Gabriela's rainbow picture is displayed behind Captain Starlight on TV :-)
Tuesday 30 September 2008
Thursday 25 September 2008
Thursday 18 September 2008
Saturday 13 September 2008
Friday 5 September 2008
Blog: September 2008
We have had a wonderful weekend here together as a family in Melbourne
We spent ALL day at the hospital on Thursday, just waiting, waiting, waiting …
The full results of Rafael’s’ tests weren’t back. It was decided to plan for going ahead with his Stem Cell harvest on Monday. This involved him having an increased does of GCSF to increase stem cell production to twice a day and a stronger dose. We were booked to go in on Monday morning.
Qantas managed to “get” me for a Perth 04:55 start!!! It was a good day, long, but fun. Just after I got home, our consultant Dr Heath called to say that the trephine (bony part of the marrow) was still NOT clear of neuroblastoma. Therefore, the harvest is postponed and the 4th round of chemo will commence on Monday instead. So now we are 2 weeks behind schedule, but it should not make a “huge” difference.
He explained to us that sometimes it take more rounds of chemo for the trephine to be clear before they can harvest stem cells. We were ok with that, as it had been explained to us since the beginning.
However … that night, a head nurse called us to go through the procedure for the Stem Cell harvest on Monday. I told her that Dr Heath had already called us and cancelled it. When I told her that, she replied “Oh, I am so sorry to hear that” and again, at the end of our conversation, she again said that she was sorry!! She upset me SO much! Until then, I was ok, a bit down, but ok with everything, yet her few words sounded to me like it meant bad news :-( :-(
I can’t do much until tomorrow when I can speak to her again and the hospital to find out what it all means??
Anyway, Rafael will be in hospital for a minimum of 5 days this week :-( If anyone feels like visiting, please do – it can be such a lonely place a times :-(
24th September 2008
Rafael’s Bone Marrow Aspirate went ok (ish) yesterday. He was with Domingos and I spoke to him before the procedure. The first thing he said to me was “I didn’t have any breakfast!” Poor little guy …
He woke unsettled again and was quickly given something to send him back to sleep. Thankfully there was no thrashing about this time and he did not bleed excessively.
The anaesthetist seems to think that he just wakes up too quickly and is in pain, dizzy etc. Therefore, they have to make sure he wakes up very slowly.
He was enjoying a banana on the way home and just before arriving managed to vomit all over himself and the car :-(
He is quite sore today and very hesitant to walk or sit. He spent the afternoon at Nanna’s watching Nick Jr. – he loves it :-)
Also, Rafael has a new girlfriend!!! He told me tonight that he is in love with Hannah Montana :-) I bought him the new Miley Cyrus c.d. as he loves the song “See You Again”. Now he is asking me to play it over and over and over …..
The cute thing is that Gabriela doesn’t even know who Hannah Montana is (and she should, being a young girl and all). Yet Rafael knows the show and the characters and the songs … TOO cute :-)
Off to hospital again in the morning to get some results and find out “where to next??”
xxx
After waiting 2 hours to see Dr Heath, we finally managed to “pin him down” and ask lot's of questions.
Rafael's platelets are still too low to start round 4.
His last Bone Marrow Aspirate came back a little inconclusive as one of the trephines did not work; they only got bone, no marrow. There was a chance to just go ahead with the stem cell rescue anyway, but thankfully Dr Heath has decided to repeat the tests again on Tuesday. Poor Rafael :-(
I won't be there this time as I am in LA at the moment, enjoying my last trip and squeezing in too much shopping! I hope that with Domingos there, Rafael might not get so stressed when he wakes up.
We had a good talk with Dr Heath about Rafael's surgery, which will be after round 6. We have decided to go with a private surgeon, thus ensuring we have the “best person” and not some “juniorling” that the hospital decides on the day. It is a training hospital after all. It also means that the surgeon will get involved now and follow Rafael's progress and have a clear understanding of his tumour activity.
The process for extracting stem cells is quite complicated and a miracle to modern medicine. To cut a long story short – it's a bit like kidney dialysis in that Rafael is connected to a machine that pumps his blood through a machine that then sorts out the parts, keeps the stem cells and puts the rest of the blood back. He will need blood transfusions at the same time to keep up the volume. If things go well this week, he will be given higher doses of GCSF which we will need to inject twice a day. That increases the stem cell production and he will probably have the harvest next week.
It sounds like everyone had a great weekend. They went to 2 parties as well as meeting their cousins from England
xxx
17th September 2008
HAPPY BIRTHDAY DADDY XXXXXXXXXXXXXXX (and Vovo and Uncle Graham)
Rafael’s platelet count on Monday was too low (33) for him to start his 4th round of chemotherapy this week.
Also, the complete Bone Marrow test results were not back.
Therefore, we are off to see Dr Heath again on Friday and hear where to go from there. Maybe start on Friday or hold off until Monday?
We have had a fun week of playing with Lela and drawing and watching TV. We even managed to get to the Dentist for a check up :-)
Good news – Rafael is going to Kindy tomorrow :-) :-) :-) Yeah!!!!
ps: Captain Starlight told us that Rafael was the ONLY child in the entire hospital that Sportacus visited in their room :-)
xxx
14th September 2008
Last night we celebrated Domingos birthday with a surprise party!! It was a well kept secret and he had NO idea at all. Thank you so much to everyone who came. It was so much fun to laugh and chat with other people after the last few months of “isolation”.
