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.

While we were gone, they did have a great weekend. Max got to try a class at The Little Gym, which had been Lauren's thing (we have had to cut out most activities for financial reasons, including this, but hopefully we will be able to get back there one of these days), and he got his sushi and other fun meal experiences, but the highlight was working in Daddy's workshop. Max has been very interested in Star Wars. It is funny, as we have not let him watch it (you should have seen him when he discovered we had the original trilogy, but has accepted that we feel he is too young to see it) but many of his friends have, and so many kids are very interested in Star Wars. Max has been especially interested in R2D2, which kind of goes along with his interest in robots in general. It was a multiday project, from what I understand, and has gotten two coats of paint since these pictures, but both Josh and Max are rightfully proud. Now he wants to make an X-Wing fighter and a C3PO, which Max said is going to be bigger than him because the real C3PO is bigger than him (Josh is so excited about this, I am sure ;) ).

A side note: Max barely seems to have missed me while I was gone, which is probably a good thing, but it is very apparent that he missed Lauren. When we returned, he yelled "LAUREN!" as soon as he saw her and started running towards her (she yelled "Max!" and ran towards him while I cringed at the expected collision, but actually, they managed to hug without injuring each other) and couldn't wait to tell her all about his weekend. He was very disapointed when she fell asleep. I am glad they enjoy each other as much as they do.

CBC - 11/10/2008

We actually went longer than two months between appointments this time around, as we were scheduled for last week, but cousin Sophie's birthday was on the same day and we do have our priorities and wouldn't have missed that for anything. :) I had originally planned on taking Max out of school for the day and doing a whole Boston trip with him, but between a teacher's workshop on Friday, Veteran's Day tomorrow, and having to miss a day for the allergist a few weeks ago, I decided to just do a pop in and pop out this time around. It went well, except that I think next time I will try to go straight from school to the hospital because getting settled in the house before we left made for a difficult start. However, once we got on the road, we were in and out quickly.

Dr. Ebb saw us first thing today (probably because we were running late) and brought in two stethascopes so that Max and Lauren could have one to play with while he asked his normal questions: any illnesses, bruising, lack of energy, anything else notable, how has he been doing, how are we doing etc. Every time I go there, I am reminded how lucky we are to have him. I know he is incredibly busy, and yet he always takes the time with us. Then he looked Max over and said he looked great and said we could come back in 2-3 months. This was before getting the labs done, he just felt by looking at him that he would be in good shape. Oh, for those who remember that we never got the ANC last time, it was 1800. The nurse came in and did Max's blood draw, which was a lot less traumatic than last time. He had brought a bear to snuggle which seemed to help. He did balk at the first attempt, but I just gently held his arm and she did the draw quickly. While he complained for a second, as soon as it was done, he was all happy again, especially when he found out he was getting a Spiderman bandaid. Then, Lauren wanted her turn. I never thought I would be happy to say that she has a pediatrician's appt on Thurs, but never was a child so looking forward to seeing "my doctor."

Dr. Ebb and I talked about saving the cord blood, and he talked with one of the nurses who has a lot of experience with it and got a form from the Cord Blood Registry. He, as Max's doctor, needs to send them a letter. He said he would start the ball rolling, but suggested I check back in with him and make sure he remembered to do it. Then, I bribed the children to leave (seriously. They did not want to go, but I wanted to beat traffic) and headed home without the lab results. Dr. Ebb said he would try to call but that he had a family thing to take care of and if the labs came back before he left, to just call them.

Around 4:15 (right after we got home), I called the clinic and left a message and about 15 minutes later, Suzanne, one of the nurses, called with Max's labs. About 30 seconds after picking up with her, Dr. Ebb called my cellphone. I ended up talking with both of them because she had all the labs but he wanted to talk about the results. They were very good. His retic count was a bit high and his red count a bit lower than in the past (I think) which isn't a bad thing, but Dr. Ebb suspects that his counts dropped a bit when he was sick. The retic count shows that his body is making red cells to make up for it, so that is a good thing. I don't like that he still seems to drop when he gets ill, but at least his body is able to recover. This does indicate that maybe the slight paleness and lack of energy that I was worrying about a few weeks back may have been real, not imagined, but I am not going to stress that. The rest of his numbers were just fine. We are going back in January (we decided that seeing as the baby is due in early Feb, it would be good to have a mid Jan appt instead of waiting until mid Feb. I am sure Josh will appreciate this.

Sorry for the wordy post. I shouldn't blog when tired. But if I didn't, I would never blog.

Here are the numbers.
WBC: 4.6
PLT: 144
HCT: 34.9
HGB: 13.2
ANC: 2020

Oh yes, and the picture? When we got home, he wanted to play Spy, so he got in disguise, including wearing his new to him ski helmet and goggles (we can not wait to get the kids on skis this winter) which he has barely taken off since we got them on Saturday. Love the blond curls.

