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Tuesday, April 25, 2006 9:07 PM CDT
We went to clinic today and everything on the MIBG, CT, and MRI looked good. This means he is still NED (no evidence of disease). It appeared from the CT and MRI that he has iron overload in his liver. The oncologist think this is because of all the blood transfusions he had during treatment. The leisions that still appear on the MRI are even smaller this time. The chest CT still shows some air in a few areas which they are not concerned about. The MIBG stated normal scan. The echo (new this time) was not back yet.
We are now going to a new scan schedule of every 6 months instead of 3. We also don't go back to see the oncologist until October at scan time. I don't know how I feel about this yet. It makes me very happy not to have to put him thru the tests and procedures but on the other hand it's nice to know everything is ok.
On May 21st it will be 2 years since Eric was diagnosed. Thank you to everyone who has prayed for Eric these past 2 years. Dave and I really appreciate your thoughtfulness.
Thursday, April 20, 2006 7:35 PM CDT
Eric had his CT and MRI yesterday and MIBG and ECHO today. This afternoon he started running his usual post MRI fever of 102+. I think I have narrowed it down to the MRI IV contrast as the problem. I have a renal and oncology researching it. He has also complained of his eyes hurting. Everyone I discussed this with yesterday responded as "that's odd". So we will see. When I e-mail oncology about fever I also asked about the scan results and here is her response "Only good news on the scans! Things look lovely". So needless to say we are very relieved once again. We will have an office visit on Tuesday for offical results. In the mean time feel free to say a prayer of thanksgiving for us.
Thursday, January 26, 2006 7:38 PM CST
I know Shelley has already sent a couple email out but I thought I would give everyone a update as well.
On Tuesday Eric developed a fever with his stomach bug and had not peeded all day. When I touched base with the pediatricians office they wanted us to go to the ER. I had a neighbor (Carol Ann) pick up Kayla. I was franticly getting packed when Carol Ann came with Kayla. She so sweet to volunteer to keep Kayla until Dave or my Mom could get her. Mom was already on her way over and Dave was finishing work to meet me at the ER. So Eric and I headed to the ER. We arrived at 3:30. The lobby was packed. When we got to triage his fever was 104.1. When we got to an ER room they took blood and started IV fluids. His HGB was 10.9, platelets were 240, BUN was 68 and creatinine as 2.9. This indicated he was indeed dehydrated as the pediatrician expected and why we were sent to ER to begin with. It was also decided he would get antibiotics. Dave and I agreed to the ceftazadine but said no to the timetin since that is not good for the ears or kidneys. The doctors said that was fair and we would add timetin if blood cultures showed anything or if wasn't any better on Wednesday. The hospital was full so we were told we would be staying the night in the ER (27 hours). I was very glad when they brought in another stretcher for me. A stretcher was much better than the straight chair sharing a stretcher with Eric. On Wednesday morning he seemed much more alert. His HGB was 10.1, platelets were 189, BUN was 56, and creainine was 2.4. He took a nap late afternoon and was much more normal. They still wanted to keep us for monitoring though. He did get sick when taking his afternoon meds so I was expecting to stay longer. This morning his HGB was 11.4, platelet were 160, BUN was 30, and creatinine was 1.5. Since he didn't have a fever on Wed or Thurs and his counts looked better they let us go today. I am a little nervous about his platelet drop from 240 to 160 but the doctors said it could be from a number of things. We have an ENT appointment for the fluid behind the ears tomorrow. Tuesday (1/31) he has his MRI/CT, clinic appointment on Thursday (2/2) and bone marrow aspiration on Friday (2/3). Please continue to pray that the Lord looks over him and all his tests come back clean. Thank you for keeping us in your prayers.
Thank you for all your prayers!
Shannon called to tell me not to worry about going to the hospital during
lunch today because they were going home! She was concerned this AM
because his blood counts (hemoglobin and platelets) were down again
yesterday, however since he has not had a fever in 24 hours and his
creatine had gotten a little better they would be going home. We'll keep
you posted on his progress!
Thank you!
Shannon ask that I send an email to let you know that Eric is in the
hospital.
Eric developed a fever yesterday which reached over 104. After receiving
some antibiotics and IV fluids last night he does seem to be better today.
Eric will however be in the hospital for a few days to continue the
antibiotics and monitor his creatine. His creatine is up again to 2.9
which indicates his kidney function has decreased since last week which
they think is due to his dehydration from a stomach bug!
Please keep Eric, Shannon and Dave in your prayers!
Monday, January 23, 2006 8:42 PM CST
Eric woke up early this morning with diarrhea and vomiting. He pretty much laid on the couch all day and slept. He did not eat anything all day. This afternoon I rescheduled his Tuesday morning dentist appointment. He was very happy about this since he does not like going to the dentist much. Then I called about his PM pediatrician appointment to see if we could get it moved up. After talking with the nurse and her consulting with the doctor it was decided we would see the pediatrician today instead of tomorrow with his new "junk". It is so nice to be able to call the pediatrician at 3:30 and still get in same day. Since he is not a normal kid Eric had a CBC done. His HGB was 12 (up from 10.7 on Thursday) and platelets were 325 (up from 275 on Thursday). Which is much better than two weeks ago (9.7 HGB). This is the first time his platelets have been over 300 in a year and 8 months. He still has fluid behind his ears so we will see the ENT on Friday. I scheduled that in December as a just in case since it took a month to get in. I was hopping since I was prepared I wouldn't need it. No such luck. Wednesday bone marrow is still up in the air since the cancer clinic nurse did not return my call from this morning.
When we were at the hospital on Thursday getting MIBG done I say another mom. Her son has Leukemia and had a bone marrow transplant about 100 days ago. He has been impatient with a fever for going on 3 weeks now. All the tests have been negative so far but still running fever every day. Please keep him in your prayers. His name is Chaise. He has a carepage with id of chaisewc if you would like to follow him. I met them at clinic last year.
I know many of you have asked me about Fatima. I found out last week that she passed away in November. Sorry for the delay in finding this information out.
Hope everyone is doing good. I will keep you posted on the rest of the week.
Thursday December 19
I am very happy to let you know that from what the oncologist can tell from the MIBG scan (it has not been finalized yet by radiologist) everything looks good. His bone marrow has to be rescheduled until next Wednesday since he has a runny nose and slight cough and cannot be sedated. His CT/MRI will still be January 31st since she didn't see at this time a need to move them up. For now we don't know why his legs would be hurting. I am thinking it may be the epogen or maybe he is finally growing again.
When talking with the doctor today, I was a little disappointed to hear that the kids have not done any better (3 year survival statistics) on the tandem transplant protocol that we were on than the single as once thought. In fact TCH will be changing protocols soon going back to a single with different induction chemo. Dave and I are still hoping and praying that Eric got all the bad stuff (hearing loss, kidney disease, ect) that he is going to be one of the long term survivors.
Please continue to keep Eric in your prayers. I will keep you posted on the other tests.
Thursday, December 1, 2005 7:31 PM CST
Today we went to clinic and all counts were good. Hemoglobin was 14.1 down a little since he has been 2 weeks with out procrit since it was on high side. Platelets were 208 in line with last time. Creatinine was 2.0 same as last time. Potassium was 4.7. I was really worried about this one since he has not been eating well. A lot of french fries and milk which are both high in potassium. So I was really excited it was still in the middle (high potassium is over 5.5). We go back in a month which is about when he is due for rescans. Evidently there was some confusion on when he was due and they have not been scheduled. Something about orders were written for December but requested for January or something. They are suppose to be the beginning of January. So I will be following up next week if I do not hear from the nurse.
Tuesday, November 29, 2005 0:11 AM CST
I took Eric to the pediatrician on Monday for follow up for his bronchitis. He was put on a nebulizer. We went again on Tuesday for check before leaving to go to the deer lease. I was being a little paranoid.
All went well on our trip (besides Kayla hitting Eric over the head with the rake which caused 2 puncture wounds and a quite a bit of bleeding). To say the least Eric had a much better Thanksgiving this year over last. He went deer hunting, played in the dirt. He followed cousin Josh and Loren around acting like he was as old as them.
Today Eric went to school, speech, and gymnastics. He is getting really good at doing a summersault and loves the "mountain" they get to play on at the end of class.
Eric goes back to clinic on Thursday for lab only. Hope everyone had a great Thanksgiving.
From : Friday, November 18, 2005 8:36 AM
I first was to say thank you to everyone. It was a year ago this morning (around 10:00 if I remember correctly) that Eric had his 2nd stem cell transplant. This means he is 1 year post transplant. They say that after 5 years the likely hood of relapse is much lower. So we have 4 more to go.
I want to thank all of you who have done so much for our family. The members of our Church (Epiphany) have been so wonderful. We could not ask to belong to a better church family. The meals that were prepared, help with parking, house cleaning, donations, ect. I apologize for being extremely late on some of the thank you notes. I am truly embarrassed that I have not been diligent about them. Your thoughts have not gone forgotten. I hope one day I can help the same way we have been helped. The prayers over the past year and half all over the US and outside the US, thank you so much. We are very thankful this Thanksgiving that Eric is doing so well and is home. We can handle the normal stuff that has been going on this month.
