Monday, August 1, 2016
Day 7; Positive Image
Today was the day Abigail went to a place called Positive Image. It is a salon at the hospital where kids can get a new haircut, shave their head, get fun hats and scarves, or even come up with a wig they would like. Abigail and I looked yesterday at new hairstyles and she chose a new, shorter style. I heard the specialist give her tips on how to deal more easily with the hair loss. It was a pretty emotional morning; but I was able to hold my shit together.
This experience was further complicated by a migraine headache (her not me!). I think it is complication of polypharmacy. We are weaning off the morphine and using more Tylenol and PRN pain medications. By the time she was finished with the cut she could not tolerate a style or to look at any hats or scarves.
I will wait for Abigail to feel like showing off her new hair before I post any pictures. I'll describe it as: at the shoulder and very fresh looking. I hope when she wakes up and has a chance to really style it, she will feel good about this. But still, it's shitty. It's hard. There is nothing that will make this part easy for her. And having your mom sob while your hair is being cut off certainly does not make it any easier or less shitty. So I held it together, and later tonight in the shower I'll have my usual cry.
She had her chemo (VCR and DAUN) and now she is just resting until she goes down for sedation and the LP. She will get her IT chemo this afternoon as well. Something about knowing chemo is going into my child's cerebrospinal fluid makes me feel good. It's so strange to me... I feel GOOD there are chemicals being put in my kid's body. But - yeah - let's give everything we can to fight this.
The other thing I don't feel comfortable with is the Lupron injection today. It's basically inducing menopause with a chemical. I'm worried about this a lot and I cannot rationalize why. I am worried about her future fertility, and that's all I am willing to say right now. If I write about it, it makes it more real, and I'm not ready for that to be a reality yet. I know the Lupron is meant to help preserve her ovarian function, and I know that she needs this, but I still feel so sad about it.
She is still sleeping. It's been about 90 minutes now and I'm so grateful she can sleep off the migraine.
Our nurse practitioner is coming by very soon to do some more teaching for discharge. I have a lot of questions that I have been waiting to ask her. I love that this hospital incorporates NPs in the medical team. The hematologists and oncologists are extremely important, but the support and education we get from the NP is invaluable.
I have nothing but good things to say about UW Children's Hospital. They've really figured this shit out. It feels like a true partnership.
To her aunt, cousins, and friends who have visited: she told me yesterday that your visits really raised her spirit yesterday. Thank you so much. It wore her out, but I'm telling you, I could see her heart swell. You made a difference.
Sunday, July 31, 2016
Day 6; Because I Like Checklists And Spreadsheets
Not much to update because today is Sunday and the unit is very quiet. The attending doctor came by and I let Abigail have a private discussion with her. Whenever a medical provider asks her if she has any questions she looks at me and says, "Do I?" So I said to her today that they want to know if SHE has any questions and that I would give her privacy to talk to her doctor alone.
Day -1: Intrathecal Cytarabine (IT ARAC). She got this Monday at the time of her first lumbar puncture (LP). It is chemo they put in her spinal fluid. That is was intrathecal means.
Day 1: Vincristine (VCR), Daunorubicin (DAUN), Prednisone (start of a 28 day course, oral)
Day 4: Pegaspargase (PEG-ASP)
I also "encouraged" (read: made) her take a shower unassisted last night, undress and redress herself, brush her teeth, and now that she is off IV fluids, she is taking herself to the bathroom. This all seems like pretty reasonable stuff, right, but she was so weak from almost a full week of essentially being bed-bound, that yesterday, even a walk down to the cafeteria, was so taxing we had to take a wheelchair back to the unit. Today we put a special mask on her, and we walked outside even. I am proud of her. Her nurse is being very pushy (as she should be) about her getting out of bed, walking, and drinking enough liquids. If she does not drink 2.5 L today she might have to go home on fluids. I cannot tell you now much I do NOT want this for her. So I made a chart - LOL - some of my friends understand my obsession with spreadsheets and charts - for her to see her fluid progress. Some people overeat or drink too much when they are stressed out, but I make spreadsheets.
