Heaven help her and me. I need to learn some patience anyway. ( And I am so bummed because I really wanted Jesse to get to have time with Mrs Trish and Mrs Jeannie)

When we were in clinic yesterday, the nurse mentioned that her immunizations where no longer up to date because she had a stem cell transplant. I wasn’t thinking clearly at the time, but when I told Mike his first question was will she have to be inoculated for everything again. So I called the clinic to find out.

Yes she will have to be inoculated for everything again next April. Why a year? Too soon will cause her to become sick from the immunizations. If we gave her the MMR shot too soon after the 100 days, then she will probably get measles, mumps, or rubella.

When I asked her nurse about going to preschool since I had signed her up, she told me she would check with the doctor. She did say she didn’t think it would be possible just for safety sake. Plus her immunizations won’t be up-to-date… so I can’t see sending her anyway. The risk is just too great, but her doctor might have a different opinion.

I don’t want Jesse to fall behind in knowing her numbers, colors, letters, and how to write her name… plus the socialization of being with the other kids. Luckily she has her big sister, and other kids we are friends with.

But then it also raises the question… when her 100 days ends… does it really? I don’t feel comfortable taking her to large public places without having immunizations to protect her. Also it’s a little aggravating because all those months of breastfeeding to build up her immune system… gone.

And I am being selfish because I was really looking forward to having at least 3 mornings a week to myself to get work done… maybe even workout. It’s not easy for me to ask someone to watch the girls if I am going to have fun.  Being selfish is just one of those feelings I will have to overcome… and we will settle into our own routine.  Sometimes my head wants to explode with thinking about how much Jesse and Christine have had to endure at a young age. And sometimes I get so frustrated with them over arguing for no reason… but they are kids and that is what they do.

Update: Jesse’s nurse called this afternoon.  Her doctor is ok with her going to school, but because the last phase of her treatment will last through December she won’t really be at school.  Then when she can go in January, she won’t have any inoculations as protection against the flu.  I am thinking at this point in time I would rather keep her home until she can have her shots. But as with everything cancer… all is subject to change… and there is no real ability to plan ahead.

This morning Jesse and I made our usually trip to CHKD for Jesse to have her counts checked. For more than half the ride she rode with her head down. Only when I reassured her that we were coming home did she perk up. I really hope she forgets this last visit before we begin the antibody rounds. ( Although I am sure that will be traumatic since we will begin in the PICU…. I really hope that I am wrong.)

Our appointment was for 8am. Of course, I was in the parking deck at 7:12am. I sooo have time issues.

We checked in at the front desk, then went to the backdoor of the clinic and into isolation room 1.

While we waited for Jesse’s counts to come back, Jesse watched a movie and snacked on graham crackers all the while talking about what she wanted for dinner.

Jesse’s doctor has placed her on a medicine to increase her appetite. This should be interesting. He wants her to gain weight in getting ready for radiation.

As for her counts:

ANC: 968 ( this is lower than normal range, but par for the course after a stem cell transplant and stopping the neupogen.)

Red Blood: 8.6 (enough to not have a transfusion)

Platelets: 66 (This is great because they are coming up on their own signalling that her red and white blood cells should start increasing on their own)

They also counted another number. This was to see if she needed the hour and half infusion of a immune booster drug. Hers was above 500, so she didn’t need the infusion.

She has also been removed from the portable IV, giving her a little more freedom.

Trying to explain Jesse’s 100 days of contact precaution… has been a little difficult for me. I am hoping that by writing it out here, it will help me to explain it clearer. ( I have left some very confused people in my wake 🙁  )

Until July 14th, Jesse has to follow very special precautions because she is at high risk for infection due to the stem cell transplant. I have learned from several nurses who used to be involved with bone marrow transplants at other hospitals, we are very lucky. People who have bone marrow transplants have to follow even stricter requirements for their safety.