Yesterday I took Kayla to the pediatrician and she has the start of an ear infection and is on an antibiotic.
Today I took Eric to the doctor because he came home yesterday saying his ear hurt. His ear is still a little red from last weeks outer ear infection. He also had some "rattling" in his chest. So he is also on an antibiotic. He is suppose to stay inside and we go back to the doctor for a check on Monday just as a precaution before going out of town for Thanksgiving.
I also attached a picture of the kids. The first one was taken last weekend at the deer lease. The second was taken week before last in Hearne.
I hope everyone has a blessed and safe Thanksgiving.
Friday, November 18, 2005 8:39 PM CST
I first was to say thank you to everyone. It was a year ago this morning (around 10:00 if I remember correctly) that Eric had his 2nd stem cell transplant. This means he is 1 year post transplant. They say that after 5 years the likely hood of relapse is much lower. So we have 4 more to go.
I want to thank all of you who have done so much for our family. The members of our Church (Epiphany) have been so wonderful. We could not ask to belong to a better church family. The meals that were prepared, help with parking, house cleaning, donations, ect. I apologize for being extremely late on some of the thank you notes. I am truly embarrassed that I have not been diligent about them. Your thoughts have not gone forgotten. I hope one day I can help the same way we have been helped. The prayers over the past year and half all over the US and outside the US, thank you so much. We are very thankful this Thanksgiving that Eric is doing so well and is home. We can handle the normal stuff that has been going on this month.
Yesterday I took Kayla to the pediatrician and she has the start of an ear infection and is on an antibiotic.
Today I took Eric to the doctor because he came home yesterday saying his ear hurt. His ear is still a little red from last weeks outer ear infection. He also had some "rattling" in his chest. So he is also on an antibiotic. He is suppose to stay inside and we go back to the doctor for a check on Monday just as a precaution before going out of town for Thanksgiving.
I hope everyone has a blessed and safe Thanksgiving.
Tuesday, November 8, 2005 9:48 PM CST
Well if it's not one thing it's another. I am please though to say the issue is ears. Today I took Eric to TCH to have his hearing aid ear molds looked at and possible new ones made. Eric has had two new sets of ear molds taken since the end of August and they still keep squealing. So I wanted to see what TCH said in comparison to the school district. She started with the left ear. We tried the two pairs and she said they looked pretty good but she preferred to have the "hook" and not have a vent so he could have a better seal because of his hearing loss being so bad. Then we go to the right ear. It squealed no matter what. He had some wax in the way to make new impressions so she sent us over to ENT to have it removed. I was really pleased on how fast we were worked in and seen. They removed the huge piece of wax. She then said we have good news and bad. The good news was the wax was removed but the bad news was he had an external infection under the wax. She had to suction (he cried) the water out to aid with the healing process. So he cannot wear his right hearing aid for a week and we are putting antibiotic ear drops in for a week. We will then see if the wax was causing the squealing or if we have to get new molds once the ear heals.
Since Eric's HGB was so good last week they are decreasing his procrit dose. The only thing with this is the shot volume is more due to something with the strength. His PTH was also better so they are reducing his calcitrol dose to 3 time a week vs. everyday.
Eric had a really good weekend. Daddy went to the deer lease to take the camper and the kids and I went to Hearne with GiGi, Paw Paw, Aunt Shelley, Bradan, and Brennan. The kids really enjoyed playing together since they haven't seen each other much. Eric of course rode the 4 wheeler, the new Mule, and the tractor. We saw a snake which he talked about forever. We had to put a cow and calf in the pin and I was elected to give the calf a shot. Eric thought that was pretty cool. He loves going up to the country and being outside. He is really looking forward to going hunting with Daddy this year since he didn't get to last year.
Hope all is well with everyone. Have a great week and weekend.
Tuesday, November 8, 2005 8:57 PM CST
Friday, November 04, 2005 11:28 AM
Sorry for the late update. Eric went to clinic on Tuesday and everything looked great. His kidney function once again has improved now it is 2.0 vs. 2.4 from the last results from October (was 4.2 in May). EACH!!!!! This is really exciting for us since the renal doctors were hoping it wouldn't get worse and were hoping to be able to stay off dialysis for several months. Thank you for all the prayers. I think the Mannatech products (which the doctors did not recommend) and a lot of green tea is helping. His HGB was 14.2 so it sounds like his procrit/epogen will need to be reduced. Platelets were around 160. Hope everyone has a nice weekend.
Thursday, October 06, 2005 8:58 PM
Eric's MRI, CT, and MIBG scans came back and they all showed good results (no change since February or July). He will go back to clinic in 3 weeks for labs. Rescans will be in another 3 months. His fever has gone away and he is feeling good. Thank you to all who have kept us in your thoughts and prayers over the last year and 5 months. God is answering our prayers.
Tuesday, October 04, 2005 7:21 PM
Today we had an unexpected clinic visit. Eric went to school this morning but started feeling bad so I picked him up. He had 103.? temp. I called clinic and they wanted to see him. The original plan was to look at him and do blood work and send us home. His blood work showed indications of a bacterial infection so they ended up doing an antibiotic. After the antibiotics were complete they went to do the vitals so we could go home and his temp was 104.7. So we had to do some Tylenol and wait for the fever to go down a little. They were a little hesitant to let us go with that high of a fever but I assured them I would bring him in at any indication of getting worse. We have to go back tomorrow for MIBG injection anyway. His creatinine was 2.4 (up from 2.3), platelets 139 (down from 190), HGB was 13.?. We did get really GOOD news today. His CT and MRI were the same as February and July scans so they were good results. I will keep you posted on anything that happens to come up.
Saturday, October 01, 2005 7:58 PM
Just a quick update. Eric is doing good. He will have his CT and MRI on Monday afternoon. His MIBG injection will be Wednesday with the scan on Thursday. I am unsure when we go back and when we will get the results of everything. Please keep us in your prayers. This is always a very stressful time. THANKS
Sunday, September 25, 2005 5:28 PM
Eric had labs last Wednesday. I requested to go in a day early with the hurricane and good thing we did since they were closed on Thursday and Friday. I would have been worring about what his counts were. Everything look very good. Dave and I were very pleased about his creatinine level it was 2.3. Yes that is lower than what it has been in a very long time. It has been going from 2.6 to 3.0 so a 2.3 is great. Now the question becomes has the little bit of Mannatech (glyconutrients) products that I have been able to sneek in helped.
I hope everyone keep safe with the storm and if you left made it back safely. On Wednesday we went to Hearne (my mom and dad have some land a little house up there) and came back on Saturday. We had a some traffic but nothing compared to a lot of people.
Tuesday, September 20, 2005 9:17 PM
Eric is scheduled to go to clinic on Thursday. He seems to be doing well. When I called today to see if I could get his RX's, to have just in case Rita hits, they told me his calcium level is now normal. So we will be holding one of his meds for a week and then starting on a lower dose next week. We were having some issues last week with him not wanting to take his medicine. I think it was the introduction of the mannatech glyconutrients so I decided not to push the issue for now. He still really likes school.
On the neuroblastoma listserv I found out that on September 26 Chili's resturants will be donating 100% of their profits to St.Judes Children's Hospital. If you dine out you may want to consider going to Chilis on September 26 for a good cause. Here is a website link if you are interested in reading more about it. http://www.createapepper.com/.
Friday, September 09, 2005 8:20 AM
Yesterday we went to the cancer clinic for check up and everything looked good. His HGB was 13.4, Platelet 163, Creatinine 2.9, BUN 29, Potassium, 4.0. His liver panel was slightly high ALT 33 and GGT 25. I did start him on one of the Glyconutrients/Mannatech Supplements called Ambrotose last week. Since his creatinine was up a little (2.6-2.9) from last time but consistent with the last month we will continue the products and see what the labs show on Sept 22 before discontinuing or adding any new products. These are suppose to help with overall health and wellness but our doctors at Tx Children's have never used them before. They are suppose to only help and not hurt his kidney function per the Mannatech folks. He has a cold or something going on now. He had a fever or 102.8 last night and 100 this morning. His throat was a little red yesterday and had a little congestion and cough. Besides the "cold like symptoms" yesterday and today he has been feeling really well and loves going to school. He has been very interested in playing baseball and is hitting the ball really well. He has also been playing in the little pool we setup in the back yard. I hope all is well with everyone. I have attached a couple pictures of the kids.
