Rafael’s red cell count was borderline AGAIN!! 80 L At first, Dr Wood said we could go home and that Rafael didn’t need a transfusion. But then Dr Peter happened to be at the hospital and he said “hey, since you’re here …..” :-)
Therefore we stayed for a 3 hour, 200 ml transfusion. It finished just in time for me to go and pick up Gabriela from school :-)
Of course, Rafael was full of energy after his “red cordial” and Mingo said to tell Dr Peter that next time HE can look after Rafael afterwards – LOL Gotta love that red cordial :-) :-) :-)
Rafael’s white cell count today was through the roof!! The GCSF had kicked in nicely :-) Therefore, they were able to take 70 mls of blood to create his vaccine.
Afterwards, they wanted to do a blood transfusion, the one they have been putting off all week, but once again, the doctor said “no, come back on Monday” :-)
Rafael is fine though, a little pale, but no showing any signs of a low red cell count :-)
25th August 2009
Busy, busy ……..
We had to take Rafael to hospital on Saturday morning for another blood test and a blood transfusion. His test from Friday showed that he didn’t have any platelets and his red cell count was at 82, so since we were there …
However, he actually had a platelet count of 57 :-) Going up and a red cell count of 79 :-( Going down. They usually transfuse when the count drops below 80, so I was all set to spend the afternoon there. Then the doctor talked to Carla (nurse) and since Rafael wasn’t displaying any signs of low red cells – they let us go!!!!! :-) :-) :-) Have to keep an eye on him of course.
I was half expecting the hospital to call on Monday saying that we should bring him in! Dr Peter called on Monday night to arrange Rafael’s blood stimulant and collection.
Gabriela’s school held their book parade this morning, so Rafa and I went along too to watch. Rafael even decided to dress up as Ben 10 :-)
After that we headed into the hospital for Rafael to have a small needle placed under his skin on his leg and to collect 3 syringes of GCSF to stimulate his white cell production. He will now have another blood test on Friday and if the counts are ok, they will take about 60 mls of blood that day :-( I hope he’s ok, that’s a lot of blood for a little guy :-(
We also have the dates for his scans etc … another busy week ahead!
Originally they had booked a bone marrow aspirate and CT scan on the same day. I told Jane that if Rafael wakes up bad from the anaesthetic, then I don’t see how we could follow up with a CT!!
Now we have BMA on 1st September and a CT scan & GFR on 3rd September. Meeting with Peter will be on 10th September and all of those results will be ready then.
22nd August 2009
An interesting week spent emailing back and forth to Dr Peter about NK cells and tumour vaccines!!!
It is easier to insert his writing here:
Dear Tash and Dom,
There are no centres in Australia
I’ve spoken to Denise Caruso and we will need to get some more blood from Rafael to produce the vaccine; I’ll let you know later today when and how much we need.
Peter
And then Peter’s follow up:
Dear Tash and Dom,
I’ve spoken again with Denise Caruso; we need some more blood cells from Rafael – specifically the dendritic cells - to be able to make the vaccine properly. The cells that he has had taken previously haven’t been able to be stimulated. Is blood count last week was low – so if we were to try and get some, my feeling is that he would need G-CSF as a stimulant for 3-4 days before taking the blood, and depending on his count he would need around 60 mls taken. If the numbers etc are all OK it takes about another 2 weeks to make the vaccine. So we need to check his blood count again, and start some G-CSF to get these dendritic cells operating.
Peter
And then the surprise email about Rafael’s blood test from the ER last Saturday night:
Great; Hb is up to 107, neutrophils are up to 1.65, lymphocytes are down to 0.19 which is pretty low – and therefore his total white cell count is lower at 2.0, and platelets have dropped a bit more to 32,000. All in keeping with MIBG still – but if he has another count tomorrow or Monday I can look at it and hopefully get him started on the G CSF Monday or Tuesday.
Peter
So, Rafael had his blood tested again yesterday morning, but of course, I rang the hospital to check it and no one has called back L It looks like he might need a platelet transfusion soon if they go much lower than 32 :-( I was very shocked to see Rafael’s lymphocytes were so low. I’m not even sure they have ever been that low. And guess what lymphocytes are? – T cells and NK cells!!
You see, we are also asking Peter “if Rafael doesn’t have enough T and NK cells, how can the vaccine work properly”? Still waiting for an answer on that one :-)
We held our Biggest Aussie Pie Night last night to raise funds for Challenge. It was a great success :-) :-) My friend Jo has a pie maker and she kindly stood in the kitchen and produced pie after pie xxx 2 friends brought pies from the new Costco store that open this week – OMG they were divine!!! Macadamia pie – yum, apple pie – yum ….. Thanks again to everyone for coming along xxx
19th August 2009
A breakthrough??? Something to get excited about??? Who knows yet, but sounds VERY promising J J J
A family posted their good news this morning that their daughter who relapsed with NB in March this year now has totally clear scans after a new treatment at MSKCC in New York
I didn't know what NK cells were, so I searched and found that they are natural killer cells.
The NK cells, a type of white blood cell, must come from a patient's relative who shares half of his or her HLA proteins, which are immune proteins important in transplantation. Studies have shown that NK cells from a donor can be given safely and can be helpful in treating some diseases. These NK cells are collected from the donor and purified.
Her mother was the donor for the NK cells!!!!!!!!!!!!
It sounds so promising - and “simple” - could it be the breakthrough that's needed???
If more patients respond similarly – would we then consider going to NY??? Probably!!
16th August 2009
Friday's hospital visit went well. Gabriela has had a persistent cough all week and it is worse now, so she didn't go to school. It was quite funny as we had to explain to her that she was too sick to go to school and that also meant she couldn't go to the hospital!!! Ironic :-)
Rafael's blood counts had dropped again, but neutrophils were up a little. I'm in LA and don't have the number here, but platelets are ~ 65 now. He will have another blood test in 2 weeks to check.
