WBC - 12/19/07

We went to MGH for the monthly blood draw and exam. Max and Lauren were in good humor, and Lauren charmed the heck out of the place while Max got her exam (yes, she did once again demand an exam, too. I think she would have tried to get the nurse to do a blood draw if the volunteer hadn't taken her for a walk then.) Dr. Ebb said Max looked great. He is getting tall, 43 inches or so now. He was not at all cooperative for the exam, though. I am not sure why, but I hope this is not a sign of things to come. He just wanted to cling to me and not let Dr. Ebb look at anything. He was giggling while he was doing it, but he was definitely being stubborn. He also was really, really unhappy about the blood draw. He said it was scary to have it done in his arm and he cried during it, but he stayed still, which is the most important thing. I tried to tell him that he did very well, but he said that no, he didn't, because he cried. We will have to work on this. It is okay if he cries as long as he lets it happen.

His counts were very good. The WBC was a bit lower than I like, but the rest were great. Got to love that red count. They did a retic count today (baby red cells) and it was a number that you would expect to see for a person whose count is where Max's is. I am pleased. We go back in a month.

Oh, bonus, the music therapist was there, and Max got to play with her a bit. She is just wonderful. And, the kids got fireman hats. Who could ask for more. :)

WBC: 5.0
HCT: 37.5
HGB: 13.6
PLT: 139
ANC: 3380 (9 monos)
Retic count: 1.6

A Boy and His Dog

Max has recovered beautifully from surgery. He had some discomfort the first couple of days, but a little Tylenol seemed to take care of that. They gave us a prescription for Tylenol with Codiene but we didn't even end up filling it. He has been running around like crazy the last handful of days, helping cut down a Christmas tree (see our family blog for pictures), putting the ornaments up, building a snowman in our first real snowstorm, and visiting a local museum. He rarely naps anymore, but occasionally, he will take one, and yesterday, after the museum, he went down for the count. He slept through me bringing him inside and moving him to the chair, and didn't even notice when Cisco snuck up next to him. I let them both stay up there, even though Cisco isn't supposed to be up there (and he knows it. Just look at that face).

The Port is Out

Today, Max had his port removed. What a wonderful day. The doctor feels confident enough that Max won't need more transfusions any times soon. It really feels like the end of a very, very long year. Even Max was happy about it. When we walked in to the recovery area, Max's first words to us were "Mommy and Daddy! It's gone!" I have been trying not to make a big deal about the surgery, because I know he doesn't like anesthesia, but I did want to prepare him to have it taken out, because he had grown rather fond of it. I am glad that I did that. Plus, when the head nurse asked him if he knew what they were doing today, he knew the answer.

Everything went as well as it could have, though we did have a rough start this morning. Josh's alarm didn't' go off and I woke with a migraine. We left the house 45 minutes later than my absolute latest to get there on time time. We were supposed to be at pedi hem/onc at 9 for a blood draw and over to the same day surgical unit by 9:45. We didn't arrive at the hospital until 9:40. So, I send Josh and Max up to pedi hem/onc and I went over to surgery to get the paperwork started. It worked out pretty well. Amazingly enough, surgery was actually running ahead of schedule. They were ready for him to get gowned up before he even got there. I only sat for maybe 5 minutes. Last time, it was a good hour. Everyone was very nice as always, and Max was in great spirit, especially because they allowed him to pick a toy from the treasure box at the clinic. He got a big, stuffed superman, which I think was pretty appropriate for today. We had the same prep nurse as we had last year. What a difference it was from last year, though. First of all, the gown jammies that were huge on him last year were way too small for him. He had bright red cheeks and lips, instead of being so pale. We were all in good spirits. The clinic left his port accessed which was wonderful because they were able to administer the original anesthesia through the port instead of using the mask. Max hates the mask. He was very relieved when he was told he didn't need to use it. They inserted an IV under anesthesia.

Max didn't exactly relax before they put him under, instead preferring to look at everything, and we couldn't get him to lie down, so I held him when they put him under, and gently lay him down after he fell asleep. It was peaceful. Then, Josh and I left the room and I went downstairs and got a flu shot (handy, as I was supposed to get one anyway. Max is still considered at high risk, so the whole family needed to get vaccinated again this year. Of course, I had made sure Josh and Lauren were done, but not myself) and grabbed a bite to eat, while Josh stayed upstairs. It was supposed to be a very short surgery, so we didn't want to go too far, and Max likes Daddy when he wakes from surgery, so Josh stayed. I ran into Reverend Ann when I was going to the cafe, and was able to tell her how much her company and counsel had meant to me when Max was hospitalized. It was so nice to see her again. Then, I went back upstairs just in time to see the surgeon, who said the surgery went very well. Then, we waited about an hour as Max slept off the anesthesia. He was due a nap, anyway. He woke up in good humor, though glad to see Dad. Josh held him for a while as he drank some juice and ate some crackers. He was anxious to go home, so as soon as we could, we got him dressed, put him in a carrier on my back to avoid any falling down (the nurses were amazed that I could carry him like that, and in awe of my lovely Buckle Tie.. note in the picture how happy mommy is and how drowsy Max looks. :)), and headed to the car. He chatted the whole way. Honestly, if you hadn't' know it or noticed the bandaid on his hand, you would never have known that he had anything done today.

We bought Max a special movie (Backyardigans Super Secret Superspy) and let him eat a "pie lunch" when we got home, and he is relaxing on the comfy chair. He says he hurts a little bit, but not enough to complain about it. I think I am whining more about my achy shot arm. He is such an amazing boy.

Oh, the icing on the cake? Max's lab numbers. His WBC was down slightly from last time, but still in a comfortable range, and his platelets were higher than they have been since this whole thing started.

We go back in two weeks for a follow-up. We are going to take it easy the next few days, if I can convince Max to do so, at least. Hopefully, he will heal quickly.

Labs:
WBC: 5.3
HCT: 35.8
HGB: 13.1
PLT: 147
ANC: >1900 (they didn't do the math for me, so I don't know the exact number. There were a bunch of Neuts and some monos. :) )

A Day to Give Thanks

What a lovely Thanksgiving we had this year. It is still so hard not to look back on how things were last year. Last year, we almost didn't get to go to my father's house for Thanksgiving because Max was getting regular transfusions and they were unsure that they wanted him going that far. We were able to go because his didn't need a platelet transfusion until the day before Thanksgiving (this was actually the first sign that things were getting better, I think) but his ANC was scarily low. We had a lovely visit, but were unable to do anything else, and I spent the whole weekend worrying about exposing him to illness. This year was exactly the opposite. Ironically, Lauren caught a cold and we didn't end up travelling in order to not expose my father and stepmother to Lauren's cold. I pulled together a quick meal and we spent the day together. It was so relaxed and lovely. Max looks great and loved spending the time with Josh. The weather was warm and foggy, and we all went to the Cranberry Bogs for a walk. For some reason, Max decided he wanted to ride on Josh's back for a while and he and Josh got to take pictures and look at things and talk together. It was colder today but we had another nice outing. It has been a lovely holiday.

