Well, they say that when you or someone you love is going through long term health treatments, you start to take each day as it comes. You embrace every small milestone and look for the light at the end of the tunnel.
Today, I feel like we hit our first milestone. Mike received the last chemo treatment of the induction phase. Now, I can't say that the induction phase was without issues, or that he is feeling great through it all, but we did it. It was a very long 10 week period. I have never felt so worried, sick & crazed for so long. I know we couldn't have done it without our family and friends. Everyone has been so wonderful to us!
So, now I am going to back track. If you read the last post about Christmas Day, you will know that Mike had a tough time. He was having balance issues, he couldn't walk all that steadily, he wouldn't bend down to pick something up and he couldn't get up from sitting or kneeling on the floor. Christmas Day was the worst, Friday was a tiny bit better, Saturday was bad again and Sunday was a tiny bit better... by yesterday he was a little better and today he was better. He still won't bend down and get something and he still won't get up from sitting or kneeling on the floor but his walking is better. It is amazing that even at 3 he knows his limitations and how doing certain things make him feel uncomfortable so he won't do them.
So, of course, since he was better this morning it was chemo day today. The NP came into the playroom to observe Mike because, in our conversation on Friday morning, we had discussed and decided that it would be easier for her to see him walk in the playroom than in the office when they examine him. Honestly, I don't know how they examine him anyway b/c he is such a nightmare in the exam room. He clings to me with a grip that many adults don't have and is just so miserable that he won't get down to walk in there! So, anyway, after the NP & I talked about everything, she observed his walking and playing. She got the Dr and when he came in we discussed my concerns and what was going on and he was able to see Mike and watch him walk. Basically, the upshot is that they feel that everything going on, from the eye turning in to the droopy eyelids to the walking and off balance that is going on, is possibly related to the VinCristine chemo drug. He stated that the Dr in charge of Mike's case, Dr. D, really wanted to get the last dose of the VinCristine into him. I kind of assumed that he was going to say that so I was prepared for it. He did cover his bases though, and tell me that while this is all possibly related to the VinC it could also be related to tumor change. He said that if it is related to the VinC they could change the dose or change the meds all together. I asked if all of this would go away when he is done with the VinC though and the Dr said yes, most likely it will. So then I told him that at this point, if the MRI shows on 1/13 that these 2 meds he is on is getting rid of the tumor I will pick him up and carry him anywhere he wants to go and pick up anything he asks for on the floor so that he doesn't have to bend and get it for the next 13 months if it means that the tumor will be gone with this medication. I hate to see him uncomfortable and not as active as he should be but I want this tumor gone and if this is the medication to get rid of it, then we will all do what we have to do to get rid of it!
Now, onto the rest of today... His counts were ok, well, his HGB was bad but the rest of the counts were ok. His WBCs were at 3.8, ANCs were 1.8, Platelets were 286 and his HGB was 8.2... soooooo back to Sloan we go on Friday! If his HGB falls to 8.0 he will need a transfusion on Friday when we go. :( They are expecting it to fall so they did a type and cross today so that we don't have to wait for it on Friday. I called the blood bank (if anyone wants the number and info to go donate blood for Mike let me know... I will send you everything you need to go do it! !) and they said that we had a lot of people donate to Mike and there is blood that matches ready for him!! So a HUGE THANK YOU to all of you that went to donate already!
Well, he is laying on the couch asking me to sit with him so I am going to sign off now.
I hope you are all well. Thank you again for the prayers and good thoughts... please keep them coming!
Happy New Year! I hope you all have a very Happy & Healthy 2009!!
Love to you all,
Tuesday, December 30, 2008
Posted by Chrissie at 5:13 PM
Friday, December 26, 2008
Merry Christmas! Happy Holidays! I hope that your Christmas was wonderful!
Mike and Katie actually slept in until 7 AM!! I couldn't believe it! They both loved their gifts! Katie's big gift was a Nintendo DS with a couple of games and Mike's big gift was a tricycle and a V-tech laptop of his very own! lol Of course the biggest gift of all for both of them was Daddy under the tree but they very quickly went to their toys after big hugs for him!
Unfortunately, Mike was feeling really bad on Christmas morning, I felt horrible for him. Honestly, I thought I was going to have to bring him to urgent care at Sloan yesterday. :( I can't wait until this induction phase is over so they can change one of the drugs. The side effects from it really kicked in this week. They have been coming slowly for a few weeks now, the speech, tremors and stuff but this week they all hit at once and they all hit on Christmas morning. :(
He got sick on me under the tree as he was opening his gifts but if that was the only thing that happened I wouldn't have been as worried or upset. He seemed so weak sometimes that he needed to hold onto something to stand up when he was sitting down, kneeling or playing on the the floor and the tremors in both his hands are coming way more frequently now. He was very lethargic, cranky and clingy all morning. He would play for a few minutes then walk (he was looking like he was having a hard time balancing himself as well) over to me and just have me pick him up and curl up on me crying because he didn't feel good. I swear, this chemo better be getting rid of these tumors.
After he threw up and took a nap he seemed a little better though. He ate and played. I got some cute pictures of him and Katie playing on his new 'piano' and singing in to the microphone while my sister M was playing Guitar Hero! LOL It was adorable! He really got into it, dancing and shaking his bootie. I felt so much better that he was acting better last night. He did ask to go to bed at 7:45 though. The poor guy was so exhausted after playing for only a little over an hour. He had a halfway decent night, he was only up 3 times and none of those times was for too long. He is still asleep so I am going to play it by ear this morning whether or not to bring him in to Sloan for bloodwork. Either way we go back on Tuesday for chemo.
On a side note, my girlfriend E in Florida sent up some gifts for us. It was so sweet of her to do that! She and her family are wonderful and we miss them so much! But, I digress, I wanted to tell you about one of the gifts. It was a book. The book is called "Henry and the White Wolf". It's about Henry the Hedgehog who is very sick. When his mom finds him laying in the woods she asks the Wise Owl what to do. He directs her to the wolf's den to see the white wolf. They are very afraid b/c the wolf's den is a scary place but they go anyway to try to help Henry to get well. The white wolf commends Henry for coming to her den even though he was very scared. She told him that he must be a very brave hedgehog and gives him a shiny black stone to hold when he is afraid and that stone will remind him of how brave he was to come into her den. She says that being brave and strong will help him to get better. The white wolf makes a potion for Henry to drink. She warns him that he will probably feel sick and his quills and fur will probably fall out but drinking this potion was the only thing that could make him better. Henry drank the potion and though it was disgusting but he held the stone and kept drinking. They had to stay near the wolf's den instead of going home and the wolf brought this potion to the hedgehog every day. Henry held that stone every time he had to drink it. He felt yucky and his quills and fur did fall out but after a while the wolf was able to send Henry and his mom home. Henry was able to go back to school and play with his friends and feel all better. The white wolf came to him one day when he was at home and told him how brave he was and that she was watching him for a few days and how he was then all better. I cried right there under the tree reading it. (Those of you that know me, know how little it took me to cry before... not forget about it! I cry at the drop of a hat!) What a wonderful book to try to help kids understand about chemo and how brave and strong they are for going through all of this. The book came with a shiny black stone and that stone is now in my diaper bag and will come with us everywhere we go... especially to the wolf's den to see the white wolf that will make Mike all better.
Anyway, I am off to try to get another few minutes of sleep before the kiddies wake up. I am hoping and praying that Mike is feeling better today and that we can wait until Tuesday, when we are scheduled for chemo, to go to Sloan! We are heading to my dad's today for Christmas with them... it should be a lot of fun! :)
I hope that all is well with you and that you all had a wonderful, blessed Christmas! Please keep those prayers and good thoughts coming!
Love to you all,
Posted by Chrissie at 6:04 AM
Wednesday, December 24, 2008
On Tuesday while we were at Chemo Sloan had their annual Christmas party. Here is the clip from Fox News (Channel 5). My dad, Katie and my BFF Col made it on. (Katie is sitting on Col's lap in a green sweater w/ a mask on her face b/c she has/had a cold) It was really a nice party! Santa was there and so were the FAO Schwartz Toy Soldiers! :) The people that work there are amazing and really did such a great job. It was so wonderful to see all of the kids so happy! I wish Mike was there when the carolers were there but he was getting his port accessed. And of course, he fell asleep just after he sat on Santa's lap! I couldn't believe he actually sat there! Since you can't bring personal cameras in I am going to have to wait until next week to share the pictures of the kids that the photographers got but I will send them out when I get them!
Anyway, here is the story from the news....(Or you can just click the title of the blog and it will take you right to the FoxNY website to the story! :) )
Have a Very Merry Christmas!