Saturday, August 27, 2005 7:57 PM
All-
Eric's labs looked good on Thursday. His kidney function is stable at 2.6 which is great. His HGB was over 13 and his platelets were 180 something which is the best they have been since chemo. Things are going well. He still really likes his PPCD class and loves riding the bus. Kayla is also liking MDO at church on Tues and Thurs. I am enjoying my time with Kayla 3 mornings a week. I feel I haven't had any one on one time with her and she had been so good. I have also been trying to do more at the office to help Dave. I am hoping to work 8 hours a week now instead of 4. Eric has his renal (kidney) appointment on Tuesday. We will go back to cancer clinic 2 weeks from our Thursday appointment. He should be getting his new ear molds at the end of this week. (I did find the other old one so he does have 2 hearing aids now. YEAHH!!) I just pray everyday things continue to be "normal". Hope all is well with everyone. Once again thank you all for your continued support and caring.
Sunday, August 21, 2005 9:18 PM
I thought I would send a quick e-mail. Eric started school at Willbern Elementary last Monday. He is in the 8:10 - 11:10 PPCD program. He really seems to like school. There are 5 kids and 3 teachers in his class. He will start riding the bus in the morning. This was his choice and he is very excited about this. He got his FM system for school on Friday to help him hear the teacher. We are still working on getting the hearing aid thing working. The post office lost the new ear molds that we did 3 weeks ago. When we sent his "new" broken hearing aid back to the manufacture to be fixed the ear mold is now missing so he only has one hearing aid working until we get the new ear molds in two weeks. He has been complaining his tummy has been hurting off and on. So I e-mailed the doctor to see what she thinks. We have had a pretty busy 2 weeks doing fun stuff. Life seems much more normal now. Let's just pray it stays that way. We go back to cancer clinic on Thursday for lab only and have a renal appointment next Tuesday
Thursday, August 04, 2005 8:13 PM
Just a quick update. Eric is doing good. He has been playing in the inflatable pool I set up in the back yard. He has been loving the water. We had a relatively light week with appointments this week. It was ear week. He had an audiogram thru Cy-Fair on Tuesday and his hearing is much worse than it was in January/February. I spoke with his audiologist at TX Children's and scheduled an appointment for today. She confirmed what Cy-Fair said. Not that I was thinking it was wrong but trying to figure out what to do about this hearing aids. His hearing aids that we purchased in January are not powerful enough to help with his new loss. Thank the Lord the hearing aid company is working with us for full refund so we can get a pair that will help him for no additional charge. We have an appointment to pick up the new aids on Monday. No cancer clinic appointment this week. We had the week off. YEAHHH!!! Hope all is well with everyone and everyone has a good weekend.
Tuesday, July 19, 2005 9:11 PM
We went to clinic today and I am very happy to let everyone know that Eric got his PICC line out today. Since all his scans came back good we decided to take it out. Even though he will be getting his Epogen via a shot twice a week (Daddy will be doing this again) and will be getting a poke with blood draws every 10 days (instead of 7), Eric was very excited. He wants to go fishing with Daddy and Uncle Michael to catch a big shark, play in the sand at the beach, go swimming and take a real bath. His kidney function (creatinine) was 2.7 today. Which is down from the 3.3 last week. It is definitely bouncing around but at least staying in the low 3 and high 2 range and not going up. Eric also is going to VBS this week. He was a little hesitant on Monday and didn't stay so his cousin Bradan started today. They seemed to have a lot of fun. God is answering our prayers. Thanks to all of you who keep us in your daily prayers.
Sunday, July 17, 2005 9:07 PM
We had a busy week last week. I apologize for not sending this out before now but you will soon find out why.
On Monday Eric had an office visit for PACU clearance and his bone marrow aspiration. Tuesday we had speech and then I went to the office while Mom watched the kids. Wednesday we had an unexpected clinic visit, MRI, renal survey and Kayla a doctors appointment. Thursday unexpected clinic visit and then Mom, Shelley and I were able to make our 1:20 flight to Chicago for the Neuroblastoma conference which was Friday and Saturday. Daddy, Granny, and Loren watched the kids. Our flight arrived at 10:45 this morning.
Tuesday night Eric woke up around 10:30 pm screaming and after much crying we finally figured out it was his ear. I called the oncologist on call and luckily I got Dr. Killbern who I love and is very familiar with Eric. She felt he had an ear infection. She looked and the ER was packed so we agreed to give him some Tylenol and go to clinic before our MRI in the morning. I called Mom at 6:00 am to watch Kayla a little earlier than planned so we could go to clinic. Clinic confirmed it was an ear infection but could not tell whether it was inner and outer infection or just outer ear. They also could not tell if he ruptured his ear drum because all the infection. This is likely since he was so uncomfortable on Tuesday night. So they prescribed ear drops and oral antibiotic. Thursday morning he woke up with a fever. We suspected the fever was due to the ear infection but you never rule out line infection. So, when I called clinic they said to go in for blood cultures. Off to clinic we went. Boy was it a record day. We arrived at 7:30 and were on our way out the door at 9:30 and the oncologist in triage wasn't even in yet. It only took 2 hours and we got blood cultures, blood drawn for CBC, blood results back, IV antibiotic, and were seen by nurse practitioner. Of course this was because Shelly Wilke took care of us and she pushed us thru so I could make my flight. She is always so nice to deal with. When we got home Great Nanny was here to take us to the airport, Granny, Big Lou, and Loren were here to watch the kids, and Gee Gee and Aunt Shelley were ready to go to Chicago.
On Friday we found out that his MRI and bone marrow aspiration showed NO sign of disease and are very thankful for that. So as of now everything is going good.
As far as the conference goes. We learned a few things and met several other parents. This week Eric goes back for clinic appointment on Tuesday and we get the neuropsychological results back on Friday. He also has Vacation Bible School and Speech Therapy.
Tuesday, July 05, 2005 7:32 PM
We had a busy day today. Eric had speech therapy, school for a couple hours while I did invoices and then off to clinic. Boy was clinic busy today (due to the holiday). It was an hour before I even signed the papers to bill insurance and another hour for blood to be drawn. Needless to say our appointment was at 12:30 and we left just in time for 5:00 traffic.
Eric's creatinine was up a little but not to bad ( from 2.7 to 3.1). I guess at this point I will take anything below 4. His HGB was 13.2 and platelets were 139. He will have his renal bone survey on the 13th along with his MRI. July 11 (Monday) he will have his bone marrow aspiration. Bone marrow was rescheduled due to the holiday.
As far as last weeks test.....MIBG (like a bone scan) showed normal. Chest cat scan (CT) showed his PICC line (external line used for blood draws and medications) has migrated. So it is not where it should be but is not harming him. So we have a couple options. They can try to move it to get it in a better placement or remove it after the bone marrow and MRI results are in (when all shows good). If it is up to me I would like it removed so he can take a real bath, swim and go to the beach. So we will make the decision week after next. The CT also showed a very small something in the lungs. Evidently this was on the last CT also. Dr. Russell is not concerned about this since it is very small and has not changed since last CT. It is not normally where neuroblastoma (NB) would reoccur so this is also why she is not concerned.
We saw Fatima today. For MIBG scan from last week shows she still has disease in her legs. She relapsed in March and has tried several thing with little success. She was admitted again today for more chemo. Please keep her and her family in your prayers.
Wednesday, June 29, 2005 7:15 PM
Today we had Eric's chest CT and MIBG injection for the MIBG scan that will be tomorrow. We were unable to do the MRI today. When Eric woke up this morning (everyone else was asleep) he helped himself to some milk and could not be sedated. It is rescheduled for July 13. This was the earliest appointment they had because of the holiday. Eric's bone marrow aspiration has also been reschedule from the 6th to the 11th due to the holiday. Eric will also have a Renal Osteodstrophy Survey done on July 6th. This is because the PTH level. Two weeks ago he had the PTH level checked and I had not heard anything about it so I asked last week and found out on Monday that his level was 171 (normal is 10-65). So, now his is on a new medication to control this which we will start tonight. The elevated PTH is due to his kidney function. I will keep everyone posted as the scan results come back. We should have the MIBG (like a bone scan to check for tumor) and the chest CT results on Tuesday when we go for our office visit. Hope all is well with everyone. Have a great 4th of July.
Friday, June 24, 2005 3:19 PM
We went to clinic yesterday and his creatinine was 2.7, HGB was 13.3 and platelets were 108. The creatinine was the same as last week which was good and the others had increased which was good also. Eric's rescans are scheduled for next Wednesday and Thursday and the bone marrow aspiration on July 6. Hope all is well with everyone.
Thursday, June 16, 2005 9:27 PM
After Monday I am very pleased to say Eric's creatinine was 2.6 today. Yes that is correct it was under 3 for the first time in about 2 months. We are praying this is a good sign and he is going to get better. His 24 hour urine collection we did yesterday so far shows a lot of protein which we already knew. His HGB was 12.9 and platelets were 82. His potassium was on the low end of normal at 3.8. Overall everything looked better today. Keep those prayers going they must be working.
Tuesday, June 14, 2005 9:30 PM
We went to renal clinic Monday, speech therapy yesterday, speech therapy today, school today and will go to cancer clinic tomorrow.
Yes that is right Eric got the go ahead to go to summer school. Of course they are signed up for Tuesday and Thursday so realistically he will be going on Tuesdays since Thursdays are clinic days. He had a really good day and seemed to enjoy school.
