The Transplant

This page provides email updates sent out to family and friends related to Isabelle's Bone Marrow Transplant (BMT). She re-entered the hospital with Kelsey to begin preparation for the transplant on Tuesday, September 26, 2006, and received the stem cell infusion on Thursday, October 5, 2006. The new stem cells began engrafting on Day +11, Monday, October 16, 2006. Isabelle came home on Monday, November 6, 2006.

Kelsey sent out the following update on Sunday, November 5, 2006:

Isabelle Update Days +30 and +31

Hi--

Isabelle had a mixed weekend. It started out kind of rough after her procedures on Friday. She woke up Friday night screaming in what we assumed to be pain. After a few doses of pain meds, she fell asleep again and slept until morning. When she woke up (at about 1 a.m.), Anna climbed into the bed/crib with us to try and settle Isabelle. We all ended up sleeping in there and it was quite crowded (understatement).

Isabelle woke up Saturday morning in an awful mood and it didn't improved until after she ate a homemade lunch from my mother (rice and black beans of all things). She started smiling and laughing after that and her good humor continued through this evening. Her numbers still look good and the only thing keeping us here is the CMV virus. According to the doctors, the infectious diseases group will make a decision about switching Isabelle to an oral version of the anti-CMV medicine. Since Isabelle has become quite skilled at spitting out her meds, this is not a simple decision. She currently gets 2 infusions a day via her central line. Also, given that her "copy rate" of the virus is not reducing on the current medicine, infectious diseases will weigh-in on whether to give her the second (more negative side-effects) drug, which would likely extend her hospital stay.

Additionally, Isabelle continues to eat well but is not drinking anything. I mean, nothing. I've tried pretty much all the liquids the hospital menu has to offer and she's not interested in more than a sip of anything. Dr. Milner said that if need be, I could administer some IV fluids at home. She doesn't want to force/worry too much about getting Isabelle to drink because it shouldn't become a negative exercise in her eyes (as every parent knows, you must pick your battles). So, this hurdle is doable. I started packing up around the room and I'll continue tomorrow. Dr. Milner would like to see us home tomorrow, but there are many pieces to Isabelle's discharge that need to be put together before we walk out the doors.

Grandpa Tom and Peg both headed out on Saturday. Craig picked up his Mom (Bebe) on Sunday, meeting his brother Dell in northern PA for the exchange (they drove up from Harrisburg). Craig and Bebe came into the hospital for lunch and visited while a rejuvenated Isabelle was holding court.

Keep your fingers crossed and please say some prayers that we can get out of here!

Kelsey and Isabelle

Kelsey sent out the following update on Friday, November 3, 2006:

Isabelle Update Days +28 and +29

Hi--

Well, after nearly 40 days and nights in the hospital, I finally realized it was time to build and ark and get out of there. Isabelle had a monumentally fussy day on Thursday. She woke up at 4 a.m. and cried literally all day. It reminded us of when she was on steriods. She was a monster. Craig offered to stay the night and I eagerly accepted. Once he was settled in, I drove home and surprised Anna and my father, Tom, and his wife, Peg. It felt great to be home. I got Anna ready for bed and climbed in with her to tell her some stories about Isabelle's day. We both lasted about 10 seconds. The next thing I knew it was 1 a.m. and I decided that sleeping in my clothes was just fine. What a restful night.

Meanwhile, back at the hospital, Craig and Isabelle were doing just fine (see pics). She fussed for a while after I left but then fell pretty soundly off to sleep for most of the night, waking for a couple of stretches to have a bottle and get her vitals taken, and generally catching up on the sleep she had missed the night before. The nurses always seem to be on a higher lever of vigilence when a dad is on baby duty, but Craig had a very easy and trouble-free night of caring for "Bubby". Despite his shortened night of sleep, he was able to make it into work on Friday morning.

Isabelle has pretty much stopped smiling again, especially since she came off her regular doses of morphine earlier in the week. The CMV virus levels are still pretty high, and that could also be contributing. But her color is better and she looks healthier overall. A lot of her general puffiness has abated in recent days, partly because they took her off her IV nutrition. Now they are a bit concerned with her level of hydration because she is not taking in as much liquid orally as she should be.