Love to all,
Posted by Chrissie at 8:16 PM
Tuesday, December 23, 2008
Just a quick update from today before I put 2 tired children and 1 exhausted Mommy to bed!
Mike had week 9 of chemo today. The Drs. wanted to give him both meds again, which I expected them to do. We have discussed things and have decided that we should keep these last 2 weeks of the induction phase the way they were planned and then talk about possibly changing the dose of the one drug and/or it's schedule after his scans and spinal tap on 1/13/08. His blood levels were not too hot, WBCs were 3.8, HGB was 9.4, Platelets were good (knock on wood!) at 268 and the ANCs were down to 1.3. They said that I am cautious enough to not schedule an appt on Friday but if I think he is acting worse or doesn't feel good or look good to call them first thing in the AM and get him in for blood work. I am just hoping that he is feeling well enough to really enjoy Christmas on Thursday! He is really starting to get it and I would hate for him to not feel good for it.
One of my BFFs, C, met us at MSKCC today. She was all cute and preggo glowing. She is K's Godmother and she's been my BFF for close to 30 years so there's really not much we don't do together... I don't think we ever thought chemo day for my kid would be something we did but she is amazing and there for me every step of the way. Even though she doesn't think she knows what to say or do, she always manages to say something to make me feel a little better. Another very good friend of mine, J, met us there too! She was able to leave her little guy at home with her parents and took the train into Manhattan to spend some time with me and the kids. It was so nice of both of them to do that. There is so much to do at this time of year that I really appreciate that they both spent one of their few days off this week with us at MSKCC. My dad was great and took Katie for a walk and to hang out while I was talking to the girls. Katie loved her one-on-one Grandpa time and I was happy to catch up with 2 friends that I don't see often enough at all!! And when I got home I was talking to my other BFF, J (Mike's Godfather), and he was asking when he could come back to chemo day with us. Mike and I are so absolutely blessed by the support system we have.
On top of chemo day, it was the Christmas party at Sloan today! I hadn't known that when I switched chemo to Tuesday this week but I was glad I had switched it when I heard! It was great, the toy soldiers from FAO Schwartz were there to open the party and Santa himself came! I was so thrilled that Santa came b/c Mike has been neutropenic or borderline neutropenic since right after Thanksgiving so I hadn't been able to take him to meet Santa this year. Katie was so thrilled to get to tell the big guy that she wanted the Nintendo DS in person instead of in a letter! LOL Mike even got on his lap and talked to him! I was shocked! I expected him to scream but he was GREAT!! :) They got amazing gift bags too!! There was singing, laughing, eating, playing, presents, and just an unbelievable amout of joy for such a hard place to be. I swear, every time I walk into that place those kids amaze me. They are just so strong and so wonderful. They all deserve the best Christmas (or whatever holiday they celebrate) every year for many, many, many years to come.
Well, that's it for now. I am so exhausted after these past few days I can't even see straight. I am going to give Mike his anti-nausea meds and get him to bed, spend some one-on-one time with Katie for a little while and then head to bed myself. I hope that you are all doing well.
Thank you so much for your prayers and good thoughts! Please keep them coming!
Love to you all,
Posted by Chrissie at 7:10 PM
Monday, December 22, 2008
That's right, we had our first (and hopefully our last) emergency trip into Sloan this morning. Yesterday after Mike got up my mom noticed his eye turning. His left eye. The eye that started this whole mess. We watched it all day. It would turn in and go back to the midline. It would also come out past the midline which it didn't do when this all first started so I was hoping that was a good sign. As the day went on it would turn in more often so around 5:30 I called the night/weekend urgent care line. I was so worried about a shunt clog/malfunction that I knew if I waited until the morning I would be sick.
So, the operator got the pediatrician on call, we knew her from our inpatient stay, and the first thing she asked was, is he vomiting and does he have diarrhea. When I answered no to those questions she seemed to not be as concerned about a shunt issue. Once I ran down the issues we have been watching for 2 weeks though (the repeating the last consonants of some words, the coughing/sputtering when he sits up and drinks, the tremors in his hands) she seemed a little more concerned so she called the pediatric neuro-oncologist attending on call. She said that we had 2 options. Come into Urgent Care at that time and wait there until the morning and then get the scans done through there or we could stay home, keep him NPO (nothing by mouth) go into the Pediatric Day Hospital in the morning, get checked out and get the scans done that way. I opted for what would make Mike the most comfortable and we stayed home so he could sleep in his own bed and we left Rockaway at 6:45 this morning. My aunt is up from Florida so she was able to come with us. It really is a HUGE help having someone come with me every time we go in.
We met Dr. L at the PDH and he was very nice. He listened to everything, ran through all of my concerns and set up a plan. Mike would have a brain CT and then if it showed anything he would have an x-ray shunt series and a consult with neurosurgery. When he told me that the CT would show if there was increased swelling in the ventricles or progression of the disease I thought I was going to pass out. I was not ready for that but knew that if this was a shunt issue he needed to be checked and it needed to be fixed ASAP. Dr. L and the NPs worked things out with CT and anesthesia to get Mike on the schedule as soon as possible this morning, especially since he had been NPO since midnight. Mike was able to get on the schedule at 10:20 this morning. So off we went to get his port accessed, blood drawn and put on IV fluids and then we headed down to the CT floor.
The anesthesiologist came down to the CT floor with a nurse from pediatrics and we were ready to go at 10:30! I brought Mike into the CT room and held him while they put the propophol (sp?) into the tubes from his port. It took all of about 15 seconds for him to be passed out. The CT took only a few minutes and then we went back upstairs to the PDH to wait for Mike to wake up. He slept for almost 45 minutes so I was going nuts waiting for him to wake up so I would have something to do while I just waited for results. When he got up one of the nurses brought him out to me and I walked him back to the bed we had in the PDH and he slept on me for about another 1/2 hour. When he got up he was asking for his DVDs in true Mike fashion! LOL I ordered him eggs, Cheerios and ketchup for lunch since he hadn't eaten yet and we waited for results. Finally, after probably only about another 90 minutes but what felt like 90 days, Dr. L came into the room and told us that everything looked ok. He said that there was no more increased swelling of the ventricles and that the masses had not changed so that was a really good sign!! Unfortunately, the down side is that all of these issues may be related to one of the chemo drugs. I e-mailed the neuro-oncologist in charge of Mike's case when we got home to ask him a few questions. He agrees with me about possibly changing the dose but feels that with only 2 weeks left of the induction period we should stick with it for these 2 weeks then wait for the MRI & spinal tap results in January during the off weeks and discuss it then. I knew from the beginning that changing the dose of any meds would be a problem in the induction phase so I think I am ok with the last 2 weeks and then figuring it out from there. We will see what happens after we go in for chemo tomorrow.
Anyway, that's the story from today. I am so happy with the fact that nothing seems wrong with the shunt and that the masses haven't gotten bigger! I feel like we really may be on the right track with these meds! Please just keep hoping and praying that I am right!!
Thanks to all of you for your support and prayers! I will update after we get home from chemo tomorrow.
Love to you all!!
Posted by Chrissie at 4:48 PM
Thursday, December 18, 2008
Good morning everyone!
Well, I am going to post a non-Mike chemo blog! :) We had a very exciting few days here! We watched the first snow fall, Katie cheered in her first basketball game and we got our very own Elf!! :) I want to share the pictures with you from all of it but first I am going to share a couple of cute stories with you.
On Tuesday it snowed. Not a lot, just a light dusting but it was snow and it was coming down. At one point I think everyone was wondering where the snow came from b/c it looked like it was really coming down and we were all afraid it would just keep coming and stick! Mike was sleeping when it started so he didn't get to see those first few flakes. When he got up it had started to stick to the grass and cars. I went to take a picture out the front door as we walked downstairs and he peeked outside around me. He got all excited, laughed out loud and said, 'Wow! Christmas!'. He kept running to the window to see the 'nose' (how he said 'snow'! lol) It was absolutely adorable! :)
That night Katie cheered in her first basketball game for SFdS! She had a blast doing it! She looked adorable in her little uniform! They started by being up on the stage in the gym doing the typical K/1st grade cheers... Defense! Shoot the Hoop, Go St. F.... it was adorable! 30 5 and 6 year olds cheering for 11 year olds playing basketball. The girls thought they were amazing! :) Then they came off of the stage for half time and did a dance on the floor to Hannah Montana's "Rockin' Around The Christmas Tree". It was great! They really did do a good job and were so cute!
