Current Updates

We would like to extend special thanks to Jimmy's oncologists, Dr. Alan Homans and Dr. Louise Sivak. Their personal concern for Jimmy is evident and the professional care they provide him is outstanding. We also wish to express special thanks to Jimmy's nursing team for their loving care and concern. Sincere thanks are also extended to the Child Life staff at the hospital. They provide a variety of helpful services, including taking the hospital photos on this website.

We want to thank the anonymous people who donate the blood and platelets that Jimmy receives. These are truly the gift of life. The gratitude we feel while watching Jimmy receive blood and platelet transfusions is overwhelming. We hope that blood and platelet donors recognize the indescribable power of the gift they give.

September 5, 2006

Tuesday, August 29, was Jimmy’s official day of engraftment!  The stem cells from precious donor #2 are in Jimmy’s marrow and producing beautiful healthy cells.  Last week he clearly had 3 consecutive days of an ANC over 500 and thankfully it continues to be on a steady increase.  His ANC for the past few days is as follows: Tuesday (day of engraftment): 1, 230 - Wednesday: 1,480 - Thursday: 2,890 - Friday: 3,240, Saturday: 3,820, Sunday: 4,320 – Monday: 4,150 – and today (Tuesday): 3,470.  His nagging cough and runny nose also continues.  We all think these are the signs of withdrawal from the morphine as he is being weaned since he has no other signs of anything more serious at this time (no fever, good respiratory rate, good oxygen flow in his blood and clear sounding lungs).  He is also complaining that his stomach hurts, yet another symptom of withdrawal.  That makes us feel very sad; our 3 year old precious boy is addicted to morphine.  It is clearly out of his control and it’s the physiological changes which tell his body he still needs it.  We will go even slower with weaning the morphine at this point, but he is nearly off it.

Who would have never thought the eating and drinking would be so difficult for Jimmy.  His mucositis is still healing but is much better however, he is totally and completely afraid to eat. Apparently his taste buds have changes significantly as well.  He was weaned from 24 hours, to 18 hours, to 12 hours of the artificial nutrition per day in attempt to make him want to eat and feel more hungry since he will need more nutrition than he receives from the TPN and lipids.  So far it has not really worked.  On good days he takes 3 bites of something and eats a few Fritos and he only drinks about 2 ounces of liquids per day but has increased a bit (from when I started writing this last week).  He also has to convert from IV medications to oral medications in preparation for when we are discharged.

Jimmy’s activity and energy level were pretty good on Thursday and Friday, but then we got worried on Saturday when he was very quiet and sleepy, and grumpy while he was awake.  Sunday he seemed more active and took advantage of being ‘unhooked’ for a few hours as he went into the hall for a short time and then played a little baseball with Ricky and Joey in our room.  Ricky and Joey (all kids) are not allowed in the hallways here except for coming and going to the room to visit.  Monday and Tuesday he’s been a bit quiet again.

We just filled out the paperwork needed to ‘identify’ ourselves to precious donor #1.  Now it will be up to him as to whether or not he wishes to release his personally identifiable information to us and whether or not he’d like contact with our family.  Hopefully he will want to, though we so wish we were able to tell him Jimmy was still thriving.  We also found out that we have to wait 2 years to find out information about precious donor #2…another indicator that he is from over seas.  It is sooo amazing to us that Jimmy has had the exact matches they have wanted for each transplant.  First, a perfect match (12/12) and then an 11/12 match with the KIR mismatch; and both coming from over seas; I guess we know where our ancestors are from.  We are so incredibly lucky to have these matches from perfect strangers who are willing to help save the life of someone they don’t even know; we can’t even begin to express our unending and immeasurable thanks to them.  Hopefully some day we can meet them both.

Jimmy loves to hear us read the messages left in his guestbook, so thank you so much for those.  He knows how many people love him and he can tell a story about each of you to let us know that he knows exactly who you are.  Thank you all so much for everything!

