Hi Everyone!! :)
Well, Mike had his first full on conversation with the oncologist, Dr. D today!! It was hysterical... Mike was telling him all about his DVD player and the guys on Sesame Street. It was so nice that he was talking to him and not screaming at him but at the same time I felt that pang of, my son is actually comfortable talking to an oncologist and being at a cancer hospital. When did all of this become routine?
Anyhow, onto the good part of the day! I need a happy post!! LOL Since Katie is off from school this week she came with us to MSKCC today. She loves coming in with us, it makes her feel like she is as big a part of this as she can be. It is great for her to come and see the kids playing and to be involved as much as possible. Not to mention that having her there makes Mike all that much happier! She really is his best medicine!! :) So, we got there early today to get all of the bloodwork done. It only took about an hour for all of the tests to come back. His liver function tests were great and his counts were phenomenal!! His WBC was 10.5, Platelets were 253, HGB was 12.9 and his ANCs were 6.4. WHOOHOO!! :) He was weighed and was the same weight as last week which I am thrilled about and he grew 1/2 an inch as well!! :) I raised my concerns to the Dr about how he is feeling so great could this stuff really be working and he said that they have seen great results with the Temodar so that my cautious optimism is definitely a good thing.
From that Neuro-Onc appointment we went to PT and OT. My dad made Katie & me leave the waiting room because while we all know he will do better if I am not there, we all also know that I HATE listening to him cry, especially knowing he's hurting, and that I would want to go into him and help him. So, Katie & I went to the cafeteria for a little while ( I think I could only bring myself to stay for about 20 minutes) and then we went back to the PT/OT room. I went in to talk to the therapists after the PT appt and they gave me some more exercises to do with Mike. They all feel that his lower back is as much of an issue as his legs might be so I have a lot of work to do with him at home. :( OT went well!! He really seems to like OT. It's a lot of playing and doing things that he likes to do but he is so tired and sore from PT that he isn't as good for it as he could be. So, we have all agreed that once the schedule opens up for the next round of appts I am going to make the OT appt for the time slot before PT so that he is better for OT.
Then, we had to pick up the chemo. Now, all those of you who know me know that I HATE waiting! LOL I am just not an overly patient person but this has made me try harder to take things as they come. Today though, I got aggravated. The neuro-onc team was supposed to call the pharmacy (it's a kids pharmacy that they send all of their peds patients to all the time and they will compound the chemo drugs, unlike most pharmacies out there!) on Monday to have them make sure they had the Temodar that Mike needed in stock for today. I don't know whether they forgot to call or that the pharmacy didn't order it if they did call but either way, they didn't have the chemo meds there to compound today. AARRGGHH!! I hadn't known this so when I got out of the hospital with Mike at 12:30 my dad was able to pull up across the street (I know, we must play the lotto, a legal spot in the middle of Manhattan just waiting for us when we needed it!! LOL) and I ran in to pick up the meds. Now, if someone had called me about this or if someone had called MSKCC and let me know I would have been more ok with this but the fact that noone called anyone I was annoyed. They weren't sure what time their delivery was coming in and I wasn't about to keep Mike and Katie waiting in the car for an unknown amount of time. I was fully prepared to drive back into Manhattan tonight (and God bless Dad, because he was prepared to do it too so I didn't have to!) but then we remembered that my sis, E, works in the city!! LOL So, E to the rescue for her favorite nephew!! :) LOL E is going to pick up the chemo and bring it to Grandma's so we can start tonight!
So, everyone, keep those prayers coming!! Pray that the chemo is killing the tumors, pray that Mike continues to tolerate the chemo so well, pray that I have the strength (emotional/mental not physical) to do the exercises with him that he needs to do even when he is upset and crying, pray for our family that we continue to do what we need to do and make the right decisions for Mike and then again, because we can't get enough prayers for this, please pray that the chemo is working!!
