Friday, January 1, 2010

Day +275: Goodbye 2009...Hello 2010!

It's day +275 for Max and New Years Day...Happy New Year! We have had an eventful past 10 days and definitely sent 2009 out with a bang but, not exactly the kind of "bang" we would have liked! I'm going to start with the good stuff and I'll get to the rest in just a bit...

We enjoyed a wonderful Christmas Eve and Christmas last week, followed by a fun day celebrating Max's birthday. I've included a picture of the kids holding some of their favorite gifts - Max, Tony Hawk Ride (the skateboarding video game); Alex, his Chad Johnson jersey (not OchoCinco, Santa couldn't afford that one!); and Ellee, her stuffed bumble bee and baby doll. Max told me that it was the best Christmas ever and that was an excellent gift for Matt and I!

Max's Meals Christmas Eve dinner at the hospital was a success too, thanks in HUGE part to my mom's friend, Donna Phelps and her great family. They cooked up a delicious feast of roasted pork, scalloped potatoes, salad and green beans that everyone was raving about. They also had some of Donna's speciality deserts which were a big hit! In addition, we brought down a couple of trays of homemade Christmas cookies that the Meyer and Sherwin girls put together and the families enjoyed those too. Overall, we got to serve many of the inpatient families (including several of the kids themselves) on A5 and from the ICU, along with some doctors, nurses and other support staff. I personally got to see two families that are near and dear to our hearts, the Alfred's and the Martin's, and give them all big hugs. Both families continue to struggle with Ethan and Brayton's recoveries from their bone marrow transplants so, it was great just to see them and to feel like we were able to do something, even if it was small, to brighten their days just a teeny bit. We know first hand how tough it is to live in that hospital, watching over your sick child, day after day...so we knew that this time of year has to be especially difficult. We all hope that all the families just got to have a small break from the norm down there and enjoy some home cooked comfort food.

The rest of the week we enjoyed just hanging out and playing with all of the kids new stuff. It was very quiet around here, as usual, and we were struggling a bit with the after-Christmas let down. The kids and I are definitely growing more and more tired of this isolated lifestyle, being here at home 95% of the time, with the exception of a few small trips to relatives homes or to the hospital. With the winter now setting in and the cold here to stay for awhile, it's getting tougher to keep everyone happily occupied inside these walls.

In the midst of all this, we continue to battle Max's cyclosporine level, as you will probably remember from my last post. We have been down to the hospital multiple times each week to have blood drawn so that they can monitor the level of the drug in Max's system and try to get it back up to where it needs to be to prevent him from having other problems, etc. We have gone back to the non-generic version of the drug over a week ago and raised the dosage level 4 times since then, all to no avail. Obviously, each time they want to check Max's blood levels, he has to be stuck with a needle, which he was no longer accustomed to due to the central line he had for almost 10 months. We removed the line, as you'll remember, because we were down to once a month sticks for IVs and the benefits of no sticks no longer seemed to outweigh the risk of serious infection from the intravenous line. So, as luck would have it, one week after we remove the line, we encounter these cyclosporine level issues and have to go in for multiple sticks each week!

We have been getting Max through this the last few weeks by doing finger sticks rather than peripheral needle sticks. However, yesterday morning when we went in for our second level check of the week, his fingers just wouldn't cooperate. The blood just kept clotting up and wouldn't drip out enough to fill the two small vials that they needed. Finally, after three finger sticks, the nurse was able to fill the vials. During our visit yesterday morning, I asked the nurse to have our Nurse Practitioner, Paula, come in to look at Max's eye again (the same one that had the styes last week) as it continued to be red in the corner of the white part. Both Dr. Joshi (our regular outpatient clinic BMT doc) and Paula checked out his eye and then lifted his shirt, only to find a mild rash over his tummy and back. Much to our surprise, they think that Max is experiencing a mild form of graft vs. host of the skin and have put him on an eye drop and lotion three times a day to try to combat it. They think the redness in his eye may also be GVHD presenting itself. They are not overly concerned at this point and believe it is from the cyclosporine level issues we are experiencing but, as a result, we will be back down there next week for rash checks and an Opthamology appointment. As Paula said as she was leaving our room yesterday, "you all are going out of 2009 with a bang with that rash!"