• Hand hygiene is crucial!!! Hands are great tools, but they are also great ways to spread germs.
• Jesse shouldn’t go to public stores or places (she can go, but they have told me to go at times that aren’t busy).  The reason being is we don’t know who is there with what.
• No eating in restaurants or getting fast food because we don’t know how long that food has been sitting out in the open.
• No public ice machines due to bacteria and germs. ( I wouldn’t even let her have the ice from the machine on the floor because I saw people come from other areas of the hospital with their personal cups…)
• Leftover food older than 24 hours is not to be eaten by Jesse.
• Once Jesse’s food or drink is prepared she has 90 minutes to eat or drink it. Once the time is reached, the food and drink must be tossed.
• At clinic, she has to be in an isolated room for her safety. Not that they don’t clean that clinic very well and the toys too, but I think that the staff doesn’t want anyone to feel guilty if Jesse gets sick.
• To get to clinic, she has to wear a mask. Granted we’re in the hospital… and unfortunately that is where the greatest population of sick people are.
• We can’t walk through clinic to get to the room. We have enter the clinic through the back door.
• No new plants or animals. We were told this from the beginning. And in fact they would not allow her to have flowers in her room because of the bacteria.
• I can let Christine go to school. I debated about that for awhile. But our doctor told me it would be fine. And her teachers at Walnut Hills are the best. This entire time they have bent over backwards to clean the room and everyone’s hands. I greatly appreciate that.
• If I open a container of apple juice for Jesse, I can’t give her anymore juice from that container after 24 hours.
• She is not able to have angel food cake ( we are all a little baffled on that one).
• No fresh fruits or veggies.
• No cereal or other food containing dried fruits.
• No juice that hasn’t been pasteurized.
• No soft serve ice cream, cheese made with mold, or yogurt or sherbert from bulk machines.
• No fresh deli meat.
• No well water.
• No fruits or veggies with blemishes.
• Friends can visit Jesse as long as they have been well for 48 hours and not around anyone else who has been sick for 48 hours.
• Jesse can’t be in the sun between 10am and 2pm because of sensitivity.
• No bug spray, but she can use sunscreen.
• No new mulch in the yard (good thing we never got around to that this year)
• If Mike or I are around any chemicals, we can’t handle Jesse until we have showered.
• If we cut the grass, we have to shower before we can be around her.

After day 28 (currently we are on day 15) Jesse will begin radiation. I had thought about staying in Norfolk since the price of gas is increasing. But after her getting depressed during our last hospital stay, and fear of not knowing how the place was cleaned and who had been there before, I have decided to just make the trip back and forth.

I’m a little behind…. Being home with Jesse on an IV bag and other unexpected bodily functions is exhausting.

On Saturday, April 16, 2011, Jesse was released from CHKD. I was so thankful we were going  home on Day 10 from her stem cell transplant versus having to remain inpatient for more time. By the time we left, Jesse was having bouts of depression from being in the hospital. Our doctor allowed her to leave because her ANC was above 2000 and had been for 3 days. One hour before we checked out, Jesse asked for a graham cracker. This was the first thing she had eaten in 4 days.

Sunday: Jesse still isn’t very interested in food or drink. She does eat a slice of processed turkey meat.

Monday: Jesse actually asks to eat a cereal bar while we are at clinic. I figured that she would need platelets and red blood transfused, but her counts are enough to not have the transfusions. Mike and I asked that she remain on the IV fluids until we returned to clinic on Thursday. Our concern was that she would get dehydrated… and then she would be back inpatient because of it.

Tuesday: I let her have Scooby Snacks (dog biscuit shaped graham crackers… yeah I know I’m setting her up to accidentally eat one of the dog biscuits… but hey she’s eaten dog food before) for breakfast.

Wednesday: Same breakfast, but so far today she has drunk far more than the other days… and ate 4 mini corn dogs and finished her corn. Hopefully tomorrow we can retire portable Fred (the IV bag). When she is on that she refuses to walk or even drag him behind her. She is still weak, but getting stronger every day.

