Awwwwwwwww that is such GREAT news!!!!!!!!
*crossing everything for Wyatt*
Awesome news, I hope for the best! Thanks for always KUP-there are many who lurk and read but dont post
Thanks for the updates. I do subscribe to her site but these updates are sometimes a little quicker and easier to read.
*Sigh* So the marrow scan came in, and they're still seeing the neuroblastoma in his left side, so he's not NED yet They're going to do some more aggressive chemo to prepare his body for his marrow transplant, so hopefully it will wipe out that nasty neuroblastoma. He also has to undergo some radiology treatment that could possibly make his kidney that the tumor was on top of unusable They will also have to go around his spine, which could cause scoliosis or stunted growth.
BE GONE, STUPID CANCER!
Some good news, and there is some, is that Wyatt is in excellent spirits. They were released from the hospital on Sunday and got to meet the cheerleaders from the local NFL team. Wyatt even got to bang on some drums and cymbals and had a wonderful time taking pictures with the cheerleaders.
So Horrible my friend has just been told her cancer is back too and it's not looking good. Such an awful disease. Thinking of him and hoping for more good news, but glad he's in good spirits, he's a strong little man.
Angie just updated. Tests came back that his hearing was moderately reduced and needs hearing aids now. His left kidney was also slightly damaged. However, Wyatt is in excellent spirits. They actually got a week free of all tests and treatments, and he has just been thriving wonderfully He is laughing, playing, and even got to stay at home on the base. He even got some weight back and actually has a dimple in his cheek!
There is a very hard road in his immediate future, however. Today starts his pre-transplant treatment. It's going to be 4 days of lethal dose chemo to get rid of all his marrow (the cancer will be wiped out!). Then 3 days of rest to allow his body to rid itself of all the toxins. Finally, after the resting phase, he will receive rescue stem cells that will form new marrow. These are his own stem cells that were harvested earlier in this whole ordeal. He has already started taking special medicines to help keep his liver OK during all of this.
Prayers are needed!
He will be in our thoughts and prayers! Glad they are to this stage and things are coming in place for him to hopefully be healthier. Glad to see he got to be a little boy again for a bit before this next phase.
thank you for the updates. I used o check caringbridge daily but sometimes it scares me what I am going to read. I pray this is the end of his fight and he beats this nasty cancer. It breaks my heart all the stuff this poor little man has to go through.
I'm glad he's on all of you girls' hearts! He truly is a very special and brave little man
He has been doing wonderfully with this particular bought of chemo. He actually went almost 2 days without getting sick, a surprise to everyone. However, last night, it has finally caught up to him, and he started to get really tired and then started throwing up. I believe today is his last day of chemo for this round.
His transplant is 3 days from today (on August 7th).
Ooops. I got the transplant day wrong. It's actually Monday, the 8th.
He still has bursts of energy between naps, and many of the nurses at the hospital have never seen that side of him before From what I understand, the hallways go around in a circular fashion, and he rides a sit-down scooter down the halls, making pit stops in his room for "gas," AKA apple juice. The bad news is that his heart rate is up to 150-155 usually and spikes up to 170. He also is low in electrolytes, high in liver function numbers, and has a temperature that reacts to meds but then goes back up again. He's on antibiotics, so hopefully they'll help. He's also retaining water and is puffy, especially around his eyes and tummy.
Please continue praying. I really do think the positive energy helps.
Yesterday was the big day! The transplant went quickly and was over in a matter of minutes. He is feeling the negative effects already and has red itchy patches on his diaper area, armpits, chest, and neck. They are giving him benadryl and calamine lotion to help ease his discomfort, along with O2 (his oxygen levels have dipped a bit) and a diuretic called Lasix to help him lose water gain. It's also making him smell like creamed corn and rotten milk (Angie's words exactly), which makes him nauseated. Although the transplant is causing major discomfort, it's his lifeline. Such wonderful stuff. Go stem cells. Do your work. Give Wyatt all-new marrow. Make him sparkling clean and keep the cancer away!
---And most important of all---stay away infection!!! You leave our sweet Wyatt alone.
good to hear the transplant went good. Hope the side effects go away and everything takes fine. Heres to hoping Wyatt is as good as new soon!
Things continue to go well, as he is only getting sick once daily and doesn't need his oxygen during the daytime. He still needs it at night and is still itchy, but he was playing with his O2 cord like it was a firehose, so he's still in good spirits!
