As you know, Jimmy’s stool tested positive for rotavirus…that was on 10/30 and we were quite happy about it because that could explain the CT scan.However, all other stool samples since then have tested negative for rotavirus.We told you we could see Jimmy’s stool output increasing slowly…into the 40’s and now into the 50’s again.The rotavirus, like any other GI bug, sparked the GVHD again.The doctors put Jimmy on another drug, CellCept, for the GVH.It is another immuno-suppressant….that’s the only way to treat the GVH and further increases the risk of fungal and viral infections.We have also been worried about Jimmy’s WBC…it was great around 10, 000, but now it is in the 4,000’s and his ANC (absolute neutrophil count) keeps dropping steadily as well.The drugs for GVH should not make his ANC decrease as they do not affect neutrophils…only lymphocytes.They tell us not to worry about the WBC and ANC but we are clearly seeing a trend here and can’t help but worry as to why these counts are dropping so steadily.Knowledge and experience tells us that it is infection or relapse.They tell us not to worry….much easier said than done.They looked at Jimmy’s ‘uric acid’ level and if it was high it would indicate a marrow with blasts.We were told that the uric acid level was normal.
We have been seeing his energy and activity level decrease over the past couple of days and knew something was leading us in the wrong direction again….the rotavirus reigniting the GVHD.Thursday morning Jimmy felt absolutely horrible…he vomited more than ever, and then he spiked a fever in the afternoon.As you know, a fever for someone in Jimmy’s condition is very, very dangerous.They immediately drew blood cultures to see if any infection will grow/show in his bloodstream.They also added more antibiotics for coverage of infections.So far he has not spiked a fever again, but is maintaining a low grade fever.
This downward turn comes in the middle of one of the best times of our lives.The extreme ranges of our emotions are immeasurable.Being able to meet and talk to Sven and Yvonne, or “Ven and Von” as Jimmy says (that /Sv/ is so difficult) have given us so much happiness.They are the most wonderful people you could ever imagine…so sweet and kind and funny!Jimmy truly has some of the characteristics of Sven: a wonderful sense of humor, a heart of gold, generosity of soul and so much love and kindness to share.We have been able to instant message using a web cam and the experience has been overwhelming.For us to see them, and for them to see Jimmy, was just incredible.They blew kisses to each other and they lit some fire crackers for the boys to see.Jimmy often yells, “hello”“hello”...it seems like Jimmy feels and acts the best when we are ‘talking’ to them.We also got a beautiful letter via e-mail (sent in German and translated by Sandra) from Yvonne’s family; it was so loving.We have a new family in Germany and are so inspired by them.We communicate whenever we can but the time difference is a bit of a challenge…they are 6 hours ahead of us so when it is finally a bit calmer here (early afternoon) it is getting to be late in Germany and we hate to have them stay up too late.They are so wonderful and we have so much in common.We can’t wait for our next communication; the bond was instant and connection overwhelming.
November 6, 2006
Do you believe in miracles?We do…again… thanks to angels on earth half way across the world in Hamminkeln, Germany: Sven and Yvonne!It is them who you now see on Jimmy’s home page!We had the privilege and honor to talk to Yvonne early Monday morning (1 am our time and 7 am their time) and later in the day when Sven got home from work!!!!They are so wonderful and amazing we can’t even believe it.This weekend and today has been one of the most breathtaking moments of our lives as we were able to communicate with them.The birth of our 3 boys, Jimmy receiving precious marrow, and talking to Sven and Yvonne are truly the greatest moments of our lives.We do not have the words to explain our emotions to you and I think they feel the same way; it is so unbelievably powerful.All morning we talked about them and Jimmy said, “I want to tell my donor…um….I want to tell my donor thank you and love you”. And he did …from his heart! It was so beautiful.Ricky and Joey also talked to them and they were very teary when they got off the phone.It was very emotional for all of us; we have been waiting for this day for so long.We feel like Sven and Yvonne are our new family members!
Shortly after we got off the telephone we did Instant Messaging for almost 2 hours!!We learned a lot about each other and feel like we could talk forever without running out of things to say...there are still so many things I want to know/ask.Ricky can’t wait to IM them tomorrow!We also want to thank our friend from home, Sandra, who is from Germany.She sent an email in German to Sven and Yvonne helping to explain/translate some of Jimmy’s current medical condition to them.We are so grateful to have her help!We shared Jimmy’s website with them so they we able to see lots of pictures!They also even left a message in his guestbook!It is the first time in months that I have had a happy heart.We couldn’t sleep last night but when we finally did fall asleep due to exhaustion, I had a smile on my face and a rekindled glow in my heart; I know Rick did too.
Medically, Jimmy is still the same.The new team of doctors took him off the Octreotide (used to help reduce GI tract bleeding) because one of this liver function tests was increasing rapidly and wondered if it was because due to that drug.Yesterday was a pretty good day and probably one of his best days since we’ve been in the hospital with the GVHD.Jimmy did not walk but he was awake for most of the day.I think he could feel the electricity in the room.Jimmy seemed to have been ‘holding back’ on the stool output and for most of the day and appeared as though he was going to reach a new record for the least amount of stool output for the day.However, at 7 pm the stool turned on very heavily and for 2 hours Jimmy strained ‘on the hat’.His platelets were low and his output was very, very bloody.He was exhausted when he finally finished and ended up at 39 cc’s/kg for the day (the day before was 47).Jimmy got a platelet and blood transfusion over night.We were very quickly brought back to the harshness of what is happening right now but it was a delight to have such a wonderful ‘break’ in our new found family.We know so many of you are thrilled right along with us as we have long been awaiting talking to Sven and Yvonne.Thank you all for always being by our side.