Chef Max

I think my last post was a bit heavy, so here is a more lighthearted one. :)

Max went shopping with me today, and while we were out, decided that he would cook dinner, and picked out hot dogs, tater tots, and peas. While this is not our normal dinner, I had to admit that the occasional tater tot is pretty darn good, and at least he picked out the good hot dogs so I went with it. When we got home, he had me make him a chefs hat, and went to work. With a little assistance from Mom and Dad because the stove and oven were involved, he put together and cooked the meal. After it was done, he carefully cut up Lauren's hot dog, plated all the meals, giving Josh about four servings of tater tots (I usually make a bag last two meals, but this was his party), and served everyone. It was really fun to watch, and he was very pleased with himself. Plus, there was no begging him to eat at all. What a wonderful evening.

Brief Update and Rambling Thoughts

I realize that it has been two months since I have updated Max's blog. Life has been so normal, for the most part, that sometimes I have a hard time coming up with something to write. He is happy in school and has been doing some enrichment classes and loving them. I miss him when he is gone, but also have to admit I like my kid free time. He is growing and making new friends and it is so nice to see him get to do all the stuff the other kids around us are doing. He and Lauren are best buddies and worst enemies often within minutes of each other, but they are more buddies than enemies and she misses him something fierce when he is gone, often asking if we can go get him. They spent so much time together only having each other that I think it has formed a special bond, one that hopefully will last a lifetime. He is eagerly antipating the arrival of his baby brother in February, and loves to talk to the baby and feel the baby move. It is so neat to see him interact with my belly. Lauren likes to kiss my belly, but Max really gets it, and can't wait for him to arrive. We will see if he is as excited when this new life arrives at home and gets a lot of attention. He has been struggling with sharing things with Lauren (but not other children) and gets really distraught if she gets a present that he doesn't get, often talking her out of her new toy so that he can play with it, which I think bothers me more than Lauren, but hopefully he will outgrow that. Sometimes it is very tempting to just get two of everything to avoid the issue but he needs to learn that all gifts are not for him.

We had a small scare a few weeks ago with him. His docs wanted him to get the flu shot, but because of his egg allergy, we had to meet with the allergist, whom we hadn't seen since before Max got sick. We were supposed to take him for a food challenge right around the time that he was hospitalized for treatment, but it obviously got pushed off, and Max had told me he didn't care if he never ate eggs, that he didn't want to do the test, so I had pushed it off. I figured it wasn't worth making him miserable over at this time. But, the flu shot made it an issue, so off we went. First of all, much to my great disapointment, he had a definite reaction to the egg test. But, the doctor also heard some wheezing and his pulse ox was low. He had had a cold the week before and still had a lingering cough, so I figured the wheezing was just from that (actually, I hadn't heard any wheezing, to be honest, but when the doctor said he heard it, I figured no big deal). However, the doctor was very concerned that this was the beginning of asthma. We have a family history of asthma, which might be why he jumped to this immediately. I had a hard time dealing with this, for some reason, and was really upset that he put him on albuterol right away. After 7 months of steriodal treatment, the last thing in the world I wanted was to give him another sterioidal drug, partially because of what it does to his moods, and partially because the drugs just are not good for the body. After four days of roid rage tantrums (I couldn't believe how fast it affected him), we saw the pediatrician who said everything was normal and not to worry about it, that it was likely just an upper respiratory illness and no big deal. We do have to follow up with the allergist a couple of times, but hopefully this will have been a non issue. It did give me just one more thing to worry about.

While the worry I feel has greatly diminished, it is still in the back of my mind at all times. I try to ignore it but sometimes it comes out. I have gotten to the point where I can give him a bath without overanalyzing every single bruise on his body (I think he is really sick of me asking "where did that come from" or "did you bang yourself here?"), but if he decides he needs a rest on the playground and the rest of the kids are still running, fear strikes my heart, even if he has been going none stop for five days. A red mark on his body makes me call to Josh to come and inspect it, and every time we get close to the next doctor's visit, I get more and more anxious. I actually look forward to his next appointment because I just don't like not knowing. I also worry about health insurance. Josh changed jobs a few months ago and because of a communication glitch, we thought his insurance got dropped and I was in a real panic. As it turned out, he wasn't dropped (though they did drop the life insurance, which I think we are still trying to work out), but I worry that if Max is ever one day without health insurance, he will never be able to get it again.

One last note for those who are wondering. Yes, we are going to bank this baby's cord blood. There is apparently something available for families in our situation where a new baby's cord blood could be life saving for an older child that will reduce the expense of banking, and Dr. Ebb is suppose to have that information for us at the next appointment (though he is a very busy man and I realize he may have forgotten, but we have a few months to figure this out.)

That is it for my ramblings. I guess it wasn't that short an update. :)

School

Sometimes it is hard for me to keep up with blogs, especially having two. I often have trouble these days deciding between posting here or at the family blog. I wrote about the kids' first day of school on the family blog, because Max and Lauren started together, and Max wasn't exactly great about letting me take pictures. So, if anyone is interested, click here to read about their first day.

