It's Been A While

   

Well hello there, its been a while.

Lots has happened since last I wrote and like you'd expect life has been eventful.

Where to begin......
The little boy that joined our family by surprise in 2014 is now legally ours and is ten years old.
The combination of being on the severe end of the autism spectrum, seven years of questionable upbringing and a swift switch from one family to another has made him a challenge to parent at times but we want the best for him, we want to see him flourish and bloom and so even though some days can be frustrating we push on and strive for happiness and success. We know that its obtainable. Looking back we can see how fantastically far he has come but sometimes it feels like a raindrop in the ocean.

In December 2016 we welcomed a little GIRL from our twenty first embryo transfer!
Beau is now a plump and silly nine month old. She really is such a wonderful addition to our family and she has such a special bond with biggest brother Nick. With there being 20 years between them I was worried for a minute, especially when he initially wasn't thrilled with the news of another sibling. Who could blame him, he knew he would spend a large portion of his time correcting people when they assume he is her dad and I am his girlfriend (awkward!)

During my pregnancy with her we had planned to bank her cord blood just in case it would ever be needed but a week before her birth Nick reached his five year remission anniversary and was considered CANCER FREE! Oncology suggested that banking the blood on the chances that Nicks cancer would come back were less than 3.5% and it would be an extremely costly waste of money. I decided not to think about the unlikely, to focus on the positives... my son was cancer free and I was having a baby within the week. If only I had made a different choice. If only I had followed my gut. If only I trusted in my belief of taking the path of least regret.

Less than three months later Nick began talking about symptoms reappearing, knowing that his anxiety tends to sometimes get the best of him I would reassure him of the odds, of the purpose of lymph nodes and their role within the body. One day he came up to get some orange juice from the fridge in nothing but his long johns and I noticed how thin my child was looking. Three point five percent mom.... three point five percent, he must be thin from the months of athletics in college and the weekly martial arts classes - yeah that's it.
Then I got a text,  mom I dunno what happened but everything went dark and I fell.  
ENOUGH WAS ENOUGH.

I emailed his oncology nurse and asked for a quick check up.
Everything looks good, nodes don't feel enlarged but lets just do a CT scan to make everyone feel better. Fast forward to a couple days after the CT scan and I get a voice mail Hey guys can you give me a call back, we got Nicks CT report and we need to chat about next steps. That's voice mail code for brace yourself, everyone knows that there wouldn't need to be next steps if everything was normal.

Many doctors later, many biopsies and tests later and we got the official news. Less Than Three Point Five Percent and Nick fell right in it. Treatment would be different this time, Nick would be an adult and the protocol much harder. Because he'd already received chemo and radiation in the past, this time he would need something called salvage chemo and hopefully autologous stem cell therapy (more on this in a future post).
Nick was angry and rightfully so, I was angry, everyone who loved him was angry. This wasn't supposed to happen again.

Nick has now completed two cycles of GDP protocol chemotherapy and we are currently waiting for his body to recover before a CT scan is booked and we have our team meeting about next steps. While we wait I have the job of injecting my child daily with brutally expensive medication in hopes of keeping his immune system at a level that will keep a minuscule infection from being extremely problematic. He doesn't like getting the shots, I don't like giving the shots but we both know that they need to be done and so we approach them with humour, Welcome to your spa treatment Nicholas, would you like the batman band aids or the extra sticky brown plastic ones? Those ones come with a free arm wax ;)

Thirteen

Today my husband and I are celebrating our 13th wedding anniversary!
In a world of what seems to be disposable marriages we are proud of how far we have come.
Its not because there haven't been struggles - oh boy have there been struggles but its because we refocus and remember why we started. We remember that we wanted forever, that we wanted a different ending than both our parents had. Over the years there have been many stumbling blocks, we face challenges daily that statistics show frequently end marriages. We have had miscarriages, infertility, adoptions, a child with cancer, a child requiring multiple surgeries and needing daily accommodations, three children on the autism spectrum, we have each at times struggled with insecurities and bouts of depression and we have not always treated each other with as much respect as we should, we've said hurtful things and even done hurtful things, we are human and flawed but through all of this we have learned things too. We have learned that we are different individuals and we have different expectations and love languages. Its taken a long time to learn the secret codes of each other, to realize that we aren't mind readers and that we both must speak up to be heard. Its like a dance that requires a lifetime to perfect. If we'd walked away before we would have missed learning the moves that make the dance our own. We're a work in progress, we are two good forgivers, two people that strive for improvement, two people working towards the same goal, two people who have learned that appreciation goes a long way and two people who want to create a life together that makes our children want to follow in our footsteps. Most importantly we are two people who know that despite the old saying marriage is not 50/50 its 100/100 and both people have to give their all if its going to last a lifetime. Every year is a milestone and we are excited to see where the next year takes us.