November 3, 2006
A huge ray of sunshine came to us today…something we’ve been waiting for for over 2 years….the personally identifiable information for Jimmy’s Precious Donor 1!!!! We were very, very excited!!!! His name is Sven Bauhaus (pronounced “bow house” and it means ‘build houses’…remember he is a carpenter).He and his wife, Yvonne, are from Germany!WOW!He is now 29 years old (we knew he was 27 years old two years ago at the time of Jimmy’s first transplant).We were given his home and email addresses and his home and cell phone numbers.We emailed him as soon as we figured out what to say.Hopefully we will hear form him and we will keep you posted.
Jimmy’s white count is down a bit again and approaching normal on the 10,000 range.Stool output is still in the 30’s and the rotavirus symptoms are still very present.We will do a more thorough medical update over the weekend or early next week, but wanted you to know about Precious Donor #1 information and how amazing we think he is!!!!! That truly made us smile and cry all over again.We didn’t tell him about Jimmy’s relapse yet but told him Jimmy is now 3 years and 5 months old, thanks to him.It is so true, without Sven we wouldn’t have been able to come to know and love the truly precious and amazing Jimmy.
November 2, 2006
We feel like we need to apologize for putting you on the emotional coaster that we are on; we have no choice and have to go through this but you don’t.It seems so unfair to you because you have been so dedicated to Jimmy and following his progress.Clearly so many of you have him in your heart; he sure fills up ours.
The GI team did not come in Tuesday afternoon but some of the members of the ‘new’ team did (new attending, fellow and resident) and told us that Jimmy’s stool tested positive for rotavirus (virus of the GI tract which causes severe diarrhea- 600,000 deaths per year around the world due to dehydration…20-40 per year in the U.S.).Stool needs to be tested for such viruses before a colonoscopy is performed.This clearly makes for even more muddy water in terms of determining Jimmy’s GVH status.It can, however, be the explanation for the CT scan looking worse and also can explain why Jimmy’s stool output seems to have reached a plateau (in the 30’s) and did not continue to decrease with all of the Daclizumab (all doses are completed now).Rotavirus is a horrible virus to have (symptomatically is very painful) and can tear your GI tract to shreds, as shown in Monday’s CT scan.In terms of infections, it is better than some of the alternatives because it is not systemic and it is not fungal in nature.They suspect that the symptoms of the rotavirus will last at least several weeks and more likely to be several months because the cells Jimmy needs (lymphocytes) to clear this infection (viral in nature) are the same ones that they are trying to kill/control through the GVH treatment.(Remember it is the lymphocytes that help the body fight viral and fungal infections, but also the type of cell causing the GVH…that’s why Jimmy is at extreme risk for those types of infections). They need to try to find an intricate balance between weaning the steroids to prevent the GVH from flaring back up - yet allow the lymphocytes to be produced to be able to fight the rotavirus.There is no other treatment for rotavirus; it needs to run its course.
They also told us that the colonoscopy will be put on hold until the rotavirus is gone because it is too dangerous to perform at this point.Once the rotavirus is gone, it is likely that Jimmy will have a colonoscopy to determine the status of his GVH.Jimmy was put on ‘contact precautions’ simply because his stool was being tested for viruses, and now that it has tested positive for rotavirus he will remain on precautions until it is gone.That means that Jimmy will not be allowed to leave his room (he can’t even go into the hall) until it is gone, and everyone entering the room needs to wear a gown and gloves.Also, the rest of us are at risk for getting it since it is highly contagious.
We’ll try to keep you posted as things change and, as you know, they do very quickly.Thank you all from the bottom of our hearts for your continued thoughts prayers and love.
October 31, 2006
Good news is done; so frustrated and distraught again and again and again and again…poor Jimmy. The positive trend that lasted for almost two weeks apparently didn’t mean much.Stool output stayed in the low 30’s, white count down to the mid-high teens, beginning to be able to have broth, popcicle (clear liquids) then it all turned on again…stool output went up to high 30’s, more blood and more cramping with severe pain.Did CT scan yesterday and bowel wall and GI tract look same if not worse after all of this treatment for GVH (steroids, Daclizumab, etc.); Leslie said it might be resistant GVH.They said they have given Jimmy 90% of what they can for treating the GVH…”he has gotten better, but not better enough” they say.So confused….all seemed to be going quite well and his attitude/energy level was increasing as we’ve mentioned.Need to consult with the GI team again and consider doing a colonoscopy again to see what is going on.They will if it is safe enough but it was not safe enough last time and now it apparently might look worse.Purpose is to get a piece of live tissue to see if the GVH is still active or if there is another process going on that needs to be treated.The bowel wall staying the same/worsening is not good at all; indicates worsening of the GVH.It is supposed to be less swollen and beginning to heal and it is not at all.Jimmy screams now when he is on the hat.They thought as he was beginning to drink that his gut needed to get used to working again therefore causing the cramps.Whole team will come see us this afternoon after they have consulted to see what we can do next.This is just torture over and over and over.Now Jimmy cannot have anything by mouth again, and cannot go into the hall or the garden as he is on precautions while they test his stool for various infections; restricted to his room and nothing by mouth again; how do you explain that to you 3 year old who has been through so much…very hard for him to understand…again in the middle of the night begging for just a sip of water b/c he is “very, very tirsty”.God this is awful.Rick and I stared crying with him and then he stopped b/c he doesn’t want us to cry.He said, “I will not ask anymore, otay Mommy?”He is too wonderful to have to be going through this hell... incredibly discouraging and unbearable to keep getting the worst news possible; no more words…utterly and completely broken hearted.
