Monday, July 27, 2009

Day +117: Celebrating Life, Gardening and The Reds

Today is day +117 and we are looking forward to a fun week ahead! It’s Matt’s birthday today so we are planning a lunchtime celebration with him at a park somewhere in town. We are making the most of every opportunity to celebrate life together as a family! This will be our third celebration of Matt’s birthday so far! Last night we celebrated with Matt’s family at his mom’s house and the boys had a ball playing with their cousins, Will and Ben. Max was exhausted from a full day of playing. He had his buddy Jack from down the street over yesterday for the first time in 7 months and they were busy playing everything around here and catching up! He woke up twice during the night with super sore ankles…poor buddy. His legs are still trying to adjust back to the activity level of a 7 year-old! It takes some time after what he has been through.

Tomorrow we have to run down to the hospital for a brief clinic visit so that the doctors can check the level of Cyclosporine in Max’s blood. Our Nurse Practitioner, Paula, called me on Friday afternoon after our visit to the Day Hospital to tell me that Max’s Cyclosporine level had dropped substantially and that Dr. Davies wanted to increase his dose as a result. In talking to her, I realized that I had made a little mistake last week. In an effort to save some dishwasher space, I had started putting Max’s Cyclosporine, which he drinks in apple juice, in a paper cup. Unfortunately, the paper absorbed some of the medicine, thus leading to the low level in Max’s blood. So, we agreed to up the dose a bit and go back to the glass cups. Poor Maxer had a headache and a bit of high blood pressure on Saturday from the sudden re-increase in dosage. Luckily, he adjusted again by Sunday and has been feeling fine since, except for the sore ankles! This situation reminded me what a fine balance this whole process is and how easily it can be knocked off course.

After our quick visit to the hospital tomorrow, we are planning to head up to West Chester to spend the day playing with Aunt Molly and cousins Andrew and Jacob. The boys haven’t seen each other in a couple of weeks now so, they are looking forward to playing. We are going to spend our Thursday at the Day Hospital this week instead of Friday because Max is scheduled for two infusions of medication, which makes for a long day, and Friday is a HUGE day for us! As I mentioned in the blog last week, we were called by Make A Wish to attend batting practice with the Reds on Friday and are really looking forward to it. We were not sure whether we were going to be able to attend the game after the batting practice, however, because the seats are in the general seating area and we were figuring that Dr. Davies would not approve of exposing Max to that many people yet. Thanks to the wonderful company that I have been working for the last 13 years, we are going to be able to attend the game! A friend of mine at GE that manages the GE box at the Reds games and has been following the blog, called last week to see if I thought we would be able to attend the game if we had box seats. I had tears in my eyes and chills as I listened to her message and was so touched at the generosity and thoughtfulness of the offer. I have always known that GE was a great company to work for, filled with amazing people, but throughout this ordeal with Max it has been proven again and again. They have been so supportive of our family and have been rooting us on endlessly throughout this marathon. This is just another example of that support. When I told Max about the offer, he said, “GE would do that for us?” Then on Friday as we were leaving the hospital after clearing the whole event with Dr. Davies, he said, “Mom, Friday is going to be the best day of my life!” We are all anticipating a wonderful, fun time. Thanks to the box seats, some of our family and friends are going to be able to join us for the game too. Look for tons of pictures next week!

Max’s appointment at the Day Hospital on Friday was filled with mixed news. While his blood counts look good for this point in the BMT process (although they are extremely low due to the immaturity of Ellee’s marrow in his body and the immune suppression medication), his engraftment has been falling the last few weeks and is at its lowest level yet of 84.4%. Matt and I were definitely concerned about this latest development and had lots of questions prepared for Dr. Davies. She reassured me that she believes the graft of Ellee’s marrow in Max’s body is strong and that things are where she would like them to be at this point. She told me that she was not worried if Max ends up with a mixed chimerism (ie the make-up of his bone marrow) between that of his old marrow and Ellee’s. This was news to us, as was the fact that she will likely keep Max on the Cyclosporine for a full year. I learned a lot about Aplastic Anemia at the recent conference I attended and I understand her reasoning for continuing the Cyclosporine. She is trying to prevent the t-cells that remain from Max’s old immune system from attacking Ellee’s new marrow and causing the same auto-immune system issue that Max started with. The longer that she keeps those t-cells suppressed, the stronger Ellee’s new marrow will be and the better chance it will have of fighting off their attack. It’s all so complicated and not an exact process! We just take things as they come and hope and pray for the best for Max. We were reminded of Dr. Davies’ analogy of the BMT process to gardening. At this point, we have planted the seeds and they are growing but, there is an attack of yucky beetles on the horizon so we want to keep them away with some kind of pesticide. We just have to wait it out and be patient…just as gardeners are. We know that with time, Max and Ellee’s little garden is going to take root permanently and blossom into a fully functioning, beautiful garden full of healthy blood cells!

