Erica
LIF Adult
Member since 5/05 11767 total posts
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7/19 Update on Max REMISSION - 6 MONTHS
I had to start a new thread, since I couldn't look at the old title, where I posted so innocently, not knowing what our fate would be in a mere few hours.
First, thanks for all the FMs, hugs and positive thoughts! I am overwhelmed by family, friends, acquaintances, and strangers! I never really realized how just the  can make a difference. I really am feeling all the positive vibes and it's helping me to power on!
We finally got a diagnosis: Burkitts Non-Hodgkins Lymphoma. He had a spinal tap, which was negative  and they gave him chemo there to protect his spine and brain.
There are two tumors. One large one by his hip (where his initial pain came) and a smaller one at the bottom of his heart (it isn't as bad as it sounds). From that it is at least stage 3. They are testing his bone marrow to see if it is stage 4. So far the tests have not found any in the bone marrow, so we are hopeful.
He started Chemotherapy Thursday night, so the hospital allowed his little brother to come quick and visit. it will be the last time they see each other for 3 weeks 
The first week is mild. He has some nausea the first morning, but zofram stopped that right away. Other than that, he isn't having any side effects from the chemo drugs...yet.
His issues now are his uric acid level (acid that excretes from cells that die) and since his stomach is so distended, he is having trouble breathing. He cannot get higher than 90% O2 on his own, so he wears a mask that pushes air into his lungs. He absolutely hates it. He is so mad, angry and sad, but still strong.
We are in the PICU b/c of all the testing and his uric and oxygen levels.
Some people asked how we found this. We thought he had the stomach flu two weeks in a row (a new school year - thought it was possible). He then started complaining about hip pain. (apparently where the large tumor is). He also mentioned his heart hurting (where the smaller one is?).
We ran all possibilities. stomach flu, irritable hip, growing pains (I even think that I may have answered a post that DS had them recently), homesick, school phobia (I emailed his teacher).
On Monday, He started dry heaving...DH noticed his stomach was super hard (he is very muscular, so I didn't think too much). We went to a fair and came home...took a bath...and naked I saw how big his stomach was.
We started researching and when I got to appendicitis, I called the after hours dr. We went there and they found a mass (I still thought that was inflamed appendix). They sent us to ER. ER took CT scan...found malignant tumor.
I kid you not, the ER doctor came in (I had not slept in 22ish hours) and said "It's bad. It's malignant. It's spreading." Pure shock. I was shivering on a stretcher from it all.
Our outlook is 80% success in a 4-6 months of treatment (since this was a fast growing tumor, it should die fast - so we are "lucky" there) and 90% cancer free in 3-5 years.
The guilt is incredible on so many levels. I'm so nervous about getting the house ready and sterile. People mentioned getting rid of all carpets/getting new. 3 weeks just isn't enough time to get ready - especially when we are dividing our time in so many places. it's good we have a lot of friends and family ready to help/
Sorry if this post is all over the place...Just trying to get something down to update. I am trying to start a caringbridge page. But juggling two other kids and pumping proves to be time consuming! LOL
Thanks again for all the good thoughts...they definitely help!!
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Update 10/25
The reduction phase was a success last week. The first round of chemotherapy was mild and reduced his big tumor by 30+% (I'm assuming the smaller one too). He had a week long stay in PICU for fluid in his lungs and 4 hour blood work, but he is in the oncology wing now.
He just began the first round of the second stage (five rounds total in three phases) and he is handling it well, but we must remember that these drugs are cumulative, so we are preparing.
I am done being guilty (for the most part). This is one of the most aggressive cancers, I am now marveling in the fact that we got him to the hospital in time and he is getting treatment. Since it's so aggressive and high stage (he may have >1% in his bone marrow to make it stage IV, but treatment is the same as stage III, so it's not that important - III and IV are both considered high stage), it has to be treated aggressively.
The big downside is that he will not be leaving the hospital, probably for the entire treatment. So we are shooting for coming home in February. We have a pretty good schedule right now, but I go back to work 11/21 and things will have to shift. DH will stay at the hospital M-F and work from the room. I will stay F-M. It's going to be hard to be away from either Max or our other two kids for that time, but we have been skyping up a storm already.
