Treatment Plan and Expectations

Where to begin . . .

The past several days have included every human emotion. Numbness, disbelief, deep sadness, incredible hope, pangs of nausea, moments of acceptance, contemplation of death, contemplation of a life that was not the one you had expected, incredible love for our children, inner-strength, confusion, serenity, chaos, observation of the innocence of childhood, flashes of clarity within the haze – we are exhausted. And yet we feel cleansed and ready to face this challenge.

My parents have flown out to be with us and that has been a way of keeping life as normal as possible for our children. As they help take care of the kids we can have our moments, do our research, find time to reflect.

We have a plan in place for Rosalie’s treatment. First, she will need full cranial spinal irradiation (CSI). You will remember that the first time around we chose to avoid this treatment (clearly the most effective with medulloblastoma), due to the severe late-term effects on the developing brain. This radiation (IMRT) will take five weeks and will be followed by a six week rest. She will then begin oral chemotherapy for the next 11-12 months. This chemotherapy will not be as intense as all the chemotherapy she received last year. It will be administered on an outpatient basis. She will take CCNU (lomustine) in conjunction with accutane (a non-chemotherapy agent known to fight tumors). The CCNU will be one oral dose every six weeks, for a total of eight doses. Dr. Banerjee says that it is likely that Rosalie will only tolerate 5-6 doses. But we will try for 8. She will reach her blood count nadirs three-four weeks after taking the chemo – and she should not bottom out the way she did on all the chemotherapy she had in the last year. It will be the same routine of avoiding public spaces should she become neutropenic. She may require red cell or platelet transfusions when her counts get low. We will go to the ER any and every time she has a fever.

The radiation will be much more encompassing than when she had conformal radiation to the posterior fossa. In the short-term, she will feel nauseous and most likely fatigued. She will lose all of her beautiful hair (again). The long-term side effects of the radiation will be significant. She will probably lose IQ points over the years and cope with serious learning disabilities, she may have a very short "sitting height", because the spine will slow its growth and she may have a host of endocrine issues that can be controlled with hormone replacement. We know that these side effects are documented and very real. We also know that miracles happen, children blow our expectations out of the water, and there are always exceptions to the rule. We know that cure comes with a price, but Rosalie will always be our Rosalie. What radiation has not been known to effect is personality, generosity of spirit, or ability to love.

Rosalie has surgery tomorrow (Monday) to place a central line and have a spinal tap. Rosalie needs a central line to administer the anesthesia she will need for her twenty-five sessions of radiation. She will also need it for the administration of IV antibiotics any time she has a fever. When Rosalie was younger, we opted to have a central line called a Broviac which had external tubes. Now that she is older and more mobile, we have opted to have a central line called a port. It will be underneath the skin close to the collarbone. The disadvantage to the port is that she will need to be poked every time it is accessed. The advantage is that she can maintain an active life without having to worry about her “tubies.” She will even be able to go in the water, a luxury she did not have when she had her Broviac.

On Thursday, July 3 she will have her radiation simulation under anesthesia.

We hope to begin radiation as soon as possible the next week (Week of July 7).

Just a note to those of us who see Rosalie and those of us who pray for Rosalie from a distance. Remember that Rosalie does not need our worries, our anxiety, our sadness about the situation. Rosalie needs encouragement, she needs optimism, she needs to feel like a normal child, she needs our inner belief that everything is going to be okay. Mark was listening to this segment on NPR about a woman who had a severe stroke during childhood. She made the most amazing recovery and she attributed it in part to a rule her mother made from the first day – if someone approached her hospital room in a slump, with a mopey expression, she turned them away at the door. She made a differentiation between energy givers and energy takers. Let us all be a community of energy givers to sweet Rosalie. She can do it, we can do it, and this cancer CAN be overcome.

Thank you so much for all of your well-wishes, love, and support. You have no idea how much our network of friends and family has helped us to cry when needed, keep our chins up, and our spirits high.



We Can Do It!

Love,
The Reibels