It's been a long time since I have posted here. I skipped posting last year, mostly because I missed Dr. Ebb's call with the counts and I love to have my numbers.
Today, Max and I had a great day. We went into Boston early and visited the Aquarium. I let him choose something special and for three years in a row, that's been his choice. It wasn't too busy and we had a wonderful time. Then, we walked to the North End, grabbing a hot dog on the way, got pastry and gelato, and took the T to MGH.
It was nice to see the team at MGH. It's especially nice to see how relaxed Max is there, even if he didn't really talk to people (as he tends to do with new people or people he doesn't see often). It took a while for Dr. Ebb to get him to open up, but when Dr. Ebb asked about Minecraft, Max was happy to tell him everything about it. Dr. Ebb said he looked and sounded great and barring any surprises in the blood tests, we could go another year. We did talk about the leg pain Max often gets at night, and he ran chemistry labs to see if anything was abnormal with his magnesium, calcium, or potassium.
We headed back to the train as soon as the blood draw was done, but Dr. Ebb called when we were almost home. His counts were great. His white count was 5.1, with an ANC of over 2K. His platelets were 171 and his Hematocrit was 37.5, the highest it has ever been since we started testing. His retic count (baby red cells) was on the low end of normal, but still in the normal range and based on the hematocrit, his body is obviously making red cells so Dr. Ebb was unconcerned. The chemistry labs were all normal, too, though his potassium level was on the low end of normal so he suggested eating more bananas but that was about it. Nice and boring results, just like we like.
We will see them again July 1st of next year.
Tuesday, July 02, 2013
It's That Time Again
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Wednesday, July 28, 2010
Huge Milestone - CBC 07/28/2010
Today was Max's 6 month appointment. We went into MGH at 10 AM, saw Dr. Ebb, got his blood drawn and then Dr. Ebb said that even without looking at his counts, he seemed to be doing great and unless we got some surprises when the CBC results came in, we didn't have to come back for a full year. I have to say that I really thought this day would never come. It is such a huge milestone. I remember about 2.5 years ago, when he was still going biweekly asking Dr. Ebb if we were going to be going several times a year for the rest of his life and him saying that he had teens who had to be dragged in once a year and that he was optimistic that it would be like that for us. That seemed like such a far away dream though. And now here we are. I can barely believe it, and the thought brings tears of happiness to me. It also brought Max to tears for a different reason, which made me chuckle. He was genuinely sad to hear that he wouldn't be going back to the hem/onc clinic for another year. He said he really likes Dr. Ebb and will miss him and asked if we could go for a visit sometime. I suspect I can work something out.
After the appointment, we took the T to the Haymarket stop and walked up to Hanover street for a couple of slices of pizza. We had James with us and both boys really enjoyed their pizza. We then directed a tourist family away from Mike's Pastry and towards Maria's and Modern Pastry (lol) and headed to Maria's, picked up pastries and gelato, and then walked over to the Rose Kennedy Greenway to eat and play in the fountain. Then, Max talked me into taking them to the aquarium, which I love but is really expensive. We really enjoyed it and even got to see the seal show, which I don't think I have seen since I was a child. A quick T ride back and we retrieved the car from the lot and headed home in rush hour traffic. Both boys fell asleep about 5 minutes into the ride. I, wish I could have, too, as I was beat, but in a good way. Wearing a 22 pound child for over 4 hours makes for a very good workout.
I missed Dr. Ebbs call (I think he called when we were down in the Jellyfish area and I didn't have service) but his counts were great (I called back and one of the nurses gave them to me). They took longer than normal because he ran a bunch of liver etc function tests as well as a retic count, which he hadn't run in at least a year. Everything came back normal. Here are the results.
WBC: 6.5
PLT: 203
HCT: 39.5
HGB: 13.1 (I think. I was writing in crayon on a dry cleaner tab while in stop and go traffic merging onto rt. 93 and it is a bit hard to read that one.
ANC: 3580
I still feel like it is a dream.