Max's Wish

By the nature of Max's diagnosis (a child with a potentially life threatening disease), Max was a Make a Wish candidate. Back in June, Make a Wish volunteers came out and met with him and asked him to make a wish. He wished for a soccer ball for his daddy. That is what happens when you ask a 3 year old questions like that. :) However, after many attempts, they finally asked him if he wanted to go on a trip anywhere. He replied that he was going on a trip. They asked where. He said to the place with the big pool and the beach where he made sandcastles with Uncle Greg. They asked him when. He said "right after you leave. Mommy is going to take me. We have to take an airplane." It was about 7PM at the time. Again, got to love the mind of a 3YO. However, they marked it as a wish and asked what he was referring to. I told them of our trip last year to the Bahamas and they worked on a wish. They suggested the Beaches resort in Turks and Caicos and we thought that sounded like a great place for him (and yes, for us as well). We left on Nov 1st for 5 days and had the time of our lives. Max was in his element and there really couldn't have been a better place for him. He started his day around 5:30 by getting me up and helping me make coffee. Then, he and I would sit on the deck while he read or played with playdough and I would knit and drink my coffee and we waited for the waterfall to turn on and the day to start. It was very peaceful. Then, we would head off for breakfast (fruit, fruit, pancakes, fruit, bacon and sausage, freshly squeezed OJ, and more fruit), and return to our room to get ready for a day of water fun. Max loved the pools and we visited each of them. He also enjoyed the beach and building sandcastles. It was hard to get him to break for lunch or dinner. By the end of the day, both kids (and parents for that matter) were worn out so we usually went to bed early. He was very sad to leave.

Thank you so much Make a Wish. It was a great experience.

Sibling Stories

I was going to post this on our family blog, but I decided it really makes sense for it to be on Max's, as it is very much related to everything we have gone through as a family in the last year plus.

I went to the hospital with both Lauren and Max yesterday. Lauren needed a hip xray as they have been keeping an eye on her right hip. She was diagnosed with hip dysplasia around 6 weeks old, and had regular ultrasounds for the first six months, but by then, it appeared to be growing normally, so they have never had to do anything with it. We went through a lot of stuff like this with Lauren. Holes in her heart, hypertonic, the hip, diagnosed failure to thrive. Everthing resolved itself on its own. I still remember expecting Max's issues to resolve on their own, too, because things had for her. Oh well. Anyway, Lauren has always been a very good patient, but because of all the time Max has spent in the hospital, he plays a lot of doctor/patient games. He has a real stethascope and thermometer and a lot of play medical stuff. He practices on his stuffed animals, toys, mom and dad, and of course, little sister. Lauren plays along very well, and is a great patient for him. (See this blog entry from our family blog) She also likes to be the doctor. Well, when we went up to Max's appointment yesterday, she knew just what to do. First of all, she was amazing during her x-ray. She just lay quietly and completely still for it. This is pretty good for a 2YO who never stays still. Then, when we were seeing Max's doctor, after he got his height check, she insisted that they check her height too. After Max's blood pressure check, she hopped up in the chair and loudly announced "My turn!!" pointing to the blood pressure machine. Max didn't think this was a good idea, but the tech was nice enough to take her blood pressure. Then, because I wanted to know (she hasn't been checked in 6 months), she got weighed. After Dr. Ebb checked Max all over, she lifted up her dress, pointed to her belly, and said "Me first belly!" until he listened to her. Then, she turned around and did the same thing saying "Now, back!!" Poor Dr. Ebb ended up basically doing a full exam on her, too. We couldn't help but laugh. Then he said "I bet she has everyone wrapped around her finger." Which is often pretty true. :)

I often am often very thankful that she is so young. To her, this is all normal stuff. I do not think she realizes how much attention (good and bad) Max has gotten because he has been sick. It really has been the year of Max. Sometimes, it seems like she is the forgotten child. She has been basically dumped at practical stranger's (to her) houses when we have had to rush to the hospital, people who know every detail about Max do not even realize we have a second child, we cancelled her first birthday party because Max was hospitalized, and barely had a second one because we wanted to make sure he was healthy. When we did plan it, we had people tell us that the only reason they went to Max's was because he was sick, and that they were not going to go to two kids birthday parties in one year. She didn't go trick-or-treating last year because of Max. But, we are lucky. She is young and doesn't see the difference. I can only imagine how hard it is for older siblings of children will illnesses like Max's. I completely understand why the hematology/oncology department has programs for siblings of sick children. It must really take a toll on some of them. We have been so lucky with Max's recovery. Many people go through much more. Instead of having a child who feels that she is missing out on things, we have a completely secure and independant child who is probably a bit too trusting of strangers, but other than that, is just easy going. Once again, I count my blessings.

Another Good Day - CBC 10/29/2007

I am utterly exhausted, having spent much of the day driving to Boston, taking Lauren for a hip x-ray (looked great) and then Max up to pedi hem/onc, but I wanted to write so that people could hear the wonderful news. Max's counts were very good yet again, and they are scheduling the port removal for some time in November. Dr. Ebb was really pleased. He gave him the okay to start preschool and to do "anything he wants to do." I think we will go to the Science Museum as soon as we get back from Turks and Caicos. :)

The kids were really great, considering that they each got dragged to the other's appointment. Lauren insisted that Dr. Ebb give her a full checkup, too, though. At least Max didn't insist on a hip x-ray.

Here are the numbers. The platelets were down a tiny bit, but the numbers fluxuate and in the whole scheme of things, they are basically stable.

WBC: 6.7!!!!
HCT: 35.8!
HBG: 13.1? (I don't have the paper here and am too tired to track it down)
PLT: 114
ANC: 3220!

His labs were so normal that there were only three flags this time (they mark if the numbers are high or low). Usually, pretty much the entire lab sheet is flagged. Amazing.

Wow! CBC - 10/03/2007

Max's numbers couldn't have been much better. I am thrilled, the doctor is thrilled, everyone is thrilled. He looks great, and the numbers matched how good he looks. Dr. Ebb still wants to wait until next month before starting school, though. No sense in risking things at this point. He will get checked again at the end of the Oct, just before the Make a Wish trip. Then, hopefully we will finally schedule the port removal. That is only day surgery, so it shouldn't be too bad.

If all goes well, this was the last time he will get the IV antibiotics. He could have just had oral meds this month, but because he was already accessed and the music therapist had told him she was coming to see him, I opted for the IV meds. He loved music therapy as usual. We also played some games, watched a movie, and did some art. He got to play with playdough with a little boy a bit younger than him, too. It was a nice visit.

Here they are. :)

WBC: 5.8
HCT: 35.0
HGB: 12.6
PLT: 127
ANC: 2240

I am pretty sure that the WBC, HCT, and HGB are all at the highest level we have seen.

May next month be as good.

