On the other hand, I am not happy about having to re-start this blog. I was kind of hoping to put it all behind us. But, unfortunately, it was not to be: Noah has relapsed.
I hope we can be forgiven for having a few questions. You see, after six years, you start to think you're in the clear. It was a wonderful time: he finished treatment in 2014; he excelled in school; enjoyed playing sports and pestering his sisters; he got a job at a local gas station and a girlfriend; and basically enjoyed life. Yes, Noah had been in remission for SIX years. Apparently, relapse this late never happens. According to Noah's doctor, he has only seen this five times in his 30+ year career. He was sure it was something else, something much less worrisome than leukemia, and he was completely shocked when the results of Noah's biopsy came back positive for ALL.
So, that happened on April 26, 2017. I'll give you a brief rundown of the situation:
On February 12, I remembered that Noah hadn't been in for his three-month bloodwork and check up in January, so I dropped him off at the hospital and I went to work. At 11:00, I got a phone call saying that the doctor wanted to see him asap because his counts were off. Apparently all of his counts tanked. He was Anemic (very low red blood cells), Thrombocytopenic (low platelets), and neutropenic (very low neutrophils, infection-fighting white cells). It was so strange, we hadn't seen numbers like this since 2012. Five years!!
They initially thought it was a virus, and he did get very sick that week, missing basketball zones and school the whole next week. After a week or so, he recovered from his illness, so I thought it must have been a virus as well. However, subsequent bloodwork showed that everything except his Neutrophil count had gone up. I was very worried about him going to school and work with counts so low, but we thought, he can't stay home forever. So he continued to go to school and work, even going along and playing some at basketball provincials. His ANC (neutrophil count) was consistently around zero the entire spring. Normal range is between 3-7. He just lived his life normally and, miracle of miracles, did not get sick after that initial illness.
By the end of March, the doctors at Children's had decided that something was up and ordered a bone marrow biopsy. That was the week Noah was scheduled to leave for Encounters With Canada, as well as a class trip to Quebec City. We knew how much Noah had been looking forward to this trip, so we asked Dr. Davis if he could do the biopsy upon his return. In hindsight, I am so glad we did, for two reasons:
1. It was an amazing trip. He had a fantastic time with his friends and learning about Vimy and going to a reception at Rideau Hall, etc. So. Fun.
2. The biopsy may not have shown anything a month earlier. His bone marrow was pretty full of blasts, but he had no circulating blasts in his bloodstream as of yet. We would have been puzzled.
So what now?
He is currently in the first phase of treatment, called induction. It looks very similar to the first time so far. He has had two days of a strong chemotherapy drug called Mitoxantrone, five days of Dexamethasone, two doses of Vincristine, and he will have had two rounds of Erwinia l'Aspariginase, which means 24 needles into his quad muscles, which he really hates. As of this writing he has had eight of them. He has had two lumbar punctures, with chemo into his spinal fluid, just in case there are leukemia cells in there. So far he is clear. He will have two more doses of Vincristine, and on Wednesday he will begin the next five days of Dex. He doesn't like it because it makes him "chubby" Hearing him say this makes everyone giggle. He is certainly not chubby. Far from it. The last day of this part is May 31st, when he will have Erwinia, a lumbar puncture, and a bone marrrow biopsy.
This is the important part. The biopsy is to see if he has gone into remission. We are praying that by the end of induction that he has, indeed, gone into remission, because if he hasn't we are looking at a bone marrow transplant, which we would like to avoid if at all possible. Please join us in praying for remission. This means fewer than 0.1% blast cells in the bone marrow. Unlike the first time, we are not getting weekly updates as to where his bone marrow is at. It's just the one.
Right now, we are at Ronald Mc Donald House, which is amazing. Noah is feeling fine, eating a lot, which at first I attributed to the Dex, but now it's just his regular, 16 yr old boy appetite. He remarked this afternoon that he is feeling perfectly fine. Just tired. He was very happy when his friends came from Smithers to visit! On one of the first days, his friend Andrew came to hang out for a bit, and my brother Scott came with his three boys too. Visitors are great. This is a photo of Noah's friend, Jordan and Noah's girlfriend, Emily. It was so awesome that they came, even if it was just for a few hours.
He has gone to school at the hospital a few times; he thought it would be a good idea to get lots of work done while he is feeling well. Smart boy! He spends a lot of time playing his guitar, and even had a FaceTime guitar lesson with his teacher back in Smithers.
So. Chubby.
We decided to put Noah in a study, which I will explain in further detail in a future post. I thought I had better get this one done; I was having trouble wrapping my head around starting it up again....
I don't want to be here. I don't want to be doing this again, but here we are. And once again, we can see the Lord's hand all around, and feel him lifting us up. Thank you for all of your support, for your love and care, for your meals, for your kind messages and texts, all of it, much appreciated. Thank you.
yay for getting your blog back! Thanks for letting us in to your daily, we will be specifically praying for remission! Love you guys!
ReplyDeleteThanks for keeping us in the loop, Stacey, as difficult as it is, I'm sure, to have to relive it all through words. You, Noah, Tom and the girls are in our prayers continuously! Remission ��
ReplyDelete❤️❤️ Thank you astacey, he's such a strong, amazing guy! Constantly in our prayers here ��
ReplyDelete💜❤Praying for remission❤💜
ReplyDeleteThanks for the update, Stacey. It sucks that you are all back "here" again. Continuing to pray for all of you and specifically for Noah to be in remission.
ReplyDeleteThanks for updating! Praying for you all and The treatment plan regularly. Love you all.
ReplyDeleteWow, I remember this blog so well, Stacey, and all the photos of Noah...he was such a little guy then. Can't believe this is happening again...We pray constantly for you all, and especially that Noah will go into remission...for good! Love and hugs...Marg
ReplyDeleteTHanks for the update, Stacey. Praying that the fever goes down, that Noah can enjoy the weekend with Tom & the sisters, and that there is sunshine your way. Sending you lots of love.
ReplyDeleteWe're thinking of you and praying for you - peace, strength and that remission may come soon!! Love you all!!! Chris and Elizabeth
ReplyDelete