It has taken days to write this so please bear with the dates/confusion in time.

After days and weeks of extreme anxiety/stress/anticipation/heartbreak/fear/numbness and waiting, and waiting, and waiting for doctors to meet among themselves, and then with us, it has been strongly recommended that Jimmy get a ‘loop ileostomy’.  It is like a colostomy except it involves the small intestine (above the partial obstruction) rather than the large intestine/colon (that would be a colostomy).  This is a surgical procedure which is typically done at one time, and as one procedure, but since Jimmy is at extremely high risk for infection they are going to do it in two surgeries.  The first surgery will be done on Friday morning (19^th) at 10 a.m. and will take a couple of hours.  The second surgery will be on Sunday and will be much shorter.  The first surgery involves two incisions; one of which will be several inches down Jimmy’s precious little belly where the surgeon needs to look for a ‘healthy enough’ piece of small intestine to use for the ileostomy, and the second incision will be where he brings that ‘loop’ of small intestine out (lower right side of Jimmy’s belly).  It will stay covered and given two days to ‘heal’ until Sunday when a slit will be made in that loop (second surgery).  That is where, hopefully, most of Jimmy’s stool will come out and be collected in a pouch (which will have to be drained very frequently and changed every 48-72 hours- it is very sticky and you need to use adhesive paste which was described to us as being like cement…it will hurt when it is changed).  Since this outlet will be above the partial obstruction hopefully it will prevent the stool from reaching the obstruction thereby relieving him from some of his pain.  They think a lot of his pain is when the stool tries to pass through the obstruction, but they cannot be sure how much of the cramping is in fact due to that reason.  We will have to see…it is such a risk….  Also, this procedure will not prevent future obstructions from occurring lower in Jimmy’s GI tract.  This is something that will likely be in place for months, or years, as Jimmy’s colon tries to heal.  It can be reversed and reconnected at a later time if possible but of course there would be other major hurdles at that time, if possible….we cannot go into that now.

We are completely petrified, as we always have been, of infection and now yet another great chance of infection related to this procedure – and coming out of the procedure itself.  This option has been the only one presented to us as a possibility of relieving some of Jimmy’s cramping; he cannot go on like this anymore.  He has begged and pleaded to us, anyone, for help and this is our only choice in attempt to help him at this point.  He says, “I can’t do it any more” and “Oh Dod (God), Oh Dod” as he puts his palm of his hand on his forehead while in pain as he goes to the bathroom.  He says, “This is very hard work” and is complete exhausted.  As we’ve said they are uncertain whether or not it will help with his cramping but ‘in theory’ it should and we were told by the surgeon that “if it works it will work big” – it is almost ‘all or nothing’ in terms of success.  If it works, Jimmy will be able to eat again, after some time, and he would get relief from his pain and suffering – two major goals and clear improvements in his quality of life.  This was presented to us as an option so again a choice we had to make.  They said if infection occurs from the surgery it is usually within a week of surgery and could be either local (places of incisions) or systemic (whole body).  Jimmy stared a new antibiotic, Meropenem, on Wednesday to help prevent infection.  What a horrible decision to have to make...no parent should ever have to make these decisions – ever.  UGH!

Jimmy was originally scheduled to have the surgery last Friday but there was not an ICU bed available so it had to be postponed until this Friday.  We were told that it is policy that whenever a 6 West (BMT unit) patient has surgery there needs to be an ICU bed available and there was not one last week.  Jimmy may or may not need to go there right after surgery or if something else happens thereafter.

The need for a colonoscopy has always been present but always ruled out because of the risks- until now.  Friday Jimmy is going to have that procedure done as well since he will already be under anesthesia and a surgeon will be present.  The GI doctor will perform that procedure and get a few samples of tissue from Jimmy’s poor, sick, lower colon to biopsy (to look for GVH or a different active process).  If active GVH is still present it means more treatment in the form of more immuno-suppression…major suppression for many more months.  Please don’t let there be active GVH.  Leslie’s theory is that there is not active GVH and Jimmy’s stool is still very watery because the large intestine/colon is so badly damaged from the GVH that it cannot perform its function of absorbing the water and producing formed stool.  Dr. Guinan (the director of BMT at the time of 1^st transplant who we always talked about) thinks there is still active GVH and more immuno-suppression will be needed.  Please don’t let there be active GVH.  We were told it would take 24-48 hours to get biopsy results but that those would just be preliminary (given it will be done by a weekend pathologist) and final results will likely take 3-5 days since a GI pathologist will look at Jimmy’s tissue and there will be discussion about him and his history.