October 25, 2006
Sorry it’s been a while again…always busy with Jimmy and his needs…Last Friday night/Saturday morning (Oct. 14) dose of the Daclizumab made Jimmy not feel well for 5 days.His stool output was in the 50’s for the most part and his vomiting increased.They did an x-ray to make sure there wasn’t any blockage and luckily there wasn’t.His outlook totally and completely turned around when he got a grand visit from one of his best and dear friends, the Easter Bunny (Maureen Gillard this time…she takes turns with her sister Cassidy)) and her Mommy (Peg).We have never seen such a change in Jimmy.For those five days Jimmy was down and out…we thought we were going backward again, one step forward and two steps back, then the EB came and that was the beginning of a good trend (and still continuing) for Jimmy.They visited Thursday afternoon (EB flew in to Logan from Rochester, NY and Peg drove from VT to meet her here then drive her back to NY) and Friday morning.Jimmy was sooo sooo happy to see them.He knew she had to, “hop and hop and hop” to get here and had to rest during the night and hide under a tree when it rained.They did their usual high five’s and tickling each other and Jimmy read a book to her (G.I. Joe vs. Cobra…he has the whole thing memorized).It was glorious to see a bit of old Jimmy again after his poor five days.
Their visit was followed up by another grand visit from Aunt Debbie and her kids.Jimmy was very delighted to see them and thoroughly enjoys the light up pumpkin (now our night light) and many other treats they brought him (especially a wiffle bat brought from Tommy).He was very happy to see more precious visitors and for the first time in weeks he did the “I love you” sigh in sign language to them; another piece of old Jimmy shining through.They also brought pumpkins for Ricky and Joey to carve so they could have a piece of normal (VT) fall activity.They also ventured to the top of the Prudential building while they were here; something Ricky and Joey have wanted to do since our first transplant over 2 years ago but we didn’t have the opportunity.We also got to see Lilly in person after cutting off 10 inches of her hair to donate to Locks of Love. WOW!(We got to see a picture of her after her hair was freshly cut while holding a beautiful pony tail).What a wonderful thing for her to do, especially at the age of 12 when appearance means so much.Of course it made us cry when we heard of her generous act and saw the results.She looks so beautiful (and quite a bit older too) and we are so proud of her.Michaela also made the same precious donation a few months back.Gestures such as these make our eyes fill with tears and our hearts swell with warmth and pride.Just like so many of you who we know have, for YEARS, religiously donated gallons of platelets: Bill Wycoff and Julie Rutz, and gallons of blood for YEARS: Kathie Knight.What a difference you have made in this world to so many people; you have truly saved lives.
Medically, we see Jimmy’s WBC trending downward (low 20,000’s to high teen’s [today and yesterday]) which is a hopeful sign that the GVHD is ‘getting better’, though it has tricked us several times before.Also, his stool output has decreased to the 30’s (cc/kg/day) again and even had a day (Monday) when it was 29.7 cc’s/kg/day...that was his record day.We’ll see where these trends go and what other course of treatment we will need to do.We have one more dose of the Daclizumab this Friday, the 27th (last Friday’s dose on the 20th was not followed by several horrible days that we expected given past trends; a nice surprise).Leslie also started Jimmy on Octreotide, a medication to help reduce GI bleeding and luckily is not immunosuppressive.It appears to have made a difference and reduced the amount of blood in Jimmy’s stool output, but there is still a lot more than there should be (Jimmy still needs blood and platelet transfusions VERY frequently).The Octreotide is given every eight hours but can also be given continuously.If every eight hours does not work just how they want it to we may have to begin to have a continuous infusion, which would mean an additional line (either a PICC line which will last for weeks or an IV which would need to be changed every few days) since there wouldn’t be enough time in the day or ‘room’ for continuous infusion given all of the other medications Jimmy needs (some are not compatible with each other and can not be infused with each other time while others can).The dose of Octreotide was doubled on Saturday in hopes of it working and avoiding another line placement.They will give it a few days to ‘work’ and then we’ll need to reassess.Either new line for access would be horrible for Jimmy…another dressing change per week if he gets a PICC line, or being ‘poked’ every few days if the IV is used.We hope and pray, yes pray, that the Octreotide every 8 hours will work…but of course will do whatever we need to .
A positive aspect for Jimmy’s state of mind is that he is able to be ‘unhooked’ for about 2-3 hours in the afternoon.They concentrated the TPN and lipids (artificial nutrition) so he receives the same nutrition but over fewer hours.Jimmy seems to really enjoy this time of being unhooked.He usually chooses to be pushed in the wheelchair in the hall (as he flings rubber bands), sit up to do an art project (with all of the great supplies you have sent Jimmy), look through his Spider Man playing cards (from Uncle Frank and Aunt Dottie…who send him boxes filled with wrapped presents so he has something new to open EVERY day) or we’ve even made 2 very quick trips to the garden.Sometimes he plays on the computer and sometimes he sleeps.Whatever is he doing, at least he is unhooked for a short time.His cramps also prohibit him from doing even a quite/calm activity for an extended amount of time…his cramps will last for months.Oh, Jimmy also walked across the room four times in one day, walked down ½ the hall one day (he was very weak, slow and labored but persevered…we asked him if he wanted us to carry him back to his room.He said, “No, I can do it” as he took deep breaths).He also took some swings at a ball with his new wiffle bat a few times.He is very unsteady on his feet and needs to slowly regain some of his strength; it tore our hearts out when he didn’t have the strength or balance to swing the waffle bat and fell down the first few times he swung; it was just heart wrenching given the strength you all know he had, especially when it comes to baseball.He seriously used to be able to swing aluminum bats that Ricky uses (and one of his favorite aluminum bats given to him by Matty Cuce) and now he is having trouble with a wiffle bat.