Ready for Anything

Max wakes up most mornings pretty ready to play. This means that so often, as I am sitting here trying hard to drink my coffee and wake up and face the day, he is ready to play something like chainsawing bicyclist ready for a swim.

Sibling Love

This one is for "the teacher at Farrington." :)

One of the bright spot out of all of this is how close Lauren and Max have become. They really enjoy each others' company. Often, they start there day with hugs. Max likes to read to her and tell her about things. A couple of days ago, while Lauren was napping, Max wanted to wake her because he missed her. She adores him, too. They do fight and there are times when Max definitely wants her to go elsewhere (we are working on teaching him to go into his room and close the door rather than flatten her), but more often than not, they get along.

Whether dancing, painting, helping Lauren enjoy a boat ride at the amusement park, or teaching her how to drive a remote control car, they really enjoy each others' company.

He's Come So Far

A year ago, we had hoped to attend the Common Ground Fair in Maine. Instead, Max received his first blood transfusion. I was determined to attend this year, so we drove up on Friday morning. It was a long drive but worth every minute. The kids had a great time. Max especially enjoyed it. We spent most of the day in the kids' areas. The adults didn't get to do much of what we had planned to do, but sometimes you just need to let the kids do their thing. Here are some picture of a healthy looking boy

Treasure!

So often, I find myself sad that Max has not had a chance to do so many of the things that his friends are doing, like preschool and music class and swim class and dance and soccer.... the list could go on and on. I read the local community center activities lists and think about how much I wish he could go to things. Part of it is selfish, I will admit. I wouldn't mind the breaks that some of the activities offer. But also, I sometimes really feel like he is missing out on things. Like maybe if he doesn't take a class now, he will be behind later. And then we have things like yesterday, when he and Josh found an old hatbox in the attic. Josh brought it down and cleaned it and the hats up (yes Mom, we cleaned them really well before letting anyone play with them) and let the kids play with the hats that were inside. THere were two. One reminded Josh of Indiana Jones. The other was rounder with a flower. Max took one and gave the other to Lauren and they played games involving their hats. It was so much fun to watch. They are so inventive and imaginative. I love watching them learn, too. I worry that I am not doing a good enough job teaching them, but they continue to amaze me, especially Max. So maybe it isn't all bad that we are spending all this time together. This is a great age and so much fun.

Much Better Numbers - CBC - 09/06/2007

Max had a visit from the home healthcare nurse today. She did a blood draw. Believe it or not, Max was thrilled. He missed her. He was actually asking to get a blood test yesterday. Strange boy. :)

His numbers were much improved. His doctor was very happy to see them, and even cancelled next week's blood draw. He said we don't need to check again until the end of the month. He definitely wants to wait on school until his system is stronger, though. That is fine with me, as seeing his numbers plunge like that really shook me up. I went to his preschool orientation last night (is starts next week) and it was kind of sad knowing that his start date is still up in the air, and he really wants to go now that all of his friends have started school, but it is for the best. Hopefully he will have no trouble adjusting when he does get there.

We talked about removing the port again. The goal is next month assuming his numbers hold. I know that this is the third month that we have heard this, but seeing as the original plan was to remove it a year after it was put in, and that was in mid October, I think they mean it at this point.

Here are the numbers:

WBC: 4.2
HGB: 11.9
HCT: 34.4
ANC: 1344

CBC - 08/29/2007

This can be so draining at times. We knew that there was a chance that Max's counts would be down because he had been sick. Plus, he has had a lot of petikia, so I knew his platelets have been fluxuating. But, it is still hard seeing the numbers, and his white count was much lower than I expected, though his doctor didn't seem surprised at all, and was actually happy to see how good he looked. His red cells keep doign well, though. They are still in the normal range. He really does look great, with lovely red cheeks and lips. Because his white count was so low (and his ANC), they are going to retest next Thursday. Hopefully there will be a recovery by then. If not, they will think about doing a bone marrow biopsy, but hopefully it will not come to that.

I have always expected Max to wait until Oct to start school, but his doctor had been talking about letting him start in September. However, because of the drop, he wants to wait and see, so it will not be until October at the earliest.

The good news is that his doctor could see no reason to curtail his activities (except for preschool), so despite the ANC, we can still do things.

I have included a goofy picture of Max from the 4H Fair because this is kind of a downer post and so I thought a lighthearted picture was in order. He wanted to have his face painted like a green goldfish with a black eye. Don't ask us. :)

WBC: 2.8

HCT: 34.1

HGB: 12.2

PLT: 86

ANC: 510

Amazing Boy

For a child with a suppressed immune system, something must be working in there, because Max had a great day. I kept expecting for the fever to come back, for him to slow down, something, but he just played and ran around most of the day, which was really amazing seeing as it was almost 100 degrees out (hotter with the humidity factored in). He had some weepy moments, but other than that, seemed like himself. What a nice surprise that was.

Max's Health - Update

Max slept for almost 12 hours last night and woke up feeling much better. I am pretty sure he still has a low fever, but I didn't bother to check it. He has been running around and has eaten everything he can get his hands on (which really isn't unusual for our kids who tend to eat for about the first three hours of the day every day, but having skipped dinner last night, he woke up very hungry). I would guess that his fever will probably go up by the end of the day again, but maybe we will get lucky.

Max is Sick. :(

Wednesday night, I came down with a cold with fever. It is a low grade fever, but I have been worried about Max getting it. This morning, he seemed off, having a complete meltdown because his banana broke, among other things. We had a nice day anyway, going to the 4H fair for several hours (me on Tylenol) but after Max took a short nap, he woke up very clingy and didn't eat his dinner. I checked and sure enough, he was running a temperature of 100.0F. If it goes up much higher (101.5) we will have to call the doctor and it will probably mean a hospital stay. I am really hoping he will wake up feeling better. He was really looking forward to going to the fair again tomorrow.

Simple Joys

Sometimes, I need to learn from Max. He and Lauren take such joy from little things. He can be very demanding at times, but more often than not, it doesn't take much to make him happy. Last week, we had storms off and on through out the week. Max just wanted to run and play in the rain. I remember a day when I was in college, walking home from a festival in a terrible thunderstorm. We were running around, getting soaking wet, and just enjoying it. These days, when Max wanted to do the same type of thing, I wouldn't let him because I didn't think it was safe. But, I did let him stand on the porch and dance as the rain poured down on him. I, on the other hand, sat on the bench and stayed dry. And smiled the whole time.

Snorkling, anyone?

Max has been preparing for his Make a Wish trip to the Carribean. He can't wait to go play in the big pool again, and has been loving every moment that we have spent at the beach this summer. Josh got him a new mask (Cisco ate the old one) and snorkel and he has been practicing in the little pool in the backyard. The first day he had it, he wanted to get in the bathtub and try it. He is too funny sometimes.