We still take things one day at a time in this marathon journey and we definitely still have our ups and downs. But, as we continue on, we see the beauty and the positives that have come out of this and continue to come out of it more and more. I thought you would all enjoy the video I have uploaded of Max and Ellee at the following link: She just couldn’t stop kissing him. Although I don’t have it on tape yet, Alex is equally enthralled and passionate about his love for Max. He hates to be separated from him and has slept with him every night since this journey began. There is no doubt that this experience has taught us all so much about life and bonded us in a way that nothing else ever could. For that, I am eternally grateful.

As always, thank you for your continued thoughts, prayers and support. More to come soon…especially pictures and fun from the Reds outing on Friday!

Peace and love,
Kristi (and Matt, Max, Alex and Ellee)

Tuesday, July 21, 2009

Day +111: Getting Busier

It's day +111 today and things seem to be getting busier all the time! I can't believe it's been another week since I've updated the blog! We've had another quite good week overall and managed to have lots of fun...with only a few worries here and there creeping in. Last Thursday, Aunt Monica offerred to keep Max so that I could take Alex and Ellee to the zoo. Ellee has never been in her life yet and Alex had not been in the summer in probably almost 2 years. We took cousin Ben along with us so that the "big boys", Max and Will, could have some good time playing together alone. I think that they may have enjoyed their "big boy" time alone almost more than anything! When we arrived home from the zoo, Max said, "Mom, I was thinking. Maybe Ben and Alex could play at Aunt Monica's for a while and Will and I can go to our house and play." Although they love their brothers, the two "big boys" really enjoyed their time with just the two of them together. We're going to do it again soon.

The zoo was fun, of course. Ellee was pretty much overwhelmed by all the people, not to mention the animals! She hasn't gotten out much in her young life so far so seeing so many people and then huge animals mixed in, she just wasn't sure how to process it all. But, she had a smile on her face the whole time and kept talking about the elephants and their "poo-poo" for the next couple of days (can you see the influence that two big brothers and four older boy cousins has on her?!?). Alex and Ben had a ball too. They really enjoyed the snakes and the gorillas. We got lucky and got to the gorillas just as the encounter with the keeper was taking place. He was feeding them lots of fruit that they loved and it was amazing to watch the animals interacting with each other. Overall, it was a great day. Mommy was exhausted from pushing the double stroller around our hilly Cincinnati zoo with all three of them in it but, so happy to be able to get out and enjoy some fun with Alex, Ellee and Benny. The pics of the four boys in the basketball jerseys were taken after we got home and they had a rousing Slam Dunk contest while pretending to be one of their favorite players (thus the jerseys).

Our visit to the Day Hospital on Friday was very uneventful which is always a good thing! The big news of the day was that they removed another one of Max's medicines, a potassium supplement. This now brings his list of meds to just over one page long! He is down to five in the morning, one in the afternoon and six at night. Huge progress. Essentially, he is just on the Cyclosporine for immune suppression now (which will probably go for about 6 months post transplant), some profilactic meds (ie anti-viral, anti-fungal and anti-biotic) and one supplement (magnesium). When I think back to the days of his IV pole with four pumps and at least 15 different meds hanging off of it that were going 24 hours, I realize the huge progress that we have made already. Although Max still has quite a distance left to go in this marathon, it is comforting to look back and realize all the miles that we have finished already. I was shocked to realize the other day that this adventure has been going on for almost 7 months now! In some ways it feels like forever but in other ways, it doesn't feel like more than 7 weeks has passed.

