Yes, the saga continues and nope, there is never a dull moment.
On the plus side, Mike took all 5 nights of chemo like a champ! I was so thrilled!
On the down side...On Saturday when I got home from Katie's birthday party I woke Mike up from his nap to get him ready to go up to my in-law's house. When I went to change his diaper I noticed that his left testicle was big again. I immediately called MSKCC to talk to the fellow but wasn't beside myself worried about it. I figured it was the fluid from the VP shunt draining again and since he isn't walking and getting around as much it was pooling in his scrotum again. The pediatric fellow said that as long as it wasn't red, hot to the touch and he wasn't running a fever and he wasn't vomiting it was ok to not come in to the urgent care that afternoon but that I should bring him in on Monday morning at 8:30AM. So, Matt & I drove upstate for the night.
By the time I put him to bed Sat night everything looked good. It looked like it was back to normal. Sunday morning around 10 it looked like things were puffing up again and then that afternoon it was ok again. So, off to MSKCC we went this morning! Thankfully, my BFF, J, was able to come in with Mike & me. It always helps to have another set of ears! The surgeon took one look and feel and said that he felt the hernias in both sides of Mike's scrotal sac. So, as of right now, surgery is being scheduled for Friday and if that is the case then we will have to go in on Wed for pre-op. :( We had to cancel the PT appointments that we had set up for this week so that we didn't aggravate the hernias any more.
Please keep Mike in your prayers. I hope you are all doing well!!
Love and hugs to you all!!
Monday, January 26, 2009
Posted by Chrissie at 2:01 PM
Saturday, January 24, 2009
I know, our appt was Wednesday and it's Saturday. That's 3 days and I haven't updated. You need to understand something though... Katie's birthday was on Wednesday. She turned 7. She has been talking about turning 7 since the day after she turned 6! On New Year's Day she woke up yelling, 'It's January! Finally! It's my birthday month!' So, while Wed was an important day for Mike, it was an important day for Katie too. And so was Thursday and Friday and today. I swear, there isn't a year that goes by that Katie doesn't have at least 3 birthday cakes and a week long celebration! This kid LOVES her birthday! LOL
So, now that you know why I have been MIA now I will fill you in on what happened on Wed. We saw Dr. L. He is very nice and very informative. I was thrilled when he said that they were ok with me trying to administer the chemo orally for the 2 rounds and then re-visiting the g-tube discussion after the scans come back and show that this Temozolomide (Temodar) is doing what it needs to do. Then he dropped the bomb... we were starting that night. They called in the prescription for the chemo and an hour later we were heading home with a compounded liquid chemo for me to give to Mike. We got it at Cherry's Pharmacy in Manhattan, right up the block from MSKCC. What a great pharmacy, by the way! They are mainly a kids' pharmacy... flavor EVERYTHING, they compound pills into liquid or other forms for the kids that can't take pills, they sell all sorts of kid OTC meds, they have a train on the ceiling and a train table on the floor. And, they are great and the Drs at MSKCC trust them to give me the right chemo... so I guess that means I have to trust them too, right?
Anywho... we got home and I dreaded the chemo time all day. They told me that my best bet is to give it to Mike at night so he can sleep through the worst of the nausea. The catch is, that he has to take it on an empty stomach. For Mike the grazer that was going to be hard b/c you very rarely find him without cheerios or waffles or pretzel sticks in front of him! Not to mention that there went my idea of hiding it in ketchup and eggs, or bribing him with cookies or waffles... I just had to give him the meds. I had to give him Zofran (anti-nausea) and then give him the chemo 1/2 hour after that. The first night went AMAZING! Don't get me wrong, the idea of drawing up chemo to give to my 3 year old son was horrible. My hands were shaking and I just kept telling myself that this one is going to work, this is going to be it. I mean, there was some level of semi-denial about what you were giving him when the nurses were administering it. You could blame them when he was sick, you could say that they were trained and they know what they are doing when they give him this medicine. I worked on Wall Street, I did privacy compliance work and I'm his mom, am I really going to be able to do this? Well, I did it. I wish I could say that I didn't surprise myself, but I did. It's amazing how you really do just do what you have to when you need to.
My mom held him in a cradling position and he took both the Zofran and Temodar like a champ. Don't get me wrong, he cried and he fussed but once I got the syringe in his mouth and squirted the meds in he took them!
Last night, Friday, was night 3 of 5. He has been great taking it all 3 nights. Just 2 more to go! Wish us luck that the next 2 go as well as the first 3!