We arrived home from the hospital at about noon yesterday morning, tired and hungry as we were only expecting our visit to take about an hour and it ended up being about 3 hours! We were planning to rest for the afternoon and get ready for a fun evening with the Meyer family celebrating New Years. Unfortunately, at 3:30 pm yesterday afternoon, Paula called me to say that the blood had hemolized (clumped together) from the morning and was therefore giving them erroneous readings on some of the tests. Dr. Joshi was insisting that we came down again to have another draw to be sure the levels were alright. I wasn't sure how to break this news to Max and when I did, he was not happy. But, we pulled ourselves together and decided to make the best of it, promising some packs of basketball cards for him if he could just do it one more time. Much to my dismay, things got worse once we got down to the clinic. The nurse, who we know and love from all our time down there, came in and said that we were going to have to do the peripheral needle stick to get the blood, not a finger prick since that had caused the clumping issues that morning. Max began to freak out about this and wouldn't let either of us touch him. At one point, he had me and the nurse both in tears as he shouted across the room, "I have been through enough today, Mom! I have had three sticks already! I am NOT doing this!" It ended up taking three nurses, along with me, to get the blood drawn and Max and I were both exhausted.

On the ride home, we decided that 2009 just wanted to give us one last really shi$%y day so that we would always remember what a crappy year it was and appreciate all the great years ahead! I told Max that I have been thinking for some time that while 2009 may be one of our all time worst years, I think 2010 is shaping up to be one of our best! We talked about all the fun things that lie ahead this year - our trip to Disney with Make A Wish; a trip down to visit Great Grandma (my Grandma) in Marco Island, one of Max's favorite places; Aunt Sarah's wedding in March; our trip to Hilton Head with the Meyer family; another possible trip to Hilton Head for my cousin's wedding; being able to play with lots of friends again; being able to go shopping at Target again (one of Max's favorite stores) or to fun places like the movies, Ollie's skate park, just about anywhere that Max loves to go; just a general return to a more normal 8 year old life. We are hoping and praying that this will all be possible for Max in 2010. We are all very ready for it and greatly missing it.

After talking about the fun to come in 2010, we also talked about the fact that we did have some fun times in 2009 - our trip to the Reds game topped the list; our 100 day party; many days/nights having fun with our cousins. The list was quite a bit shorter than the fun we plan to have in 2010 but, there were good and fun things that even Max could list from 2009. After all was said and done yesterday, we were able to gather ourselves back together, muster up some remaining energy and enjoy some fun with Matt's sisters, their families and his mom ringing in 2010.

Times have been a bit rough again lately. In the BMT world, you never really know what lies around the corner. Things can be seemingly perfect, only to find out the very next minute that they are not what they seem. We are very optimistic that we will get through this bump in the road again with Max and get back onto smoother highways but, we have to admit that this journey continues to be difficult. We know that it could be so, so much worse and we are eternally grateful for the many, many blessings that have been showered upon us along the way...but, we also have to be honest...this is getting old. We are doing all we can to live in the moment and make the best of what we have and where we are each day but, we all have our tough moments. I don't think it would be right if we didn't have them.

One thing is for sure...2010 has got to be a better year. You can bet that you will see us thoroughly enjoying every fun moment that we are given in 2010 and sharing them with all of you.

More soon...

Peace, love and Happy New Year,
Kristi (and Matt, Max, Alex, Ellee and Spud)

3 comments:

  1. Happy TwentyTen to you and your crew, Kristi!! Sarah and I are going to get with you soon on the best night of fun ever...we'll watch the kids and you can go out!
    Giant high fives and hugs,
    Maggie
    ps. Tell Max and Alex I'm working on a new slam dunk move.

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  2. Hi there.. sorry to hear that 2009 had to end on such a sour note. I hope that they have everything adjusted and in working order!! 2010 sounds like it is going to be packed with FUN!!!!! That is awesome. I did get your email on E's site and really either Thur or Fri will work. Whatever works for you~truly... and if this week doesn't work don't worry about it. I have been venturing out so I am definitely doing ok.
    My number is 507-217-1128. Hope the cabin fever is getting better!! It seems like January is the worst for everyone...especially at home.. we are experiencing very cold temps...minus 33 without the windchill!!!Yikess... good thing we are still here!
    Hope to hear from you soon.. my personal email is katalfred@hotmail.com
    Kat and Ethan

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