Then this morning we got a really big surprise! There was an Elf in our house!! Katie woke up, got dressed and went downstairs. Poking out of the books that we have had in a box was a brand new book... "The Elf on the Shelf"! We read the book and it told us that somewhere in the house an elf was hiding. He is our Christmas Elf that will come back every year to watch the kids. He hides in the house and every night he magically flies back to the North Pole to visit with his elf friends and Santa to report on how the kids are behaving. The kids can't touch him or his magic can disappear but they can talk to him and send their requests to Santa through him. The catch is that his magic only starts when you read the book and give him a name! So Katie thought and thought and came up with a name... Sam!! Sam is our Christmas elf that will come back to visit the kids year after year. :) Seeing how excited she was and how much she really believes that this elf will magically fly to the North Pole every night kind of gave me a twitch of Christmas Spirit that I have been hoping to get a little of. It really is all about the kids and I am so glad to have been able to start this tradition of Sam the elf with them.
Well, here are the pictures I told you about... the snow, one of Mike resting after a tough Wii game while it was snowing, Katie cheering and Sam the Elf in his first hiding spot!! :)
Thanks for reading! Don't forget to read the last couple of blogs I posted the past couple of days... our winter drive and chemo yesterday! :)I hope all is well with you! Thank you again for all of your good thoughts and prayers!
Love to you all!!
Posted by Chrissie at 7:55 AM
Wednesday, December 17, 2008
First, I want to thank everyone that has already, is going soon, has an appointment and is making an appointment to donate blood for Mike! I know it is early and we have a long way to go so we will be needing blood for a long time so please don't get frustrated if your appointments start getting staggered out! We are so grateful to all of you for all of your prayers and for all of the support you are showing us. It means so much to me!
Now, onto week 8 of chemo. We got to Sloan and Mike went in for his 'finnadicks' (finger stick for all those that don't speak Mike-ese! lol) to check his blood levels. When we went in to see the NP & doctor they told us that his ANCs and WBCs went down again. His platelets are still strong at 285, his HGB is 10.6, his WBCs are 4.3 and his ANCs are 1.2. He did well during treatment. Don't get me wrong, he HATES getting accessed but he does really well after that part is done! And the Zofran helps him get some sleep while he is receiving the treatment so that's a plus. While he was getting the meds I was talking to Dr. G and he said that with his ANCs so low that we should come back on Friday to check his levels in case we have to start with the daily injections again for the weekend. I am disappointed and worried but at this point, I know that this is something that we can fix so it isn't the end of the world. I just hate putting him through all of these needles and meds. :(
So, we head back on Friday. He is ok right now... cranky and uncomfortable but ok. He's actually playing games on the computer right now! lol I am off to play with him and Katie.
I hope that you are all doing well. Please continue to keep us in your prayers! I will update again tomorrow or Friday!
Love to you all!
Posted by Chrissie at 5:50 PM
Tuesday, December 16, 2008
Hi everyone!! :)
Well, Matt came up over the weekend and since Mike was feeling well enough, for the most part, we drove upstate to my in-laws. It was a nice weekend and the kids were absolutely thrilled to see Matt. I would love to share more about the weekend with you but for now I am only going to share about our drive upstate. It was a drive that I don't think I am going to forget for a long time because it really made me believe, even more than I did before, that everything is going to be ok. Here is the story of our drive...
I am going to start by saying, I never carry my camera up front in the car w/ me but since Matt was driving (that doesn't happen too often in the minivan!) I just threw it up there and I was so glad I did. If any of you live in New York you know that traffic can be bad on the NYS Thruway but it was downright horrendous, even for a Saturday morning. So we had to take a detour. It was a big detour. We had to get off of the Thruway and backtrack a few exits down the Sprain Brook. After we changed gears and got our bearings I knew that we had to drive up the mountains. I hate going that way, it's winding and steep and I am tend to get a little car sick when we have to drive that way so I was not thrilled by this!! It was a normal drive for a little while until all of a sudden we turned up 9W and the view was just stunning. There was an ice storm on Thursday night and everything was still covered and coated with ice. I had never seen anything like it. It was absolutely stunning. On top of being so beautiful, there was something so peaceful about it. Katie was so excited by it but I couldn't believe it, it was amazing, I could look at it for days. In fact, one of my pictures is now my computer's background so I can see it every time I look at the computer.
I believe there was a reason we were sent that way. There was a reason Matt was driving, that there was unbearable traffic on the route that we normally take, and that I had put my camera in the front with me. I think I was supposed to see how beautiful things can be despite everything going on in our lives. Because, let's face it... when your 3 year old has an unidentifiable brain & spine tumor you tend to have a few disagreements with God. I know that people will tell me things like He doesn't let you go through things alone, He is always there with you, He is watching over us and He never gives you more than you can handle but I have to be honest... He is really getting ready to cross that line of what I can handle and what I can't. I pray every day like crazy. I pray for Mike, Katie, me, our family and friends who have been so wonderful to us, those that we know that are going through their own tumor and cancer battles and for those that we don't know that are battling too... and there are about 100 more intentions and people that I pray for on a daily basis. I have really been struggling with all of this because watching my 3 year old get stuck with 2 needles a week and getting pumped full of chemo, getting sick from the medication that is supposed to make him better, feeling so tired after just a little while of playing, losing his hair, having his sister worry about him and wonder every week if we will be home from the hospital or if we will have to stay with no notice again. I know I have said it before but I can't say it enough, our family and friends have been amazing. I have so much support that it is awesome, but no matter how many people are around, at the end of the day it's me that Mike wants to hold him and me that Katie asks the questions that wake her up at 3 AM to answer. It's me that holds him for every fingerstick and port access and just sits with him rubbing his back and holding him when he feels miserable. So, now I know that I was sent on that drive this weekend to remind me that things will get better, that there is calmness and beauty to come. This is our traffic jam, our unexpected, horrendous, out of the blue Saturday morning traffic jam and we may have to step back and find our way but the outcome will be wonderful.
I just wanted to share that with all of you. Now, since I was able to get some pictures I want to share them with all of you.
That's all for now... I am off to bring Katie to cheer at a basketball game. I hope that you are all well. Please keep those prayers coming, they are appreciated more than you know!
Posted by Chrissie at 3:46 PM
Thursday, December 11, 2008
I want to thank all of those that have responded so generously about giving blood in Mike's name. I appreciate you all more than you will ever know!
So, yesterday Mike received his 7th chemo treatment. His numbers were holding strong yesterday!! :) His WBC was 11.7, HGB 11.3, Platelets 458 (!) and ANCs 5.9!! :) YAY Mike!! :) It seems that the transfusion and the 5 days of Neupogen really did what they were supposed to do. He did really well during treatment yesterday. We had a new nurse and she was wonderful. So far our nurses have been Mary, Carlene & Cassie. Of course, Maureen and Connie aren't our nurses but we like to call them our own too!! LOL Anyway, Mike did really well during his appointment and during treatment. The Dr was happy with his progress and how he came back from the neutropenia. I do have some concerns about things going on w/ Mike and I addressed them w/ the Doctor. The Dr. just wants me to keep an eye on him and keep a journal of what is going on and how often things are happening.
On top of those concerns, Mike got sick in the middle of the night. He woke up around 3:15 whining and cranky. I went over to rub his back and to see what was going on. He calmed down as I was rubbing his back and then all of a sudden he just got sick. :( It happened 3 times and he was so upset. I felt horrible for him. He stayed up laying in my bed just uncomfortable and upset. He finally fell back to sleep around 6 or so. He isn't doing so hot today either. I gave him the anti-nausea meds and they seemed to help for a little while and you could really tell when the meds were wearing off. He was miserable. :( I hate that he feels so sick.
Since I had sent Katie right to my mom's room as soon as Mike started getting sick my mom came in when Mike and I were just falling back to sleep and got what Katie needed to wear to school today and got her up and dressed so I could get some more sleep. This is why I know I couldn't do this anywhere else. To know that Katie is taken care of while I am taking care of Mike when he is sick is priceless.
Anyway, on to Katie's Christmas show. I can't post most of the pictures b/c they have other kids in them but I will show you the ones of just her. She was so excited yesterday to be doing the show. I think it was even more exciting b/c she had so many people come to see her. That's what I love about my family and being so close again! My mom works in her school so she is always there! My sister watched Mike at home and will come to the show tonight and my other sister came with us last night after work. My dad and stepmother drove to us from NJ and my mother-in-law and sister-in-law stayed here instead of driving back upstate right after chemo to see the show. And, as an added bonus, my aunt was up from Florida to take care of my great aunt after she fell and was still here last night so she came to the show too!! Katie was so thrilled that everyone was there and it was so great to see her so happy and excited! Here are a few pictures of her from yesterday :)
Katie & Mike playing after Katie got home from school where she had her dress rehearsal for the show :)
Katie in her dress for Wednesday night's show!! :)
The show's title... Children of the World Rejoice!