Love to you all,
Wednesday, February 18, 2009
Hi Everyone!! :)
Posted by Chrissie at 2:05 PM
Monday, February 16, 2009
I hope that you all had a wonderful weekend. I had told myself that since both kids are home today I was going to not get on the blog and write anything. Nothing that I might have wanted to write couldn't wait until Wednesday after Mike's plethora of appointments. But it's 9 AM and I have already cooked 4 eggs, changed 6 DVDs, drawn 10 Sesame Street and Blues Clues characters on a dry erase board, refereed at least 3 fights and taken 2 Advil so here I am! LOL
I have to tell you, I have been thinking a lot about signs. About how there are little things to show you that everything is going to be ok. That there are things to let you know that the people you have loved and that are no longer with us are watching over us and taking care of us all the time. I believe there have been signs sent to me to let me know that all of my family members up in heaven are watching over Mike, helping me to make the right decisions for him and are guiding the Doctors to the right medications to get rid of these tumors. Like I said in another post, I am very cautiously optimistic about things. I have a fear that things aren't going the way I want them to and I am petrified about the MRI on March 9 showing us what we don't want to see but deep down I believe, and am hoping beyond hope, that everything is going to be ok.
Mike is doing ok. I wish I could say he is great but he is ok. And right now, that's good. He is cranky and irritable all too often. He gets frustrated entirely too quickly and he is still not eating as well as I would like him to. He is still not walking and is really not sleeping well at night at all. BUT, he still likes to play, he is still loving his DVDs and has a very active imagination. He loves to play on the computer and is talking up a storm. He sings songs, says the alphabet and counts to 20. He lights up every time Katie comes in the room and wants to be involved in everything that we do.
So, like I said before, today was shaping up to be one of those days. Right before I sat down here I was about to lose it... and it's only 9AM! I was aggravated at the way the morning was going. I was frustrated that I got very little sleep last night AGAIN. I was worried again about Mike's behavior, is there something really hurting him causing him to be so cranky? Is the tumor changing in a way that is unacceptable to me(notice the wording... I can't even bring myself to type it out in plain English) and causing him to be so irritable? So, I sat down here and signed into my G-mail account. I then signed into Blogger and saw that I had a comment to moderate.
I truly believe that comment was another sign. Not from an old friend or a family member or from someone I know in real life but from someone I have never met. I have never met her but I have been so touched by this person and her family. A sign in the form of a comment. It's right there, on my last post, go read it for yourself if you want. It's a comment from Jessica Kate, Tuesday's mom. She was responding to a comment I left on her blog and when she was leaving hers she noticed her verification word (you know, that word you have to type when you try to leave a comment) to leave a comment on my blog. Jessica Kate's verification word for that comment she left me was CURE. If that's not a sign from a very special little girl up in heaven, I don't know what is.
So, for all of you, please keep praying for Miss Tuesday and her family and for all of the children that have been taken away from us by this monster we call cancer and their families. Please keep praying for the rest of our family that we are making the right decisions and doing all that we can do to make sure Mikey-Mike lives a long, happy and healthy life!! And, of course, please keep praying and keep believing that Mikey-Mike is going to be ok.
Thank you all so much! I hope you all have a wonderful day... and that mine just gets better from here! LOL
Posted by Chrissie at 9:01 AM
Thursday, February 12, 2009
I have to tell you, I am finding out that more and more people are reading my blog and can't believe that there are over 300 people that have joined Mikey's Facebook group! I am so touched by the tremendous amount of support that we have received from everyone. Thank you all so much and for those that haven't joined yet, please go to the group and send a request to join! Once you are on there you will be able to get the 'Reader's Digest version' of everything that has happened up until now and where you can keep updated on what is coming up for Mike in the future. One of the things you will find is that on February 18th we are having a Virtual Prayer Day For Mikey-Mike!! Wednesday, Feb. 18th is the first day of Mike's 2nd round of chemo. We are praying that this chemo kills the tumor cells that are all over his spine and brain and that he continues to tolerate it as well as he has been tolerating it! Pray from your office, home or wherever you are, pray in your PJs, in your worksuits or in your workout gear!! Just please, join us in praying for Mike's full recovery and that this drug does it's job!