Jimmy will also come out of these procedures with another NG tube so all of the contents on his stomach can be drained.  It will be able to be removed when it is deemed that the ileostomy is functioning, so probably a week or a bit more…it all depends.  Jimmy hated the last NG tube and it was very irritating and made him vomit more.  Tape is used to try to prevent it from slipping out and it is very painful when it needs to be changed since he has so much hair on his beautiful face from his medications.  The tube can also come out or become misplaced any time Jimmy coughs or vomits.  If it moves an X-ray is done to check placement and may need to be taken out and a new one put in if it is not in the right place.

Since Jimmy has had so much chemo that was toxic to his heart, he needed to have an ECHO before the surgery to make sure his heart was functioning properly and was healthy enough.  Luckily the results showed his golden heart is still functioning within normal limits.  His heart glows on, but we knew that.  His ‘preciousness’ continues and brings us to tears every day.  We don’t know how he continues to be so loving as he has endured so much pain for so long.  It is his pleas for help that forced our head and hearts to go forth with the ileostomy, even given the risks...he can not go on like this any more.  People do not let their animals suffer so we can not decline on an option that may help relieve some of Jimmy’s suffering, though is poses huge risks... it’s major surgery for Jimmy although it wouldn’t be for a typical person.  His words, “I hate dis”, “I don’t want to be in belly pain anymore”, “I can’t stand it”, “I can’t stand this birus”, “Dis makes me mad and sad”, “Dis makes me cry, you?” made us go this route.  He is very frustrated and sick of being sick…he (and we) cannot bear his pain anymore.  He has moments where he is very strong and says, “I am dunna ush dis” (I am gonna crush this) as he shakes with clenched fists.  It’s just all too much.

We get all of our strength from Jimmy and all of you because we cannot summon the strength on our own anymore.  We receive so many heartwarming and personal letters, cards, emails, and gifts it is remarkable and unbelievable; we are in awe and to a point of speechlessness.  The most recent letter we received (yesterday) was from our 19 year old neighbor, Aaron.  Our 3 boys love to play with our neighbors when we are home; any season of the year they find a sport/game to play outside.  Their age difference does not seem to matter and everyone from Jimmy’s age to ‘kids’ in their early twenties hang out together.  Anyway, Aaron wrote Jimmy a 2 page, hand written letter that hit so many issues right on; it made us all cry our eyes out.  We could not believe the words in his letter.  He, like all of us, said he would trade places with Jimmy in a second so that he could have a chance at a happy, fun and care-free life.  We were touched by this beyond words.  He, like so many of you, can never be thanked enough for always being here for us; through good times and bad.  We truly feel lucky to have you as our wonderful, irreplaceable support system- thank you so much.

It is likely that we will not be able to write updates (ourselves) over the next week or so, but we will try to have someone else type something up to let you know how things went and/or are going.  Thank you so much for everything and for the extra love, prayers and positive energy you’ll be sending on Friday.  Love to you all.

January 6, 2007

Sorry so long without updates…many reasons-at the beginning b/c busy with many lovely visitors and ‘getting out’ on a leave of absence for a couple of days (for an hour or two got to drive around and go to a reservoir).  All the while Jimmy WBC steadily increasing, but he was acting okay, up to 39,000 on Dec. 30- they did a scan last Friday (Dec. 29) and it showed a partial obstruction in Jimmy’s small intestine, a very sick looking colon (not healing) and something unusual at the base of his lungs (though they did not think it’s active infection, rather maybe something in the GVH family).  No other evidence of infection- liver, kidneys and spleen looked good.  Much discussion about surgery and where to go from here w/ the obstruction.  Jimmy had a NG tube placed Sunday night to help with decompression and draining his stomach contects to try to prevent something catastrophic and irreversible from happening in the middle of the night.  Tube was in for a few days then removed Thursday night—didn’t seem to change anything except he vomited more.  He cannot eat anything at all anymore and can only drink 2 ounces water/day.  Yesterday (Fri.) was a HORRIBLE day- very crampy for several hours and we thought something bad was happening.  Jimmy is on 2 antibiotics to see if it will help bring the WBC down…it is still fluctuating…yesterday was 19,000 today (1-6) is 26,000.  May be resistant to this family of antibiotics and may need to try another one. Another number followed in daily labs is ‘lactic acid’ - high number indicates dying tissue in the body.  Steadily increased for 4 days (indicating obstruction may be cutting off blood supply to intestines, so parts were dying) – Lactic acid has now decreased for 3 days and in high normal range.  They will not test that every day now.  I think WBC may have to do with something viral….ALL cultures negative, were drawn or 4 straight days….they look and look and look for something horrible.  We know the possibility of it being something horrible is likely, but why always.  They think the WBC is connected to the obstruction…I am not so sure.  Jimmy has had episodes like this before like we’ve told you...this was not the first time it’s happened, but was the first time captured in a CT scan.  Did scan to look for infection b/c of WBC and found obstruction. All x-rays do not show the obstruction but do not get as good of a picture.  Stool output seems irrelevant at this point, was 46 after Jimmy passed a piece of tissue and been in the 20’s thereafter.