Max seems to be really loving school. As many people know, we really agonized about what to do this year. He loved preschool last year and did well, but they recommended we have him do another year of preschool rather than move him into kindergarten, mainly for social reasons. He was still having difficulty waiting his turn to speak and listening and following directions in groups. For someone who was the center of attention for so long, this wasn't that surprising, and he definitely has difficulty waiting patiently for one of us to finish a conversation or talk on the phone when he wants us. However, he has been working to teach himself to read and has a real interest in math and science stuff and I worried that another year of preschool would bore him. We decided to send him to a private kindergarten this year because the ratio there is 13 students to 2 teachers, similar to last year, but the curriculum will be more advanced. Maybe this won't help him survive in the big public school next year, but hopefully it will work out. They do have a pre-first option at the public school, so if he isnt' ready for first grade, we have that option, too. However, he seems to be doing really well. I haven't had a chance to ask the teachers about how he is listening, but he is definitely absorbing like a sponge. The first evening, he called me into his room to show me "how we hold a pencil in my new school" and was holding his pencil perfectly, no more just grasping it. I have been encouraging him to do this off and on for months. He had his first Spanish class on the third day and greeted me with "Hola" and when we got home said "Gracias for picking me up, Mommy" which was both cool about the Spanish and nice to be thanked. :) Today, he was playing a game and I heard him counting in Spanish even though the game was in English. Late last week, after a week of school, he brought home a worksheet. They had been working on the letters in their names. (Well, I assume all the kids were not working on M, A, and X, though A was the letter of the week and M is the letter next week.) His sheet contained Ms, A, Xs and Ts. They were all neatly written. And, his X's looked like X's, not T's. I assume they had him doing both for comparison. This is another thing I have tried to get him to work on, though again, without pushing. I have been trying to get him to make X's that didn't look like Ts. This weekend, he was writing a book about Wall-E and had written the title out - WALL-E. His W, A and Ls were beautiful. His E still looks like it used to, but I was still amazed. This was not on line paper, either. It was just free form. I know this is a little thing, but it just showed me that this is working for him. And most importantly, he really seems to be enjoying it.

I have thought a lot about homeschooling. I did some when Max was not able to go to school, though how much "schooling" does a 3 and 4 YO really need, but I was prepared to do it as long as I needed to, and I have considered, if the school system in our town really doesn't work for him, homeschooling later on, though it would pain me to pay so much in taxes and not utilize the public schools (well, I guess we are doing that now). However, watching him absorb so much so quickly when I was unable to come up with a pleasant way to get those things across all summer makes me question whether I would be able to be effective. I suppose if I took it seriously, I would, or at least I hope I would. I know a lot of unschoolers as compared to homeschoolers would scoff at the idea that knowing the "right" way to hold a pencil or making neat letters even matters, especially at this age, but obviously it mattered to me, or I wouldn't have cared that much. Every time Max signed his name to something, I knew that the X wasn't a T but as his written language expands, it will be helpful to tell the difference. Anyway, it just got me thinking.

Being Creative is Such Hard Work

I have posted before that Max likes to create books. Sometimes, he makes up stories (like The Two Lobsters, still my favorite), and sometimes he just paraphrases movies that he has seen (Tonight it was Wall-E), but he will illustrate them and tells us what he wants them to say and we write the words. Then, I bind them with a hole punch and yarn. This evening, he was working on a long one and sent me away to finish his illustrations, but was very clear that he wanted the story "stringed" when he got up. However, it didn't get finished. When I went in to check on him, this is what I found. The book will have to wait for another day.

CBC - 09/02/2008

I can't believe the summer is "over" already and we only had to go to MGH once. Max had his two month checkup today. We drove in with friends from North Carolina who were visiting with plans to go to the Museum of Science beforehand, but got a late start, so dropped them off with Lauren (they are on my favorite friends list for taking her) and headed over. It was really backed up today. I should have known better than to go the day after a holiday weekend, but I don't think that sunk in when I booked it. Anyway, we waited for close to two hours before we got to see Dr. Ebb today, and the blood draw was after we were done with him, so we left right after they finished the draw. Dr. Ebb said he looked great and we booked an appt for early November. Then, we took the T to the Museum stop, met our friends (Mike had Lauren on his back and really appreciated why we wear her now), took the T back to North Station, and went to the North End for pastry at Maria's. Then we grabbed some pizza for me and Max as we hadn't eaten lunch yet (it was around 4:30 by this point), took the T back to the hospital, send our friends off to the airport, and drove home. Phew, what a day. The kids really enjoyed it. I guess Lauren had a blast at the MOS. Max had fun at the hospital as usual. He didn't seem to mind the wait at all.

I got a call from Dr. Ebb around 6:30 with the counts. They did a retic count but he didn't have them yet. Here is what he gave me. (I miss my printout. What will I file? ;) )

WBC: 5.8
PLT: 178
HGB: 13.1
HCT: 35.4
ANC: 1890

I think these are down a bit from last month (I suppose I could just check the blog) but they are in the normal range so all is good.

This evening, I went to the parent orientation/meet the teachers thing at Max's school. He starts kindergarten tomorrow. I got a bit teary eyed when I realized this was the third orientation in three years that I have attended, but the first one where I know for sure that he will get to start school. The first time, he wasn't expected to start (then ended up going the first week before his counts totally tanked and he got pulled out for the rest of the year). Last year, it took until Jan to start. Baring any unforseen illness tonight, he will be starting school tomorrow. That makes me smile.