Katie standing in front of the Advent Candles that her class made :)
Well, that's it for now... Mike is napping so I am going to finish the laundry that needs to be done from last night.
I hope you are all well! Please keep those prayers and good thoughts coming!!
Love to all,
Posted by Chrissie at 9:33 AM
Tuesday, December 9, 2008
**This is an e-mail that I sent out to just about everyone on my e-mail contact list. There is a flier that I have with all of the information on how to donate blood for Mike but I am not posting it on here for privacy reasons, so if you would like the information please send me your e-mail address. My e-mail address is: email@example.com. Thank you so much!! Please keep those prayers coming!!
First, I would like to thank you all for your good thoughts, prayers and support during the past few months. The support that we have received from family and friends has made a very hard time a little easier. We ask that you please keep those prayers and good thoughts coming for Mike and our family.
I am e-mailing you today because, while Mike is doing well, he hit a small bump in the road last week and needed a blood transfusion. This could end up being a common occurrence for Mike during his treatment, as it is for many patients receiving chemotherapy. Because of this possibility, our family has teamed up with the Memorial Sloan Kettering Cancer Center (MSKCC) and started a blood drive in Mike's name. Even if you are not a match for Mike, the blood that you donate will go to help someone else at MSKCC that needs it during their treatment.
The information for donating blood is attached to this e-mail. Included in this information is the MSKCC website that details the donation requirements and the contact information at MSKCC that you would need to make an appointment to donate blood for Mike. If you can not get to MSKCC or can not donate blood for any reason, we completely understand, we just ask for your continued prayers for Mike. Please feel free to forward this e-mail on to anyone in the area that you know that might be able to donate for Mike!!
Thank you again for all of your thoughts, prayers and support. I hope you and your families are enjoying the holiday season!
Chrissie, Matt, Katie, Mike & our entire extended family!
Posted by Chrissie at 9:09 AM
Monday, December 8, 2008
So Mike now officially knows some Sloan terminology... we walked into the IV room and Mike says, 'fingerstick'. Of course, coming from the mouth of a 3 year old with a speech delay is sounds like 'finadiks' but I knew what he said... and so did Caitlin, the receptionist in the IV room. It was actually quite pathetic because he said it through tears while he was holding his hand up ready for them to stick him.
Katie came with us today since she was off from school for the Immaculate Conception. She was so excited to come... she loves the playroom and the fact that Mike gets so happy when he realizes she is coming just makes her feel like a million dollars.
Anyway, there we were waiting... and waiting... and waiting again. Katie was hungry so my Dad took her to the cafeteria. They were gone about 15 minutes and Mike and I were called into exam room 4. Dr. Lyden was there with Mary, our favorite NP. Mary took one look and said his numbers look good!! :) His WBC is 11.7, HGB is 11.5, Platelets are 358, and ANCs are up to 7.5!! HOORAY!! The transfusion and 5 days of Neupogen injections did just what they were supposed to do! No transfusion again today!! They checked him briefly... he sounds a little wet to me, like he is starting to get a head cold and they agreed, he sounds wet in his head area but it isn't in his chest so that's a good thing. His temp was great, his ears look good and his blood pressure was good too :)
So, we are home now. He's napping and Katie and I are getting ready to play Candy Land. :) We go back on Wednesday for week 7 of chemo. Both drugs this week so it's going to be another long day at MSKCC.
We hope you are all doing well. Thank you so much for the good thoughts and prayers.
Love you all,
Posted by Chrissie at 1:45 PM
Saturday, December 6, 2008
Well, here we are... just about 24 hours after getting home from Mike's first transfusion. Matt is here, Christmas decorations are going up, the kids are ok... I mean, Mike is still cranky and I can tell he isn't feeling right but for everything he has gone through, especially this past week, he's ok... so I should be ok. I really should be ok, right? But, I'm not. I'm tired... I don't mean just I need to get a nap tired... I mean really freaking tired. I am tired and drained in every way that a person can be tired...emotionally, mentally & physically tired.
I was driving in Brooklyn today and saw a billboard for St. Jude's Research Hospital. It showed a little girl and said, "Ellie Vs. Brain Tumor. Let's help Ellie win." and said that Mike is one of those kids. That's a harsh reality to deal with. Mike, my 3 year old, has a brain tumor. Actually, if I want to get picky and get into semantics, Mike has an 'unidentifiable central nervous system tumor' because it's in the brain, spine and cerebro-spinal fluid and they can't tell where it started. Still, for some reason they call CNS tumors, brain tumors so it's all just a play on words I guess. But, that could be Mike on that billboard. Granted, he still has hair... it's thinning but it's still there but that could be him, on a billboard for the world to know he is fighting a brain tumor.
All around me people are Christmas shopping, listening to Christmas music, watching Christmas movies... and I am just not feeling it. My sister, E, says it's a bad day when the person who decorates her house like an elf came in and threw up Christmas stuff in it doesn't feel like she can get into the Christmas spirit but I can't. Don't get me wrong, I am doing what I should be doing for the kids... I am hanging the stockings, buying and wrapping the gifts, smiling, playing the Christmas movies and music... but I'm just not feeling it... at all.
I am still crying in the shower and worried all the time. There isn't a day that don't I worry that I am not doing everything I can to get Mike healthy and to make Katie feel like very little has changed. I am constantly feeling Mike's forehead to make sure he doesn't have a fever, watching him walk, scrutinizing every move that he makes to make sure he is doing things just as he was pre-tumor nightmare. I am constantly trying to make things up to Katie... I let her stay up an extra 15 minutes at night so she and I can just hang out together, I make a bigger deal out of every good test she brings home and I give her a bigger hug every time she walks in the door. I try not to put Mike in a bubble, I try not to treat them any differently but this changes you as a Mom. You always knew your kids were special and important and delicate and the best kids that ever walked the Earth, but this changes absolutely everything and every moment with them gets sweeter and that much more special.
Yesterday as we were leaving the hospital my sister E was playing with Mike in the playroom and my Dad was getting the car. I was waiting and watching Mike play. Behind me, one of our favorite nurses, Connie, was hugging a kid, she must have been around 10, and her parents. From the way they were talking I knew she had been a patient there for a long time but she had a full head of hair so I also knew she is in remission. They were back at Sloan for another set of follow-up scans because they were saying that they had to catch a flight back home since they were done for this trip. And as they were leaving Connie hugged the mom and said, 'Now take your healthy kid and get out of here'... and I just got tears in my eyes. Every mom that walks in that hospital hopes and prays to get kicked out of there like that. I realized just how much I want to hear that and how long a road we have to go until I do hear it. And I will hear it. I know I will hear it. I won't just hear it once either... I'm going to hear it again and again and again after every scan he has. I know Mike will be the healthy kid that gets kicked out. I know it because I will not accept hearing anything else. And along with Mike, I hope and pray that the other moms we know hear it as well. That the kids we know and have met at MSKCC, especially MK and CM, are sent out of there with clear scans year after year after year.
On that note, I am going to go hang out with Matt, Katie & Mike. I hope that you are all well. Please keep us in your prayers and the next post I make I will give you all the info on donating blood.
Thanks and Love to you all,
Posted by Chrissie at 4:54 PM
Yesterday was a long day... and when I say long I mean looooong... one of those days where you swear someone stops everything and everyone but you and your 24 hour day becomes at least 2 days long.
We had to be at Sloan at 8:30 so we left Rockaway at 7. For the entire almost 48 hours from our chemo treatment to the time I had to get to Sloan on Friday I was praying and hoping that Mike's levels were going up with the Neupogen so that he didn't need a transfusion. We got there and had to do a finger stick. He hates that. I don't know that it's the actual finger stick that he hates or what but I think it's more the being held down part that he hates. Whatever part it is, the finger stick is not fun. The good part is that Sloan gets the blood work back in about 15/20 minutes so there is really no long period of uncertainty. Unfortunately, 15 or 20 minutes was all it took to be called back to the Dr and be told that his numbers dropped again, even on the Neupogen and he would be needing the transfusion. Yesterday his counts were (if you need a reference to normal levels the chart is on the right of this page)- WBC 2.9, HGB 7.5, platelets 280 (again, the only good one!), ABS Neut 0.5. So to say his numbers were crappy is an understatement. :(
I always knew a transfusion was a serious thing but I don't think I ever realized how serious the reactions could be. They gave him Tylenol (by mouth since he can't get a suppository) and an antihistamine since the blood products can cause a fever or an allergic reaction. I had never known that you could have an allergic reaction to a transfusion.
