first days at northwestern

    • Anonymous
      September 9, 2009 at 8:11 pm

      (this is Sophie, Alice’s partner.. )

      Although Alice’s spirits are up, she is feeling a*bit tired and asked if I would update her blog.** We do plan on writing regularly to keep you up to date with her progress and the whole procedure – and were only unable to do so yesterday because of internet access problems in the apartment.*
      It was an exciting day though, finally getting started with this.* It feels like Alice has been on the starting blocks for so long now and we’ve finally heard “Go !”
      Yesterday started with a meeting with Paula Gozkziak, the nurse coordinator : she clearly laid out the time line for us and prepared Alice for the various tests and procedures she’ll be facing.*
      The basic timeline is this :
      this week*: undergoing all the tests necessary to determine Alice’s systems & organs are up for this procedure
      Sept 21st –>* one shot chemo to stimulate body to*generate stem cells* (from bone marrow into blood stream), then -again to stimulate stem cell production- 5 days Neupogen
      Oct. 1st : Harvesting of Stem Cells ( her blood will be transferred through machine which*will *retain stem cells, and then injected back into her body)
      on Oct.20th, Alice will be hospitalized, through Nov 7th (if there are no complications) – she will get intensive chemo for 5 days,* followed by the reinsertion of her stem cells on Oct 27th* (although it’s r of her own (frozen) stem cells*into her bloodstream, it’s still called “transplantation”)
      All appointments are in the same building, so it makes it easy to go up or down to the next one.*
      Alice was nervous about the neurological tests – what she calls “torture tests” – but when she came here in March and had these “conduction” tests done by Vincent, they were much less painful than they had ever been (he said himself if you do them right, they shouldn’t be that painful).* So we were relieved to see Vincent yesterday, and again he made the whole procedure bearable.***She was to have 2 kinds of tests : the Nerve Conduction tests, where they basically electrically stimulate her nerves (arms and legs) to see how strong the response is, and how long it takes for the nerve to respond.* Well her response was stronger this time than it was in March, which was great news, meaning that some axonal damage has healed (except the perineal nerve where there was no response at all) – but the response time stayed about the same : how fast your nerve responds depends entirely on the myelin sheath covering the nerve cell (axon),*the*layer of fatty tissue that protects the cell and speeds up nerve conduction.* As this is what is being “attacked” by Alice’s immune system, it was expected there would be no improvement here.*
      Alice was supposed to have another test, an EMG (Electromyogram) – where they stick a needle in your muscle and send electric shocks to study the response – and luckily they decided this test was not necessary.*
      – if Alice had any ankle strength she would have skipped out of there she was so happy.
      We went up to the lab where they literally took about 20 vials of blood. We couldn’t believe it.* Alice felt a bit faint after that (I’m not sure if that was a physical reaction or psychological one from seeing so many vials of her blood… )
      The day ended with an EKG (Electrocardiogram) : they want to make sure her heart is strong enough to undergo this procedure.***We weren’t sure what to expect, but this test turned out to be a piece of cake :* they just stick about 10 patches around the chest, hooked up to a machine which records her heart’s activity – took just a minute.

      This morning started with pulmonary tests, and a doppler echocardiography to measure blood flow.**
      She passed the pulmonary tests with flying colors – and although she got no comment on the doppler we’re confident they’ll be good.*
      The day ended with a meeting with Dr Burt and Paula Gozdziak.* Dr Burt expressed his optimism : because Alice is doing this early in her disease, it increases the chances of it being successful.**
      He reminded Alice of all the risks involved (death,infertility, losing her hair, risks associated with blood transfusions)*but they*are nothing for Alice compared to the hope of finally getting beyond this, getting her life back.
      Incidentally, people who have been doing Alice’s tests clearly have so much respect for Dr Burt and his work. The woman doing the pulmonary test this morning said he does wonders : she sees people coming in in wheelchairs, and then coming back walking the following year completely changed.*
      It all feels very positive.

    • Anonymous
      September 10, 2009 at 1:26 am

      thanks for keeping us posted. I wish alice the best. it is certainly interesting to get a blow by blow on a procedure like this.

    • September 10, 2009 at 1:42 am

      To Alice and Sophie:

      It feels like a miracle happening before our very eyes and I know Alice’s courage is the guiding force.
      These stem cell therapies have worked in Europe for several years. Why is our country so far behind?
      I hope we see more and more young people get their lives back.
      My prayers and best wishes are with you both.

    • Anonymous
      September 10, 2009 at 6:56 am

      Thanks Sophie,

      Nicely laid out description of Alice’s procedure. Please wish her luck from me
      and also try to keep this thread updated for us all. thanks Sophie:)

    • Anonymous
      September 10, 2009 at 7:09 am

      Thanks so much for the update. Our family will be following Alice’s journey with positive thoughts coming her way. Best wishes for a successful outcome.

    • September 10, 2009 at 10:09 am

      Best wishes to you both!
      Dawn Kevies mom

    • Anonymous
      September 10, 2009 at 10:44 am

      [FONT=”Georgia”][COLOR=”Sienna”][SIZE=”2″][B]Many thanks for posting for us, Sophie.

      We’re following and hoping … and praying.

      If good wishes and positive thoughts could help make the outcome bright, you two must know you do have them![/B][/SIZE][/COLOR][/FONT]

    • Anonymous
      September 11, 2009 at 7:57 am

      thank you so much for your encouragement and kind comments – i will continue to post updates here and on alice’s blog. 🙂 sophie