Oh, I forgot something. Dr. Ebb told me that they have a new patient at MGH who was about to start treatment for SAA. I told him that if his parents wanted to talk to me, I would be happy to talk to them. I remember how terrified I was, and how much better it made me feel to talk to a mother whose son was doing really well after treatment. It is such a rare disease that it is hard to find anyone who has had to go through this and so often, the news if you Google is just not good. He said that there was a language barrier but that he would tell them anyway. Either way, I hope the boy does as well as Max has done.
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Sunday, July 18, 2010
May the Force Be With You
Max wanted a Star Wars birthday party. He actually wanted a costume party, but I was w
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Wednesday, July 07, 2010
I Just Had To Share
I posted this on the family blog: http://joshmaz.blogspot.com/2010/07/sibling-rivalry.html but really wanted to share it on here, too, as it shows what an amazing heart Max has.
And for those who are wondering, he was supposed to have his 6 month checkup this week but we moved it out two weeks because I work every day this week and he is going to "camp" next week. I am anticipating good news. Hopefully I will not be surprised by anything.
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Friday, June 11, 2010
The Club
Two days ago, it happened again. Another family that I have some connection with (albeit not closely. I am familiar with the mother because she posts on Thebabywearer) found out that their child might have cancer. A mutual friend of ours asked me if I had any suggestions for what to do for the child and the family. I sent a list to her, mostly suggesting craft things for the child - something that will be fun to do when stuck in a room that he can't leave for days on end and gift cards for food and parking at the hospital. It is amazing how much you can end up spending just on parking (my friend Sally suggested gas cards, too, which was a great suggestion. We spent a ton on gas, but I guess because we were going to the same gas stations that we always went to, it wasn't so obvious as the 16 dollars a day we were spending on parking.). But as I was writing it up, I was amazed at how once again, I could feel the panic in my heart like it was my child. I could hear Dr. Sanders on the phone telling me the bad news as if it was yesterday. My breathing changed, my heart tightened. How I feel for the parents. They will never be the same, even if they are as lucky as we were and everything goes well and three years later they have a healthy child who barely remembers the experience. Before Max got sick, I would hear stories of sick children and they would make me sad but it didn't go past that. I couldn't relate to it. I hoped that the child would get better, but I didn't understand what it all meant for the family. It changes everything. Sally and I were chatting today about the worry. When does it go away? Does it go away? It has been three years of remission for both of us now, and yet we both dread the checkups. We talked about the fog that you are in after the diagnoses and through treatment. She described it as being in the twilight zone. I feel like I sleepwalked through a large part of a year. It was at least another year before I started feeling normal again. I still feel like I lost a part of me during it all and I don't think I will ever get that part back.
The bright part I suppose is that our perspective is different. The things that seemed big before often don't feel big anymore. Even Josh's job loss didn't seem as big a deal as it probably should have seemed. Maybe we worry the same amount as other people, but just worry in bigger chunks?
Thinking about it makes me tired.
I hope that little boy does well. I hope they find that it isn't cancer, and if it is cancer, I hope that he responds as well to treatment as Max did. I know how lucky we were. I count that blessing every day. I hope they are as lucky. May the fog lift for them quickly. Their son has the most amazing smile. May they see it often and may it bring them light. I know seeing Max smile and laugh made it easier for us.
Mostly, I wish nice families and children in general never had to face life threatening illnesses.
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Monday, April 19, 2010
Where the Wild Things Are
Yesterday was a rainy day with nothing planned. Max decided to make hats. I am not sure what prompted this, but he started off making (with my help) a "knight's hat" and then moved on to a crown. After it was finished, he ran around the house with a stick that looked like a sword in his belt loop, wearing his hat. I look at him and realized how much he looked like Max from Where the Wild Things Are so I had Josh take some pictures. After the pictures, we went to the grocery store. The kids wore their hats (Lauren had a purple and white hat that she called a "square pirate hat" which was neither square nor resembled anything I have ever seen a pirate w
ear but she was happy). We got a lot of looks and several comments. The comments were all positive, especially from the many children at the grocery store that morning). I am not so sure that the looks were all positive, but the kids were happy and that is all that matters. What good is it being 6 if you can't wear a homemade paper crown to the grocery store.