The upside is that since he won't be coming home during the treatment, we don't have to create a sterile environment. I did have a force of family and friends come into to clean! Well, now I have a really clean house! (better than our house cleaner EVER did)
We have been pretty honest and upfront with him. We have told him that he will be in for months, but he hasn't connected that means not being home for all of the holidays. I have no idea how we will do that. I'll try to tackle Halloween first.
Today he gets another spinal (I believe he will get 7-9 in total!  Even though it did not spread to the central nervous system, this is done as a preventative), two more chemo drugs (after three last night) AND he has to have a tooth pulled. I think I almost feel worse about this. I knew he had a cavity, but we missed our dentist appointment and they were pretty rude about it, so I was lazy about rescheduling. The oncologists don't want it to become infected. Make sure you take your DC to the dentist!!!
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10/26 - must learn to expect the unexpected!
We are most likely going home on FRIDAY!!! They are so happy with how he is responding to this treatment! His counts are great.
Just when I get my head wrapped around staying for 4 months! I'm not complaining...since if we can keep him infection free for 3 days...he will be home for Halloween!!
If all continues to go well, his next treatment will start November 7...2 weeks earlier than I projected (I added a week as a buffer)...he'll spend 6 days in the hospital and come home again - maybe for Thanksgiving!!!! But honestly, we can't spend it with extended family, it's not a big deal to miss.
I can't predict what December will bring....but this is making us so hopeful!! But it looks like he might be finished with Phase 2 by the end of November - with one phase left to go. Trying not to think about December too much, since I don't want to be disappointed, but I'm still a bit giddy.
I knew my boy was strong and he is just proving it.
Thank you so much for all the well wishes and positive thoughts!! It's amazing how everyone wants to help...even "strangers" I'm going to talk to the blood bank and see if i can set up blood donations in his name (to replace any he will need for transfusions.)
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11/1
a quick update...about our roller coaster ride.
DS did not come home :( Apparently the on call oncologist and our oncologist have two POVs. When our oncologist heard that the on-call oncologist was sending us home, she ordered an ultrasound and the tumor is still too close to his bowels and if that ruptures, the risk of infection is too great.
Better to be conservative, but we were disappointed. Good thing DS didn't know. He actually likes the hospital, especially the bed and the food!!
I'm just hopeful for December.
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11/10
We were able to come home Monday night! (11/7). It is all very surreal to have all of our family together and sleep in the same bed as DH. We have been apart for 4 weeks! His tumor has not really shrunk, but they were happy that it was not larger. It could also be dead cells, which he could have inside him forever. That freaks me out a bit!
Our dog is staying at grandma's though, as our nurse said, dogs don't wipe their butts, so it's better if he can stay somewhere else while Max is home.
He started to lose his hair over the weekend. To be expected. He likes to pull it out...and then throw it at us.
We went to the hospital today for counts, which were completely normal. He acts like his normal self, it's sometimes hard to remember that he has lymphoma. We go back to the hospital for the day tomorrow to start his next round (3rd out of 5) and we will check in again on Monday to start the hard core chemo again. Hopefully we will be home again next Friday, if all goes well. Although, I like him in the hospital when his counts drop, I'm going to be freaking out, especially since I go back to work 11/21.
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11/14
back to LIJ today for the week for next round of chemo. I can't believe that we are possibly 40% through this! and in 10 days, we are 50% through this! Hoping for few side effects again!
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11/25
We have been home for a week and all is going well. His counts are low (expected), but we went for a visit today and the PA couldn't feel the tumor! We get imaging done on Monday and we will be back for another round of chemo the next week.
Work was a nice distraction (since he was home and doing well). My coworkers are great.
** If we stay on schedule (no infections, blood counts come up when they are supposed to), we should be home for the holidays! We will probably go in on 12/26 again, but I'm OK with that.**
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11/30
His tumor is still there.  It's not terrible news. It could be dead cells. They are removing it and biopsying it on Friday.