A Wonderful Week

We just returned from a week at "The Lake." It was so nice. We spent so much time there last year, as there were so few places we could go and things we could do. It was nice to be there this year just because we wanted to be there. The kids had a great time. Max loves it up there. We fished and swam and boated and played on the rocks. He got to go flying with Grampa Rich. It is so nice to watch him play on the rocks and not worry about him falling. Of course, at this time last year, I hadn't really learned to fear the falling yet. But, it is so nice to watch him play and not worry too much. His color is great, too. I love seeing the red cheeks and lips. He has had a cough for a couple of weeks, which has worried us, but it seems to be getting better. He has no fever or other signs of illness, so we are just watching it.

I can't believe how tall he has gotten. He is muscular, too. He can run and run again. What a difference from a few month ago when he got winded fairly easily. I had never seen a child out of shape before. I just always imagined that they would run and run and never really get tired. He can do that again. We pretty much have to drag him away from activities. We had to drag him shivering out of the lake a couple of times. He is just like his Uncle Greg. :)

Speaking of Uncle Greg, we got to see him on this trip. The visit was short, but Max loved it. He adores Uncle Greg. I wish we lived closer to him.

I will post a few pictures soon.

No planned blood draws until the end of the month, unless I get worried about something. I need to learn to trust his health and not rely on CBCs to know how he is doing.

More Happy Days (A Visit to Papa's)

We went up to visit Papa and Grandma Lyd. Max woke at 5:30 the morning we were to leave, got dressed and got in the car. He was obviously excited to visit. He had a great time. The last time we visited them was in November, and Max's ANC was so low that we were really not able to do anything (though we had started to see signs that he was getting better). We went to Shaw's lobster shack, where Max got to pretend to be a clam (and I couldn't resist throwing in a picture of Grandma Lobster), walked along tidal pools, and went to the beach. It was such a great trip. In November, Max ended up in tears because he wanted to look out of one of those giant binocular things and I wouldn't let him because I was afraid he would pick up germs. This time, he got to run around on the beach with other kids and I didn't worry. What a difference.

Happy Days

I promised some pictures. Here they are.

We gave Max his presents from us on his actual birthday. He got a guitar that Josh found at a garage sale. It is a pretty nice one, for a child's guitar. It came with a great case that had another child's name on it, but a friend of ours made a patch for it, so now it says Max. He has been playing it a lot. We took it to Papa's and he tuned it for him.

CBC - 07/26/2007

The hospital visit went very well today. Afternoon visits mean rush hour traffic on the way home, though, so I am posting this late.

Dr. Ebb was very happy with the way Max looks. He is still growing like a weed and is now over 103.5 cm tall. His counts were down a bit from last month, though, so he pushed the decision to remove the port off another month.

I hadn't written about this because I didn't want to worry people, but last week, after he came out of his birthday with a bruise on the cheek (from a very hard collision with his cousin), and some broken blood vessels in his eye (from me poking him in the eye with a fingernail :( ), I got worried and had the nurse do a blood draw. The platelets were down to 93, but that was high enough so that I wasn't worried about them. However, his white count had dropped to 3.5 and his ANC was only 544. So, as compared to last week, his counts were actually up. I was pretty relieved to see that.

Here they are.

WBC: 4.2
HCT: 33.6
HGB: 12.5
PLT: 97
ANC: 1220

I asked the doctor and he said it is normal for numbers to fluxuate. So I am not too worried. I don't mind a dip as long as it goes back up, though I have to say the 544 worried me. His ANC hasn't been below 700 since December. I am really glad that is is back up over 1000.

We go back in a month. Hopefully they will decide to remove the port then. At this rate, it will come out in October as originally planned. It isn't a big deal, but symbolically it will be.

An Anniversary

I was going to post about this last week, but I think it might have come out to be more negative than it actually should have been, so I waited.

Friday was the one year anniversary of the day when we first found out Max was sick, even though it was two more months before he was finally diagnosed. What a long year it has been. We have learned that we have strength that we didn't think imaginable. Max has been so amazing through all of this. He has stayed such a happy and positive child. We are so lucky that Lauren is as young as she is, too, because she has been so accepting of it all. She has been passed around from person to person, sometimes dropped off at people's homes when she barely knew them. We have made some great friends. We have had many sleepless nights, and I am still not sure when the fear and worry go away. I still can not bathe Max without looking at every single bruise on him, and constantly look for petechia. But, it is getting better. We went to the park on Tuesday and Max climbed and ran and I found that I wasn't spending the entire time worrying about him falling.

A person close to me told me that she doesn't read Max's blog because she thinks blogs are "self serving." I am amazed at how much that upset me. I suppose she is right, though. This blog has really helped me get through this. I thank all of you who have left supporting comments either on the blog or directly to me. You all have helped us get through the last year.

Max has a CBC scheduled this afternoon. I will post when I get home. I also have some new pictures to post, but the computer is being difficult and I can't seem to get to them right now. I will try to post those in the next couple of days. :)

Birthday Party

Our last really happy memory last year, before all the worry began, was Max's third birthday party. It was a small family party, and everyone had a nice time. Four days later, he was in the hospital. Well, it has been a year. Today, we celebrated Max's 4th birthday, though he won't be four until Wednesday. We had family over, and a couple of friends. It was casual, but everyone had a lot of fun. All Max asked for was a Spiderman birthday candle, which I ended up ordering on the internet for a ridiculous amount of money (well, the candle wasn't bad, but the shipping was), but it was worth it. He was thrilled. It was hot, so the kids played in the kiddie pool and sprinkler, while the adults sat in the shade. I can't think of a nicer way to spend a party. Max got a basketball hoop which he is thrilled about, a Buzz Lightyear backpack for taking to the beach (must go to the beach sometime). He got some great games, too. I don't think he could have been happier.




Here are some picts. Unfortunately, for some reason, we didn't

manage to get any great pictures of Max, but hopefully you will see how much fun he had.

CBC - 07/02/2007

Max's results were good again today. His red count is at a normal level, his white count was way up, and his ANC was very good. His platelets were up a small amount from two weeks ago. His reticulocyte count hadn't come in by the time we were ready to go, but given the rise in his red count, we are sure it was good.

Max's doctor felt that his numbers have been steady enough to eliminate the middle of the month blood draw, so we are down to once a month visits. If his numbers are good next month, they will make plans to remove the port. He will get oral antibiotics after that, instead of IV antibiotics. This will make our visits much faster and eliminate Max's biggest complaint, the removal of the awful tape stuff that they put over the needle when he is accessed.

The music therapist was there today. Max loved his time with her. I got a massage. All in all, it was a good visit. :)

Here are the numbers.

WBC: 5.8
HCT: 34.6
HGB: 13.0
PLT: 109
ANC: 2150

A Long Year

I just realized that I first noticed signs of Max's illness a year ago last night. We were returning from our amazing trip to Columbus Isle, the Bahamas, and I noticed funny bruises on Max's neck. I brushed it off at the time, but it was the first indication we noticed that something was wrong. Less than three weeks later, he was in the hospital.


He looks so good in the pictures from the trip. But, even just a few days after we got back, we have pictures of Max from when we picked up Cisco and you can see the awful bruises on his legs.


