It took over 2 1/2 hours for the blood to come up from the blood bank! It was insanity! Mike was so tired by then and they had to wait until right before they hung the blood to get a blood pressure on him so they could use that as a baseline for during and after the transfusion. So, we kept him up because he hates his blood pressure being taken. I swear he silently gives the nurses the finger when they walk in with that cuff and tell him, 'It's ok, it's just a hug'. LOL
So, anyway, they finally hung the blood at 12:24... I think he was asleep by 12:45. I was able to talk to the nurses and Drs and they all feel that between the transfusion and the Neupogen his levels should come back by Monday.
Mike woke up around 2:45 and was done with the transfusion around 3:30. We were able to pack up and head home after that! :) Of course, he wanted to play in the playroom before we left so Dad got the car and met us downstairs so Mike could play for a few minutes before we left. :)
We got home and he was asking for dinner so I fed him... then I went upstairs to get changed. When I got back downstairs around 6 or 6:30 my phone rang and it was Matt. He immediately asked for Katie. All of a sudden she got this HUGE grin on her face... and got up and ran to the window. She started laughing and yelling "Daddy's here, Daddy's here!!" And sure enough, he was standing outside. It seems that he was so upset with Mike getting the transfusion and being neutropenic that he wanted to come up so he made last minute plans (and when I say last minute, I mean Friday morning he made the reservations) with free flights that were offered to him on Jet Blue through someone's Jet Blue card (We can't thank you enough!!) so he is here for the weekend. He is coming up next weekend too but next weekend we are going to see his family and spend the weekend upstate so this weekend is just for relaxing and making sure Mike is ok.
Next week I am going to post all of the information about donating blood for and in Mike's name at Sloan. I have to write my e-mail now and I will post it here after I send it out. Donating blood is such a wonderful thing to do... there are so many patients at Sloan who need it, and many of them are children. But I will save my blood donating campaign for it's own blog. :)
Well, that's all for now... I will update over the weekend to let you all know how Mike is doing and definitely on Monday after we get home from Sloan. Hopefully I will be telling you all that his numbers went up and that he didn't need a transfusion!! For now, we are all still praying and hoping that he feels good and that the chemo is working!
Please continue to keep Mike and our family in your prayers!
Love to you all,
Posted by Chrissie at 9:49 AM
Wednesday, December 3, 2008
I am going to make this short because I am exhausted and need to take care of Mike. We had week 6 of chemo today. First they drew blood when they accessed the port and we waited... and waited and were finally called in to see the Dr and NP. Well, the NP we love, Mary, was in the room and started by telling us (my BFF J and me) that if this were a week where he was supposed to get the carboplatin he wouldn't be getting his chemo this week b/c his numbers were so bad. (I added a list on the right side of the page of the normal ranges of lab levels so you can reference them whenever you read) His platelets were great at 258. But that was the only one that was good...his white blood count is 3.0, his ABS Neut is 0.3 and his HGB is 8.1. :( So... he is officially neurtropenic. They had to place an inflaport (I think that's what it was called) in the back of his left arm so that I (or in this case, J's aunt who is a nurse b/c Mommy is to chicken to do it) can inject a drug called Neupogen to help bring his counts up. We have to go back on Friday to get his bloods drawn again and since his HGB is so low if it gets to 8.0 they will have to do a transfusion. :( Also, I have to take his temperature 4 times a day and if it gets to 100.4 I have to call them and if it gets to 101 I have to bring him right in to Sloan. If he should wake up in the middle of the night with a high fever I have to bring him right to an ER. A lot of scary instructions but we will get through it and I am hoping and praying the Neupogen helps sooner rather than later!!
They did give him the Vincristine today though since that chemo drug isn't supposed to lower the levels. So, at least we are staying on schedule.
They also told me that they are going to refer him to the Make A Wish Foundation. I had always thought that the only kids who were referred to that were terminal kids but now any child that has a chronic health condition can be referred. We shall see what happens with that.
Well, that's all for now... a lot to take in and a lot to deal with. He was amazing again today and I am so glad J was able to come with us. It was so great to have him there.
I will try to update tomorrow on how Mike is doing! Please continue to keep Mike and our family in your prayers!
Love to you all,
Posted by Chrissie at 3:27 PM
Tuesday, December 2, 2008
While the kids are laying in bed I thought I would take this time to update you all on the appointment today instead of adding it to tomorrow's chemo update and making it, yet another, loooong blog! :)
I have to start out by saying I LOVE LOVE LOVE our new pediatrician. He is wonderful! Since I love him so much I absolutely trusted the first doctor that he referred us to for Mike's GI consult. And I am soooo glad I did. She was great! First, any doctor that comes in early so that one patient who is on chemo doesn't have to sit in a waiting room full of sick children gets a BIG plus in the pro column. Second, any doctor who spends 1 Hour 15 minutes with a patient gets another BIG plus in the pro column! She was great! She was so thorough and so patient with Mike. (He can be a real challenge for the medical professionals that have to check him out.)
So, here's the upshot of the visit. First, his eating habits suck. They always have and now that he is on chemo I am trying my hardest to get him to eat more. She said that as long as he is eating let him eat what he will. It would be great to have more of a balanced diet going on but I have to take what I can get right now. She gave us a supplement to try adding to his rice milk. I just tried it tonight and he didn't like it too much so I'm hoping the more I expose him to it the more likely he will be to try it. Next, we can't do any allergy testing on Mike right now b/c the chemo will have altered the blood work and any reactions he would have to any substance. So allergy testing is postponned for at least 14 months. The 3rd thing is that she wanted blood work done. Now, most of you don't know Mike and the medical profession. I was being kind before when I said he is a challenge. As his mom it is heart breaking to watch him and have to be the one to hold him and try to keep him calm and still. He HATES doctors and nurses and pretty much the medical profession as a whole. He screams, yells, kicks, cries, flails around, waves his arms and tosses and turns as much as he can to get them to not touch him. Sooo... with that being said, she wasn't too thrilled with the idea of drawing blood herself or one of her nurses drawing blood. I called Sloan because our appt is tomorrow anyway and they said that they would add her labs to his orders and draw the blood from him when they access the port tomorrow. That saved Mike (and me... and the medical staff in her office!) a HUGE amount of heartache and stress today! Tomorrow it won't add any more time or pain or aggravation to his appt, just add a few more vials of blood taken from the port when they access him. Lastly, she wants me to talk to the neuro-oncology team about vitamins. Now, I had been giving him multi-vitamins when we were in Florida because his diet was so bad but when I got to Sloan they said don't give him anymore. The GI dr. asked why and I was truthful when I told her that I just don't know. Everything had happened so fast I just kind of took what they said about the multi-vitamin and didn't question it(probably the only thing I didn't question!! lol). So, that goes on my list of questions for tomorrow!!
All in all, it was a good visit. She was very informative and seems very on the ball about things. She was great with Mike and listened to everything I had to say. We go back to see her on 1/6 but she wants me to call her next week to let her know how the supplements are going.
Hopefully we will have answers to the multi-vitamin question and blood results tomorrow so I will update on those in the Chemo Week 6 blog.
Hope you are all well. Please keep those good thoughts and prayers coming!!
Love to you all,
Posted by Chrissie at 8:23 PM
Monday, December 1, 2008
Hi everyone!! :)
Well, here it is... Mike's 3rd birthday! I can't believe he is 3 already! I feel like it was just yesterday that I was being admitted to the hospital... and here he is, walking and talking and bossing us all around! He has been through so much in such a short time, and he has such a long road ahead of him. He is such an amazing little guy. I hope and pray for 100 more happy birthdays for him. I think if I go on anymore though I am going to cry and go on for days so I am going to leave it at that.
We had his family birthday party on Saturday. I was so thrilled he was feeling great that day! :) He had so much fun, he played and ran around and was just loving all of the attention! :) My sister E brough over Thomas the Train balloons and we had Thomas stuff all over the house! He even had on a Thomas shirt. :) And he LOVED all of the presents that he got... and I think he got enough presents to fill a Toys R Us stock room!! LOL I think everyone had a great time! It was so nice to have the whole family, both sides of mine and my in-laws here to celebrate Mike's birthday! I will post pictures at the end of the blog :)
Today, I brought Katie to the Dr. She has the start of pneumonia. She has had a cough since Friday and this morning she sounded horrible! So, off we went. He put her on meds and said that she can go to school tomorrow as long as she doesn't have a fever tonight.