Now we are in the 100 days of not being in public and people looking at me funny when I try to explain…

Jesse’s ANC is 1600!!!!

Her platelets are a little low, and she will receive a transfusion. Her red blood cells are maintaining, which surprises me. I really figured that she’d need red blood. And she might before we are able to go home.

My goal today is to see if I can get her to eat solid food so she can get off the TPN and lipids. She isn’t drooling nearly as badly, so I am hoping this is a good sign.

Jesse also has not had any morphine since 3pm yesterday. Her pulse has been great and she has not complained of pain. I see no reason to continue her on getting it and having her attitude in the toilet.

Her nurses and I have also made the decision to take her off of constant benedryl and ativan to see how nauseous she really is. And they might be taking her off of the 4 antibiotics she is currently receiving because of running the fever.

Right now she is sleeping… although there were periods in the night where I would wake up and she’d be grinning at me… I am not really sure if I should be concerned…

And it’s time to hopefully get off the morphine because whew what an attitude!

On Sunday, my favorite IV lady returned to TPA Jesse’s red line because there was a clot in the line preventing fluid from traveling through. Luckily that went very smoothly, and the line was available for use within an hour and a half.  Jesse was still feeling pretty punk. During the day she did not have a fever, but by the evening she ran one, and then again at 4am on Monday morning.

On Monday, Jesse received IVGA. This is a drug to help boost her immune system and give her some added protection. She slept most of the day with no fever, until around 6:30pm.  This time it was 38.9 Celsius (around 102 Fahrenheit).  At 4am Tuesday morning, her fever spiked again.

Tuesday, Jesse received platelets since her count was 10 and she had blood mixed with the drool from her mouth. She was a little more grumpy on Tuesday, but once again slept a good deal. That night her temperature reached 38.3 Celsius. A hospital considered fever is 38.5 Celsius (a little over 101 Fahrenheit). Our nurse returned an hour later to take Jesse’s temperature and it was 37.8 Celsius. The temperature came down on it’s own!!! Yeah!!!

No fever early Wednesday morning.. and no fever yet. I am praying that she is through the period of fever.

At 7am this morning, I was able to get her count information:

Hemoglobin : 8.9, was 8.8 yesterday

Platelets: 34, was 10 yesterday

ANC: 680, was 0 yesterday (Normal range is 1500 – 8000)

Neutraphil Cells Counted: 100,  only 15 counted yesterday. The lab likes to be able to count 100 cells 🙂

I asked her doctor if this was going to dip, and his response was no. She is on the upswing!

Later in the morning, Jesse was sitting up by herself.  She didn’t fight me to clean the blood off her lips when she learned that she could have chap stick. Our resident came in to visit at about the same time. She left laughing because Jesse was fighting the chap stick wrapper and refusing my offers to help her.

By this afternoon, she was out of bed playing with fingernail polish and playdough (not together… oh what a mess that would have been!)

She asked to eat a muffin, and painfully ate about an eighth. Her mouth is still sore, but hopefully by tomorrow that will be healed.

I requested that we take her off of the continuous morphine… her mood swings were getting crazy! One minute laughing, the next pretending she had a gun and pointing it at me. When I told her that was rude and we do not point guns at people, hysterical tears in the floor because she thought I was mad at her. This kid had better never do drugs… she’ll get caught in a heartbeat!

Right now her pulse is great. I don’t know how long it takes for the morphine to get out of the system, but I am praying that tomorrow I have a happier child. Thank you everyone for your prayers! They have meant so much. And Thank You God for answering them. 🙂

The past few days have been very difficult to watch. It’s hard not to want to snatch her up and start running, but I know that I can’t really out run what is going on. All we can do now is make her as comfortable as possible.

On Wednesday, the doctors and nurses suggested that a morphine pump be set up in case she needed it. As hard as it is to think about your child being on morphine because they are in that much pain, I am okay with her having it. Anything to keep her comfortable as we can.