Max the Rocker

We have posted before about Max's love of music. He likes to play it, to sing, to listen to it, and to dance to it. He is pretty picky about the music we listen to in the car, preferring "loud music" or "cool music" which often means heavy metal much to my great dismay (but to Josh's joy). However, he also has days when he wants to listen to jazz, classical, classic rock, etc. He just really likes music. He also loves to dance and has always proudly displayed "my new move" to us when trying out new dance moves. We honestly have no idea where he gets most of it, but he is pretty creative.

A couple of weeks ago, he was dancing and Josh caught him on videotape. It was too funny not to share.

Chef Max

Max has been cooking with me for a long time. When he was sick, we did a lot of cooking together just to pass the time. Recently, he has taken to cooking random things that he makes up. I have been encouraging him to follow recipes or at least try what he makes as we are a bit tired of eating salt and maple syrup pasta soup. He has been better about it. When he turned 5 a couple of weeks ago, we told him he was going to have a few chores to do every day (he helps out aruond the house, but we were going to make it more formal) and suggested setting the table. He told us he wanted to be the cook instead. Oh boy. We are still working on this one, but today, he decided to make Lauren a "funny side down egg" and actually did a pretty good job at it. Too bad Lauren wasn't hungry at the time, but it was a nice thought.

2 Years

Can you believe it has been two years since we found out Max was sick. 2 Years ago, yesterday. Things have definitely started to normalize as I barely even thought about the anniversary. It is a bit sad that it will forever be linked with Max's birthday. If that wasn't the case, it is possible that I would have missed it all together. But, I suspect I will always look at 2 days after his birthday with a bit of sadness and trepidation.

2 years. It feels like just yesterday and yet it feels like a lifetime ago. So much has happened. Max has grown so much. He isn't a toddler anymore. He is a boy. A fun, funny, frustrating at time, interesting boy who gets much joy out of life and is, for the most part, really nice to be around. We are so lucky. I almost never forget how lucky we are.

Max's birthday was pretty much a non event this year. I worked last week and was just too tired to do much. We made such a big deal out of last years. What a difference. I am sure Max wishes it had been a bigger deal, but it was nice for it to be mellow. We tried not to overdo for him. He still sees the FedEx or UPS truck and assumes it has something for him. Every package must be for him, and he often expresses his deep displeasure when it contains items for other people. I remember asking someone how you got through something like this without ending up with a very spoiled child and she told me to worry about it later. I guess we have actually done pretty well, considering. He is pretty good about sharing and is polite to most people (the big exception often being me and Josh, but I guess that is fairly normal). He is a good kid.

2 Years and the only signs now are a couple of scars from his port, four from bone marrow biopsies that probably only I notice, and a child who insists on wearing the ankle "bracelet" from the hospital. Oh, and two kids who are amazingly comfortable around medical personnel. We are so lucky.

CBC - 07/07/2008

Can you believe it has been two months. Amazingly enough, I didn't even worry over these two months. Max has looked and seemed so good, that I have been pretty relaxed. I have seen no petikia, he barely has a bruise on him, and he has been running all over the place, and he has had great color and energy. Today, a friend took Lauren so that Max and I could go in on our own. We had a lovely day. We took the train in, then walked up to the North End for pizza and pastry. Max decided on gelato instead, which he enjoyed in the heat by the fountains. It was a hot day, but it bothered me more than him. Then we walked up to the aquarium to see the seals. We took the T over to the hospital because he was tired of walking by then. It meant three trains. He was thrilled.

Dr. Ebb took one look at the lab results and was thrilled. His platelets were down a bit from last time, but still close to 200, and his white count and hematocrit were at all time highs. He looked him over and confirmed what I had been seeing, that he looks great. The only issue we had was that Max didn't want to leave the hospital. He wanted to play more. He played Ant in the Pants while I checked us out and made an appt for early September. Then, we took the T to the train and headed home. A very tired boy fell asleep on the train. A very tired mom did not, but was happy to see him napping.

Here are the numbers.

WBC: 7.8
HCT: 37.5
HGB: 13.7
PLT: 198

Oh, I don't have the ANC yet. Our appointment went so quickly that they were not in by the time we were done. Dr. Ebb said he would call me with them some time today. I will update when I get them.

Couldn't Resist

I just couldn't resist posting this picture of Max that Josh took. He is no little boy anymore. I have mixed feelings about this, though mostly good ones. He may drive me nuts a lot of the time, but mostly he just makes me smile.

Boston with Dad

Max loves the Backyardigans. He has loved them since we first discovered them, and close friends sent him a DVD player and four Backyardigans DVDs for when he was hospitalized and we have been hooked since. His favorite is Austin, but he really enjoys them all. He was visiting a friend a while back and saw an ad for The Backyardigans Live and really wanted to go. At first, I was really unsure about this as he really doesn't like big characters (remember the hiding from Elmo at Beaches) but when I researched it, I realized that they were just people in costumes with makeup, no big heads. We got two tickets and he said he wanted to go with daddy, so that morning, he got up, dressed himself in his "dress up sweater" and got in the car, around 7:30AM. He was ready to go. Unfortunately, the train left at 11. We eventually talked him back into the house, but he was really excited.