MUCH DISAGREEMENT among the teams of doc’s about what to do.  We saw 8 different surgeons and they all had a diff. thought of what to do.  Teams even ‘argued’ in our room.  We are sooooo confused and don’t know who to listen to.  Surgery is very dangerous but may be needed depending on what happens.  Jimmy has been through so much I can’t even tell you.  His pain and suffering seem to be unending.  Just like we said….baby steps forward, now big steps back… Plans change daily and depends on who you talk to…. It is completely frustrating b/c these are HUGE decisions that need to be made.  Last weekend was horrible - even the attending (Dr. Guinan who was on for a week) was totally frustrated with what was happening and all of the differing opinions and how this was being handled.

Going to try to deal with the immediate issues here (surgery/obstruction where to go w/ the GVH) for a few more weeks then try to continue treatment at our home facility, FAHC.  Have been here so long and everyone agrees that as long as it is safe the move to our home facility would be best.  Been working on treatment in hospitals for 9 months since relapse and don’t know where we’re going or how much longer it will take.  Jimmy has been the most amazing person we have ever known throughout this.  He somehow tolerates these interventions and does whatever we ask of him.  He is truly beyond words.  Again yesterday through screams and cries he begged for, “Somebody help me, please”, “What are we gonna do?” , “Help me Dod, please help me”, “Anybody help me”.  Kids and families suffer- still don’t know why.  All around us still- daily.  Our hearts break for them all.

Thank you SOOO much for your continued love and support.  And yes, we did receive the packages you sent (if you asked) and many others over the holiday season.  THANK YOU a million times – still not enough.  We were and still are completely overwhelmed by your kindness.  We can NEVER thank all of you for everything and are touched more than you will ever know.  There are many amazing people in this world and we are lucky to have them as our friends and family.  The families we have met on this floor never cease to amaze us.  We try to gather strength from all of you and will try to keep you posted though things change literally change by the minute.  Love to you and thank you for your love, prayers and encouragement.

December 7, 2006

We were hoping for a calm and peaceful night for Jimmy Wednesday night but it was just the contrary.  Jimmy was unusually crampy in the evening and was up going to the bathroom quite a bit (stool output ended up at 29.9 for Wed.).  At 11:30 we noticed the dressing on his line was coming off, so at 11:30 we changed his dressing.  Midnight labs showed Jimmy’s potassium was ‘critically’ low so he needed a bolus of potassium which involves a being watched on the monitor (3 leads [‘stickers’] on him to monitor his heart during the 2 hour infusion.  As I write this (I was on the 3^rd paragraph) the nurse came in and said when they re-checked Jimmy’s potassium (and other electrolytes) at 7 pm, it was still low after this morning’s bolus, so he needs to have another one tonight.  He will not get much sleep again. He truly needs to sleep when he can.  His body has worked sooooo hard, and he needs to rest.

Thursday morning was Jimmy’s typical, poor, screaming/crying/cramping morning made worse by a severe bloody nose.  His platelets were okay at midnight labs so it was probably from the dry air in the room and picking his nose.  It poured out of his nose and went everywhere.  Some dripped down his throat and he obviously swallowed some because almost immediately he started vomiting the blood he swallowed.  It was awful.  Midnight labs also, unfortunately, showed his WBC back up to 13,160 so if his WBC hits 15,000 again he will start the Vanco. again.  Other lab results were wacky because of the changes they made to his TPN.  We have also have forgotten to mention this whole time that for about 3 weeks Jimmy has had thrush (a yeast/fungal infection) in his mouth.  It is what some of your little babies may have gotten.  We have been treating that with Nystatin ‘swish and spit’.  His Ativan dose was increased because he is becoming tolerant to his current dose.

