My mom mentioned today that the next two to three weeks are the peak season for the flu. If this is the case this year, Jesse’s primary oncologist is home sick with it. I hope he feels better soon.

Since he was out sick, we will return next Wednesday to meet with him about the future plans. I am very comfortable with Wednesday because by then he will be over the flu. Sorry Doc. We love and think you’re great, but I can wait until after the flu has passed to see you 🙂 As I am sure he’d feel the same way if one of us had the flu.

Plus this gives us an extra week to think of anything we want to ask about Jesse’s neuroblastoma and what we can do to help her.

Mike and I did make the trip with Jesse down to CHKD before we found out, but that was ok. Jesse has a rash every where they used the orange cleaning solution in the or. I know it has a name, but the name has escaped me. Luckily one of the other doctors was able to take a look at Jesse. He feels that this is a contact dermatitis starting from an allergy maybe to the tape we have been using for over a year. Then the orange stuff (I will think of the right name around 3 am 🙂 ) exasperated the situation.

In other exciting news: Jesse gets to take a full out bath tonight!! What she hasn’t had a bath? No she hasn’t. The CVL could not get wet because she could end up with an infection. Yes they have an aqua patch, but it was so large on Jesse that it would end up under an arm pit. Very uncomfortable to pull off. So we’d gotten to where we’d wipe her down.

When we told her she could have a bath, Jesse has been really excited. She can’t wait to be like her big sister. She even asked if she could take a shower. That one will have to wait until the stitches from her CVL removal have healed.

It is amazing to me how I thought Jesse was used to that CVL, when really she wasn’t. Since that line has been out, she has run everywhere. The limp Mike and I were worried about is gone. She is back to being the kid I knew in July of 2010. I pray she always feels as good as she seems to feel today.

Ah CVL I thought you’d be coming out the normal way. We’d come in to Day Surgery and have it removed. But Jesse had other ideas, I guess her skin decided that was the boring way. I’d have taken it.

Friday began as any normal Friday. Ferfer came in the evening and helped me change Jesse’s tape. When I finished the change I noticed Jesse scratched a couple of times, but I thought she was adjusting to the new tape.

Last Friday she spilled water on herself within 1 hour of tape change, and we had to change her tape again. Jess learned a valuable lesson that night, “get my line wet, and I have to go through tape change again.”

Saturday started normally too. I went ice skating for a bit while the girls helped Mike hanging a ceiling fan for our neighbor. That evening I flushed and heprenized Jesse’s line per our usually daily routine.

After I finished she went to the table to eat dinner. Halfway through she suddenly exclaimed, “Mommy, I spilled watermelon on my tape.”

I checked her tape, it looked dry. But then I noticed it was red under the tape. Immediate red flag. Her skin has never been red under there the day after tape change. Then I noticed the foam bio patch over the entry spot was soaked. Big red flag. My immediate thought was crap the CVL has a pinhole again!

I carried her to her bed room, grabbed my tape change bags ( I have everything divided into daily line care and tape change items), and began using detach all to remove the tape.

As I got the first layer of tape off, I noticed the dressing was wet underneath. Not the pinkish wet caused by the detach all, but a clear wet.

We called the oncology emergency line. The funny thing was her doctor was the one on call. He suggested changing the dressing, watching it for 2 hours, and if bio patch became wet again to call him.

I had cleaned her area with cloroprep right before he called, and noticed that right at her CVL entry site it wasn’t drying. I have to admit at that moment I was thinking a bad word.

We covered her site, and on doctor’s orders brought her to the CHKD emergency room. Mike stayed with Christine because she began to cry when I was changing Jesse’s tape. Ferfer was kind enough to ride down with me to CHKD at 7:30pm.

We arrived at the emergency department around 8:30pm. They placed Jesse in the quiet room to protect her since we have no immunizations. Then we were taken to the casting room to meet with the doctors.

When I explained what happened to our nurse and the resident, they had a look of “oh crap what do we do?” at first they talked about sending us home, then thankfully the VAT team person came.

While she was gathering supplies, Jesse was laughing and playing with Ferfer. Ferfer asked her where the little girl who was asleep when we arrived went. Jesse replied, “I’ll go look for her!”