And just to end on a happy note, a fun picture of Max with Uncle Greg.

It is no wonder that Max's Wish is go to back to "The big swimming pool with the steps and the stairs and the beach where we made sandcastles with Uncle Greg.

Max's Fur

We go into MGH tomorrow for another CBC and checkup, but I wanted to share this. Because of the cyclosporene Max took for 6 months, he is very hairy. He has hair on his arms, legs, back, neck, etc. He even had a little mustache. Since going off the meds, we have seen a definite decrease in the hair. It is such a nice sign for us, to see him starting to look "normal." However, I am not sure how Max feels about this. He likes his "fur" as he calls it. Especially the hair on his arms. He does not realize this is different from other boys his age (got to love being 3) and, to be honest, I don't think it would bother him if he did realize it. Now that we are out with other children, some of the kids have commented on it, either to their parents or to Max. One little boy even asked Max why he had hair on his arms. Max's reply: "Because boys have hair on their arms." The other boy (5 years old) looked at his hairless arm with great concern, wondering why he didn't have hair. It was everything I could do not to laugh.

I am very grateful that Max is going through this at such a young age, as he is young enough to just accept everything he has gone through. He has never been angry or frustrated or scared. He has faced everything with a positive attitude, though he isn't very excited about the blood draws these days. But, he still seems to face it all as an adventure. He still loves to play doctor and told me that he wants to be a "blood test doctor" when he grows up. I tried teaching him the word hematologist, but he told me it was too hard. :)

It will be interesting to see how much he remembers of all of this later in life. He has an incredible memory. It will be also interesting to see what he thinks of it all.

CBC 06/19/2007

Max has a cold, and I expected his numbers to be strange, but I am pretty pleased with them.

WBC: 3.7
HGB: 11.7
HCT: 34.1
PLT: 104
ANC: 1628

Great Results! CBC 06/01/2007

I will try to write more later, but the kids want to play. However, if I don't do it now, it could be days....

We just returned from MGH where Max got his pentamadine and a blood test. The results were as good or better than I could have ever expected. Everything was up. His white count was way up. The doctor was thrilled. He said if the results are this good next month they will arrange to have the port removed.

WBC: 4.8
HCT: 29.7
HGB: 11.2
PLT: 141
ANC: 2060

46% of his white cells were neutrophils!

We couldn't be happier.

CBC 05/17/2007

Max had his first CBC since going off the meds. His numbers were down a bit. I honestly don't know what we are supposed to expect at this point. Nothing was horrible, but the ANC is a bit lower than I would like to see. The white count bounces around so much, though, that it is hard to know where it was yesterday or tomorrow. I haven't spoken to the hospital yet, but I am assuming they will stick with just having him come in two weeks from tomorrow.

He looks great. :) We have been having a lot of fun. His ANC is about 500 so I am assuming we can continue to do stuff outside.

WBC: 2.9
HCT: 28.9
HGB: 10.2
PLT: 126
ANC: 812

Looking Good

Max has been enjoying the good weather, doing a lot of running and jumping, though we don't have to be outside for him to find an excuse to jump as high as he can.

I also couldn't resist this picture of him peeking out of the slide. The kids love this structure. I am so glad we have it.

Great News Today - CBC 5/4/07

The last two weeks have been really scary for us. We thought we saw some petikia on Max's neck last Sunday. Then, we thought we saw more on Tuesday. We were pretty sure that his platelets had crashed. We did not get him tested early, because he had to go in on Friday for Pentamadine, and we wanted to avoid an extra needle stick if possible, so we have basically just been worrying and waiting. Today was the day. I took him in early, they tested him by nine, and then I waited some more. Max had a blast playing with one of the Child Life assistants and the Music Therapist. Finally, Dr Ebb came in to examine him and gave me the numbers. His platelets were actually up! Way up! 142. His red count was up, too, and his reticulocyte count was at 2.1, so his body is making more red cells to make up for the deficiency. His neutrophil count was down some but still over 1000. We are thrilled. Dr. Ebb told us to take him off the medication starting today. He gets another test done at home in two weeks and will go back for Pentamadine in a month. We are so relieved.

WBC: 3.5
HCT: 28.9
HGB: 10.6
PLT: 142
ANC: 1010
Retic: 2.1

Spring is Finally Here

Seeing as I wrote complaining about all the rain, I thought I would write again and say that Spring has finally arrived. After all that cold weather, it suddenly got warm and sunny. Really warm. We have been taking full advantage of it. Max helped Daddy and Grampa Richard clean the yard, he and Lauren helped me with the garden, we played with the hose, and went to the playground yesterday. It feels so good to be able to get out of the house.

Late CBC numbers

Sorry. I totally forgot to post Thursday's results. They were okay. His platelets were up a bit, everything else was down a bit, I think (I need to go back and look). The doctor said keep him on the drugs until the end of the month and see how he is doing. If things look okay, they will take him off the cyclosporene. We are very hopeful.

WBC: 3.6
HCT: 27
HGB: 9.5
PLT: 86
ANC: 1584

It feels like it has been raining for a month, but I guess it has only been for a couple of weeks. I am pretty bored with it, though, but Max has been taking it in stride. He doesn't seem bothered by the weather and is perfectly happy playing soccer outside even if it is 35 and raining with high winds. I wish I were as hardy. We have been trying to keep busy inside, too. Today, we made lemonade and played with homemade playdough. I made several colors yesterday, though today it is all one large, redish-orange mass. It still makes a great road for the construction crew to work on, though. Last week, Miss Ellen came by with spin art, which Max loved. He made several masterpieces, which will find their ways to different grandparents refridgerators soon.

Max seems to be doing very well. We are keeping our fingers crossed that tomorrow's test results will be good.

Today's Visit

We headed to MGH today for another dose of antibiotics and a CBC. Josh came for his first full visit (well, he left before we did as he didn't realize it tends to be a three hour stay) and we got to talk to the doctor for quite a while. Max's counts were better than they were when he was hospitalized almost two weeks ago, with the exception of the platelets. His platelets were down to 81. Dr. Ebb spent a lot of time telling us that there was much more good news than bad, though. He was pretty sure I was going to be upset over the platelet count. Actually, so was the nurse, who apparently told him he got to be the one to tell us the results. Anyway, the good news:
1. His HCT and HGB, which had dropped significantly between the Thursday regular CBC a couple of weeks ago and the test at the hospital two days later were both up. They are not as high as they have been, but his body made enough red cells to improve those numbers.

2. His white count and ANC, both of which spiked when he was sick, were back aroud where they had been before he got sick. His immune system seems to be working the way it should be working.

3. The doctor spent a lot of time explaining this to me, but I still do not really understand it, so please forgive the fuzziness. Under PLT comments on the hematology report was the comment Large Forms. Apparently, this is an indication that his body is working hard to produce more platelets. It is kind of like looking at the number of baby red cells or white cells, but I guess platelets are different. Anyway, the doctor thinks that chances are good that Max's platelet count actually dropped lower than 81 and is recovering.

