We are very close to the start of the bone marrow transplant (BMT). Officially, the timer will start when UCSF calls us and says they are “activating” a donor. When we get this call, we will be in a 3 week countdown for the transplant.
We had a tour of the UCSF BMT facilities the other day. It is very interesting in how they have it set up. The room Clark will be treated in is behind another room they call the “anti” room. The “anti” room is a “prep room” where Beth and I will store and eat our food, as well as scrub up and prepare to visit with Clark. Clark will not be allowed out of his treatment room for the entire 6 weeks he is being treated at UCSF. Beth and I will be allowed out, but we will need to sanitize up to our elbows before entering Clark’s room.
As well we learned that Beth will not be allowed to shower in Clark’s room, but she will be able to use the toilet. If Clark was potty trained, then this wouldn’t even be allowed. There is concern about spreading outside bacteria by steam (shower) or having him touching the toilet (if he was potty trained). Beth will have access to a shared shower room that is on the floor.
The most dangerous area in Clark’s treatment room is the floor. Clark will not be allowed to touch the floor without being on a plastic mat or wearing some type of protective foot gear. If he drops a toy from his crib, it will need to be completely sanitized before being handed back to him. As you might suspect, plastic toys that can be easily doused in disinfectant are preferred to stuffed animals (which have to be washed). Clark loves fire trucks, and action figures that ride in fire trucks, so we think this is a small blessing.
Clark will not be able to eat any home cooked food. It will either need to be made by the hospital, or in a sealed package (Larbar is a good example). After opening a food item, it will have to be eaten or thrown away within 2 hours. Bethany can bring her meals into the anti room, but not into Clark’s room. This includes drinking water as well. There can be no risk of Clark reaching for someone else’s food, and being exposed to foreign bacteria.
The plan of action, looks to be that Beth and I will switch off staying with Clark. Beth will stay Sunday to Friday, and I will cover Friday to Sunday. That way both Connor and Clark can see both of us over time.
The facilities overall are very nice. They have many areas designed to allow people of all ages to decompress and de-stress.
Patrick and Beth, I am so glad you have found a bone marrow donor. Nobody expects that these things will happen to us. But, they do happen to some of us. Best wishes to your whole family as you deal with Clark’s condition.
Dear Patrick, Beth and family:
Since we learned of Clark having DKC and the details of the procedures to ensure the best for him, we have been in a constant state of worry. Our own year was defined by the tragic brain bleed (AVM rupture) Nick experienced last November. While there are many differences in their ages, nature of the impact on immediate family, etc. the sense of grave potentialities runs through any family’s minds. From thinking Nick would never recover to our absolute joy that after several months he was able to get rid of a feeding tube to his belly and getting rid of his traec after finally being able to swallow again without risk of choking, we experienced a strange state of mind. I would hear conversations where others spoke of this and that but not really “take it in” in the old way. Vera and I would argue over almost any comment from medical staff which left the door open to our further speculation as to our son’s future. It was like the rage one feels when comments are made by well-meaning people that “everything will be fine” and “I know that everything will be fine”. I wanted so many times to shout at whoever made such comments. How do YOU know, our own neurosurgeon cannot say such things!!
We hung on the smallest observations of Nick’s doctors. We clung to his words when our neurosurgeon shared that he had a woman a little older than Nick who experienced “almost full recovery” from her equally serious AVM. We swallowed our rage knowing that so many comments were just made out of good will, out of wishing the best for Nick and our family, etc. They were certainly not ill-intended, we were just too wound up, too shocked and too sensitive to process the statements as only that!
In high school we used to have to memorize plays and poems and this quotation from Shakespeare’s Julius Caesar always stuck with me as having much relevance in difficult situations:
Between the acting of a dreadful thing
And the first motion, all the interim is
Like a phantasma or a hideous dream.
The genius and the mortal instruments
Are then in council, and the state of man,
Like to a little kingdom, suffers then
The nature of an insurrection.
Act II, Scene I
We have read and followed all the entries at getwellclark. It is such a help, answering so many questions before we can even form them! It is a living example of doing the very best under very difficult circumstances. It is superb. It is an inspiration.
News from your mom, via my sister, of having begun the final steps for a transplant is wonderful. I’m sure it has intensified your worries as to its outcome, whether everything will go well or not. Our love and best wishes for a best possible outcome are with you all.
With Nick we have been as intensely joyous with his near complete recovery as we were intensely fearful and in shock when the hospital asked if we were Nick’s parents and told us to come right away to emergency. I am sure you and Beth can relate to such a roller coaster of feelings.
It is helpful, perhaps, to take a passage from Gibran’s The Prophet which I have not memorized but always been affected by its insights:
On Joy & Sorrow
Then a woman said, “Speak to us of Joy and Sorrow.”
And he answered:
Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that hold your wine the very cup that was burned in the potter’s oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Our best thoughts and optimism are with you!
Bob Cruise and Family.
My heart goes out to you all. After reading the full story, it breaks my heart that you have had to endure so much. No child should have to go through all of this and no family should have to watch. But as you said, you have no choice but to deal with it and it sounds like you are doing an amazing job. Know that we all support you and are here for you in any way we can be.
Sending our love and best wishes,
Kanval and Ian