Tuesday, November 30, 2010

Still No News

 We are waiting to hear from the Hem/Onc nurse about Brian's counts. Yesterday morning I took him to the Pediatric Lab to get his blood drawn. After that we headed down to get X-rays that Brian has to do periodically to check for Histio involvement. I'm not a Radiologist but from what I saw it looked good except for the mouth area. :) We knew that anyway. Brian is scheduled to have oral surgery next week, but if his counts don't improve we will have to postpone it. I am just waiting to hear back from the clinic after the doctor has a chance to review yesterday's tests. I will let you all know what's up when we know. Thanks for praying for Brian.

Friday, November 26, 2010

Keep Praying

 On Tuesday we had Brian's blood work done to check his counts. The results came back on Wednesday and his counts were even lower than the previous Friday. We took him back this morning and the lab was closed. We ended up going downstairs to the diagnostic center (all of this is at the hospital) and it was a disaster. Poor Brian was poked several times and the lady fished around in his arm with the needle but never got blood. If Brian needs blood work that they don't get from his port we typically put some Lidocaine cream on him so he doesn't feel the prick. When the lady fished in the numb arm it wasn't too bad. When she moved over to the arm that didn't have cream Brian screamed. The lady was getting ready to move down to Brian's hand/wrist to fish around there and Mommy called a halt. Mommy said we were not going to keep "trying" but we would come back on Monday and go to the lab. Thank you very much. Mommy should have immediately protested as soon as she recognized the nurse as the women being trained in the lab on Tuesday. It was this lady's first week at Sacred Heart. Everybody needs time to learn and get comfortable, but little Brian will not be anybody's testing ground. He goes through so much already. Anytime we can minimize some stress and discomfort we do. So, Monday we will go back and see our lady, Miss Jean, at the Pediatric Lab. We will keep you posted.

These are old pictures of Brian, but it gives you a peek at some of the places he frequents at Nemours. They try to make it as cheery as possible.

The hematology/oncology clinic has a play area in the back near the infusion rooms. No children except patients have access to this area. It's different than the waiting room.

This picture is just adorable. This is from Brian's birthday in August. Grandma Hayes gave Brian a HUGE Woody doll and the Woody PJ's he is wearing. I included this picture because it shows what our Brian normally looks like. The steroids and chemo have made Brian look huge and swollen. It's sad to look at him now because he just looks like a sick child to us. This is our BB...

Sunday, November 21, 2010

Some pictures of Brian

Here are some pictures of Brian at the hospital on Friday. He didn't have chemo on Friday but he had an hour long infusion of the drug Pentamidine. He doesn't understand that he didn't have chemo because they accessed his port. That is the bad part for Brian. He hates getting accessed. When you say chemo Brian thinks getting his port accessed. So whether he gets chemo drugs or not is completely irrelevant to him if his port is accessed. We are switching over to oral chemo drugs but we will still have to go the clinic once a month for Brian to get his port flushed and his Pentamidine infusion.

Brian's favorite part of the infusion. It says COMPLETE!

Brian's counts are low

Please pray for Brian as his counts are low. He was suppose to start his oral chemo drugs this past Friday (two days ago) but was unable to because of his low ANC level. He is considered Neutropenic. You can read HERE  about Neutropenia. Brian's counts are suppose to be above 500 to be able to receive chemo and his counts were at 480. We will go in on Tuesday morning for more blood work to check his counts and see if he will be able to start his oral chemo drugs this coming Friday. Until Tuesday Brian is to stay at home and we aren't to have people over. We were told that our normal home germs are OK, but new germs are dangerous.
    Brian is home bound and watching movies. Really he has been home bound for the last seven weeks. Brian hasn't wanted to go anywhere. If we were to go anywhere, even really quickly he would be asking to go home and whining about being tired within ten minutes of leaving the house. I took all four through the drive thru pharmacy to pick up some meds a few weeks back and Brian was crying to go home. He didn't even have to walk anywhere or do anything but the activity of getting in the car and driving there was too much for him. His little body has been so tired all the time. We think the steroid was causing his extreme tiredness and weakness. Now that Brian has weaned off the steroid (this past Thursday was his last dose, but he has been taking a tapering dose the past two weeks) he has had more energy and is actually doing things! He and William are playing and interacting (and fighting!) again. William LOVES having his buddy back. While he is still limited in his activity and can't really run or move too quickly he has improved. The last couple of months Brian has literally not done anything other than watch TV, SLEEP! or have books read to him. Coloring made him too tired. Now, he at least will sit and play Lego's or color with William. He still strains to bend over and looks pained to step up on the stool to brush his teeth, but he is trying to move around more rather than just sit on the couch. It's slow moving. Please keep praying.
   Brian's oral surgery has been scheduled for December 7. We will keep you posted. Thanks for praying for Brian Robert.

