Friday, March 27, 2009

Mike's GI appointment

Well everyone, we had the GI appointment yesterday. I was a wreck going in because MSKCC jumped the gun and said to be prepared for feeding tube talk. I was so relieved when a feeding tube didn't even come up yet. The Drs and nutritionist at NY Presbyterian were wonderful! They were so easy to talk to actually listened. They offered advice and gave me tips on how to get Mike to eat better and more.

We have to run a bunch of tests, allergy testing for milk and soy and a whole lot of stool samples. Thankfully they agreed to let us wait until Tuesday when Mike needs to be accessed at MSKCC to get the blood drawn for the testing. I also need to keep a 3 day feeding diary and they gave me trials of a couple of some supplements to add to Mike's food so that we can get added calories into him. Don't get me wrong, I know that if the tests don't come back with good results we will probably have to re-visit the feeding tube discussion but for now, it is on the back burner. And I am very comfortable with that.

Matt is heading down today so that I can go to a school fundraiser tonight. Katie is thrilled to get some Daddy & Katie time... she has already asked if she can stay up later so that she and Daddy can hang out since I'm not going to be home and after Mike goes to bed! :)

Well, that's all for now! Thank you all for checking in!!

Have a wonderful weekend and please keep those prayers coming!! :)


Thursday, March 26, 2009

Daddy's Shaving his head!!

Ok, everyone... I'm using the power of the internet to raise money for an amazing cause!!

St. Baldrick's Foundation raises money for pediatric cancer research and they do it in an amazing way. There are events all over the country where people come and shave their heads in support of kids suffering from cancer. This year, Mikey-Mike is the honored child at the event here in Rockaway Beach, NY at the Irish Circle. The event is taking place on May 30th at 3 PM. It's going to be an amazing afternoon!! :) The volunteers are working so hard on the event and it's such a wonderful charity to support. We are so blessed to be a part of it.

Now, here's where you come in... On the right hand side of my blog you will see this picture...... after you read this post click on it! It will take you to Matt's St. Baldrick's Foundation Participant page!! :) Yep, that's right, Matt is shaving his head for Mikey-Mike and all the other kids that are suffering from cancer.

There are so many ways that you can help... you can donate by clicking the Donate Online button on Matt's page, you can participate in an event near you, you can come out that day to show your support and meet Mikey-Mike, and above all, you can please keep Mikey-Mike and all the other kids suffering from cancer in your prayers. So, please, if you can donate we would appreciate it! Just follow the dancing St. Baldrick's Leprechaun on the right to Matt's page and click on the donate online button!!

We hope that you can come out and support such a great cause!! :) Hope to see you on May 30th!! :)



Wednesday, March 25, 2009

Our latest PDH & Ophthalmology visits... & Katie's report card!!

Hi everyone...

So, after our eventful weekend we had another appointment on Tuesday in the PDH, PT & OT appointments AND the Ophthalmology visit.

As soon as we got to MSKCC we had Mike's blood drawn. Getting it done first thing in the AM means no waiting in the IV/Blood drawing rooms and the pedi lab doesn't get backed up so the results come back rather quickly. The poor kid HATES it. We have a system though... whoever comes in w/ me (usually my Dad) and I will have a job... one of us stays w/ Mike and the other checks him into the IV room. The girls in the IV room know to talk to the lady that does the fingerstick and have her get everything ready so all we have to do is walk Mike in, sit in the chair w/ him and hold his finger out. He SCREAMS the entire time though. Accessing is worse b/c you really have to hold him still for that needle. We have found the way that works best to hold him down for both. I know it doesn't hurt him (the fingerstick is a pinch and he has Emla cream on when we access him) but it is still hard to hold him down while they get the blood they need.

Then, as soon as we were done that, Mike had PT & OT. They are hard on him. His muscles are so weak it hurts and he is so scared. It's like he has lost his center of balance and is so afraid of standing. He cries when they take him to the room to 'play' and he cries almost the whole time in there. I hate sitting there in the waiting room b/c you just hear him crying and yelling for me... It is so hard when you know he needs the therapy and you can't be there to help him. :( They said that he did do some weight bearing so that's a plus! His upper body strength has improved also. The tremors in his hands have gotten better, they are still there but not as often. The not walking really has me concerned. Is it the effects of the chemo? Is it the tumors? We have no idea, and probably will have no idea so I'm doing a lot of hoping & praying that he starts to gain more strength in his legs and starts to walk again.