Fingers Crossed

Last week I went for my WTF (what the f*ck) appointment with my RE. His jaw almost hit the floor when I told him that we are going to move forward with IVF #5.
I'm sure he thinks I am nuts, he pretty much said so...  "you have done so much, why not be finished" he then also brought up using a surrogate and he thinks I am crazy for declining. Its just not the right choice for me, I want the whole package, I want the pregnancy and the baby. I know myself well enough to know that I am going to be sad and resentful the entire time a surrogate is carrying our baby, wishing that it was me instead. Truthfully I don't even think that I would need a surrogate, I think that with the introlipids and better quality embryos I will be able to avoid another chemical pregnancy and have it be the real deal. The plan was to save for the next little while and do the cycle in the spring but the doctor let me know that if the IVF OHIP funding starts on schedule in November that I will be able to use the funding and so we can cycle sooner than expected - it was a great surprise since I didn't think that I would be able to benefit from OHIP since I'd had so many previous failures.
Now I am back to getting my body into the best shape that I can by the fall. I've started taking CoQ10 for egg quality and my metformin to maintain my blood sugar. I am also back to eating paleo/keto and working out. Its insane what all the medications and the stress of cycling can do to your body.
I think that the next few months are going to go by quickly, summer will be here before we know it and we have big plans for some relaxing in the sunshine not to mention a whole bunch of birthdays, once September comes its back to school and then Halloween is here. I'll just be keeping my fingers crossed that the funding actually happens and nothing delays it. There are a LOT of families that are crossing their fingers for the same thing.

Almost Success

Another cycle has wrapped up and I have to admit that this has been my roughest one yet.
I was scheduled to go into my clinic 10 days after my transfer for my beta but by day 9 I was out of medication and truthfully I was just over it. I had been testing negative on the First Response tests and I was sure that it was over so I popped into the clinic a day early, while I was there I had them run my AMH which is the test to determine your egg supply.  This would be good information to have moving forward since at 33 I am now much older than 18 when I started this journey.
Later that day I got a phone call from the nurse, my beta had come back at 3 - technically negative because it was under 5 but because I have never had a beta over 0 (with the exception of my pregnancy with Maxwell) they wanted me to continue on the medication and return for another beta on Monday (day 13 past transfer). It was a long shot, it would be a true miracle if something came from that beta number but I decided to follow their instructions. Imagine my surprise when the following day I started to get a faint positive on the tests at home. By Saturday night I was getting a second line that was visible to even a non-POAS experts eyes.
Then it happened, I let myself believe it, I let myself believe that I was newly pregnant, I calculated my due date - December 27th, I debated about whether I wanted to find out the gender, I bought into the possibility that this could be our miracle.
Sunday morning my test looked lighter, I didn't panic, I thought that maybe I'd drank too much before bed but by Sunday night the second line was almost gone and I broke.
I sat in a bubble bath and cried until my body ached, this was new.... I never cry with failures anymore. I dried off and went to bed.... cried myself to sleep.
I woke up and tested again to prepare for the beta, stark white no sign of a line.
Puffy faced and red eyed I went to the clinic and got my blood drawn, talked to the nurse about the positive lines and that while I was sad I was also hopeful because it clearly showed that this new treatment had indeed worked. While I wouldn't be taking home a baby I perhaps now have the key for the next cycle and now I didn't think that PGD testing would be needed. My only hope now is that the blood work was elevated enough to confirm the "success" to the doctor since he was pretty reluctant to do it in the first place. I would save my pennies and plan for IVF #5 that's when the nurse gave me the news, my AMH results had come in and I now have low ovarian reserve, basically I am running out of eggs. When this is the case time isn't a friend and the clock seems to be running on fast forward. Do I even have a year to save without costing myself the loss of the eggs that I still have?
Hours later I get "the" call from the clinic, my beta came back at 3, it had dropped back to where it had started and all we now have to show the doctor is the pictures of the positive test. Will he agree to do the therapy again? Will he refuse and cause me to switch clinics? Will I decide that enough is enough and walk away? I don't know.... what I do know is that failure hurts less than almost success but there is no sense in wallowing in the pain. Time to dust myself off and move forward.