Wednesday, November 17, 2010

Pray for Brian

The chemo drug Vinblastine can cause constipation. Well, Brian has suffered with that on and off the last week and a half. His stomach got so bloated that he looked like a starved orphan in a third world country. We've been giving him Miralax and straight apple juice and he was going potty but this morning he was doubled over in pain and sweating. He kept complaining and crying so we took him to the hospital. He got some X rays and an Ultrasound done which revealed that Brian had an insane amount of gas in his abdomen. He is constipated and backed up. Every time he breaths he is taking in more air and it's just not coming out.  I will try to post the X-ray picture. It was kinda cool. Of course it wasn't cool for Brian because he could feel the balloon ball of gas in there! We are still giving him LOTS of Miralax trying to work the stuff out of his system.

The gray area on the right that is kinda shaped like a potatoe is a big ball of gas!

Thursday, November 11, 2010

Catching Up

The last month or so of our life has been out of control. There are so many things going on (things not even directly related to Brian's illness) that cause stress and  make life difficult. I will not share all on this blog but the long and short of it is pray for the Schreiber family!
We have called for reinforcements and Fred's mom has been here a week and will be here for three more weeks. It has been so nice to not have to exasperate all our friends to help us or to have to pay for child care. It has been such a wonderful blessing to be able to just go and do something without having to plan childcare. Fred and I have enjoyed being able to do something by ourselves too. Even if it is just go grab Starbucks really quickly. (THANK YOU, Aarin, for the generous gift card!!) I have been able to catch up on doctors appointments for myself that have been put off due to having so many children so close together. In the last week I have been able to get my teeth cleaned, get four of six cavities filled and go to the girl doctor for my yearly. (Apparently you can brush your teeth too hard and brush the enamel right off. I have done that. It's really not cool.) I am feeling some sadness for what Brian is about to go through in the next couple of weeks because as I sit here and type I have a numb tongue and cheek all the way up to my nose. Of course Brian's oral stuff is more involved, but I remember last year when he woke up from having his two year old molars removed he didn't understand why his entire mouth was numb. He kept rubbing his face like he was trying to get something off of it. Well, here we go again. He has to have his one year old molars removed in the next couple of weeks. The bone loss in his mouth makes the gums recede because there is no bone for them to adhere to, thus exposing the entire tooth. When Brian has all four molars removed the doctor will do a biopsy of the tissue in the gums to check for the presence of LCH. Something to praise God for in all of the this is that last year when he had the two year old molars removed we were told that Brian might not get the permanent molars that would grow in after the two year old ones because they bud off of baby teeth. Well, when we had Brian's X rays last week we saw three of the four permanent molars growing under the gums. The fourth one could be there but we didn't see it because it was a bad picture. After Brian gets his one year old  molars removed next week he will have NO molars to chew with until the six year molars come in. It's kinda sad to think about looking into his mouth and eight of his teeth be missing but in the big picture this is so minor. 
  Just to give you a peek into some of the stress involved with things like this let me tell you about one of the most stressful aspects. Dealing with insurance. I spent two hours and a couple of days on the phone getting our oral surgeon authorized as an in network doctor since our insurance doesn't have one in the area. Then we had to get our medical insurance to authorize payment to the oral surgeon's office since this surgery is a result of a medical condition. After getting all that worked out, the oral surgeons office let me know they don't work with Blue Cross Blue Shield and we will be paying for the entire surgery out of our pocket in advance and then file a claim with Blue Cross ourselves. Now, it's just the oral surgeon's office, not the hospital and anesthesia so it will only be a little over $1000. Not too major, but given that we currently deal with Sacred Heart, Nemours, Anesthesia, the hematologist/oncologist, the pediatric dentist, the pediatrician, labs and the offices of whatever specialist we are currently dealing with, we are not in favor of having our money out there to be held and then returned to us four to six weeks later. 
 This is all just for Brian. In the past six weeks Fred has had two procedures for his back. So that has costs $$ too. PLUS, I have had my doctors appointments and mouth fixed up. I also need to have surgery in the next few weeks to repair some damage from when Ansley was born. All this info is just to give you a peek into how stressful the Schreiber house is right now. So, if we haven't called you back or responded to an e-mail hopefully you see it is not about you. :) 
I'll leave you with a picture of William and Brian. This is Brian's permanent spot when he is awake. He and William like to watch the show Dino Dan on Nick Jr. They are probably watching it in this picture. (Don't worry the boys have been told that the world is not millions of years old and dinosaurs are not millions of years old.)

Aunt Carol, notice that both boys have their blankets you made them as newborns. They are still very special blankies that we can't live without.

Monday, November 1, 2010

Life is Crazy!

Well, Brian's compromised immune system means that when he got the throw up virus he held onto it for 11 days. We spent several hours at the hospital a week ago getting Brian some fluids, an antibiotic and a prescription for Zofran to help him out.
Add to that some side effects from the Vinblastine and we've had some really rough weeks. Brian's latest side effect is that he has really weak legs. He is falling alot and then has a hard time pulling himself up.

ok...life calls. more later.