Here is the schedule for induction (the first phase) and the names of the drugs she is to receive.
Oh and the study is AALL1131.
Day 8: IT Methotrexate, VCR, DAUN (she will have this tomorrow, on day 7, to facilitate easier discharge)
Day 15: VCR, DAUN
Day 22: VCR, DAUN
Day 29: IT Methotrexate; also bone marrow studies. Risk stratification and treatment randomization occur here as well.
On Day 36 when her blood count parameters are met, and after treatment randomization is complete (if we chose to stay "on study") she will being the next course of treatment called Consolidation.
Common Side Effects:
Vincristine has side effects of: constipation, hair loss, jaw pain, and weakness.
Daunorubicin has side effects of hair loss, vomiting, and pink or red colored urine, tears, sweat.
Prednisone has major side effects of mood swings, acne, increased appetite, weight gain, stomach pain, and loss of bone density.
Pegasparagase has a side effect of allergic reaction
Methotrexate IT has side effects of GI upset, vomiting, nausea, headache.
And enough of that medical jargon....
Here are some pics of this lovely establishment I now feel like is my second home. Yes, already.
Saturday, July 30, 2016
Day 5; I'm Glad To Be Here
It's day 5 because it's the 5th day of induction (the first round of treatment chemo). However it has actually been 6 days since we heard the words, "Your daughter has leukemia."
When I actually heard her doctor say those words I literally could not hear anything else. I heard "Your daughter has leukemia, we know this for a fact, we do not know what kind, but there are very effective treatments for this." Then that's it.
I heard Chris choking on a sob.
I saw Susie's face get red.
I felt my eyes sting.
But I did not really hear anything else. I don't even know if I asked any questions (like I usually do).
The other thing I remember is this medical student yawning. I wanted to stand up, slap them in the face, and leave.
I refrained. But I made a mental note to NEVER be so inconsiderate.
I noticed the lack of eye contact from the medical students. I felt sorry for them.
Anyway that was Day -1. I am glad we never ever have to go back to that day. I am grateful we are on Day 5. I am glad to be here.
I feel that is worth repeating.
I am glad to be here.
I am glad to be surrounded by such brilliant physicians who have such a talent for blending the science and art of medicine. I am glad to be here with nurses who are not only compassionate and caring, but also competent. I am glad that my daughter was diagnosed and started on treatment in less than 24 hours. I am grateful I work with some amazing women and men; and that I am able to be here with my daughter - and I know my own patients are well cared for.
So since today is Saturday the unit is quiet and there is not much to update on.
Some changes to her plan:
1. On Monday, Day 7, she will get her Day 8 chemo and LP. A day early so that we may get to go home on Tuesday earlier. However the rest of the treatments for the month will remain on Tuesdays.
2. Her leg, hip, back, thoracic pain is all gone. This is reassuring that the chemo is working and her leukemic cells are reducing!
3. Her jaw and mouth are hurting. This is a known side effect of one of her chemo drugs. It's pretty severe. She is using her pain pills (scheduled and PRN), ice packs, and magic mouthwash to help.
4. Her IV fluids were stopped but she was supposed to drink 2.5 L of fluid today, and because her mouth hurts, I fear she has not and will not get to goal. I hate that she is hooked up to an IV, and I want her to start to feel more "normal" again. But without the fluids, I also worry about her kidneys. It's the mom vs. nurse battle, always.
5. She hates taking pills. HATES it. She will need daily prednisone (helps the chemo work), ranitidine (protects her stomach from the prednisone), senekot (one of her chemo meds causes constipation). On weekends we will add antibiotics to prevent lung infections. If anyone has suggestions, or things I can say to her to help her take her pills, I am all ears. Please offer advice.
6. Her doctor came over with more consents to sign for the clinical study. She told me that the cytogenics are back and while she could not remember the specific translocation of her B-Cell ALL, she did know that is was nothing that would change her treatment plan. Nothing "bad"... but isn't that fucked up? Isn't it already bad?
7. Her labs for anyone who cares:
WBC 0.6
Hgb 12.7 (YAY!!!)
