Merry Christmas to all of you! We are so sorry, again, that it has been so long since we've done an update. Hopefully you knew, since it has been so long, that Jimmy has been wonderful, healthy, happy, and very energetic!
We had several appointments in September, and thank God they all went very well. He had a dermatology appointment to check his moles since he is at higher risk for skin cancer, and they all look like normal moles. He will have a dermatology appointment annually, as long as everything stays the same. He had an endocrinology appointment, and his thyroid levels were a bit off so they adjusted his medication, but everything else was perfect. He is at higher risk for thyroid cancer as well, so that needs to be monitored regularly (every 3-6 months). His oncology appointment was a success as well. Jimmy had beautiful results for his blood work and we were so, so, thankful. He is so amazing.
October was fun for him (Ricky and Joey, too) since he got to go apple picking, carve pumpkins and go Trick-or-Treating. He was the cutest tiger we've ever seen. Ricky was a soccer player and Joey was Spiderman. They all looked very nice. We had fun visiting our relatives as we were able to go into people's houses this year (last year we couldn't). All three boys had fun at one house where there was a tractor trailer truck...they got to blow the air horn as much as they wanted. Air horns have been one of Jimmy's favorite things lately, and we all do anything we can to get a big truck to blow it's air horn. We often look crazy while trying to do so, and get a lot of waves from the truck drivers because they think we are waving to the rather than giving them the signal to blow their air horn. One time Aunt Debbie stood along side one of the busiest roads around here (4 lanes:) trying to get the trucks to blow their horns. Jimmy and Daddy are now good buddies with all of the recycle and trash companies that come down our street, and Ricky and Joey often ask their bus drivers to 'beep' for Jimmy. It makes his day!
November was great with Thanksgiving at Grannie's house. It was so nice to be there, but of course everyone missed my father. We were all sure, though, that he would have wanted us to have Thanksgiving at their house since it always has been. Daddy also had his birthday and Jimmy loved to help blow out the candles on his cake. He also loved to eat the cake...sometimes without a fork! Opening presents is always one of Jimmy's favorite, too. Over the fall, Jimmy also became potty trained! He is such a big boy! It was very easy for him and he had only a couple accidents right at the beginning. He is also talking up a storm and continues to play baseball even in the cold weather (both inside and out).
Just last week (December 15) Jimmy had another oncology appointment. Our greatest and most precious gift came in the form of another perfect check-up. We can't believe how blessed we are. Jimmy also had an endocrinology appointment the same day, and with the change in his dose of medication, his thyroid levels are perfect. By keeping this at a safe level, it is less likely that Jimmy will have further thyroid issues/complications. It also is helping him to grow as he should. He will have to take this medication forever, but that is fine.
We still haven't been able to stop thinking about Jimmy's precious donor. We haven't heard back from him again yet, but hopefully we will. The turn around time seems to take about 6 months. If he only knew the profound difference he has made in our lives...he is so amazing. We only have about 7 more months to go until we can meet him! Yeah! The boys are afraid of flying, but they said they would go anywhere to meet him; even across the ocean (which is likely). They still say they will do anything in the world for their little brother, and we all talk about the day when we will be able to meet him and his wife. We all usually end up in tears whenever we have those conversations.
Grannie is just as sweet as ever! The boys LOVE living so close to her and seeing her every day. Time with Grannie is always one of the best parts of their day. Jimmy gets to have Grannie all to himself 3 hours per week as she watches him for us during the time our work schedules overlap. In the morning Jimmy doesn't want me to leave, but sometime in the afternoon he wants me to go back to work! We are all so lucky to have Grannie so close by and such an important part of all of our lives.
Ricky and Joey are doing well in school and just began started their basketball season. It is treat for Jimmy to be able to go this year. He says, "Yimmy pay bakitball too."
On a very sad note, our friend from Maine, Eli, passed away this fall. He fought his leukemia for 4 years with the heart and courage of a champion. We met Eli on 6 West at Children's when Eli and Jimmy got their transplants. His family is just amazing and they are always in our thoughts and prayers.