We removed Jesse’s tape for the third time that night. She flushed the line, and saw no hole. But then we noticed her skin where the tape had been was weeping.

The VAT team nurse immediately said we need to get that line out because her skin is over the tape. She spoke with the head doctor, who had talked to our doctor, and they called the OR to see if she could be scheduled to remove the CVL on Sunday.

The resident surgeon  came to see us. He told us that they had an out of state case coming in tomorrow, but they would fit her in. I am fine with that because this is a special case, and I am thankful to get that line out.

Around 11pm, we were moved upstairs to 8b. Jesse was really excited to see her friends. She sang a song, ate some Cheerios, and colored.

At 12am, she had to stop eating to prepare for whenever they can take her to the OR.

The nurses also tried to place a line in her hand so they we could have fluids going to maybe take an edge off the hunger. But Jesse’s body wouldn’t cooperate with the needle insertion. After three tries, we decided that we’d let them place the IV in the OR.

Jesse fell asleep about 1am. I layer awake for awhile. It’s hard to sleep after you’ve gotten a rush of adrenaline.

Around 7:30am, the surgeon came to see us. She mentioned that they didn’t know when Jesse would have the CVL removed, but it would happen today.

At 8:30am, our primary oncologist stopped by. We talked about her having the CVL removed, and that he still wanted to see her Tuesday to go over her scans. He did tell me that her left kidney is still swollen. And they plan to keep a very close eye on that kidney. I really hope in time that kidney will fully recover.

I talked with Mike around 9 telling him that I didn’t think her surgery would be until 2 or 4 pm. Jesse awoke around 10am asking for food, but quietly accepted she couldn’t have any until after the CVL was removed.

At 11:30am our nurse asked if she was ready to go for her surgery. I was shocked. Mike hadn’t reached the hospital yet, so I called to let him know.

They took us down to the Pre-Op waiting area to get her paper work in order and meet the anesthesiologist, who was one we actually had not met. Around 12:30pm, they took Jesse back. By 1:15pm, the surgeon was in the waiting room telling us that everything went really well. She also told us that we were going back up to 8B.

A few minutes later the PACU nurse called us back to see her. Jesse was screaming with her eyes closed and thrashing around the bed. I thought she was in pain, but the nurse said she woke up from the anesthesia too soon. We gave her some morphine, and she went back to sleep. At 2:30pm, they took us back up to 807. Jesse slept until 3:30pm.

Our nurse called the resident to see what they wanted to do about discharge. I am over residents. I know they need to learn, but half of them come look that the papers, then leave.  She didn’t come look at Jesse at all. Only when we started pushing about when can we go home, did the resident come see her. And the nurse had to page her to get her to come back. I just wish they would use some common sense.

At 5pm, they brought Jesse dinner. She was so hungry she even ate their rubbery corn. Finally at 6pm we headed home.

Jesse fell asleep on the trip home and slept all night. I slept with her because I was concerned that the rash on her chest looks like it spread to her neck. And this morning we are seeing it on her arm. It looks like poison ivy, but I can’t think of anywhere she go into poison ivy. We have called her nurse to see if they want to she her today or wait until tomorrow.

 

Mike and Jesse in 807. Jesse had just asked Mike is she still has cancer.

Ah sedation… either we are up all night or out an hour to half hour before bed time.

Bed time here is 8pm. We read stories, brush teeth, and call it a day. Since I don’t have the girls take a nap during the day, this comes very easily. I found out early on that when Jesse naps, Jesse stays up.

Mike and I had settled down to watch Big Bang Theory, when Jesse joined us at 8:30pm. She played in our tv/ playroom until 9:30pm when she appeared to be winding down. I put back to bed at 10pm, to which she asked if she could play in her bed. I have no problem with this because usually she will stay there and fall asleep. At 10:30pm, she was in our room.

She wiggled and flopped around like a fish out of water for an hour.  Then I noticed she was sliding off the bed. She would pause halfway and look to see if I was still awake. When she felt I was asleep, she went to the door, paused to see if I would catch her, then trotted off to the playroom.

I caught her playing by the light of the moon. She calmly went back to her bed, asked if she could play in her bed, and I went back to my bed.