I am off to Katie's birthday party with her friends for birthday cake and celebration number 3 and then we are heading up to my in-laws for cake and celebration number 4! Chemo will be at my in-laws tonight... I hope we do as well up there as we are doing down here!
Please keep those prayers coming! I hope all is well with all of you and your families!
Love & Hugs,
Posted by Chrissie at 9:18 AM
Friday, January 16, 2009
On Thursday, shortly after I wrote about Tuesday, I got a call from the Drs at MSKCC. The Dr that called me was Dr. B. He was the Dr. that we saw on Tuesday afternoon when we got the MRI results. Anyway, Dr. B said that he spoke to Dr. G and Dr. D and they came up with a new treatment plan. They feel that the best chemo drug to try now is Temozolomide. It would be given once a day for 5 days and then he would have 23 days off of the meds. Then start the once a day for 5 days and 23 days off again. After the 2nd round we would go in for another scan to see if this treatment is working. If it is this treatment could go on for at least a year. Temozolomide (or Temodar) is an oral chemo drug that interferes with the DNA reproduction of the tumor cells. The side effects are as concerning as the last protocol, like they are with every chemo drug. The major ones seem to be nausea/vomiting/diarrhea and myelosuppression & the dropping of blood counts, so it looks like there will be many more transfusions in our future. (So PLEASE donate in Mike's name!! Unfortunately you can only donate for him AT MSKCC because they don't accept blood from anywhere else. I will send you the info if you need it!). Thankfully the peripheral neuropathy issues aren't listed as a major side effect so I am hoping that between the new chemo and the physical therapy he will get back on his feet soon!!
One of the problems with deciding to go with this treatment is that it is an oral chemo. And not just any oral chemo, it's a pill. Now, anyone who knows Mike should know that his diet consists of Cheerios, pretzel sticks, Belgian waffles, pancakes, french fries and eggs with ketchup. He has always had a horrible diet and it has only gotten worse on chemo. So, since sticking myself with hot pokers once a day would be easier than getting him to take a pill that is going to make him feel sick they want to talk about putting in a G-tube. A G-tube is a temporary (but long term... can last for 6 months before needing to be changed) feeding tube placed in Mike's abdomen. I will have to administer the chemo at home through this G-tube. I am a mess about possibly having to have this done. I guess a plus to this g-tube is that I will be able to give Mike nutritional supplements through it as well to ensure that he is getting the calories, vitamins and minerals that he needs to get through this chemo like the champ he is.
Now, onto my issues... I am losing my mind thinking about doing all of the G-tube stuff at home so I am calling all nurses and medical professionals to help teach me and watch me until I am comfortable doing it on my own!! Any advice pre-G tube you can give, any post-G tube teaching and tips you can give are GREATLY appreciated! And if you can come over to check and help me as I am doing everything the first week or two I would LOVE that... send me an e-mail, a message on Facebook or call me and I would love any help and/or advice you could give me.
So, we go into MSKCC on Wednesday (which ALSO happens to be Katie's 7th birthday!! :) YAY!) to talk to the Neuro-Oncology team about the new chemo and the Surgery Team about the G-tube. I have a bunch of ??s to ask already and I am sure there are only more to come to me. My mom is coming with me so she can be another set of ears when I am talking to the Drs and my sister E is coming to entertain Mike so I can actually carry on a conversation with the Drs. I am hoping to get answers to all of my questions so that I can be comfortable with my decision.
Well, that's it for now... I will update after our appointments on Wednesday. Please keep those prayers coming! Sending love and hugs to you all!!
Posted by Chrissie at 12:41 PM
Thursday, January 15, 2009
Well, here I am, back again. It has been a very long, hard week for us here. Mike is still not walking and he seems to still have major 'off centered' moments, leaning to one side, only sitting in the 'W position' and just not comfortable so much of the time. He has started to stand for more than a minute at a time so I am hoping, since we are about 17 days after the last chemo treatment the VinCristine is coming out of his system and he will slowly regain strength and skills that he has not used in 2 weeks and counting.