We did not get very great news from the renal doctor yesterday. She said they are still diagnosing him with chronic kidney failure/radiation nephritis. They say scaring in the biopsy. She calculated his kidney function to be 18-20%. He will most likely need dialysis at 10%. When I ask if he could function like this a couple years her response was she hopes he go a couple of months. That was very depressing to Dave and I to think we may be on dialysis before the end of the year. After thinking about this today I have realized I should be very grateful that it is kidney failure and not relapse. I should be thanking God since kidney failure is a life altering problem not life threatning.
He has been very active and feeling good. He had a good weekend in Hearne. Daddy, Eric and Kayla went Friday afternoon and I went Saturday after the Lemonade Stand at SHRP. Of course Eric loved helping Daddy and Paw Paw cut brush and move the deer feeder. Not to mention he loved riding the tractor and 4 wheeler. He is my little outdoors guy.
Thursday, June 09, 2005 9:49 PM
We went to clinic today. His creatinine was 3.5 a little higher than Saturday but much better than 4.2 last week. His HGB is back over 12. It dropped a little after surgery. His platelets have dropped a little to the 80's from 100 from Saturday after his platelets from surgery. His potassium and sodium counts were in normal range.
The oncologist answered questions about biopsy results as best they could. From what it sounds like his kidney failure is drug induced. Either chemo, accutane, or radiation. They originally diagnosed as radiation nephritis. Being drug related it sounds like it confirms the diagnosis but may not be radiation persay. I have a few more questions about that and should have more answers on Monday when we see renal.
Dr. Russell would like to check labs once a week for a month and then go to once a month if everything is stable. He has his rescans on June 29th and 30. Bone marrow aspiration will follow but not scheduled yet. If all goes well we hope he can get his PICC line out after rescans. If this can be taken out he can go swimming and do all the "summer" activities we weren't able to do last year or this year. Uncle Michael and Daddy have promised him a fishing trip (he wants to catch a big shark) on Uncle Michael's boat once his line comes out. So that will be very exciting for him since he has never been on boat.
Hope all is well with everyone. Please keep Eric in your prayers that his kidneys continue to recover and his rescans are clear. Thank you to everyone for your support, encouragement and most of all the prayers over the past year (May 21, 2004 he was diagnosed). I know Eric is in God's hands and God does perform miracles.
Saturday, June 04, 2005 9:18 PM
We came home this afternoon. YEAHH!!!! Surgeon took him off PCA Morphine last night since he was sleeping so much. He was able to tolerate the pain very well. We walked around the floor several times this morning. He is still taking Tylenol but feeling ok. I need to make an appointment with kidney doctors for this week. They should have biopsy results on Tuesday. We follow up with cancer on Thursday. The surgeon did say they saw no visible scaring on the outside but the kidney doctor said that doesn't mean the inside isn't damages. So we will see what the pathology report says. Thank you for keeping us in your prayers. Oh and his creatinine was down to 3.0 (was 4.2 last week) yesterday.
Sunday, May 29, 2005 8:01 PM
Eric came home today. His potassium has been in the normal range since yesterday. I have to call on Tuesday to see when the surgeon wants us to come back. It should be Wednesday afternoon or Thursday morning. It makes me a little nervous not checking blood till then so we will see. He is feeling good though. We went to Wal-Mart this afternoon to get the kids new ridding toys. They both chose little 4 wheelers. His little Jeep was on it's last leg. Eric definitely earned his with all the brown yucky medicine (3 doses) he had to take. I figured it was only fair to get Kayla one also. Even she didn't have to say in the hospital and take medicine she was away from all of us for a couple days and she has been thru a lot. Not to mention she is potty trained now. YEAHHHH. Thank you for all the prayers and support. I will try to update everyone when I know more.
Tuesday, May 24, 2005 10:14 PM
Today we went to the renal doctors. Unfortunately we don't know anymore than we did yesterday. They did not do labs. We will go back to the cancer clinic next Thursday. Eric has been very active and in good spirits. Hope all is well with everyone. I will send an e-mail once we know more. Hope all is well with everyone.
Friday, May 20, 2005 4:56 PM
Thursday we went to clinic and Eric's HGB was 12 and platelets were 107 which were both good. His creatine is once again higher than ever at 3.7. They decreased one of his med and we will see what it is next week. On Tuesday we go to see the renal doctor for the first time since we were discharged.
Monday, May 16, 2005 3:25 PM
We made it back on Friday afternoon from our Disney trip. Everything went well. We had a good flight their and home. It was a little stressful but overall we had a good time. We stayed at a place called Give kids the World (GKTW) and it was wonderful. We had a 2 bedroom 2 bath cottage with kitchen and washer and dryer. They fed us breakfast and supper. We could get ice cream, ride the carousel, and train from 7:30 am to 9:00 pm. Some of the Disney characters came to GKTW which was very nice. Eric really liked meeting the characters. He also enjoyed our lunch one day with Winney the Pooh, Tigger, Piglet, and Eyeore. He old like when Barney, Mickey, Minnie and Santa came to GKTW. Santa brought presents. Eric chose an ESPN baseball and Kayla chose a white teddy bear. It's also appears he is going to love roller coasters. He cried one day because he could not ride a ride. It required you to be 54" to ride he is about 42". Eric goes back to clinic on Thursday for counts and office visit. Hope all is well with everyone.
Friday, May 06, 2005 9:42 PM
We received the go ahead to go on Eric's make a wish trip. YEAH!!!!!!!! A driver picks us up at 6:30 am tomorrow. Our plane leaves at 9:15. We will arrive back in houston on Friday around 3:00.
His creatine was 2.8 down from 3.2. His HGB was 10.9 and his plateletes were 73. The results of the other tests for his PTT/PT showed prolonged clotting but it was due to the Lupus antogen and thrombosis (may be miss spelled... Eric's book is already packed). Dr. Russell was not concerned about it and will recheck it in acouple of weeks. We don't have to go to clinic for 2 weeks. YEAH!!!!!
Tuesday, May 03, 2005 8:55 PM
We went to clinic today and his creatine is once again elevated. It was 3.2 higher than ever. Normal is 0.6 for him. So far they aren't going to do anything. We go back again on Thursday for lab check. Dr. Russell redid some blood work today that the lab lost from last week. This will check more about his clotting times (or at least that is my laymens interpretation). It is still prolonged. As of now we should still be able to go on our disney trip but the final decission will be made on Thursday. If we get togo to Disney we will have to get counts at a nearby clinic at least once and Thursday she will let us know if it will be twice. He may get plasma and platelets on Thursday dependent on what today's clotting tests show. She doesn't want him to have a nose bleed in the air with the air pressure and dry air. It is comforting to us to know if he is bleeding and it won't stop the pilot must land at the nearest airport. I know the other passengers won't like us to much. His platelets were 63 which is will above the 20 transfussion level but with the prolonged clotting it isn't the same as a 63. For those that don't know... there are 3 things that make your blood clot. One is the platelets, the other is plasma which are other enzymes in the blood and I forgot what the 3rd was. This was all new to me the other week. I have attached a couple pictures. Notice his hair. It's a little thin but pretty much grown back. Hope all is well with everyone
Monday, May 02, 2005 2:17 PM
Eric goes to clinic tomorrow. On Thursday his creatine (kidney function) went down a little to 2.8 down from the 3.1 on Tuesday. His blood pressure has been good. He had a good weekend. He has been very active and feeling good.
Tuesday, April 26, 2005 8:26 PM
We went to clinic today and his creatine (kidney function) has increased from 2.3 to 3.1. Since this is an unfavorable change we will be going back to clinic on Thursday for lab and office visit again. Once we get the results the cancer clinic will consult with the renal clinic/doctors as to what we do. On a good note his HGB was 11.2 which was about the same. His blood pressure has been under control with the medications he is on now. His platelets were 82 which is good but it is due to the transfusion from Friday. He is still having an increase in the clotting factors. They drew some extra blood for some additional testing today also. As of today I still have not been able to get the results of the renal scan from the other week. I hope to get this by Thursday. We are scheduled to go on our make a wish trip May 7 -13. The oncologist think this may still be possible but Dave and I are a little nervous. We hope to have good news this week and next to ease our anxiety. Eric has been feeling good and been very active and in good spirits. We pray for better creatine results on Thursday.
Friday, April 22, 2005 10:59 PM
Eric's platelets, HGB, and creatin were about the same yesterday as they were on Monday. However, we had an unexpected clinic visit today. Eric decided to climb the panty shelves to help himself to the instant oatmeal he wanted for breakfast after I told him it was not on his diet. Needless to say he fell and had a very bad bruise on his arm. His platelets were 31K (transfusion level is 20K) but his clotting factors were low so he got platelets and plasma. This was the first time he received plasma. I learned today that their are several components that allow the blood to clot and just because you have platelets doesn't mean your blood clots and that was the reason for his whelp. I have not received the results from the renal scan as the renal doctor was on service yesterday and was not able to answer my questions. I will try again on Monday. I will try to e-mail everyone soon.