The children all seemed to have a great time too and even the Melbourne
We were able to have a sleep in on Sunday and Domingos managed to have an afternoon nap as well. Gabriela is on school holidays now for 3 weeks.
We are all of to the hospital in the morning and Gabriela will be able to go to the Starlight Room while we await the Dr’s review of Rafael :-)
xxx
12th September 2008
Rafael had a Dr appointment on Wednesday to check if his blood counts were ok to have the Bone Marrow Aspiration on Thursday. All was ok, except his platelets (again!). So what was meant to be a quick visit to the hospital turned into the usually LONG day. He had another platelet transfusion and he did really well. He was happy and playing with toys and eating a little.
While there, I received a phone call from Challenge, inviting me to the “Mother’s Retreat” this weekend in Torquay. What a decision??? Spend the weekend away having facials, manicures, massages etc – or spend the weekend with my beautiful family before I go to HKG on Sunday night?????? If I do the trip (my ear is still blocked), it means that Domingos will be spending Monday and Tuesday at the hospital with Rafael on his own. It just isn’t the right time, even though I would LOVE to go L Hopefully next time….
My leave at half pay has finally been approved J That takes me to the end of January off :-)
Gabriela had her first school performance on Wednesday night and Rafael really enjoyed going along and watching our little “lizard” perform
Rafael’s Bone Marrow Aspiration didn’t go so well again. Not as bad, but not good either :-( I took Mum along this time for some support. Amy, the play therapist spent about an hour with Rafa, playing games and talking to him about the procedure and generally just trying to make his visits to hospital “more fun”
The anaesthetist called us in and promptly “undid” all of the good work by forcing Rafael to have the gas mask. He has never had it before and I had to hold his arms while another person held his legs. Poor little guy, he didn’t understand WHAT was going on!
They gave him a drug to wake up very slowly from the anaesthetic and it took about an hour. He woke up a bit grumpy, but seemed ok. But the more he woke up, the madder he got. The Dr said we could take him home as he was alert and coherent, then he started throwing things around and getting very agitated and there blood all over the bed (again!). When we managed to finally calm him down enough, they asked us to take him for a walk around the hospital in his stroller to get some food then come back to check on the bleeding.
When we arrived back at Day surgery, the Haematologist who had done the BM aspirate was encouraging us to take Rafael home as he seemed ok and in day surgery, there isn’t really anywhere to “treat” patients. I got Rafael to stand up so he could check the dressings and the back of his pants was covered in blood!! I said “oh, that doesn’t look good!”
In the end the oncology nurse did a really good job of applying a strong pressure bandage and finally the bleeding was under control and Rafael was much calmer and we were able to go home (with extra bandages, just in case ..)
The Haematologist actually called on Friday (twice) to check up on Rafael. They don’t know why he is bleeding like this after the procedure. It could be a combination of low platelets and his thrashing about :-( Poor little guy.
He bounced right back and was fine by the time we got home. He even rang Daddy to make sure he was bringing home some Pao (bread) to eat.
7th September 2008
Happy Father’s Day!!!
Mingo and Rafa managed to finally get home from hospital at 3pm and we were able to start celebrating Father’s Day. Rafael is the perfect child, he promptly went to the fridge and got Daddy a beer J Gabriela was excited too to give Daddy the gifts she had bought him from school.
Mind you, it might have been easier to end the Cold War or navigate the withdrawal of troops from a war zone than it is to actually get Rafael OUT of hospital! He was meant to be out by 1pm , the nurse said she would try to make it happen, but things didn’t go so easily. Rafael needed another platelet transfusion before leaving, as well as finishing off his antibiotics. He already had a blood transfusion the day before. At least he was in a good mood this visit. He was even out of bed throwing a pair of socks at Daddy to amuse himself. His blood counts are slowly going up.
Yesterday the star of Lazy Town
We are all sick now :-(
I went to LA last weekend not feeling the best and have gone downhill, my right ear is completely blocked at the moment.
It hit Domingos on Saturday and he spent a few days in bed, before heading into hospital on Monday for a full day of tests on Rafael. They had to be there at 8:30 for bloods, then an echocardiogram, then an appointment with a Dr for review. After that Rafael had a kidney function test where they took blood at intervals. In the end, they didn’t get home until 5pm!!
I arrived on Tuesday morning and between us, we made a very sorry pair of parents :-( Both too shattered and sick to look after Rafael between us. Thankfully he seemed ok, just a little cough and runny nose.
By yesterday morning, Rafael had a fever of 39 and was complaining of an ear ache. He was bound to catch it L:-( I was the “least sick” of the 2 of us, so I took him in to emergency. Rafael and I were both feeling the effects of this flu so much that we both slept on his bed in emergency for 4 hours!! Nurses came and gave a platelet transfusion, as well as antibiotics and we hardly heard them. When we both finally managed to “get up” at 2pm, the nurse commented that we both looked better!! Finally got a room upstairs at 6pm!
Rafael’s platelets were VERY low, just 10 and he has 0 neutrophils (white blood cells). Poor little guy, no wonder he couldn’t fight of our germs :-( We feel so bad that we have passed this onto him, but as the Dr said, he cannot live in a plastic bubble.
I slept at the hospital last night with Rafael and by 8pm we were both asleep. Rafael woke up at 9am this morning! He was asking for breakfast and his fever has broken. If all goes well, he might be home on Sunday??
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