What is next for Chiane
Good evening everyone.Happy New Year to you all…
We had time to think how we are going to move forward. It is very complicated and the decisions got more difficult because of events that took place over the last 2 weeks.
1. We are free to go where we want
2. Do Thiotepa
The cancer is very strong and aggressive now due to the radiotherapy and 7 chemo’s…. It’s MUCH MUCH stronger and aggressive as its now radiated and “immune against chemo”.
We spoke to The Burzynski clinic and the cancer is now too “fast growing” for them to do anything. Based on the growth pattern this cancer has shown, it’s too aggressive for the Burzynski clinic to help… For them to help, Chiane needs 6 months at least. This cancer growth rate doesn’t allow for that. So… We need more time and we don’t have time. Great Ormond street said we are free to go..
We need to buy more time if we want her to be treated in the States. Thiotepa is the only HIGH DOSE aggressive chemo that can POSSIBLY push this cancer back… And buy us time to go to the States.
Only 50% of children receiving Thiotepa survive the chemo, that’s how lethal it is. When children start on Thiotepa they must be in top form. It wipes out the platelets for at least 8 weeks; the bone marrow and her blood counts. Children receiving Thiotepa die because of infections caused after Thiotepa or bleeding to death as they can’t stop the bleeding once children start bleeding (they have zero platelets). Thiotepa “eats away” at the skin and gut, causing bleeding and if it happens it’s usually over. The slightest build up of body fluids or sweat can cause her to start bleeding or have infections.
Chiane will be in a lot of pain if we go ahead, as all the skin will come off the pressure points like her palms, feet, elbows, bum and her back. Mouth sores, sore gut. She won’t be able to eat for a long time. Her skin will be “hyper sensitive” to touching. We were hoping to put Chiane in a ‘medical coma’ for 6 weeks, for when she wakes up she won’t remember it (if she survives the Thiotepa) but we can’t do that either. And a medical coma is out of the question and I will explain that in a minute.
If we don’t go ahead with Thiotepa Chiane might not see the end of March this year, that is how aggressive her cancer now is.
If we go ahead with Thiotepa, she will either not see her birthday end of January or she will survive Thiotepa and we have at least 6-7 months to go to the states to receive the treatment at the Burzynski clinic. The only thing that can push this cancer back now, is Thiotepa to buy us time, but it’s very very very lethal to say the least.
To complicate things further we have a HUGE problem that could have been avoided.
Chiane is on anti seizure medication after she had seizures in October. It’s called “Phenytoin”. It is a temporary medication and children should not be on it for too long!!! The “whining down time” / the time it takes to come off Phenytoin is 5 weeks… she came off it which caused Chiane to start having seizures again. Coming off Phenytoin is complicated. So Chiane was back in hospital and came out this morning. We can’t do it over 5 weeks. Because, if we take 5 weeks to take her off Phenytoin to start Thiotepa the cancer will be too far and Thiotepa won’t work anymore… The cancer will be too far and giving Thiotepa will put her through hell for nothing.
To complicate things further, on the 28th of December Chiane got Shingles. I know it’s an adult illness but it’s known to happen to children that have either HIV or cancer. She was in hospital until the 2nd of January, came home and then started getting seizures, so we were back in hospital the next day until this morning. The shingles “blisters” are on her head and they are not bursting. This in itself is a problem, because Thiotepa will break her skin further….We are in a very very very bad position now.
1. The cancer is more aggressive, because it’s now immune against the previous chemo’s and it’s radiated and therefore much stronger.
2. Thiotepa causes her to bleed and the skin to break, and wipes out the immune system…. Chiane has shingles and it caused her skin to burst open, so if we start Thiotepa now, she will be in danger of dying of the viral infection and bleeding to her skin that’s already open.
3. We can’t give her Thiotepa as she is on Phenytoin and they had to slow down the time she has to come off it (2 weeks was too quick). They idea is to get her off it in 3 weeks which can lead to more seizures… But if we wait 5 weeks to come off Phenytoin as per medical guideline, it will be too late for her to receive Thiotepa as the cancer will be too far…
What I am trying to say is, should we go ahead with Thiotepa – Chiane is in a very very bad position right now because of the state and circumstances she is in. If we don’t do Thiotepa, she will only see a few more months.
To complicate things even more…this cancer is so aggressive now she will need to go through Thiotepa TWICE, not once… for this lethal chemo to push the cancer back far enough to buy us time to go to the Burzynski clinic…it’s a huge huge huge gamble….
We asked Great Ormond street why she can’t be on Phenytoin while receiving Thiotepa…their pharmaceutical department will find out why she can’t be on both at the same time. We have 3 weeks to start Thiotepa. If we don’t it is game over. That’s our window period.
So what now you may ask? We had a meeting today at great Ormond Street Hospital and we are moving forwards as soon as we can.