Given Jimmy’s recent positive trends, Leslie said he can start drinking a bit to try to work his gut.Monday he was able to have 10 cc’s (2 teaspoons) of Pedialyte and today he can try some ‘fruit punch flavored formula’ since he was able to tolerate the Pedialyte.Apparently it comes in a ‘juice box’…we haven’t seen it yet today but it doesn’t sound very appetizing.We cannot believe how accepting he is of his limitations for the most part.At times Jimmy gets VERY UPSET when he cannot take a drink of water.He gets very thirsty in the middle of the night and there are many times that we have to tell him he has to wait to take a sip of water.He cries, and cries, and even has hit me a few times and says, “I hate you” and wants me to get away from him.No wonder.The simplest of needs he can’t even have as he wishes.
Another positive trend is that Jimmy’s morphine use is way down.He is off the continuous infusion and, as you know, is in charge of pushing the button as he needs a bolus of morphine.He was using 7-9 mg. when we first came in, went down to the 4 mg range, and is now between 1-2 mg’s per day.Leslie said the lower Morphine use will also help give his gut some motion.This is her last week of being the attending physician and it feels like we have taken some positive steps (sometimes it feels like one forward and two back, nonetheless) while she has been on service.She is just brilliant.There will be other attending physicians for three weeks then Leslie will be on for another three weeks…so good to know.Luckily, as the director, she is consulted with when there are big decisions to make with GVH.
As our months of stay in Boston increase, we continually ask Grannie, Ricky and Joey if they want to go back to Vermont since our length of stay is unknown, yet clearly extended for months.They unanimously say no and want to stay in Boston as long as we need to.My mother has spent more and more time with the boys and has been their sole provider of nurturing for the past couple of months.We are so, so grateful for her and her unending love.It has been six months (as of yesterday) since we officially knew Jimmy had relapsed.He/we have been an inpatient at the hospital (either at Flether Allen or Childrens) for all of that time, with the exception of about 3 weeks [intermittently] during July.We look out the window and can’t really tell if it’s hot or cold but can tell the seasons are changing based on the clothes we see people wear and the decorations in the hall.
Jimmy still says he will, “fight, fight, fight dis bad virus”.He is so incredibly strong and never, ever ceases to amaze us with his continued strength.We know he gathers it from so many of you.We read your messages to him and he says, “Eveybody is pwoud of me”, and “eveybody wufs me”.We say oh yes, they sure do.Thank you so much.Also, thank you to so, so many of you who have sent Jimmy treats by mail…we’ve received packages from California, New York, and many from Vermont.There are too many people to mention, but as Jimmy uses/plays with the gifts you’ve sent we remember who and where each of them came from…just like wedding gifts…you always remember no matter how long it’s been.Could we also ask you favor?Since we know the power of your prayer, please add a precious and beautiful baby girl named Chloe to your prayers.She spent her first birthday in the hospital (just like Jimmy…his 1st and 3rd birthdays).She relapsed 3 weeks after transplant and now they are trying to invite GVH for her in attempt to attack the leukemia cells.She and her family have a very special place in our heart, as do the families of Grace, Lia, Trevor, and Tyler (who are all doing well after transplant and have gone home).All of these amazing children were Jimmy’s ‘neighbors’ through August and part of September but we got to see many of them leave and are now returning to their own homes.Thank you all, again, for everything.The depth of our gratitude for everything you have done for our family goes beyond words.We are so lucky to have you in our lives.
October 16, 2006
Jimmy’s been napping with Daddy this afternoon so I have time to write again…Very scared of today…Friday the 13th…trying to let it slip by fairly uneventfully.Jimmy needed blood and platelet transfusions over night.Third dose (of 5) of Daclizumab is due today at 6pm but they will hold it off till just past midnight so it’s not given today.WBC today is 34,000.Jimmy’s stool output was 49.6 cc’s/kg/day yesterday but is much more so far today compared to this time yesterday, almost double… (24 hour totals go from 7am to 7am).Jimmy was awake most of the morning and did a bit of coloring and writing, played his new fishing game, and played with his magnets while sitting on my lap, but frequently needed to stop to go to the bathroom.Leslie let Jimmy be in charge of his own morphine boluses, and he can now “push his own button” on the morphine pump when we hand the cord to him.Most 3 year olds are not able to do that, but sweet, smart, perfect Jimmy knows when he needs it.We used to have to wait for a nurse to come in to push and it was agonizing waiting for them to come as he screamed in pain as he continues to pass large pieces of intestine.We are not allowed to push the button ourselves, the patient needs to be coherent enough to push their own button…like we can’t push it while he’s sleeping and squeezing his eyes together when he’s in pain b/c he’s not awake enough to do it himself…either the patient or a nurse needs to do it; not parents.
We were all SOOO happy to see my mother again yesterday.She had a bit of a dry/scratchy throat so was not able to come visit us for almost a week.We also kept Ricky and Joey away for most of that time in case they got sick as well, but luckily they did not.Jimmy was very happy to see his ‘Ma’ and blew some bubbles with her.He always loves doing anything with Grannie.We know he is very sick if he does not want to sit up and do something with her, even if just for a very short time (Play Doh is another one his favorites to do with Ma).We are so lucky that my mom is here with us, not only this time, but throughout our entire first transplant as well.We truly could not have done any or all of this without her these past 3 years.She has been another parent to our 3 boys; lucky them (she is much more patient then we are).Since we are going to be here so long this time we do not expect that sweet woman to put her life ‘on hold’ to stay here so long with us but she is certain that she wants to stay.She is truly a saint and irreplaceable.