They checked his reticulocyte count (baby red cells) in hopes of seeing a nice high number showing that his body was pumping out lots of new red cells, but it was actually 1.4 percent which is "normal." If it had been <>2 percent. However, as long as his red count stays steady he will be okay, even if it is a low number. And we have seen that his body is capable of producing more as it did over the last two weeks.

So where does this leave us? He offered to do another CBC in a week for my sake, but I couldn't see sticking him if we didnt' need to, just because I am worrying. His counts should be safe enough even if he is still dropping, so there is no need to test any earlier than two weeks from now. As of April 16th, he will have been taking cyclosporene for 6 months, and unless his platelets continue to drop, he will stop taking it after that. He will still need the antibiotic for another 6 months, so we will go back to the hospital in a month for another dose of pentamadine. He will probably continue to get blood tests every couple of weeks for a few more months, depending on how things go. I am sure there will be a bone marrow test, but we didn't talk about when. As long as he seems okay, they are going to remove the port sooner rather than later (originally, they planned to keep it in until Oct, but it has been bothering him, so they would like to take it out as soon as they can. He is growing like a weed, so hopefully he is just outgrowing it, but no sense in taking chances). After the port comes out, he will get the monthly antibiotic orally. He will still be considered immunosupressed until October. After that, hopefully life can return to a somewhat normal state.

So, I guess we just keep waiting and trying not to worry. He seems good, and the nightmares have gone away. He isnt' even grinding his teeth as much as he was last week, so hopefully the stress he was exibiting was just due to the illness and that hospital stay. He is definitely getting tired of this, though. I haven't figured out how to tell him there is still a very long road ahead.

CBC 04/06/2007
WBC: 4.2
HCT: 27.9
HGB: 10.3
PLT: 81
ANC: 1640

Feeling Good Again

Max is finally feeling good again. He wasn't himself for several days after the fever broke, waking up many times during the night. We are not sure if he was having nightmares, but he was waking very upset, and also crying out in his sleep. We were pretty worried that maybe the trip to the hospital had taken its toll. However, He finally slept well again on Friday, and seems back to himself today.

We head to MGH on Friday for his last appointment before the end of the six month treatment.

Feeling Much Better

Max is feeling much better. Yesterday, he seemed to be on the mend a bit because he was less clingy and more whiney and demanding. However, the fever was still around. However, it went down a bit after giving him a bath last night, and when we went in to check on him around our bedtime, he felt cool to the touch. He woke a couple of times over night, but woke up without a fever and it stayed away all day, even in the afternoon. He was more prone to crying and tantrums than normal, but other than that, he seemed like normal Max. What a relief.

His doctor was very pleased to hear that his fever was gone. He doesn't see the need for any follow up unless something changes. As long as he continues to feel well, we won't need to do anything until his regular appointment next Friday.

Thanks to all the people who helped us get through this.

Quick Update

Max is still running a fever but had a decent day. Tylenol or ibuprofin lowers it, but as soon as it wears off, the fever is back. He was in pretty good humor today, though.

It doesn't look like we will have to head back to the hospital this week unless something unexpected happens like he takes a turn for the worse or the cultures grow something. Hopefully he will start feeling better tomorrow.

A Scary Weekend

Lauren was sick last weekend. She ran a fever of close to 103 for three days straight (though it went down with Tyelonol) and still had a fever on the fourth day. All last week, we worried that Max would get sick, but he didn't. Saturday morning, as I was getting ready to head to Boston for my Girl's Weekend, I said that I was relieved that he had avoided it. Famous last words. Max came down with a fever around dinner time on Saturday night. Josh realized things were off and checked his temp and it was 101.5, so he called me and then called the pedi hem/onc on call, who was one of the doctors that we know well. She arranged for a room in the peds ward and Josh dropped Lauren off and a friend (our savior)'s house and headed in. They took blood to check for viruses and infection, gave him some Tylenol and planned to keep him at least 24 hours.

He woke up feeling good on Sunday morning, so they decided to release him early, but as they were doing the paperwork, he woke from a nap saying he needed to throw up, which he did, and I realized his fever was back. They watched him to make sure he wasn't getting dehydrated and finally sent us home around 9PM. His fever was back and high (102.6) by then, but they gave more Tylenol and you could see that he was feeling better before he fell asleep on the car ride home. He is sleeping now. We have to check in with ped hem/onc tomorrow. I suspect that despite the vomitting he has the same thing that Lauren had. Knowing that makes me worry a bit less, but I do hope he recovers quickly.

His platelets were down to 92 on Friday night. Everything else was really wacky (WBC 7.1, high ANC, low HCT) but they think those are because of whatever he is fighting.

I will update this tomorrow.

When Does the Worry End?

I am tired of worrying. Maybe I shouldn't be worrying. Max seems to be doing very well. But, his platelet count seems to be dropping. I talked to his doctor on Tuesday and he seemed very optimistic. He said that as far as he is concerned, Max's numbers are stable. Blood counts fluxuate significantly, and he told me I shouldn't worry. He was thrilled with his ANC, which has been way up. He started making plans for the end of the treatment. I felt better. Then, he had another blood test on Thursday and his counts were down again. They are not down a lot, and they are great compared to where he was from July to January, but none the less, they were down. It worries me. I am tired of being worried. Every night when Max gets ready for bed, I look him over and evaluate every bruise on his body. He is an active three year old who loves to jump and run and has what are probably the normal three year old bumps and bruises, but I end up looking at every single one of them. Do I know where this came from? Is it darker than it should be? Every sneeze, I worry. Lauren gets sick, and I worry. It is exhausting.

For the first time I really see Max getting tired of all of this, too. Thursday morning, when I was putting the numbing cream on him in preparation for the nurse's visit, he told me he didnt' want any more blood tests. He was great as usual when she was there, but at the end of the day, when I asked him if he had had a good day, he said it was a good day, but not for him, because he had had a blood test. He again told me he didn't want anymore blood tests. I didn't know what to tell him. Even in the best of cases, he is looking at several more months of tests at least once a month. He will still need to be checked multiple times a year after that. Eventually, he will go to once a year. But I don't know when that will be. He has been so strong. I wish I could tell him it will be over soon, but it won't.

Max really is doing great. He is happy and active most of the time. He loves to play in the snow and is disapointed to see it melting. He enjoys playing in the mud, too, though, and will be happy when we can start going to the zoo and the park regularly again. I have been trying to do more activities with him during the day to stimulate him. We do a lot of art, and have been baking regularly. This week, we planted some seeds for our garden. He wants to grow pumpkins and carrots and melons and corn. He really wants to grow "my very own corn." I have never planted corn so this should be an adventure. He is starting to work to learn his letters, too. It is fun to watch. He is a smart boy, and I am trying to give him opportunities to explore and learn. I don't think I am doing as well as his preschool teachers and Miss Ellen did, but I am getting there. We have fun.