August 28, 2006

Better days are finally here for Jimmy, though we have had many, many more HUGE scares over the past few days that we’ll try to describe in a nutshell.  Last Sunday, Monday and Tuesday (20th-22^nd) Jimmy was placed on a close “V.O.D. watch” because of some of the changes that were taking place.  VOD stands for veno-occlusive disease which is a liver disease that can be life threatening.  Jimmy was at higher risk of VOD since this is his second BMT and his liver can only take so much chemo without seeing serious side effects.  Jimmy’s liver function tests were increasing to an even more abnormal level, he had extreme weight gain (2 pounds a day for 2 consecutive days plus more for a total weight gain of 5-6 pounds), and his quickly expanding belly size made it very likely that he was at the early stages of VOD.  He was also beginning to cough and they wondered about fluid in his lungs.  After 3 days of all of the ‘red flags’ he had an ultrasound of his liver (and rest of his abdomen) on Wednesday and thankfully his liver showed normal function and the rest of his organs looked okay.  They also ordered a chest X-ray which revealed that Jimmy had quite a bit of fluid in his lungs.  Hopefully with an increasing white count (indicating that the precious marrow was beginning to produce cells) he’d be able to clear the fluid on his own.  By later Wednesday and into Thursday Jimmy was peeing, peeing, and peeing (ridding his body of all of the extra fluid) and his liver function tests were decreasing (getting better).  This combined with the ultrasound results made the doctors remove Jimmy from the close VOD watch and it was concluded that Jimmy’s fluid retention was due to leaky vessels (mentioned as a possibility in the last update).  For three days he peed a liter a day and his weight and size are now back to normal.

All seemed to be headed in the right direction for a couple of hours, then Jimmy’s cough suddenly increased and a runny nose came along with another fever of just over 102….he may possibly have an infection in his lungs.  More blood was drawn for cultures (4 a.m. Saturday) and yet another huge scare of infection... they added another antibiotic and increased the dose of his antifungal medication.  They also took samples from Jimmy’s nose to test for viruses as well to see if they could determine the source of the fever.  Meanwhile his white blood count was increasing (a good thing) as he was beginning to produce neutrophils (yeah!), but another bump up in his lever function tests (which can be indicative of a viral infection). Oh my God, the stress was unbearable.  One thing after another, one organ after another seemed to be in question.  Luckily, with an increasing ANC Jimmy’s mouth sores began the healing process and he started to speak again (some of his first words included telling Abby ‘Happy Birthday’).  His fever persisted for 2 days but luckily all negative blood samples thus far.  Jimmy’s ANC continued to increase over the weekend, helping his mouth sores, so he began to talk more and is now speaking normally.  His little voice is so beautiful.  He is being weaned from the morphine and is at half the dose he was at his most painful time.  He still is not eating or drinking so remains on the artificial nutrition.  Soooo, Saturday Jimmy had an ANC of 460, Sunday it was 770 and today (Monday) it is 880.  WOW!  One more day of an ANC of over 500 and Jimmy is engrafted!!! Those beautiful stem cells have found their way into Jimmy’s marrow and are producing beautiful neutrophils.  At this point it looks as though the fever may have been to Jimmy’s precious little body working so hard as the marrow was revving up and producing cells.  He had another chest X-ray yesterday and it looked better than the first one in terms of the amount of fluid in his lungs and there was no evidence of an infection in his lungs.  He still has a cough a stuffy nose today so we’ll see what comes next.  His blood pressure is still EXTREMELY high and out of control.  He is on 3 different blood pressure medications at the moment.  As I re-read what I have written it sounds so confusing and unorganized, but that is how it has been….absolutely crazy and overwhelming and one serious issue after another; I just can’t describe it.  I can also not describe the amount of medication that Jimmy receives through his lines.  It is just non-stop around the clock with 4-5 medications/morphine/nutrition, etc. being infused simultaneously.

Today, Jimmy is acting more like himself though he is not eating or drinking, but that will come as his mouth continues to heal.  We can breathe at this moment, but like we said things change by the hour and you truly never know what will come next.  Jimmy has several oral meds that he is still unable to take at this time, but 2 of his blood pressure medications are oral and he has no choice.  We often push ‘the button’ to give him an extra dose of morphine before he has to swallow the medication because there are still a significant amount of sores in his mouth.  I can’t even imagine what it must have looked like in his mouth when he wasn’t talking or smiling…just too much.