By Wednesday afternoon, a fever had begun. This is par for the course with the chemo that she received. Her interest in food began to diminish too. Now I think that was in part to the sores beginning in her mouth and along her GI Tract.

On Thursday, Mike came so that I could go home for our St Baldrick’s event in Williamsburg. While I was gone, Jesse’s fever reached 105 degrees Farenheit. The doctors also made the decision to put her on continuous morphine and 3 antibiotics. We were able to skype her into the event so that she and Mike could see a little of what was happening. Even though she felt bad, Jesse waved and tried to look cheerful. She didn’t stay awake for everything, but I was happy that she got to see a little bit. 🙂

I returned to the hospital on Friday afternoon. Mike and I both stayed with her that night, but he was exhausted from the night before and was out before too long. I stayed up with Jesse giving her Tylenol when she needed it and holding her bucket when she needed to throw up. Her heart beats per minute reached 206 at one time. Normally her heart beats per minute are around 128.

Saturday morning began with a fever around 103.8. Jesse stayed awake for most of the day. In the afternoon, 2 nurses came in and began looking very closely at Jesse Central Line (also called a CVL). They told me they could feel a small air leak in the line, and they had called the IV Therapy person on duty for the weekend.

I began looking at Jesse’s line when the nurses left. I found where the small pin hole was… down at the very end of her red line…. And it had to be repaired… and repairing it meant that her CVL couldn’t be used for at least 4 hours.

The IV Therapy lady arrived. We didn’t hit it off very well. And that’s probably putting it nicely. Mainly because I got the feeling that since she does IV therapy for a living she knows best… and she just doesn’t really listen (I found out later it’s very common for the nurses to have to get a little forceful with her to get her to listen… and she did do a good job in the end… and I let her know she had made me angry.)

Note: I didn’t want anyone to get confused about other nurses in the hospital. All the nurses that are the ones in charge of Jesse’s care are some of the best people I have ever met. They have loved her as their own child, and I see them love other children as their own too. The IV lady works on all floors of the hospital, and I am sure that all have their own procedures.  I don’t want to see this lady get in trouble; that isn’t the purpose of my post. The purpose is only to tell what happened and that I stood up for Jesse’s safety. And you should always question things if you are not sure of what is happening.

Due to her CVL being unusable for 4 to 6 hours, they needed a pic line in her arm. First the IV lady tried Jesse’s hand. Blew that vein. I have made the decision that I don’t think I will allow her hand to be poked anymore. The vein is too small… it always blows and subjects her to a second poking… Plus on top of this the IV lady was giving her lanicane to numb her hand.. and that didn’t work because Jesse was screaming bloody murder with every prick.

When the hand blew, the IV lady headed for her right hand. I redirected her to Jesse’s elbow. Most mothers don’t want it the IVs in their elbows was her reply. I do because she has the pulse ox monitor on that hand anyway… and when that is on her finger she refuses to use that hand! I should have asked her if she knew my kid?

As the IV lady is pricking Jesse she is carrying on about how she has to hold still and really must be asleep for her to be able to do the CVL repair. She’s 2 and you’re poking her! What do expect her to be a statue? The kid is doing great with you pricking her and having 3 people holding her in order for it to happen!

Once the line is in the IV lady goes to prep the repair kit and supplies. Jesse is exhausted and falls asleep (very convenient because that lady would have pushed for some knock out drug I’m sure).

She wanted to relocate Jesse from her pressurized room with the double doors to the treatment room (where other kids have been that might be carrying a cold or other bacteria… not that kids can help it… we just have to be really careful about that). The nurse tried to explain to the IV lady that Jesse is so neutraphenic now and for the next 100 days that she can’t even have an apple. I don’t think the IV lady listened to her because the nurse came in the room and told me the IV lady wanted Jesse move to the treatment room.