So, Tuesday my dad and I brought Mike to MSKCC for his scans. He was scheduled for a 10:30 MRI to be immediately followed by a spinal tap (LP) and an EMG (a neuro-physical exam that tests nerve conduction). We had to be there at 8:30AM with a very hungry little boy! He had to be NPO from midnight because he had to be put under anesthesia for the tests. He was a champ though. We took him to get accessed as soon as we got there so that we could get blood work back and get him checked out quickly and he could play in the playroom before we went to the MRI. His levels came back great!! I guess not getting chemo for 2 1/2 weeks REALLY helps you bounce back! His WBC was 4.9, HGB was 11 (the first time it's been this high in about 2 months!!), ANCs were 2.0 (YAY!!) and his platelets were 166. It was great to see everything coming back and I could tell they were going to be good because he is definitely acting a little better. He is interested in doing things again and wants to play. The problem comes in that as soon as he puts his feet on the floor he hurts. It is heartbreaking to watch him want to walk and want to go and be the active 3 year old that he has been but he can't do it. I hate watching him like that, I hate that he is more comfortable laying down or being held than running around and being 3. It is hard because he goes from wanting to lay on the couch to playing on the computer and he gets frustrated that he can't get up and go on his own. He has to wait until I can pick him up and carry him. Usually he decides he wants to move just 2 minutes after he decides he is hungry and wants eggs and ketchup or a waffle and I am in the kitchen cooking! I feel so bad because he wants to do so much but gets so frustrated so easily because he can't.
So, anyway, he came through the anesthesia and testing like a champ. He was coming out of anesthesia by 1/1:30 and the NP told us that we could wait b/c the Dr that was on clinic duty that day could go upstairs and look at the MRI. So, we waited and waited... At one point my dad asked Cheryl where the Dr was and she said she just spoke to him and he would be back in a few minutes. 30 minutes later I went to Cheryl and asked her. She said she didn't know why he was so long but he had looked at Mike's scans and had to look at someone else's and would be down shortly. I said Dr time is so unfair because to them it's just 20 minutes, to a mom those 20 minutes are 50 years off of her life. Finally, he came back down and we were called into the exam room. We got news that we were not expecting. It was not horrible but it was not good. The tumors have stayed the same in the spinal area but they have grown around the brain stem. The Dr that we saw on Tuesday feels that with even this small growth that the neuro-toxicity issues that Mike is having (the loss of muscle use in the legs, the foot drop, the tremors, droopy eyelids... ) are VinCristine related and not tumor growth related. I, and he agrees, feel that the risks of this drug are now very much so outweighing the benefits of it. My feeling is that if they could have looked at the MRI on Tuesday and told me that the tumors were shrinking and the 2 drugs he is on are doing the job that they are supposed to do and getting rid of this stuff in Mike I would be able to try to take the side effects as they came and deal with them as we had to. They can't tell me that, in fact they are telling me that they are not working on at least part of the tumors. So why should I put Mike through these debilitating side effects to have tumor growth? The Dr on Tuesday said that there are many more chemo drugs that we can try and that the team will meet and discuss what one(s) they feel will work best on the tumors that Mike has. I called our primary neuro-onc Dr yesterday and e-mailed him today. I am waiting to hear from him so that we can decide what to do start him on next. I hate that we seem to be back to square one. I hate that all of this that Mike has been going through is because of drugs that are not doing what they are supposed to be doing.
So, now I wait. I wait for the neuro-onc team to hash out what drugs they think will be the next course of treatment. I wait for the call to come in and discuss what the options are and to decide what to do. And while I am waiting I will make calls to other cancer centers to see if they will be able to accept pathology slides and frozen sections of Mike's tumors to have more eyes looking at everything so that hopefully someone, somewhere will be able to identify what is growing in Mike and we can then make a more educated decision on what chemo to use. And, of course, I will take care of Mike and Katie and be praying and hoping that I make and have been making the best decisions possible for my little guy.
He is awake in his crib and I don't want to leave him up there any longer. I need my Mike hug fix for the morning! :) I hope that you are all doing well. Please, please, please continue to keep the prayers coming. Pray for Mike that he has the strength to get through all of this and that the drugs that are in his system wear off soon so that he can get back to walking and running and being the nutty 3 year old that he is. Pray for Katie that she continues to be an amazing big sister and that she asks the questions that so often fill her with worry. Pray for the oncologists that they make the right decision on drugs for Mike based on the child and his tumors and not let their egos get in the way. Pray for the pathologists that they see something in Mike's tumors that they didn't see the last time they looked and we finally get answers. Pray for our family and friends, if for no other reason than that they have been so wonderful to us. And lastly, please pray for me (and Matt too) that I/we have the strength and health to care for our kids through all of this and that the decisions we make are the best possible decisions we can make for Mike and for Katie.
Thank you so much. Sending our love and hugs and prayers to you all!
