Ayla update July 2012

Hi everyone!  I hope you all have access to air conditioning wherever you are!  Today is a hot one!

I jsut wanted to send an update out about our appointment that we had at Sick Kids in Toronto yesterday. 

We saw both the dermatologist and the rhuematologist.  They have both agree'd that the infusions that's she has been getting over the last 10 months aren't doing what they wanted. 

They think she is possibly getting worse in the tummy area.  Her fascia (layer under the skin) seems to have more inflammation there than in other part of her body.  Legs and tummy seem to be the area's where it's the worst.  Plus side is, she is growing like a weed.  Certainly catching up on lost inches and pounds!  That was something they were/are concerned about b/c the fascia restriction/tightness could inhibit growth.

So the next step is a broader spectrum oral medication that she would take 2x/day along with the injections we do at home.  The side effects of this medication are similar to those of the injection she's been getting for 2 years.  That said, they would be doing bloodwork weekly for 4-6 weeks, biweekly, then 6 weeks (which is what we do now). 

I have some research to do on the medication.  It's called MMF-Cellcept.  It's apparently been used to treat her disease (Eosinophilac Faccitis) in adults before with success. 

After about 2 months on the medication we would return back to Sick Kids for evaluation but likely will keep doing it for 4-6 months in hopes of results. 

Still the best hope is for her to wake up and have this disease gone, but we keep pushing forward accepting the path we are on knowing God is with us and with Ayla, no matter how long she has this disease for. 

He's given us much peace over these last few years and continues to do so.  Ayla is so amazing and only He could make her so resilient:)  She even smiled at a doctor yesterday! 

We were able to see Ryan's Aunt and Uncle.  His uncle is currently undergoing heavy radiation therapy at Princess Margret, which is right accross the street from Sick Kids.  It was good to see them.  Please pray for them if you have a moment. 

So far there is no movement on our house.  We have another open house this coming Sunday.  Hopefully we will all be able to be together as a family soon!

Thanks and i hope you all have a great summer!   

May 28, 2012

Hi everyone! 

Happy super hot May 28 to you all! 

I was looking at the blog i keep for Ayla last week and realized i haven't updated since the end of march!:)  You should know, no news is good news. 

 

I think i sent a breif email about some blood work issue's she was having about a month ago.  Those have since resolved themselves.  She did labs once a week for about 4-5 weeks and was off her medication b/c her liver was overfunctioning.  They still have no idea why, unless she was fighting some invisible virus.  Thank the Lord for no relapse and that the week she had to go back on her meds, her labs were totally normal!  My babe was getting really tired of all those pokes (as was I).  So we are going back to our 6 week labs.

 

Ayla is still having some nausea from her weekly injections (even with tummy pills), not to the point of throwing up anymore, but the following morning she is queesy when she gets to pre school, after driving in the car for about 40 minutes.  We think its a combo of already feeling a bit sick to her stomach and then motion sickness from a long car ride.  We are going to change the days and make sure the day after she gets her injection is a home day with not too much driving. 

 

She has 2 treatments in the hospital left for her experimental drug, June and July.  She's handling them very well and building up lots of beads for her beads of courage collection:)  We love all the nurses in peds days, they are amazing as well as the child life workers.  Just awesome.  I remember being so afraid of how she would cope with these treatments after being so broken, but God has made her so strong and resiliant!  We are so thankful!  Mid July we will head up to Sick Kids in Toronto for a reassessment to see how the experimental drug is working and to decide whether or not to reapply for funding and continue with them. 

 

This summer is going to be an awesome summer for Ayla. We can finally breath easier about her bone issues and no longer have to hold our breath for too long when she falls (like the other day when she was climbing up the sliding end of our backyard slide!!!!)  She is doing amazing in swimming lessons and loves to be outside so much. 

While i sit here and reflect on the last 2.5 years...God is so amazing.  I don't think i would have enough paper to list the miracles and great things he has done through Ayla's illness.  Two of our best friends were baptised this weekend...part of their story was watching our family cope through Ayla's illness.  God can turn terrible awful things....into amazing wonderful beautiful things:)  Praise the Lord.

 

Ryan is still working in London and it's going well.  His 3 month review is coming up this week, i'm pretty sure it's promising.  I think they are thankful to have him. 

We listed our home a couple weeks ago and have only had 1 person through, which is a bit discouraging.  We have an open house next week.  It's been a bit stressful trying to get stuff done on the house to sell when Ryan is gone all week and we only have weekends.  It means sacrificing family time when he's home to finish up projects...hopefully this weekend coming will be the last one we need to do that.  Please be praying about this.  We have looked into buying a house in St. Thomas, so i think that is where we will end up.  I like it much better than London itself. 