At 1:21am, Jesse crawled in our bed and finally passed out.

Jesse and I headed off to radiology this morning for the last test: bone scan.

We arrived at CHKD at 7 am (I was concerned that my afraid of the tunnel buddy was back at work, I was right).  Jesse took one last swig of her tea. She couldn’t have any clear liquids after 7:30am.

At 8am, nuke med was ready to give Jesse the contrast to seep into her bones. This medicine takes 3 hours to get into her bones. While Jesse waited she made a face, and got to hang it next to the face made by a friend from clinic. Her friend’s face was an awesome picture of a little girl with no hair.

The sedation unit weighed Jesse (12.2kg), and we went to the Ultrasound waiting room to wait for 10am.

At 10am we returned to sedation. They completed their paper work. Jesse saw the sedation/ emergency room doctor. We were really lucky today and got my favorite sedation/ emergency room doctor. She remembers Jesse every time, gets straight to the point, and is so much fun! I like the other sedation/ emergency room doctors, but I connect with her better plus she called the oncology doctors one time and asked them to do a bone marrow ahead of schedule since Jesse was already sedated.

Jesse kept telling the nurse that she was ready, and we took her into the nuke med imagining room before she was asleep. I laid her on the special bed for the imaging machine, and left her to be photographed from head to toe. This was at 11am

The nurse mentioned it would take about 45 minutes to 1 hour. At 12:45pm, I do admit I was getting a little nervous.

At 1:15pm, the nurse found me in the MRI waiting room, and I went to see the still sleeping Jesse.

The nurse told me they did have to catheter her, and we have one episode of bad pee. But it doesn’t seem to be as painful as last time. They also told me that Jesse kept wiggling her toes, so they would have to up her precedex and take the picture again.

By 1:45pm, Jesse was awake enough for us to head out. She slept the entire ride home.

Tonight we received good news that her bone scan results were good. We are really excited with those results. 🙂

On Jan 17, we meet with her doctor to talk about where we go from here.

Today was a whirlwind tour of CHKD’s radiology department. Jesse was scheduled for an MIBG test (neuroblastoma puts off a special hormone which when mixed with a nuclear isotope lights up when a special camera is used), CT Scan of her chest and abdomen ( I really hope this means we can stop taking Voriconizole… before our new insurance, it was a tad expensive. Not as bad as it could be though.), ECHO/ EKG (Etopiside and Doxarubin chemotherapy can cause heart damage.), and Audiogram (Cisplatin chemotherapy can cause hearing damage.).

Our check in time was 6:30am, meaning we needed to leave here by 5:15am, 5:30am at the absolute latest. Jesse woke up briefly to get dressed and then was back out. Mike ran to 7-11 to grab me a Vanilla Cappuccino for the drive.

We arrived with 10 minutes to spare, and began the check in process for radiology. This involves signing in, then waiting for your name to be called, filling out forms on what drugs Jesse is taking, and then waiting for them to take back to the sedation unit.

At the sedation unit, they weigh her (12.4kg!!! but she did have her boots on…) and take her vitals. They have paperwork to fill out, so Jesse and I played for about 45 minutes. At 7:45am, her nurse came in with Bob (the pulse ox) and Fred the IV Pole.  They have a new Bob that is about the screen size of a Kindle Fire. We joked that at least Bob can stick to his New Year Resolution. Jesse even told them hello.

The nurse hooked Jesse up to Fred and began running the Precedex. Jesse never screamed or was upset about any of it, and within 5 minutes she laid down. I texted Mike and FerFer that she was a pro by default for falling asleep so calmly.

They handed me a blue pager and wheeled her off for the hour long MIBG test.

At 10am, the pager buzzed letting me know she was in the sedation unit where I could go see her. The first thing the nurse told me was that they had to catheter her because when they began the MIBG test her bladder was full, blocking their view of the tumor. In her sleep, she fought them. They upped her dose of precedex, and she still fought them. The nurse told me she was really worried there might be hand prints on Jesse because she had to hold her so hard. Luckily there are no hand prints.