They took the train into North Station, then walked to the North End and went to Max's favorite place for a slice of pizza, then walked back and took the T to the show. Max really enjoyed it, until it started. Then he hid. :( When asked about it later, he said the people were too loud and that he didn't like Pablo's shoes. I guess Pablo kept running across the stage yelling about his shoes. At intermission, he had had enough and was ready to go. Josh called me to ask what to do, and I told him go get pastries and head home. No sense in making him stay when he wasn't enjoying it. I knew there was the possibility that he would be unhappy. It was worth a try.

They took the T back to the North End and went to Maria's for pastry, and then Max played in the new fountains that they have put in there. They have finally finished the construction and it really is lovely. I didn't figure out until I saw the pictures but apparently Max rode the train home soaking wet. Note to self - send spare clothes the next time they go into the city together. I always carry it, but hadn't thought to send it that day. They had to run to catch the train, but made it in time and came home in time for dinner. Max had a great time which was all that really mattered. It will be a while before we try another show, mostly because it was a lot of money to spend on something they only saw half of, but the trip to the city was definitely worth it.

Normal Life

I have been a bad blogger. I can't believe I haven't posted in almost two months. There just has not been that much of note going on. Life feels so normal. I even managed to make it past the month mark without worrying about how Max was doing. It has been really nice.

Max finished up at The Red Balloon in early June. It was sad to say goodbye, and will be nice when Lauren starts there in two years. It has been very hard to decide what to do for Max's school next year, but I think we have made a good decision. He will start kindergarten at a local private school in September. The classroom will be small and a neighbor's daughter will be there, so we can carpool and he will know at least one kid in his class, not that getting to know other kids has ever been a problem for him. We really haven't planned much for the summer. Instead, we have left things pretty open so that we can play it by ear. We have made many park/playground trips as well as a trip to the museum of science, the aquarium, and to grandma and grampa Richard's at Sebec Lake. Our weekends are so heavily planned already that we don't really have any free weekends until August. I have no idea how that happened.

I got Max a butterfly kit with caterpillars and we really enjoyed watching them grow. I was worried about how he would deal with them dying, but he was really pragmatic about it. He had us put them on the ground "so the bug can eat them and turn them back into dirt" which is what we did. We did release a couple of them after the first two died (they only live a couple of weeks) and got to witness one getting eaten by a bird. Got to love circle of life lessons. ;) Max found a baby turtle in the yard and helped his dad move it closer to the water (it was way up in the middle of the yard). He built it a little nest and was very careful with it.

Max has helped me do some gardening this summer, which has been nice. This is the first year where he has really been helpful rather than the opposite. Lauren, on the other hand, has more than made up for Max's helpfulness. But, Josh built a kids garden for us and I have been letting her do whatever in there. Hopefully next year, they will both be able to help out.

We are looking forward to a trip to Damariscotta for the 4th and then the next Monday, we head to MGH for a checkup and CBC. I can't believe it will have been two months.

Max's Thoughts

While Max was sick, he never really talked much about what was going on with him. I have always just assumed that he just figured that when you turned 3, you start getting lots of blood tests and eventually have surgery and get lots of meds and transfusion etc. He has never questioned it. However, he has started talking about his thoughts in the last few weeks. The other day, he talked to me about how he thought we were taking his blood to give to other kids who needed it, which I wrote about already. Tonight, he asked me a lot of questions about his surgical experiences and also about when he got a CAT scan. We were reading Curious George Goes to the Hospital, which he choose from the Bookmobile on Thursday. That really is a pretty great book for kids going to the hospital, even if it is pretty outdated. All the kids (and George) stay in one big room with nurses and their caregivers leave them for the night. I can not imagine what it would have been like having to leave Max every night when he was hospitalized. Anyway, we talked about xrays and he asked about his. I realized just how many he has had. I mentioned the CAT scan, which is one of the really traumatic things he has experienced. He was terrified of it. He never brought it up after that one day, though. However, he described it and what his thoughts were about the different parts of it. It was interesting to hear what it was like for him. He also talked about blowing up the balloon before surgery. For his first of the three OR surgeries, the had him blow up a balloon that had medicine in it to make him sleepy. He really hated it. I still do not know why, but he talked about it a lot tonight. We have been lucky, and the anethesiologists have been willing to not use the balloon after that one time. He told me it tasted like candy. I asked what he didn't like about it and he would not say. But, then he got kind of small and scared looking and told me that the next time he had surgery, he wanted me to tell the doctors that he only wanted to practice blowing the balloon up, not blow it up with the candy tasting stuff. I told him that I hoped there would not be a next surgery, but he didn't want to hear that. So I told him that I would tell them. He gave me a hug and seemed to feel better.

I wonder if we will get more of this over the next few months, and I wonder why it is coming out now. I am glad that he feels like he can talk to me about these things.

Anniversary Great News: CBC - 05/02/2008

Well, after a week of stressing, and two weeks of having a sick Max, we had Max's blood draw today and the results were great. I was my typical stress case, but when Dr. Ebb looked at Max's shins and also after they took the needle out and he didn't bleed at all, I felt a lot better, so I was not all that surprised that his platelet count was good. But the counts were all as good or better than I could have hoped for.