Hct 36
Platelet 11 (she will soon get another transfusion, the cut off is 10)
ANC - this is not on the lab report they gave me, but she is still neutropenic. She will be considered neutropenic until her ANC comes up to 500. She is in the low 100s.
Her electrolytes and kidney function are all good, her uric acid remains low. Everything looks very good.
Today was another Pet Pal day and she went to see the dogs. She only lasted about 5 mins before she asked me to go back to her room due to lightheadedness. Our goal was 4 short walks in the hall. We have only done 2. She sat up in the chair for a couple hours though. I ordered her a pizza from Domino's and she was in HEAVEN, rolling her eyes back in her head with enjoyment of "outside world food." We discussed what she wants me to cook when we get home. She had a friend visit and that was helpful for her spirits. I had a friend visit and that was helpful for my spirits. (I also got a much needed toe nail polish.)
A close friend recently told me to try to think about how this is an opportunity to make lifetime memories with my kids. I am grateful for that. I am glad to be here; glad that my kids and I can experience this. I know we will look back and see this was another drop of glue holding us together.
When I actually heard her doctor say those words I literally could not hear anything else. I heard "Your daughter has leukemia, we know this for a fact, we do not know what kind, but there are very effective treatments for this." Then that's it.
I heard Chris choking on a sob.
I saw Susie's face get red.
I felt my eyes sting.
But I did not really hear anything else. I don't even know if I asked any questions (like I usually do).
The other thing I remember is this medical student yawning. I wanted to stand up, slap them in the face, and leave.
I refrained. But I made a mental note to NEVER be so inconsiderate.
I noticed the lack of eye contact from the medical students. I felt sorry for them.
Anyway that was Day -1. I am glad we never ever have to go back to that day. I am grateful we are on Day 5. I am glad to be here.
I feel that is worth repeating.
I am glad to be here.
I am glad to be surrounded by such brilliant physicians who have such a talent for blending the science and art of medicine. I am glad to be here with nurses who are not only compassionate and caring, but also competent. I am glad that my daughter was diagnosed and started on treatment in less than 24 hours. I am grateful I work with some amazing women and men; and that I am able to be here with my daughter - and I know my own patients are well cared for.
So since today is Saturday the unit is quiet and there is not much to update on.
Some changes to her plan:
1. On Monday, Day 7, she will get her Day 8 chemo and LP. A day early so that we may get to go home on Tuesday earlier. However the rest of the treatments for the month will remain on Tuesdays.
2. Her leg, hip, back, thoracic pain is all gone. This is reassuring that the chemo is working and her leukemic cells are reducing!
3. Her jaw and mouth are hurting. This is a known side effect of one of her chemo drugs. It's pretty severe. She is using her pain pills (scheduled and PRN), ice packs, and magic mouthwash to help.
4. Her IV fluids were stopped but she was supposed to drink 2.5 L of fluid today, and because her mouth hurts, I fear she has not and will not get to goal. I hate that she is hooked up to an IV, and I want her to start to feel more "normal" again. But without the fluids, I also worry about her kidneys. It's the mom vs. nurse battle, always.
5. She hates taking pills. HATES it. She will need daily prednisone (helps the chemo work), ranitidine (protects her stomach from the prednisone), senekot (one of her chemo meds causes constipation). On weekends we will add antibiotics to prevent lung infections. If anyone has suggestions, or things I can say to her to help her take her pills, I am all ears. Please offer advice.
6. Her doctor came over with more consents to sign for the clinical study. She told me that the cytogenics are back and while she could not remember the specific translocation of her B-Cell ALL, she did know that is was nothing that would change her treatment plan. Nothing "bad"... but isn't that fucked up? Isn't it already bad?
7. Her labs for anyone who cares:
WBC 0.6
Hgb 12.7 (YAY!!!)
Hct 36
Platelet 11 (she will soon get another transfusion, the cut off is 10)
ANC - this is not on the lab report they gave me, but she is still neutropenic. She will be considered neutropenic until her ANC comes up to 500. She is in the low 100s.
Her electrolytes and kidney function are all good, her uric acid remains low. Everything looks very good.