Anyway, once the therapy sessions were over we went back up to the PDH to see the Drs. We were brought back quickly b/c it was 11 and we had a 12 o'clock appt w/ Ophthalmology. His bloodwork came back great but it turns out he had some fat in the stool that they cultured. They said they were glad we have an appt on Thursday to see a GI doctor at NY Presbyterian/Cornell because that was a possible malabsorption issue and that I shouldn't be surprised if they wanted to re-visit the talk of a g-tube. Needless to say, I am really anxious about the appointment tomorrow. I will update on that when we get home or on Friday morning.

After seeing the Dr in the PDH it was time to go to Ophthalmology. Well, this was the BEST appointment of the day!! :) The Dr didn't see any optical nerve swelling anymore and he said the muscles looked great and are working the way they are supposed to. We don't have to go back to him for 6 months!! :)

It was report card day at Katie's school yesterday too!! I was going to go at night but as Matt, Mike & I headed home I decided to stop and get Katie's report card. Her teacher said wonderful things about her. She told me that she really has adjusted so well and is friendly with everyone! She does excellent work and her grades were excellent!! :) I am so proud of her doing so well through all of this. And, to top off the good news about Katie... her top left tooth fell out!! :) She was THRILLED!! It was making her crazy but she was too chicken to pull it out herself! LOL

And, onto other news... I got a call from Dana Farber Cancer Center. I don't know if you remember or even if I posted it here but I sent Mike's pathology and clinical papers to Dana Farber for a 2nd opinion on both the pathology diagnosis and treatment/clinical issues. They said that based on what they have done so far, they find the same as MSKCC... we are dealing with an unclassifiable lepto-meningial (spine) tumor. The Dr I spoke to was very nice and very willing to talk to me. I gave them permission to talk to the hospital in Florida and get any and all tissue that they have and that I would sign whatever was needed for that so that between DF & MSKCC all of the tissue taken in the 2 biopsies done in All Children's would be up here. She said that they would continue to work on the slides that they have not stained so far and will call me in the next week or so with a final answer. The Dr I spoke to said that at this point she doesn't think that they are going to identify this tumor and that it would end up being officially unclassifiable. I am pretty upset about it. Don't get me wrong, I knew sending it to them would most probably we would most probably get this answer but I hoped & I prayed that they would see something that MSKCC, All Children's and Duke didn't. I have spoken to many people about different places to send tissue and summaries to and I have other places in mind but I am going to wait for the offical word from DF when they are totally done with looking at everything.

Well, that's it from this end until after the GI appointment! I hope you are all doing well... Please keep the good thoughts and prayers coming!!


Sunday, March 22, 2009

Fevers, Chemo and the Croup... Oh My

Good Morning everyone,

I know, I know... I've been slacking again. I am sorry. Thank you all for sticking with me and checking in to see what is going on with Mikey... and all of us. I hope that you are all enjoying your weekend. It's been an interesting week and a half for us here.

As you all know we got wonderful news on March 9. It seems that the Temodar has been keeping the tumors from growing. The MRI was stable :) Since his counts were great that day we didn't have to go back to the PDH until March 18th when Round 3 of chemo was scheduled to begin. When we got there on 3/18 Mike was flirting with a fever. His temp was 100, 100.2, 100.1, 100.4... and he was EXTREMELY cranky. I mean, Mike can be cranky on a regular basis but this was CRANKY cranky. So, they drew blood and more blood and took a stool sample and sent us home without chemo. I was able to give him Tylenol at home through the day and the fever stayed down. By Thursday morning at 9 it was back to 98 and all was ok.