Bless the hearts of all the nurses up here on 8B… I am sure they get caught in the middle of so many many things! I looked at the nurse and told her “I’m very sorry to use this word, but you can tell the IV Lady to ‘F’ off. We’re not leaving this room.”

While the IV lady was prepping her repair kit, I asked the nurses if we could change Jesse’s tape. It was due the next day anyway, and I could see this lady ripping the tape off of her. Something I didn’t want to subject Jesse too. Tape changes using detach all are torturous enough for her.

The CVL repair happened right here in the room. When the IV lady came in she said something that I don’t remember now, but I remember replying to her in a way that quickly changed her tone. I think that it had to do with her tape change. I do remember saying to her in a hateful tone ( I know horrid of me and I am not really proud) something along the lines of I didn’t want you ripping it off of her.

Then I climbed right in Jesse’s bed, held the old CVL for the IV lady and the nurse since the IV lady had on sterile gloves and Jesse was grasping the nurse’s hand in her sleep. At one point, the IV lady had me put on sterile gloves to help hold the repair spot together so she could super glue it.

By the end of the repair the white line was working, but the red line was not and at this point still isn’t. The IV lady is supposed to come back today to put TPA in the line to open it up. They think that a clot occurred higher in the line before they could heprin it. The TPA will take an hour to work, and hopefully the red line will reopen. It’s now noon… and I haven’t seen hide nor hair of her… she probably forgot.

At 10:45pm last night, the nurse started using the white line of her CVL. So far so good 🙂 I will be watching to make sure that everyone flushing her line from now on use the push pause method. I really don’t want her to have a surgery to replace it. The doctor on the floor told me that if they had to right now, they would have one in her neck for temporary until the new one was ready to use.

This morning Jesse is sleeping. She was awake most of last night. As for her fever, it did reach 104. I noticed taking Tylenol was extremely painful this morning. And when she threw some of it up, she also threw up some tissue. This is because of the mucositis and the lining of her esophagus sloughing off. In fact our night nurse said it was the worse case she had seen. Bummer 🙁 But hopefully this is rock bottom. Thank you everyone for the prayers.

Jesse and I have reached the point where thankful for me there are no knives or pointy objects in the room ( cause she might use them on me) I threatened to go home a couple of times today, which I shouldn’t be doing because that messes with her sense of security.

The day began with a flurry of activity in the ante room to her room as the nurses completed paperwork, received the stem cells (which came in a bag the size of buy in line bag of M&Ms in a box of dry ice that could hold at least 1000 bags), and the water bath to warm the cells.

At 10am, the nurse began administering the steroid, benedryl, and tylenol that Jesse would need for the transplant. At 10:30am, four nurses entered the room. One hung a bag of saline to drip by gravity. Then on the same line via a splitter, they hung the stem cells. Within 15 minutes, the stem cells had infused. As the cells entered, I noticed a new smell from Jesse. I had been warned that she might smell like garlic or creamed corn. To me, she smells like tomato soup.

Once the infusion was complete, she had to keep the pulse ox and heart monitor for 2 hours. Let the power struggle begin. First she wanted the pulse ox monitor on her finger… then her toe… then her other toe… then her finger. When I wouldn’t allow her to move it from her toe to toe, the grouch came out. At one point in the day I threatened to get her a metal trash can, elephant, farm, worm, and to paint her green.

She was able to eat lunch, which surprised me. I thought that the smell she had acquired would affect her ability to eat. By 5pm, she was done.

Then at 8pm she was wide awake. Jesse ate a banana and turkey. In order for her to be able to eat a banana, I have to wash the peel… wash my hands… peel the banana… dump on a plate without touching it…. wash my hands again… deliver her the banana. I’m not complaining about it by any means, just trying to explain how vital cleanliness with Jesse is now.

She was a grouch when she awoke and even after eating. She refused to talk to her dad, refused to talk to the nurse, refused to talk to a friend that called. Then at 10:30pm she told me her but hurt. I figured it was part of her drama from the day. I changed her diaper, but still she was screaming about her but. I looked at it, but there are no sores on the outside.

