I would like to personally thank y'all for your kindness to my family. Going into a situation like this we were unsure of the road ahead, not only with the actual medical procedure but with our financial stability and ability as well. We were very much overwhelmed with your more than generous response to our family emergency!
I have responded extremely well to the transplant, so far! Praise God!! Of course, it will be some time still to determine long term success. I feel confident that my prognosis is positive. As of today, all tests are showing "negative" for BCR-ABL (protein marker that indicates presence of Chronic Myeloid Leukemia). Although my doctors tell me that "remission" is a fluid term, I am disease free for the time being. Further observation from mont to month and year to year will be ongoing. Only time will tell.
Today I am day +65 (post transplant). We still have 35 days to go until I can return home to Lafayette. It's a marathon. What a journey!
I have complete faith that we have taken the necessary steps and that I will remain cancer free!!!
Again, we thank you all from the bottom of our hearts for the outreach and support, whether emotionally, spiritually or financially. We could not have weathered this storm alone! Thank you for showing up for us!!!
Cory, Jeni, Lindsey & Asa Guidry
Day +33 and counting! Last week Cory's appointments at the hospital have slowed down. He was able to stay home Saturday and Sunday with meds at home. He needs magnesium daily because one of the meds he's taking deminishes his own completely. The staff at MD Anderson had us watch a couple of videos and practice attaching a pump with with a nurse before they allowed him to skip some days at the clinic. It was scary at first, to go home without the help of the nurses, mainly because, uh, I had to flush his CVC line (catheter that is connected to a vein that goes strait to his HEART) then administer his magnesium. But no big deal, right?! Well, good news is, I haven't killed him yet!! The first day was rough, we were both very tense, but after doing it a few times we now have a system going. This week, he only had to return to the clinic 3 times. One of which was a bone marrow biopsy. In a couple of weeks his transplant Dr. will give us the results. This is really the only way they can tell if the transplant is actually doing what it is supposed to be doing. We'll know how many of the donor cells have taken over and how much of the Leukemia, if any, is remaining. The doctors are saying that Cory is doing fantastic:)
Finally, the boys got to come visit! We are enjoying our time together. Trying to stay healthy, clean and adjust to our life in Houston. We are so blessed!
Cory's now on Day +22 and feeling well. He tends to tire easily, and food doesn't taste like it used to, but overall, these things are completely normal and will get better over time. He was released from the hospital the Saturday before Easter, which was so exciting!! Since then he's had daily labs where his blood levels are calculated. Results take about 2 hours, then he has to be put on fluids, usually magnesium, and depending on labs, he may need a unit of blood or platelets and sometimes Neupogen, which is an injection that boosts the white blood count. Cory loves it because it burns like fire going in, right into his belly, (that was a joke; he hates it!!) His appointments can take up to 6-7 hours. So the difference from being admitted in the hospital to where we are now is, we just don't sleep there anymore! This is like a full-time job! These appointments are daily and will continue for about 2 weeks. Hopefully then, he'll only have to go 3 times a week, and once his counts are where they're supposed to be, he'll have to go in once a week. He has to remain within 30 minutes of the hospital until day +100 in case of fever or any symptoms of infection or Graft vs. Host Disease and requires 24/7 care. Life is far from normal, but we are managing. Our boys were supposed to come and visit this week for Easter break, but Asa, our 3 year old has a cough and runny nose. Doctors made it clear that Cory can not risk coming into contact with someone who is sick. What a bummer!! Hopefully we can all be together soon. We miss being around our kids, especially hugs and kisses. But they are being well taken care of by their Nan. They even got to go camping with some dear friends for Easter and had a ball! We've learned to celebrate the small things and be grateful for simply "being able". Cory found out that he can eat fruits with a hard skin, that we wash and prepare ourselves. So we will stock up on a nice watermelon, avocado, and oranges today! Also, he is able to go to restaurants, grocery stores, even the movies. He just has to be very careful and not go anyplace during peak hours to avoid crowds.
Anyway, thanks for caring! We are lifted by your prayers and appreciate the love and light you've sent our way.
Well, it's day +10 and i'm feeling as good as I've felt since being diagnosed! It is mind-blowing that I've maybe side stepped some of the more severe side effects of the procedure.The jury's still out on that. We will still not know if we have been successful until starting around the +19 - +24 day range.
We are in awe of all of the prayers, concerns and financial help that you have bestowed upon us. There are really no words that can adequately described our appreciation for your generosity. Please know that we graciously accept your charity with humility. We are ever so aware of the special gift that these resources represent. Our hearts are full and humbled!
Thank y'all so much! And we pray that God may bless you as He has blessed us! Thank you for your open hearts.