When I took Mike in on Friday his counts were significantly lower than they were on Wed. The theory is that he was fighting whatever was going on and now we are getitng a clearer picture of his counts. His WBC was 4.2, HGB 13.3, Platelets were 180 and ANC was 1.4. All still in the normal range (except the ANC) but there was a significant drop in all of them since the 9th. They weren't low enough for us to start chemo though! The Dr called in the prescription to the children's pharmacy down the block from MSKCC that compounds the chemo and I was able to pick it up in less than an hour. Since he seemed to be doing ok we drove up to my in-laws for the weekend.

Then came Sat night... I put Mike to bed and then around 11 I heard Mike coughing. It was that seal bark that can only be one thing... the croup. I went back downstairs to get a couple of things and when I walked back in the bedroom and heard him breathing. Now, Mike is the kind of kid that when he is sleeping you need to go put your hand in front of his face to know he is breathing. It was a heavy breathing with a whistle-type noise at the end of the breath. So, of course, I paniced and called MSKCC's urgent care. We had seen the pediatrician on call in the PDH before so she knew who Mike was and was asking all sorts of questions. We decided that since his breathing was heavy I should bring him in. So we started to pack up. Matt had to work a double shift in Manhattan on Sunday so I had told him that he should just stay at his mom's with Katie and I would go in myself but he wanted to come down with us. He dressed for work b/c we figured we'd be there a while, left Katie at my in-laws sleeping and drove to Manhattan. We weren't there too long and the Dr said that while his breathing was heavy there was nothing in his lungs so we were sent home. Poor Matt stayed in the waiting room chairs sleeping so he could just go right to work at 6 while Mike & I headed back to Rockaway to my mom's at 3 AM.

He is doing much better now so that's a plus. He took the chemo for the whole 5 nights like a champion!! :) So, we have another round of chemo in April and then we have the next MRI on May 6.

I have more to tell you all but I'm going to do it in the next post... I hope you are all doing well! Please keep those thoughts and prayers coming...


Monday, March 9, 2009

Short but really sweet!! :)

Mike's counts were wonderful again today. The doctors are so pleased with how he is doing!

Mike's MRI went well. They were able to get him the anesthesia and he fell asleep with no issue. He is such a champ! He woke up on his own and as soon as he did he was asking for Cheerios and water! LOL

So, we were able to wait at MSKCC while Dr. D went to look at the MRI and we got great news when he did!

The MRI was unchanged! The Temodar has seemed to stop the growth of the tumors!

Thank you so much for all of your thoughts and prayers! They are working!! Please keep them coming... we still have a long road ahead of us! Hopefully he will continue to do well and the Temodar will keep up the good work!! :)

I'm off to play with Mikey-Mike and to get ready to have a celebration dinner with the fam... Love to you all!!


Friday, March 6, 2009

St. Baldrick's Foundation for Mikey-Mike!!