Mike has an appt w/ a pediatric gastro dr tomorrow. He has to be there at 12:45 so I will update on that when we get home. Please wish us luck with that appt! I am hoping to find out that we can start to try him on lactose &/or soy even though he is on chemo!! It would be so great to be able to try to expand his diet... he needs to be eating more than he is!
Chemo day is back to Wed this week. My best friend J is coming with us this week. :) Please pray and cross your fingers that Mike's counts are up this week!!
Here are the pictures from Mike's birthday party this weekend :)We had ordered the cake from a bakery in Brooklyn but since they don't decorate the cakes my Mom made the train tracks for the cake topper set we got!! :) She did an amazing job! I had been able to find cake mix and icing that were soy and lactose free so I made Mike cupcakes that he could eat too!! :) There is also a picture of him playing with his new Thomas the Train table & train set! :)
Posted by Chrissie at 1:31 PM
Thursday, November 27, 2008
"This is the e-mail I sent out to family & friends. I wanted to share it with those whose e-mail addresses that I don't have... thank you so much for reading my blog and for keeping Mike & our family in your prayers. Happy Thanksgiving!"
For times like this...
For days like this...
For smiles like this...
For laughs like this...
And all the moments in between...
We are truly grateful!
We hope you and your families have a wonderful, blessed & Happy Thanksgiving!! :)
All our love,
Chrissie, Matt, Katie & Mike
Posted by Chrissie at 7:37 AM
Wednesday, November 26, 2008
I am so sorry I didn't update earlier. I was taking care of Mike all night and all morning today and then when he was finally feeling better I was able to go run some errands and pick Katie up from school.
He is napping now so I can finally sit down and let you all know how things are going. He did really well yesterday. I think the people at Sloan forgot to take their speedy pills yesterday because we were in the PDH (Pediatric Day Hospital) for 4 (yes, FOUR hours) for a push of meds into his mediport that took about 10 seconds! It was frustrating for the adults (my dad came in with us :) ) but Mike was so great. He played and ran around and was just so good. He HATES having the port accessed and he hates when the nurses and Drs come near him but once they finish doing what they have to do, he is great! LOL
So, after they accessed his port we waited for the Dr/NP visit. It went ok... his levels went down again. His platelets are 126 (platelet transfusion level is 100, normal range is 160-400), his WBCs are 4.6 (Normal is 4-11), his HGB is 9.1 (transfusion level is 8, normal range is 13-17) and his ABS Neut is 1.7 (infection fighting antibodies...low end of normal range is 1.5 and they consider them Neutropenic (sp??) when it gets closer to 1.0). So it seems like he is hovering right at the cusp of low end of normal for some and below normal for others. :( The protocol that he is on calls for the 10 week induction phase in which weeks 5 & 6 are just the one drug, the Vincristine. Hopefully with this being week 5 that will help his levels to come back a little since it seems like the Carboplatin is what makes the levels drop so low. So, keep your fingers crossed that those levels go up for the next 2 weeks so that we don't have to worry about transfusions!!
After chemo Mike had a ophthalmologist appointment. I was worried about this one. Not only because I hate eye doctors and because Mike hates any doctor but because I was so worried about what the Dr was going to say. I know that I see a HUGE improvement in his left eye movement so I was hoping that I was not just seeing things. Well... the ophthalmologist agreed with me! He said he sees a really big improvement from just the month ago and that he feels pretty sure that there was no permanent damage to the 6th nerve!! :) HOORAY!!
Now, onto Thanksgiving. Hug every child you know. And when you are done hugging them...hug them once for me. Thank God that they are here, and healthy and that you are lucky enough to love them and know them. I know that I have been squeezing my kiddies a little tighter and a lot more often (if that's possible!) than before. I am so thankful for them. They are truly the lights of my life and I wouldn't trade either of them for anything or anyone in the world. So... this Thanksgiving, first and foremost, I am thankful for my kids. They have taught me so much and I love them more than I could ever express. Next my family...they have been so amazing that I can't even put into words how much they mean to me and how much I appreciate all that they do for and with me and the kids. My friends... I don't think anyone has a more supportive group of friends than I do. They make me laugh when I need it, they let me cry when I need to and they are just always there for me. I don't think any Thanksgiving has meant more to me than this one that we will celebrate tomorrow.
And last, but certainly not least... and yes, it will get it's own post... next Monday, December 1st is Mike's 3rd birthday!! I can't believe he is going to be 3 already! Where did the time go? I can't believe how fast it has gone by so far. And I can't believe how much he has gone through in such a short time. I know, and I pray, that all will be ok and he will have 100 more birthdays!! But... more on that in the Mike's 3rd Birthday post over the weekend!! :)
Well, that's it for now... it is time to wake Mike from his nap so that he sleeps tonight. I hope you all have a Wonderful, Blessed & Happy Thanksgiving!!
Posted by Chrissie at 3:22 PM
Thursday, November 20, 2008
***Update again... Mike's c-diff came back negative!! :) What a relief... it wouldn't have been serious but it would have been a pain again! I hated waking him in the middle of the night and he was so freaked with the gloves... YAY negative c-diff results!! LOL
**Update -- Mike's c-diff results are not back yet! :( ARGH!! Hopefully we'll get the results tomorrow!!
Well, week 4 of chemo is done... only 56 more weeks to go... we hope! We got to Sloan yesterday after a rough morning at home.
Mike hadn't really slept well at all Tuesday night, he was up 8 or 9 times so getting him up at 6:15 was a bit of a challenge since he seemed to be in the deepest sleep he had been in all night! And don't even get me started on waking Katie! She is a nightmare to wake up! That girl loves her sleep and when you have to wake her she is as cranky as can be. So, now it's 6:30 and I have 2 whining, cranky children on my hands and I am getting them both ready for the day ahead.
Thankfully both my Dad and my sister, E, were coming to Sloan with Mike & me yesterday. They were both here to talk to Katie as she was crying that she couldn't come with us and to tell her that E would be here when she got home from school. I have to now call my mom at work as we are leaving the hospital so she can go to Katie's class to tell her that we are on our way home. I can't even imagine how she must feel going to school on Wednesday mornings while Mike & I head off to Sloan knowing that there is a chance that he might have to stay overnight in case of an infection or some other issue. It has to be totally overwhelming and scary for her so I am trying to spend more one on one time with her but it is hard when Mike doesn't want anyone but me when he feels crappy.
And boy, does he feel crappy today. He is downright miserable! :( He is just lounging and cranky and seems uncomfortable. In fact, it isn't even 11 AM and he is up for a nap already! :( I don't know what it is, he is just not right today. And he woke up Tuesday morning with a runny nose and I can't give him any OTC meds other than Tylenol so I am hoping it doesn't turn into anything worse than a little cold.
To top it off, I am waiting for a call from Sloan b/c I had to give them a stool sample from his diaper yesterday. They called last night to tell me that the rapid c-diff test came back positive! :( I can't believe this freaking thing may be back! I really wish this kid could catch a break. They did say that the lab told them that there have been quite a few patients lately that the rapid test have come back positive and then the full culture comes back negative. I hope that is the case today with Mike! I will update on that when I get the call later today.
Anyway, his bloodwork came back screwy because of the cold... his white blood count was down and so were his platelets, neutrophyls and hemoglobin. Thankfully once his cold gets better those should all go back up. Probably not the hemoglobin though, but hopefully that has leveled off to where it is going to stay through the chemo protocol.
And speaking of the chemo protocol... just when it is becoming somewhat routine and the way it is for us now, we got the date for our MRI between the induction round and the 2nd round of chemo. January 13th is the day. The day we find out if this chemo protocol we are following is working, if it is getting rid of the tumor(s), if it is stunting the growth of the tumor(s), or if it is doing nothing and we have to change the medication we are using. I know I am not supposed to look that far forward, that I am supposed to take every day one day at a time but the date is in front of me. They wrote it on an appointment card in pen. I have put it on my calendar and I am worried about it already.
Well, I am going to start my laundry while he is napping so I can spend the rest of the day cuddling with him. I hope you are all doing well. Thank you all for your good thoughts and prayers... Please keep them coming!!
Posted by Chrissie at 8:20 AM
Friday, November 14, 2008
suck. I think that's the only way to put it. They suck. Mike has waves of what I think is nausea. I say what I think because he is really too little to tell me what he is feeling. He just comes over with his hands on his face saying, "Mommy up" and I scoop him up into my arms and he just stays there. He curls himself up on my shoulder with his thumb in his mouth until it passes. They usually come about every hour. I feel so bad for him when they come... he just gets that puking look and looks so pathetic and uncomfortable.