Now, onto Mikey-Mike! On Thursday morning I took Mike into MSKCC for his PT and an OT appointmenta. I am now fully aware that we need to schedule his OT appointment BEFORE his PT appointment. The poor little man was in so much pain from PT and was so wiped out that it broke my heart. All he wanted to do during the OT appointment was hang onto me and be held. I do have to say though, the therapists were phenomenal with him and were so patient and supportive!! That was a big help in all of that. The PT said that the VinCristine caused the foot drop that he has and that foot drop caused his ankles to be stiff which caused the pain when he was walking which caused him not to want to walk which caused the muscles to stiffen so much which causes the pain when anyone tries to get him to stand. So, all in all, I think it's going to be a long and painful journey for my little man to get walking again. He really liked bouncing on the exercise ball until M (the therapist) tilted the ball to move him to a standing position. I now have to go online to find an exercise ball so I can work with him at home too. I just feel horrible because he was in so much pain. I know it needs to be done because he needs to walk but I can't stand when he cries out the way he does it. I have exercises to do with him at home too. My mom had wanted me to show her how to do the leg moves but I don't want anyone else to have to do it because they hurt and it would be horrible if he associated anyone else with the pain. :(
So, we go back to MSKCC on Wed, 2/18. Mike has an appointment with the oncologists to have an exam and to get the Temodar (chemo) that we have to start at home that night. Then he has PT and OT again. On 2/24 we go back AGAIN to get blood work done, have a surgery follow-up, PT, OT AND Mike has to see the Ophthalmologist. That's going to be one very long day. 2/26 is just PT and OT. Looks like we are back to being at MSKCC 2 or 3 times a week! And, PLEASE don't forget to say some big time prayers on 2/18 that the chemo we are starting round 2 of is doing its job and on 3/9 for Mike's MRI!
I hope you and your families are all doing well! We continue to pray for all of you that visit us here to check in on Mike and our family. Please keep Mike in your prayers!!
Posted by Chrissie at 8:02 PM
Wednesday, February 11, 2009
I signed on today and saw that I had many comments to moderate! Thank you to all of you new readers! One of the comments was from Ron. (Thanks to Jennifer I learned how to hyperlink so just click on his name to go to his blog!! :)) Ron is very talented and sketched a picture of Mike that I wanted to share!! :) I absolutely love it!! :) Thank you so much Ron!! :)
We go into MSKCC tomorrow for Mike's first Occupational Therapy and Physical Therapy appointments since the surgery on 1/30. I know it is going to be a long road but hopefully he will be up and running again really soon!!
Oh, and Matt got a job with his company in Manhattan so he will be coming up to NYC! Katie is so thrilled that she will get to see Daddy more. He will be staying at his mom's upstate. It would be so crowded here and he will be working so much on the days that he is working that the kids wouldn't get to see him enough anyway. It will all work out for the best this way. He will be here on his days off and will be able to help on nights that I need him to be here too.
Thank you again for all the good thoughts and prayers! Please, please, please keep them coming!!
Posted by Chrissie at 3:14 PM
Monday, February 9, 2009
Yep, Mike had a good day at Sloan today! :)
His counts came back great! WBC: 7.2, HGB: 12.8, Platelets: 330 and ANC: 3.0!! Yep... that's all but the HGB in the normal range and the HGB level only misses the normal range by 0.2!! YAY!! He has been feeling good and has been acting good for the most part too so it makes me feel better to see him doing better. Don't get me wrong, he has his tough moments and he is still sleeping horribly overnight but for the most part, during the day, he's been pretty good.
And guess what?? He gained weight!! It's only 3 ounces but it's a gain! Hooray!! Looks like the eggs and ketchup, waffles, pancakes, cheerios diet is working!! LOL
They scheduled the next MRI too... March 9, 2009. So, mark your calendars everyone, March 9. March 9 is the day to send every good thought, feeling and prayer you have in you out there for Mikey-Mike!! :) I have to be honest, and please know I am being cautiously optimistic but I feel like this one's going to be good.
Well, after such a great morning he is one pooped little guy. I am going to put him in for a nap and get some stuff done around the house before I have to get Katie.
Oh, did I tell you about Katie? She is reading in Church for the Catholic School's week mass on Wednesday! She is so nervous. It's a long prayer of the faithful and it has big words like administrator and empower in it but she's doing it! I am so proud of her! I know she is going to do great!
Well, I am off to grab some lunch! I hope you are all doing well!! Please keep sending those prayers, we are still needing them!!