Day 2 after transplant--he's slowing down and resting a lot. He has sores on his cheeks and tongue and white on his gums and the roof of his mouth (a sign that his cells are shedding). He had a fever as high as 103.5°F and is on a new antibiotic in addition to the others he has been taking. He's still very itchy and red, and they have had to change his cleaning fluid to a milder mixture of iodine and water because the original chlorahexadine swabs were too painful for him. Whenever they change his Hickman line dressing, Angie draws a new picture on it for him. This last time, he requested a fighter jet He loves the book cart and got to read books about fire trucks, sharks, and the magic school bus's adventures to the moon, the ocean, and science fair all while cuddling Angie.
Day 3 was like Day 2, except more mouth pain He still has a fever (with chills, I don't think I mentioned that last time), and his little heart is beating hard and fast. They say it always gets worse before it gets better, so let's all pray that the bad part leaves so it starts getting better soon. Angie asks that we also pray for another boy there. She wasn't specific for privacy reasons, but she called him B and said that they are in desperate need of prayers.
Thank you all!
He's still hurting a lot (tummy, mouth, and even his shoulder) and has a really elevated heart rate. He has tested positive for a virus (enterococcus), and they have changed his antibiotics accordingly. This is a tough bacterium, so they're trying out combos of abx to get it out. It's possible that it's only in his Hickman line (as opposed to his blood stream), and, if it is, they will have to do surgery to remove it and wait until he heals before they can do a re-insertion. Poor guy
Wyatt news today is good They saw a spot on his L3 vertebrae but have concluded that it's not malignant. Also, there was what they thought to have been a blood clot in his renal (kidney) vein but is now just thought to be calcification. He's still getting sick daily and still has fevers and still has the mucositis, but the fevers are not as bad as they have been, and his body will be able to fight off the mucositis once his white blood cells start coming back (they're thinking day +10 or shortly thereafter--that will be August 18 so soon hopefully).
Great Wyatt news--he's making white blood cells now Be gone, mucositis!
I wish we had like buttons on here lol. Thats great news!
His white blood cell count continues to rise! He's also a little more active and threw a good fit (a sign that he is, indeed, feeling better). His mucositis looks horrible, but those white blood cells know what to do. Go Wyatt!!!
His white blood cell count continues to rise, and he is getting his energy back. He is starting to play more. Yay for feeling better!
Wyatt has been doing wonderfully these past few days. He's playing more and enjoying music therapy a lot. On Friday (August 26), he'll go to a new medical clinic to start radiation. That is going to be a big ordeal--he'll have to be under anesthesia for 5 days each week for several weeks. Angie wasn't specific how long each anesthesized bought would be (I'm guessing a couple hours each day).
Im so glad to see his numbers rise but sad to hear about how he has to go about radiation. Any idea how long that is supposed to last? Continue to do well Wyatt!
OK, it looks like I got confused. Today is actually radiation simulation, in preparation for actual radiation, but he will still have to be anesthetized for it. No word on exactly how long actual radiation treatments will last, but it will at least be a couple weeks.
Just wanted to say again, I appreciate your updates! I'm subscribed to the CB site but your updates are easier to read when I'm too busy to read the details.
No problem, Vicki! I'm happy to keep you all in the loop
So, Friday's simulation went OK. He had a big fit after the anesthesia and needed tons of comfort, but all went well on that front. Now, something bad--during the procedure, they ended up accidentally losing his Hickman cap. Since the Hickman line goes directly to his heart, this is a mondo huge deal because infection can go right in there. Prayers, please, for no infection!!!!
Radiation officially begins September 13th, and he'll need to do 12 days of it. I'm thinking it's going to be only on weekdays, so it's not 12 days back-to-back. He'll have to be anesthetized for each treatment. Thank you all for your good thoughts and sweet prayers.
He has been regaining energy every day It looks like they are going to finally be able to get out of the hospital! I believe they will be staying in the bone marrow apartments. Radiation is still on schedule to start a little later this month.
Good news. I hope he can go home for a bit and be a kid. Glad everything is on the up. Hopefully it stays that way
They have moved into the marrow apartments, and it's fantastic--2 bedrooms, their own laundry room with washer and dryer, living room, dining room....and Wyatt is doing splendidly! He's running, playing tag, playing hide-and-seek, and enjoying his big brother and big sister. Angie says he's being a normal 3-year-old. Isn't that wonderful
wonderful news! I hope things continue to look up and he gets to keep being like a normal 3 yo
He's still doing great. His eyelashes are even starting to grow back in. He's getting an appetite, but he still can't eat much. Oh, well, progress is progress!
He's having tummy pain and diarrhea and some leg pain, but those things are considered normal after transplant.
