10/10

The phone call we've been waiting for for 8 weeks finally came this afternoon..

Emerson was matched with a 10/10 donor!!!

This means that all 10 of the 10 proteins they need to match were perfect for him increasing our odds of a successful transplant. There is still a chance of things going wrong and the transplant not taking but the odds are much less.

We have a meeting with our bone marrow transplant team next Tuesday. During this meeting they will go through the process and explain which chemo drugs they will use, side effects, and what we should expect going forward. Basically they will answer everything we have been wondering, worrying, and googling answers to.. They will also give us a specific date timeline. During the call today she assured me that she thinks we will be admitted within the next few weeks to undergo chemo. This is much quicker then we were expecting because our last conversation with our Immunologist we thought it would still be 4-6 weeks once we found out.

After receiving the call I broke down.. I thought I would feel an enormous weight lift off my shoulders but I didn't, I almost feel worse. I was so happy and so sad at the same time... I am so thankful we were able to find such a perfect match but with this came the reality of what we have been preparing for. Our hardest part of our journey is in the near future. Emerson has the battle of his life ahead of him. I know he is ready for it. He is a fighter and the strongest person I know. He is my inspiration everyday and I know he will make it through this next course and overcome it like a champ. Its even harder now to try and prepare ourselves for this because Emerson has been so healthy. He is getting stronger everyday and acting like a one year old. Its easy to forget that there is still something so wrong with him when he doesn't act like there is and you can't see it. I don't want to put him through any more pain.. I don't want him to have to go through this. I wish there was a way I could do it for him. I know that this is something we need to do to make him better but it doesn't make it any easier and it will not take his pain away. I pray that he does not get all of the nasty side effects that go along with chemo and that he recovers quickly so we can go back home.

I cannot wait for the day that this all feels like a bad dream..

Thank you to everyone for your continued support and prayers.. We will need them now more then ever to get through the next chapter of our journey.

D

Overdue

We have now been home on pass for a month! I had to count back twice because I couldn't believe it..  4 weeks with no infections!

We've been coming in for checkups/blood work twice a week (some times more). His hemoglobin has remained stable since our last admission and is tolerating weaning the prednisone (a steroid that suppresses his confused B cells). We've had to TPA his lines again last week because they were having trouble drawing off blood. The TPA was a huge success and both lumens now work and are not positional at all (so far.. fingers crossed they stay that way). We were told today that if his blood work is stable again that we can go down to one visit a week, Whoop! This means less chance of infection for E and more free days to be a little boy :)

(Emerson was surprised with a birthday present from aunit 2 at our appointment today- this is a such a wonderful hospital!)

Donor update: We are still waiting to hear about news of a donor. They think it will be soon (they always say that..). They have run high definition screening on a couple matches that came back good! That means that there are potentially two perfect matches for Emie! As long as the matches agree to donate. Every time I think of the donation process I get choked up. It is truly a blessing that they have programs like this in place and that there are so many willing people. I cannot stress enough how grateful I am that someone is willing to give my son a second chance at life. They truly are a hero because without this transplant he will die. I don't know how I will ever find the words to truly thank that person. There is nothing I could do or give that would be enough. I guess I will have a year to sit on it and think something up :)

Once we have a willing donor they will give us a time frame as to when everything will happen. There is a lot of organizing that needs to take place in order for it to run smoothly. Our doctor told us that once notified the transplant will normally take place in 4-6 week. This will give us time to get any other testing done Emerson will need. So far he has had his ears and eyes checked, both passed with flying colours. He will also need a 12 lead ECG (testing his heart) and a CT scan of his organs. These need to be done within 30 days of the transplant. They also have to organize when the donor will donate because once they go in they have 48hrs to give the stem cells to Emerson. Prior to this we will need to have gone through chemo. This is partly why it takes so long to be notified that we have a donor because there is so much organizing that needs to take place first. That being said it does not make the wait any easier..

Last week they were granted the funding we need to run a more detailed genetic screen on Emerson. So far all of his tests for SCID type have come back negative meaning that he is not one of the 14 most common types. This is important for our family because it will determine if we will be able to have future babies naturally. It also will determine if our other family members will be able to have babies without worrying.. These tests will not come back for 6-8 weeks.

It has taken me so long to update the blog because things have been stable and we have had such a happy busy boy at home. Writing these blogs brings me back to reality and the reality is Emie is still "sick". At any moment he could catch an infection that could potentially kill him. The fear and sadness is always lurking and the smallest things bring them up. I haven't wanted to acknowledge these feeling by writing a post but thats not healthy either. So I am happy that I finally sat down and wrote a post. As hard as it was it feels much better to get the emotions out and cry a little.

Emerson turned ONE last Wednesday! We had a really good day :) We started off with breakfast and balloons. Went for a walk after his nap and had a mini photo shoot with his birthday crown. We played outside and then JP came home from work. We organized a time for all our family to FaceTime while Emerson opened his presents. I am so thankful for modern technology! He was so excited for every single present! After that we had corn on the cob (Es favourite!), ribs, and macaroni salad. We finished with his cake smash. He was so excited for his cake. He only had a couple bites and made a mess with the rest. He's started shoving everything down his crotch in his high chair.. so his entire cake was smashed down there. It was really a special day and I'm so happy we were able to spend it at home.

Please keep praying that Emerson finds out about a donor ASAP and that his health streak lasts until we have to go in for the transplant. Thank you to everyone for the words of support, xo.

I hope my next post is about our DONOR :)!!

D

A little bit of "normal"

GOOD NEWS! Both of Emersons lines responded to the TPA and we were able to draw blood back off of both lumens. We've been sent home on pass until tomorrow. Our Immunologist and Hematologist are meeting with hospital management to see if there is a better way of allowing us to spend time at home while Emerson is feeling a bit better before transplant without wasting money on keeping our room on unit 2. I'm eager to hear what they have come up with. We had our clinic visit on Monday and they were able to use his line for drawing off his blood work. His vitals were normal and he's been feeling/acting way better since his transfusions and new medication. Our Immunoogist let us know the bone marrow transplant team would be connecting with us in the near future to discuss the process and how to prepare ourselves for it. I have a huge knot in my stomach thinking about it. She also told us that once we find a match we will have a million appointments we need to get done that will test Emerson's organs to make sure everything is functioning properly before we go ahead with chemotherapy/BMT.

Our first of these appointments is tomorrow to test his ears. It's common for SCID patients to need tubes put in their ears because of fluid retention caused by continuous infection and runny nose. Emerson has never had an ear infection and I don't think he has any hearing loss but it is still good to get tested because he has para and rhino virus on board giving him a very runny nose ( the nose frida suction has been my BFF and saviour). After our ear apt they will draw another blood sample and hopefully tell us the new plan for admission without being on pass.

Since being home Emerson is more himself everyday. The last two days he has been giggling and babbling non-stop. It is SO nice to hear his little voice. He's still not wanting to crawl much but now it will be hard with the central line because the clips keeping the lines closed are bulky. He's been using his walker a bit which makes me happy. Id really like to see him put on some more weight and muscle mass before having to be admitted again for his chemo/BMT. Even with everything going well at home Ive had a very heavy heart since our last admission. I think maybe the diagnosis has finally sunk in, like really sunk in. Deep into my bones and is trying to make me sick too. I see so many happy posts on social media and all I feel is bitterness and jealousy. Then I feel guilt because I can't even be happy for the people close to me. For the past week Ive been on the verge of tears every time I think about our lives. I know things will get easier but right now they really suck. SCID sucks..

But this little boy makes everything all worth it. I would do anything in my power to take his pain away and make him better.. We will get through this.. 

D, xo