A lot more questions….
Good evening to you all.
We had a meeting today at Great Ormond street Hospital to discuss “the what now”. The plan was to submit Chiane tomorrow at GOSH for a few days. Not for treatment, but to address the platelet issue because we are just not winning the platelet battle count.
However, GOSH do not have any open beds at the moment. It’s been 9 weeks since her last Chemo and her platelets are just not going up. Instead of 2 Million CD34 Cell transplant, Chiane has been given 11 million of her own CD34 cells (which was harvest last year) to kick start her bloods, but still it had no effect on her platelet count. This is a big concern to us. It’s like gold dust and should have done the job but it didn’t!
If we do proceed with the 2nd round of High Dose Thiotepa (in Chiane’s current state) she won’t make the treatment (chances are extremely slim for her to survive the Thiotepa).
The first time she had High dose Thiotepa her gut was bleeding. The bleeding was not just 1 vein, it was every where in her gut. The only way to try and stop it was through platelet transfusion which did help to stop the bleeding. However, now it is a completely different story. Chiane is to a degree immune to platelets and a platelet transfusion will have very little effect to stop the gut from bleeding.
If we proceed with a 2nd round of Thiotepa, with Chiane’s situation as it is now, we will send her to her death bed. Her gut will bleed again like the first time, but platelet transfusion will not stop the bleeding and she will bleed to death.
So you might ask what now? How long will it take for her platelets to recover? That’s anyone’s guess but we do know we can’t proceed with Thiotepa right now. The 2nd challenge we are now faced with is that we missed the “window break period” between administrating the 2 rounds of chemo’s.
This means the Thiotepa will not have the effect we wanted it to achieve. Administrating Thiotepa only once is to a degree pointless, and to get the best possible results to push this cancer back, we have to do Thiotepa twice, with a very small window break between the 2. We have gone past the window period and as things stand right now, a 2nd round is not possible as her platelets have simply not recovered.
As far as protocol is concerned, we are completely off the map at the moment. Things did not go according to plan and as we hoped it would go.
We will be going back to GOSH as soon as a bed is avaiable to address solely the platelet problem, and not to continue treatment. Once we have won the platelet battle, we will review where we are (in terms of time scale and time line) and discuss if any further treatment is appropriate and if so, what treatment.
The first Thiotepa gave us an insight how things could be once she is 100% ok to have another round of thiotepa… After a 2nd round of Thiotepa it could take her body up to 2 years to recover…..(lots of questions and no answers)
In a perfect world it is both Thiotepa’s 6-8 weeks apart… But in reality it depends on the child and in Chiane’s case…right now, as we stand here it is not possible.
Once the platelets are under control, we will discuss what to do then. It could be anything from another week to months for her to recover. It’s been 9 weeks already and her platelets are just not recovering. We have a few options to address the platelet option.
1. CD34 cell transfusion to kick start it… Tried it and it didn’t work.
2. Platelet transfusions… Tried it and it didn’t work.
3. HLA matched Platelets. HLA match platelets are platelets that are a “as perfect as possible” platelet match for her body not to reject it. We tried it once, and 24 hours later we were told that it was decided “that HLA doesn’t work”. This is a expensive method of recieving platelets. We as parents felt not enough time were given to establish if this method works or not. After some research we established that you have to wait at least a month to carry out anti body platelet tests to establish if her body is attacking the platelets or not and establish if this option truly works or not. 24 hours after receiving the transfusion and then deciding that it’s not working is redicilious! We address it today. So, for now, we are continuing with this option after our meeting at GOSH today. Chiane will continue with HLA platelet transfusions tomorrow at our local hospital. Once a bed becomes avaiable at GOSH Chiane will become an inpatient at GOSH to do more in depth testing to resolve this issue.
4. If option 3 is not working, we will have to find a single donor that is a “as perfect match” and only use that one persons platelets (option 1-3 is platelets being used from various people). This option is once again, a very expensive option but on the table if we have to go down this route.
If all options above have failed, then we will cross the bridge at that point and time.
How is Chiane doing? Other than her platelet levels not recovering, she is doing extremely well! Eating is still a challenge but we are working on it. Her spirit is high, she is motivated, rested, positive and busy as any kid could be at home.
We don’t have any answers re future treatment right now until we can resolve the platelets. Time is now the main factor. Will she continue with more chemo or not? We don’t know… We also have to apply to the Burzynski clinic through the FDA now, which is yet again another hurdle we have to cross. When can she go? We don’t know. We can’t until her bloods have recovered. Will she be approved to go? We don’t know, it’s all pending on the FDA, current protocols and if she fits “the right criteria” to recieve treatment at the Burzynski clinic.
Time will tell and reveal all the above. Answers will come in time…..for now, we are taking a step back to review the bigger picture. We will decide the best way forward once we have more answers, more insight and more information to make the best possible decisions that Chiane can Benifit from.
We still have a lot of options on the table, we just have to decide which one is the best one for Chiane. Once her platelets have recovered we will push forward and not look back, no matter what we decide.