Thursday afternoon Jimmy was in quite a good mood.  Brian, the music therapist, came in as he does every Thursday and Jimmy probably had his best music session since the GVH admission.  Most of the time when Brian is here he can barely sit through one song b/c of cramping and trying to use his ‘deep breathing’ technique to help him though the pain.  Jimmy did get cramps and had to take a few breaks but he also played a little drum and sang Puff the Magic Dragon.  It made us cry; he is so precious.  They also made up a song about alligators (because Grannie brought Jimmy a cool alligator toy this morning).  It went to the tune of “Five little monkey’s jumping on the bed” and Jimmy said when the alligator fell off the bed they bumped their eye, nose, toe and ‘toof’; again, so precious.  After music Jimmy made a paper airplane then had about 5 bites of bagel and 3 bites of mashed potatoes.  He then wanted to go outside so we went to the garden/basketball court and he watched the boys play ball.  Then Rick had an idea, he asked Jimmy if he wanted to go down a slide that they have there (we’ve never been on it).  He thought about it a while then said yes.  We carried him over and Rick put him at the top of the slide since Jimmy cannot climb up the ladder, then he hesitantly wiggled his butt to make him go down.  It was a very short slide, one you’d put a much younger child on, but Jimmy did it about 5 times then he was done and wanted to go back to his room.  When he was finished he said, “That was fun;his face was priceless.  We hope someday he will go on the big slides again, at Airport Park and climb up all by himself.  As I read what I have written it sounds like Jimmy has a lot of freedom but he does not.  In a 24 hour period he is ‘unhooked’ from his IV pole for approximately 4 hours, from 2 pm to 6 pm.  It always changes as new medications are added or changed.  Within the 24 hours period, at the moment, Jimmy receives the artificial nutrition for 12 hours (has been 14,16, 18, and 24 hours) and 17 medications through his tubes: 5 of which are 2 hour infusions, another 5 for 30 minutes, and all others are various infusion times.  Blood and IVIG takes four hours and platelets take 1 hour.  Even when Jimmy is unhooked he often wants to go to sleep, but that is okay.

In the elevators on our way back up to our room there were three people (which I hesitated to ‘let’ on the elevator with us b/c we try to get one with just us on it due to germs.  Jimmy always wears his mask but it still makes us anxious).  One woman had a sticker on saying that she had just donated blood.  I thanked her and then her husband said that she actually donated platelets.  Of course we got teary again as we told them that Jimmy has received platelets every day for several weeks, and of course blood very frequently.  My mom went to donate blood on Wednesday and we are so thankful for her to that.  Someone will be very lucky to get her sweet blood.  We found out that when Children’s runs out of the blood/platelet supply, they have to go to Rhode Island to get more. Wow- I had no idea.  When we got back upstairs Jimmy went to the playroom to paint for a few minutes.  Then, of course, he was tired and wanted to just watch a movie but fell asleep shortly after we turned it on.  We were glad to see that Jimmy’s energy level was higher than the past 2 days.  He still did not walk today (or play any ball) but maybe tomorrow if he feels up to it.

Wednesday evening Rick, Ricky and Joey got to meet Julie (Doris’s daughter who we previously mentioned) and her husband Jesse.  They boys are thrilled that they will get to spend 1 ½ to 2 hours per week with them.  Julie and Jesse said they will do whatever we want them to do with the boys…tutor them, take them out for pizza, go ice skating…whatever.  It will be a great opportunity for them to break away from us and have something to look forward to.  Thank you so much for spending time with our two older boys.  Also, thanks to Peg and Melissa/Ruth we were able to convert our email from Adelphia to Comcast, so now our email address is @comcast.net rather than at adelphia.

Speaking of the boys and our family, we really appreciate your kind words but trust me; we are NOT what you say/think we are.  We all get impatient with each other and Rick and I argue and do NOT feel like good parents most of the time.  We are always here for Jimmy, but not Ricky and Joey; thankfully my mom is and always has been throughout the past three years.  Imagine being with your spouse, almost non-stop, in a tiny room, for 8 months (and many more to go)…and never knowing the fate of your baby.  It would be very challenging to be together all of the time under normal circumstances, say nothing about in this situation, so believe me; we do get after each other.