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Friday, February 19, 2010
Long Overdue
I have been a baaaaaadddddd blogger. I haven't posted in ages. I am not really sure why. Sometimes, it is just tiring to think about. Max's illness at times feels like a lifetime ago. I have long periods where it just feels like a bad dream that is starting to fade from memory. It is nice not to think about it all the time. Plus, as much as anything, not much has been going on. Max is doing great, for the most part. He loves school so much that he was not happy to have a long weekend over MLK weekend. He seems to be thriving there, though we still get the same old could do a bit better at focussing comments. He is the best reader in his class and is reading like crazy around the house, which I think is so cool. We went to dinner a few weeks ago when visiting my father and I was going to do what I typically do, which is look over the children's menu, decide what if anything was on there that I was willing to feed my children (sometimes I will have them order off the regular menu and split or get appetizer size things or split meals with them) and as I started to read the menu, Max said "I want a hot dog and chips." I stared at him for a second, and then said "oh yes, you can read the menu, can't you." So much for that trick. :) Prefirst has been very good for him, I think. I don't think he is overly challenged by the curriculum, but he doesn't seem bored, which is what I feared. He flies through his homework most nights, often finishing the entire week's packet in a short sitting the first evening. I have compared this to the workload that our neighbor's first grader (who went to K with him) and it is much lighter, which is nice for both of us. However, sometimes he rolls his eyes about it and mutters that it is just like kindergarten. They did a great job at his school last year. He learned to ski this winter and just finished 6 weeks of lessons. He did struggle a bit with it, and his instructor said it was because he lacked lower body strength. I was pretty surprised by this, to be honest, and am going to try to do more activities that involve building up the strength in his legs. I suspect there will be a lot of bike riding once the weather warms and the days lengthen, especially seeing as James will be old enough to ride in the trailer this summer so we can go out as a family (I haven't been on a bike ride since I got pregnant with Max and am really looking forward to it). His swimming has greatly improved and he can swim independantly now and will even go under water willingly, though only with goggles on. He is going to take one last swim lesson series this spring and then I think we will be done with swimming with him. He likes to play around in the water, but doesn't love it like his sister, so we will see if there is another activity he would rather participate in. We got where we wanted to get, which is he can swim well enough to save himself if he falls in. He is also doing Tae Kwan Do at the school where I work. The instructor offerred free lessons to teachers' children and I jumped on it. He really enjoys it and even got to break a board. I will see if I can get Josh to post some pictures of that as it was pretty cool, though unfortunately I missed it as I was teaching. This may sound like he has a ton going on, but we try hard not to overschedule the children. We took the winter off from swimming so that he could ski. I think two activities is plenty. Last week, one of my students was saying that she and another student had the same number of after school activities, 6. These were second graders. I just can't imagine. That sounds like so much for a child. I know that doesn't make me a normal American mother in this day and age, though. Hopefully he will not regret that we didn't have him in more stuff later in life.
As far as Max's health goes, he has been mostly healthy, but seems to be struggling with ear issues this winter as he did last winter. It is actually affecting his hearing and he saw an audiologist on Wednesday. She tested his hearing and he had hearing loss in both ears (he had failed in one ear at the pediatrician's office) but said he had some fluid in his ears and that another test showed his hearing was fine past the fluid point so she was not concerned. I hope the ear infections stop. I have no experience with them at all as I have never had any problem with mine and none of the children had them until Max started having trouble last winter. We will play it by ear (no pun intended).
I guess that is about it. I will try to add pictures later. He has grown so much. He doesn't at all resemble a little boy anymore, though sometimes he still just wants to be snuggled with and held. He seems to big compared to Lauren and James that it is easy to forget that he is just a boy sometimes. I miss him so much when he is gone all day, though. And I am grateful that he still likes to sit in a chair with me or snuggle at bedtime. I know that will pass far too soon and I try hard to treasure it.
