This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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Day -1

My name is Judy and I am Jaime's Mom and I am updating her blog because she is saving all her strength to get to day Zero for transplant!

So far Jaime is responding much better than anticipated. The side effects have been less than we thought. Yesterday Jaime had twenty straight hours of chemo which included the ATG. By far, the introduction to the rabbit serum (ATG) has been the hardest on Jaime. She had fevers and as she said "she hurt everywhere" lots of bone pain, discomfort and nausea. The rabbit serum attacks the T cells (they are thought to be the cells that contribute to MS), so naturally the body rebels a lot! Her heart rate jumped quite a bit and her oxygen levels went pretty low and so she is now on oxygen.

I will take this time to tell you just how brave and positive my daughter has been. We are all so proud of her. This procedure is not for the faint of heart and you really need to be committed 100% to this process. I can see that it would be very easy to give up on this because the Chemo is absoultely brutal, but if you want something bad enough, you must dig deep within yourself to ride this out. Jaime has done that, and so far so good. Jaime has taught us all that there is power in hopefulness and positive thinking.

Jaime still has her hair and they tell us that she will lose that within ten days of the last chemo (which is today). We did get a stunning wig that looks great on her (I wish I had that hair color), and we have various cute hats that she can wear, so we keep telling ourselves we are ready for the hair loss. It's just one more thing to get used to, and in the scheme of things not too hard to deal with.

Jaime's spirits are good and we have been told by the physicians that the most effective thing she can do is to WALK. Walking, sitting up and moving around is the single most powerful thing to help herself get well during this journey. Well that and keeping a positive attitude, there is really something to the whole "mind or matter" thing. The other thing that is critical is eating. That's been harder because of the nausea she has had with the Chemo, but she is encouraged to eat even when it's the last thing on her mind, even if it's just something small. Interestingly enough, she always feels better after she eats. She has had a lot of headaches also but we found that single shot black and white mochas help her.

If you must be sick, I can tell you that this is the palce to be. Jaime has been blessed with the most skilled and compassionate nursing staff we have ever seen, and face it, Jaime has seen A LOT of health care providers. These physicians, nurses and really anyone who is in on this process, have years and years of experience in transplantation and the nurse that Jaime had yesterday had over thirty years of experience with the Fred Hutchinson Cancer Center. These providers are dedicated and have a passion for what they are doing. They make such a huge difference in their patients lives! The complications for the transplant are many so nurses only have two patients to care for so we all feel very well cared for.

Jaime's numbers were all good this morning, so the doctors believe that most of her trouble yesterday was contributed to her reaction to the ATG.

So, we are looking forward to tomorrow and day ZERO, this will be the transplant day. We understand that Jaime may have some reaction to the preservative in her stem cells that are to be transplanted, but the good news is that she only has two bags of cells to transplant (hense less preservative). Some people have had as many as ten bags to transplant.

We will be back again soon to let you know how the transplant is going!

5 comments:

Camille said...

Judy,
thank you for letting us know How Jaime is doing. I think about her strength and what obstacles she is pushing through with the treatments.She is blessed to have you there and it shows what a devoted mother you are. thanks for keeping us posted and tell Jaime "camille" says hello and give her a gentle hug as well.

Jaime said...

Thanks, I'll keep you posted

Judy

Anonymous said...

When Jamie is feeling better I'd love to talk to her and to you. I'm doing this for MS next month - so obviously I'm very interested in it. My # is 208-661-8248. Tell Jamie I am thinking about her and praying for her.

Rami Amaro

Mike and Hallie said...

Dear Judy,

Was so glad to read your update about Jaime. Tell her we are still praying for her and we will pray even more for her on Monday. Tell her I will be fasting and will add her to my cause. We wish her all the best and are grateful you are willing to update us.

Love,
Mike, Hallie, and Landon

Have Myelin? said...

I wish the very best for Jaime!


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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