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.




Filed under Life

4 responses to “Everest

  1. Jane Grover

    Away in the Blue Mountains right now Clare, and have done about 5 long bushwalks in the past ten days……….although nothing comparable to climbing Everest or your Everest, I can relate to the journey of the long walk, the stages that you go through, you start off prepared, excited, filled with expectation, thinking you can conquer all, hoping you are up to the challenge, the journey goes on and on then comes endurance, doubt, pain, moments of wondering why you even started this, then comes a glimpse of what you think is the end, and you rise again, you think hey its wasn’t that bad after all I’m nearly there, but then you round a corner and there is another steep incline, and it requires you to put in something more, something you had not planned on or thought you had in you, as you push on, you go beyond your previous limits, now thinking is this ever going to end??? and then in a suddenly sought of way, you make it, you plant the flag, tick the box and THEN you look back and think I can’t believe I did that………you are a different person at the end, that you were at the start.
    I’m praying, believing, standing with you all, whilst you are the ones walking, climbing, enduring…. I know whatever option you choose for Sam’s treatment God will enable you to go on and on, until healing comes and then, we your friends will rejoice with you when you plant that flag. xx Love you xx Jane

  2. Dearest Clare,we (and a host of others ) will lift you when you fall,you will not be left alone, and you will reach the summit. You and sam are couageous women of God, you are covered in prayer by a host of intercessors who love you xxxxx

  3. Sandy Foster

    Dearest Clare – thank you for sharing your journey with us. We want you to know that we we are partnering with you in this journey and all it has entailed. We stand in the gap for you believing and knowing that our prayers carry you through on the days when you feel all strength has left – we pray that when your heart is overwhelmed within you that always you will will be led to the Rock that is higher than you (Ps 61). We pray that in the day when you have cried out to Him, He has answered you and made you bold with strength in your soul (Ps 138) and the wisdom and grace of God is continually upon you in the myriad of decisons that are ahead.
    For the mountains shall depart, And the hills be removed, But My kindness shall not depart from you, Nor shall My covenant of peace be removed (Isa 54:10).
    I am going to Hawks Nest on my own for a couple of days next week – I will be praying for you and seeking God knowing that I am partnering with you and God’s people as you reach the summit.
    With love, Sandy xxx

  4. Christine G

    Clare … I’m one of the ‘host of others’ – reaching out to you and Sam with heartfelt love, such admiration and all my prayers.

    With huge hugs … Christine xx

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