Tuesday, April 19, 2005 8:32 PM
We came home last night from the hospital. His blood pressure has been a little high since we have been at home but I think our blood pressure cuff runs a little higher than the one at the hospital. At least it did when we tested it yesterday afternoon. He is very glad to be at home. He had a busy day. He stayed with GiGi's this morning, rode with Daddy this afternoon, and played out side when he got home with Kayla. We will be going back to clinic on Thursday for counts and office visit.
Oh.. he received a blood transfusion on Sunday which bumped his HGB from 7.2 to 11.?. His platelets were 34 on Sunday and Monday which was very good. His creatine increased from 2.2 to 2.4 (not so good). Overall it looks as though the epogin is working and he is stating to make more blood and is needing transfused less often. He also had a kidney test on Monday that I need to call and get the results on tomorrow.
We are praying that his counts continue to improve and that he regains his kidney function.
Thank you for all the prayers and support. It is a blessing to have so many people praying for us. God's blessings to all of you!!!.
Saturday, April 16, 2005 1:49 PM
Eric is still in the hospital. He is now on 3 blood pressure medications each twice a day at varying times, med to replace some stuff he is loosing, and one to promote red blood cell growth. He has a 4th BP med they give as needed. He has not needed the 4th med since Thursday night. He is also on a low sodium, low potassium, and fluid restricted diet. This has been very challenging to say the least since their food choices are very limited and he doesn't like the hospital food. His creatin has been staying around the 2.2 - 2.3 mark for the past several day and his diastolic blood pressure has been in the high 70 to high 80 which has been much better. His HGB is down and they don't want to transfuse because his retic is up which indicates his HGB is trying to recover. So because of this we cannot go home. They want to see what his HGB will do on it's own. He has been in good spirits but wants to go home. He did get the clearance to go on the hospital playground on Friday with Daddy. It sounded like he had a good time. I will try to get you posted. Hope all is well with everyone.
Saturday, April 09, 2005 12:29 PM
We came home last night. Eric's creatin level had a downward trend for 2 days. It was 1.8 on Friday morning. Down from 2.3 on Thursday. He is still needing his 2nd (as needed) blood pressure medication but they felt we could handle pressure checks and giving the medication at home. Since we have done this before. He will be going to the cancer clinic on Monday for count check and most likely blood and platelet transfusion. He seems to be feeling good and is very glad to be at home.
From what we have found out so far the oncologist think his kidney failure was kicked off by the acutane he has taking. They don't think it was the acutane itself but a combination of radiation, chemo, transplant and the acutane just aggravated it. Kidney failure is more common with the donor transplant but their are 10 kids in the world (I think Shelley's e-mail earlier said 10% which was my error) on this neuroblastoma protocol that have the same thing. All 10 have hearing loss and had just started or finished cycle 1 of acutane. Since this is such a small number of kids it's hard to tell. For the donor transplant (he received his own cells), at one point they thought it was the radiation since it stayed in your system for so long but it has never been proven. Many of these kids were not on acutane either.
Please continue to pray for Eric's kidneys to begin to function normally. Eric will not be able to continue his acutane. So we continue to pray all the cancer is gone and that is does not return. Due to his kidney's, he would be limited on any future treatments.
Saturday, April 02, 2005 9:49 PM
We found out this afternoon Eric will be having a kidney biopsy this week. Everything they have done so far is not giving them the answers so they are hoping this will. His creatin level also went back up today but they think it is because they gave him gentamiacin last night after he developed a fever and it is hard on the kidney's. It is also the antiobotic that can cause hearing loss. I will try to have someone send an update to everyone when we know more. I will be going back to the hospital tomorrow morning after church and will not have access to e-mail. God's blessing. Hopefull Eric will be on the road to recovery soon.
Saturday, April 02, 2005 9:03 AM
Eric is still in the hospital from Tuesday afternoon. He had an ultrasound and GFR Wednesday and will have an MRI Monday.
The ultrasound showed no change since the last one 2 weeks ago and no tumor. The blood flow to and round the kidney is fine. The GFR showed significant decrease in kidney function which correlates to the creatine increase. This means the problem appears to be microcellular. At this point they think this is due to the fever and possible virus (eg strep) or a slight possibility of the accutane. Since we stopped Accutane on March 10th and had fever on the 11th and noticed an increase in creatin when labs were drawn on the 14th. Due to a low HGB and platelets we were not able to get his MRI done yesterday so it has been rescheduled for Monday. This will be the last scheduled tests at this point. They have been doing a lot of blood tests that may not be back for a while. Last night he had a 101 temp that was starting when we started giving him his blood. He also had a little diarrhea also. I have not spoke to Dave yet this morning to see how his fever is doing.
He got a PIC line in his arm yesterday. Needless to say he is not happy about his PIC line. Our "attending" Oncologist wanted this since it may be awhile before he starts to maintain, needs blood draws every day, and is needing transfusions every other day. They don't like to do blood draws from the IV. They decided on a PIC in the upper arm since this is a more temporary solution and it can be removed bedside instead of going to the OR.
Eric's blood pressure is still elevated and he is needing his blood pressure medication more often. So, today they are changing his blood pressure medication to one that is more long acting. Yesterday his creatine level decreased again to 1.4. His normal level is .5 and the highest was 1.9. This was a good thing.
This has been a very stressful 2 weeks. I am very thankful for my family that has been so helpful and supportive. Dave has been getting his stuff done in the morning and coming to the hospital every afternoon as usual. My Mom has been watching Kayla and coming up to the hospital the days Kayla goes to school. As usually she came to our house yesterday to clean and do laundry Since her retirement in December she has had only had a couple of days to herself with all of our appointments and helping me pick up the kids from school so I can get caught up on all the stuff at the office and watching Shelley's kids 3 afternoons a week. My Grandma who has came over at 7:00 am to get Kayla on the days Mom goes to clinic with me. I thank God everyday for the help and support that we have. No to mention all of you who pray for us. Thank you for all the prayers. Please continue to pray that Eric has a speedy recovery and gets to come home soon. I hope all of you have a good week.
Thursday, March 24, 2005 4:39 PM
Eric's platelets were 35 today and his HGB was 9.?. He did not need any transfusions but will most likely need platelets Monday when we go back.
The bone marrow aspiration from Monday showed NO tumor cells, NO leukemia, a lot of white cells and new platelets and red blood cells. This means that we will have to wait until the cells mature and replenish to be able to maintain his counts. His counts are better than after transplant but may take some time to mature. The doctor said out of all the possibilities this was the better. He will not be able to start his accutane until he is able to maintain a platelet count of 70. Oh I almost forgot she still thinks this is because of a virus but the bone marrow virus cultures are still negative.
Thanks for all your prayers this week. Now we need to pray for those cell to mature and grow and a speedy recovery. Like with chemo, the more we stay on our accutane schedule the better and we should have started cycle 2 today.
Tuesday, March 22, 2005 7:47 PM
Yesterday Eric had his bone marrow aspiration. This did not go quite as planned. After arriving at clinic at 8:30 am we finally got a IV at 10:30. So, we headed over to PACU. We went thru sign in, waiting and then assessment. When they ask if he had been sick I told them he had a low grade temp on Friday and Saturday and vomited Sunday night 3 times. She said they normally don't sedate patients unless it had been 24 hours since vomiting. Needless to say after going back and forth the anesthesiologist decided to proceed in the OR with tube instead of in PACU where this is normally done. By this time it was around 3:00. Earlier they had started fluids since he had been NPO for so long. The anesthesiologist gave him some versed (??) and Dave carried him to the doors for OR. He was crying as we handed him off and had to leave. This should have been our first indication that something was wrong with the IV because the med usually makes him very "happy". We found out when the doctors came to talk to us that when they infused the propafall (??) he did not fall asleep as expected. So they undid the IV bandage to find the IV blew and all the meds were subcutaneous instead of in the vein. They wanted to admit us for observation. So, I came home to pack a bag and Eric and I stayed impatient last night and were finally release today at 2:00. His hand is still swollen. We are very thankful he did not have a reaction. They wanted us to stay incase the "sight" had a reaction/burn and/or the subcutaneous anesthesia caused him to be sleep for a long period of time. We should find out the results of the bone marrow Thursday when we go back to clinic and should be able to have an indication of how his counts are doing. I will try to update everyone Thursday. I hope everyone has blessed and happy Easter.
Friday, March 18, 2005 1:16 PM
Yesterday was a long day. We went to clinic for lab check at 8:30 and ended up leaving at 7:45. Eric's HGB was 8.1 and his platelets were 29. HGB was a transfusion level and platelets were not quite at transfusion level but since it was the week end we received both. Eric's creatin level was also elevated from Tuesday so we had to get a renal ultrasound done. The renal ultrasound showed everything to be ok. So they will be monitoring his kidney's and if it continues to be elevated we may need to have a GFR done. Eric will have a bone marrow aspiration and biopsy done on Monday. His doctor is still thinking this is due to a virus. She is going to do the biopsy to see if his bone marrow is adequate or not. If not he may have to get a stem cell boost. If it is adequate it will be a waiting game to see what happens. I will try to send an update on Monday. However, I may not know much since it will take a few days to get the bone marrow results back.