We started the morning helping out watching a friend's daughter, and my friend was kind enough to offer to watch Lauren in the afternoon. I was planning on going to the Museum of Science in the morning, but that would have meant dragging all three to the hospital afterwards, so we skipped that. Instead, after Max's appointment, he and I took the T to the North End for a slice of pizza and then Maria's Pastries. A very sweet person sent us a gift certificate to Maria's, and we took advantage of it. Max hadn't ridden the T before, and it was a great adventure for him, though a bit stressful for me, as I still haven't mastered it, and it is hard enough for me to read signs, think and get to the right trains without keeping track of Max, but it was fun anyway. The North End was packed with new Northeastern grads, so it was full of life. Max enjoyed his pizza and cannolli. Then we headed back. We ended the evening with a trip to Max's favorite restaurant for sushi. Now, hopefully, he will be as tired as I am and go to bed.

We don't have to go back for two months. I can't believe how great that feels.

The counts:
WBC: 7.5
HCT: 36.4
HGB: 13.2
PLT: 224
ANC: >2800

One More Week

Well, technically, only 4 more days, but we won't know anything for another week. On the 30th, we will celebrate one year of Max being off the cyclosporene. This will be a really big deal. If he doesnt' relapse within a year, I guess that his chance of relapse is much lower. (I know, I keep saying this.) I can't believe how much I am concentrating on this date. How much I worry about it. I will feel so much better on Friday after he has had his blood test. This is going to be a long, long week. I was starting to worry about it as early as last Monday. I was considering calling to see if they could get us in on Monday instead, but then the kids both got sick, and Max even got a fever, and not only do I not like to take sick kids into a place with a bunch of kids on chemo with shot immune systems, but I would rather his body has a little more time to recover, so I left it for Friday. I can tell I am already worrying, though. It isn't a conscious thing, more of a feeling of low grade, in the back of my mind stress. I am sure it will be fine, but it doesn't make it easier. Friday can not come too soon for me.

That's What He Thought?

Last night, there was a mosquito in Max's room (the first of many, I am afraid). Max was pretty concerned about it, because he didn't want it "eating my blood" so I killed it before tucking him in. This led to him asking why mosquitoes and ticks "eat people's blood" (I really didn't have a good answer for this), what they drank, why they had the same thing for breakfast, lunch, dinner, snack, and dessert, and other lovely nighttime conversations. Then, he asked me why sometimes he gave his blood to other kids and why sometimes other kids gave their blood to him. It took me a minute for this to sink in. All this time, he has thought that when they did blood draws, we were taking his blood away to give it to other kids. I explained to him that the blood was put under a microscope and looked at to make sure it was healthy, and so that the doctors could count to make sure he had enough of the different kind of blood for him to be safe and healthy. I told him that daddy and I did sometimes go and donate our blood, but that we are bigger and have more blood and we do it by our own choice. That people can decide to donate their blood to help people who need blood because their body isn't working right or because they were in an accident or something happened where they needed extra blood. I told him that if he ever wanted to give his blood for other people to use, that he would need to be bigger to do that, and that we would never, ever do it without his permission. He seemed happy with this answer.

I never had a clue that he felt this way. I wonder what else he thinks that I haven't discovered yet.

How Things Change

I ran into someone from Miss Ellen's class and Playgroup today. I used to see her regularly before Max got sick. Her daughter is a bit younger than Max. She is an oncology nurse at Children's Boston. When I first heard what she did, I thought that it sounded like a terribly depressing place to work. I couldn't imagine doing it. But, now that I have spent so much time in a pedi hem/onc department, I realize that it really is the opposite. Yes, children die, and that is awful and I still do not know that I could deal with that over the long term, but, at least at MGH (and she said the same about Children's), it is an amazingly upbeat place. Kids who are obviously very ill often seem so strong and upbeat. The doctors and nurses are wonderful, but it is really the kids that amaze me and so often make me smile there. Kids just amaze me.

CBC - 03/28/2008

Another month has passed already, if you can believe it. It snowed this morning, much to my great dismay, but we managed to drive in and spent a short time at the Museum of Science before Max's apppointment today. All three of us really enjoy it. I wish we had had more time.

Max's white count was down a bit, but Dr. Ebb is pretty sure it is just the result of a virus that he had a couple of weeks ago. He had some atypical lymphocytes, which Dr. Ebb pointed out to me, therebye freaking me out, but in hindsight, I am pretty sure he was showing them to me to show me that his body was just fighting something and that his bone marrow is working right. Poor Dr. Ebb. He spent a fairly large amount of time trying to convince me that everything is fine and there is nothing to worry about. He is right, though, I am sure. I would have given anything for results like these 6 months ago. It is funny how your "needs" change so quickly.

Max and Lauren had a lovely time at the hospital, and there was a volunteer named Lauren who played with our Lauren during Max's exam. So, she didn't have a chance to demand a full physical today. :)

Here are the numbers. We go back the first week in May. Then, if those numbers are good, we start going every two months.