On another high note, we got a couple of calls last week from the Make A Wish foundation. One was from the coordinators that have been assigned to Max to get his personal wish facilitated. They are coming out on August 4th to meet with all of us for the first time and really get that process rolling. The other call was from the local southwest Ohio district branch with an amazing opportunity that the Cincinnati Reds are offerring to some local Wish Kids like Max. On July 31st, we will all get to go down to the Reds ballpark for batting practice and meet the Reds before their game that evening! Then, if Max is allowed, we will go to the game afterwards. We have cleared the batting practice portion of the event with Max's doctors but are waiting to hear about whether or not he will be allowed to attend the game. The doctor we had on Friday was not our head doctor so she wanted to check with Dr. Davies before saying for sure. She did comment that Dr. Davies may let Max go, based on how well he is doing. We are hopeful that we will find out more on Friday.

The Make A Wish foundation is an amazing group. They have already really been a bright spot in this difficult journey and we know that they will continue to be as we move forward. Max and Alex are both so looking forward to the Reds event as well as Max's specific personal wish. It is so nice to have something so exciting and fun to look forward to like that when the days get long and tough being here at home and so isolated. As I've said before, I know that once Max is given the "all clear" next spring or so, we will be living it up and enjoying life as much as possible and Make A Wish will be a big part of that, I'm sure!

We did have some worry creep in on us this past week, as I said just can't stay away! Last Wednesday, Ellee came down with a little runny nose and by Saturday, Alex and I both had it. I called our Nurse Practitioner last Thursday and she said that we should still do our best to keep the kids separated from Max if they were sick at all. So, we tried our best to keep Ellee away from Max and then Alex and I away from him this weekend. We were washing hands like crazy and wiping everything down. But, despite our best efforts, Max started a dripy nose on Sunday evening. I called down to the hospital yesterday and talked to our Nurse Practitioner again, fearful that she would say we should head down there for testing, etc. Much to my surprise, they said that we just need to watch Max's symptoms and let them know if he worsens but that he should manage through alright given the IVIG medication that they are continuing to give him every other week, etc. What a relief! Max was so thrilled! We had to get ice cream from Graeters to celebrate last night after dinner! Once again, worry for naught! Why can't I learn?!?

I said to my mom the other day that it seems like I am spending more time on the blog writing about the fun things we are doing rather than the medical stuff...a great sign that things are progressing. Life is not "normal" yet, to say the least. We still can't go outside without Max wearing his mask, he has a double lumen line hanging out of his chest that we have to clean and flush everyday, he takes lots of medicine multiple times a day still, we can't go to church or out to eat at a restaurant as a family or go shopping at Target together, we have to be massive germ-a-phobes in everything that each of us does, we still spend a day each week at the hospital, the kids can only play with their cousins essentially still right now to try to minimize germ exposure and Max won't be able to return to school in the fall. But, despite these continued challenges, we are making progress and everyday we can see the light at the end of the tunnel getting brighter and brighter! We are so grateful just to be together as a family as much as possible and to be able to spend more and more time with our extended families. We know that worry will continue to creep in on us and give us difficult moments but, we have all the faith in the world that Max is going to make it through all of this and go on to lead a full and wonderful life. I picture myself at his college graduation all the time with Matt, Alex and Ellee sittiing next to me, cheering him on...all of us with tears running down our cheeks in celebration of the amazing life that he has led and all that he has accomplished. And then I imagine someone saying to me, "why are you crying?" and me responding, "well, let me tell you a little story about my son out there..." That will be a glorious day, as is every day now that Max has been blessed with the opportunity to live again!

Thank you all for your continued support, thoughts and prayers. More soon...

Peace and love,

Kristi (and Matt, Max, Alex and Ellee)

Tuesday, July 14, 2009

Day +104: A Weekend to Remember!