Posted by Chrissie at 7:52 AM
Friday, January 2, 2009
Well, Mike did indeed need a transfusion today. We got his numbers back and his WBC was 3, platelets were 248, ANCs were 1.2 (ugh!) and his hgb was 8.1. Now, Mary (our favorite NP ever! LOL) said that they usually send kids home at that level but she didn't like Mike's coloring so she wanted to make a clinical decision on whether or not to transfuse him. So she looked him over, took his temp (which was normal), listened to his chest (which was clear) and then listened to his heart. She thought his heart rate was a little fast. Then she took his BP and it was a little too low for her comfort level. It was 80/52. She said that between his pale color, fast heart rate and low blood pressure she felt that even though his hgb was not below 8.0 he needed a transfusion. So, off to the bed area we went.
Our nurse accessed him and we waited for the blood. I gave him the Vistaril (an antihistamine to prevent an allergic reaction) and Tylenol (to prevent a transfusion induced fever) and we waited for the blood. It only took 1 1/2 hours to come up this time! (Much better than the 3 hours that we waited for the first transfusion!) The Dr came in just before the blood came up and told me that he wanted to see Mike walk. Since Mike's balance and walking have become an issue lately I was glad he wanted to do this, however, since Mike was falling asleep it really wasn't the right time. So Dr. G asked me to get him when the transfusion was done and he would watch Mike walk. I did that and Dr. G noticed the drop foot and balance issues right away. He seemed to think that the VinCristine was causing these issues so you can only imagine how glad I am that Mike isn't getting that drug again until our next chemo day on 12/21! It seems like every side effect that can come from that drug is hitting Mike. Mary said today, even the side effects that affect the 'less than 1% of patients seem to be coming out in Mike'. It is crazy. I was honestly, and as odd as I am sure this sounds, glad that the balance issues came back. At least we can lean more towards a reaction to the meds than the tumor growing. I will be honest, I said it last week to Dr. B, today to Mary and Dr. G and I'll say it again now... if the drugs are doing all of this but are killing the tumor cells I will pick him up and walk him wherever he wants to go for the next year and change if it means getting rid of these tumors. And so, now we wait until 1/13 to see what is going on.
Anyway, back to the transfusion...It took about 2 hours to complete the transfusion. He slept through most of it since it was not only naptime but because they gave him a nice size dose of an antihistamine! He seemed like he was feeling ok when he woke up, he played in the playroom with my dad for a few minutes, the Dr came in and observed him and then we headed home. Mike is acting so much better tonight than he has acted in weeks. He wants to play , he wants to talk and laugh, he is so much more engaging tonight. He just seems so much livelier. It's amazing what the transfusion does. Even though he is having a hard time getting around he is trying, and laughing and playing and yelling at his sister. lol It makes me feel so much better to see him feeling so much better.
I want to go back to the blood for a minute. There is something I didn't say before because I really want to talk about it. When the bag of blood came up, it had a pink tag on it. It was our first pink tag. That pink tag let us know that the blood was there because of someone that took the time to go in and donate blood for Mike. It was a pink tag of support. And while the blood that he got was only from one person out of 26 that donated for Mike, the 25 other people were there on that tag too. They were all there on that one pink tag that said Direct Blood Donation Intended Patient: Michael W...... . I think I looked at that tag every few minutes during the 2 hours it took to transfuse Mike. Here is a picture of that tag. I had to take it, it meant so much to me to see it there.
The fact that we don't know who the blood is from is both wonderful and frustrating. It's wonderful because that means that so many people can go in and donate and be a part of our family forever, either because Mike got their blood or because they just went in to donate in his name as a way to support us in all of this. All of you that have donated for Mike so far, those of you who will donate for Mike in the future, those of you who will go back again and again to donate blood for Mike and those of you who will go in and donate blood even after Mike gets better because some other child (or adult) might need that blood, have a special place in my heart. I will never forget what you have done and are doing to help us and how you have supported us. On the other hand, it is frustrating to not know who it is from because I just want to hug that person. To say thank you for helping my little boy in a way that I can't because of that stupid antibody M. To let them know how much I appreciate that Mike is getting blood to help him feel better from someone that knows, cares and supports him and/or someone in our family. Honestly, as wonderful and frustrating as it is, it just means the world to me to know that so many people that know us or know someone in our family or know one of our friends went to Sloan to donate blood for Mike. I know Mike only received the blood from one person today, and I know that he will only receive the blood from one person every time he needs a transfusion but so many other families will have someone they love feeling better because of the people that came in to donate for Mike. The support we are getting from all of you when you go to donate blood is being passed on to other families. So you are not only donating for Mike but in honor of Mike. And that is an amazing thing.