Hi everyone...

~~~~Just a warning... I am hyperlink happy in this post! :) The title of this blog is a link to Mike's tem page and anytime St. Baldrick's or Mikey's Miracles is written just click on either and you will be taken to the Irish Circle event or Mikey's team page! :)

When I was approached about this a couple of months ago by a girl that I used to babysit (yes everyone, that made me feel quite old!) I had no idea what it was all about. St. Baldrick's? I had never heard of it. Then I researched it. What an amazing charity!! People all over shave their heads in honor of kids suffering from cancer. All of the money raised goes to pediatric cancer research. I LOVED it immediately! I was so touched when K asked if her team could do the event in honor of Michael. I didn't hesitate to say absolutely! So, K got in touch with the event organizer and they made Mikey the honored child for the St. Baldrick's event in Rockaway. K also made a team, Mikey's Miracles!! Matt, K and family friends are coming out to shave their heads on Mikey's Miracles team! I put his story up and people that we never met are now making Mike the child that they are shaving in honor of! It's amazing how many people shave their heads and show such amazing support for the kids and their families.

I know this is a hard financial time for everyone so if you can't shave your head or donate I fully understand. If you live close enough and want to come join us for a wonderful day please do so! I would love to see you there!! :)

Here's the info
St. Baldrick's Foundation Kutting For A Kause event in Honor of Mikey-Mike
Mikey's Miracles Team
Saturday May 30, 2009
3PM at the Irish Circle in Rockaway Beach, NY

If you have any ??s please feel free to send me an e-mail at

Thank you so much for all of your support!! Please keep those prayers coming!!

Love to you all,

Thursday, March 5, 2009

Long time no post...Sorry... this one's gonna be a long one! lol

Hi everyone...

I am sorry it's been so long! Things here have been nutty! Matt got the job transfer and is now working in Manhattan, I was feeling a little under the weather and the kids have been keeping me hopping!
Katie has been doing great. She's marching in our neighborhood's St. Patrick's Day Parade with the cheerleaders this Saturday. She's loving school and doing so well! She does still ask about Florida and if we are going back and tells me that she misses her friends. Even though I know she misses Florida she has made quite a few friends here and really has carved out quite a little place for herself. I am so lucky that she is such a happy and adaptable kid.
Matt is ok with working in Manhattan. I know he really liked living in Florida and that he is not a fan of living back in NYC but he knows how important it is for him to be as involved as possible in all of this and I think that he really wants to be as involved as he can be. The kids have been thrilled to see him so much more. Last week we saw him for 3 days and he just left from being here at my mom's for the past 2 nights. It was good because he was able to come to MSKCC with us yesterday for Mike's PT & OT sessions.
I have to admit, as good as it is for Matt to be there for Mike, I wanted him to be there for selfish reasons. It's hard bringing Mike there. Mike is a smart kid, he knows when we go to a certain elevator bank that we aren't going to 'number 9' as Mike calls the Pediatric Day Hospital but to the first floor and the PT/OT offices. It's odd to think that he is ok with going to the PDH but really, despite the accessing and check-ups, he likes it up there. He likes the play room, he likes the activity, they have video games and computers and the poking and checking is only a couple of minutes long. And I am there with him every step of the way. I don't leave him anywhere up there unless he is in the playroom by my dad or whoever came to MSKCC with us that day. For all of the good things that he likes about the PDH, there are so many things he doesn't like about PT & OT. PT and OT are hard on him. They work him for 45 minutes each session, he is uncomfortable and he is afraid. And I am not there in the room. I sit outside while he builds himself back up in there. I can't be there because he relies on me for too much and he won't do as much if I am in there with him. So, I hand him over to the therapists while he screams and cries and I sit there, listen to him scream and cry in the room and wait for them to bring him out. I needed Matt to see that, I needed him to hear it, I needed him to know that sitting there waiting for Mike to come out of PT and OT is as heart wrenching as any other appointment when they are poking him. And still, while it is exhausting and heart breaking to sit there, he comes out and immediately is ok when I take him from the therapists. He laughs and says good bye and asks for his Buzz Lightyear jacket and SpongeBob hat. I can really learn so much from this little boy. He amazes me at every appointment.
So far, the therapists have not come out with a bad report. Aside from the screaming and crying, he does it all for them! He throws the balls, he rolls over, he builds with the blocks, holds the crayons and, get this... he will stand with their help! his knees will buckle but he will get up as long as they are holding him. That has been great but on Wednesday he shocked me. It was the best surprise! The teacher from the Board of Ed, S., was here working with him. She was on one side of the coffee table in the living room and Mike was sitting on a stool on the other side. He wanted something that was on the floor. All he kept doing was pointing and saying 'that one', 'that one'. She didn't know what it was that he wanted and there were a bunch of things on the floor so he finally got mad enough, reached out to the table and STOOD UP BY HIMSELF holding onto the table!! I was soooo excited! He hadn't initiated standing by himself since Christmas Day so this was HUGE! The therapists were thrilled today when I told them that he did that.
Anyway, on top of how well that he has been doing with PT & OT, his counts have been staying strong too. His numbers are all in the normal range and he's been acting great. I think his favorite activities are playing with Katie and singing at the dinner table! He is such an amazing kid!
Now, even though I am being cautiously optimistic about things I am losing my mind about Monday. I am a mess about Monday. If you don't know already, Monday is d-day, the MRI. I am hoping and praying with every part of me that we get good news. Please, please, please keep us in your prayers that the MRI shows something good!!

I hope you all have a wonderful weekend! I will be sure to post pictures of the kiddies in the parade! :)

Love to you all,