Oh, and the long ago promised CBC stats from January:
WBC: 4.9
HCT: 35.9
HGB: 12.8
PLT: 196
ANC: 255
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Tuesday, January 05, 2010
Some Things Don't Change
Wow, 6 months between appointments went really quickly. Max's check up is tomorrow. Where has the time gone. I have been really bad at posting. I suppose part of it is that everything has mostly seemed normal. Max is doing well. He has been healthy and settled into school and his illness so often feels so very far away. Sometimes I can't shake it, though. Today is one of those days. I have been on edge since Sunday, snapping at everyone, feeling tense, pacing, not being able to settle. I couldn't figure out why. You would think that with the kids back at school, things would be less stressful. Well, it struck me this morning. The appointment. Tomorrow. The closer it gets, the more wound I feel. Josh doesn't get like this. I am jealous of his ability to be so sure that everything will be just fine all the time. I keep hoping that I will be able to get like that again someday.
I will post tomorrow when I get home. I am sure it will be fine. There is nothing to indicate that it won't. He has another ear infection, I suspect, but other than that, he is healthy, his color and energy are good, no bruising etc.
I found myself snuggling with him last night at bedtime, remembering just how lucky we are that he is in our lives. Then I snuggled with Lauren and finally James. I am so thankful for all of them.
Happy New Year everyone.
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Sunday, December 20, 2009
Happy Holidays
I just wanted to take a moment and wish all of our friends and followers a very happy holiday season. Thank you for all the thoughts, prayers, and support you have given us over the past few years. This photo was taken recently after decorating this year's Christmas tree and donning our traditional Santa's helpers hats. Max, along with his little sister and new little brother, really enjoyed helping Daddy hanging ornaments on the tree and we are all looking forward to a happy and healthy holiday season. We wish all the best for you and your family as well. Happy Holidays!
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Saturday, August 08, 2009
Toothless Grin
Max finally lost his first tooth about a week ago and lost a second one last night. He has a very cute (well, I might be biased) gap now. I told him that I wanted to get "a picture of the toothless grin." He asked Josh to take a picture, but somehow, between my telling Max and Max telling Josh, it became "a picture of the tooth coming in." When I walked in on the picture taking, Josh was trying to get Max to show off his gums and getting frustrated that Max kept making funny faces. After I corrected the misunderstanding, he was able to get a very nice picture, but the bug-eyed shots were actually really funny so I wanted to share one of both.
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Friday, July 24, 2009
CBC - 07/24/2009
Dr. Ebb called us on Tuesday night to see if it was okay to change Max's appointment, so we went today. Max and James and I headed in this morning, took the T over to the North End for a quick lunch, and then headed to the hospital. It was an uneventful appointment. Dr. Ebb was thrilled with how well Max looked and sounded and said that if his counts were good, we could start going in every 6 months. Well, his counts were great, so we don't have to go back until January. That hardly seems possible. Max is thrilled.
I had to drag him out, though. Max loves playing there, and build stuff with a volunteer. It was a nice visit.
The most noteworthy thing that happened was his height and weight. He grew 6 cm since his last appointment and is now just shy of 46 inches, and gained almost 4 pounds. I was pretty sure he was going to show a weight gain. He has been eating everything in sight. People kept commenting on how big he had gotten and one of the nurses said his face had changed so he didn't look like a little boy anymore. It is very true.
There was a woman in there with her son, who looked to be around Max's age. They boy looked sad and scared. I remember that feeling. I just wanted to hug her. We are so very, very lucky.
WBC: 8.0
HCT: 35.9
HGB: 12.6
PLT: 186
ANC: 4540
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Tuesday, July 21, 2009
He's 6!
Max turned 6 over the weekend. He had his first real "friends" party, and the kids all tie dyed shirts. It was a bit hectic, but a lot of fun, and at least our kids are thrilled with their shirts (and we did a dress for Lauren).