Thursday, June 16, 2005 10:22 PM CDT
After Monday I am very pleased to say Eric's creatinine was 2.6 today. Yes that is correct it was under 3 for the first time in about 2 months. We are praying this is a good sign and he is going to get better. His 24 hour urine collection we did yesterday so far shows a lot of protein which we already knew. His HGB was 12.9 and platelets were 82. His potassium was on the low end of normal at 3.8. Overall everything looked better today. Keep those prayers going they must be working.
Tuesday, June 14, 2005 10:21 PM CDT
We went to renal clinic Monday, speech therapy yesterday, speech therapy today, school today and will go to cancer clinic tomorrow.
Yes that is right Eric got the go ahead to go to summer school. Of course they are signed up for Tuesday and Thursday so realistically he will be going on Tuesdays since Thursdays are clinic days. He had a really good day and seemed to enjoy school.
We did not get very great news from the renal doctor yesterday. She said they are still diagnosing him with chronic kidney failure/radiation nephritis. They say scaring in the biopsy. She calculated his kidney function to be 18-20%. He will most likely need dialysis at 10%. When I ask if he could function like this a couple years her response was she hopes he go a couple of months. That was very depressing to Dave and I to think we may be on dialysis before the end of the year. After thinking about this today I have realized I should be very grateful that it is kidney failure and not relapse. I should be thanking God since kidney failure is a life altering problem not life threatning.
He has been very active and feeling good. He had a good weekend in Hearne. Daddy, Eric and Kayla went Friday afternoon and I went Saturday after the Lemonade Stand at SHRP. Of course Eric loved helping Daddy and Paw Paw cut brush and move the deer feeder. Not to mention he loved riding the tractor and 4 wheeler. He is my little outdoors guy.
Hope all is well with everyone.
Sunday, May 29, 2005 8:57 PM CDT
Eric came home today. His potassium has been in the normal range since yesterday. I have to call on Tuesday to see when the surgeon wants us to come back. It should be Wednesday afternoon or Thursday morning. It makes me a little nervous not checking blood till then so we will see. He is feeling good though. We went to Wal-Mart this afternoon to get the kids new ridding toys. They both chose little 4 wheelers. His little Jeep was on it's last leg. Eric definitely earned his with all the brown yucky medicine (3 doses) he had to take. I figured it was only fair to get Kayla one also. Even she didn't have to say in the hospital and take medicine she was away from all of us for a couple days and she has been thru a lot. Not to mention she is potty trained now. YEAHHHH. Thank you for all the prayers and support. I will try to update everyone when I know more.
Sunday, May 29, 2005 12:51 AM CDT
I wanted to let you all know that Eric is back in the hospital.
After Eric's visit with renal on Tuesday Shannon spoke with Oncology regarding her concerns with Eric's creatin levels going up and the fact that he did not have lab work done. Oncology requested they come in today and do labs. Today's labs revealed his potassium and creating levels are
elevated.
Evidently elevated potassium could have an impact on heart
function so Eric was admitted and is hooked up to a heart monitor. When I spoke with Shannon she said they were in triogue and were waiting to have a EKG that was ordered as STAT. I will let you know more soon. Please continue to keep Eric in your prayers.
Eric will be scheduled for a kidney biopsy on Thursday which will hopefully confirm a diagnosis for the kidney problems.
Thank you for all your love and support
Shelley
Monday, April 4, 2005 7:22 PM CDT
The news is not as good as we has hoped for but the doctors said it is not the worst news we've received.
Eric's kidneys are only functioning at 25%. This type of kidney failure is seen in less than 10% of the kids who undergo the type of stem cell transplant that Eric went through. Most of the kids who have kidney problems also have hearing loss.
The genomyecin Eric received each time he had a fever also has the side effect of hearing loss and loss of kidney function.
There is a chance the kidneys function will improve over time. If the kidney function decreases to 10% Eric will be put on dialyses until a kidney transplant could be performed. The doctors said Eric could survive with long term dialysis. Dialysis would be an inconvenience but could be used on a long term basis.
Eric will not continue the acutane treatments since the acutane can also have adverse affects on the kidneys and the doctors do not know if the acutane contributed to the kidney failure.
Due to his low blood and platelet counts they will NOT be doing the kidney biopsy tomorrow. They will continue to monitor and try to control Eric's blood pressure for the next week. If the blood pressure is under control Eric may be able to go home next Tuesday (another week).
Once released from the hospital Eric will be rotating both the Cancer and Renal (kidney) clinics at Texas Children's. Eric is making some new cells but not enough to maintain his blood counts. He will start getting a shot to boost his production of red blood cells and will continue to receive blood and platelet transfusions as needed to maintain his counts.
Eric will not be able to go back to school for a while and will need to drastically change his diet of chips, french fries, hot dogs, fish sticks. Eric's has been put on a low potassium diet due to the kidney problems and the levels of potassium in his blood.
Please keep Shannon, Dave, Eric and Kayla in your prayers, it looks like they have another long road ahead of them.
Thursday, February 17, 2005 7:15 PM CST
I have GOOD news. Eric's CT scan and bone scan came back NORMAL. We are going tomorrow to get the bone marrow aspiration and line removed. YEAH!!!! We will go back Thursday for the MIBG results and bone marrow results and should start acutane on Friday. Thank you to all the prayers. They are working.
Tuesday, February 15, 2005 8:41 PM CST
E-mail from 2/10/05:
Eric is doing good. We have had a good week. Today was Kayla's 2nd birthday so Saturday we had Kayla's party. Eric opened as many presents as Kayla did. I guess she was not opening them fast enough for him. She didn't seem to mind. Tuesday we went for counts and his counts were up. His HGB was over 11 and platelets were 99. Today my Mom, Eric, Kayla and I went to Woodlands mall and rode the carousel, the boat, ate and played for a while at the play ground. Eric did fall asleep while at the play ground area at the mall but Kayla had a blast. Mom and I were talking and cannot remember if she has ever done that before. I know it hadn't been in 9 months. It feels really good to do "normal stuff". Tomorrow the kids and I are going to Hearne with my parents. Dave went to the deer lease to get his stuff since the lease was not renewed. Eric is very excited about this. He wants to ride the 4 wheeler and tractor. Aunt Shelley, Bradan, and Brennan are also going so I am sure he is not going to let Aunt Shelley out of his site.
Please keep Eric in your prayers next week as he will have all his rescans. Tuesday is a CT and bone scan. Wednesday is his MIBG injection and Kayla's 2 yr check up. Thursday is the MIBG scan with office visit and count check. Friday is hopefully line removal and bone marrow aspiration. This will be a full week for us but we just keep praying for good news.
Saturday, January 15, 2005 6:59 AM CST
As many of you may have heard Eric was running a low grade of fever for about a week. Since the fever was continuing and this was a reason for his diagnosis the doctors agreed to perform a bone scan to assure Shannon that everything was alright. The scan would show if the Cancer was back.
Eric had his bone scan on Thursday and we got the results on Friday. The SCAN CAME BACK NORMAL. What GREAT news!! We are so excited and cannot say enough Thank You's to our heavenly father. We ask God to continue his miracle and keep Eric cancer free.
Eric was scheduled to have some other sans done in February as part of his regular follow-up. The scans will still be performed. If I recall correctly the scans are being peformed in the middle of February around Valentines day.
Another piece of good news is that Eric is now grafting which means he's producing his own cells and no longer needs blood transfusions. Becaus he is grafting, Eric is being released from the Bone Marrow Clinic and will be transfered back to the Cancer Clinic to continue his care. Shannon and Dave hace an appointment with his oncologist on Tuesday to dicuss next steps and questions.
Eric, Shannon, Kayla and did get to go to the Zoo on Wednesday. From what I heard they had a great time and fell asleep in the car before they left the zoo parking lot. Eric was interested in seeing the animals and move on while Kayla was more interested in chasing the birds and sticking around a while.
I was so glad to hear they got to go tto a fun place for a day. I pray that they can start leading a more normal life....
As always thank you for your prayers, love and support. Shannon and Dave really do appreciate it.
God's blessings to you all
Thursday, December 16, 2004 6:28 AM CST
I wanted to let everyone know that Eric is doing better every day. We stopped by last night and he played very big with the boys. I thought he looked really good and was in good spirits. I could tell he was feeling better when I walked in the door and told Bradan we needed to go to a doctors appointment and Eric started powing me and said no Bra-Bra stay and play with me. Eric was alright once I agreed we'd leave Brennan and eat dinner with them after the appointment since uncle Brannon is out of town all week.
Eric is still going to clinc 3 time a week and has not started creating his own platlets yet. He has received platlets on every clinic visit since his release. Yesterday he receive whole blood as well.