Cory, Jeni, Lindsey & Asa
We moved! Cory's new address is G1839. We had to give up our comfy, quiet room because it was a negative pressure room, which is designed for patients with infections. Lucky for us, Cory has no such thing, but unfortunately another patient on the floor does. So late last night we switched spaces and got settled. Today is day 6, post-transplant and Cory has been suffering with mucositus since day 1. We were warned that it would arrive after the chemo started kicking in. Mucositis is inflammation of the mucous membrane lining of the digestive tract. It creates blisters in the mouth caused by a low white blood count due to the chemo. He has to rinse with a salt solution every two hours to keep it clean and free from infection. He first noticed it on the roof of his mouth, then under his tongue and now it has spread to his thoat. As you can imagine, these sores are very painful and make it difficult to swallow. But we all know, my man likes to eat!! So he's pushing through, just taking smaller more delicate bites:) Soon, his counts will start to go up again and the sores will heal. He's really doing well otherwise, walking laps, playing some PS4, and a little guitar. The doctor and nurses are all amazed with Cory's attitude and spirit. I am so proud of his progress. He's working hard and fighting even harder! He's even had a few old friends come by, which made his day! Overall, we are missing our boys terribly but supporting each other through this "interesting" time in our lives.
We are thankful and blessed.
Everyone came in to tell Cory "Happy Birthday" today because his cells will renew like a new born baby! The stem cell transplant was today at 2pm, and so far, so good! They started him off with Benadryl right before so he was a little loopy and sleepy! He listened and sang to early Bob Marley during the whole process! It was set up as if he were receiving a blood transfusion, only it was stem cells mixed with preservatives. He received 4 bags of cells right through his clavicle catheter (port-like deal.) The preservatives in the cells give off an interesting smell of canned stewed tomatoes, so Cory has a new strong aroma that will last a few days:) They checked vitals every10 minutes and he remained normal throughought. The whole thing took about an hour and was fairly anti-climatic. So now the party has just begun.
Thank you to our donor, wherever you are! What a precious and valued gift you have given us. Also, a special thanks to my SMP Ascension family for the prayer circle this morning. It was moving to witness such love and compassion from my fellow co-workers and students.
Praising God from floor 18!!
Cory has been feeling great so far, with only one more chemo treatment to go. He's exercising, blowing into a spirometer regularly and even attending group music therapy!
Monday is the transplant which is considered day 0. Days 1-30, he will more than likely be here at MD Anderson. Could be longer or shorter, depending. Days 31-100 he will have to be within 10 miles of the hospital for daily check-ups at the clinic. Lucky for us, Cory's aunt & uncle have graciously welcomed us to stay with them, here in Houson during that time. These post transplant days are very crucial to his recovery. This is the time where the blood-forming cells will engraft, or grow into new, healthy cells to rebuild his immune system. Until then, he wil be at the highest risk of infection. Also, since the main goal for the donor cells are to fight off anything foreign, i.e., Leukemia, there is a risk with this as well. In some cases, the donor cells attack the donee's cells, i.e., liver, lung, etc. The doctors and nurses are encouraging him to walk and stay moving. He needs to be out of his bed for 6-8 hours a day, even when all he wants to do is rest. Pneumonia can easily creep in if he is horizontal for too long. He'll also have to wear gloves and a mask anywhere he goes for about 6 months to a year. He must avoid flossing, shaving with a razor, & clipping fingernails. With his platelets so low, any chance of him bleeding could be a major problem.
Although all this stuff sounds scary, Cory and I are confident in God's amazing character. He continues to show us grace beyond understanding. We know we are not on this journey alone and we thank you for being part of our lives.
If you are interested in visiting or dropping Cory a little line or two
MD Anderson Cancer Center
PO Box 300206
Houston, TX 77230-0206
We all know, Cory loves to visit, so if you can, please come! He's allowed to leave his room, but not the floor. Since he is limited to 3 guests at at time, please give us a call before you come. Everyone who visits is required to wear a mask and gloves upon entering his room (it's ok, we"ll all look cute together!) Also, NO fresh flowers, plants, fruits, or veggies on the floor. You can send them, but he won't get them. They carry fungi & bacteria that put him at risk of infection. We hope to see or hear from you guys:)
On Wednesday night, we returned home to Lafayette after 3 days of long appointments in Houston. Cory had a low grade fever, so we returned to MD Anderson on Thursday for an early admission. Since he was scheduled to admit on Monday, they will keep him here on antibiotics to keep a close eye on him. He's feeling much better now, but still has an irritating cough. Lucky for us, we have been beyond blessed with AMAZING friends that without hesitation made it possible for us to "up & leave" without a fuss. I can't explain what it means to us to know that our boys are safe, loved and nutured when we are not there. THANK YOU AGAIN & AGAIN!!!
Good news!! So far, Cory is getting the green light for the scheduled transplant. Last week, he began a series of pulmonary tests, CAT scan and a bone marrow biopsy. All results showing he is still in the chronic (phase 1) of Leukemia and healthy. Although there was some sign of sinusitus in the scan, he was feeling just fine. Just to be sure there was no sign of fungus or infection, they put an 8 inch tube with a camera on the end of it up his nose. OUCH!!! I think he kind of enjoyed it;)) Since last night, he came down with the sniffles and a sore throat.
Today, his chemo treatment was given with an hourly blood draw for 12 hours, to establish an efficient dosage. On Monday, May 24th, he will be admitted with 4-5 more treatments, then the transplant on the following Monday.
We thank you for the continued prayers and will do my best to keep you all updated.