If it's dead cells, we continue with the next round, but delayed (so he can heal from the surgery).
If there are live cells, they have to intensify the chemo.
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12/2
Tumor is out. It went from the size of a grapefruit to half a finger. It was attached to the appendix, so that came out too.
Unofficially, the doctor believes it's all dead cells. So we are hopeful for good news...5 days cannot come sooner!
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12/6
Pathology results cannot confirm that all of tumor is dead or was dying. Unfortunately, that means that we have to proceed as if it were alive.
6 more rounds of very intense chemo (as if the last two weren't intense they gave him more than adults can handle!)
This now further puts him at risk for leukemia. But not treating it is not an option. Relapse with this cancer does not have a good survival rate.
To make things worse, DH heard a child pass at the hospital Friday night. A reality check indeed. 
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12/20
We had our "intensified" "industrial strength" chemotherapy. Max did really well. Some throwing up and nausea, but anti-nausea meds seem to keep that in check. Better than his poor roommate, who was throwing up all hours - good thing I'm a deep sleeper, I heard it and went right back to sleep.
Unfortunately, this round brought his white blood cells down to 0. He was home for a few days, and he picked something up from his brother or sister (both stuffy). He went to the E/R sunday with a fever and is back in the hospital for antibiotics and a blood and platelet transfusion.
I'm just hoping that he can come home before the weekend. I'm even thinking about having Santa come whatever day he does come home, so we are sure that he will be home.
He's scheduled to go back 12/29 for the next round. This will be the worst of the chemo over, but we are bracing ourselves - it's cumulative, so it will be worse than this round, even though meds are the same. There will still be 2 more bad rounds, but not as intense and 2 light rounds.
We are hoping for an all clear by April.
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1/14
Sorry it's been a while since my last update. I'm glad it can be a pretty good update!
WE ARE FINISHED!!!!!!!
On 12/21 the second opinion from Boston Children's Hospital (#1 for children's cancer in the country) came back that his tumor was in the process of dying, so chemotherapy was a success! (Pathologists at LIJ weren't sure if the few non-dead cells were alive or dying)
It was a complete shock, b/c the oncologists told us not to get our hopes up and that it would take an undeniable second opinion to change his course of treatment. The results went to the tumor board and they (with the LIJ pathologists) confirmed that all cells were dead or in the process of dying! We only had one more chemo treatment left and it was much more mild than the one we had just gone through.
The 12/8 chemo was awful and we had to go back to the hospital with a fever to get antibiotics. It turned out that it was only rhinovirus (common cold) and he had it for 2 weeks after without ANY symptoms. So telling of how colds are spread. The doctors pushed to release him on 12/23 and something told me to celebrate xmas eve that night. I really did not think we would go back to the hospital, but since it didn't really matter what day it was to us, Max hasn't been in school to know the exact day, we had Santa come that night to our house.
12/24 he got another fever and we went back to LIJ for antibiotics and hemoglobin and platelet transfusions. But Santa had already come, so I was very calm about the visit. Max did say on the ride to the er that night "oh man, on Christmas and everything?" He's been a great sport about all of this (with the exception of when they had him on steroids)
We went home 12/25 after a visit from Santa at the hospital. I have never seen our ward so EMPTY! That made me happy that most kids got to go home!
We went back to LIJ on 12/29 for scheduled chemo and spent new year's in the hospital. It was great to celebrate the last round. It was a tough round b/c it was a 24 hour drip of constant drugs. His body just didn't have any time to recover (usually he had 12 hours out of the day without chemo). They put him on three anti-nausea meds and that controlled the vomiting.
This visit really got to him. We started a daily countdown on the white board in his room. When we got to 2 days left he was going crazy, so we started counting down the hours.
1/4 - He left LIJ from his last chemo treatment (hopefully forever). His numbers have been pretty low since then...well under transfusion levels, but since we do not need to recover for another round of chemo and he is acting "normal" we decided against any transfusions. We'll just wait for his numbers to come up on their own. January 18th is the technical end of his last chemo cycle and will be his anniversary date.