I didn't get all the numbers on Thursday. The nurse called me when I was in the car and I couldn't write things down. These are from memory, and I forgot to ask for the white count.

HCT: 30
HGB: 10.9
PLT: 95
ANC: 1700

Fun in the Snow

I just wanted to post this picture. Max looks great and has plenty of energy. He was thrilled that his soccer ball reappeared after being buried in the snow for the last few weeks.

A Very Late Post

I need to stop making appointments on Fridays. The clinic is crazy busy on Fridays and I always get home exhausted and then I don't post. Sorry for the delay, everyone.

Max's CBC numbers were good again last week, though his platelets were down a bit, which made me nervous. His doctor has been out of the hospital for the last month, so we didn't get to talk to him. I suspect there is no significance in the drop, but it was the first time the numbers had gone down and it has worried me some. His neutrophil count, on the other hand, was over 2000, which was the highest it has been. He continues to do well and was great at the hospital as usual. One advantage of going on Fridays is the art therapist is there. He really enjoyed drawing, painting, and playing with modelling clay. It really was a very easy appointment.

The good news was that last week, we had an early taste of Spring and were able to do a lot of things outdoors, including visit the playground and the zoo. The zoo trip was especially nice for all of us. Unfortunately, Lauren caught something during one of our outtings (probably the playground) and has been sick since Thursday, but it was so nice for all of us to get out, see other people, and have a change of environment. We have all been pretty stir crazy being stuck inside during the brutally cold weather.

I have not had a chance to talk to his doctor yet, but I suspect we will go back in three weeks and that his nurse will come late next week. I will give them a call on Monday and confirm that.

I have misplaced the counts printout but this is what I remember.

WBC: 4.4
PLT: 209
ANC: 2014

His HGB and HCT were in good shape. In fact, his HGB was in the normal range.

We have just about a month left on the medication. I am hoping that when he finishes with the cyclosporene, his mood will level off a bit, though I realize he is 3 and therefore prone by nature to meltdowns. I hope they will be less severe, though.

Haircut!

Max has been asking to get his haircut for days now. I have cut the bangs a couple of times, but it is so thick and I have been afraid to really mess it up. Plus, he tends to wiggle when I do it. Yesterday, I was going totally stir crazy. I am tired of being stuck at home. I miss going places. I miss the aquarium, the museum, playgroup, Miss Ellen's class. I finally decided to take him to the hair cut place. We went after lunch, when I hoped it would be quiet (it was) and Max was great. He sat fairly still for her, and even let her use the clippers, though when she went to clean up his neck and under his ears, he announced he was all done, and got out of the chair. I am just happy to see his face again. I had forgotten what shape it was. Then, we got some sushi (an avocado roll) and headed home. It was a nice outing for everyone. Well, maybe not for Lauren. I think she was pretty bored. :)

A couple of pictures

I promised that I would post some pictures of Max. He looks really good, despite the great need for a hair cut (I finally trimmed the bangs, but I am no professional) and a shave. He isn't a huge fan of getting his picture taken right now, though.

He was given a couple of bears when he was in the hospital. One was a handmade bear made from a Didymos baby wrap. The other was a Build a Bear dressed as Buzz Lightyear. He dressed Didy Bear up as Buzz. The outfit almost fits.

I wanted to go play in the snow, Max wanted to go swim in the kiddie pool. This is the resulting outfit. We obviously didn't go swimming. I don't think we got playing in the pool either.

Winter Fun!

We finally have snow and Max's platelet count is plenty high enough for him to participate in winter activities! We have been taking advantage of this to the best of our ability. Max loves sledding on the snowbank at the top of our driveway by the garage (way away from the road). He also has enjoyed snowshoeing around the yard. After days of being too cold to do much, it finally warmed up and we tried to go skating, but the ice pond had melted. We are going to try again this weekend. Max can't wait to get out on the skates that a neighbor lent him. (They also lent him the snowshoes and some skis.)

I can not begin to express the joy I feel watching him play like a normal 3 year old. I have almost stopped worrying about every tiny fall. I am not sure if I will ever be able to return to the completely relaxed mother that I was, but I am a lot better. We went to the park the day that it was too warm to ski, and I was able to talk with another parent while Max ran round the park, playing on the slides and swings. I didn't let him climb some of the scarier things, partially because it was snowy and his clothing was bulky and harder to manuver in, but other than that, I just let him have fun. I can still feel the panic in the back of my mind, but it is much less prevalent.

CBC 02/22/2007

I want to write these down really quickly while I can, though Max would really rather play blocks. :)

WBC: 4.8
HCT: 32
HGB: 11.3
PLT: 124
ANC: 1920

Yay!

A Late Update

Max went to MGH for a routine checkup a little over a week ago. The appointment went very well, but we took Lauren in that day as well to see her GI doctor (who said she will probably always be thin but as long as she continues to grow we don't have to go back - yay!) and balancing the two children all day was exhausting and I basically crashed when i got home. Then, I left for a much needed two day vacation to visit my brother, without the kids. So, I got behind on my posting. I have some great pictures to post, but things have been busy, so I am just going to post the CBC results and a few comments.

WBC: 4.9
HCT: 30.9
HGB: 11.4
PLT: 114
ANC: 1080

Dr. Ebb is really pleased. He was happy to see the white count continuing to rise and didn't seem concerned that his ANC and HCT were down a bit. He said that his platelet count is high enough for him to go sledding or skating (with a helmet, of course). Now that it is finally cold enough for their to be ice on the pond and it snowed, we will be taking advantage of that. Max has been sledding on the little pile of snow outside of our house, and a neighbor gave us skates that fit him. If the weather cooperates, I might try him out on the skates tomorrow. He really wants to give it a try.

Sharing Experiences

I met the mother of a boy who was diagnosed with aplastic anemia. One of the doctor's at MGH gave me her email and I finally managed to email her a couple of weeks ago. They live a couple of towns over. Her son was diagnosed in the summer of 2003 and has done very well. He is off at college now and is the picture of health. It is great to hear things like that. She is running the Boston Marathon as part of a team raising money for Mass General CancerCare for Children. She is training hard. If anyone is interested in supporting her, here is the link to her webpage: https://www.firstgiving.com/gaylec

It was really nice to talk to someone who has gone through much of the same things that we went through. I can't explain why, but it helps to talk to others who have gone through the same emotional experiences.

Max goes in to MGH on Wednesday for the monthly antibiotics, CBC and checkup. This is our first scheduled appointment since all this started. It is so nice to be at this point.

Settling In

It seems so strange to me that I rarely have anything to post these days. Sometimes, I have thoughts that I consider writing down, but the kids keep me hopping and often it just doesn't happen. Life is starting to feel normal again.