We thank God and Jimmy's precious donor everyday for the miracle they gave us. We can never thank all of you who continue to pray for and love Jimmy. We wouldn't be here without all of you and you support. We wish you a very Merry Christmas, and a New Year filled with love, happiness and health. Love to you all!
August 19, 2005
"This is as good as it gets...this is what we strive for" are the most beautiful words we've ever heard from Dr. Guinan. These are some of the priceless words she said to us at Jimmy's appointment last Friday at the Jimmy Fund Clinic at Dana Farber in Boston. We were so afraid to hear what she might have to say, given 15 months ago she told us Jimmy had a very poor prognosis, but she basically only had positive things to discuss. She even talked about "when Jimmy is a teenager" (with regards to braces, like any other teenager might need)! If Jimmy needs braces he may not be able to get them because the treatment he received may have made the roots of his teeth small, therefore unable to hold braces if he happens to need them. WOW! What a beautiful thought! We are truly so blessed. She did a thorough physical exam and looked at things as we spoke that we weren't even aware of. For example, she said that Jimmy does not show even subtle signs of GVHD because the bumps on his tongue look good, she can feel his oil glands, his skin is soft, the hair on his arms look good, and the hair on his head was growing in evenly. She looked at everything, and everything looked great! She also commented on how well Jimmy is talking and how developmentally he's right on track!
Long term issues to think about include Jimmy needing to have his skin/moles checked every year by a dermatologist due to the fact that children who receive the same treatment as Jimmy did are at higher risk for getting skin cancer. The cases she's seen have been taken care of by removing the cancerous mole, but it is very important to stay on top of them by being monitored regularly. The word relapse came up only for a few minutes. She said that the largest percentage of AML relapse is within the first 6 months after transplant. The second largest percentage is 6-12 months post-transplant, then the percentage reduces significantly thereafter. She said she's seen 1 case of relapse after 5 years, and another after 10 years. She also said that when Jimmy gets a bit older he will need his lungs tested, and we need to continue annual ECHO's. Also, his growth should be monitored and he should be seen by an endocrinologist (that appt, is Sept.29). She thought that he should be seen here every three months for blood work, etc., since he is just a little over one year post BMT.
The appointment was a grand start to our vacation in Maine. All of us, including Grannie:), spent a few days in Ogunquit and had a lovely time. Jimmy LOVED the ocean and the beach, and chasing the birds. He called the seagulls "ducks" and when 2 of them were fighting over the same piece of food he said, "Bad duck" in a disgusted way! It was so cute! Ricky and Joey lured us all into the COLD water and once we got there we had fun jumping waves. The boys also liked riding the trolley and going on a lobster tour. We sure learned a lot about lobsters! Jimmy also chose to sleep with Daddy (and Joey) one night rather than Mommy and Grannie! Little stinker!
We had a great time but sure felt the huge hole in our hearts since my dad was not physically there with us. We have been to Maine with my parents for 10 years, and this was the first year that Grannie has been there since my dad passed away. It was very difficult, but made easier by having Jimmy there with us (in full swing!). Like Grannie said, "He took one away from us, but He let us keep one, too." What a miracle to have Jimmy. As always, thank you God and precious donor!
July 29, 2005
Hello everyone!! Once again, we are so sorry it's been so long since we've done an update. Jimmy continues to be a happy, healthy, and loving toddler, who is rally beginning to talk a lot! Thank you, God and precious donor!
Jimmy had check up on June 30, with Dr. Homans, and everything was great (physical exam and all lab results were perfect:) His growth is still questionable and being closely monitored, but the thyroid levels (obtained through blood) are now fine, thanks to the daily medication he takes. He also had another audiology appointment in July and he did very well there as well. The audiologist said they do not need to see him any more, unless something comes up. Yeah for you, Jimmy! In the last update we mentioned how Jimmy had a rash around his mouth that we thought was yeast. After being treated with an oral and topical anti-fungal, it did not go away. We actually took him to his pediatrician, and he said that it was peri-oral dermatitis- a very normal 2 year old rash around the mouth. He said that it will probably last 6 months to a year, and then will go away. Jimmy has an annual check up in Boston, with Dr. Guinan, scheduled for August 12. She said that will be mostly an educational session for us. We can't wait to go to Boston so they can see the miracle they helped to perform. There are some wonderful people there!!!