I am not angry about the nurse having to hold Jesse. This had to be done to see the tumor. I do wish Jesse had not fought quite so hard because every time she has peed today, she is screaming bloody murder. And tonight at bedtime, we had a 15 min discussion about who took her “good pee” and was the “bad pee” ever going away.

On the other hand I am really impressed she fought them in her sleep. Tough little kid 🙂

Around 11am, she was awake enough for me to take her upstairs to audiology. When we entered the office, there were 3 pictures of cats with telephone headsets looking beyond freaked out. And above it said, “This is your front desk staff. Be nice.”  But the ladies behind the counter where nice to me so not sure what happened to the in the past to leave a distinctively foul taste in their mouths.

The audiologist was awesome, as she always has been. 🙂 Our appointment was for 1pm, but they allowed us to come when we finished with sedation.

Jesse slept through all of it. They blew air into her ears to check on her tubes she had placed at 11 months. One has fallen out, and the other is going. The slits from her ear tube surgery have closed.

Then they tested a certain frequency by bouncing a noise or air (I am not really sure?) off the ear drum and measuring it with a computer. The audiologist was very pleased, and because of this, she didn’t try to wake Jesse up. We will have to make an appointment to return when she is awake for the rest of the hearing test at a future date.

We left the room, which looked like a 1950s nuclear fallout shelter, and were out of the parking garage by 11:39am.

Jesse slept the entire way home. We made it back in time to get her sister off the bus, of course she was far from pleased to see us. She had a wonderful afternoon with our neighbor planned in her mind… and well I ruined that.

The girls spent the rest of the afternoon playing with their doll house. And around 6pm, Ferfer came to change tape. About the time we started Mike called to see what we’d like for dinner.

While we were on the phone with him, our oncology nurse called.

The tumor is still there, but it is stable and no new signs of it elsewhere, not even in her bone marrow. I had expected this, but was hoping for a miracle that maybe it shrunk another 50%. Mike was a little devastated by the news. I think he had it in his heart, and had been praying really hard, for the tumor to be completely gone. Please don’t misunderstand, he is happy that the tumor is stable. But I can understand the level of fear knowing it is still there brings. All we can do know is be proactive through what she eats and pray.

It’s a hard place to be. Waiting, watching, praying something doesn’t go haywire again. Wondering what went wrong the first time. Praying that we get her CVL out to stay out (Don’t know when that will be yet). I know a lot of people use the term cancer-free. For Jesse, this is not the reality, and I have a hard time with that term anyway. How can you be sure that you are cancer-free? All it takes is 1 free radical hitting a part of your DNA, and that DNA not reconstructing itself correctly… bam.

After dinner, Jesse decided that she would get water from the fridge herself. She accidentally dumped some on herself, getting it on her tape. So Ferfer and I had to take off that tape and place new tape. I didn’t want to leave wet tape on her for fear of allowing bacteria or other nastiness to grow.

On January 10, Jesse will have a bone scan.  The radiology department will put contrast through her CVL, then we wait for her bones to absorb it, sedation, and pictures taken.  All of this sounds like it will take between 5 and 6 hours. I could be wrong, but from the time schedule they called with, it sounds like a long test.

January 17, we meet with her doctor to discuss the scans and what we do from here.

Yesterday we began the after treatment scans. These scans will let us know if all the treatment have stopped her tumor from growing and contained it to the area right below her kidneys.

The first one on the list was the bone marrow biopsy. Jesse and I arrived at clinic at 7:35am. I wanted to get there early to get Jesse on the list for the anesthesiologists.  The way it works is bone marrow biopsies are fitted into the schedule of the anesthesiologists, who’s schedule is made months in advance.  This means if they have a crazy schedule, Jesse won’t have the procedure done until 2 or 3pm. This also means she can’t eat until after she wakes up.

I am very proud of how patient she was. She only asked once if she could eat, but when I explained we couldn’t till after they took her bone marrow, she never asked again.

At first when I mentioned the anesthesiologist, she asked if she was getting her picture taken (this is what we called radiation). I explained that no, this would be different.

At 10:30am, our nurse asked Jesse to come with her to the procedure room. I tagged along. I planned to stay until she fell asleep, but when our doctor didn’t seem to mind I was there, I just stayed.  This might sound horrible, but I have been curious as to how bone marrow biopsy is done.