Jimmy still says beautiful, sweet, but heartbreaking words just after going to the bathroom, “I am perfek (perfect)”. We always tell him that. We have to separate the urine from the stool and he always says, “Do you want to see my pee?” that’s in the paper cup. He also always asks, “Do you need to poshin your hands?” (Do you need to reposition your hands) b/c we hold his little butt so the hard edges of the plastic hat don’t dig into him (so he’s resting his butt on our hands). While waiting for his blood pressure to be taken, zillions of times a day, he says, “Is it perfek?”We always say yes even if it is 126/98.How can you tell that precious boy anything is not perfect.He says, “Do you love the color?” (of the stool) b/c when there’s a lot of blood that is not good.“Did I unt (grunt) easy?” Leslie thinks some of the blood is coming from the immense strain of pushing and grunting and talked to him about breathing through the pain (deep breaths and closing his eyes) and trying to push ‘easy’.He will try to do anything asked of him and is working so hard to get through this and get home… he wants to live and has so much love to share.He loves life so much when he feels good…the time of remission between transplants was glorious…everything was just a wonder and fun-filled for him (we did make sure he had fun)…so many memories that we have and they must happen again.He just goes on to melt our hearts, “I wuf you, I wuf you so much.I wuf Mommy so much.I wuf Daddy so much.” he says in the middle of the night or any time of day after recovering from going to the bathroom.He is just incredible.Gotta sign off, Jimmy just woke up and ‘gotta go’.
October 12, 2006
Sorry it’s been a while…nothing has really changed.After using some healing oil from Aunt Frannie and cousin Pam Jimmy’s stool output decreased a bit…they waited 3 days to start the new medicine to see if it was a new trend but it was not.Started Daclizumab (new drug) Friday night, got it Monday night, and will get it again for the next 3 Friday’s. Stool output has increased almost steadily since Saturday.Jimmy’s highest stool output was at 104 cc’s/kg/day (104 is the most important part), decreased to the 50’s and 60’s over time, then into the high 30’s after the healing oil, now is in the 50’s and 60’s again.They want it to be 20...a number that would indicate that the GVHD was getting better.Seems as though it is going the wrong way at the moment.He is still in a lot of pain when he goes…we don’t know how he continues to do it.He says, “I am going to kill this ‘virus’.”I don’t know where he gets the continuous strength.(Doc’s have told us that they themselves could NOT go through what he is going through…so much pain…if you could use enough morphine to stop the pain you would be in a coma, they’ve said.They said they think Jimmy has such a high tolerance for pain b/c that’s all he knows…he’s been fighting his whole life…they are truly amazed by him and continually tell us.) Jimmy’s white blood count (WBC) is still too high, but seems to fluctuate between 25,000-40,000.Lower indicates the GVHD is getting better.Today is 32,000.One positive thing though is that his mood and interest in activities has increased a bit.He is talking some now (didn’t at all for a couple of weeks) and smiles daily and even giggled a bit here and there (when Daddy tickles him).He also is trying to play little jokes on us like he used to, like kicking our butt if we bend down to pick something up, etc. Jimmy is soooo wonderful, his heart and soul are just pure perfection. He also has been wanting to sit and strum the guitar a bit.Jimmy also walked across the room the other day.He hasn’t walked for weeks.Every now and then he wants to go in the hall and he usually rides on Daddy’s shoulders; never walks.We are going to be here for a very LONG time; months, not weeks…we don’t care though, of course.Leslie Lehmann is the attending for 3 weeks (so glad she is on…very, very good at what she does) and yesterday she told us that, “There are no long term survivors after second transplant if they do not have GVHD.”So you need to have GVHD after second transplant for long term survival…we got it…but TOO MUCH.Still petrified beyond imagine of infections…they are routinely doing blood cultures twice/week to check for infections.Jimmy’s cheeks are very, very puffy from the steroids…like when he was retaining fluid form leaky veins.
Oh, story too precious not to share…we told you we couldn’t pray anymore….last week Rick decided he wasn’t going to receive communion anymore (Father Nee- the reverend at the hosp.) often comes in to visit to pray and w/ communion.One day last week he asked if we wanted to pray together…before we could answer, Jimmy started shaking his head ‘yes’ (first time he’s done that) to answer for us.We prayed and then Father Nee took out the communion and asked Jimmy if he wanted to give it to us.He did, and it was the most precious host I have ever received.Rick, of course, could not deny Jimmy and received communion even though he swore to himself that he never would again.Jimmy has done it a few more times since then, and thoroughly enjoys it.He now says, “ody ist” (The body of Christ) when he gives it to is.We cry every time and our heart aches.He is truly amazing.He has also asked to use the healing oil, and for Father Nee.One day we couldn’t figure out what he was saying….he was asking for someone…we thought of Brian (the guy who comes to play the guitar on Th., or the clowns that come on Fri…..but he was asking for Father Nee. He said it perfectly, but we just couldn’t get it b/c it was not someone we expected him to ask for.The secretary paged him and he came and we used the healing oil and Jimmy gave us communion.He truly takes our breath away and makes our hearts ache…he is unlike anyone we’ve ever known.Oh, another thing that is trying to keep us going…a while back Mindy told Rick a story about a woman who had cancer…she told us to ask for a ‘sign’ from God, but it needs to be specific….A few days ago I said to myself, Okay, I need to know if everything is going to be okay…I need a sign… I need Sara (that day’s nurse) to say, “32” to me (was my dad’s favorite/good luck # as you know).Just ‘32’.I thought NO WAY will that ever happen…I wondered how could bait her to say it….but knew I couldn’t, it had to be natural.Less than an hour later 2 people were in the room, one was Sarah.Jimmy was sleeping so I innocently whispered to Sarah, “Can you ask Jenna how much the last stool output weighed?”Jenna heard me ask Sarah, whispered the amount to Sarah, and then Sarah turned to me and said, “32”.I almost died. I couldn’t believe it, then I told Rick how I had asked for a sigh and that’s what it was…. these 2 things make us feel a bit energized and we need to take it day by day and try to keep our eye on the prize….JIMMY—our wonderful, precious, priceless little boy, Jimmy.