Again, speaking of our baby, you see him with Santa (and Rick).  As we’ve mentioned, Jimmy has grown from the TPN, has a puffy face and belly from the steroids, and extra hair from his medications.  However, what miraculously has not changed given everything he’s been though, and hopefully never will, is the beautiful essence of his heart and soul; they still radiate from him in his everyday actions.  His little smile and gentle movements light up our life and puts a glow in our heart; he melts us.  I have several ‘sweet Jimmy’ stories but his bolus will start soon and I want to get back into bed (on the couch) with him so I will have to save them for another update.  I have now made a list of things to share with you in a folder called, ‘future updates’ and I will try to add one to each update of I have time.  If not, I will focus on Jimmy’s status.

Jimmy and all of us, of course, are very looking forward to our upcoming visitors.  The soonest is Friday: Mike, Sharon, Michaela and Abby.  With huge thanks to Paul and Ann Goldman, Rick, Ricky, Joey and Mike will be going to a Celtics game Friday night.  They have very special privileges and I will discuss the details in the next update (the bolus is here) and as you can imagine they are all very excited to go.  Thank you all for thinking of us, and we do know there are MANY of you who pray and think about Jimmy even though you do not know him.  Thank you all so much, you are wonderful.  And thank you all so much who have mentioned that you already have or are going to donate a blood product!!!! Be very proud of yourself and please know that that donation is likely the best gift you could be, and will be, giving to someone this holiday season; it is truly priceless.

December 6, 2006

Yesterday was a pretty unremarkable day for Jimmy; he’s had better and he’s had worse. He was sleepy and crampy in the morning, as usual, and when he got unhooked he wanted to go to the playroom for a bit. We were there for a shorter time than the previous couple of days as Jimmy got crampy and couldn’t sit in the chair any longer, and he wanted to come back to his room. The only different thing he did yesterday was add on a lightly toasted bagel (with a touch of margarine, also new) to his menu, per Leslie. He had about 6-8 small bites and that was all he could handle for the day. He has not been drinking very much lately. Oddly enough Jimmy is able to keep the few bites of soft solids down but any water he drinks seems to come back up. Since he’s been drinking less (only about 2 ounces per day) the vomiting has decreased but we’re not sure if it will increase again when he begins to drink more. Jimmy’s stool output the last 2 days were 30 and 26. Jimmy needed a blood transfusion from 2 am to 6 am, and he received a platelet transfusion from 11 am to noon due to bloody stool.

At rounds this morning Leslie said that they are going to discontinue the Vancomycin as Jimmy’s WBC is back down in the 10, 000 range and his ‘overall picture’ is better than this weekend, including temperatures nearing the more normal range. If he begins to have signs like over the weekend they will begin the Vanco. again. She said it sounds like Jimmy did indeed have some kind of an obstruction over the weekend but it seems to have worked its way out. She also mentioned the different nutritional options that we may be facing in the future, all of which we did not like. She said it will take months for Jimmy to be able to eat enough on his own to get the proper amount of nutrition, and that he can not stay on the TPN and lipids (artificial nutrition through IV) ‘forever’. He may end up needing an NG (naso-gastric tube; going from nose to stomach that gets taped on the side of the face) as a way to receive nutrition. We can not stand the thought of that. Also, while Leslie has been on service (her last day is Friday) she did a 10% wean of the steroids (she also decreased the CellCept, too, remember) so Jimmy is not on as much immuno-supression as before, though the other drugs, mainly the Daclizumab, is still ‘active’ in his system and will suppress his immune system for approximately 6 months. Leslie also said they will reduce drawing the ‘routine’, twice weekly cultures to once per week, unless of course Jimmy spikes fevers, they will automatically draw then. She also thought that next week they might wean the Ambisome, anti-fungal medication used to try to prevent fungal infections, to 3 times per week (vs. daily). Ambisome accumulates in the body and Jimmy has received sooo much for sooo long that “he probably has enough in his body to last 50 years”.

