Transfusion Update and CBC: 11/29/2006

Max went in to MGH today because he needed red cells and they expected him to need platelets. His platelet count was actually 29, and there is a shortage of platelets right now because people tend not to donate blood during the holidays, so we are going to go back on Friday for the platelets. The transfusion went well, if long. Max enjoyed playing with one of the volunteers, though, so I got a bit of a break. He got hives halfway through, but Benadryl cleared them up.

Dr. Ebb said that they are going to start looking for signs that things are starting to improve. They hope to start seeing less need for platelets in a few weeks. They checked to see how many baby red cells existed in his sample today, and the number was a little higher than last time, but still pretty low (1.3). They are going to be checking that regularly now, though.

The best news today was that his neutrophil count was up significantly. It was still only 319, but that is a lot better than <100.

WBC: 2.9
HCT: 20.3
HGB: 7.7
Platelets: 29
ANC: 319

CBC - 11/28/2006

WBC: 3.1
Hematocrit: 21
Hemoglobin: 7
Platelets: 46
ANC: 64

His red count (Hematocrit and Hemoglobin) are quite low. He is getting a transfusion on Wednesday. By then, his platelets should be low enough to justify more platelets, too. We can tell he is ready for red cells. He still seems to have plenty of energy, but then will all of a sudden stop, sit down, and tell us he needs to take "a little rest." Then, he is up and running again, but the little rests are happening a lot and he doesn't usually do that. His ANC is still scary low. I really wish it would go up some.

How to become a bone marrow donor

This is a video that Max's uncle Greg put together to help get the word out about bone marrow donations. These crazy people show us all how easy it is to order and submit a donor registration kit.

Please, Mom?

We were able to go to Maine for Thanksgiving. Because Max didn't need a transfusion until Wednesday, they were pretty confident he wouldn't need anything Thursday or Friday, so we were cleared to go, despite the really low ANC. We have also been giving the go ahead to take him to places outside, so the day after, we went to Pemaquid Light. It was a gorgeous, if a bit chilly day. The surf was high, because of an offshore storm, and the waves were impressive. We had a lovely visit. Unfortunately, Max really wanted to look through the 25cent telescope thing, and mean mom would not let him. It was really hard on all of us to say no about that. No matter how hard we try to act like life is normal, we have the reminders that it is not. Hopefully next year he can do it. At least the lighthouse was closed, so we didn't have to tell him no to that.

Update for earlier post

The nurse called us back this afternoon. She talked with the doctor and they do not feel that Max needs to go in first thing on Monday. His red count has been dropping slowly over the last close to a month period, and they think it will be okay to just do a nurse's visit on Monday. Then, we will probably go in on Wednesday for platelets and red cells. If he looks pale or seems tired, that may change, but as long as he seems okay over the weekend, that is the plan for now.

More Platelets and CBC

We went in to MGH again today for a platelet transfusion. Max's platelet count was actually a little higher than I expected. It was at 13. He did well with the transfusion though he was tired when we were done and fell asleep as soon as he got in the car.

His counts were not exactly where I would have liked them to be. His red cells are down enough that they will probably transfuse on Monday. His ANC is scary scary low. His white count is down, too. I guess he does have some new cells, though.

The good news is that we were given the go ahead to go to Maine tomorrow to have Thanksgiving with Papa and Grandma Lyd.

WBC: 2.7
Hematocrit: 23.8
Platelets: 13
ANC: 54

Yes, that is 54, not 540, 54. :(

CBC - 11/21/2006 - Well Partial At Least

It was a crazy day, and there was a lot going on when the doctor's office called with the CBC results. I wrote them down, and now I can't find them. So, this is what I can remember. His platelet count was 24,000. He is going in for a transfusion on Wednesday, though his gums were bleeding a bit today, so we may reconsider that tomorrow morning. His hematocrit was in the 26 range I think, and his ANC was 230. The doctor's office seemed surprisingly pleased with that ANC number. Maybe I am overobsessing about the ANC.

No More Steriods!

Today was the last day of the steriods. We have been tapering them off gradually, and the puffiness in Max's face has really gone down. He is starting to look like our little boy again. The bruise from a fall he took the day we came home from the hospital is finally fading as well.

For some reason, Max says this thing for childproofing a toilet is something for doing blood tests and he declared it part of his blood test kid. I am not sure what it reminds him of. I am going to have to pay more attention at the next visit. Perhaps the tray where they set things up? Maybe it will become obvious the next time he plays blood test.

CBC - 11/16/2006

WBC: 9.6
HCT: 28
Hemoglobin: 9.7
Platelets: 97
ANC: 198

We are very happy about the platelet number. He must have gotten quite a boost from Monday's transfusion. We do not have to go to the clinic on Monday. Instead, the nurse is coming to do another blood draw. Given the results the last two Mondays, he shouldn't need to go in that day. Hopefully he won't need to be transfused until Tuesday or Wednesday. We are hoping to go to Damariscotta, ME to see my father and step-mother for Thanksgiving, but have not been given the green light on that yet.

I am not excited about the ANC numbers. His white count is actually pretty good, but his body is just not making neutrophils. He had 1 in the last sample. :( However, the doctors seems a lot less concerned about the ANC than I am.

Today was the last day of the steriods. The puffiness on his face has gone down already. He looks a lot better. Maybe we will manage to get Christmas pictures afterall.

CBC 11/13/2006

Max went to MGH this morning for another platelet transfusion. It went very well today. No hives! Yay! May that keep up. It was another long day for us, though. The clinic was busy, and we got there a little later than we had hoped, and it ended up being a full day between dropping Lauren off at a friend's house (where she had a blast and napped like a champ.), driving in, waiting for the CBC results, waiting for the platelets, waiting for the transfusion, waiting to see if he got hives, and driving home. Max and I played Don't Break the Ice (or, as he calls it "Break the Ice" because he likes breaking it) and blocks for quite a while. A volunteer also played with him for a bit, so I got a break and actually got lunch today. Max was pooped and practically fell asleep on my back as I carried him to the car.