We are feeling very torn b/c we have connected and love so many people here in Winsdor.  It's going to be hard.  We are just praying for the Lord's guidance in this situation.

 

Anyways, that's all for now! 

We love you all and are so thankful for how you love and encourage us!

Lacy

 

Ayla update 3-30-12

So most of you know that we had a rough few weeks with Ayla vomiting for days and days after her weekly injections we do at home, and she lost a lot of weight.

After jumping through some hoops, i think we got it figured out. We were able to meet with her Rhuematologist last minute, the same day we were meeting with her "bone doctor" (endocrinologist) last week. She needs to be getting a certain amount of folic acid to counter act the side effects from her weekly injections. We have been giving her what they told us to 2 years ago, but apparently it should be 50% more. So we are going to try that for a few weeks, on top of antinausea meds and then do an experiment and take her off the antinausea meds and see what happens.

On a positive note: Ayla was discharged from endocrinlogy. As long as there is no more fractures and she doesn't go back on steroids long term, we don't need to see him anymore! Thank the Lord! Her bones are almost "normal". So we gotta just keep doing what we are doing. Calcium, vit D, therapy, and run and play and move lots to make her bones stronger.

Monday i took Ayla for her regular bloodwork she needs every 8 weeks or so. Wednesday, i recieved a call from the lab we get it done at as well as her specialist saying her labs were abnormal and to see a doctor ASAP. Her specialist is away at a conference, so i was able to connect with her secretary. It's Ayla's liver enzymes that are up, meaning her liver is overfunctioning. We were told to not give her her weekly injection this week, and no tylenol and retest on monday and have it sent "STAT". It's likely her medication that is doing this, it's always something they watch for. Liver and kidney function.

I'm not quite sure what this means, and will hopefully hear from her Rhuematologist early/mid next week about her lab results. The kicker is, when i took Ayla she was so angry to be getting bloodwork and it was comforting for her to know that it would be a long time before she would have to do it again....7 days is not a long time. She's going to be livid come Monday morning.

I'm a bit concerned about a relapse in her condition b/c she didn't get her treatment this week. Yesterday she was complaining of some stiffness. So we'll just have to leave it all with God and no He is in control of all this.

Something i read in a devotion earlier this week from "40 days with Jesus, Celebrating His Presence-" Day 1:

"...Sometimes My blessings come to you in mysterious ways: through pain and trouble. At such times you can know My goodness only through your trust in Me. Understanding will fail you, but trust will keep you close to Me."

I long to understand God's plan for our family and for Ayla as an individual. Sometimes i feel like it would make it all so much easier...if we just knew why. But then what would the point be? It wouldn't really stretch us as much as needing to trust Him with and in all things. It wouldn't really be that much of a light to others if we 'KNEW' or they 'KNEW'. We wouldn't really need to walk close with Him if we just 'got' it all...in fact we wouldn't really need Him at all would we? We would fool ourselves into thinking everything was about us...and not the Creator. Understanding....well, i guess it can be a slippery slope.

Proverbs 3:5-6

"Trust in the LORD with all your heart and lean not on your own understanding;in all your ways acknowledge him, and he will make your paths straight."

Something else that stands out in my head is a few weeks ago, some pastors, staff, and elders were praying over Ayla and our family because of the vomiting and what not she was experiencing with no rhyme or reason at the time (she didn't really throw up anymore after that); one of them mentioned that we could look back on this...all of what Ayla has gone through, and use it to remember what God has done in her and our life. That these memories would be like to stones that the Isrealites took out of the Jordan River after they crossed to always remember what God had done for them...for generations.

Joshua 4: 5b-7-"Each of you is to take up a stone on his shoulder, according to the number of the tribes of the Israelites, 6to serve as a sign among you. In the future, when your children ask you, ‘What do these stones mean?’ 7tell them that the flow of the Jordan was cut off before the ark of the covenant of the Lord. When it crossed the Jordan, the waters of the Jordan were cut off. These stones are to be a memorial to the people of Israel forever.”

Sorry for the lengthy update...i just had lots i wanted to share.

Ayla's beads that she got today. The hospital in Windsor adopted a new program from the States.

The two bigger colorful beads are for each 100 (so 200 b/c there are 2) pokes, procedures, surgerys, xrays, testing, home injections, etc that she has had in the past. Now we have a tracker so we can track what beads she will get. Makes it kind of fun, all the colors:)

The the small black one is for a poke today, and the small purple an infusion treatment. Each time she gets something done she'll be able to add certain colored bead depending on procedure. It's very cool. They do a similar thing with Bravery Beads for kids with cancer.