I don't really think that I have the words to express how much it means to me, and honestly, I am so exhausted I can't go on much longer. So, for now I will just say thank you. Thank you to all of you who ask about Mike, who call and/or text, who send e-mails and cards, who want to come visit but can't because of distance or his counts not allowing it, who do come visit when they can and his counts permit it and to those who donate blood for him.
The kids are asleep and it has been a long day so I am signing off. Please keep those prayers coming. Pray for Mike to keep his strength while he is dealing with and fighting off these side effects that are coming one right after the other, pray for wonderful scan results on Jan. 13th, that the chemo is getting rid of these tumors and that my little boy will have a long and happy life. We appreciate the prayers and will continue to keep all of you in our prayers as well.
I hope that you are all doing well! Have a wonderful weekend!
Love to you all,
Posted by Chrissie at 7:39 PM
Thursday, January 1, 2009
I hope you all had a safe New Year's Eve and that you all have a Healthy, wonderful & Happy 2009! I rang in the New Year quietly at home hoping that Mike and Katie would sleep through the fireworks going off outside of the house. 2008 was a tough year for me, from the miscarriage in April to Mike's diagnosis in September and those things tend to outdo the good things that came from this year.
So, I had seen this on one of the blogs that I read occasionally. I think its a great idea and wanted to focus on some thing in my life that I am thankful for.
A - Z Gratitude List!
A- Applesauce... for a while it was one of the only things Mike would eat! I don't know what we would have done without it! lol
B- Best friends...they are always there to make me feel better, listen and help me. They are more than friends, they are my family! and Bed Time!! lol thost few minutes of quiet children as they are falling asleep is such a peaceful time!
C- Cell Phones, Cheerios and Crock Pots!
D- DVDs and the boxes they came in... Mike's best friends! lol and the Doctors that went to school for all of those years that are helping Mike to fight the tumors...
E- E-mail a great way to keep in touch with family and friends
F- FAMILY & FRIENDS!! I have the best support system, they have been there for me every step of the way and are just the best! I have the most amazing and wonderful family and friends!
G- Glad Press & Seal!... it's been a Godsend for covering up the Emla cream that we need to put on the mediport area of Mike's chest so that he doesn't feel the access every week and doesn't adhere and irritate the skin like bandages or tape!! and of course, Google... a good friend yet at times it was a worst enemy...
H- Home!! & Heinz ketchup because Mike likes a little eggs with his ketchup!
I- Ice Cream... a great bedtime comfort snack! lol
J- Jokes... because sometimes I need a good laugh
K- Katie! :) No explanation necessary on this one! lol
L- Lenny's... wonderful NY Italian comfort food just a few minutes away in Howard Beach! lol
M- Mike! :) No explanation necessary on this one either!! lol
N- Nurses! Amazing, wonderful, angel nurses that work with Mike and the other kids in the PDH and put up with us crazy moms that ask 100s of questions! lol
O- Ocean... it's a sense of calming... when I get out by myself I just go down there to smell the salt air and to listen to the waves and it makes me feel a little better
P- Parents - they have been wonderful through all of this! I couldn't ask for a better support system... AND Portable DVD Players, Mike wore his out after 24 hours a day for 2 weeks during his stay at All Children's, it was a lifesaver for me and my mom when we were with him!
Q- Quiet time!... there is definitely not enough of it but the few minutes of it that I get are wonderful!
R- Reading! It takes me to another world, even if it's just for a few minutes. I don't mind that every once in a while these days!
S- Sisters! Again, no explanation necessary!! They are the best!
T- Television... see the same reason I have for reading! lol
U- Umbrellas... because I can't think of anything else that starts with a U! lol
V- Van that is mini... it makes Mike happy to see Mommy's blue car when we are leaving chemo... and it brings us home from the hospital every week! :)
W- Wine...because some days I just need it!!
X- Xanax... even though I haven't taken it, just knowing it's in the medicine cabinet is comforting! lol
Y- Yellow... because it's a cheery color
Z- Ziploc bags...for anyone with a child in diapers, you will know why!
So, there's my A to Z 2008 grateful list. May 2009 be a Helthy, Wonderful & Happy year for us all!!
Love & prayers to you all,
Posted by Chrissie at 10:00 AM