It's day +104 for Maxer and I'm just now getting to writing about the full weekend that we just had. Our day +100 celebration on Sunday was a huge hit! Max told me that it was the best party ever! We had the entire Cincy based Sherwin-Meyer clan, as you can see in the photo (minus me taking the pic) and we had a ball. The highlight of the day was Max throwing 100 water balloons at two of his uncles and his dad which soon turned into a melee of water balloons and hose squirting for all! Just about no one escaped being drenched and all of our bellies hurt from the laughter. I have a hilarious 17 minute video of the whole event but I can't seem to find a free place to upload it to share it with you all. If anyone knows of such a place, please let me know. We followed up the water fun with a dive into the 5 pound Hershey bar that one of the companies that Matt works with sent us a while back. The kids have been looking forward to eating it since it arrived and day +100 seemed like the perfect excuse! They loved topping it with marshmellow, strawberries, caramel, sprinkles, whipped cream and peanut butter and digging in. They were all on an extra chocolate induced high after dessert!

The Aplastic Anemia conference that I attended was well worth the trip, although I have to admit that I could not wait to get back home from the minute that I left the driveway. My comfort zone is definitely here with the kids and it was very difficult for me to be away, even for just 24 hours! Overall, I felt that the Aplastic Anemia & MDS International Foundation (AAMDSIF) organization did an excellent job planning and facilitating the conference but, I couldn't help feeling "out of place" the whole time. The conference was aimed at those people who are living with chronic Aplastic Anemia, in other words, they do not have a bone marrow match or do not want to undergo a bone marrow transplant for some reason (usually that they do not have a sibling match and therefore the process is much riskier) and thus are pursuing putting the disease into remission with the use of immune suppression therapy (a combination of drugs that helps the body to rebuild the bone marrow with healthy stem cells). The immune suppression therapy does work for some of them but many of them have to undergo multiple rounds before it works and then still live with the possibility that the disease will return. It's a tough way to go, to say the least and made us all the more thankful, once again, for the blessing of Ellee as a match. In summary, the following three things were my biggest take-aways from the conference:
1. We were extremely blessed to have a sibling bone marrow match and did the best possible thing for Max's future by going forward with the bone marrow transplant from Ellee, especially as quickly as we did.
2. Although Max did have the best case scenario for treatment of his disease and we are certain that this bone marrow transplant will ultimately be successful, this experience has changed him forever and we will forever be monitoring his health and keeping an extra close eye on him (ie worrying about his health) as a result.
3. Max's diagnosis is Aplastic Anemia but, now that he has had a bone marrow transplant, the support and information provided by AAMDSIF is no longer what we need. We now can find more useful information and support through the National Bone Marrow Registry's Patient Advocacy group. I had a great talk with a woman at the conference from this group and found them to be extremely helpful and brought home a ton of educational material already.

Matt and I enjoyed a wonderful time at his cousin Megan's wedding on Saturday night as well. It was great to see so many of his extended family members and everyone had such wonderful, caring words of continued support for all of us. We were especially touched when Megan and Todd offerred a special prayer for Max during their ceremony. As Megan's dad and Matt's Uncle Jim said, "it was a very happy moment but, we didn't want to forget about Max." We were both in tears that they would think of him like that and so touched that they honored him in that way and made him a part of their special day.

As you can see, we had another wonderful weekend. We also got great news last Friday at our weekly Day Hospital visit. Max is doing well enough that we no longer have to go down to the hospital on Tuesdays...only once a week visits on Fridays! We were thrilled and a bit shocked all at once! We were grateful to have today "off" and enjoyed spending some time with my sister and Audrey this morning instead of sitting in the clinic room at the hospital!

Things are continuing to progress for Max and all of us. We know that we still have quite a road ahead as Max will continue to be under close medical supervision for an entire year post his transplant and will still experience many restrictions, etc. However, when we realize how far we have come already, we know that a year from now, we will be enjoying life as a family again and looking back in astonishment at how much things have changed, once again, within such a relatively short amount of time. As always, thank you so much for your continued thoughts, prayers and support.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex and Ellee)

Thursday, July 9, 2009

Day +99 (Day +100 Eve): We've Come a LONG Way

It's day +99...somewhat hard to believe that it is here already! As I've explained before, day +100 is a big milestone in the bone marrow transplant process. Generally, it's the first time that more extensive testing of the patient's immune system is done and, generally, progress in the development of the system is found. It's also the point at which the risk of death from the bone marrow transplant process decreases...always a good thing in our book. :) For patients from out of town, day +100 can be really huge because they can sometimes head home at this point and transition to doctor care in their own town.