Still can’t thank you enough for all of the support you’ve giving us.The prayers, cards, letters, baskets, treats etc. are so wonderful and appreciated more than you know.Ricky and Joey loved their afternoon with Wendy and Ken and their kids.Jimmy loves his treats that he gets to open and likes to show them to the nurses.Thank you so much for helping us to get through this almost 3 year, unending nightmare.We’re so thankful for all of you and your love.
October 4, 2006
We don’t have the time, energy, strength, or accurate thought process for complete sentences…..Decrease in stool we saw last week has increased again…high dose steroids NOT working to stop the GVHD, they need to try another drug (running out of choices)…major side effect of new drug is INFECTIONS…fungal infections, keeps the immune system SUPER suppressed for months, kids can’t handle their own bodies.Morphine use has doubled.SO much blood coming out in Jimmy’s stool he needs blood and/or platelet transfusions every day….still in sooo much pain.Jimmy is very weak and skinny, he hasn’t stood up or walked for 3 weeks.Steroids cause muscles, arm and leg muscles mostly, to deteriorate.Also cause puffy face and belly.Hardly smiles, but did when Mike and Sharon came to visit.He sat on the bed and played Play Doh with them.
He breaks our hearts w/ things he says, “I want to bix (fix) my body”, “This is hard” (what honey) “Getting this bad virus out”.After throwing up says “Sorry”. Often asks, “Am I a good boy?”We wonder if he thinks he’s being punished. “I wuv you so much”, Always is panting while talking b/c it’s usually while cramping or going to the bathroom.
Mike and Sharon brought Ricky and Joey pants/long sleeves from home.They don’t want them to be washed b/c they smell sooo good, “They smell like home”.They started tutoring last week….school work is being sent to them from their teachers.
Not sure what to do…..we’ll be here longer and longer as things aren’t changing/get worse, but we’ll stay forever if we need to. New drug is over a course of 22 days… So sorry we haven’t been able to respond to emails/phone calls from you…we’re either holding Jimmy on the ‘hat’ or something…thank you somuch for everything; love, prayers, support is appreciated MORE THAN YOU’LL EVER KNOW.
September 29, 2006
Jimmy began the high dose steroids Wednesday night at midnight.It was and will be a two hour infusion for 5 nights.To give you an idea of the immense strength of this treatment, when we first were readmitted to treat the GVHD, they used 24 mg’s (of the same steroid) per day for 10 days…it didn’t work. The five nights of this course of treatment are: 360 mg’s, 180 mg’s, 180 mg’s, 90 mg’s, and 90 mg’s respectively.That’s all and more than the body can take.Any bit of immune system that Jimmy had will be gone for a couple of weeks.The steroids specifically kill the lymphocytes (the ones attacking Jimmy’s body), a type of white blood cell that helps you fight viral and fungal infections, therefore, it is viral and fungal infections that Jimmy will be extremely susceptible to.In a way we ‘invited’ the GVHD by getting the KIR mismatch from the donor, in hopes of getting graft vs. leukemia (GVL), which is different from GVHD, but apparently often go together and are hard to keep separate.Not a lot is understood about GVL at this point in research.
Jimmy’s stool output has decreased over the past two days, which is a good thing, but the trend needs to continue.Yesterday he went fewer times, about half as much as before, and the 24 hour volume of output was reduced.He is still in a lot of pain and is now on continuous morphine, rather than just at night.They said that GVHD in the GI tract is one of the most painful things they have on the floor, and that the morphine does not really do a lot for the pain.Leslie Lehmann (the director of BMT who we had one of our first meetings with) said that we are in for a very, very, long haul.We will be in the hospital at least through the month of October, if things go ‘okay’.One attending physician (the one who said it was the worst CT scan of the bowel he has ever seen) was very pessimistic and told us that since the first course of treatment didn’t work (it had a 70% chance of curing the GVHD) that this second course of treatment only had about a 40% chance of curing it.It is very risky, but a chance we have to take, because otherwise we know the outcome, just as we had to take a chance on this second BMT.We have to tell you, though, that seeing Jimmy go through this new, gruesome disease in so much pain we wonder if we have done the right thing…how cruel and selfish of us to put him through this.It is such torture.You can see the pain in everyones eyes; the boys and my mom also cannot stand to see Jimmy go through this.
Jimmy is so sick of having test after test….yesterday he needed another EKG of his heart (heart rate slowed way down [in the 60’s] the morning after the first dose of steroids) and another X-ray of his stomach.Although Jimmy isn’t talking much, when the portable x-ray came in to the room he screamed, “No x-ray mama, no x-ray mama”.He needed ‘a push’ of the button (morphine) to help calm him down.It tears our heart out.While the steroids are being infused, Jimmy needs to be hooked up to the monitor with three leads (‘stickers’ on his chest) to monitor his heart rate, respiratory rate, etc., and his blood pressure is taken every 15 minutes…he has no time to rest.He is taking a nap with daddy now.