Lacy

Ayla update-results

I wrote out a whole update and then our power flicked off and poof...it was gone!

They decided to keep Ayla on the experimental medication for 6 more doses. They didn't notice a HUGE difference, but a bit, so they will check again in 6 months. If there isn't a measurable difference after that, then we think, regaurdless, we will take Ayla off.

It was a while before we heard back b/c the doctors had to apply for more funding for us, in order for Ayla to recieve this $1100/dose medication. Thank the Lord, the funding is given for 6 more compassion doses.

She goes in tomorrow for a treatment and then once a month for the next 6 months.

That's all for now! Her birthday is this saturday! She will be 4 and is super excited about it (as am i!!). She's happy and healthy and looking so forward to a fun birthday:)

Lacy

update 2-17-12

I'm begining to wonder if winter really is going to come this year...now i may be eating my words now that i've said something, BUT WHAT IS GOING ON!? We were actually in the yard playing driveway hockey with sweaters on earlier this week...bizarre.
The last time i wrote was almost 2 months ago, right before Christmas!
I hope you know, "no news is good news."

I figured i would write now to let everyone know that we are heading to Sick Kids on Monday for a few specialists appointments. The plan is to evaluate her to see if this experimental medication is working.
There was some misunderstanding between the everyone and the pharmacudical company. We all thought Ayla would be treated for 6 months, but it was 5 doses or 6 months. That said her 6 and final dose before an evaluation was supposed to be tomorrow...but it won't be happening.

If we get to SICK KIDS and they decided that the treatment should be continued, a laps of the week or so it will take for govt and pharm to approve funding, should not be a big deal apparently.
So Monday we will find out whether or not this medication is working. We haven't noticed a huge difference in the feel or texture of her skin, nor have her therapists but the doctors will be the judge.

One thing that a number have people have began to notice is how much happier she is! It wasn't long ago when i had a conversation with one of her therapist and something i had observed but never said out loud was brought up, "she doesn't seem to have any joy..." And that was the honest to goodness truth. We all knew it. But i'm happy to say that the overall consensus from teachers, therapist, family, and friends is that Ayla is a happy, fun, chatty little girl:) She's finally breaking out of her fearful shell and having joy! That will certainly be something we bring up at Sick Kids. Whether it's because she's feeling better physically, or if she's just finally healing emotionally...we don't know. But thank the Lord...because this is another miracle. My heart broke when i knew our wee girl had no joy...and my heart leaps to see that joy there! Finally!

Ayla's last treatment in January went horribly, it was the worst one...i would say since we first began our admissions over 2 years ago. Then, Praise the Lord, a nurse we have worked with before had just come on shift and came right in. She was so nervous and really wanted to get the needle in her first try. We all actually prayed just before she did it, and she got it! After 2 very long and agonizing pokes with a nurse that just would not say, "i can't do it," nurse Robin saved the day! Poor nurse Robin. She was shaking so badly she couldn't even tape up the IV line. We love her, she is so kind hearted:) It's so funny how quickly you can connect with people in the midst of pain...that's certainly another thing we have learned over the course of these last 2 years.

Ayla's 4th birthday is coming up on February 18th! I can't believe she'll be 4! We will be having a little celebration with her. I desperately want her 4th birthday to be joyful for her...and those that love her. I look back and don't have great memories of her 2nd or 3rd birthday. Her 2nd birthday...was a couple months after she became ill. She was emaciated, sad, in pain, immobile, she did not smile or laugh the whole day, presents and all. And last year, her 3rd birthday, she fell and broke her leg...for the 3rd time (the last time, thank goodness). So as shallow as it may seem, i really want her to just have a fun day. Not a big fancy, over the top, shin dig; but just the people close to her that have seen the miracles happen in her short life all together to wish her a HAPPY 4th birthday!

Thank you all for following my emails and updates over the last more than 2 years now. We are thankful for all the prayers and love and support. We will let you know what the outcome of Monday is.

I'm going to send you a picture of Ayla...she's ICE SKATING! Yes, you read that right. She's learning to skate...and loves it. I try not to cringe when she wobbles, but daddy is usually right behind her to catch her before she falls.