Unfortunately, day +100 isn't going to be quite what we hoped it would be when this all began but, looking back on the path that we have been down already, we realize that Max has come a very LONG way. We were hopeful that day +100 would bring a few milestones for Max...removal of his central line and the ability for him to play outside without wearing his mask. But, we have learned a lot more as this process has gone on and we now know that removing the central line would not be a good idea at this point. Max is still going to the hospital twice a week for blood draws and on Friday's he is still receiving 3 different IV medications so, without the central line, these visits would be quite miserable for him! I spoke with Dr. Davies a few weeks ago about the central line removal and she is recommending that we do not take it out until we are down to once a month blood draws, at least. As she put it, "we need to keep him comfortable with the idea of coming down to the hospital regularly still at this point." If we added the needles back in, he would definitely not be comfortable! As for the mask, since Max is still on Cyclosporine (his immune suppression medication) the doctors recommend that he continue to wear his mask outside. I am going to revisit this with Dr. Davies when we see her tomorrow and keep asking until they say that he can go without it to play in our yard, etc. It's pretty tough to play in summer heat with your nose and mouth inside a mask so, it will be really nice when Max doesn't have to wear it anymore.

I'm writing today instead of tomorrow because we have quite a big weekend ahead of us, beginning tomorrow. Max and I will head down to the Day Hospital for our regular 8:30 am appointment in the morning tomorrow and plan to celebrate our day +100 with the nurses and doctors while we are there with some special donuts. Then, tomorrow afternoon, my mom and I are heading over to Indianapolis for a conference on aplastic anemia sponsored by the Aplastic Anemia and MDS International Foundation (AA&MDSIF - "Fighting Bone Marrow Diseases Through Patient Support and Research Since 1983"). I am really looking forward to learning a lot more about aplastic anemia and hopefully getting some answers to many questions that I still have about the disease. We'll be there until around noon on Saturday and then will head home. Matt and I are going to his cousin's wedding on Saturday night which will be the first time that we get to see much of his extended family since this all began. We are really looking forward to it. Sunday, we have a big celebration of day +100 planned with our immediate families. Max is ecstatic about his "Day +100 Party" and can't wait to play lots of fun "100" games with his cousins, aunts, uncles and grandparents. I'll be sure to post pictures and commentary about the celebration next week.

Although our road has continued to be a bit bumpy lately, we are so grateful for where Max is and how well he is progressing through this marathon journey. We did breath a sigh of relief on Tuesday when we found out that his engraftment as of last Friday's blood sample was back up to 94.2%! It appears at the moment that Ellee's marrow is winning the "tug of war". His ANC, however, was back down to 500 which is the point at which they consider intervening with a drug called Neupogen (aka GCSF) to stimulate the white counts. The doctors decided to hold off on doing this for now because they don't want to give his own cells the ability to strengthen at all and potentially win the "tug of war" against Ellee's marrow. Thus, we will be anxious tomorrow, as always, to see his counts and know where things stand.

Looking back last night on our journey to day +100 was pretty powerful for Matt and I. We realized how far we have come already. Just 100 days ago, Max was in the hospital, getting ready to undergo the transplant from Ellee and we were nervously anticipating the big day 0. Just over 100 days ago, Max could not support his own blood production. His red cells, white cells and platelets were all at critically low levels and he was being sustained through the continued administration of blood products from donors. He has not needed a blood product since the week after the transplant! With the help of Ellee's marrow, he has been able to sustain his own blood cell production and is well on his way to being healed. We can only hope and pray that the next +100 days lead to the same kind of progress down the healing path that Max has experienced already.

Max is looking and feeling wonderful. He is happy and full of life. Everyday we see him getting closer to the way he was before this all happened. It is an absolute medical miracle and we are so grateful for Cincinnati Children's Hospital and the amazing doctors and nurses and therapists that we have come to know through our journey. We are also continuously thankful for the thoughts, prayers and unending support of you all that have loyally followed our journey. We know that you are there, continuing to root us all on and it means more than you can imagine to all of us.

More soon with some fun pictures, etc from the "Day +100 Party"!