While we wait to find out the above…
1. We are boosting Chiane with everything we got. We have done research and more research and more research the week before Christmas. We know what we have to do to give her the best shot to survive the chemo, but the fact that she is still on Phenytoin and has shingles is a big problem and set back.
2. We have installed an industrial Air purifier at home that is big enough to cope with a shopping centre… We requested that we want to install it in her room which will kill anything in the air. It means she will breathe in only clean air.
3. Chiane will be isolation for atleast 8 weeks while going through the Thiotepa treatment which means no visitors. Only staff allowed in her room will be staff that is completely healthy… If a staff member has a cold, her room will be a no go zone.
4. We can’t put Chiane in a medical coma as we will have to bath her only in water at least 4 times a day and 1 time during the night, every night for 8 weeks. This is to wash off the Thiotepa coming through her pores eating away at her skin.
5. She will wear new clothes every time after she has a bath.
6. Mouth hygiene will be very very important because of sores she will get in her mouth.
7. We will use a special cream after each bath and cover her whole body with it to keep her skin moist and prevent it from bursting. This cream is a very expensive and a complex formula which doesn’t “block” her pores.
8. The balance will be tricky between keeping her skin moist, but at the same prevent the chemo to “build up” between certain areas like any folds (behind the knee and in front of the elbow, her thighs, under her arm pits, under her chin and neck etc etc.)
9. diarrhoea – this will be caused by Thiotepa and we will use another cream to protect her bum from burning as the chemo coming out will be stronger than through her pores.The list is endless….
We will move her whole wardrobe to the hospital as she will go through a lot of clothes and we will take out the purifier at home and install her purifier at hospital. We decided today to go ahead based on the answer Great Ormond street regarding Thiotepa and Phenytoin.
We sat today and talked to Chiane for the first time since we got the bad news re her cancer still showing on her MRI at the end of December. It’s important that we are honest with her. She needs to trust us and not loose faith in us. If she 100% on board it will be better for her and us. We explained the badies are getting much stronger and the real big fight is only starting now. We explained that the chemo will cause her a lot of pain, so much so that we won’t even be able to touch her skin as it will hurt and burn when we touch her…. That her skin will be hyper sensitive but that we will need to bath her 4 times a day and once a night, and cover her in cream which will hurt… Not the cream but the contact of our hands on her skin. We explained that we will need to replace her bedding during the night while we bath her and wear new clothes everytime she baths. We told her she will be in hospital for at least 6-8 weeks, isolated and her mouth will hurt more than anything she ever felt. We spoke about the diarrhoea and said it will hurt a lot. We then explained to her the bleeding and skin that can peal off. We explained everything to her. If we don’t do the Thiotepa that she will probably be with her granddad in heaven soon, if we do Thiotepa she might eve be there sooner or she will make it through Thiotepa that will buy us time to go to the Burzynski clinic.(Although we made up our mind what we want to do, we didn’t tell her at first… We asked her what she wants to do if she can choose). Her answer was and I am quoting: “if we don’t do it, this will be my last winter, and I will only have one more spring, possibly another summer but not another autum either…if we do it I might not even make it through the winter”? We stated that what she said is correct so we knew she understood… She then continued saying “but if I make it through this chemo we will have time to go to America and see if the doctor can help me?”… We said yes… She then said “well we have nothing to lose then do we, I want to fight and daddy you did say a time will come at the end when we will have to fight harder, so I want to fight my cancer”.
Fight it is. She knows the risks as much as a 5 year old can understand about it.
We have a lot of complicated situations to overcome in a very short period of time. Suddenly, the next 3 weeks will determine if she will have a fighting chance or if it’s all over. If all goes well and we make progress with controlling her Seizures, medications and the Shingles we will jump out of the blocks and run… If we can’t find solutions we stop. Suddenly, 3 weeks is a short time. It might be long for normal people in a normal day… But to us, the clock is ticking and we work around the clock starting tonight to fix her for this chemo. If we don’t succeed we miss the window period and it’s over, we stop.
How is Chiane doing? In all honesty, she has took a big knock with this switched over medication and seizures, the shingles has hit her hard too. The cancer is starting to have an effect on her – her right leg is now permanent “pins and needles” and she is starting to lose her feeling in that leg. Her right eye lid is hanging half, she can only open her right eye half way and she is SUPER sensitive to ANY light. We live in darkness at home. Even the TV is set as dark as possible. Her spirit is through the roof though and she feels good in herself. The good news is she has gained weight 1.3kg which is very good! Our target was 500g a week and she is just under that after 3 weeks. She is very tired tonight as we had a long day but she will send updates and photos tonight.We are standing strong and it’s not over yet. Our feet is cemented in our faith.
I kindly ask everyone that is helping with fund raising to push as hard as you can please. We will do EVERYTHING in our power to get her through this chemo… If we succeed and it’s the Lords will, we will be on a plane in 10 weeks, when her bloods have recovered. We have 10 weeks to get the funds in…
But most importantly, we ask that you pray with us…