WBC: 4.3
HCT: 35.2
HGB: 12.8
PLT: 166
ANC: 1510

Just because Dr. Ebb pointed them out, Atyps: 3

I don't think I had really focussed on just how good the HCT and HGB were. Those are really good numbers. :)

Max's First Book

Max decided he wanted to write a book this evening. He even knew what it would be called: The Two Lobsters. He asked Josh to get some paper, had me getting him some markers, and sat down with Josh and dictated it to him. He had Josh draw the first picture, but then, after some encouragement, illustrated the rest himself (though he did have me add a picture after the fact. Just for the record, Josh draws a much better lobster than I do.). After we were done, I bound the book for him using his hole punch (thanks, Miss Ellen) and some string. He wants to take it to school and put it in the bookcase for all the kids to read.

Here is the story.
One lobster was all alone and it had no friends to play with.
Then, one lobster scurried by. The first lobster who was all alone saw the other lobster scurry by.

(Max has requested that I include the picture that I drew, even though there is no text to go along with it. So, per his request, it is in here. I was supposed to draw a big lobster and a little one. After I drew the second one, he said "Well, that's more medium, but it is okay.")


Then, the two lobsters married and then they came together forever.

CBC-02/29/2008

Max had his monthly CBC today. The results were wonderful. Dr. Ebb even seemed surprised by them. (Oh, and I did confirm that last month, he chased us down to give us the good news.) His platelets were just shy of 198. All his counts were great. I checked on last months' retic count, too, and it was 1.7. He didn't ask for one this month as things have been so good. We have two more months of monthly tests and then should be able to move to bimonthly, which I am sure both Max and I will prefer.

Max did great with the blood draw. He told me he didn't think we should get a blood draw but should do something else instead this morning, and expressed some displeasure when I put the Emla on (he said it hurt, and I know that it did not), and he told me he was scared when she did the draw, but he sat still and didn't even cry. As soon as it was over, he went back to playing. Lauren came in with us and she was her usually silly self. IT was a nice visit.

I really struggled this week. I keep wondering when I will stop worrying so much. The closer to the draw we get, the more I worry, I think. It took me a few days to figure out what was bothering me, because it is really subconcious, but the worry is definitely there. I was not very pleasant to be around today. We didn't even do anything before the appointment because I just wasn't up to it. I hope that I will be able to learn to stop worrying. It is exhausting.

Anyway, here is the wonderful news:

WBC: 8.9
HCT: 36.6
HGB: 13.5
PLT: 198 (With a happy note on the lab sheet saying New normal range :) )
ANC: >4500

Mom's Need to Talk in Specifics

We got yet another snowstorm on Friday. It snowed all day, and we woke to a winter wonderland. Josh was outside, and Max wanted to join him. I told him he needed to put on pants, shoes, a hat, and a jacket before he could go outside, and went back to working, only half paying attention as he headed out into the backyard. I glanced out to see him wearing this. I am pretty sure that Cisco thought he was nuts, too.

And yes, after I took the picture, I went inside to get him a pair of boots, though I couldn't talk him into a warmer jacket or hat. It didn't take him long to figure out that Crocs are not snow walking shoes.

Aquarium Adventure

We went to the New England Aquarium today. I have wanted to go there with Max since before we moved back here. As a girl, some of my fondest memories are of walking down to the aquarium with my father and brother and watching the seals play. When we were really lucky, Dad would let us go in and see the big tank and the rest of the aquarium. This started my love of the ocean and its creatures, and I have dreamed of sharing it with Max since pretty much he was conceived. Josh, Greg (my brother) and I visited the Baltimore aquarium when Max was around 9 months old, and he had fun, but he doesn't remember that. Somehow, we never managed to get to the Monterey aquarium with our kids, even though we went many times before they arrived in our lives.

Max loved it. Josh took the day off specifically so that we could make this visit and having him along allowed Max to go see what he wanted to see while Lauren and I hung back at times. He was fascinated by the big tank and the fish in it, thought that the penguins were really fun to watch, and loved the jellyfish exhibit. He took some time to build a structure out of plastic fish and learned about red belly turtles. He was cautious at the tide pool, as compared to his sister, who leaps before she thinks and was thrilled to be able to stick her hand into the water (in her defense, she did wait until I touched the sea star before she touched it). But, the thing he liked the best was watching the seals. Just like his mom. :) I promised him we would visit them again often, as I am slowly getting my bearings in Boston and am starting to figure out how easy it is to walk (and or take the T) from one thing to another like we did when I was a child. Now, we just need spring to arrive.

On our way out, I realized we were driving by the North End, so we turned onto Hanover Street and amazingly enough found parking and stopped to have a slice of pizza ("Mom, thanks for chosing a perfect lunch place") and then headed to Maria's, our favorite pastry place, for cannolli. It was a wonderful day. I know we won't be able to do this too often as an entire family, but I hope to get to do it again sometime fairly soon.

We head back into Boston in two weeks for Max's next blood draw (Dr. Ebb is on vacation next week) and I hope to take the kids to the Museum of Science beforehand again. I think we all are enjoying being able to get out and do things this year. It has been good for all of us.