The good part about it is that he's 2... so he lets the wave pass and then gets up and runs and plays again like nothing has happened. Not like adults who have that wave and then anticipate the next one.
The jaw pain is also here still. Apparently that won't go away until after chemo ends. I am just hoping and praying that it doesn't get worse. He is still eating though!
He is so tired too. While he used to be able to run around for hours he is now running for about 45 minutes and then he just sits and plays or watches a dvd. He curls up on the couch and lays down and just chills out. His naps have gone from 1 hour to 3 hours daily now. He is up during the night too but he tries to make up for the waking up by sleeping until 8.
It is also getting more noticeable that his hair is thinning. It's mostly on the sides right now but it follows his hair line. I hate finding his little hairs on my pillow, on his shirt, on my shirt... it's such a physical reminder of everything.
I hate what this chemo does...And through it all he plays and laughs and runs and he is just amazing!
Anyway, that's the update on Mike for now. Again, please keep those prayers coming...
Posted by Chrissie at 7:59 AM
Wednesday, November 12, 2008
Well today was week 3 of chemo. It was a crazy morning here. Katie was really upset with us going to the hospital this morning. She was so afraid of us going and not coming home tonight that she was hysterical crying before we left. I was so relieved when we finished the treatment early enough for me to get home and pick her up. She was so excited to see my dad, Mike & me at pickup that she was giddy and hysterical laughing! :) It was great to see that!
Well, onto Mike...he did so well today! He is such an amazing trooper. He still HATES the medical profession as a whole but as soon as they look like they are leaving the room he is ok. That's a big improvement from the beginning when he cried for a few minutes after they left! The fact that he stops crying when they are in the room is a HUGE step forward.
I was told again today that I need to glove up for the first 48 hours of diaper changes after treatment. Chemo is excreted in the urine and since I have to change him I need to be gloved so as not to expose myself to chemo meds. I was so glad to have that tip from Mike's nurse about the Emla (numbing) cream... instead of bandaging it on so that it doesn't rub off into his clothes, I cover it with Glad Press n' Seal! It keeps the cream on without adhesive on his skin so it won't irritate him after a while and it doesn't hurt coming off!! Definitely a HUGE plus for us since accessing the port is a HUGE anxiety-ridden ordeal.
So, his counts, for the most part were great. The only thing that went down this week was his hemoglobin again. It is at 10.4. They start talking about transfusions when it gets down to an 8. I went down to the blood bank today to talk to them since Matt and I have an antigen/antibody issue that could affect our donating blood to him. In fact, they said that neither one of us would probably be good candidates for donating blood for Mike... Matt due to the fact that they don't want Mike to develop antibodies to the antigen in Matt's blood b/c then he would reject the transfusions and me because they don't want to introduce new antibodies to him that aren't necessary for him to have. They are going to type and cross him next week just in case and test for antibody titers and antigens in his blood. If we should get closer to the possibility of a transfusion I will get all the info I can to have blood donations made for him and in his name.
The BEST part of the day was... the surgeon didn't feel a hernia in his scrotum!! He thinks that I may have been right and what he was feeling a few weeks ago was excess fluid from the shunt and steroids. He will check him again in a few weeks to be sure but he was prettu certain that Mike won't need the testicular surgery!! :) YAY!! That is definitely one piece of good news that I needed! :)
Well, I am off to do homework with Katie. Hope you are all doing well!! Please keep those prayers coming...
Posted by Chrissie at 2:38 PM
Friday, November 7, 2008
Here we are, about 48 hours after the administration of week 2 of chemo and already we have waves of nausea and hair thinning. The poor little man just whines and runs over to me to pick him up when he doesn't feel good. I pick him up, he curls up on me, sucks his thumb and just leans on my shoulder. And I just hold him... and we cuddle through it.
The hair freaked me out yesterday. I felt like it is so early for that to start but I guess not. There were stray hairs on the back of his shirt yesterday, in his crib this morning and on my pillow when he laid down with me at 5:30 this morning.
I hate this. I hate that the medication that is supposed to make him better makes him sick. I hate that there is no cure or medicine that isn't so hard on people. I hate that he is 2 years old and going through this.
I am off to cuddle with my little man again. Please keep those prayers coming!
Love to you all,
Posted by Chrissie at 9:22 AM
Thursday, November 6, 2008
What a night we had here!! Mike slept great. He asked to go to bed around 8 and fell asleep within 20 minutes. He even pooped in the middle of the night and let me change him without waking up! Katie, on the other hand, is a ball of worries and stress.
She was up 8 times going to the bathroom. And every time she woke me up and made me come to the bathroom with her. I would sit on the floor and she would sit on the toilet doing absolutely nothing just whining that her belly hurt. Finally, at 5:30 this morning during the 8th wake up she said, 'I'm homesick. I miss Daddy and Pugsley and Tuck'. (Daddy, our dog and the turtle) Now, I knew that was my opening telling me that she was ready to talk. So, I said, 'I know, we both miss Daddy and Pugsley and Tuck but you know Daddy is going to come back up here soon and that in the spring he is going to try to be able to move back to NY to be with us, right'. She said she didn't know that but that it made her happy. So she fell back to sleep. The alarm went off at 6:45 to get her up and ready and she was a bundle of mess. And I mean, a MESS. I decided that this was the time to talk to her. Yesterday was the prep work and now I had to get it out of her.
So, as I went to get her uniform I told her that I know everything that is going on is scary and I know that she is confused, upset and worried but that I hoped she knew that she could ask me anything and I would answer it the best that I could. So, finally it started...
Why do the kids in the hospital not wear hospital gowns?
How do they get the tubes on the kids?
How can they run around and play with the tubes coming out of them?
Do the tubes hurt when they are playing?
What happens if they run too fast and forget the pole? Will the needle come out and hurt them?
Why did some of the kids not feel good and just lay down while they were getting their medicine?
Why does the medicine make some kids sick? Isn't it supposed to make the kids better?
Why do a lot of the kids have no hair?
Some of the kids have stitches in their heads. Why didn't the stitches hold their hair in?
Will Mike have no hair?
Why are all of the kids in that hospital?
How did Mike's tumor get in his back and brain?
How did K's lump get behind her eye? (K is a girl in her class w/ a benign brain tumor near her ocular nerve undergoing chemo at Sloan too... Katie just doesn't get away from it so I know that is hard on her to see her friend not feeling well while she is seeing her brother not feeling well.)
When I wash my hands I feel my spine move. Is that ok? (This one killed me... I felt like it really got to the bottom of a lot of her worry)
I really answered all the questions the best that I could while trying to make the answers 6-year old friendly. She is so bright and intuitive that I didn't want to downplay or not answer anything so I did answer everything and was honest about everything. I told her that we don't know if Mike would lose his hair, that stitches don't hold hair in but put the skin back together after an operation, that the tumors and lumps have been there for a long time, that the nurses bandage the tubes in the kids well enough that they won't come out, that the medicine sometimes makes the kids tired and bothers their belly because it has to be so strong to get rid of the bad tumor cells and that it really is ok that her spine moves when she washes her hands, that she is healthy and smart and definitely the best big sister out there.
This poor kid has so much going through her head. I was so glad that she was able to come yesterday to see everything and get the flow of questions going. I think she really needs that. I will definitely be spending a lot of one-on-one time with her as often as I can because I know she needs that.
I keep reminding myself, I don't get it. I don't like it, it makes me crazy and worried and stressed and upset... she's 6. I can't imagine what goes through her head. I just hope that she keeps asking questions and talking to me about it.
Anyway, I just wanted to share this morning with you all. Thank you again for your prayers, please keep them coming!!
Love to you all,
Posted by Chrissie at 8:10 AM
Wednesday, November 5, 2008
Ok everyone, I know, I have really been slacking on updating this blog. It has been so nutty here that I just haven't had time to sit and really update.
One of the problems I am having is that I don't know anything about any of this stuff. I don't know what's normal on chemo and what isn't. I don't know if little things Mike does are chemo related or if they are something else. On Sunday Mike started holding his face right under his ears every time he sat down to eat. He would grab his face for the first and second bites and say 'Ow'. Now, it could be teeth coming in, it could be another ear infection or it could be something chemo related. Today I found out it is probably chemo related. The Vincristine causes big joint pain and one of the first places it comes out is in the jaw. So, looks like side effect number one has arrived.