At the end of the month, we will have scans to confirm there are no tumors. We know this time that there aren't any b/c they took his big tumor out on 12/2 and his 11/28 scan showed the tumor on his heart dissolved on its own. (Well with the help of drugs)
He will get scans every 3 months. Relapse is very bad for Burkitts. We get one shot and that's why it's treated aggressively from the start. Relapse is worse if it comes back in the same spot. He doesn't have his appendix anymore, so it can't relapse there - right? At least that's what I'm hoping.
I'm a wreck worrying about relapse, but I have to just live and each day that goes by gets us closer to complete remission! (It doesn't help that DH is a total hypochondriac now! He thinks everything is cancer.)
When the scans comes back clear, he can get his Broviac line out. Then he can resume all activities, including school. His oncologist suggested having him start after the February break, since all his classmates will have to get back into a routine again as well. Hopefully his hair/eyelashes will be growing back at that point. I see the slightest start of regrowth, so I'm hopeful that we will have a good amount in 6 weeks. Really, if it wasn't for his hair loss, you would never know this kid has/had cancer.
I'm not sure what to do now. Really, I feel like if I stop, I'll collapse, so I just have to keep going. I decided to run a marathon in his honor and DH and I have started talking about adopting a little girl on our hospital floor. (although our social worker told us that we need to get one year under our belt before we think about this). Other than that and a few trips planned, we are enjoying our gloriously boring lives!
Thanks for all the good wishes and support! I cannot wait for this to be all a bad dream 
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1/28
We are in remission!
It seems too good to be true. And so fast (the only benefit to having the fastest cancer!)
PET scan came back negative.
one quick transfusion on Thursday and his medical port came out on Friday! It is quite bizarre to NOT see tubes coming out of his chest! But I like this new normal. His younger brother was super excited that he will be able to go on the trampoline with him again!
On the morning he was getting it removed he said "Goodbye port, see you when my tumor comes back" I almost fainted on the floor! but at least he has a lot of humor through all of this!
We had some low numbers, so we are holding off school for another week or so. Which is OK, since it will give us that much more time for some more hair to grow back. His eyebrows are showing the first signs.
He did have a fever last night with some vomiting and some nasty headaches, so we had to go to the ER b/c his numbers were low. Otherwise without the port, we do not have to be worried about sepsis.
This next year it is crucial to monitor him and I'm still pretty scared, but I am trying to hold on to the idea that his doctors took out his port, b/c he will not need them again!
He went to grandma and grandpa's for the first time since the night we took him to the ER and he has a list of playdates he wants us to make!
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7/19
I have not updated in a while. We just got our 6 month CT scan results back. Everything looks good and stable. I can't help but be completely twisted inside until we hear the results!
He went back to school in February. he had trouble catching up, but by the end of the year, he was ahead in reading! Math was always is strong subject but he is having difficulties. We don't know if it is b/ the school didn't send tutors to the hospital or if it is from the treatment. He will be evaluated for "chemobrain" next month since he had high dose methotrexate injected into his central nervous system/brain.
A few kids picked on him b/c of his hair, but for the most part he was a rock star. The girls absolutely love him and every single girl from his class came to his birthday party and just hung on him. There is one little girl that I think has a crush on him. He is torn, b/c he loves his "girl" friends, but his "boy" friends tell him that girls have cooties.
His hair has come in curlier than before. We actually had our first real haircut yesterday! (his last cut was just to cut off the few strands that held on through the chemo).
In May I ran the LI half marathon for Team in Training (Leukemia/Lymphoma Society). It was extremely emotional. I could barely get through the race, I was sobbing hysterically. If anyone has seen Xanadu, the ELO song "Don't Walk Away" came on at mile 2 and it just killed me. I had to grab him before the finish line and have him finish with me. We made Newsday b/c of it!
In June, I ran the San Diego Marathon and raised $5000+ for LLS. It was an awesome experience. I have run marathons before, but I went out with my camera and had people take pictures of me at every mile marker with the names of my donors written on my legs.
6 months to go for one year, where odds of beating this completely increase exponentially.
Message edited 7/19/2012 3:46:39 PM.
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