Peace and love,
Kristi (and Matt, Max, Alex and Ellee)

Saturday, July 4, 2009

Day +94: Riding the Rollercoaster of the Bone Marrow Transplant Process

Happy 4th of July to everyone! I hope you're all enjoying a fun summer day of cookouts and fireworks, etc. Unfortunately, it is rainy here in Cincy so we are certain it is putting a damper on the festivities around town. We were able to take in the parade here in Anderson Township this morning which was really enjoyable. Max got in the car to go home and the first words out of his mouth were, "wow, that was fun!" Made our day, to say the least!

We've had another good week but, again, not without its worry and rollercoaster ups and downs. We were down to the hospital for our routine Tuesday and Friday visits, although we were moved up to Thursday because of the Holiday for the 4th on Friday. Overall, things remain good with Max. We did get some especially good news...the neutrafil antibodies that they suspected may be causing his ANC to go lower are not there. In addition, his ANC seems to be stabilizing over the last two weeks again so, we are thankful that one issue appears to be resolved as of now. Unfortunately, we did get some concerning news on Thursday, although the doctors and nurses are telling us it's fairly typical and we shouldn't worry. Max's engraftment percentage (the percent of blood cells being produced by Ellee's marrow vs. Max's own tiny bit that was left) which had been bouncing around between 96 and 99%, has now fallen down to 90%. Our concern, which the doctor's share, is that it fell pretty rapidly this past week. At this point, they are going to keep a close eye on things and see what happens this week. As Dr. Joshi, one of our favorite outpatient BMT doctors said, "We don't have a silver bullet to ensure that we got all the cells out of Max's body that we wanted to before the transplant, we only have shot guns (referring to the chemotherapy that was used to prepare Max for transplant). We used those shot guns and, unfortunately, we didn't get all the cells that we would have liked to. Thus, there is a bit of a tug of war going on in Max's body now between Ellee's marrow and his own. What we need to try to do over the next few weeks is find just the right balance with his Cyclosporine level (the immune suppression drug he is on) to enable Ellee's marrow to mature and take over, without allowing Max's marrow to get stronger or causing him graft vs. host complications, if possible."

Not what I wanted to hear, to say the least. My mind immediately went to, "oh, no...what if this doesn't work and we have to do this over again. That would be my worst nitemare. I can't stand to see Max or Ellee go through anything more!" Thus, the roller coaster ride of the BMT process. It's tough. We are so thankful for Max's progress so far and hope and pray that this too shall pass...but, it's impossible not to worry. We try everyday to turn our worry into prayer or some other positive energy but, it's been tough. We know that they have many things that they can do to attempt to save the graft of Ellee's marrow in Max but, we just hope and pray that they won't have to do any of them. We hope and pray that the issue will resolve itself with time. Only time will tell.

We have done our best to not focus on this situation this weekend and to enjoy some 4th of July fun with our families. We went to a really fun cookout last night at Matt's sister, Monica's house and Max and Alex really enjoyed playing with their cousins, Will, Ben and Jacob. Cousin Andrew was sick so he didn't make it. We have also enjoyed hanging out with my brother, Patrick this past week. As I've mentioned previously, we hadn't seen him in over a year and it's been great to have time to just hang out and play with him (he's in the picture with the boys). My family has been on vacation this past week out west. My mom and dad are with my brother, Mike and his family in Jackson Hole, Wyoming and my sister, Kim is with her family in Thompson Falls, Montana visiting her husband's family. We have all missed each other this week. Being apart is tough right now, even though they need to take vacations and continue on with life. It's hard to be apart...everyone worries and thinks about us back here at home. They know that we would love to be vacationing too! Just another part of the rollercoaster ride. One second we are so thankful to be where we are and to have Max doing as well as he is...the next second we are feeling sorry for ourselves and thinking about how much fun this summer would have been. But, overall, we know that this is temporary and that with time we will be able to be a family again outside of this house and enjoy the wonders that life has to offer.
I don't mean to be negative today, I just want to be somewhat realistic with all of you loyal followers of this marathon adventure. As well as it's gone for Max, it has not been easy. We know that you all know that and we are sustained by your continued support, prayers and encouragement. We know that we need to journey on, taking one day at a time and doing our best to remain focused on the positives, with the hope that Max will be healed soon and able to return to the full life of a seven/eight year old boy.
More soon...happy 4th!
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)