Thanks to all of you who joined us at Jimmy's one year celebration party!!! We had a wonderful time seeing and talking to all of you...our wonderful family, friends, and hospital personnel who helped us get through the hardest time in our lives. Even though it was a rainy day, we didn't let the weather get us down. Jimmy and the other kids, even some adults, had fun getting wet during the celebration. We are so blessed to have had this opportunity to celebrate this glorious event! We all had fun watching Mark Bessette (Mindy's husband) climb ALL the way up the ladder on the ladder truck. Mark and several other fire fighters from the Malletts Bay Fire Department came with their newest fire truck for Jimmy's celebration. It was so great. Jimmy loved to hear them blow the air horn and see the big truck in his driveway! Thank you all so much!
We just wrote another letter to Jimmy's donor...2 page limit again. If he writes back we'll be sure to let you know. It may take a while again since we think it has to go quite a ways! We also have a few little gifts for him and his wife (total has to be less than $25.00- another donor center rule) that we will bring with us when we go to Jimmy's appointment in Boston. Our connection there will pass them on to them.
In more summer news, July was VERY busy with baseball...thanks to Ricky being chosen for the 9-10 All-Star team for Colchester. His team did well and practiced a lot!!! Practice and/or games occupied 6 out of 7 nights per week. Joey learned how to swim without floaties and we are so proud of him! Grannie is just as sweet and precious as ever and is doing well. We try to meet in one of our yards a few times a week for a little break to have a picnic. We are so lucky to be so close to her!
I (Jen) will be returning to work in late August. It is a very bitter-sweet thing for me. I feel sick to my stomach at the thought of leaving Jimmy, since I've barely been away from him. Yet, last year when I requested a year's leave of absence, I prayed that I would be able to return to work the following year because Jimmy was healthy enough for me to be able to do so. Now, I am. Luckily, he will not have to go to daycare, and will be able to stay home with Daddy while I'm at work (just like the other boys did). He's been a real Daddy's boy lately so I'm sure they have lots of fun together. They will get a lot of one on one times since the rest of us will be at school/work- lucky Daddy!
We hope you are having a wonderful and safe summer with your family! Thank you all so much for everything, as always! Love to you all!
June 27, 2005
Hello everyone! We are so sorry it's taken this long to do an update. Jimmy has been very well (with the exception of a yeast infection near his mouth). Along with Jimmy doing beautifully, we have some more GREAT news! WE GOT A LETTER FROM JIMMY'S PRECIOUS DONOR TODAY!!!!!!! He sounds like such a sweet, sweet person. We cried so hard as we read the loving, touching, priceless words he wrote. It sounds like he is from another country. He is so amazing, just like we thought. He said he (and his wife) "live on an old farm and have lots of animals (mini pigs, horses, dogs...) and we like to drive in our carriage. I work as a carpenter." He said he thought that, "Maybe one day Angel wants to know who the fellow is who is now a little part of him." Therefore told us that bit about himself. (We had to call Jimmy a different name in our letter to him, so we called him Angel).
He is so amazingly great. He also said he would love to stay in touch so we can keep him updated on how Jimmy (Angel) is doing. Gloriously, he said, "Who knows maybe one day we will be able to look each other in the eyes." He definitely wants contact and also said, "as soon as this will be possible we would love you to come and visit us."
He sent us 5 four leaved (as he said) clovers as they "look at them as heralds of good luck". They we laminated and so beautiful. He also thanked Ricky and Joey for their beautiful "lines" they wrote to him. They thought Joey's (bow and arrow) was really funny and Ricky's lines "hit us right into our hearts."
He is SO PRECIOUS. We knew he would be. He said that it was very important for us to know that he did not have to make any sacrifices donating the marrow and had no pain, and that the stay at the hospital was a pleasure. He sounds funny, too. He said this way he got "an extra week off from work". He also said, "If I will ever be the person to donate marrow again I will not hesitate a second." What an amazing person.
