Exhausted

Last Monday, Saskia went with Melanie to hospital to start her next stage. This stage actually started a couple of days earlier (on Friday 15 August). From that day onward she received daily injections of "Sagramostim" (or GM-CSF). This is a medicine similar to a substance made by the human body in small amounts and helps to produce normal infection fighting white blood cells. There is some evidence that sagramostin increases the anti-cancer effect of monoclonal antibodies.
On Monday she received a PICC line. This line (separate from her port line) was used to inject the monoclonal antibody CH14.18 (excuses for the medical terms here). This is a protein made in the laboratory and specifically designed to attach to neuroblastoma cancer cells. When the protein attaches to a cancer cell, the body's immune system is stimulated to attack and kill the neuroblastoma.
Her port line was used to keep the body under a continuous supply of hydration as well as morphine. While Saskia was admitted, she was attached to all kinds machines to monitor her heart rate, her blood oxygen levels and the rhythm of her breathing.
The cycle of administering the antibodies started daily at about 2 pm and lasted till about midnight. From 2 hours before till 2 hours after, she received high dose of morphine, which Saskia could regulate herself.
On top of all this she still received the various medicines for her shingles (which is now finally under control and fading off). During the administering, a nurse stayed constantly with her to monitor Saskia and the machines.
The whole week was not overly exciting (if you can speak of excitement that is), but we could see that it was exhausting to Saskia. She slept through most of the day, hardly ate anything (either not in the mood or just too tired to chew), but the most important part was that her pain was under control. The most pain she felt was level 6 (out of 10) and concentrated around her stomach and lower back (which is usually the case apparently). She had daily fevers, but this was a common side-effect to the treatment, so nothing to really worry about.
Saskia was so much looking forward to going home and she was allowed on Friday. We left the hospital at 2pm, but when we arrived home she was so tired, she went straight to bed. However, within the hour she had developed another fever, which climbed very quickly to 39.6 degrees, which means that we had to go back to hospital. So we were back in hospital at about 6pm and back in the ward at 8pm. She had a terrible night (restless, painful, itchy, etc), but the following morning, the fever was over and all blood cultures came back negative. Although the doctors still did not have a clue what the fever may have caused, she was allowed to go home once again. When she came home she was greeted by her little Duchess and both fell peacefully asleep on the couch.
Today she was still too tired, but she should be right for tomorrow to go back to school.
A few more sessions and then we're done. Keep fighting on Saskia!
The daily injections of sagramostim will continue untill Thursday and as of tomorrow she need to start taking isotretinoin, which is a drug closely related to vitamin A and has been shown to stop the multiplication of any remaining neuroblastoma cells.
Please do keep her in your prayers that she may find the strength within her to keep her spirits high.

A little delay

Last Friday Saskia went to hospital and it was decided that the antibody therapy would be delayed with one week. Her shingles must be under reasonable control before she can start with the treatment.
She got some different medication for pain relief, which settled her down a little more. Last couple of days she was a little sick, but nothing really to worry about.
So this coming Friday Saskia will receive an instaflon in her shoulder. This is a little tube just under the skin, through which daily an injection will be given. Then Monday next week, she will be admitted into hospital. She'll get a PICC line in one of her arms. Both the PICC line as well as the port she still has will be used to administer the various medications she needs during her hospital stay.

You Got To Be Kidding...

Sorry for the lack of updates since our last post. We have just been enjoying Saskia being in relative good health  and returning back to school. It was great seeing her smile every day of the week. She sees the future bright and clear and is determined to go to year 8 next year. Her home tutoring is going great and she slowly starts to feel like a normal person again. Even her hair starts growing again (yes, photo's will follow soon...).
However.....last Sunday she had some pain in her back, just under her shoulder. We all though it was just a muscle pull as she has gone through a bit of a growth-spurt and has been relative active over the last couple of days, but considering the circumstances, we had better check it out. The emergency doctors at Mt. Barker hospital basically confirmed our own diagnosis and after a couple of painkillers, the pain seemed bearable. Monday however the pain was still there and that night she could hardly sleep. Today she did not go to school and we saw some blisters appearing. We knew this was no good. Last time this happened was when she was about 7 years old and was then diagnosed with shingles. We called the oncology ward, who advised us to go to the GP, who confirmed that it was shingles.
Shingles is caused by a viral infection of the nerves just below the skin. It is caused by the same virus that causes chicken pox. Once a person has had chicken pox, the virus remains dormant in the body and can re-emerge as shingles when the immune system is down.
Now this just blew our minds. We were just preparing for her anti-body maintenance treatment, which is due to start coming friday and now this. We are hopeful that the treatment still continue as per schedule as it at least means that she will be under morfine-control which will suppress the pain she presently has.
Please pray that she will continue to be positive about all that is to come.