My little cousin Jude needs lots of prayers right now, as do his parents. I don't think Sarah will mind me posting this, as everyone will know just what to pray for. This was the journal entry she had posted on their website this morning.
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Hello everyone. Well we had quite a day, to say the least. Most of you are probably wondering about what the staging is so I'll get right to that. He is stage 4. I know that is probably extremely shocking to say the least, but know this - Clint, Jude, and I are all doing okay. For those who don't know, they stage cancer based on A LOT of criteria, and it means how progressive it is. 1 is the best and 4 not the best. But if you remember nothing else from this shocking entry, please remember this - WE WILL NEVER EVER GIVE UP FIGHTING THIS! Now, please read on because we both feel like we have some encouraging parts to share with you. And remember, still even at stage 4 there is 70-75% survival rate. But as Clint and I say, we don't care about stats right now because they didn't all have our kick butt doctor! And if I ever learned anything from sports it was this that I actually have remembered all throughout my life - "On any given day, anybody can be anybody" - or anything in our case. First I'll get to the medical stuff about how we got to stage 4. They have narrowed it down to Burkitt's Lymphoma, which is a super fast growing cancer. Dr. Lewing said that it can double within HOURS! That blows my mind! And makes me soooooo glad that I was persistant. But on the flip side, fast growing tumors react very well to chemo - which is good. Initially the tumor was just pushing against a small portion of his brain and not involving the brain, but considering how fast the tumor is growing the needed to do another MRI today to make sure it hasn't penetrated the outermost layer of the brain. The results were not very clear to Dr. Lewing and the other doctors that she consulted. Some thought it looked like it has, and some thought it didn't look like it had. So awesome Dr. Lewing emailed all of the Jude's info and scans to the doctor in New York who she said is the best in the nation when it comes to Burkitt's and that when you mention Burkitt's this doctor is who is synonomus with it. Also, this doctor has been doing clinical studies on a drug specific to Burkitt's - the data is not all in on it yet since it hasn't been long enough but they do know that the medicine can identify Burkitt's cells and can attack only them - which to Dr. Lewing makes sense that it would work - but with anything there is a lot more to look at, especially since the clinical studies are not complete - we will keep this up for consideration when the time comes. So the doctor in New York got back to her asap and said that it's a close call so he would go ahead and stage this a "conservative 4, group C", meaning stage 4 (group C is a subcategory that my brain can't explain right now). As far as the new meds he said it is up to Dr. Lewing, which we agreed we'd take as it came. There is another part to this, though. They did do a CT on his abdomen, pelvis and lungs and found it in all of those areas. Now this was hard for us to hear, but as Dr. Lewing has told us many times since yesterday, fast growing tumors like these seem to "melt away" pretty quickly (like we'll see a difference in his face I THINK she said in a couple of weeks) and so this just means that our treatment will probably be longer (approx 8 months) and more intense. We don't know yet if it's in his bone marrow, and so far they haven't found it in his spinal fluid. Not sure if we find out about the bone marrow tomorrow or Monday - but regardless the first chemo treatment is the same for every kid that has cancer. Our first nurse of the evening told us that she's worked here for 4 years now and they haven't lost a Burkitt's kid yet! VERY ENCOURAGING! This is still treatable!!!! She also said that Burkitt's kids tend to get really sick really fast, which was also hard to hear. But if it's the means to the end of this cancer then by gosh, we can do it! I'm kinda trying to relate it to Deal or No Deal (I know, corny) but in order to see if you hold the million dollar case you have to go thru all of the other cases, which sometimes are low numbers which is good and then others that are high, which is difficult to endure, but in order to succeed you have to go thru both. So he got his first dose of chemo today, and then they'll watch his labs extremely close and if in a few days his numbers look good then we can go home before starting treatment #2 next Friday. I know this is overload. Believe me, our brains are about to bust. But we are hanging in there for sure. I have a ton more to write about (not health status or anything like that) but am E-X-H-A-U-S-T-E-D!I'll write more tomorrow, promise.I love you all and KEEP PRAYING!!!Love,Sarah
Hello there-
ReplyDeleteI just found your blog. I loved the statement "WE WILL NEVER EVER GIVE UP FIGHTING". Your cousin is in our prayers.
In 2007, my son was also diagnosed with stage IV grade C Burkitt's Lymphomia. The cancer continued to spread into 85% blasts in his bone marrow and central nervious system. It is great news that your cousin's spinal fluid is clear.
You are correct that the fast growing cancers cells tend to die off fast as well. Burkitt's can be beat. You just have to hit it hard. It sounds like you have a high confidence in your doctor.
Our son's treatments involved many doctors in eight different hospitals (including Columbia and Sloan Kettering in New York). As the cancer continued to spread, many began to say he would not survive. But today he is 15 months in full remission, and in perfect health. Incredible prayers, support, and fight.
The courage I saw from my son and the other kids with cancer has changed my life. When we learned the cancer had advanced to his spinal fluid, my son said, "I will still fight. And when I fight, I always FIGHT to WIN!"
Jude will beat this, and go on to live an incredible and amazing life. As a dear friend of ours said, also a Burkitt's survivor: Just change "impossible" to "i'm possible".
The Lord is with you, mighty warrior. - Judges 6:12
Please feel free to contract me if I can support you in any way in your battle, or check out my sons Burkitt's website at TylerAlfriend.blogspot.com
kalfriend@kw.com
thank you! I sent your reply to them- I know they will be so encouraged by it!
ReplyDeleteJessie B