In the room was a lab technician with 10 lab trays set out. One set for the left hip, one set for the right hip. Since Jesse is on a study, they take two samples.

Then our nurse attached Jesse to Fred the IV Pole. We talked about Fred taking sleepy medicine, and would she help Fred take a nap.  The anesthesiologist gave her ketamine. He gave her a small dose at first with the intention to finish the rest after a few minutes. We had to stop Jesse because she figured she help by pushing in the rest.

When he pushed in the rest, she was out.  While she was going to sleep, our doctor was getting sterile. He asked her if the blue sterile gown met her approval. This is a throw back to Jesse telling him he had on the wrong color one day.

When she was asleep, they rolled her on her side. First they swabbed the area with sterile scrubs (I can’t remember what it’s called), then he stuck a needle of lanicane on each side. Even in her sleep Jesse did jerk a little. In fact our nurse was positioned to hold her in anticipation of this. After doing tape changes, I totally understand the need to hold her down. And I would rather they hold her down than have her jerk causing more painful damage.

The doctor noticed I was watching intensely. He was surprised when I said this was the first one I had seen. When I explained that the other doctor wasn’t comfortable with me being in the room, he understood. And they talked about a poor lab technician who fainted when he saw his first bone marrow biopsy. Unfortunately the lab technician hit the bed when he passed out breaking his jaw.

After the injections, he took out a needle with a blue cap from a sterile kit. This was shoved into her hip, the blue end opened, and a syringe used to draw out blood from that area to test. The technician then put drops on each slide and used another slide to flatten out the sample.

The doctor replaced the blue cap and removed the needle.

Then he retrieved a larger needle from the sterile kit.  Here is a picture:

This picture is from kendallhq.com

This needle was shoved into her hip. This didn’t look easy, and as the doctor explained, you don’t always get bone marrow. And even though Jesse was asleep, she would still try to arch her body away. When she did this the anesthesiologist would give her more ketamine. She ended up getting 50mls of ketamine through her CVL.

Getting bone marrow is like augerring a tree for a sample. We were lucky and got a sample on the first try.

Pulling this needle out was not easy. In fact Jesse’s skin would rise with the needle as it came out. The doctor would push it down to prevent a tear from happening.

When this hip was completed, a new needle was used on the other hip. The sample was taken in the same way, and the technician carefully labeled everything for the lab.

Jesse was wheeled to another room to recover, which didn’t take her long. She began fighting the ketamine within a half hour. By 12:45pm, we were out the door and on our way back to Williamsburg.

By that afternoon, Jesse was running around playing. She did act a little stiff, but it didn’t really seem to slow her down. She was by herself most of the afternoon because her sister went hunting with her dad for the first time. I am really surprised that Chris was quiet and seemed to really enjoy the experience.

This morning, Jesse has had several grumpy episodes. I am sure she is sore, but when I ask her if anything hurts she says no. She did tell her dad last night that the doctor took her “bone mares and I have band-aids on my butt!” She is very proud of her band-aids, as she should be 🙂

Jesse and I headed out to clinic this morning around 6:15. Highlight: made her great uncle jog some while trying to talk to me.  He has started a new exercise plan. If he sticks with me I’ll have him jogging in no time. (Couch to 5k!!!).

Traffic was great. We arrived at clinic at 7:15.

Due to Christine being diagnosed with bronchitis yesterday, Jesse was placed in a room. She wasn’t happy about this, but I told her sorry we aren’t taking the chance of infecting other people. She settled down and played with her ipad. This was a huge treat because the girls have lost the privilege to watch TV since they want to talk to me when I am on the phone, can’t get along, and won’t listen to me. We’ve been without TV for two weeks. Their dad told me the other night Jesse sat in his lap and asked to watch football. I have also had Christine tell me whatever I wanted to watch on TV was okay with her.

I talked with her doctor about her skin. We had to conduct an emergency tape change Sunday because she spilled grape juice on her chest. When I cleaned her skin with the cloroprep it bubbled up like a chemical burn. The doctor felt this was and the redness of her hands are due to the Accutane. We also talked about the redness of her hands. The doctor explained her circulation was great and showed me the ways to test.