Today was another Pet Pal day and she went to see the dogs. She only lasted about 5 mins before she asked me to go back to her room due to lightheadedness. Our goal was 4 short walks in the hall. We have only done 2. She sat up in the chair for a couple hours though. I ordered her a pizza from Domino's and she was in HEAVEN, rolling her eyes back in her head with enjoyment of "outside world food." We discussed what she wants me to cook when we get home. She had a friend visit and that was helpful for her spirits. I had a friend visit and that was helpful for my spirits. (I also got a much needed toe nail polish.)
A close friend recently told me to try to think about how this is an opportunity to make lifetime memories with my kids. I am grateful for that. I am glad to be here; glad that my kids and I can experience this. I know we will look back and see this was another drop of glue holding us together.
Family Game Night
While Chris got some needed alone time with her, I played Life with them. It was fun, and a little taste of our normal life. We play games, cards, etc. often. I think it was a nice way to show her younger siblings that some things are the same while other things are different.
A more medical based update will follow later today.
My heart feels softer today and yet also stronger.
XO
Friday, July 29, 2016
Worst Sleepover Ever
Here is a picture of Abigail before our big night last night. Big night of watching the DNC with her mom in the family room at Children's Hospital in Madison. Totally appropriate. Just like her Netflix and Chill shirt, and those cosmic leggings with cat and dog heads. You can't tell, but behind that mask she is smiling and we did in fact have a lot of giggles. #DemsInPhilly
Day 4
We know it is B-Cell ALL but we do not know the sub type and will not know until the cytogenic testing is back in a few weeks. However, because of Abigail's age she is already considered 'very high risk' and is already receiving the most aggressive treatment plan. Once she finishes the induction period (in about 4 weeks) and has another bone marrow test we will know what her MRD (minimal residual disease) is and what her responder status is. Until then, all we can go by is her daily lab work, which at this points, according to her doctors looks promising.
WBC 0.9
Hgb 9.6
Hct 27
Platelet 13
ANC 140
Her electrolytes are normal and her kidney function is great still, and her uric acid level is very low, so now she can stop the allopurinol (a drug used to protect against tumor lysis syndrome).
She is off all IV medications and is taking everything by mouth. Her pelvis and leg pain are better (resolved even), her thoracic pain is better, and the headache is gone (so far). She has some jaw pain which we are not sure if it is due to her wisdom teeth coming in, which we just found out about a week prior to her diagnosis (great timing), or if it is already a side effect of the chemo. Ice packs have helped. She has an increased appetite and has been taking in enough to drink. So she may even get to have her IV fluids discontinued soon. She is now able to leave the unit and go for walks even outside as long as she wears the right protective mask.
Right now, as I type, I'm sitting next to her while she gets her first dose of Pegaspargase (Peg we call it). It has a high rate of anaphylactic reactions, so her nurse is actually sitting at bedside quite literally monitoring her. I have to say that the nurses on staff at this hospital, in this unit, are some of the most dedicated, caring, loving, smartest nurses I have ever encountered. I have an incredible new respect for this extraordinary profession I am so proud to say that I am a part of.
Abigail got up and walked to the family room and watched the historic acceptance speech by Hillary last night. We all sat up with blankets and pillows, and watched the DNC. It is now confirmed, this is the worst sleepover ever (for a 15 year old).
How Abigail is doing:
Someday soon, I hope she will write on this blog and tell you herself. Until then I am respectfully trying to articulate how I think she is feeling. She is anxious and her PRN lorazepam is working well. She is sad. She is frustrated that she gets tired so easy and says things to me like "I am trying so hard." She would benefit from some praise and encouragement. If you wonder what you can say to her, tell her how strong she is and how proud you are of her. Because she is strong, and we are very proud of her.
How is Mom/Dad doing:
I am less tired and less scared. Chris is DYING to get back up here. I've given him the important task of getting cup of noodle and a bottle of hot sauce. Our girl has some strange and random tastes. He will come this afternoon or evening and bring the Littles up here. I am gong to play board games and card games with them when they arrive.
Later today I will post some pictures for those of you who are not on Instagram.
Subscribe to:
Posts (Atom)