Corrine and Jude's Medical Fund
Corrine Cassels had her second son Jude on April 13th. During her pregnancy she was diagnosed with thyroid cancer. They will need to remove her thyroid and then decide if any other action will need to be taken. Though she is currently putting her surgery on hold.
A week after Jude was born they were told he has Severe Combined Immunodeficiency (SCID). This is a very rare condition that means Jude has no immune system and his body can not fight off even mild infections. He will need to get a bone marrow transplant in order to have a working immune system. He will also need medical care his whole life. Corrine and her husband Chris Lies will have to take special measures Jude's whole life to keep him safe.
Due to Corrine's own health and now the health of her baby, she will not be able to work. It will be a full time job for Corrine to keep Jude healthy and keep him from getting sick for the first year after his transplant. A transplant is very expensive and Corrine's surgery and treatment for her cancer will also be expensive. Her family will now be on a single income. If you can, please help her and her family. Thank you.
I've been behind on updating this and for that I apologize. I post regular updates on Facebook and always forget to copy them here. Well, we have hit the Day +100 mark and Jude is doing amazing! This is an important milestone for Bone Marrow/Stem Cell patients because it means they've gotten past the critical time where infections and complications are likely and are on the road to recovery. He hasn't had a single infection or illness or even a fever, which is a big deal. We know we are extremely lucky as this is not a normal SCID baby's experience. The doctors are so impressed with his progress and he's quite the celebrity on the 18th Floor at Lurie's. Jude also had his central line removed a couple weeks ago which has greatly changed our lives in a positive way. No more daily flushes, no more home health nurse visits (although we do miss Joanna), no more moments of panic when the tubes fill with blood and best of all- he can take normal baths now!! It also is much more comfortable for him overall and you could notice the difference immediately. He is much more adventurous on the floor now while playing and is SO close to crawling. No central line means they have to poke him with a needle and insert an IV every time he goes to clinic, but since appointments are only once a month now, we can handle it.
Jude's numbers continue to look great and we were able to take him off his anti viral and anti fungal meds. It does make me a little nervous knowing he doesn't have that extra protection, but the less medications his little body has to process, the better. He still has his anti rejection med (immune suppressant) and two more medications for pneumonia prevention and blood PH levels, but going from nine meds to three is pretty awesome. He is now officially out of isolation which is so exciting! We can take him to stores and restaurants (while still being very careful and mindful of germs) and we can have more visitors now. This makes life much easier.
As for me, I had my thyroid removed on September 12th. The surgery itself wasn't too terrible. I remember going into the operating room and the anesthesiologist said he was going to give me something before knocking me out to help with anxiety. After looking at me he said "You look pretty relaxed already, though". I said "Yeah, I'm good, but I'll take the free drugs if you're offering." Everyone laughed and the next thing I remember is waking up in the recovery room. So, no big deal. :) The recovery itself was more uncomfortable than painful, but adjusting to the new medications was another story. After weeks of headaches, stomach pain, intense joint pain and not sleeping, I finally feel like myself again. My cancer turned out to be Stage one. It was very close to moving outside the borders of the thyroid, but we got to it in time. Because it was stage one, my endocrinologist and I decided because of my age and other factors, it was best not to do radioactive iodine, which was a huge relief to me. They will do a high tech blood test every six months that will catch any new cancer growth in the thyroid area, but I'm expected to have a full recovery and am currently cancer free.
Overall, we are all doing really well. We love our new house and our new neighborhood and Shane loves his new school and new friends. Of course , living with one income is tough, especially with the medical bills piling up. We just found out our insurance rates are going up by almost 40%, which doesn't even include out of pocket costs, so that can be a little daunting to think about. But looking at what we've gone through these last few months and how far we've come, I know we'll be ok. And again, I can't thank you all enough for all your support and encouragement. It has really meant the world to all of us.
Shane started second grade in his new school and loves it. His teacher seems very patient and engaging. Shane is pretty excited that he's a science nerd since he is too. He loves his new house and neighborhood and is very happy to have his brother home. You can already tell they're going to be very close. Shane loves helping and "watching" him while I do stuff around the house. He even helps me when I flush Jude's central line and gets to wear special "doctor gloves". It feels pretty great to be back together as a family again.
My surgery will be September 12th. I honestly am not even worried about it. I watched my four month old go through things most adults I know couldn't handle, so this is a piece of cake. I'll be fine. I'm just looking forward to this being over with so Jude and I can focus on healing and being healthy and happy at home
We are now on Day 24 post transplant and Jude is doing amazing. His white blood cell counts are going up drastically every day and we're almost at a "normal" number! But these cells are brand new and don't quite function optimally yet, so we are not out of the woods. But we'll get there. His DNA test last week showed that he has 78% donor cells. That number is expected to go up in the coming weeks and will hopefully be close to 100%. We don't want his own cells to grow because his white blood cells don't function properly because of SCID. The amazing thing is 88% of all his white blood cells now are t cells. He was born with ZERO!! The doctors are very impressed with his progress so far, so much so that we will hopefully be going home this week. We had a little scare today with some swelling that turned out to be nothing other than fluid build up, but other than that Jude has had no complications. He still needs blood transfusions and platelets here and there because the red blood cells take a little longer to catch up after chemo. So we'll still need clinic appointments 1 or 2 times a week even after we go home to monitor all his levels. But driving to the city a couple times a week seems a small price to pay to be home again. The Ronald McDonald House is an amazing organization and we are so thankful to them for everything, but we want to go home. I know Jude will have so much more to entertain him at home and that will hopefully improve his fussiness and sleeping habits. We will have to have home health come once or twice a week to help with his central line care, and he'll have physical therapy and development therapy starting soon too. The chemo and transplant could delay his development so we need to work on it right away. I am so excited to be going home soon, all this seems like no big deal to me. I can't even tell you how different my priorities are now. Just being in the same room with my family and being able to eat meals together and watch my kids grow is all I need for awhile. And maybe to have a cup of coffee with my dog in my backyard. My surgery is scheduled for September 12th and I honestly am not even the slightest bit worried about it. I have watched my 4 month old baby go through more than most people have been through in a lifetime, I think I can handle going to sleep and waking up without a thyroid. It was so far in the back of my mind this whole time we've been out here, Jude's doctors would ask about it and it would take a second to register what they meant. I'm just looking forward to it being behind me so I can focus on Jude healing. Shane starts school next week and although I'll miss his orientation this week, which I'm really bummed about, I'll be there for his first day. He really is quite a kid. Everyone has always told me what a sensitive, intuitive person he is and he really proved that this summer. He is not jealous or resentful of the attention Jude is getting at all, he is just so concerned about him and wants him home. When he stayed with us at RMH, he was such a big help to me with Jude. He made sure everything was clean and sanitized and he was the only one who could calm him down when he got worked up. He is such a good big brother. I can't wait for us all to be together again. Just a few more days. :)