Lucky Day In A Busy Week

This week has been a busy one so far, my body decided to somehow skip a week in my cycle and I ended up having my embryo transfer done on day 9 which is the earliest that I have ever been ready for transfer. The day was hopefully filled with good luck because it was also my oldest son's 19th birthday - HOLY COW he is now NINETEEN!!!!
That blows my mind, blink and they grow and I am not at all prepared for it.
I am now 2dp3dt (2 days past a 3 day transfer) I have done everything that I can to improve my odds. This cycle I have done a uterine biopsy, steroids, blood thinners, intralipid infusion, neupogen injection, metformin and assisted hatching. My RE said the only thing left to add is prayer. I am trying to focus on the fact that I have given these little balls of cells the best possible environment that I can for them to nestle in and happily grow. There really is nothing more that I could have done. I wont lie the negative thoughts do creep in, I do find myself thinking about the fact that I don't have anymore embryos frozen and if this fails it will be another year of saving and waiting only to go through it all again with possibly the same results. When those thoughts sneak in I remind myself that its only 365 days, it will give me time to return to a more stable fitness/health routine, to maybe take a weekend away, to do some fireside socializing and catch my breath from a year that has been wonderful but certainly with unplanned aspects (like becoming the parent of a 7 year old on the severe end of the autism spectrum).
I am a realistic thinker but I do always seek out the silver lining. Just to be on the safe side though I think that I will pray that I wont need a silver lining this time.

Back In The Saddle

Last month I started prepping for the transfer of my last two frozen embryos.
I again cut out caffeine and have tried to get more rest, since I had recently done a D&C my doctor and I decided to do a biopsy instead as its less invasive.
This time around I also did something called intralipid infusion. Intralipid infusion therapy is a treatment, which is administered through an IV drip made from soya bean oil, egg yolk, glycerin and water. Intralipid Infusion therapy provides the body with essential fatty acids that help to lower the activity of Natural Killer (NK) cells. Natural Killer (NK) cells in women can cause the body to react abnormally to an implanting embryo, treating it as an invading cell and signaling for the body to attack it.
I had brought this up to my doctor before however he is an old school type of guy who likes to stay nicely within his tried and true comfort zone and therefore he wasn't very open to the concept.
Recently he began having another doctor working with him on Mondays and I just happened to end up in the clinic with her. We chatted about my history and with her fresh eyes on my file she suggested Intralipids. My old school doc reluctantly agreed and gave me the go ahead. I will be the first patient of his to have this treatment. While my hope obviously is that it works and I get pregnant I am also a little bit hopeful that if he sees it being successful for me after so many failures then he will be more open to the possibilities of treatments that sit outside his comfort zone and other patients who have repeat implantation failure may benefit. 
Today was my infusion and it was long but a piece of cake, I brought my IV bag of intralipid to the larger clinic where my embryos are stored and paid them $300 to fill my veins with what looked like bright white milk.
Seated in a recliner with a hot pack, blanket and can of ginger ale I got comfy and watched Netflix on my Ipad for four hours until my infusion was complete. I felt a bit nauseous but I think that was from skipping breakfast. 
I'll be back to my clinic in two days for blood work and lining check. The party has officially started.

On To The Next

After four negative tests to double check the weird maybe positive ones that I had gotten I went to the fertility clinic for an early beta which came back not surprisingly at 0 - failure again, I wish that I could say that I was surprised.
While there we sat down and had a WTF conversation that pretty much everyone has after a failed cycle... What The Fuck happened and what should we do next.
We still have two frozen embryos that we are going to use right away and then we have decided that if that cycle also fails we will do another fresh IVF cycle with PGS.
I am conflicted about my thoughts on this but I have given it a lot of consideration.
In the end there are 3 possible outcomes

1. We transfer genetically sound embryos and become pregnant

2. We discover that all of our embryos are genetically compromised and I have an answer for all of my failures which I think is a huge part of my issue with moving on from treatments.

3. We transfer genetically sound embryos and I still don't get pregnant at which point I must walk away knowing that I did everything within my power to become pregnant and it just wasn't meant to be.

In my opinion any of those three possibilities are worth the $15,000  that this will cost. Of course its my hope that my last two embryos work and we don't need to move on to another fresh cycle but I feel much more relaxed and at peace simply having a back up plan.

Now I am just waiting to call in "day 1" so that I can start the process for the next frozen transfer.
I literally have all my eggs in one basket.... no pressure ;) 

What is pre-implantation genetic screening (PGS)?

PGS (also known as aneuploidy screening) involves checking the chromosomes of embryos conceived by IVF or ICSI for common abnormalities. Chromosomal abnormalities are a major cause of the failure of embryos to implant, and of miscarriages.