I talked to the doctor today and he said that he is very pleased with how well Max is doing. His cyclosporene level is still low, so they upped the dose again, but he is going longer than expected between transfusions. His red count has been dropping slowly, but he is still a ways from needing more red cells. His CBC showed new, young red cells, too, so at least his body is making some. His ANC was lower than I like to see (360), but the doctor said that was actually better than he expected at this point. We are still only a couple of weeks into this, though. It seems like he started treatment months ago, but it was only three weeks. This is going to be the longest three months of my life.

Max is still doing very well emotionally. He is also getting very good at play-acting taking blood. Who knows. Maybe he will be a doctor some day. Given the hours that his doctors work, I am not sure if that would be a good thing, or a bad thing. :)

WBC: 6.0
Hematocrit: 28.7
Hemoglobin: 10.5
Platelets: 15
ANC: 360

CBC 11/09/2006

WBC: 7.4
Hematocrit: 31
Hemoglobin: 11
Platelets: 65
ANC: 440

We are heading in for more platelets on Monday.

Max did really well when the nurse accessed his port today. He said he was going to cry, but only pretend cried, and sat perfectly still. This is better than I did when I got my flu shot today.

The Bookmobile came today. They have added us to their rounds. What a wonderful service. The weather was gorgeous so Max rode his bike, too. We had a good day.

CBC 11/6/06 and update

Max went to MGH for a clinic visit today. They have been having trouble getting a cyclosporene level that they are comfortable with. It keeps coming back low. So, Dr. Ebb wanted to do it at the clinic and did a CBC while he was there (of course). They were assuming his platelets would be in the teens or lower, but they were happily surprised to find out that they were at 21. However, he decided to transfuse anyway as Max would probably have needed a transfusion by tomorrow or Wed at the latest and seeing as we were there, we did it. I am not sure how I felt about that, but I have to say that the idea of driving back down tomorrow did not appeal.

Max did well with the transfusion, but got a few hives afterwards again. They gave him Benadryl again, and they went away, but this is worrying me.

He is getting used to being accessed through his portacath. He still isn't excited about it, but is getting much better at sitting still for it. As he got used to getting accessed through his arm and also taking his medicine (which he is wonderful about now), I think it will not take much longer before he is used to the portocath.

CBC Results:
WBC: 8.4
HCT: 32.4
HGB: 11.7
PLT: 21
ANC: 170

Dr. Ebb was happy to see the platelets, white count, and hematocrit numbers. However, the ANC level was an unhappy surprise. After last weeks rise, 170 was very disapointing to me.

The plan for the week is to have another nurse's visit on Thurs and then either transfuse platelets on Friday or Monday depending on the results.

Happy Boy

I wanted to post a picture of Max so that everyone could see how good he is doing. He is definitely struggling a bit emotionally, but he is enjoying life and was thrilled when he got to go out exploring today. He put on his sunglasses so his "eyes won't be bright" and packed his backpack and was ready to go.

We are heading to MGH tomorrow morning. I will update in the evening.

Run run run and enjoy the weather!

I have figured out that the best thing for Max and for me right now is to get him running around. He has so much energy and it has to be burned off. Today is the last day of the full dose of steriods. Hopefully, he will be a little bit less amped up next week. Today, we played "there are dinosaurs in the house.... run!" which involved a lot of shrieking and running around. It was actually a lot of fun. Apparently we were very loud, though, because there were police investigating something next door (long and not too pleasant story) and one came over to make sure we were okay. He took one look at us, though, and said "Oh, I have kids, sorry to bother you" without even saying why he was there first. Later on, Max and I played soccer in the backyard. These bursts of energy really seem to help him mellow out later, though the energy is always back with a vengence. He is happy, though, and that is a very good thing.

CBC - 11/02/03

I fell asleep last night when putting Max to bed and forgot to update the blog. :)

His nurses visit went fairly well, though he hasn't really gotten used to getting accessed through the portacath and wanted her to take blood from his arm. But, I think he will get used to it fairly soon. It is much faster and easier than the old way to draw blood. His counts were pretty good. No need to transfuse right now, though they want us to come to the clinic on Monday to check him out, and expect to transfuse platelets then.

Platelets: 81
Hematocrit: 35
Hemoglobin: 12.0
WBC: 10.1
ANC: 700

Things are pretty good. Max is definitely moody and hyper from the steriods, which is difficult for us. Imagine all that lovely three year old behavior; tantrums, sudden mood swings, crying over the tiniest things, etc., multiplied about 10 times. Then, imagine a child who literally can not stop moving. He has kind of been beating on us physically because he is bouncing off the walls. That actually makes things sound a lot worse than they are, though. He is generally happy. We have been playing outside a lot to burn off that extra energy, and he is doing better than expected. His body is going through platelets slower than they thought it would (they expected transfusions every 3-5 days and he has needed them more like every 7-8), his red count has been holding fairly steadily, and his white count is actually up, thanks primarily to the steriods. So, we are pretty happy with things.

Playing outside has been very important. He hasn't been napping much, but if we run around outside, he is more likely to nap. There also are less sharp corners outside, so I am a bit more relaxed. We went to the Cranberry bogs on Wed and met another family and picked cranberries and he had a ton of fun. Yesterday, we just ran around in the backyard. Thank goodness it only rained in the morning. I will take them to the park today, I think. The change of scene is good for me, too.