Dealing with Leukaemia is a lot like climbing Everest. You have two options. You can attempt it via Nepal or you can attempt it via Tibet. Neither option is straight forward. You need to prepare, get the right equipment, the right advice, maybe a team? You study the stats. 10% don’t make it. You weigh up the risks and you decide to invest your life. It takes everything to conquer. At first you don’t think you have it in you. Half way through, you want to stop; you want to pause at base camp. You decide a break would be nice.
The frost bite in your toes doesn’t go away. You have to just learn to live with it. Stepping forward with numb feet is awkward. The pain in your chest from the icy winds of despair almost takes you out. You can’t see far in front of you, except from the light of your lamp strapped to your head. It’s just enough to get you by. The dexamethasone helps send the signal to your brain, it reminds you to breathe. You have never experienced the dizziness of this height before.
Descending is no longer an option. Besides which, the risks are just as high if you quit. And so you battle forward, unsure why you started out in the first place. Whose idea was this? It doesn’t matter who or how much you pay- there are no guarantees. The climb is daunting and formidable. It takes all your strength and still more. Just before the summit you enter the ‘death zone.’ So close, yet so far. Can you make it through?
I never really liked those documentaries. I prefer to leave the room, make a cup of tea. I nearly walked out of the cinema during ‘Vertical Limit’. I can’t bear to see pain in others, even in films. Yet here I am, suspended between life and death. Hanging by a rope, anchored to a cleft in the rock. If I could ease the weight I would do just as Annie’s father did. He cut the rope; he took his life to save hers. I would do anything to save her but in this instance it won’t make a difference.
Like attempting Everest there are two options for us too. Continue with chemotherapy for six more months with a bone marrow biopsy every three months for three years or a bone marrow transplant. The concern with this is the risk of relapse. If a patient relapses, and they find leukaemic cells in the marrow again they give you a 7 month window for treatment. If you aren’t in remission by then, you die.
An unrelated donor transplant is called a MUD. They do their best to match tissue type, reducing the risks of graft versus host disease. A little graft versus host is good. Too much is disaster. But there is also the risk of infection and those first hundred days after the transplant are vital.*
People say to me, “It’s so exciting she is in remission.” Yes, it is. If she were not in remission her Leukaemia would, most likely, have been fatal by now. Remission simply means we can continue. If they recommend a bone marrow, or stem cell transplant it means she will continue with chemotherapy until the donor is certified and still available. While they wait for the medical team to fly overseas for the stem cells, Sam will undergo radiotherapy and chemotherapy to make sure there are no Leukaemic cells left. She will be admitted to St Vincent’s Hospital for about a month, more if necessary. When she returns home we need to keep her isolated from any kind of sickness, or bacteria. This will have its challenges with 2 teenagers in our small house. Instead of going to RNSH for blood tests and transplants, we will travel to St Vincent’s every second day.
I feel I have reached my limit of human endurance. The strength of my will is at its capacity. Through it all, I hold on, living by the dim light of the word of God which is “a lamp to my feet and a light to my path.” Psalm 119:105
We can’t do this on our own. It is necessary for us to gather a team. I need people who will pray and will believe. Two are better than one, because they have a good [more satisfying] reward for their labour;
Ecclesiastes 4:9-12 says: “For if they fall, the one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! Again, if two lie down together, then they have warmth; but how can one be warm alone? And though a man might prevail against him who is alone, two will withstand him. A threefold cord is not quickly broken.”
And so, I am grateful for community and family; holding on to Father, Son and Holy Spirit. The three strand cord that does not break. We will reach our summit. When we do, we will know “that light, momentary affliction (this slight distress of the passing hour) is ever more and more abundantly preparing and producing and achieving for us an everlasting weight of glory [beyond all measure, excessively surpassing all comparisons and all calculations, a vast and transcendent glory and blessedness never to cease!]” 2 Corinthians 4:17
I hang on to this hope, ready to place my flag firmly into the ground knowing also that we “have overcome (conquered) by means of the blood of the Lamb and by the utterance of their testimony.” Caught up in this mountain, I am so aware of those who went before us. The great apostles of faith in that great cloud of witnesses who cheer us on, reminding us of what Christ has already done on our behalf, for us to be healed and restored.
* During the first 100 days after transplant they expect her to be neutropenic and have no ability at all to fight infection. They expect mucousitis, a painful reaction in the mouth causing ulcers and swelling which is almost unbearable. Some patients experience burning in their feet and hands, a rash on their shoulders, abdominal pain, cramps and diahorrea. In chronic cases the patient will have dry eyes, mouth and skin as well. During this time, it is important that she has no contact with anyone who is sick. They expect she will be tired, extremely tired. So the normal running of a household will irritate her and cause her anxiety.