Today, Isabelle had a bone marrow aspiration and a spinal tap. The procedures went well (I stayed right in the treatment room with her) and we were back up in her room in record time. Isabelle's doctor, Dr. Milner, stopped by later today and said that she had looked at the marrow and that it looked good. She seemed encouraged. The spinal fluid was also in good shape--no CMV lurking in either place. If Isabelle behaves herself, we might get out of here next week.

After more than a month of staying with us, Tom and Peg are going to be breaking camp and resuming their lives. We really appreciate all that they have done to care for Anna, keep our household going, and visit us at the hospital. I don't know what we would have done without them. It meant that Anna had a regular schedule and that Craig could visit me each evening. Both of these were crucial to our lives and well being. Craig's mother, Betty (a.k.a. Bebe) is arriving on Sunday to begin helping with Anna. Also, my mother's tenure as a fulltime school aid is finished today, so she'll be around to help, too. This is all good news.

Have a great weekend!

Kelsey

Kelsey sent out the following update on Wednesday, November 1, 2006:

Isabelle Update Days +26 and +27

Hi--

Sorry for missing yesterday; Isabelle had a couple of fussy nights and I couldn't quite leave her side without her screaming. This would be fine at home, where I could shut her door and go downstairs, however, here she is only 2 feet from me and I can't adequately concentrate with her screaming. I think she was coming down from the last of her morphine. The little junkie had the shakes, listlessness followed by extreme anger, and irritability. Finally, around 5 p.m. tonight, while she was eating some Ghirardelli chocolate, she looked up and smiled at me. Chocolate must be really good for us. The chocolate was a Halloween treat for me from Mary Campbell, regional coordinator for Families with Children from China (FCC). Isabelle and I are both enjoying this. . .

Isabelle continues to make slow but steady progress with her transplant. At this point, she looks great in terms of her numbers and we see no signs of the dreaded graft-versus-host disease. This can, unfortunately, rear it's ugly head at any point during the next 6 months, so we are nowhere near out of the woods yet.

We are actually still here in the hospital because of the CMV virus, not the transplant. The virus is still in Isabelle's blood stream and it continues to make copies of itself. The doctors want to see if the virus has made its way into other parts of Isabelle's body. Today, they checked her eyes by dilating her pupils and looking inside. This was accomplished by prying her eyes open with a tiny metal speculum. Ouch. She was not too pleased. They did not find any evidence that the virus has infiltrated her eyes which is good news. On Friday, they are going to do a bone marrow aspiration and a spinal tap to determine if the virus has wormed its way into either her marrow or spinal fluid. If either of these areas have been infected then Isabelle needs to go on an additional medicine to fight the CMV. This medication comes in IV form only so we'd need to remain in the hospital for the course of the med. This medication also comes with health risks, so they really don't want to put her on it if they don't have to. Please pray that the current medicine will stop the CMV from replicating.

Isabelle, my father and I watched a Halloween parade on the pediatric floor here in the hospital. Staff were lining the halls with candy and other treats and the kids walked from one end to the other. We didn't march in the parade because Isabelle wouldn't keep a mask on (also, who needs all that candy?) so we hung out by some vending machines and watched the action. Isabelle was very interested in all the goings-on. The kids seemed to really enjoy themselves. There were a number of kids dressed up like hospital patients (but exaggerated) and the IV poles really added to the look. There was something so sweet about the staff trying to make this day normal/fun for the kids; but there was also something so sad about the kids needing to be there on this day. I will admit to indulging in a small pity party thinking about Anna at home preparing to go out without me. My friend Lynne called to say that she had seen Anna, prowling the neighborhood as a black cat, when she came by Lynne's house and she gave me an update on the festivities in the neighborhood. Lynne continues to come to the hospital every day to see her mom and support her where she can. Please continue to pray for this family.

Craig came by the hospital on Tuesday night after trick-or-treating with Anna and spent the night here with me and Isabelle, which was nice.

Well, I'm short on sleep and long on words, so good night.

Kelsey and a wonderfully sleeping Isabelle