A Busy Day, A Happy Day

We just got home from a very busy day. Max had his monthly appointment. It was actually supposed to be last week, but I had double booked him for an appointment with Dr. Ebb and also with his pediatrician, and believe it or not, it is harder to get an appointment with his pediatrician, so I changed the Clinic visit. This is a pretty big deal for me as usually I am very anxious for his blood test. I have to admit that I got anxious coming up to this day, especially because he has a cold, but it was a great appointment. We started the day with a trip to the Museum of Science. I had these grand plans of parking at MGH and walking over to the Museum, but it was bitterly cold, so we just drove to both. It was a great combination. The kids love the museum and so do I. It is so nice to be able to go there. We managed to time it really well, too. Dr. Ebb said Max looked great, despite his cold. He said that in a couple more months, we can move to every two months. We left right after the blood draw, which Max tolerated much better than last month. He didn't exactly jump with joy, but he didn't kick and scream this time. I think a few more times and he will be accustomed to the draw in his arm again. We went to the caf to buy pizza on our way out the door and as we were getting into the elevator, Dr. Ebb ran up and handed me the results. I am pretty sure he came to find us before we left as that was all he had in his hands. The results were better than I could have ever imagined. I actually expected to see a dip because of the cold, but his platelets were 176, a number I never expected to see. All of his counts were in the normal range. I am so happy.

WBC: 7.9
HCT:35.5
HGB:13.1
PLT: 176
ANC: 4100

They ran a retic count, but I don't have the results for that yet. It is possible that Dr. Ebb will call me with that tonight, but I didnt' specifically ask him to, so I am not going to expect it.

We go back at the end of Feb. I am going to try to combine the museum and hospital again. I am really worn out, but it was fun, plus it was nice for it to be something other than just a trip to get a blood draw. It made it something to look forward to.

Max's First Day of School

Or maybe I should say Max's 5th day of school. For me, this was a huge deal. He finally got to go back to school after all this time. For Max, it was more of a "well, it's about time" thing. I forgot the camera, so I couldn't get a picture, but honestly, there would have been nothing to take except for a picture of his back and he trotted off to the classroom. It was like he had never left. As we were driving in, he asked if I had remembered his lunch box. I told him that I hadn't signed him up for Lunch Bunch yet because I wanted him to have some time to get used to going. He told me he had already done that. The only bad point was when we were heading home. He told me that he hadn't done everything that he wanted to do yet. I tried to convince him that he was going back tomorrow, but I think he doesn't quite believe me. His teacher said that he had a great first day.

The weather is beautiful today, sunny and in the high 50s. They played outside a lot more than they normally would. I like that The Red Balloon is flexible like that. While he was there, Lauren and I met a friend and her younger daughter for coffee (her older daughter was also at preschool). It all felt so normal. I probably should have gotten so work done instead, but it was a really nice break.

I thought I would have issues with him being gone, but I think this is going to be a very good thing. We still have two days a week to go to the museum etc. It seems like a great balance.

I still can't believe he finally gets to go back.

Max and Mom's Special Day Out

Today, we did something that I have wanted to do for a very long time. Max and I took the train into Boston. He has been asking to ride the train for quite a while, especially whenever I have gone off to ride it without him. For the longest time, we just were not going to risk having him on the train. The last couple of months, I felt comfortable having him ride it, but I don't think I could handle being alone on the train with him and Lauren (or, for that matter, with just Lauren), so we haven't done it. However, our favorite sitter is home for vacation, so she watched Lauren for us. Grandma was coming into the city (Grampa Rich stayed home sick :( ) so we took the train in and met her. Then we walked through frigid Boston (it was in the single digits and the wind had it well below zero) to the North End and went out for lunch. Max had pizza, I had pasta, and Grandma had a lovely sandwich. After lunch, we made our way to Maria's for dessert. We love Marias. Max got to pick out a couple of cookies, just like I remember doing as a child. I used to love the green and pink and yellow cookies in the Italian shops. Max enjoyed them as much as I did. He also insisted that he bring some home for Lauren. Grandma and I had espresso and canolli. We walked rapidly back to the train station (into the wind this time. Even Grandma stopped trying to tell us it wasn't really all that cold.), and rode the train home. Max had a lovely time and said he would like to go again, next time with Grampa Richard. He also said he missed Lauren, but was "glad we didn't bring her because she would have gotten into a lot of trouble on this train." Smart boy, our Max.

Happy Holidays

What a lovely time of year this has been for us this year. The kids are loving the snow, especially Max, Christmas meant that Grandma and Grampa Rich and Uncle Greg and his friend Jenni came to visit. Max loves Uncle Greg and Grampa Rich. Grandma rates, too, but not as highly as those two. Poor Grandma. Max was really into Santa this year and lights and the tree and of course presents. He was so excited about the presents under the tree that he could barely contain himself Christmas morning. When the dust settled, what were the favorite gifts? A cool parachute toy from Aunt Kristin, and a box of Spiderman Bandaids that Santa left in his stocking. They are much more fun than the ones that Mom buys. He is also pretty fond of the Firefighter Rainjacket that he can wear with his Firehat that he got at the hospital the last time we were there.

It was such a relaxing holiday period this year and we are looking forward to a healthy and happy 2008. Max starts school on the 8th. He can't wait. He got a new backpack and lunch box for the occasion. I am a bit nervous, but I am sure I will get over it. Another new phase in our lives.

Happy New Year everyone.