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Tuesday, June 09, 2009
Kindergarten Graduation
This is going to be another one of those sappy, I can't believe we did actually get to see this day posts. I seem to be having a lot of them these days. That is probably because there is so little news these days that I get to talk about the good stuff. I wonder when I will stop feeling amazed that we got to see them happen, though.

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Thursday, May 21, 2009
Emotions
Max has his first loose tooth. First and second actually. He hadn't noticed, but the dentist pointed them out. I am not surprised, as many of his classmates have already lost a tooth or two (he is one of the youngest in his class, but a couple of the girls who are his age have lost them, too.) I am surprised at how emotional I am about this, but it made me well up with tears of happiness. It is one of those odd little nothing things that I wasn't sure we would ever get to experience with him. I am always surprised at the things that hit me. It is rarely the big events, usually little things that I remember enjoying as a child. Apparently, loosing a tooth was one of those things.
Max is almost done with Kindergarten. He has two and a half more weeks. The year has really flown. He has gotten so tall and doesn't seem like my little boy most of the time. But, he still likes to snuggle at night and tells me he loves me. He adores James more and more every day. I love my little big boy so much.
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Friday, May 01, 2009
2nd Anniversary
Two years ago today, Max stopped taking the cyclosporene. I can't believe it has been two years already. In some ways, it feels like a lifetime ago, yet it also feels like just yesterday. I look at him and can't believe how well he is doing. I still worry, I guess that may never go away, but he is strong and healthy and happy and we are so very, very lucky. Today the three kids and I went to Boston with Grandma and Grampa Rich. Grampa and Max went to the Museum of Science while the rest of us went to the North End for lunch first and then met up with them. Max had a blast and didn't even fall asleep on the ride home. He has so much energy and is so strong. We really need to take a trip on the Duck Boats one of the days. I still remember so clearly us watching them go on the river while in Max's hospital room when we first found out he was sick, and
saying if we ever got out of there, I was taking him on the Duck Boats. But then, when we did, his immune system was not strong enough, and it was over a year before we could go, and it just never happened. I am going to make sure it happens this summer. He talks about them every time we are in Boston.
I think almost every day how lucky we are. I still can't believe it. Two years.
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Wednesday, April 22, 2009
CBC-4/22/2009
Can you believe it has been three months? Where does the time go. Max had his checkup today, so of course he started it out with waking at 5:30 with an earache. We had Earth Day plans of taking the train in, but decided to drive in case he wasn't feeling well. However, he was fine the entire time. Dr. Ebb was over at the main hospital, so we saw Dr. Huong for the first time in a very long time. She is always very pleasant. She said he looked good, but took a look at his ear and thinks he has a minor ear infection. This was the fourth earache in the last couple of months, so I knew something was going on and was going to go to the pediatrician after this last one, so it was nice that she could look at it. He did not enjoy having his ear looked at, in fact disliked it as much as the blood draw, but other than that, it was a pleasant visit. The music therapist was there and he got to spend some time with her. She had all her big instruments with her and he even got to play a real harp. James was a sweetie for the whole visit and Josh took Lauren to the Aquarium to look at the seals while they waited (and apparently they also happened onto an Earth Day celebration which she loved). After the appointment, Max and James and I took the T to the aquarium and met up with Josh and Lauren. Then we walked to the North End and had pizza and then canolli. Unfortunately, by that time, our 60 degree and sunny weather had changed to heavy rain, so we went back to the T, took it back to our car, and drove home.
His counts were good. The 30th will be the 2 year anniversary of the last day of cyclosporene. Amazing.
WBC: 8.7
HCT: 36.9
HGB: 13.5
PLT: 198
ANC: 6070
His white count and ANC are a little higher than we usually see, though still in the normal range. This is probably because of the ear infection. His platelets and reds were great, though, which is wonderful given his history of having them drop when he is fighting anything. I couldn't ask for more.