While we are on the topic of side effects... side effect number 2 is here as well. And it is causing a number 2 issue... constipation. Good Lord, I feel like I have a colic-y newborn again. The poor little guy is so uncomfortable. He will be ok and then all of a sudden you can tell he is not ok and he is whining, 'Mommy UP' and once you get him in your arms he folds his knees into his chest. Or he will just lay down and curl up with his knees in his chest. There are days he doesn't go and then the next day he is extremely miserable because not only did he not go but he had been up 4, 5 or 6 times overnight w/ belly cramps. It really is heart breaking. We have him on a stool softener but it isn't helping enough to really make a difference. The NP today said that we should change it to another one. I am hoping that one works because the poor kid has some really bad moments. :(
Katie had a crappy week. She had a great time at a Halloween party with girls from her class on Sat night but then on Sunday she started complaining of her belly bothering her. She had the opposite issue of Mike... she went all day on Sunday. And all night Sunday night. And of course, she couldn't get up when Mike was up, she had to get up right after I fell back to sleep from getting up with him. So, needless to say, she didn't go to school on Monday. She was doing fine at home that day so I sent her to school on Tuesday... only to get a call to come get her after lunch. The poor kid was absolutely fine all day at home after I got her. She is really too much like her mother, worry and don't talk about things until they make you sick. That horrible sour, sick stomach and that just want to cry feeling. I think that the anticipation of today got the best of her.
So, that brings me to today. Day 1 of week 2 of the 10/12-week induction phase of chemo. Katie came with us today. She had a 1/2 day of school so I had decided last week to take her out for the day and have her talk to the Child Life therapists at the Pediatric Day Hospital. I think it helped her a lot to get in there and see where Mike goes every week. Now it isn't this scary place that we talk about but a fun place where Wednesday is 'Make your own pizza day' and there are clowns in lab coats walking around, where all the nurses are so nice and there are small boxes of cereal in the family pantry and toys and crafts in the playroom. She let the child life therapist talk to her but she stayed very quiet during the whole thing. For those of you who know Katie, yes, I swear, she stayed VERY quiet. She has, unfortunately, inherited the L*****o gene that tells you, 'if you don't talk about it, it isn't happening'. Yeah, it's a great defense mechanism in the short term... long term it sucks. It was hard for her to see the kids there though. Even though they were playing and laughing, they were hooked up to IV poles and bald. Can we say, 'tens of thousands of dollars in therapy coming her way?'. But, all in all she had a pretty good day. She made her own pizza, decorated her own umbrella and played for hours. Mike was so excited that she was there too. I swear, and I say it ALL the time, SHE is his best medicine.
And onto Mike and Chemo day. The ran his bloodwork and his hemoglobin level is down. Apparently that's normal for people on chemo. They said he may show signs of getting tired faster (hasn't showed that sign yet!) but it wasn't low enough to warrant talking about transfusions. Normal is 13, his is at 11.3 and they start getting worried at 8. So, he's ok. We have orders to see a pediatric Gastro-intestinal Dr so that we can talk about starting to introduce lactose and soy since he is almost 3 and it should be ok to slowly start that. The neuro-onc Drs feel that we should have a GI Dr watch him with that since they know the intolerances better than the oncologists. And speaking of specialists... the neuro-onc team got in touch with a pathologist in Texas that I asked them to speak to. This Pathologist studies unclassifiable and unidentifiable tumors and tests them to see what chemos will work best on them. I am anxiously awaiting the pathologists response to the Drs here to see if he would be willing to take Mike's case and what we have to do to get that done! I don't care what needs to be done, I will do it if these Drs think that this pathologist can really figure out what to give him to get rid of these tumors! Now, onto the nutritionist. She gave us a sample of a supplement to try to give to Mike since he has not only 'picky eater syndrome' but the intolerances and now the jaw pain and constipation. I have to figure out a way to get him to take it b/c it smells like crap... I tried to get him to drink it by itself today and he took one sniff and ran! I am going to have to get very creative with this...
Anway, please think good thoughts about this pathologist in Texas! I know that whatever happens happens for a reason but I can't believe that I found this person and we can't benefit from him! And PLEASE, please, please keep those prayers coming!!
Love to you all,
Posted by Chrissie at 6:08 PM
Saturday, November 1, 2008
I just wanted to share some pictures from yesterday for all those of you that are reading and whose e-mails I don't have. Both kids had a BLAST yesterday. I am so grateful that Mike was feeling good enough to enjoy the day. He ended up crashing at 7:30 last night and didn't really have a restful sleep so we are just going to relax today. Here are some pictures of Dorothy and Dino Mike :)
Posted by Chrissie at 7:30 AM
Thursday, October 30, 2008
Thank you to everyone who e-mailed, called or left comments on my MySpace and Facebook to check in last night. I am sorry I haven't updated before this but I was exhausted last night and just wasn't awake enough to post anything.
So, we got to the hospital at 7 yesterday morning. We were scheduled for a 9AM spinal tap procedure. I wasn't thinking on our way in and was hoping that they could access his mediport while he was under. When I got there they reminded me that he needed to have the anesthesia for the procedure and that the Drs would administer that through the port. I got the Emla cream out to put on the site to numb it and we waited about 1/2 an hour for it to take effect. I really think the anxiety of the port access is worse than the access itself. We have to hold Mike still so they can put the needle in the port and I think he hates being held down so much that it just makes the access worse. Anyway, after they got the port accessed we went to the playroom. He was running and playing and then they came in to get him. We went to the procedure suite and waited there for the nurse to come out and get us. When she did she told Matt and me that we were supposed to come into the procedure room with Mike and hold him while they put him to sleep. I wasn't allowed to do that in Florida and I wasn't allowed to do that for the surgery last week b/c they had to intubate him so I was not too thrilled with that but in I went with Mike in my arms yelling and crying. When we got in the room he was still screaming and the anesthesiologist started talking to us. We signed the consent for the anesthesia and she started pushing this milky white stuff (prophephol (sp??) into the tube connected to the port. Before she even got 2 ccs in him he was quiet and they told me that I could lay him down! He was zonked in a matter of seconds... I couldn't believe it! The procedure lasted about 10 minutes and they came out and told us that he was fine and in the post-procedure room recovering. The nurse brought a sleeping Mike out a few minutes later and we were on our way to the day hospital bed area.
We got to the bed area around 10 in the morning and he woke up like he had never slept at 10:15!! At 11:30 the Dr came in to talk to us about the chemo and to have me sign the consent form for the protocol of chemo that Mike will be on. It will be 62 weeks in total as long as this chemo seems to be working, the side effects aren't too bad and his blood counts stay on track. If any of that doesn't happen then the chemo will be longer and might have to be changed. So, after we signed the consent for the chemo the Dr had to order it. The nurse came in to talk to us and she was lovely! We are very happy with all of the nurses there... and our nurse seems so sweet, very informative and is so good with Mike.
Around 12 we went to the playroom and played...and played... and played...until 2 when Mike was so tired and the lunch finally came! He had his eggs and ketchup (or ketchup and eggs as it ends up being! lol) and then at 2:45 he was just so tired that I climbed into the hospital bed with him and held him. He fell asleep around 3 and then at 3:15 the nurse came in. She talked to Matt and me about the meds she was putting in the IV. The first was the Zofran, an anti-nausea medication. That dripped for about 25 minutes. Then she came in with the first chemo medication, VinCristine. It is a very small dose but as she put it, 'It's small but very powerful' and to that I said, 'just like Mike'. She got ready to put it in the tube and I found myself crying. I was just so overwhelmed and didn't know how to feel that I just cried. My 2 year old was then officially on chemo. She pushed the syringe of meds into the iv line and then hooked up the 2nd medication, Carboplatin. That dripped for about an hour and then she flushed the line and put some heparin in the mediport so that a clot doesn't develop and prevent the use of the mediport. Thankfully, there was no allergic reaction to any of the meds and he tolerated the first dose just fine.
We were finally able to leave around 5 pm. Of course, that was prime rush hour traffic time but we were just so glad to get out of there we didn't care. Mike watched his DVDs in the car. He was laughing and talking the whole trip!! When we got back to my mom's he was running and playing with Katie and my sisters until bedtime!!
He is such a strong kid. I am so proud of how great he did yesterday. It is amazing to see all of the kids there going through so much with smiles on their faces. It was Matt's first time being at the Pediatric Day Hospital at Sloan Kettering and he didn't realize how hard it is to go there. He was quite overwhelmed. No matter how cheerful and fun they try to make it, it's a children's cancer facility and there is no way to get away from that. I think it is just a testament to the people that work there to have the kids go in and have fun, laugh and smile while they are there.
Anyway, 10 hours, one spinal tap and the first of 60 weeks of chemo is done. I am off to make breakfast for my tough guy. Thank you again for the prayers and love and support. We hope you are all doing well...
Love to you all...
Posted by Chrissie at 8:25 AM