To back track a bit (I always say there is too much to write) Jimmy was supposed to have a colonoscopy last week, and then this week but it was cancelled due to the severity of the GVHD that they saw on the CT scan.The purpose of the colonoscopy was to get a piece of live tissue to biopsy to ensure that GVH was what we needed to treat (instead of an infection…though all stool and blood cultures have been negative for infection, but treatment for infection would have been totally the opposite of treatment for GVHD).Although the doctors were 98-99% sure GVH was the culprit, the risks of the second course of treatment (which we are doing) are so severe that it is recommended that the colonoscopy/biopsy take place.After seeing the CT scan, it was deemed that Jimmy’s intestines were so severely affected that it would not be safe to perform the procedure, and that we needed to proceed with this treatment even without the procedure taking place…something they don’t like to do.You would be appalled to see what Jimmy was releasing from his body.He was truly shedding large pieces of his intestines that have been killed by the lymphocytes.They were up to a foot long and looked like the intestines you see on Fear Factor.We could not believe this was coming from his precious little body.We could always tell when large pieces of tissue were going to come because Jimmy’s pain was unbearable.His face was contorted with pain while he screamed, “My stomach”, it is indescribable.The watery part of the stool is also like nothing we’ve ever seen before…our poor, poor, baby..
Thank you all so much for helping us from wherever you are.We feel so weak right now but try to gather strength from all of your words of love, encouragement, and prayers; we can never thank you enough.We so hope that none of you ever, ever have to experience such pain in seeing your children suffer and go through such diseases.Diseases like these do NOT know boundaries, so continue to appreciate and be grateful for all the ‘little things’ that may seem bothersome…bringing your kids to practice, their laundry, the spilled milk, the grass stains in the baseball uniform that you have to wash every night (from Ricky’s awesome All-star season which we never got a chance to mention), checking their homework and homework folder… just everything.That is what’s most important in life; all of our children and taking care of and loving them…they are the best
September 27, 2006
We have never seen such suffering; Jimmy is very, very, sick.Jimmy was in so much pain every time he went to the bathroom.For almost 2 weeks, Jimmy has had severe cramps and diarrhea approximately 40-45 times per day; it was totally and complete like labor pains, but the output was horrendous looking.He tried to breathe through the pain, grunt, hold his stomach, and would sometimes rest his elbows on his knees with his palms up, resting his eyes or forehead on them.After about 10 minutes of ‘labor’ (every half hour) Jimmy would say, “done”.We’d lift him up off the ‘hat’ and he’d ask if ‘there was any in there’.After we showed him what had come out, in an exhausted voice he’d say, “No wonder my stomach hurts so much”. After we dress him he asks, “Can I rest now?”We say yes and he says, ”tank you”.The poor, poor, little boy; we truly have not seen anything like this.The mucositis was horrible, but we knew he would get through it and it would heal in time; that is not the case with GVHD…we don’t know that it will get better in time and it not yet so far.They now need to proceed to the next level of treatment which is very, very risky.With all of the extreme pain and saying, “I can’t keep up to this poopin’” Jimmy never once cried from what he has been experiencing for over a week.The first time he cried was when we told him he could not eat or drink anything (Saturday).Even though he was in so much pain he, at times, felt hungry and thirsty, though he isn’t asking for anything to eat anymore.At the beginning Jimmy was limited to clear liquids (popsicles, chicken noodle soup broth, water, etc.)As of Saturday he could have NOTHING to eat or drink.He heard the doctor tell us (and him) that he was unable to take anything in by mouth and that was the first time he cried; and he cried so hard.He said, “but I am starvin’” When he understood that he was limited, again, through tears, he said, “Can I have some chicken noonel soup brof?” We said no, and he kept asking if he could have the simplest of things…water, ice, etc. No was always the answer.We tried to explain that his belly needs to heal and that right now he couldn’t have anything.As he wept he said, “Don’t talk about it, it makes me cry” Our hearts were torn out, but are now broken because of the severity of the GVHD.It is very serious.Now Jimmy is saying, “I don’t beel good”and h e NEVER says that.They can treat it with HIGH dose steroids which will make Jimmy’s immune system VERY weak and extremely susceptible to infections.They cannot guarantee treatment will work and we will be here for at least 6 weeks if everything ‘works’.We will stay here forever if we need to. After looking at Jimmy’s CT scan yesterday, the attending doctor said it was the worst (most severely affected) intestine he has ever seen.Oh my God, we are in a horrible situation.
Jimmy has wanted to sleep ALL the time for the past week.He is only able to grab about 20 minutes at a time between stools; day and night.The morphine helps him get a 1-2 hour stretch of sleep overnight without getting up so that helps a bit.His in’s and out’s are measured very closely and compared every 4 hours and are extremely high..It is likely that Jimmy will be on the artificial nutrition for weeks…a threat to his liver which we’ve already seen in his labs, but that seems minor compared to the severity of the situation of the GVHD.Jimmy has had an x-ray of his stomach, an ultrasound, and a CT scan within the past few days in attempt to look for other infections because his WBC (white blood count) is extremely high at 43,000 (normal 5,000-15,000).
GVHD stands for graft vs. host disease.The new marrow is the graft and Jimmy is the host.The cells that the new marrow is producing do not recognize Jimmy’s precious body, sees parts of it as foreign objects, and is attacking it.It attacks the cells that are rapidly dividing in the body; the skin cells and GI tract cells.That’s why Jimmy has GVHD in those two areas right now; that is where the cells most rapidly grow.A little bit of GVHD can be a good thing because the hope is that any remaining leukemia cells will also be destroyed as they are also rapidly growing cells.However, we are past the point of minor GVHD and are in severe GVHD.We don’t know how much more he can take or how much more we want him to take; his poor little body is in so much pain and has been for so long.It seems like all he does is fight.He and daddy made a plan that when we get home he is going to run over the ‘virus’ with his dirt rocket, burn it in Grannie’s fireplace, let the bus run over it,smash it with a baseball bat, etc.He does still have some fight left in him; we’ve never seen such an amazing person.He truly is a super hero.
