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Dear everyone,
Here it is! The next milestone achieved... Love, Melanie (smiling huge)
Great News! Today we learned that somewhere, someone, who is a 6 out of 6 antigen ("perfect") match has passed all the tests and agreed to be a morrow donor for Travis!!! What incredible news for us! We are overwhelmed at this milestone -- altogether relieved, excited and scared.
We don't know where this person is from, nor what brought him / her into the Marrow Registry, but we are so blessed that he / she has made this important decision to help offer Travis this chance at life. According to the National Marrow Donor Program regulations, we cannot know the identity of the donor, nor he / she of us, until by mutual consent after one year point post-BMT, when we can communicate if we wish (and, of course, we do!). Our hearts are so full at this moment.
Please note: Our transplant medical team is continuing to search for additional potential donors for Travis, as this is it -- the only qualified, matched donor so far. In the terrible event that something should happen to render this wonderful woman unable or ineligible between now and BMT time, we would be stuck. It happens only rarely, but it happens -- and contingencies must be planned. So, for those of you who are organizing upcoming bone marrow drives, or who plan on registering, please know that this is still VERY important to Travis, and certainly to the other 3,000 people (and their families) who need a bone marrow transplant to survive. We hope you are able to continue with your efforts.
Travis' bone marrow transplant has now been scheduled for September at Wisconsin Children's Hospital in Milwaukee. He will be admitted to the hospital to begin the pre-conditioning phase (high dose chemo and total body irradiation) that will lead right into the transplant 7 days later. Prior to this, he will continue on the prescribed chemo protocol. We are told that Travis' hospital stay will likely be 4-6 weeks post transplant. During this period he will be in a specially filtered isolation room -- Joe and I will be allowed in with him, and Spencer occasionally, as long as we are healthy. Travis will not be allowed to leave his room throughout this period.
One parent can stay in the room with Travis each night, so Joe and I will trade off to be rotating with each child. After successful engraftment of the marrow and other important immunity system levels are reached, Travis will be allowed to leave the hospital, but we will have to live near the hospital for possibly 3 more months, with continual outpatient clinic treatment -- degree to be determined, of course. And after this, back home... (-:
We visited the Ronald McDonald House in Milwaukee today-- a short walk or drive from the hospital -- and it is absolutely lovely. It reminds me of a comfortable, cozy lodge with wonderful, caring staff. We are going to get on the list to stay there, and hope that this works out for our needs. If not, we will find a furnished apartment. But the RM House will hopefully work well with the setting, location, amenities and incredible children's play areas for siblings. What a wonderful cause this is. Never did we imagine we'd be needing it...
The transplant doctor said "no Kindergarten this fall" due to all the viruses, etc. that get carried in, particularly at that time of year, so as to not jeopardize Travis' health at this critical pre-transplant period. We dearly hope that he will be able to enter school sometime after the BMT this school year, as it will be so important to his emotional and physical recovery. But that's down the road for now... We're disappointed, but completely understand and agree. We'll deal with it.
People keep saying to Joe and me how "incredible" we are to be dealing with things so well... Believe me -- we don't always deal with things so smoothly! Honestly, it is a horrific strain on the family, and surely is taking it's toll, but we are fiercely trying to hang on tight to the closeness we have always had and will work hard to get through the rough spots as an even stronger family. Not without a lot of pain, as you can all imagine, I'm sure. Last week was very rough on us -- I was especially shaken... Travis had a severe (at least I call it that) allergic reaction to a chemo treatment.
Fortunately, we were already at the hospital for a blood transfusion, but
Travis' throat became constricted and it was hard for him to swallow. Urgent medical care was provided immediately (shots and IV medication) that got Travis' breathing and swallowing back under control -- not after a VERY scary and painful 30 minutes (or was it longer? Felt like FOREVER.) It was a most vivid "cancer moment". I hope we NEVER experience something like this again.
Travis was really scared and distressed, but in typical fashion, recovered in full strength and humor by the next day -- leaving edgy, worried parents in his wake as he ran around playing! Tomorrow we go again for similar chemo...praying that we've identified the problem and it won't reoccur. So, no, all is not easy and rosy. This episode really sucked, to put it bluntly. But news like today's really gives us renewed hope that things are progressing as they need to be.
So, the journey continues. The hill feels really steep, but we're climbing faster now. I keep clinging to the phrase (and I think Travis epitomizes this) that I saw on a ListServe member friend's signature -- it reads:"I may have cancer, but cancer doesn't have me."Amen to that. Thanks for caring. We know you're there... and boy, does it help. Thank you, everyone.
Love, Melanie, Joe, Travis and Spencer