We don't have a date yet, but in ~ 2 weeks, Rafael will have a CT and GFR - kidney function test. The future of his treatment plans is hinging on those 2 tests. CT will show if surgery is now an option and the GFR will help decide whether high dose chemo and stem cell transplant is still an option.
Rafael will also have another MIBG scan and possibly at PET scan in ~ 6 weeks at Peter Mac. MIBG scanning is a very unique tool in Neuroblastoma treatment as the tumour's LOVE MIBG and try to gobble it up!! Hence, doctors can see quite clearly on scans where there is active disease.
Peter Mac and Dr Peter are unsure if Rafael actually has NB in his L femur. Another possibility is that the MIBG scan detected that region as it could be fatty bone marrow redeveloping!!! Will see what next scan show.
Dr Peter also talked about the tumour vaccine Rafa will have at the end of his treatment. They don't do this much in the US as it's too expensive and time consuming due to the larger volume of patients (~600 per year are diagnosed). We are still trying to get to the bottom of doctors opinions whether it might be better to try for human antibody therapy (in
Gosh, how much our lives have changed in the last year??? We have words in vocabulary that we'd never heard of before and still can't pronounce some of them!! Who would have thought I'd be emailing doctors all over the world asking about Oncolytic viruses, CH14.18 antibodies, Fenretinide, Accutane, ALK inhibitors, gene testing ...... blah, blah!!! Welcome to MY world ;-))))
Part 2 : Gabriela after Camp - "Ruby was in my room", Mummy - "Oh, how is she, and what about her long hair?", Gabriela "Oh no, she got the same haircut as Uncle Micka"!!! Truly priceless!!! (Translation - Ruby has relapsed NB and is in treatment again. Micka is the Challenge coordinator at the hospital and he always goes on the camps and he has hair like Yul Brynner) :-))))))
When I arrived in LA this morning I had 2 texts from Mingo:-
1. Rafael has a fever and I had to take him to hospital
2. A few hours later - Rafael better, heading home, could be caused by the 2nd Flu vaccine Rafael had yesterday morning!!
Gee - you put one foot out the door and it all falls apart!!!! Thankfully Mingo's cousin was staying the night and he was able to keep Gabriela company. Unfortunately for Dom, he'd been at a party all afternoon and was not feeling the best to spend a few hours in the ER!!!
Anyway, I spoke to them all this morning and all seems fine. When Dom got home about
Tchau for now xxx
13th August 2009
Rafael and Gabriela had a great time at camp - thanks Challenge and your volunteers 
We didn't't drive down to pick them up this time and they came home on the bus. Rafael was first off and he was dressed as Ben 10, complete with face paint! It's the 1st time we've ever seen him dress up as he usually doesn't like to.
Gabriela told me that our little friend Ruby was in the same dorm as her, I was sad that we missed catching up with her family.
Have had a busy week, catching up with friends and trying to go to the gym (!!)
Today Rafael had a hearing appointment which I thought was to just adjust his R aide from the last visit. Anyway, Carina ended up doing the whole hearing test again. It is unchanged from June, but still shows that it's better than it was. I am attaching the graphs - 1 from today and the other from February. Carina's comments are only up to 4000 Hz as that is the end of speech range. You can see that Rafael's hearing in the very high frequency - 8000 is very low. I could hear the sound coming through his head phones, very clearly and he could not hear them at all 
I think I'll add them to the photo's section as these graphs are not too clear xxx
Tomorrow we have an appointment with Dr Peter. I have emailed him again with another list of questions about treatment options and scan dates.
He did contact us during the week to tell us the results of Rafa's urine test. There is a very simple test for neuroblastoma as the tumour excretes a substance that shows up high on urine tests. There is a lot of for and against having a standard screening for all children. Anyway, Dr Peter is happy with the result, even though it is slightly higher than last time. I will discuss this with him tomorrow.
I am off to LA on Saturday, so Domingos has the pleasure of going to 2 birthday parties over the weekend, as well as doing the gymnastics run and swimming run 
If I have time to update before I go, I will.
xxx
8th August 2009
Rafael was sooooooooo cute this morning, he woke up at 6:45am and got himself fully dressed, shoes and all and came downstairs to tell me that he was ready to go to Camp :-)))
7th August 2009
Wow, 1 week into August already!! Sorry for no updates!
I arrived home from LA on Tuesday morning and Rafael was already at kindergarten. I tried to sleep, but the phone rang, the doorbell rang and then the phone rang again :-( I picked up Rafael in the afternoon and then we picked up Lela from school.
We have been trying to contact the hospital since last Friday night to get Rafael’s blood test results, but they kept saying they didn't’t have them yet???
We caught up with Patrice and Ryan on Wednesday as Rafael was desperate to have a play and they have been away for 5 weeks :-) xxx
Yesterday, Domingos’ cousin arrived from Brasilia
Finally got to the bottom of the bloods saga yesterday. I went to the root of the problem – back to the nurse who collected the blood! They were VERY helpful and found that Rafael’s name had been misspelt on the form and that’s why they couldn’t find any computer records.
After that, I had 3 phone calls to tell me the results!!! As expected, his blood counts have dropped, but they are still at a level that he doesn’t need any transfusions :-). His neutrophils are only 0.96, so we are praying he doesn’t get any fevers!! Red cell (HB) = 90, Platelets = 65, WCC = 2.6. Urea was still up a bit = 7.4 and creatinine was good at 0.04 :-)
Rafael and Gabriela are off to Camp again tomorrow with Challenge. It looks like it’s going to be VERY cold and windy …. Bbbrrrrrrrr!!!
xxx
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