At this point, and in this situation, usually no news is bad news because I do not have the time, energy, strength, or thought process to write updates. This update has taken me 5 hours so far because I continually have to stop and restart due to Jimmy’s needs (sleeping with Rick but he wakes up with cramps and/or needs to go to the bathroom) and other various situations in the room. Now, Jimmy is actually ‘better’, though he is still very sick, very vulnerable and has a very long way to go. Mid November was indescribably horrible, worse than what’s been happening lately. From your messages I can tell you are getting a slight picture of what’s going on and you can tell how sick he currently is; just know that Jimmy was much worse a few weeks ago when I was unable to write. Currently we seem to be taking a couple of baby steps in the right direction, as we have done before, and hope we do not have to ‘take one tiny step forward and 5 giant steps backwards like we have done in the past. We asked Leslie where she thought we were in this whole process/timeline of GVH and she thought maybe a little bit over half-way though. We try to remember that there is a light at the end of the tunnel though most times it is very hard to, as we are overcome by unbearable, non-stop worry and stress. After this morning’s discussion Rick feels like we are ‘at the beginning’ of the tunnel (I am still outside the tunnel but can see it) but neither of us can see the light at the end; it is always tainted by the thought of the future possibilities.

Thank you so much for your messages and please let us know if you have any questions that we’re not answering or if something is unclear. We still read all of your messages to Jimmy and he loves to hear them. We are still getting many calls, cards and emails from home and you will never know what this means to us. As always, thank you for helping us ‘get through’ this wretched time.

December 4, 2006

The weekend attending physician is also an infectious disease doctor and decided to put Jimmy on Vancomycin, a ‘big gun’ antibiotic because of his constantly elevated temperatures (though technically not a true fever at the moment), and his increased heart and respiratory rates. They also drew another set of blood cultures to test for infection in Jimmy’s blood. With all of Jimmy’s vomiting he is in unable to keep his blood pressure medication down so we have been struggling with high blood pressures again (that had been under control for about two weeks). Jimmy’s stool output for Fri., Sat., and Sun., were: 15, 24, and 39 respectively. His white blood count also went up to 15-20, 000 over the weekend (it had been holding steady between 5K-10K for a while). Higher WBC typically indicates infection or in Jimmy’s case, possibly worsening of the GVH, or Leslie also said that it could have been from a little blockage (suspicion over the weekend, hence the x-ray) that collected some bacteria. We hope for a downward trend in WBC in the upcoming days and no more signs of blockage. Jimmy did not ask to eat anything over the weekend which isn’t a good thing…she wants him to be hungry as it is a sign of feeling better…at the moment.

With the negative medical issues and severe vomiting came a positive sign in Jimmy’s behavior, for the most part. On Sunday he was awake from 5am to 1pm and did various quiet activities during that time (watch a movie, toss a ball while sitting on the couch, listen to music etc.). He had cramps but they did not seem as frequent or as severe. His eyes looked clearer and he smiled a few times. He also went in the hall to use his radio control car he got from Santa and his elves who visited on Saturday. A veteran attending from ped. oncology (different from BMT unit) was Santa and the BMT fellows (his elves) visited and brought 2 gifts to the patients and their siblings. Ricky and Joey each got a very nice basketball and all 3 boys got a set of headphones (that’s what Jimmy wanted to do at 5am…listen to some music). He was also a bit witty on Sunday; he held a BIG eyeball ball up to his eye…it was so cute and of course in the right spot.

Last night Jimmy got Ativan every 2 hours and slept from 9 pm to 6 am, which is a HUGE record. He went to the bathroom in his diaper and after we changed him he went right back to sleep. He also was woken up for b.p. med.’s and vitals but went right back to sleep after that as well. Jimmy is back to his typical, poor, morning so far today and he is not happy but is quite sleepy and crampy (and is napping with Rick, that’s why I can write). Joey brought a toy gun for Jimmy to play with but he was too weak to pull the trigger all the way and got very frustrated. Jimmy’s stool output was also higher and bloody this morning but tapered a bit this afternoon. He still is getting platelets every day and a LOT of blood drawn therefore blood transfusions every couple of days. Which makes us think of something… many of you ask what you can do for us; it would be wonderful if you were able to take the time to donate blood or platelets somewhere nearby your home and THANK YOU if you already do. So many people/children are in need of these precious, life-saving gifts. We would be in serious trouble, in fact Jimmy would not be here, if he were unable to receive these blood products that others have so generously donated. Jimmy is to get 3-4 units of platelets when he needs them, and sometime they are only able to send up 3 units (and even from 2 different bags) because of a supply issue at the hospital. It seems as though the Red Cross always seems to have a shortage of these precious products during the holiday season, so if you could take the time to donate, and maybe even in Jimmy’s honor, that would be greatly appreciated, extremely generous, and life saving!