Posted by Chrissie at 12:35 PM
Sunday, February 8, 2009
So as I posted the other day, Saturday was a celebration of Tuesday's life. I took the kids for a walk this weekend and I thought of Tuesday and how happy she must be up in heaven looking down on all the kids. I can't imagine Jessica and the Whitt family's grief. There have been so many people touched by Tuesday's story and life that people all over the country were taking 'waggie' rides this weekend to celebrate an amazing little girl.
Now, those of you that have been following Mike's story know that he can't walk. He can hardly sit up on his own so I put Mike in the carriage and Katie rode her bike. Here are some pictures that I took of the kids on our 'waggie' walk for Tuesday.
Sending all our love and prayers to the Whitt family!
Posted by Chrissie at 12:37 PM
Thursday, February 5, 2009
**update: Thanks to Jennifer, I am going to try to hyperlink Mike's Facebook page!! :) Mike's Facebook Group
There's a Facebook group for everything... why not one for Mikey-Mike??!! :)
Here is the link... (I have no idea how to hide a link and make it an underlined word or phrase so please, if anyone here in Blogger-land knows, send me a comment on how I can do that!! LOL)
Join us there!! Show your support for a strong little man and his family! See some pictures, send a prayer, show some love.
Just a note... I realized that the group was open to the public and everyone and anyone could see everything! Since there are pictures of my kiddies on there I made it so that if you are not a member yet you must be approved to join. Don't let that stop you... join and show some love for the strongest 3 year old I know!!
Posted by Chrissie at 8:13 AM
I got this from Debi, a friend of Jessica's. She was so sweet in contacting me after reading my blog and I wanted you all to know that this is happening. I know I asked you to hug your kiddies a little tighter but now I'm going to ask you to do something else... Tuesday Whitt loved wagon rides. She called them "waggie rides". Saturday Feb. 7th Tuesday's family is having a celebration of her life. Since I don't live in Colorado but wanted to honor Tuesday, Jessica and their family I was so happy to see that we could have a virtual 'waggie ride'. So, on Saturday, if you are out and about in Rockaway, look for Katie, Mike and me taking a walk in honor of Tuesday! If you want to join us, call me... we would love to take a walk with friends!!
Here is the blog story from Debi (http://eminpursuit.blogspot.com/2009/02/tt-power-of-many-pulling-as-one.html)
On Saturday, February 7th at 11:00 a.m., the Whitt Family is holding a celebration in Parker, Colorado. They're having a wagon and bike parade to honor Tuesday with one of her favorite things to do - "wagie rides."
We all can't be there physically, but we can be there in spirit.
And on Saturday, have a little wagon ride yourself. No wagon - go for a bike ride. Too much rain - jump in a puddle. Too much snow - pull a sled. Heck, throw the pooches in the back of a pickup and take a slow drive.
Whatever you do - as one person, as a couple, as a family, as a group of friends - take a picture and post it. Then come back here or to Lee on Monday, February 9th, and add your link to Mr. Linky.
The goal is to create a virtual parade for Tuesday, to show her family and friends how her brief life touched so many. To offer support in their time of need. And to maybe bring a smile.
We hope we did not over step our bounds in this effort. It is heartfelt, and it is pure. We both felt the need to do something, anything to help these hurting hearts.
We hope this does in one small way.
Now grab that button and spread the word!
Posted by Chrissie at 8:05 AM
Wednesday, February 4, 2009
Ok, well we all know that chemo makes the hair fall out. I hadn't known exactly why it does this until Mike started chemo and Katie asked why it happens. I don't know why I didn't know or why I never asked, but it was just one of those things that is there. It just happens. So, when Katie asked, I got her the answer. It turns out that the chemotherapy drugs' main job is to kill fast growing cells. Some of the fastest growing cells in the body are the hair cells. So, it kills them.
I have posted pictures of Mike in many places, on my MySpace and Facebook pages and on here. I have shared albums of pictures online with family and friends. It is apparent to everyone that the chemo is killing Mike's hair cells. Sure, it has taken longer than we thought and I am grateful for that because it is gradually falling out and allowing me to take my time dealing with it.
Now, two of the things that bother me when people say them are, and please don't feel bad if you have said this to me before because you would have no idea that they bother me. I know that you were trying to make me feel ok about his hair and that you were trying to help and you said them out of love for me and Mike. And to be honest, I have said and thought them myself before. I had no idea that they would bother me so much hearing because they are logical. They make sense, they really do. But they bother me all the same. They are, 'He's a boy. It's ok, it would be worse if he was a girl' and 'Don't worry, it'll grow back'.