Jesse’s counts are great, save for the IVIG. The infusion began at 10:15 lasting two hours and 15 minutes. While we waited, Jesse ate some of the food I had packed. Our nurses stopped by to talk, and the nutritionist came to check on her. The nutritionist came because Jesse weighs 11.7kg. Last week she weighed 12.1kg.

I get very frustrated with the nutritionist. In fact today I told her today I was not starving my child. If this woman would read the protocol of drugs Jesse takes and the side effects, she would learn that Accutane affects appetite. I think this is the second time I have told her this. The other times I have seen her have been during antibody when Jesse is not interested in eating either. And these are times when my frustration level is already high because I have been trying to get her anything she will eat to only have her reject it when I get it to her.

Her suggestion is always pediasure or ensure. It’s a nice thought but I can’t afford to waste $7 for 4 bottles of Ensure or Pediasure that Jesse will only drink a sip of. It amazes me… We complain about our society being overweight, but when the child doesn’t meet the predefined weight qualifications it becomes a huge issue.  I do understand in some cases this is a sign of abuse, but in our case to have to deal with some carrying on about Jesse’s weight when she is running, playing, does eat, and acts normal (save for the moments of Accutane rage) is a slap in the face.  Not to mention one of my brothers was a small child, plus her maternal great-grandfather was only 4ft 11inches and skinny his entire life.

My other rant on this is I am not a buffet. I will not have a brat who thinks I should cater to whatever she wants to eat. She needs to learn to eat what is served to her and be happy she was fed. She also needs to learn to try new foods, broaden her food horizons. My mother never made a “special” meal for us. If we didn’t like what was for dinner, breakfast was served in the morning.

Ok I’m done 🙂

Child life came around bringing Jesse a Minnie Mouse coloring set. It is a really awesome little set. I have left her in the kitchen with the markers supposedly coloring on paper. This might not have been a wise move on my part…

Now that we have completed the Accutane, Jesse will be entering into the scans phase. Next week we will have a bone marrow biopsy because that has to occur within a certain number of days from stopping the Accutane. We had hoped to incorporate that with one of her scans, thus cutting down on the number of times she will have to be put to sleep. Plus we wouldn’t have had to wait on a time the anesthesiologist had. Now we will arrive at clinic at 8:15am, and don’t know when she’ll be put to sleep because it will depend on when the anesthesiologist has time. Their schedules are planned out months in advance, and the cancer kids get squeezed in here and there.

In January, Jesse will have CT Scan, MIBG (Scan with nuclear medicine that highlights the hormones put off by neuroblastoma), and bone scans. They will be over a two week period. We are praying that there is no change, or miraculously the tumor has shrunk more.

Wishing everyone a Happy and Peaceful Holidays.

We are counting down to the end of Accutane. Last Friday of Accutane!!! Poor Jesse is red and peeling, and screaming anytime I approach her with Aquaphor or lotion.

We went to clinic on Tuesday. It was a quick visit, but next clinic won’t be because Jesse needs IVIG, which is about a six hour infusion. IVIG is a protein found in the blood. She is just barely below the normal level.

The Accutane is getting to her. She had a fight with herself over wearing a band-aid yesterday. And one minute she is manically laughing, then crying, and back. I pray that drug is doing what is should, because it has severely messed with mind when she has been on it.

Today we received several cards. Thank you so very much.For everyone that has sent cards through out this year thank you! They have meant a great deal. Jesse loves carrying them around the house. (I try to scan the card into my computer first before it disappears so I have record. )

We received one card from Singapore that is absolutely gorgeous. I am not one to tear up, we often joke that I am the husband, and Mike is the wife (even the girls call me Dad and him Mom all the time), but this card is amazing.

I have included pictures below.

 

 

 

 

 

 

 

 

 

 

Yesterday Jesse and I made the trip to CHKD for blood work, urine analysis, and exam in preparation for starting the last round of Accutane. After this round, we have just scans….