I know Shannon will be glad once he starts maintaining his blood counts. So far when he's received blood they've been at clinic fom 9:00 unitl around 3:00. I know it gets quite challenging entertaining him for that long!
Thursday, December 9, 2004 2:04 PM CST
I am so happy to let you all know that Eric came home from the hospital around noon yesterday. From what I've heard from Mom, Shannon and Nanny he hasn't bounced back nearly as well as he did during the last transplant.
He is happy to be home but is really not playing much. In fact yesterday morning he answered the phone at the hospital and it took a while to convenience him to let me talk to Shannon, he told me his mommy was busy packing for him to go home and she need to get dressed.
The doctors still seem to think that his decreased activity level is due to him being very tired from the total body radiation.
Eric will be going back on Friday for a clinic visit.
As always thank you for your Prayers, love and support!
Saturday, November 27, 2004 6:54 AM CST
As of yesterday afternoon Eric was still not feeling well. His symptoms are pretty much the same, his fever did go away on Wednesday nigh but was back yesterday.
When I visited on Wednesday the doctors said that what he is experiencing is normal. Shannon expressed how he seemed so much worse this time. The doctors ask what worse was, Shannon's response was his fever, the sores in his mouth, the vomiting which includes some blood, his irritability, and the duration of it all. The doctors said that they look at more than what she mentioned like his heart, lung, kidney, electrolytes, etc., all of which are stable and doing well. So in spite of it all the doctors are not concerned and said it typically takes 10-14 days for the mucasitus to start getting better. Today is day 9 so hopefully Eric will start feeling better soon. Eric is still sleeping a quite a bit during the day which is good.
Shannon was very tired from not getting much sleep so Dave is staying with Eric now. I know they had a rough Thursday night since the nurse refused to give Eric his fenegren which caused his stomach to hurt more. From what I understand he is now back on the fenegren.
Hope you all had a Happy Thanksgiving
God's Blessings to you all!
Monday, November 22, 2004 8:22 AM CST
Unfortunately Eric has not been feeling well the last few days. He was vomiting more on Saturday and is receiving fenegren and atavan to help relieve his symptoms and make him more comfortable. That in combination with the Tylenol for his Fever, morphine for his pain and Bendryl he receives with the blood products he is spending most of his days sleeping.
Eric developed a fever over the weekend and now has the sores in his GI track which can be very painful. For some reason he is complaining more about his stomach hurting that anything. They're not really sure if its from the sores or nausea. To alleviate his pain, he is on a morphine PCN pump. Since he slept most of the day yesterday Shannon said he was not terribly uncomfortable.
Shannon did come home about 8:00 Friday night (before all of Eric's symptoms started) to be with Kayla while Dave stayed at the hospital. She wanted to send an email out to everyone before she went back to the hospital yesterday but was having problems with her new Internet connection. I got a call from her about 9:00 last night asking to update everyone and ask for your prayers to help them get through this week. If history serves us well then hopefully this will only last a few days and by the end of this week he will start to feel much better.
Happy Thanksgiving and God's blessings to you All!
Shelley
Friday, November 19, 2004 6:38 AM CST
Wanted to let everyone know that Eric did very well with his transplant yesterday. During the last transplant Eric would not allow the nurses to connect him to the monitor, this time it was not a problem at all.
When I called at lunch time yesterday Mom said they were done and he was sleeping. The antinausia medication he receives makes him very sleepy.
Yesterday afternoon he and Shannon were playing in the playroom. Shannon sounded good and less tired.
Thank you all for your continued love and support.
God's Blessings and Happy Thanksgiving to you All!
Friday, November 12, 2004 6:30 AM CST
Eric is entering the hospital again this morning to begin his second bone marrow transplant.
He has been doing very well over the last week or so. He has been very active and keeping up with Bradan, Brennan and Kayla. We all had fun at Hearne last weekend riding the 4 wheeler and tractor and walking through the woods looking for deer with our dart guns. It was go great seeing the kids play together and NOT fighting. I think they've missed seeing each other so much that they focused on playing and having fun. By bedtime they were so tired that everyone was in bed by 8:30. Much to our surprise not having a nap Eric was the last to fall asleep. I was great for all of us!
Erics counts were so good during his clinic vist on Monday that he got the rest of the week off. We were all happy to hear that. Shannon got a chance to do some arronds with Kayla while Eric stayed with Gigi.
We pray that this transplant will go well and that it will help keep Erics' cancer away forever!
Thank you all for your continued support, Shannon often mentions how much she appreciates all the prayers, love, support, food, etc.
WE also thank God for his continued blessings!
Friday, November 5, 2004 9:49 AM CST
Shannon and I have not had much time to talk details this week but I did want to let everyone know that Eric is doing well with the radiation.
Eric is going under anastetic to receive the radiation and does wake up a little grumpy but is otherwise handling it very well.
From what I understand he should be readmitted into the hospital next Thursday November 11 for the in patient portion of his 2nd transplant.
Please keep Shannon, Dave, Eric and Kayla in your prayers during the next few weeks as they prepare to go back into the hospital for 3+ weeks.
So Far GOD has truely blessed us. When I stop to think about all that has happened thus far, we have been blessed and continue to see God's miracles happening in Eric's life.........A very successful surgery, last weeks infection clearing without having to undergo surgery to remove the line, last scan showed no signs of cancer.
Thank you all for your continued support and prayers.
Love and God's blessings to you all!
Shelley
Friday, October 29, 2004 5:16 PM CDT
Eric came home about noon today and is doing very well!!!!!
Eric was diagnosed with a bacterial infection in his line on Tuesday. This is what Shannon and Dave expected. The organizm was identified on Wednesday as a type of water bug, which typically results in the line being pulled. We are very thankful that Eric's line did not have to be pulled since the 2nd and 3rd blood cultures did not grow bacteria. Eric did come home on 2 antibiotics.
Shannon was told earlier in the week that Erics treatment (2nd transplant) would be delayed about a week, however the doctors indicated yesterday that he may be able to start his outpatient radiation as early as Monday.
Thank you for all your prayers love and support.
Once again God has truely blessed Eric!!! The infection could have been much worse!
Monday, October 25, 2004 1:16 PM CDT
Eric had been doing so well so I was very surprised to hear that Eric was back at the hospital yeterday.
Eric suddenly developed a fever yesterday morning while Shannon and Dave were getting ready for church. Gigi and Papa were on their way to Shannon and Dave's to watch the kids but were surprosed to find out about the sudden change in plans. Shannon, Dave and Eric were on their way to the hospital and Gigi and Papa would be babysitting Kayla.
Shannon is concerned that he has a fever with his ANC being over 2000. His ANC was 0 and had received blood transusuions with all of his previous readmissions for fever. Neither of which is true this time.
We should know a little more today. His blood was cultured yesterday to see if bacteria grows. Shannon and Dave both think he has a bacterial infection around his lines but that` has not been confirmed by the doctors at this point.
Eric DID have his radiology appointment this morning. At this point we are unsure if the next transplant will be delayed or not. Hopefully we will know more about that in the next day or so depending on what the diagnosis is and how quickly the fever goes away.
Please continue to keep Eric in your prayers!
God's Blessings to you all!
Shelley
Saturday, October 23, 2004 10:08 AM CDT
Eric had a MIBG scan on Thursday to see how the spots on his legs were doing for his radiation plan. I am very happy to let everyone know that the nurse told us on Friday that the scan showed everything looked normal at this point. We will go to MD Anderson on Monday to meet with the radiation team to begin his radiation for the second transplant. We will know more on Monday but from what I was told on Friday we should begin our outpatient radiation sometime at the end of this coming week and should be admitted on November 4th for our second transplant. If this happens we will receive our Chemotherapy on the 5th, 6th, and 7th. Total body radiation (TBI) will follow on the 8th, 9th, and 10th. Our transplant will occur on the 11th. So far his counts are maintaining without transfusions. He has been feeling good, very active, and eating a little more. Even thought he is eating a little more he is still on his TPN (nutrition).
Incase you are interested, Donna was able to upload some pictures of Eric and Kayla.
I am in the process of changing our Internet provider so please update your address book with our new e-mail address. It is schorlemmer@mail.ev1.net. If you have any problems with the address let me know.
God's Blessings,
Shannon, Dave, Eric, and Kayla
Sunday, October 17, 2004 9:14 PM CDT
Friday we went to clinic for a count check. His ANC (ability to fight infection) was a little low so he had to get a little boost from a GCSF shot Friday night. His hemoglobin and platelet counts were good. After our clinic visit we headed home to pick up Kayla and went to the Pumpkin Patch with Great Nanny and Great Paw Paw. Great Nanny and Great Paw Paw set it up so we were able to pick out our pumpkins and ride the train all by ourselves. Of course he liked the train ride the best and was very interested in the tractor that they had. After the Pumpkin Patch we went to Great Nanny and Great Paw Paw's and rode the tractor. During our clinic visit on Friday we were given the ok to travel a little further than our hour limit from the hospital. So, Saturday Dave, Eric, Kayla and I met Gee Gee and Paw Paw in Hearne. He had a really big afternoon. Sunday was even better since Aunt Shelley, Bradan, and Brennan came. He was so excited to see them. He had not seen the kids in over 2 months. They all played well and had a great time. We were outside the entire weekend. I think he enjoyed the outdoors after being cooped up in the hospital for so long. We are very thankful for being able to have a fun weekend and hope and pray we can have a couple more before our second transplant. Hope all is well with everyone. God Bless You!!