Ok, yes, he's a boy. But that doesn't make it ok. How could it? What makes a little boy's hair loss any less traumatic than a little girl's to their mom that is caring for them through cancer and chemo? It isn't ok that he is a boy and has only gotten one haircut in 3 years. It isn't ok that his amazingly long eyelashes are falling out or that when I kiss his head I kiss more of his scalp than hair. It isn't ok that when he touches his head and then puts his thumb in his mouth he has to fish hair out of his mouth off of his tongue and cries, 'Hair! All done hair!' while he is doing it. None of this is ok. And yes, God willing, it will grow back. But I will get back to that one in a minute.
I want you to know that if I could save every hair that has fallen and will fall out of his head I would. If I could turn back time and he still had to have these tumors I would have found them earlier. If I could take away his pain and sickness I would. But I can't do any of these. His hair falling out is a constant reminder to me that he is sick. Even when he is smiling and laughing and acting great, the hair loss is always there staring me in the face.
Ok, you are all right, it will grow back. God willing, he will have a full head of hair and he will be getting hair cuts constantly. Now, I would like this to be sooner rather than later but I'll take it whenever it comes. I pray more than once a day, more than 5 times a day actually, that the chemo is doing it's job and that one day he will be tumor free and off chemo. Because that, and only that, will mean that his hair will grow back. So when you say, it will grow back, please know that while I know in my heart of hearts that it will, today it is falling out. Today it is falling out because his tumors are still there and he is still on chemo. When I say, yes I know it will grow back, I say it as more of a prayer and a hope and a plea to God that he will be tumor free and growing back into that happy all the time little boy because I truly believe that we will fight this and beat it.
So, please pray for Mike and our family that his hair will grow back... that he will be tumor free and off of chemo and grow up to be a healthy man living a long happy life. Please pray for all of the kids who are losing their hair to chemo and their families that are caring for them that they all have the strength to get through their chemo and that they win their fight with cancer just like I know and pray that Mike will.
Posted by Chrissie at 7:17 AM
Tuesday, February 3, 2009
So there's this blog I follow. Well, there are a lot of blogs I follow but this one I really follow. See, when you are a cancer mom you have things in common with people that you wouldn't even think about if your child didn't have cancer. You rejoice when the scale stays the same and doesn't drop at each doctor visit. You are relieved when you can go a day without giving your child a stool softener. You get a thrill knowing that your little one is not nauseous for a day and hope you are so lucky tomorrow. You don't care what it is that your child eats as long as they get the calories they need to sustain them through chemo. You realize that today is the most important day of the week, no matter what day it is and what happens. You feel like you are going to cry over the slightest thing one day soon because you have held it in when all the big things happened that week. You have these unspoken fears and thoughts that you know noone but another cancer mom could understand you having.
So, like I said before, I found this blog. I don't even remember what blog I found it through but once I read it, I immediately started following it. (since I don't know how to add a link to my blog, here's the web address for it... http://half12.blogspot.com/)It is a mom blogging about her little girl named Tuesday who has neuroblastoma. Tuesday is a twin and she and her sister turned 2 in October. She is just the cutest little thing. Every picture I saw of her she was smiling in, no matter what was going on there was a smile. And once I found the blog I went back and read the whole thing... of course there was a box of tissues right next to the computer. I read it all, the ins and outs of the hospital, the scans, the chemo, the PICU stays... I would comment on their blog and Jessica (Tuesday's mom) sent me her phone number to talk to her about the Temodar that Mike is currently on. I hadn't been able to call her b/c of all the craziness with the hernia surgery but was hoping to do that this week. My heart broke into a hundred pieces when I sat down to update you all on Mike and I opened my blogging dashboard. I went right to Tuesday's blog and saw this...Any mom's worst nightmare. A cancer mom's worst fear. And there it was, staring me right in the face.
Tuesday Fiona Whitt
October 11, 2006 - January 30, 2009
It is amazing how one story from one family can touch you so much. I have been crying since I posted about Mike and read about Tuesday today. It is heart wrenching to know that there are so many other families that have pediatric cancer out there that worry like I do so often and so much. It is exhausting to think about the number of children that are diagnosed each day and the number of families that are living with and fighting pediatric cancers.