Radiology will begin on September 19th.
Still lots of energy but tummy pain and diarrhea. They think it may be normal, but they're also doing tests to rule out everything. I hope it's all just par for the course!
All stool tests have come back negative for sweet man, so there aren't any infections. Still, due to his pain and diarrhea, they may have to push back radiation Please continue to pray for no more pain for Wyatt.
A CT scan over the weekend showed no abnormalities (which is excellent), but there were still no true answers as to why he's having diarrhea and tummy pains. They are going to have to do another radiation simulation today because all the markings they did at the last one got pulled off by his marking stickers, so it's simulation today (Sept 19), and if he continues to look good, radiation tomorrow.
Radiation will begin today. He'll have to have 12 sessions and be anesthetized for each one. It turns out the tumor had pushed down his kidney and ever since they removed it, it has been moving back up to its original place in his body. Unfortunately, that's bad news because it means they'll have to radiate a whole lot more of the kidney than they originally thought (they are radiating the whole area where the tumor was to get every last cell there). They believe that he'll more than likely lose all function in that kidney, but it will go slowly, and he should still have it through immunotherapy.
Ugh! Radiation had to be bumped another day because of complicated cases today. Poor guy had to go on a food and drink fast this whole morning for nothing
Radiation finally started yesterday (Sept 21st) as planned. They decided to stop doing the markings and stickers and just go ahead and tattoo marks on his chest, tummy, and ribs to make sure the radiation treatments are precise from day-to-day. After the treatment, he woke up grumpy but turned back into his sweet, playful self.
Thank you again for keeping up with sharing the updates here. I've checked in when I'm able and continue to keep Wyatt and all the family in my thoughts and prayers.
Absolutely no problem letting you girls know what's up!
Wyatt is doing great in radiation. He used to be afraid to go in, but now he has come to like his "sleepy times." His scar is a bit irritated by the radiation, but they gave him a cream to use, so hopefully it will get better. His tummy issues are also getting better. Angie says it seems the pain is getting less and less.
Thank you all for your thoughts and prayers. I think they help a whole lot
Omg tons of prayers and thoughts your way! I hope the little guy gets better quickly..
hope the radiation goes well and quickly. and he will have quite the story when he grows up about his tattoos
Glad things are doing ok. Im so glad hes at the point of radiation though, for sometime it was pretty hard to get things moving in the right direction
Radiation has been going smoothly, except for Monday morning (Oct 3), when he somehow got himself a glass of orange juice (he's not allowed anything to eat or drink before his radiation), so he didn't get treatment yesterday and they had to tack on an extra day. Angie reports he's starting to feel some affects from the radiation, so more throwing up. He's starting to lose weight again, despite his feeds being turned up to 14 (they were at 7 for the longest time), due to his tummy issues, so they're bumping back his immunotherapy sessions a week in order to try to get him to a healthier place. He's still in great spirits and likes to exercise (squats and the like ).
Thank you all for your Ts & Ps!
Today is his last day of radiation! He is back to being inpatient again at the hospital, however, because he tested positive for gram negative rod (a bacterial infection). He's getting antibiotics, and will get to be released when he has 3 negative cultures in a row. Despite having a bacterial infection, he has no symptoms.
They are trying to up his feeds again, but it's very difficult because upping his feeds (through his tube) is making him throw up He's at 28, and they're trying to get him to 60 before immunotherapy starts on November the 7th.
He's been released, finally The bacterial infections are no more. There have been some setbacks with his feeds, so now he's back down to 20. Since Wyatt seems to be the most sensitive kid they've seen as far as feeds go, they are researching the different tubes (ND vs NJ) to try and figure out why he's having such a hard time ramping his feeds up (he gets horrendous nausea if they go up to fast).
He got fit for hearing aids yesterday and did a great job. He picked out some blue ones because they didn't have fire-engine red available He's on probiotics because the diarrhea hasn't let up. They tested it to make sure there's no infection, and there isn't When immunotherapy starts, he'll have to go off the probiotics, so everyone is hoping they do a good job of regulating his system before then.
He has been doing really great and having lots of fun at physical therapy. Now is a very scary time for Angie (and, of course, all the family). Wyatt is going through re-staging, which means he's going to take a lot of tests to see if the cancer is gone. He's doing an MIBG scan, CT scan, bone marrow biopsy, and iothalimate test (for kidney function). The last time they did it, he was clear everywhere except in his bone marrow. Let's all pray and send warm vibes for an all-clear this time. The results should be in on the 31st.
Hoping that Wyatt is clear this time.