an interesting balance. A lot has happened so this is a long post. And let me apologize for the misspelling and bad grammar that I know is going to fill the page. I'm exhausted and just tried to spell drinking "dreanking" so please ignore all the mistakes :)

We'll start with Wednesday. Aila had her first procedure on Wednesday. She hates doctors and so even getting her vitals was a screaming mess. They gave her some medicine to calm her down but all it did was turn her into an angry drunk :( She still wouldn't let anyone touch her but she couldn't quite focus which just made her more upset. It was hard seeing our baby girl in such a state. When it was time to wheel her over to her procedure our poor baby was hysterical when the nurses tried to put her in her crib, so I had to climb in with her, and together we were wheeled off from CHOC to St. Josephs. The procedure went well and we were super relieved when the doctor told us she was awake :) but the cysts were not connected as they hoped so each one will have to have it's own procedure done at least twice, which means we have at least seven more procedures :(. It took Aila a bit before she was totally coherent. Both Stuart and I spent hours holding, rocking, and calming our baby girl down. All in all in was an exhausting 8hrs at CHOC. We are so thankful for the wonderful nurse that looked after us while we were there and are blessed to have a team that knows how to deal well with a baby :)

Thursday: During this entire year Stuart has had a test looming over him. He has been working on some certifications and this particular one requires a four hour test that many people spend 6 months studying for. Things have been a little crazy for us so Stuart hasn't had much study time. He has been staying up late every night for the last week studying like crazy :(

Friday: We notice something on Aila's leg. It looks like a scratch

Saturday: Thing on Aila's leg gets bigger :(

Sunday:  And bigger :(

Monday: Doctor's appointment for Aila. She some how got a random infection on her leg and after some screaming from my precious girl, it was determined she needs to go on antibiotics :(
Stuart also had his scans on Monday. We are anxiously awaiting for the results which we will get on Thursday. This time around Stuart didn't have to be injected with anything radioactive, so he was able to touch me and Aila when he got home :). Getting Aila to take her antibiotics was tough :( I feel like I leveled up in my mommy-ness as I cupped my hands to catch Aila's throw-up so that it wouldn't fall on the couch. She really didn't like it. We had to get her to take it, so we tried again, this time mixed with some juice. It took about 45 minutes of squirting just a little into her mouth while she screamed but we got it down :( :)

Tuesday: Stuart passed his test!!!! :) I am so proud of him!!! This was an intense test and he did not have much time to study. We are so thankful that he was able to pass. When medicine time came for Aila we mixed it with a little bit of juice and put it into a cup instead of having her take it from a syringe. She scrunched up her nose and flared her nostrils a couple times but this time around it was so much easier :)  

This coming Thursday we will get the results for Stuart's scans. Please pray that the scans are clear. Friday we have an appointment with Aila's ENT. 

One Year Old!!!! Happy Birthday Aila!

I can't believe Aila is One!!!

Our girl is a bundle of excitement!

She loves to dance and pump her legs and splashes like crazy whenever she is in water.

She has become quite the daddy's girl lately, which is super sweet to see. During the photo shoot she only wanted to be held by daddy and would not be put down.

She can stand on her own and is daring to take a step here and there

She has four teeth, two top and two bottom

We call her "Our Little Lady" because she always has one or both feet up in the air.

She signs, "all done" "more" and puts her little hands in the "I don't know" position

Her favorite song is the soundtrack to the credits of Avatar the Last Airbender

She is super smiley and loves to climb

Annoyed

After over a month of calling the doctors office and waiting for authorization to see Dr. R (the doctor who will be performing the schlerotheropy for Aila) we finally met with him today for a consultation. He told us a lot of things that Dr. P had already told us but added some new things, like the treatments will be 3 months apart instead of a week apart because of Aila's age. Which means that this could be a year long process instead of two months. We asked him when treatments would start and he said "as soon as we are able to get the authorization" I'M SORRY WHAT?! Turns out that the million of calls that I have been making only authorized us to see Dr. R for a consultation, in which basically he said "yup, she needs the treatment" and now we need to get authorized for the treatment!

Could you please pray that this time the authorization goes through quickly. We may still be a month or two out before we can even start this thing. In the mean time we are monitoring Aila's breathing and praying that her cyst doesn't get any bigger.

Dr. Visits

Today both Stuart and Aila had doctor appointments.

Stuart had a check up on his leg with his radio-oncologist. Basically the Dr. looked at his leg (things look normal) and told Stuart to get another MRI to make sure things are going the way we want them. Stuart is already getting a CT scan in early February so the MRI is scheduled for the same day. These appointments are a constant reminder that though things may feel normal, they are not.

Aila had a check up with her ENT. Aila has been sick for about a week and has started to snore when she sleeps. This could of course be totally normal, but it could also mean that her cyst was growing into her air passage, so to the doctors we went. Poor Aila is so afraid of doctors now. She used to be completely fine but now when she sees Dr. P, who happens to be an amazing doctor, she starts to freak out, and this appointment gave her even more reason. To make sure that there wasn't any blockage, the doctor had to put a camera up Aila's nose and down her throat. Aila was terrified. As soon as the doctor picked up the tube (it was super skinny) she turned and faced me and was clawing to get away from the doctor. It was difficult to pry her off of me and turn her around, tuck her legs in between mine and hold her hands down while a nurse held her head. Everything is fine, and honestly about 5 minutes after the procedure she was calm and a bit smiley. The doctor asked if he could take a picture of Aila's neck for his students. I said that was totally fine so he left to get a camera. When he came back, Aila took one look at it and started freaking out! He couldn't take the picture because she was thrashing and so scared. It made my heart so sad to see the fear that has entered hers, especially when I know she still has so many hard visits ahead of her.

It's so hard to see your baby go through things that would even scare you. I would be scared to be in her shoes and yet here she is, only 11 months, going through more medically then I have ever had to go through. Today has been a bit draining.