In the afternoon Jimmy went to the playroom and painted for about an hour. He wanted Grannie to go with us so Rick took the boys for a while. He had a few cramps during that time but did not have to leave to go to the bathroom (he went in his diaper). When he got back to his room he had a few bites of plain spaghetti and some sips of raspberry water but most of the water came back up. He was again Grannie’s boy and wanted her to “Hold you me.” Also, for the first time in a long time, Jimmy was interested in ‘wrestling’ with Ricky and Joey who were getting after Rick. Rick called for help from Jimmy, so he slid to that end of the couch to get involved and help Rick out. His movements were slow but he left some fingernail marks on Ricky face. The 3 boys hugged when they were finished.

Jimmy is getting some of his hair back and it is all over his body, just like last time after transplant. The Cyclosporine and one of his blood pressure meds (Minoxidil-Rogaine) are causing hair to grow where it typically wouldn’t. Just like last time, after he is finished with those medications, it will fall out in places that it shouldn’t be.

Today Jimmy received a beautiful John Paul II rosary from Nancy and Steve Lamothe, a sweet Colchester family. Thank you so much! He opened his ‘pize’ (surprise) and put it around his neck right away; it is so beautiful. He loves his new ‘neckis’ and wants to show Father Nee. Speaking of Father Nee, he got the boys into a Catholic school but we’re not sure we are going to let them go because of sooo much exposure to illness, especially this time of year; it would probably just cause more stress worrying about what they could catch and bring to Jimmy. We are leaning toward not letting them go and continuing what we are doing but they will probably go for a visit anyway. Plus, we have the generous offer of Julie, Doris Bard’s daughter, who is able to spend some time with the boys each week for tutoring, mentoring, whatever they need. That was so gracious of her. She lives and teaches in the Boston area. Her husband, who does research at Dana Farber, will also spend time with the boys; we are so appreciative of their offer. As always, thank you all so much for keeping us in your thoughts and prayers, and offering to help us in any way you can. We are so lucky to have you in our lives and feel completely surrounded by your warmth and love. I am doing better at doing updates, huh? Choppy today but I’ve done it throughout the day as things happen but I may mess up days and dates and stuff… Oh, also, Jimmy now has visits from a physical therapist in attempt to get him to move more. He will do it when he is ready; we all know how he loves his sports and will do it when he feels like he can. He of course wishes he could do all of the things he used to but is very wise to his limitations. Someday...

December 3, 2006

Jimmy had another rocky night last night (Friday night into Saturday morning), mostly tainted by much vomiting that again, had a very disturbing appearance. This time the emesis looked like his stool output. We are told when there is a blockage, what is above the blockage comes up, and what’s below the blockage goes down. The fellow came in and examined Jimmy and nothing alarmed him about his physical exam. When there is a blockage somewhere in the intestine, rather than hearing normal bowel sounds, one would hear ‘pinging’ loud pitched noises. Luckily he did not hear any pinging in Jimmy’s belly. We weighed Jimmy around 2 am and again his weight was up. Around 6 am the stool started to come. Jimmy was very crampy and needed Ativan every 2 hours.

The day was pretty rotten as Jimmy was very crampy and threw up a lot; more than ever. It was bloody and seemed to have pieces of tissue in it. I can also see the little GVH rash on his hands again. It seems to come and go and I seem to be the only one who ever saw it until today. It was there when the weekend attending was in for rounds and he definitely saw what I’ve been telling them about. He said yes, Leslie is right that it would be very, very rare for skin GVH to come back but he agreed that what we saw at the moment was not subtle. I’m not sure where that will go from here. By evening Jimmy’s ‘typical’ stool slowed down and it was bloody again. Jimmy didn’t want to do very much today and he did not say that he was hungry and did not ask for anything to eat; he did not feel well. Although he can barely eat (2-3 grains of rice at a time, mashed potatoes the size of the white of your pinky fingernail) it is nice to have him ask because it means he is feeling okay at the moment. Hopefully tomorrow will be better.

December 2, 2006

Jimmy had a mixed day on Friday. I told them that his midnight