We visited Papa and Grandma Lyd last weekend. We last visited them over Thanksgiving, when Max's numbers had been at their lowest. When we stopped at a rest area, we didn't let Max go in, but instead had him use the potty we brought with us. We worried constantly. This trip was so different. Max was able to go into the rest area (it was almost empty) which was a good thing because it was sub zero outsite. He had a great time looking at the maps and things in the visitor area. We opted not to go out to lunch, but we ran around in the snow and I didn't worry about him falling. He had more energy, though I can see that he needs to get out more. He and I are both out of shape. But, these days he gets out of breath rather than runs out of energy. It was a lovely visit.

We are starting to have friends over again. It has been so nice for both me and the kids. Max's social skills need a bit of polishing, but it is hard to tell how much of that is related to not seeing people and how much is just him being three. He is definitely enjoying seenig people, though. So is Lauren. For that matter, so am I. It is nice to talk to other adults who are not in the medical profession again. The one who really needs more socialization is Cisco, who behaves terribly when company comes to visit. I have been crating him, but am starting to work with him when people come over.

The only things that Max still can't do is go to the grocery store, mall, etc, and return to school. He keeps asking about school, and for some reason has started asking if the doctor said it was okay for him to go to the grocery store. I am not sure why this has come up all of a sudden. Perhaps he over heard something? I don't really miss grocery shopping without a 3 year old, though I do miss the ability to do whenever I need to.

It snowed today for the first time this winter. (Well, we have had a dusting here and there.) The kids are outside playing. I am going to go join them. If the snow stays, maybe we can go sledding. I didn't think we would be able to do that this winter, but he can. We are happy.

Close to Normal?

The visiting nurse came today. Max's regular nurse was out sick, but her backup was very nice, and Max wowed her. Because he has been so great with all the tests, I just assume that all kids are this good, but, as she was getting her stuff together, Max was asking questions, including if he could cry (he always asks this and never really does). She said of course, and then said to me that most kids are already crying by that point. I don't think she really believed me when I said that his crying was mostly for show until she had finished. It probably hurt more than normal, too, because she was early and I put the numbing cream on late.

His counts were amazing. His ANC was in the normal level and everything else, except for the white blood count, are getting closer and closer to normal. The white count will stay low as long as he is taking the cyclosporene. His platelet count was over 100! This is really feeling real now. We have been getting together with people more and more, trying to resume as much of a normal life as possible. He still can't go back to school until next fall, but we stopped in to visit his preschool after they had let out for the day to sign him up for next year. He was thrilled to see his teachers again. They couldn't believe how much he had grown. It is nice to be planning for the future again.

WBC: 3.9
HCT: 32
HGB: 11
PLT: 109
ANC: 1521

A Good Phone Call and Contemplating a Scar

Max's doctor called this evening. They have been tracking his reticulocyte count since the beginning. This is the percentage of young red blood cells in the same. His reticulocyte count has been around 1% since they started tracking it in July. In a normal situation, a person should have a reticulocyte count of around 1%, but, if you are anemic, the bone marrow should be making extra baby red cells to make up for it, so that count should be higher. If someone is anemic and they have a reticulocyte count of around 1%, then it is an indication that there is a problem with their bone marrow. Back in November, Dr. Ebb said he was hoping to see a number in the 4-5 range. (It was still between 1 and 2 back then.) Well, they got the results from the sample they took on Friday and it was 4.5%!

Max noticed the scar on his chest today for the first time. I guess he has had a bandaid in that spot since the surgery to put the portocath in back in September. He tends to get rather attached (no pun intended) to his bandaids and won't let us take them off, so I am usually talking him into letting me remove the one from the last test in order to put the numbing cream on for the next test. In other words, there is always something in that area. Well, today the bandaid fell off. I hadn't noticed, but Max saw the red scar and asked me "What kind of bandaid is that?" I told him it wasn't a bandaid, but that it was a scar, and tried to explain that when they put the thing in his chest for his blood tests (it leaves a raised spot on his chest, so you can feel it), they left a scar. Then, I showed him a couple of scars on my body (he wanted to see the one on my chest but I don't have one, so he had to settle for the couple on my head and arms) and then we looked at the one on Daddy's face from when he was bitten by a dog when he was a child. He told Josh all about how it was from when the doctors put the blood test thing inside of him. He never fails to amaze me.

A Good Visit

Max had an appointment at the clinic today. They drew blood and gave him his antibiotic. His counts were great. They are still pretty far off "normal" but way out of the danger zone. Dr. Ebb said that his platelets were practically high enough to play hockey (with a helmet, of course). It sounds like winter activities like sledding and skiing are not out of the question after all (of course, it is going to be back into the 50s this weekend but that is a different conversation). They are moving him to blood tests every two weeks now. They are not 100% positive that the insurance will continue to cover the home nurse, but I think we are okay for a few more visits, as we just got a letter saying they approved 4 visits. If he only needs tests every two weeks and goes into the clinic every other test, that should get us through until April. I can't believe I am even thinking this way. It is amazing. We actually made an appointment when we left, for a checkup and more pentamidine. We haven't made a normal appointment since this started back in July. It is like walking into another world.

We sat in the waiting room for quite a while today, as it was really busy and bed space was at a premium. Normally, they would have had him wait in the room between weight checks and getting started. He had a great time playing with the toys in the waiting room, and there were other children in there for him to play with. He spent a lot of time playing "Treasure Boat" (it was a pirate boat) and kitchen with a 5 year old boy and trains with a 2.5 year old boy. It was nice seeing him playing with other kids again. The 2.5 year old seemed pretty intrigued with him. His mother told me that he had been pulled out of daycare when he got sick and misses playing with older kids. It is hard to see all these children who are so sick, whose lives have been so interrupted. There was a 7 month old baby with bladder cancer there today. He was diagnosed two days before Christmas. I can only imagine how devastating that must have been. We received such an amazing Christmas gift. They had the opposite happen. The 2.5 year old boy has a brain tumor. He and his parents are from Foster City, CA. MGH apparently is the best place to go for pediatric brain tumors. I recognized that look in his mother's eyes. Fear, exhaustion, disbelief that your child is going through this. And all around us, children who are so sick were playing and laughing.

WBC: 4.6
HCT: 28.8
HGB: 10.5
PLT: 75
ANC: 1196

Happy Days

Max has really been enjoying the outdoors. It was ridiculously warm on Saturday (almost 70) and we played soccer and just ran around the yard like lunatics. We had a ton of fun. Max seems to have more energy, though his endurance is not what it used to be. I am going to make an effort to run around with him more and more to get him (and me for that matter) back into shape.

Today we went to the MGH pedi hem/onc holiday party. It was the first time that Max has been in a big group of people since June and he was pretty shellshocked at first. But, he has always been cautious in large groups, so some of that is just his personality. He did eventually warm to it, though. He didn't really partake in any of the activities, preferring to watch from a distance, but he enjoyed the food and, while initially afraid of Frosty the Snowman, was happy to meet him once he discovered he was handing out presents. We had a nice time. It was interesting to meet other families who have been or are going through similar things to us. It was also fun to see the doctors and nurses outside of the hospital environment.