We’re not sure we know how to pray any more so if you can take that over for us that would be great.Rick is better at praying than I am, though.Ricky asked us yesterday if we questioned our faith, as he said he did.This GVHD needs to be controlled………. we’ll try to keep you posted bit by bit.Thanks so much for the care packages so many of you have sent.The treats you send Jimmy make him want to sit up and open them.Love and thanks to you all.
September 20, 2006
Jimmy did everything and more asked of him and was discharged from the hospital on Monday, September 11.With broken hearts we inform you that Jimmy was readmitted to Childrens on Thursday the 14th (after spending two of his three days out of the hospital at the Jimmy Fund Clinic...we could see him get worse every day).At first the doctor’s weren’t really sure what was happening: (infection or GVHD) but Jimmy was extremely tired, dehydrated, had lost his appetite, had a rash and significant diarrhea.After a short time it was evident that Jimmy has acute graft vs. host disease of his skin (as shown by the rash) and of his lower G.I. tract (as shown by the appearance and severity of his diarrhea; 40-45 times per day with extreme pain).GVHD is apparently on a grading system of severity (1-4) and we were told Jimmy’s is stage 3- more severe.He is being treated with steroids in attempt to stop the GVHD and so far we have seen a change in his skin but not in his lower G.I. tract….it needs to be controlled.We have also been told that it can take approximately a week for the steroids to help with the G.I. tract GVHD.It NEEDS to work.Another one of our biggest fears is happening.We have never seen a person suffer so much in our lives.It is just too much to ask a little precious person, any person, to endure.Jimmy is in so much pain.He is on morphine again and the TPN (artificial nutrition) again.He has lost approximately 4 pounds since we were admitted in August.It is just horrific; we can’t stand it.We’ll try to keep you updated but there have been problems with posting the updates.We wrote one on the day he was discharged (11th) but have been unable to post it.Perhaps this one will work.Please continue to pray for our darling boy.Thank you so much.
September 11, 2006
Thank you so much for Jimmy’s messages!He said, “Wow, everybody sendin’ me messages” it was so precious.Other Jimmy quotes from the past few days…some happy and some sad:
“I so hate you, I so hate you” while shaking in anger with a red face when I tried to give him some oral meds and change his blood pressure patch.
“Can we maybe stay out here a while” with begging eyes when we got to leave our floor and go to the garden area of the hospital outside.
“Can I weave hospital now?” after taking an oral med. (we told him once he gets used to taking his meds orally, eats and drink we get to leave the hospital and go jump on the bed at the hotel with Ricky and Joey.
“Ha ha doca’s” as he ate some bites of tomato sandwich.
“I have to put my mask on” when we told him we could leave the hall to get to the garden.
“Do I have to change my dressing change” EVERY DAY in a pleading voice in hopes the answer is no.
Jimmy has made some HUGE steps and met some milestones the last couple of days.His morphine pump was removed… so no more morphine! Yeah! While he was on the morphine we’d often ask him if he “needed a ‘push’” (that is a bolus of morphine which gives a quick extra dose of morphine when you push a button.As Angella said, “a push” should mean ‘on a swing to any three year old’, and not a bolus of morphine.Now it will mean a push on the swing (when we’re able to go in public or get home to our own swing).The artificial nutrition has been gone for a few days and Jimmy’s appetite has increased and he has been drinking more.He has lost 2 pounds since we were admitted but hopefully he’ll be able to at least maintain this weight rather than losing weight at this point.Jimmy has also converted to taking ALL of his meds by mouth rather than IV form through his central line.He has to take 14 oral meds per day and that is still very challenging.He has thrown up several times along the way and I’m sure it will continue a bit.His oral meds are for: nausea, an antifungal, 2 for controlling graft vs. host disease, thyroid med, blood pressure med, magnesium supplement etc.He is doing a great job though, and after tasting them we don’t blame him for not wanting to take them and/or throwing up.The last 3 days Jimmy has been able to leave his room/floor and go outside to the garden.Jimmy really enjoyed going outside, it was like he was in Disney and had a whole world to explore.We were so nervous though…people, germs, dirt, etc.
We’re saving the best for last…..Jimmy is getting discharged from the hospital today!!!!!!!(He is excited to go to the ‘Bes Wessern’ and ride in the back seat of the van).It feels so rewarding but we are soooo scared.Now what? We have done everything we can and now we are praying that this precious marrow will allow us to keep Jimmy with us forever.We have asked so much of him and his precious little body and he never, ever ceases to amaze us.He truly takes our breath away and we can’t even describe his strength to you; he renders us speechless.
For those of you who have asked for our address, another one of our homes away from home, we will be at: Best Western Boston,
342 Longwood Avenue, Boston, MA 02115
.We have to stay in the Boston area for approximately a month, as long as all goes well, so Jimmy can be closely monitored by the Jimmy Fund Clinic and Dana Farber.He will have several appointments a week there.He is not allowed to go in any other public places so we will be in our room, the van, or the clinic for most of the next month.It is very likely (it happened last time) that Jimmy will get fevers and we will have to be readmitted to Childrens for a couple of days while Jimmy gets put on antibiotics and we worry about infection.As always, our 3 worries will be infection, relapse and graft vs. host disease; we will have to take one day at a time.
We will not have computer access while we are away from the hospital but we will find a way to keep you updated.Thank you so much for your continued love and support; it has meant the world to us.