Thursday, October 14, 2004 9:50 PM CDT
We have been home almost a week and things are going good. We went to clinic on Sunday, Monday, Wednesday, and will be going back again tomorrow. On Wednesday he received platelets even though his counts were up. He was given platelets because he had a quite a few bruises. For those of you who know Eric he can be quite a rambunctious little boy when he is feeling good. So, in this case the bruises are a sign he is feeling better. I told the nurse he was a very active child and I think she is starting to believe me now. We are very thankful this has been the only transfusion he has needed since being released from the hospital. We took Eric and Kayla to get their pictures taken this afternoon and I hope to be able to post them to the Website when I get them back in 3 weeks. Hope all is well with everyone. God’s Blessings to everyone
Sat, Oct 9, 2004 10:00 PM CDT
We are very THANKFUL and HAPPY to let everyone know that Eric is HOME from his 1st stem cell transplant.... A week earlier than expected!
Although Eric is still not quite himself he had a pretty good week. The biggest obstacle faced this week was nose bleeds. The 1st nosebleeds was on Monday, it latest over an hour. If finally stopped when Eric received platelets. It was quite a scare for Shannon and Gigi. The other nosebleeds Eric has this week were not as severe and only lasted a few minutes.
Eric's platelets are still low so they will be going to the hospital on Sunday for a possible platelet transfusion. He will be able to go home even if platelets are necessary.
The level of his counts on Sunday will determine how often they will be going to clinic this week. He will go on Monday for sure to seethe doctor.
Eric was very happy to be home and see his sissy.
Provided there are no complications due to fevers, other illnesses, etc. Eric will be going back into the hospital the end of October or beginning of November for his 2nd stem cell transplant. I know Shannon and Dave are both looking forward to the next few weeks at home.
Gods' Blessings to you All.
Saturday, October 2, 2004 4:03 PM CDT
Eric was not feeling well yesterday due to his mouth sores a fever of over 104. Shannon said he was feeling better this morning. His fever did not go above 100 last night.
Eric did develop a cough but we are very thankful that the chest x-ray done last night showed that everything was fine.
Eric did have an ANC of 10 yesterday but it was back down to 0 this morning. The nurses and doctors said that was very normal.
Shannon was hopefull this morning that the worst is now behind them. She said yesterday was very stressfull and is hoping for a much better day today!
God's blessings to you all!
Thursday, September 30, 2004 6:28 AM CDT
A lot is happening this week.
Eric developed a fever late Sunday night and was feeling rater low and spening a lot of time on Mommy's lap Monday.
Thankfully Eric's fever was short lived and is now gone. Eric's still not up to his normal activity level but is spending some time in the hall and playroom. Shannon said he's even drinking some again (Mile, tea, etc) which is great news. He's still not eating but is receiving the TPN nutrition via IV. Dave mentioned he was retaining fluids and received medication to help with that. With the medication he has to stay fairly close to his room since he visits the potty frequently.
Eric received a whole blood transfusion over the weekend and platlets on Monday. Shannon said yesterday that he will be needing blood and platlets again in the next day or so.
After several phone calls I've been assured by the blood center that since Eric was named as a beneficiary the costs of his blood should be covered as long as we call and make a claim. Yesterday when Shannon and I discusses this we found that we've both been calling.
We would still like to encourage everyone that can give to give blood. It is important to ensure there is an adequate blood supply for all in need. Until we hear otherwise from blood center, I would recommend you naming someone other than Eric as beneficiary. If that person uses blood in the next year, their costs would be covered as well.
Eric's had a lot of Daddy time lately as Shannon was sent home from the hospital with a sore throat, headache and conjestion on Tuesday AM. I think Dave received her phone call at a bright and early 4:30 AM. Shannon has been at home but NOT resting. She's doing stuff at the office and at home getting ready for Eric to come home in two weeks.
Shannon went to the doctor and got some antibiotics and was feeling better yesterday. She was going to give it until today and go back to stay with Eric so Dave could work. We think Kayla is the culpret.....She's been sick as well and was with Shannon over the weekend. Gigi is now sick for the 2nd time in 2 months with the same symptoms. She went to the doctor yesterday and we're all hoping she's back on her feet soon to take care of Kayla. Great Nanny was called to the rescue once again....and will most likely help again today! I don't know what we'd do without grandparents.
Gods' blessings to you all and thank you for sigining the guest book.....It is throught the power of prayer that Eric will make a full recovery! We thank him that Eric is doing better than we all expected during th transplant and pray that he will continue to be with him, rid his body of cancer while keeping him free of infection!
Have a great week!
Shelley!
Monday, September 27, 2004 6:43 AM CDT
I spoke with Shannon about 4:00 yesterday (Sunday) afternoon and she was on her way back up to the hospital. They've been trying to work it out so that Dave spends the weekends at the hospital with Eric so Shannon can go home to spend some time with Kayla.
Dave said Eric was doing pretty well but has spent most of the weekend in his room. She said he was still playing but his activity level was slowing down. He is still getting sick in the mornings when he 1st wakes up. When I ask about his counts, they have bottomed out with his ANC being 0. It's now a waiting game until his counts come back up. Please continue to keep Eric in your prayers asking God to keep him strong and all infections away.
Thank you all for signing the guestbook. Provided I can get away from work today I am planning to go up for a short visit during lunch. I've printed out a copy for Shannon to read with Eric.
God's blessings to you all and Thank you so much for keeping Eric, Shannon, Dave and Kayla in your prayers ......
Wednesday, September 22, 2004 6:12 AM CDT
It is now 6 days into Eric's 1st transplant and he is doing well. He's now receiving his second type of chemo. The chemo he's on now he's received twice before. Like in the past, Eric is getting sick several times a day and is getting additional antinausa medications to help with that. The additional antinausa medications do make him sleepy so he's been sleeping seval hours a day which is a lot more than ususal.
I went up to visit Shannon and Eric last night and we spent most of the vist planning football in the hallway. He's been spending a lot of his time in the exercise/junk/playroom which has a basketball goal. From what I hear Gigi even shot some hoops yesterday!
In spite of all Eric is going through including the nausia, I was encouraged by how well he seemed. Mom agreed when I mentioned it to her......He was laughing and smiling a lot and was really enjoying playing and being a 4 year old boy. Granted he was not quite up to Erics usual activity level but not as far from it as I was expecting! I'm know he's been having good and bad moments throughout the day. I was so glad to see a good one!
Shannon has requested that I thank everone for their prayers and ask everyone to continue to pray for Eric as he reaches his lowest point later this week. We all know that through God all things are possible and it is through him that Eric will make a full recovery!
The doctors are expecting Eric's ANC to bottom out for 10-14 days. During normal chemo this typically lasts only 1 day. As of yesterday his ANC was only 400. (It must be 17,000 for him to typically receive chemo). It is during this time that Eric had histocially been rehospitalized due to fevers, bacterial infections etc. So we are especially hopeful that he will remain free of infection during this time.
I almost forgot to mention that Eric will be receiving his stem cells on Thursday......
Again, Thank you for all your Prayers, Love and Support during Erics Battle!
God's Blessings
Saturday, September 11, 2004 9:08 PM CDT
Eric was diagnosed with Neuroblastoma Cancer on May 21, 2002.
To date he has received 5 chemotheropy treatments and was rehospitalized due to a fever after 4 of the 5 treatments.
Eric's tumor was successfully removed on August 16, 2004. We were all very excited to hear that the surgy went so well. The tumor had reacted exactly as expected. Our prayers were truely answered by God. The doctors were able to save all of his organs including the pancrease, spleen, and kidneys. All of which were in questions when Eric went into what was expected to be a 6-8 hour surgery. After a short 3 hours the doctors had successfully removed the turmor clearing all margines. It was a miracle! We could not thank God enough for this wonderful news!
After surgery Eric stayed in the hospital for his 5th round of chemo. After going home for a short few days he as readmitted into the hospital with another fever. During the stay he developed sores in his GI track and a bacterial infection in his feses. This hospital stay was especially difficult for Shannon and Eric as Eric was in pain from the sores. Since the morphine was not very effective in the maximum dose, the doctors decided to administer the morphine in a smaller dose via pump which did provide additional comfort and allowed him to get some much needed rest.
After being released from the hospital on Septemver 8. 2004 Eric was very excited about the upcoming weekend in Hearne with Gigi and Papa.
After this weekend, Eric will be going back to the hospital on Thursday September 16, 2004 to begin the stem cell (bone marrow) transplant. It is expected that Eric will be in the hospital for 4 weeks. Please continue to keep Eric and Shannon in your prayers.
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