Traffic scared me. Where in the world was everyone? I actually drove through the HRBT at 55mph… that is far from normal for 7 in the morning on a Monday. And I only saw 1 bus… usually have to deal with several. My biggest guess is that the guy or gal who is petrified of the tunnel went on vacation this week.

Prior to this we had 2 weeks off. Two very quiet weeks thankfully 🙂 I went to the Bizarre Bazaar. Didn’t buy anything, but got some awesome ideas for projects I’d like to tackle to help raise money for cancer research or RocSolid, which is a local organization helping families of childhood cancer patients. They built Jesse a playground last March.

We hung out with friends, worked, and just enjoyed being home. It is very nice to not have any inpatient stays. I really hope we don’t have to do that again.

Jesse had her normal Accutane rage, which has now started to combine with the Terrible Threes. My mom witnessed it yesterday over not getting candy when she went on the toilet.  She screamed at me for about 15 – 30 minutes. I never give her candy for going. I tell her that expect her to use the toilet.I wonder if she was thinking, “If I scream enough, Grandma will go behind Mom’s back.” Luckily Mom is awesome and doesn’t do that to me 🙂

It was nice that she used the toilet at clinic yesterday. We have had to pad her diaper in the past, and wait 6 hours or more to get enough urine for the analysis. Even had to involve Fred the IV pole on a few occasions.

Her counts were great, except for her CO2. That was low, but the doctor felt that might have occurred from how they drew the blood. I asked him about her freckles that magically have been appearing on her face in the last week. I saw a faint one on her lip Wednesday, and by Friday it was dark. The doctor wasn’t concerned about them. At this stage of the game, they make me nervous because they are new. It’s hard to articulate what I mean right now because I lost my thought process having to stop to tell the girls not to lay in the toy box.

We left clinic by 10:30am, and headed back to Williamsburg. I had one stop to make on the way in to pick up a present I’d order online.

This week starting Wednesday, 94.9 The Point, will be holding a radiothon for CHKD to help raise funding for the hospital. It will be on till Saturday.

Mike and I laughed so hard tonight at Jesse’s fortune cookie:

“Today you should be a passenger. Stay close to a driver for a day.”

As I type this, Jesse is doing just that.  There are days that I feel like she has a little internal homing beacon set to “Locate Mom.”

This morning, Jesse and I headed for clinic. Traffic was pretty impressive, and added an hour to our trip.

Mike stayed here to get Chris on the bus for her first day riding the bus. Chris’ fortune cookie tonight said, “Courage conquers all things ; it even gives strength to the body.” Very appropriate for her first day at Norge. Mike called me at clinic to report Chris had bounded happily onto the bus and wasn’t upset to leave him. Mike on the other hand was glad he had his sunglasses.

At clinic, Jesse played with a friend who is the same age. The girls set next to each other laughing for a little bit, and then they were off.

Jesse also showed off her new skirt her dad bought her. When we have inpatient stays, he can’t stand being at home without me. So he goes out for some retail therapy. I am so glad we are done with inpatient stays. Please Lord let it stay that way! I don’t know how much retail therapy I could stand. Luckily he only buys 1 new article of clothing for each of them.

I had expected Jesse to need blood because when she was discharged on Friday her level was 7.9. But she had increased to 8.9 by today. Yeah! Guess packing lunch and expecting to have a transfusion paid off in not having one 🙂

After her other labs came back, they cleared her to begin her Accutane. So by next week we should have the Accutane rage replacing the coming off of antibody rage.

This weekend and today, I have had several episodes where I have had to put her in her room and walk away. I know the antibody causes a recipient to have flu like feelings, and we have had those. Strangely they have only really manifested when I ask her to clean up the playroom or take her medicine.

We left clinic by 11am. And I was able to get back to the house to meet Chris when she got off the bus. I asked her what they did at school today. She tells me the play stuff and her dad the educational stuff.  She has always been closer with Mike. He tells me all the time this will change as she gets older, but I don’t know. She needs a lot of patience… and mine is pretty tapped lately.

I would say that I am going to go to bed, but I have two people in this house who would never leave me alone until after 9pm (their bed time is 8:30pm). And even then… I get the Mom! yells. Oh I can’t wait for them to be teenagers… Yes I will be the mom vacuuming at 7:30am.