When they first received our letter he said, "We so excited to get the letter we didn't fall asleep before " and "never read a letter that did touch us so deep." And, "The first reaction was tears of joy and a shiver down the spine. We took the letter up from the table at least a hundred times and reread it all the time. The feeling of joy was just overwhelming.
Sorry if this sounds like rambling on and out of order, but this is so precious to us. We've been waiting for this day for so, so long. We called Dana Farber (our connection) this afternoon and they said his donor center has a 2 year waiting period for direct contact so we will have to correspond this way for another year. We hope this precious connection lasts forever and they can look each other in the eye someday.
Jimmy has another big appointment this Thursday, with the same tests as last time. We pray this appointment goes just as well as the last one. We are inspired by this precious letter, and are so grateful that July 6th is only a few days away. Oh, Jimmy had a great time at his birthday party and LOVED being sung to and blowing out candles on his cake! We'll try to get pictures up soon.
There are a lot of other things going on, but just wanted you to know about the precious letter, and to invite you ALL to Jimmy's one year celebration!!! It will be at our house on Saturday, July 9th, beginning around . EVERYONE is invited and we would love you see you. We are so blessed to be able to have this celebration and thank the Dear Lord for getting us here. THANK YOU ALL FOR YOUR LOVE AND CONTINUED PRAYERS FOR JIMMY!!!! We wouldn't be here without all of you!
June 2, 2005
HAPPY BIRTHDAY JIMMY AND GRANNIE!!!!! Two of the sweetest people in the world share their birthday today! Jimmy is an energetic 2 and Grannie is a youthful 64. If some of you remember, 32 is our lucky number, and Jimmy's 2nd year multiplied by 32 equals Grannie's 64 years! It is going to be a good year. We are planning on taking Jimmy fishing (that's what he said 'yes' to when we gave him choices of what he wanted to do during the day) and shopping to pick out some toys. Ricky and Joey are also going to stay home from school so they can share the whole day with Jimmy. As soon as they woke up they came into our room and watched over Jimmy until he woke up. Their faces looked like they do on Christmas morning;they were so excited! They are planning on singing "Happy Birthday" loud and often to Jimmy, and have commented on how they can't believe he is 2. As we recall Jimmy's first birthday, which was at the hospital, we are so grateful for all of the wonderful doctors, nurses, and Child Life who made it the best day possible. They are so wonderful. Jimmy actually already got a card from Alison yesterday and an e-card from Dr. Louise this morning!
On a medical note, Jimmy had his appointment last Thursday, and for the most part, it went okay. All of the usual blood tests came back fine, thank God. His kidney's (Bun.17, Creat. .3), WBC (7.02), platelets (452), hgb. (11.6) and ANC (3,370) were all fine. They also did an ECHO of Jimmy's heart, and we are so blessed that his heart is functioning normal. One of the extra blood tests included looking at his thyroid function. His thyroid stimulating hormone (TSH) was too high therefore, they needed to put Jimmy on a medication that he will need to take daily for the rest of his life in order to help him grow better (he was in the tenth percentile for weight and off the height chart this time). People who receive TBI (Total Body Irradiation) typically have thyroid problems because the thyroid is extremely sensitive to radiation. Initially, we were down about this, but then as we looked at the big picture we knew that it was the best test to come back abnormal. It is just another daily reminder that life with never be the same as this we give Jimmy his medication and remember what he has been through, and the beast called leukemia. Jimmy's next appointment will be June 30, and he will need another IV blood draw in order to draw a larger amount of blood to test the same things they did last time.
Jimmy has been very energetic and lively recently. He pretty much gets to do what he wants doing the day, like riding on the tractor to go see Zak and Annie, play baseball, read books, eat, sleep, take baths, and learn new words! He still enjoys going to Ricky's and Joey's games and playing with the other baseball player's siblings behind the fence. As Jimmy fell asleep last night we told him how he wasn't even here two years ago, and now we can't even imagine life without him. He is such a sweet little boy. Thank you God and precious donor!