We had been warned that Jesse could get mucositis, which are sores somewhere along the GI tract from being neutraphenic. For a half hour she would clench her but and scream. This occurred the last time she was neutraphenic and had to poop. The nurse and I made the decision to give her morphine. By the time the morphine arrived Jesse had calmed down.

I don’t know how long she lay awake because I fell asleep. I think she felt so bad that it felt better to have me to hang onto.

This morning Jesse is laying in my lap. She has not asked to eat, and doesn’t act like she feels good at all.

At this moment we are 13 and 1/2 hours (possibly could be longer or shorter) to stem cell transplant.

In about an hour, our nurse will hang a special IV bag with electrolytes to help her get ready for the transplant. From what I have been told the transplant itself can take from 5-15 minutes. The prep and paperwork take an hour and 1/2. Ah red tape 😉

Jesse has been throwing up from 1-3 times a day, but she has handled everything really well. It floors me that we have almost finished the chemo round of her treatment.

Right now at this moment, she is sleeping. I pray that her transplant goes smoothly. And in her hard headed little way, she never realizes she had chemo or a stem cell transplant.

And the number 1 ( We did A and 0 yesterday)

Yesterday, Monday, Jesse was admitted to hydrate over night in preparation for chemo today. We were in our room by 3pm. I wouldn’t let Jesse go to the playroom because I feel this is setting a dangerous precedent for later in the stay when she absolutely cannot go because of germ concern. Luckily we are in a room with double doors so I can blame it on being in a really special room.

At 5:30, we had dinner. Jesse unfortunately got sick. I am not sure if she ate too fast or if her stomach hurt. In clinic right before they hooked her up to Fred she complained about her stomach. But once we got upstairs, until she threw up, she seemed fine.

The only thing they had in her medicine draw was phengren. On getting that she was out like a light until 7:30am.

This morning she ate 3 bowls of cereal and 1 waffle. The child life experts came by bringing her a cardboard playhouse and a toy kitchen. The house we can take home, but the kitchen needs to stay for the other kids (fine with me because we have one at home 🙂 )

As I was setting up the kitchen and house, chemo began. First was the melphan for 20 minutes. Somewhere in this, Jesse threw up. Then she felt better.

Once the melphan finished, the carbplaten and etoposide began it’s 96 hour run. They are both going in her little body on the same CVL line. For the first hour they checked her blood pressure every 15 minutes. Jesse was miserable because she had to stay on the bed, and couldn’t help me put together the play kitchen.

The cardboard house Jesse can color and decorate. I placed the kitchen in the house. She spent the afternoon happily playing with it. In fact she never even noticed the TV was on.

Child Life from the clinic brought her playdough with several molds. We played with that for an hour. Around 5:30pm, Jesse started getting funny looks on her face. I grabbed the bucket to have with us. She mentioned being hungry, but I had a feeling that wasn’t really the case. I let her have gummies. She ate 2, and was done.

At 6pm, she was due to get zofran. But 10 minutes prior, her stomach decided that it needed relief. She didn’t throw up everything. The nurse gave her zofran and benedryl to help her feel better. By 6:30pm, Jesse was asleep.

She almost woke up to talk with Mike, Chris, and Mom via skype… but she was too exhausted.

It was great to talk with them via skype. Chris actually had a conversation with me! Usually she doesn’t. I think that it’s easier for her to talk to me when she can see me. I also gave her a tour of Jesse’s room. For her, the biggest thing is being included. I am sure at points she doesn’t feel that way.

She has been asking me if she can shave her head for weeks now. When I told Mike tonight that I talked with Child Life about it, she asked if she could shave her head right then. They feel that it is a great chance to learn a life lesson and feel included in what is going on. I am for it if it will help her to feel included. I just hope that she doesn’t equate Jesse’s hair being gone with special treatment. This might be a very important life lesson.