To Little Tuesday, May you rest in peace and be in no more pain. May you wear that beautiful smile every day and watch over your family and give them the strength that they need. To Jessica and all of Tuesday's family, my heart breaks for you and my prayers are with you.
Hug those kiddies of yours even tighter tonight. And please, when you pray for Mike, include Tuesday and her family in your prayers.
Posted by Chrissie at 8:59 PM
I am sorry it's been so long since I posted. Last week was full of Dr visits and craziness.
First, Katie and I had an AMAZING time on Tuesday night at The Little Mermaid on Broadway! It was an awesome show and she and I both loved it! The 2 1/2 hours flew by and I would see it over and over and over again! I was so thrilled that her first Broadway experience was so great. She was so funny... sat up in her chair, leaned forward and was all smiles all night! It was so great to get time out just her and I. We definitely don't get enough Mommy & Katie time so that is something I need to really make sure happens more often.
Next, onto Mike! Well, as you all know, we went in on Monday and they said that surgery was needed to relieve the hernias and hydroceles in his scrotum. (I am sure that as Mike gets older and looks back on this blog he is going to be soooo mad at me that I am talking about this!! LOL) So, I waited for the call... and waited... and waited... finally on Wed evening I didn't want to wait anymore so I called the surgery office. They were having a problem getting Mike added to the OR schedule so they told me to come in on Thursday and have Dr. K look at him again to reevaluate and see if there was extra urgency. You know, extra urgency, on top of the fact that there were hernias and that the chemo might possibly affect his blood counts sooner rather than later... I don't know how much more urgent you could get but what do I know, right? So, anyway, we went in on Thursday morning and waited 2 hours to be seen. That morning they had seen a patient that was on the schedule for Friday but was sick so they had to cancel her surgery and we were able to slide into her spot. So, the check turned into a pre-op appt. We got there at 6:45 on Friday morning. After waiting in the PDH for a while we were taken to the OR holding rooms and he was taken in to the OR around 9:45. I hate that walk to the OR with him. That whole handing him over to Drs that I know in my head will take good care of him but my heart just breaks every time I have to hand him over. This was surgery number 5 since September and it doesn't get any easier.
Anyway, after 2 hours (yes, it took an hour in each side) Mike got through surgery beautifully on Friday. Dr. K came in to speak to me and my Dad and said that there most certainly were hernias and hydroceles in both sides of the scrotum. My dad and I went into the recovery room and waited for Mike to wake up. His stats were great and I was glad I went in because I just wanted him to sleep it off himself. The thing I have learned is that he reacts to anesthesia so much better when you let him wake up on his own! So, we let him sleep... and sleep... and sleep!! He slept for at least an hour and 45 minutes after he was brought to the recovery room. Once he woke up he was wheeled into the PDH in the hospital bed... DVD player running right next to him of course! LOL He really did so well after this surgery. He took his pain meds like a champ that night and on Saturday and all looked well.
Until Sunday morning... When Mike woke up and I changed his diaper he was swollen... and I mean swollen. I was so nervous. Dr. K told me to look for redness and swelling as signs of a problem and here I was looking at swelling. At first I thought it was just me so I called my Mom to come down and make sure I wasn't seeing things. I wasn't... so I picked up the phone and called the surgery fellow who told me to come in. Off we went to Mike's first Urgent Care visit. We weren't there too long... only about 4 hours and we were sent home with instructions to call on Monday. So, I did... and then back we went to Sloan on Monday! Thankfully the consensus is that all is ok and it looks like it's just post-op fluid retention.
They ran his blood counts yesterday too. They came back good. This week is the week that we have to start watching them b/c of the new chemo. If he acts more lethargic or more irritable then I have to bring him back later this week, otherwise I can bring him in on Monday. I am praying and keeping my fingers crossed for a good week and just the one trip in... we have been in there at least 2 or 3 times a week since the beginning of December.
Anyway, this was yet another long one! I'm sorry for that... I'll try to update more often so that the posts aren't as long!
Thank you for the continued prayers and good wishes! Please keep them coming!!
Posted by Chrissie at 11:40 AM