Blessings to all,
Lacy

Merry Christmas!
I think the last time i wrote you all it was before Halloween! Time flies when you are...um...alive i guess:)

Ayla has been sick for over 2 years now. This time 2 years ago we were amping up to take our girl in for a bone marrow draw to check for cancer. Many tests, surgeries, pain, tears, hopelessness, breaks (heart and bones), AND MIRACLES have happens since the beginning. We are here to say that God works in many amazing ways and we are so thankful for His promises.

Since i last wrote Ayla has had 2 more treatments (one of which warranted an infectious disease control room) and a Rhuematology appointment. Along with many other exciting things.

In November we had a 'possible' secondary exposure to chicken pox with the kids, which was why were were put in a "control" room for her treatment...it was rather boring b/c we (all of us) were confined to the room which means...take a deep breath...NO PLAY ROOM FOR THE KIDS. (Windsor Hosp has a good play room) Niether of the kids are vaccinated against it which isn't a big deal in itself, but b/c of the medications (immune supressents double duty with the new drug) it makes it pretty dangerous for Ayla to get it. It would warrant a 5 day hospital stay with immunoglobulin infusions. Praise the Lord they didn't get it:) (Truly an answer to prayer). Hopefully someday it will be safe for them to get it and we can get it over with!

We saw the Rhuem in London mid november. Ayla has grown a lot taller and heavier. So i think she's putting many minds at ease of the possible inhibiting of bone (limbs actually) growth. Her doc is happy to see the weight/height that she's gaining and how much happier she seems. She didn't notice any change in her Eosinophilac Facciitis, which i think she was hoping to see after 3 treatments. So we have 2 more to go (possibly 3) and they will reassess. This doctor is going on mat leave, so i'm really praying that we don't have to see someone new and have her assessment done by them! They are going to try and get us in to see the lead Rhuematologist at Sick Kids in Toronto for March (after her 6/7 treatment). We have seen him a couple times before, so i would feel better him seeing her than someone coming in clueless. We shall see. After the 6/7 treatment and assessment they will determine whether this experimental drug is working or not. If not, she will stop getting the infusions and we'll just continue as we have been with her home injections. If it does....then she will continue. Ayla's doctor shared this with us: at a rhuematology conference not long ago, Ayla's doctor met another doctor who had a patient (9 year old girl) that has EF, just like Ayla! It didn't deteriorate her as quickly and as powerfully as it did Ayla, but after 2 years of being on immunosupressants HER DISEASE DISAPPEARED! POOF! GONE WITHOUT A TRACE! It placed hope in our doctor about Ayla's situation, someday she may be perfectly well without a trace of this disease this side of Heaven.

We also have a Bone Mineral Density scheduled for March to follow up on the 3 broken legs and will meet with the endocrinologist shortly after.

The most recent treatment Ayla had this past friday. IT WENT AWESOME. You all know, Ayla has had a very difficult time (as well as many nurses) getting needles of anykind into her veins b/c of her disease. She has had much emotional trauma b/c of this. This past friday, PRAISE GOD, the IV went in perfectly! She didn't even shed a tear! I am pretty sure that is the first time ever (including almost all home injections) she has not cried for a needle AFTER OVER 2 YEARS! She even went and brought the nurse who did it a reindeer candy cane after, so she wasn't even mad at her:) That is a miracle in and of itself! Another wonderful thing that happened that day, was that their was an 11 year old girl, who saved her allowance all this year (and ask for donations from family) and donated $750 worth of toys for the kids admitted or in for treatments. So Ayla and Ezra got to pick something and they made little cards for whoever this kind little girl was:)

Ayla is doing very well physically and emotionally. Her teachers and social worker have just made a special chart/book for her with a list of emotions and choices for her to make that apply to every day. Often Ayla is very difficult to read/figure out. Proof of this happened today when her teacher thought she was clearly mad and she pointed that she was happy and wanted to play. Ayla is very verbal but holds back lots with other children and adults around. This will help them and us immensly!

Ayla just finished her dance class this week and if i can figure out how to load a video onto here, i will do so. (She's the one in the pink tutu/dress with brown running shoes and pig tails). She wants to take dance again after Christmas:)

We are doing okay. We continue to learn much on about the story we are written into. We are thankful for this story and although much pain and sadness has happened these last 2 years, we would not change any of it b/c God works in more awesome ways that we could ever dream.

Ryan is not working and hasn't been for a while...basically since my last update. He's trying like crazy and had many connections made, we are just waiting and praying that we see what God's next step for us is...whatever it may be. We would appreciate prayer for this if you have a moment to spare. Thank you so very much!

Merry Christmas to you all! I hope you all enjoy your time celebrating this special time of year!
Lacy

PS, i couldn't load the video but i included some pics.