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Friday, February 27, 2009
Keeping a Family Tradition Alive
My father was a magician. He used to entertain us with many magic tricks. I always loved it when he did. He taught my brother and me many of the tricks, and my brother got to be very good at it (I wasn't too shabby but he did a lot more). Max has decided he is very interested in magic tricks and Josh's sister got him a book of magic tricks for Christmas. He has been studying the book quite seriously and a couple of nights ago, treated us to a surprisingly good performance of a penny
trick. It was a ton of fun for all of us.
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Tuesday, February 17, 2009
Max's Baby Brother
I posted about this on the family blog, but wanted to include something here, too. On February 5th at 10:35PM, we welcomed James Philip Mazgelis. He is a real joy, and after 9 months of me feeling more in shock about expecting another child, I feel so lucky to have him. Max has been thrilled since day one to be getting a new sibling, especially a baby brother, and he has been so great with him. He is proud and happy and can't get enough of him, not even complaining when I have to bring James to snuggle bedtime with me. He is going to be a really great big brother to James, just as he is with Lauren, despite their bickering.
We did successfully bank the cord blood. I used a birthing stool when pushing him out and gravity caused the poor midwife some grief for the collection, but Cord Blood Registry confirmed that they got a large enough amount.
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Tuesday, January 20, 2009
CBC-01/20/2009 and Other Random Stuff
Wow, my last post was mid November. No wonder people are complaining. Sorry, we had a hard December, plus I am very pregnant at this point and just plain tired. Things have been pretty uneventful since my last post. Max has been doing really well, despite a 5 day stomach bug that started Christmas Eve. He managed to enjoy Christmas day despite feeling under the weather, though. His favorite gift - Spiderman Bandaids, though his R2D2 figure and a Lego set were close second. Max continues to love school and is learning tons. The bad news is that his teachers continue to express concern about his lack of focus and attention when things do not interest him. I have a bad feeling this may just be something that we deal with in school. He is obviously bright and creative, but if he isnt' interested in something (like coloring within the lines), he just doesn't do it. I am not sure if this is a result of us coddling him when he was ill or just part of his personality. It seems to worry me more than anyone else, though. But, that is how it works with mothers anyway, right? He and Lauren have been enjoying the snow storms we have been having, and helping their dad clear the driv
e with their new shovels. He got to go tubing with Dad at the end of the Christmas vacation, and gave it a big thumbs up. He is also very into Harry Potter, after spending many days at my teaching job during the week that school was closed here after the ice storm (they have a Harry Potter game on PS2 there and he has gotten pretty good at playing it). We are currently reading HP1 at night. It is the first time he has had any interest in a chapter book. When we are not reading HP1 to him, he is reading to us, as his reading skills are really taking off.
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Wednesday, November 19, 2008
A Boy and His Droid
Last weekend, Lauren and I flew to Georgia to visit a friend of mine and her family. Josh had told me that I should take a weekend off sometime, and she wanted us to come visit, so we did. Josh actually meant for me to leave both kids, but I thought this was a better compromise. It was actually very relaxing for me even with travelling by plane with Lauren, who, while a good traveller, didnt' sleep in either direction. Max was quite upset the week leading up to the trip when he realized that Lauren and I were going on a trip without him, and we dealt with a couple of days of bawling and begging to come along. I pointed out that he was going to have a special weekend with Daddy but he wasn't buying that. He wanted to go with us. I told him that he and Daddy would get to do special stuff, and had a few things in mind, but when I suggested them, he said they were things he did with me (zoo, museum, etc). I asked him what he liked doing with Daddy and he said "Working in his workshop" so I requested that Josh plan something for the workshop. We also promised him a nice
dinner at his favorite restaurant (sushi, what every 5YO loves, right?). Finally, I bribed him with a trip to The Little Gym, which seemed to satisfy him, though we were still a bit nervous that Saturday morning would bring an anouncement that he was packed and ready to go. However, instead, he happily helped us check in and carry our stuff to security, gave happy hugs, and went off with Daddy. Phew.
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